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Clements, Z. A., Rostosky, S. S., McCurry, S., & Riggle, E. D. B. (2021). Piloting a brief intervention to increase positive identity and well-being in transgender and nonbinary individuals. Professional Psychology: Research and Practice, 52(4), 328–332. https://doi.org/10.1037/pro0000390

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Ghanouni, P., & Quirke, S. (2023). Resilience and Coping Strategies in Adults with Autism Spectrum Disorder. Journal of autism and developmental disorders, 53(1), 456–467. https://doi.org/10.1007/s10803-022-05436-y

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by Lisa Macafee

Disproportionate Mental Health Impacts of Being Transgender And Autistic
LGBTQ+ autistic people experience disproportionate impacts of being double marginalized.  Many adults are getting autism diagnosis later in life due to increasing awareness of different types of autism presentation and changes in the DSM-V that allow for a broader understanding and diagnosis of autism (Stagg & Belcher, 2019).  Autistic adults compared to neurotypical adults have higher rates of substance abuse disorder, diagnosis of depression, ADHD, anxiety (especially social anxiety), and obsessive compulsive disorder (OCD), in addition to increased rates of chronic health conditions (Colvert et al., 2022).  LGBTQ+ individuals, and especially transgender people, have higher rates of mental health challenges, especially anxiety, depression, and PTSD (Hall et al., 2020). 

Autism and Mental Health

Autistic people are 15 times more likely when compared to the general public to have a mental health concern, and more autistic traits scale with more mental health concerns (Colvert et al., 2022).  20% of autistics have anxiety diagnosis, 16.1% psychotic disorders, 14.9% personality disorders not otherwise specified, 13.7% have depression, 9% have OCD, 5% bipolar disorder and 4% have schizophrenia spectrum disorders, and an unknown number of autistic people are misdiagnosed with things like ADHD when an autism diagnosis would allow for more appropriate supports (Fusar-Poli et al., 2022).  3.2% of severe psychiatric inpatients have autism and it is estimated that between 2.4% and 9.9% of patients in psychiatric hospitals would qualify for an autism diagnosis, and without it, are being treated for misidentified problems and in ways that may not be as supportive as autism accommodations could be, and AMAB are more likely to get ADHD, psychosis, or conduct disorders, while AFAB are more likely to get depression, anxiety, and personality disorder diagnosis (Fusar-Poli et al., 2022).  31%-70% of autistic youth have at least one additional mental health diagnosis and 27%-41% have two or more diagnosis in addition to autism (Colvert et al., 2022).  Between 27% and 42% of autistic adults experience anxiety in their lifetime, 23% to 37% depression, 11% to 66% experience suicidal ideation and between 1% and 35% attempt suicide (Fusar-Poli et al., 2022).  Autistic people are at particular risk of early death and die an average of 16 years earlier than average, with the largest cause of early death being suicide (Moseley et al., 2021).  Autistic people are 7.55 times more likely to commit suicide and autistic adults without intellectual disability are nine time more likely to commit suicide (Fusar-Poli et al., 2022).

Autistic adults generally experience more physical, social, and psychological stressors than neurotypical adults and feel the impact of these stressors more intensely, which correlates to increased risks of mental health challenges (Moseley et al., 2021).  Autistic people experience sensory processing differences that vary in intensity and type by individual that often make cognitive, motor, and social skills tasks more challenging when also navigating a sensory issue such as tactile sensitivity, like tags in shirts, taste and smell sensitivity, such as aversion to someone wearing perfume, movement sensitivity, such as being on a high floor of a building or on a bus, auditory filtering, such as hearing the rattle of an air conditioning vent above all other input, hyposensitivity and sensation seeking behaviors, visual and auditory sensitivity, such as things being too bright or too loud, low energy, and weakness (Scheerer et al., 2021).  Chronic stress impairs executive function, self-regulation, and coping skills, which all can lead to more stressors, creating a cyclical problem (Moseley et al., 2021).  Autistic people are at particular risk of this kind of stress cycle because they often know they are missing cues, but are not sure which cues have been missed, leading to hyper-vigilance and increased response to stressors, such as worrying about what was said and if a corrective response is needed or would make things worse.  Loneliness, chronic anxiety, and lack of social supports increase the physical and mental health impacts of stressors, but for many autistic people, navigating loneliness is common due to social communication challenges and inability to maintain meaningful social relationships that cause autistic adults to be socially isolated (Moseley et al., 2021).  Loneliness in autism is related to higher perception of stress, suicide, self-harm, and mental health challenges and may be due to less ability to moderate stressors through social relationships and higher likelihood to use maladaptive coping strategies without social support (Moseley et al., 2021).

Autistic children are more likely to live in poverty, experience child sexual abuse, parent illness, substance abuse, and divorce, which all negatively impact mental health (Moseley et al., 2021).  Autistic people experience high rates of childhood bullying which can affect development of healthy social lives, relationship difficulties, and victimization (Moseley et al., 2021).  Autistic adults are also more likely to be socially stigmatized, be underemployed or unemployed, have contact with the criminal justice system, and be victims of physical, sexual, or emotional exploitation due to naivete (Moseley et al., 2021).  62% of autistic adults state that they are unable to secure appropriate supports for themselves (Stagg & Belcher, 2019).  Things that would not seem as stressful to the average person, such as changes in routine or plans can be highly stressful for an autistic person and cause days of rumination on the unpredictability of a situation experienced, a physically dangerous experience like a near car crash, or humiliating social situations long past (Moseley et al., 2021).  Autistic people’s perception of the intensity of interpersonal loss, entrapment, and role change or disruption negatively impact mental health, and these perceptions can be impacted by rigid thinking, lack of emotional awareness, poor coping skills, and self-advocacy skills (Moseley et al., 2021).  These being noted, it does appear that ritualistic behavior and routines associated with OCD diagnosis do lessen in intensity as autistic individuals grow into adulthood (Scheerer et al., 2021).        

Autism diagnoses in adults are made an average of 11 years after an individual first sought mental health support, 66.5% of autistic adults received other diagnosis before autism that were often symptomatic of untreated autism, such as anxiety, depression, psychoses, and personality disorders (Fusar-Poli et al., 2022).   Many late-diagnosed adults, often called the lost generation, were previously diagnosed with anxiety and depression and had feelings of isolation and alienation that allowed for an autism diagnosis to be perceived as a positive, allowing for identification of factors that individuals now can accommodate for (Fusar-Poli et al., 2022; Stagg & Belcher, 2019).  Individuals receiving a diagnosis later in life often are confronted with relief, but also a need to re-shape self-concept as autistic and change the ways that they have thought about themselves to make sense of life experiences including loneliness, difficulty making friends and maintaining relationships, feeling different from others, and ways to cope with stressors previously misunderstood outside the autism context (Stagg & Belcher, 2019).  While some late-diagnosed autistics viewed it as a positive, there is no unified autistic response, some people found the diagnosis disturbing and felt it impacted their self-esteem in negative ways, while others felt it was revelatory to gain new insights into their previously alien-seeming behaviors and emotional regulation challenges (Stagg & Belcher, 2019).  Autistic AFAB are diagnosed four years later in life on average than ABAB due less informed diagnostic practices for women and higher camouflaging skills that hide autistic traits at the expense of getting appropriate care, which is associated with worse health outcomes (Fusar-Poli et al., 2022; Moseley et al., 2021).  Autistic AFAB people are often better at camouflaging or masking to meet the demands of the neurotypical world than autistic men, but masking is associated with higher stress levels, exhaustion, and increased anxiety when compared to autistics who do not camouflage (Milner et al., 2019).  AFAB autistics are more likely to internalize their autistic traits, which can appear more similar to anxiety and depression, causing misdiagnosis, missed diagnosis, and inappropriate supports offered (Fusar-Poli et al., 2022).

Queer and Transgender Mental Health

Transgender people experience direct impacts to mental health, such as discrimination and hate crimes, and indirect impacts, including social exclusion, microaggressions, microinsults, and microinvalidations, with twice the rate of mental health diagnosis as compared to cisgender peers (Pinna et al., 2022; Wesselmann et al., 2022).  Transgender people have 1.5 times the number of mood disorders, 3.9 times the number of anxiety disorders, and 3.8 times the rate of psychotic disorders (Pinna et al., 2022) and experience heightened levels of discrimination with 63% experiencing one or more serious act of discrimination and 23% experiencing three or more acts of serious discrimination (Gleisberg et al., 2022).  Living through such stressors may prompt hyper-vigilance to be able to avoid stressors, hiding of gender identity, and internalization of negative views expressed towards them by society which can lead to mood disorders, substance use, and suicidal ideation (Pinna et al., 2022).  Social exclusion, including interpersonal rejection, being told their presence is undesired, or being laughed at, has negative physical and mental health impacts similar to the impact that loneliness has on autistic people (Wesselmann et al., 2022).  Transgender people also face discrimination in employment and housing and are more likely to be unemployed, possibly leading to higher rates of sex work, particularly for transgender women, and substance use in the transgender population, with 75% using alcohol and one third using multiple substances (Pinna et al., 2022).  Chronic exclusion can lead to increased anger, sadness, devaluation of self, feelings of inhumanity, depression, alienation, suicidal ideation, and self-harm (Wesselmann et al., 2022). 

One fourth of transgender youth experience clinical levels of anxiety and depression, one third experience family dysfunction, and one-eighth of transgender youth attempts suicide, thirteen times more often than cisgender peers (Pinna et al., 2022).  Queer and transgender people are often navigating their intersectional identities of race, gender, sexuality, and disability and often need to decide which identities to express and which may not be safe or welcomed identities to express, at any given time ,of their multiple marginalized identities (Garvey et al., 2019).  While previous studies have demonstrated the stressors that transgender women experience due to safety concerns, transgender men often experience heightened social anxieties due to fear of not being seen as masculine or not having learned the male social role well enough (Nobili et al., 2018).  While mental health care providers are often open to providing gender-inclusive care, fewer than a third of psychologists say they have received appropriate training or experience needed to do so, leading to a high unmet need in care (Pinna et al., 2022). 

Controversy exists for some families of transgender youth in thinking their transgender identity is a phase, some families do not allowing gender affirming care, medical, or social transitioning, and many gender creative youth are shamed for their behaviors, which have negative mental health impacts (Ashley, 2022).  Social transitioning, even without medical transitioning of any kind, reduces anxiety and depression to rates comparable to cisgender peers, medical transition is not necessary to reduce mental health disparities (Ashley, 2022).  Transgender adults are not uniform in manner or desire for transition, 22% are undecided on or do not want hormone replacement therapy, and about one third of transgender individuals identify as non-binary and may have no desire for medical transition at all (Ashley, 2022).  That being said, between 96.5% and 100% of youth who used hormone blockers to prevent their assigned sex hormones from causing puberty perused gender replacement hormone therapy later and 96% of youth continue to refer to themselves as transgender into late adolescence (Ashley, 2022).   
 
Another identity more common amongst autistic adults is asexuality, or having little to no drive for sexual relations, which became more common and better understood with the proliferation of social media and online communities (Mollet, 2023).  People identifying as asexual often feel unwelcome in LGBTQ+ communities, who are often celebrating their sexual attraction to same sex, multiple genders, or transgender identities and can feel lack of belonging and invalidation (Mollet, 2023).  Asexuality has been met with dehumanizing views from peers that are not directed at lesbian or gay identities anymore, and asexual people are often avoided by straight and gay peers alike (Mollet, 2023). Some asexual people fear disclosing their identity because they do not know how it will be perceived, some people have been cut off from friends and family when disclosing asexual identity, leading to negative well-being and interpersonal relationship challenges (Mollet, 2023).
​
Disproportionate Physical Health Impacts of Being Queer or Transgender And Autistic
​
Autism And Physical Health Impacts

Autistic adults die an average of 16-38.5 years earlier than neurotypical adults and autistic adults, especially autistic AFAB adults, have trouble with eating a healthy diet, weight (both over and underweight), exercise, sleep troubles, have elevated rates of diabetes, cancer, respiratory conditions, and heart disease (Doherty et al., 2022; Weir et al., 2021).  Eating well can be a challenge for autistic adults as up to 70% of autistic children have food challenges due to sensitivities, allergies, and inflexibilities, including avoidant restrictive food intake disorder (ARFID), anorexia, pica, and food refusal, and changing habits in adulthood is not always easy to do (Weir et al., 2021).  Exercise and sleep are areas of concern, autistic children engage less in outdoor activities than neurotypical peers, autistic AFAB exercise even less as they get older, and autistic people are more likely to have sleep disorders, the severity of which scale with challenging autistic traits (Weir et al., 2021).  Sleep challenges in autistic adults are associated with unemployment, increased mental health challenges, and sedentary behavior, which may increase physical health challenges and obstruct social engagements, making healthy sleep habits and management of autistic traits more difficult to attain (Weir et al., 2021). 

Autistic adults, especially AFAB, are more likely to have chronic health troubles including chronic fatigue syndrome (CFS), fibromyalgia, chronic migraines, irritable bowel syndrome (IBS), restless leg syndrome (RLS), and temporomandibular joint disorder (TMJD), collectively referred to as central sensitivity syndrome (CSS) disorders, as all of these disorders include chronic pain, fatigue, and hyper-sensitization (Grant et al., 2022).  60% of autistic adults demonstrate clinical signs of having CSS, compared to up to 20% of the general population, and the CSS collection of health challenges scale with increased sensory sensitivity, greater anxiety, and less well-being (Grant et al., 2022).  Autistic adults and people who experience CSS are associated with mental health challenges, trauma, discrimination, and lack of access to or poor experiences with healthcare (Grant et al., 2022).  Autistic adults are more likely to have joint hypermobility disorders that often co-occur with CSS and higher rates of sensory sensitivity and anxiety associated with autism increase rates of CSS (Grant et al., 2022).  Anxiety, stress, and PTSD, all more common to autistic people, may not only increase rates of CSS, but severity of the symptoms, and may be made worse by less developed coping mechanisms in autistic people (Grant et al., 2022).  Autistic AFAB are more likely than autistic AMAB or neurotypical women to experience higher sensory sensitivities (Grant et al., 2022).  Autistic adults are also more likely to have dysautonomia and mast cell activation syndrome (Grant et al., 2022).

Chronic stress can suppress the immune system, impact brain plasticity, epigenetic expression of genes, increase cardiovascular, autoimmune, and neurodegenerative concerns, and can cause over sensitization of the stress response (Moseley et al., 2021).  Long-term activation of the stress response can cause many health concerns and autistic adults are more likely to experience epilepsy, diabetes, gastrointestinal concerns, hypertension and immune system complications (Moseley et al., 2021).  Causes of adverse health outcomes are partly caused by challenges with social-emotional responses such as maintaining relationships, but can also be attributed to long-term medication use, health care access barriers, as well as genetic causes (Moseley et al., 2021).  The perceived severity of physically dangerous stressors such as an armed robbery at a convenience store negatively impacts the physical health of autistic people (Moseley et al., 2021).

Accessing appropriate healthcare is more difficult for autistic adults, which may be part of the reason autistic adults experience adverse health outcomes as compared to neurotypical adults (Doherty et al., 2022).  80% of autistic adults reported difficulty going to a general practitioner, 72% have difficulty deciding if they should go to the doctor, 62% have difficulty making appointments on the phone, 56% feel they are misunderstood, 53% have difficulty communicating with their doctor, and 51% have challenges with the waiting room (Doherty et al., 2022).  Doherty et al. (2022) also found that autistic people are twice as likely to use emergency room services, are more likely to die in the ER, and are three times as likely to need inpatient care due to not getting early preventative care, not attending specialist referral appointments, and untreated life-threatening conditions.  They also found that these numbers may be exacerbated because only 20% of healthcare providers said that they had confidence in being able to communicate with and identify and implement appropriate accommodation for autistic adults.  Communication problems with medical providers are complicated by anxiety and sensory issues associated with autism and some autistic people do not self-disclose autism to their doctors, preventing access to appropriate accommodations and care (Doherty et al., 2022).

Queer and Transgender Physical Health Impacts

LGBTQ+ people have higher rates of health challenges and face barriers to accessing appropriate care due to their marginalized identities (Hall et al., 2020).  60% of trans and non-binary adults reported having a long-term health condition, with autism, dementia, learning disability, and metal health being the most disproportionately reported, and stroke, diabetes, and kidney or liver problems increasing with age at disproportionate rates compares to straight cisgender individuals (Saunders et al., 2023).  LGBTQ+ people are less likely to have a regular medical provider that they see and are more likely to be homeless, which is associated with negative health impacts (Saunders et al., 2022).  Trans and non-binary adults report having poor experiences in healthcare than straight cisgender adults, but these results are mitigated when they receive treatment from healthcare providers knowledgeable about transgender health (Saunders et al., 2023).  Health disparities, especially mental health disparities between transgender and cisgender people decrease with age, possibly suggesting that as they age, transgender people develop coping skills, find better access to health care, or feel better the longer they are on gender affirming therapies (Saunders et al., 2023).

Exposure to chronic environmental stressors and discrimination has negative health impacts on transgender people (Pinna et al., 2022).  10% of transgender people experience sexual assault due to their transgender identity, 80% reported verbal abuse, 60% sexual abuse, and more than 30% reported physical abuse of some kind (Pinna et al., 2022).  Transgender adults as compared to cisgender adults have higher rates of trauma, PTSD, anxiety, depression, and physical health concerns.  Transgender women have a higher mortality rate due to suicide, heart disease, lung cancer, and HIV (Pinna et al., 2022). 

Discussion for Section

Physical and mental health are impacted for individuals who are both autistic and LGBTQ+ and there is a disproportionate impact on trans autistic health.  Queer autistic people face a double-marginalization and navigate discrimination from being LGBTQ+ and from being autistic, leading to worse mental and physical health than either straight cis-gender autistic people or LGBTQ+ neurotypical people (Hall et al., 2020).  Autistic LGBTQ+ adults face exponential challenges due to the social communication challenges associated with autism directly impacting the individual’s ability to secure gender affirming care, advocate for themselves in mental health care, and navigate personal and professional relationships.  Transgender autistic AFAB often experience increased social challenges associated with mental flexibility, social skills, and switching attention, which often leads to heightened social anxiety health impacts (Nobili et al., 2018). 

LGBTQ+ autistics are twice as likely to have a mental health concern, have more than double the days of poor physical health, smoke ten times as much, have higher unmet healthcare needs, and 37% have been refused care from a healthcare provider compared to 20% of straight cisgender autistics (Hall et al., 2020).  Autistic transgender people experience minority stressors due to challenges from these intersecting identities, including challenges securing gender affirming health care due to their autism diagnosis (Cooper et al., 2022).  Autistic transgender adults experience more discrimination than transgender neurotypical or autistic cisgender individuals (Cooper et al., 2022). 

Much of the research used looks at either LGBTQ+ or autistic adults and few studies have been done looking at the cross-section of individuals who are both.  Much of the research looking at trans autistic people is done in youth hospitals, which may skew the results.  More research is needed on the experiences of transgender AFAB and mental health impacts from stressors.  Research is needed to determine if a large percentage of transgender people are autistic or if trauma that transgender people often experience mimics autistic traits as social anxiety and difficulty switching attention can be caused from trauma and autism (Nobili et al., 2018).  Some studies on autistic adults screen for adults with autism but without intellectual disability and some studies include both groups in studies, it is unclear if autistic adults without intellectual disability may yield very different research results than autistic adults with intellectual disability, but is there are large differences, it would be good to have results with the screen in place (Weir et al., 2021). 

While there has been adequate research on autistic or LGBTQ+ disproportionate impacts, there is not a wealth of research focusing on autistic LGBTQ+ individuals.  Many of the studies focusing on autism and mental health are done with clinical samples of more intense support-need individuals and of children or autistic youth with autistic adults not as well covered (Colvert et al., 2022).  Another issue is survey results are often completed by parents or caregivers of autistic people and not by the autistic person themselves, which may result in inaccurate information being presented (Scheerer et al., 2021).  Although there are a number of transgender and non-binary researchers, the majority of research on transgender issues is done by cisgender people, which may bring about misunderstandings or inaccurate concepts of gender identity, such as confusing sex, sexuality, and gender (Gleisberg et al., 2022).  There is a need for research questions to be phrased in neutral terms as some people from marginalized identities will not respond to survey questions that are further stigmatizing, for example, if answering a question that is phrased in a stigmatizing way, people who may identify with what is being asked may decline to respond because they don’t like the way the question makes them feel, which prevents accurate data collection (Saunders et al., 2022), this is particularly true for autistic individuals who may be more sensitive to their inability to control their image and perception by society than neurotypical people. 

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Sex, Gender, And Sexuality Diversity Among Autistic Adults
by Lisa Macafee

Autistic people have been shown through numerous studies to have higher rates of transgender, non-binary, gender diversity, and gender non-conforming identities and there are also heightened rates of autistic traits in the transgender community.  Gender variance in autistic individuals assigned female at birth (AFAB) have the highest rates of gender, sex, and sexuality variance (Kung, 2020).  Biological sex differences present among autistic adults assigned male at birth (AMAB) and AFAB are discussed, including sex trait atypicality and intersex traits more frequently present among AFAB autistics.  Sexuality in autistic adults, including increased rates of asexuality, a-romanticism, pansexuality, demisexuality, bisexuality, gay, lesbian, same-sex-loving, and polyamorous identities is discussed. 

Autism and Gender Diversity

Gender for autistic people is often perceived as a spectrum of many genders rather than a male/female binary and with an understanding that a person’s gender identity will develop differently due to the biological nature of the person, the culture they were raised in, how supported they are in their home, and will change over time and should not be considered static (Ehrensaft, 2018).  Autistic people are six to eight times more likely to be transgender or gender non-conforming (Warrier, et. all, 2020) and transgender people are three to six times more likely to be transgender (Cooper, et. all, 2022).  11.3% of autistic adults express gender variance as compared to 0.7%-5% of the neurotypical population (Pecora, et. all, 2020).  These differences are thought to be due to autistic resistance to social conditioning around gender and not feeling compelled to conform to gender norms as neurotypical individuals may feel the need to do (Cooper, et. all, 2022).  Autistic individuals are 7.76 times more likely than neurotypical individuals to wish they were the opposite sex from what they were assigned at birth, with about 5% of autistic people wishing they were opposite gendered than they are (Janssen, et. all, 2016).  Some of this gender flexibility may be due to rigid thinking associated with autism and a logical deduction that if gender expectations are not 100% met for the autistic person’s assigned sex at birth, then that logically may cause them to adopt a transgender or non-binary gender identity because they don’t fit with gender stereotypes (Pecora, et. all, 2020).

Gender Diversity and AFAB Autistics

Autistic people are more likely to be gender non-conforming or transgender and often experience gender stress and social anxiety due to their gender identity (Ehrensaft, 2018).  Autistic people may not experience gender at all, they may express and experience gender differently as a neurodivergent individual and while understanding they are told they are a boy or a girl, may have very little affinity or alignment with gendered terms until puberty forces a physical reckoning with gendered roles and often a consequent rejection of expectations (Ehrensaft, 2018).  AFAB autistic adults have the highest rates of gender flexibility and often present a masculinized autism profile, while AMAB autistics did not show a feminine autism profile (Kung, 2020).  Gender roles can be confusing or irrelevant to autistic people, and some autistic AFAB people adopt masculine presentation because it is simpler, involves less social navigation, and is easier to navigate than wearing make-up and fashionable women’s clothing (Milner, et. all, 2019).  Impaired social navigation associated with autism may have led to difficulties for AFAB autistics to socialize with women and increase the likelihood of socializing more with men and associating the self more with a male gender identity (Jones, et. all, 2012).  Lastly, AFAB autistics often experience autism related challenges in socialization that make it difficult to maintain friendships with neurotypical girls, which often leads to friendships with men because they typically engage in less small talk, emotional discourse, are more socially forgiving than women, leading to a more male gendered experience (Milner, et. all, 2019). 
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15% of autistic adults report a transgender or non-binary gender identity with 21.6% of AFAB autistics reporting a transgender identity with only 4% of transgender AFAB autistic people identify on the male/female binary, 96% of AFAB transgender autistics identified as non-binary, which leads to speculation regarding why gender identity leans away from the binary in AFAB autistics (Walsh, et. all, 2018).  The gender flexibility that autistic people often experience aligns with the fact that non-binary people have the highest rates of autism as compared to all other gender identity groups, the resistance to social conditioning that autistic people often experience may lend to their adopting unconventional gender identities that neurotypical people may not have felt comfortable acting as, even if they felt aligned to that gender identity (Walsh, et. all, 2018).  It could be simply that autistic people are less prevented from expressing their inner transgender or non-binary identity due to less social constraints and conditioning than neurotypical people.  Autistic AFAB people may express their gender identity in less typical ways due to the lack of inherent social expectation internalization, whether they are transgender (such as being more likely to be non-binary), or if they are cisgender, by being gender non-conforming and engaging in masculine behaviors or gender performance because it is more comfortable or less demanding than the female gender role performance expectations (Janssen, et. all, 2016).

Autism and Transgender Identities

Transgender people overall are about eight times more likely to be autistic than the cisgender population, and youth are more likely to identify outside the gender male/female binary and embrace a gender spectrum instead of a gender binary (Ehrensaft, 2018).  Transgender adults overall are 3.03-6.36 times as likely to be autistic as compared to cisgender people and also reported they did not feel the need to conform to gender stereotypes for their gender identity (Cooper, et. all, 2022).  Transgender AFAB men are 11 times more likely to qualify for an autism diagnosis than cisgender men (Jones, et. all, 2012).  Transgender and non-binary AFAB adults are twice as likely to qualify for an autism diagnosis compared to cisgender women (Nobili, et. all, 2018).  More than a third of transgender AFAB people meet autism diagnostic cut-off rates (Nobili, et. all, 2020), which is much higher than the less than one percent rates of transgender AMAB and cisgender people (Cooper, et. all, 2022; Heylens et al., 2018; Jones et al., 2012; Nobili et al., 2018). 

Transgender men scored 9.02 standard deviations higher and non-binary AFAB scored 8.38 standard deviations higher on the autism quotient survey than cisgender people (Kung, 2020).  15% of transgender men, 19% of non-binary AFAB, 3% of transgender women, and 2% of non-binary AMAB meeting the cut-off point for a likely autism diagnosis (Kung, 2020).  Autism is diagnosed in 6% of transgender individuals, which is six times higher that the typical rate of autism and if criteria is expanded to look at a broader autism phenotype, 19.4% of gender diverse youth have elevated autistic traits (Heylens, et. all, 2018).  Transgender and gender diverse individuals have high rates of autism, other neurodevelopmental disorders such as ADHD, and higher rates of psychiatric diagnosis such as anxiety, depression, obsessions compulsive disorder (Cooper, et. all, 2022; Warrier, et. all, 2020).

Autism and Sexuality

Autistic adults, especially those AFAB, show increased flexibility in sexuality, which can be thought of as a combination of sexual identity, sexual attraction, and sexual contact (Pecora, et. all, 2020).  15%-35% of autistic adults overall reported exclusively gay or bisexual orientations compared to 5.4% of neurotypical adults (Pecora, et. all, 2016).  Some propose that the lack of internalized social rules autistic people experience allows them to engage in acts where neurotypical people prevent themselves from acting differently than they have been taught is socially acceptable.  In a sense, not internalizing social norms may allow autistic people to be more flexible in their thoughts and actions than neurotypical adults.  Autistic adults are associated with higher rates of gender and sexuality diversity, identities that have both increased in frequency, possibly due to increased ability to build online communities that normalize differences and allow discourse and healthy identity building for marginalized groups (Øien, et. all, 2018).

Autism and Lesbian, Gay, Bisexual, and Pansexual Identities

AFAB autistics identify as bisexual four times more frequently than neurotypical women and this is more frequently combined with masculine gender role expression and more of a male gender identity (Pecora, et. all, 2016).  In addition, AFAB autistics are 2.39 times more likely to be gay or lesbian and 2.33 times more likely to be bisexual as compared to neurotypical women (Pecora, et. all, 2020).  AFAB autistic people are more likely to be attracted to multiple genders and be gender non-conforming themselves (Dewinter, et. all, 2017).  Gender flexibility in the self could influence sexuality in that if the individual themself does not abide by binary gender roles, it may be easier to disregard or expand upon which gender a person is attracted to.  About half of AFAB autistic adults are in relationships, most living with their partner (Dewinter, et. all, 2017) but many autistic people experience challenges finding and maintaining sexual and romantic partnerships (Pecora, et. all, 2020).  Many autistic people turn to the internet for sex education, which can further harm their understanding of appropriate behavior in relationships an encourage inappropriate behaviors (Maggio, et. all, 2022).  This lack of sexual access and information could influence some autistic people to broaden their search for partners into genders that, if they were more socially able to find partners, they would not have considered, leading to sexuality flexibility, and in others can lead to inappropriate or dangerous sexual activity (Gilmour, et. all, 2012).  Autistic traits seem to complicate sexual orientation and identification or make it easier to identify outside typical expectations (Maggio, et. all, 2022).  Individuals who identify with bisexual (attracted to both men and women) or pansexual (attracted to all genders) identities often are aware of their sexuality later than gay or lesbian individuals, which could add to confusion or flexibility for autistic adults (Bishop et. all, 2020). 

Autism and Asexual, Aromantic, Polyamorous, and Other Queer Identities

AFAB autistics have less sexual desire, less sexual and romantic functioning, less engagement in sexual activities, combined with higher sexual anxiety, and higher sexual problems when compared to neurotypical women (Pecora, et. all, 2020).  Asexuality, defined as a lack of sexual desire, and objectophilia, a sexual desire for inanimate objects, are more common identities for autistics (Maggio, et. all, 2022).  One study estimated that up to 33% of autistic adults appeared to be asexual, but whether this was situational, or a true lack of desire was not determined, asexual identities may be reported due to difficulties in social communication, challenges attaining and maintaining relationships, and sensory challenges associated with autism rather than lack of desire (Gilmour, et. all, 2012).  More recent studies found autistic adults have the same sexual desire as neurotypical adults (96% of both have sexual desire) (Maggio, et. all, 2022), and autistics AMAB have been found to engage in sexual activity and have more desire as compared to AFAB autistics (Pecora, et. all, 2016).  Autistic lesbian and gay AFAB people are 3.17 times more likely than straight autistic AFAB people to experience unwanted sexual behavior and sexual victimization due to being overly trusting or not picking up on social cues that neurotypical women may perceive more readily as red flags (Pecora, et. all, 2020).  Negative sexual experiences may factor into autistic AFAB people identifying more readily with asexual and aromantic identities, as negative sexual experiences can impact a person’s desire or willingness to engage in situations that have previously been harmful.

Autism and Sex Differences

Contemporary sex definitions are less binary and more malleable than the traditional male/female presented, and youth are more likely to see sex and gender as a spectrum, rather than a binary (Schudson, et. all, 2019).  Considering the ability for people to change their biological sex markers through surgery, it is understandable that people are considering sex as a spectrum instead of a static binary.  Add to this a growing awareness of intersex identities, including hormonal, chromosomal, or secondary sex characteristic development not matching the sex assigned at birth, and sex identity can become much more complex for autistic people who have a higher rate of androgynous features (Roen, 2019).  Research in transgender individuals demonstrates that there may be a biological basis for gender identity that is separate from physical anatomy, such as differences in neuron number and volume in the stria terminalis (Walsh, et. all, 2018).  There are a number of physical anomalies associated with autism that may also influence sexuality and gender identity, including brain function differences, biological sex differences, poly-cystic ovarian syndrome (PCOS), and androgen differences (Gasser, et. all, 2022). 

Biological Sex Differences in Autism

Autistic people have a number of atypical physical traits in addition to their neurology that can complicate identity.  Their hypothalamus, pituitary, and adrenal glands often function at an impaired rate (Gasser, et. all, 2022).  There is an association noted between high birth weight and increased rates of gender non-conformity and autism (Heylens, et. all, 2018) and transgender AFAB autistics have autism profiles more similar to cisgender men than women, which imply causal or correlating factor of gender from autism (Nobili, et. all, 2020).  Autistic brains have less connectivity and dimensional variation from typical brain connectivity, but it is not clear whether these patterns develop because of autism or cause autism themselves (Paul, et. all, 2021).  Higher autistic traits correlate with higher regional structural brain network efficiency, supporting rigidity of logical thought, routines, and structure common to autism along with difficulty with processing new ideas or conflicting information (Paul, et. all, 2021).  Other physical characteristics more common among AFAB autistic adults are more masculine digit ratios, the ring finger being longer than the index finger, and higher facially masculine traits as compared to neurotypical adults (McKenna, et. all, 2021).  Conversely, some autistic men demonstrate more feminine facial features and digit ratios, suggesting androgynous features are an indicator of autism in both AMAB and AFAB adults (McKenna, et. all, 2021).  Facial masculinity has been found to be predictive of neurodevelopmental conditions and both facial masculinity and masculine digit ratios are associated with impaired social functioning (McKenna, et. all, 2021)

Low levels of progesterone are associated with autism and can lead to hirsutism, asexuality, bisexuality, PCOS, irregular menstrual cycle, dysmenorrhea, and higher rates of ovarian, uterine, and prostate cancer in families (Gasser, et. all, 2022).  PCOS, the presence of cysts on the ovaries with increased testosterone levels, and delayed menarche are two testosterone linked medical conditions that are present at elevated rates among AFAB autistics (Jones, et. all, 2012).   11.6% of mothers of autistic children had PCOS while they were pregnant, lending credence to male hormone levels in utero increasing the likelihood of autism (Shah & Bobade, 2018).  Higher testosterone levels in autistic AFAB people may contribute to associating more with male gender roles (Jones, et. all, 2012). 

Androgen and Testosterone Pre-Natal Exposure

Steroid production, especially androgen hormones are atypical in autistic people, with less progesterone and increased androgen levels, and mothers of autistic people reported low progesterone levels during pregnancy (Gasser, et. all, 2022).  Higher rates of male hormones in utero are linked to higher rates of autism diagnosis and higher rates of gender diversity (Heylens, et. all, 2018; McKenna, et. all, 2021).  Testosterone affects social connections and higher testosterone levels can mean less interest in socializing (Nobili, et. all, 2020) while lack of progesterone can inhibit a person’s ability to interact well to support well-being of others (Gasser, et. all, 2022).  In addition to pre-natal androgen exposure, there are also links between testosterone in adults and autism related traits, including impaired language skills (McKenna, et. all, 2021).

The “extreme male brain” theory of autism has been supported in previous studies showing higher androgen exposure rates are associated with increased systematizing tendencies, less typical female gender role presentation, reduced ability to take another person’s perspective (theory of mind), and decreased empathy (Kung, 2020).  For some AFAB autistics, increased rates of testosterone lead to an androgynous physical development that can lead to discrimination and harassment, cause confusion about gender identity, or lead to adopting a transgender or non-binary identity (Jones, 2021).  Another theory to explain AFAB autistic sexual and gender fluidity is heightened prenatal testosterone often present in autistic pregnancies leading to more masculine traits, presentation, gender identity, and sexuality (Pecora, et. all, 2020).  Interestingly, increased pre-natal testosterone is also linked to gay identity development and feminized gender identity for autistic cisgender men (Pecora, et. all, 2020). 

Discussion for Section

Gender non-conformity is prevalent among autistic adults, especially those AFAB, who have higher rates.  Transgender people have higher rates of autism than the cisgender population, with transgender men and non-binary AFAB people having the highest rates of autistic traits (Nobili, et. all, 2018).  A limitation of many studies is relatively small sample sizes in studies with interviews from one study with 21 individuals (Cooper, et. all, 2022) or 22 individuals (Strang, et. all, 2018), and quantitative studies often having sample sizes of less than 100 transgender individuals (Heylens, et. all, 2018; Kung, 2020; Walsh, et. all, 2018).  Many of the research studies looking into gender diversity and autism used the Autism Quotient, a free self-reporting online assessment to determine the degree of autistic traits, which can yield distorted results if respondents mask and change answers to fit expectations or are unsure or ashamed to report their autistic traits (Kung, 2020). 

There is some contention as to the correlations between autism and gender diversity from a transgender perspective, some theorize that autistic traits such as social anxiety, deficits in communication, and rigid thinking may be mimicked by trauma and that transgender people may simple have elevated autistic traits and not be autistic (Nobili, et. all, 2020).  Many studies on the brain function of autistic transgender people could be distorted by elevated rates of anxiety and depression and many of the studies on transgender autistic people viewed transgender identities not as a different and valid way to live but under the gender dysphoria deficit framework that may skew results from research participants who do not feel as comfortable sharing if their words are portrayed in a negative light and may skew interpretation of data collected (Walsh, et. all, 2018).

There is also controversy over the extreme male brain theory of autism, some studies have not been able to verify the correlation between pre-natal androgen exposure and increased rates of autism (Kung, 2020; Heylens, et. all, 2018).  Digit ratio as a measure of androgen exposure may not be a reliable measure as it is found that digit rations tend to become more feminized with age and inconsistent results are been found, some indicating that most autistic people have masculine digit ratios, and some suggesting that AFAB autistics have masculine and AMAB autistics have feminine digit ratios (McKenna, et. all, 2021).  Another concern is that much research on autistic populations was sampled from group homes, which may skew results, as group home residents are more reliant on their caregivers and may internalize the viewpoints of those in authoritative positions (Gilmour, et. all, 2012).

An area that research does not well cover is why AFAB autistic people have higher rates of gender and sexuality divergence.  An area of need is in researching non-binary identities and autism, much research is still presented using gender binaries and may include transgender men and transgender women,.  As autistic people lean more towards the gender spectrum instead of binary gender identities, and may not identify with any gender at all, there is not a strong body of work researching non-binary identities (Ehrensaft, 2018) even though up to 3.9% of the adult population identify as non-binary (Walsh, et. all, 2018).  Another area of need in research is in AFAB autistics in general, as most research has relied on the autism diagnosis rates of four males to one female (although rates are estimated to be more accurate at three to one), most research is centered on the male autistic profile and female autistic profiles are underdiagnosed and less understood (Milner, et. all, 2019; Walsh, et. all, 2021).   

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Varun, W., Greenberg, D. M., Weir, E., Buckingham, C., Smith, P., Meng-Chuan, L., Allison, C., & Baron-Cohen, S. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature Communications, 11(1)https://doi-org.csu.idm.oclc.org/10.1038/s41467-020-17794-1

Walsh, R. J., Krabbendam, L., Dewinter, J., & Begeer, S. (2018). Brief report: gender identity differences in autistic adults: associations with perceptual and socio-cognitive profiles. Journal of Autism & Developmental Disorders, 48(12), 4070–4078. https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3702-y

Warrier, V., Greenberg, D. M., Weir, E., Buckingham, C., Smith, P., Lai, M. C., Allison, C., & Baron-Cohen, S. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature communications, 11(1), 3959. https://doi.org/10.1038/s41467-020-17794-1

GENDER DIVERSITY AND AUTISM:
LITERATURE REVIEW OF TRANSGENDER / NON-BINARY AND AUTISM RESEARCH
by Lisa Macafee

​CHAPTER ONE
OVERVIEW OF THE STUDY
This is a systematic literature review on the relationship of autism and gender diversity, specifically, looking into any heightened gender ambivalence autism produces and correlations in gender diversity, intersex identities, and queer sexualities.  Living in the intersecting identities of autistic and queer / transgender results in stigma and marginalization to the individual that may be exacerbated by stigmatizing treatment from mental and physical health care providers who may not well understand the needs of this population (Hall et al., 2020). This cultural competence gap is perpetuated in part by neglecting to include the voices of transgender autistic people in research so causality may be assumed about transgender autistic people by neurotypical cisgender researchers who themselves may not understand their research subjects (Strang et al., 2019).  This literature review includes an analysis of previous research looking at autistic people and their understanding and relationships with their gender identity, sex, and sexuality to bring forward perspectives as to causality of the correlation between autism and gender non-conformity and/or queerness (Creswell, 2018).  The focus of this literature review is on gender non-conformity in autistic individuals assigned female at birth (AFAB) (Walsh et al., 2018).  Autistic women and autistic transgender people are such a small percentage of the population, their intricacies and needs in treatment often go ignored or are lumped in with other similar populations and will benefit from focused attention. 

Background of the Problem

Heightened autistic traits have been found among individuals seeking gender related treatment (up to 35%) and among those who identify as transgender or non-binary (up to 15%) (Kung, 2020; Nobili et al., 2018; Walsh et al., 2018).  Of the adult transgender population, 14% are diagnosed as autistic as compared to 0.62% of the general population and 94% of transgender autistics identify as non-binary (Walsh et al., 2018). Walsh et al. (2018) posit autistic individuals reject social conditioning to subscribe to a binary socially imposed gender system when compared to neurotypical peers who may subscribe more to the gender schema and may be more likely to suppress gender incongruence to conform.  In one study, 15% of autistic people self-reported a transgender or non-binary identity, with AFAB participants reporting transgender identities 21.6% of the time compared to those assigned male at birth (AMAB) reporting transgender identities 7.8% (Walsh et al., 2018).  Highest rates of autistic traits were found among transgender individuals AFAB (45% as compared to 30% for transgender AMAB) (Nobili et al., 2018). 

Autistic individuals who identify as transgender, non-binary, or gender non-conforming typically experience increased stressors produced from their intersecting identities, primarily difficulties communicating needs around their gender and challenges navigating the complexities of gender expression and identity (Strang et al., 2018).  Research on autism and gender diversity done without the voices of those autistic gender-diverse individuals poses problems in data analysis if information is misunderstood or misconstrued (Strang et al., 2019).  Attempts to explain the correlation between autism and gender divergence can be harmful to the population if inaccurate or further marginalizing ideas are proposed, for example, some researchers assert autistic transgender individuals may be so only due to sensory difficulties making wearing dresses more preferable for AMAB autistics, which negates their agency and identity as transgender women, attributing their gender identity purely to sensory issues (Maroney & Horne, 2022).  It is important to include the voices of those being studied in the research being done for accurate conclusions to be made (Strang et al., 2019). 

Health care providers have been seeing a higher prevalence of autistic traits among individuals seeking gender affirming care: 14% of those seeking gender affirming care were diagnosed autistic compared to an adult average of 0.62% (Walsh et al., 2018).  Autistic individuals are more likely to be transgender for many reasons, one of which being an inherent resistance to social conditioning and expected gender roles allowing for autistic individuals to disregard the binary gender system and reputation management in which many feel the need to comply (Walsh et al., 2018).  The most significant correlation of autism and gender was between AFAB autistics identifying as non-binary; only 6% of transgender autistics identified as binary men or women; it seems to be autistic individuals, especially AFAB, are more open to examining their gender identity, less likely to feel pressure to conform to gender norms, and 15% identify as non-binary / transgender compared to 3.9% of the general population (Walsh et al., 2018).

There are also elevated autistic traits in transgender people, especially those AFAB, of which; 45% of AFAB transgender people have significantly higher autistic traits than the general population as measured by the Autism Quotient (AQ) as compared to 30% of transgender people AMAB (Nobili et al., 2018).  Some research posits transgender people might score higher on the AQ because they often experience more social, health, psychological isolation, pervasive anxiety, and low self-esteem (Nobili et al., 2018).  Nobili et al. (2018) posed an “extreme male brain theory” of autism which states, autistic individuals may have been exposed to heightened levels of testosterone in utero causing a drive to systematize, to explain why autism occurs more in men than women (4:1 ratio) and why many AFAB autistics are transgender.  Another study showed 15% of transgender men and 19% of AFAB non-binary people meeting autism cut-offs rates while those AMAB did not meet significant cut-offs for autism leading researchers to theorize autistics may have more of a testosterone-influenced brain influencing those AFAB to present more masculine (Kung, 2020). 

Autism is more common among transgender individuals; about 15% of autistic individuals identify as transgender, non-binary, or gender non-conforming, much higher than the general transgender rates in the population (Maroney & Horne, 2022).  Autistic transgender people experience intersectional stigmas of ableism and cissexism including barriers to accessing health care, discrimination, and access challenges (Maroney & Horne, 2022); 58.2% of therapists said they know about examples of bias in treatment from their peers towards the queer community, only 34% of psychology graduates reported diversity education as part of their training, and LGBTQ+ clients have reported perceptions of heterosexism from therapists and dissatisfaction with their treatment (Carroll & Gilroy, 2001).  Autistic people AFAB are 1.68 times more likely to be transgender, 2.39 times more likely to be gay, and 2.33 times more likely to be bisexual when compared to non-autistic women (Pecora, 2020).  Autistic gay women reported experiencing regrettable sexual experiences 2.72 times as often and unwanted sexual behaviors 3.17 times as often as autistic heterosexual women while autistic women overall experienced unwanted sexual experiences 2.98 times more than non-autistic women (Pecora, 2020).  It is important for mental and physical health care practitioners to have accurate information on marginalized populations to be able to best support them.  It is estimated autistic AFAB people have these higher rates of adverse sexual experiences partially due to the higher rates of sexual victimization among gender diverse populations, as transgender women reported regrettable sexual experiences 4.01 times more often than cisgender women, and other causes of aversive experiences are linked to autistic people’s lessened ability to perceive red flags due to social impairment in relationships or communicate needs as well as non-autistic people (Pecora, 2020). Add to this the additional struggle women are often missed in diagnosis for autism, it is estimated the true ratio of autism in men to women is 3:1 and not 4:1 as the rate diagnosed because many diagnosing practitioners are not adept at diagnosing women; (Zener, 2019).  Autistic women diagnosed after age 18 are more likely to be diagnosed with PTSD (up to 17% of autistic women) due to trauma exposure, depression, and misdiagnosis, more have eating disorders (up to 30% of women with anorexia qualify for an autism diagnosis), and many struggle with diagnosis of borderline personality disorder, obsessive compulsive disorder, burnout, or failure to launch challenges (Zener, 2019). 

For many neurodivergent people, their identities are already seen as “queer” by mainstream society, as disability has been pathologized by medicine and religion as other and less than, which have systemic impacts on the transgender autistic community (Abrams & Abes, 2021).  According to Hall et al. (2020), LGBTQ+ autistic people experience more than double the rates of mental health concerns (78.9% versus 34.3%) and days of bad physical health per month (11.1 versus 5.1).  They smoked almost ten times more (26.3% versus 2.9%), had higher unmet health care needs (73.7% versus 43.8%), and had been refused health care more (35.7% versus 20%) when compared to their cisgender/straight autistic peers (Hall et al., 2020).  Transgender people experience heightened levels of mental health problems, notably in anxiety, depression, and self-harm; higher levels of autistic traits among transgender people may be due to chronic stress manifesting as autistic traits (Nobili et al., 2018).  Autistic gender diverse individuals are especially likely to struggle with finding and receiving appropriate health care, navigating relationships, and assess safety concerns while also trying to create affirming community due to stigma and negative experiences experienced causing hesitancy to self-advocate (Maroney & Horne, 2022).        

Problem Statement

The problem being investigated is the lack of cultural competence among mental health care providers for queer autistic people causing missed or misdiagnosis and results in inappropriate treatment causing harm to gender diverse autistic people (Hall et al., 2020).  The DSM-V defines autism strictly as the absence of neurotypicality instead of neutral statements of what is autism (Maroney & Horne, 2022).  Health disparities exist for autistic individuals who are also LGBTQ+ (Hall et al., 2020).  Misunderstanding populations or misattributing traits to them they do not identify with can cause populations harm, with decreased mental and physical health outcomes, and yet, few voices of autistic people are involved in research to help explain these concerns (Strang et al., 2019).  It is important accurate and recent research is used to determine best practices, including voices from autistic gender diverse people themselves to explain the issues as they see them, to prevent assumptions of causality based on neurotypical perspectives contributing to the existing mental health disparities (Maroney & Horne, 2022).

Purpose of the Study

The purpose of this systematic literature review is to provide a cohesive body of knowledge summarizing recent research on transgender/non-binary and autistic treatment, correlations, and issues.  This literature review includes analysis of recent research to identify how transgender and non-binary autistic people perceive gender and sexuality, how they see gender and sexuality relating to autistic traits they have, and treatment recommendations and best practices.  This review includes summaries of research in a comprehensive, culturally sensitive, and inclusive manner.  Research studies will be examined from ProQuest, EBSCOHost, Google Scholar, and PsychiatryToday databases, along with some excerpts from books and grey articles.

Research Questions

RQ1. What does research data demonstrate as to the relationship between autistic adults (especially those AFAB) and non-binary and transgender identities?
 
RQ2. How do autistic adults’ sex, gender, and gender identity differences develop?

RQ3. What mental health treatment methods and practices are recommended to best serve the transgender and non-binary autistic population?

Theoretical Framework
​
Autism and gender identity will be analyzed through the theoretical lenses of queer theory and crip theory.  These theories help frame the problem of autistic transgender people being ill-treated due to ignorance, bias, or lack of understanding in the research on autistic transgender people (Creswell, 2018).  Queer theory is founded in questioning the norms of gender and sexuality enforced by society (Carroll & Gilroy, 2001).  This is especially pertinent for queer autistic people as they may not intuit the roles others expect them to take and may have less ability to identify barriers due to sexuality or gender identity and how to address them due to their autistic nature.  For many, sex, gender, and sexuality are performative acts based on the internalization of societal expectations and the individual’s situation and sexual orientation and gender identity change over time and are not pre-determined (Verma et al., 2023). 

Queer theory resists normalizing and privileging certain identities over others and encourages society to resist policing other people’s expressions outside of the commonly accepted binary identities (Verma et al., 2023).  People do not all fit conveniently into the gender binaries presented (male/female) and queer theory helps to break down some of the heteronormative structures and pressure to conform, question assumptions about gender and sexuality, focus on the systems of power that divide, and support people who identify as transgender or non-binary (Carroll & Gilroy, 2001).  According to Jones (2021), transgender people are often given more privilege and power in society if they perform a cisgender role, but this may feel inauthentic to their true self and prevent them having genuine relationships for fear of being “found out”.  Conversely, adopting a queer identity as a transgender person risks danger and abuse in the world; attaining a state of good mental health may be very difficult for some without the rejection of the binary and safe living situations (Jones, 2021).  Queer theory posits by not adhering to gender binaries, queer and transgender people disrupt systems of power contributing to others living artificially or stigmatizing roles due to fear and allowing others to question their assumptions on gender and sexuality (Jones, 2021).  Queer theory has been a political rallying cry to encourage individuals to think outside the hegemonic boxes society has construed as the only options and has encouraged people to create new ways of being that do not involve being stuck inside of binary socially prescribed attitudes and beliefs (Burns, 2021).  It is important when individuals realize the roles they have internalized to perform become restrictive or harmful, they develop a cultural flexibility allowing them to leave paradigms not serving them behind to forge a better future for themselves (Kokkos, 2022).  Queer theory emphasizes the importance of critically evaluating schemas purported to be “normal” (such as gender roles) to identify harmful elements perpetuated in order to keep certain populations in power and others minoritized (Kokkos, 2022). 

Similarly, crip theory, created by Robert McRuer in the early 2000s, was made to deconstruct ideas about disability and being disabled and focuses on how reality can be re-shaped and re-imagined to allow for other ways of being to exist in the world and avoids use of the word “normal” in favor of modalities allowing individuals to, not just survive, but flourish, while existing outside of assimilation and typicality (Kafer, 2009).  Crip theory rejects ableism (compulsory able-mindedness and able-bodiedness); ableism states bodies and minds more typical are therefore more valuable, and bodies and minds veering further from “normal” are therefore less deserving of space in the world; but disability is a naturally occurring variation in humans and all people are normal – although all people are not typical (Abrams & Abes, 2021).  For people who are disabled and queer, assimilationist ideologies will never work to build authentic paradigms of power and privilege, because the individual will always be fundamentally different from what is expected as typical. Essentially, crip theory argues while queer disabled people are constantly being displaced by society, the brightest possibilities come about in the refusal of displacement (Kafer, 2009).

Just as the word queer encompasses a variety of identities under the LGBTQ+ umbrella, the word disability also encompasses spectrums of differences and society has seemingly deemed both groups inferior to the able-bodied, neurotypical, cisgender, heterosexual person, which causes people in marginalized identities challenges (Kafer, 2009).  Autism is associated with higher rates of transgender identities and these two intersecting marginalized identities produce stigma to the individuals who live in this intersection and part of this marginalization is brought on by a biased and stigmatizing view of mental and physical health care providers who do not well understand the needs of this population (Hall et al., 2020). This is perpetuated in part by neglecting to include the voices of transgender autistic people in research and causality is often assumed about this population by neurotypical cisgender researchers who themselves may not understand this population (Strang et. al., 2019).  This literature review includes an exploration of the correlation between autism and gender non-conformity utilizing queer theory and crip theory as frameworks for alternate ways people may exist and be empowered in the world and to guide the line of inquiry away from reinforcing societal norms to attempt an honest exploration of the issues at hand (Creswell, 2018).

Definitions and Key Terms

Assigned Female at Birth (AFAB)
Transgender people who were assigned female at birth (AFAB) are often referred to as AFAB to denote which gender they were assigned before or irrespective of transition, a transgender man was typically AFAB (Nobili et al., 2018).

Assigned Male at Birth (AMAB)
Transgender people who were assigned male at birth (AMAB) are often referred to as AMAB to denote which gender they were assigned before or irrespective of transition, a transgender woman was typically AMAB (Nobili et al., 2018).

Autism or Autistic
Autism is a fundamental difference in the way people interact and communicate that includes differences in thinking, socialization, sensory processing, and communication and at times, autism is referenced to under the umbrella term of neurodiversity, which includes other neuro-minorities (Maroney, Horne, 2022).  Throughout this paper, both “individual with autism” and “autistic individual” are used interchangeably.  As a note, the autism community generally prefers identity-first language (autistic person) while the disability rights community as a whole generally prefers person-first language (person with autism) (Carroll, 2019). 

Cisgender
Cisgender described people whose gender identity matched what they were assigned at birth, for example a cisgender woman was assigned female at birth and identifies as female as an adult (Nobili et al., 2018).

Intersex
To be intersex means an individual has had a natural diverse sexual development outside of the typical male/female binary in physical sex characteristics, hormones, or chromosomes (Roen, 2019).

Queer
Queer is an umbrella term including nonnormative sexualities such as gay, bisexual, and pansexual as well as nonnormative gender identities such as transgender, non-binary, and gender fluid, among many others; queer is a way to identify many minoritized groups under one identity (Burns, 2021).

Non-Binary / Transgender / Gender Diverse / Gender Non-Conforming
Transgender is used as an umbrella term in this paper and is used to describe anyone who do not identify 100% with the gender assigned to them at birth, including transgender binary identities (transgender men and transgender women), transgender non-binary identities such as (non-binary, agender), gender diverse identities (such as third gender, gender fluid, bi-gender), and gender non-conforming individuals (Strang et al., 2019).

REFERENCES
​
Abrams, E. J., & Abes, E. S. (2021). "It's Finding Peace in My Body": Crip Theory to Understand Authenticity for a Queer, Disabled College Student. Journal of College Student Development, 62(3), 261-275. http://proxy1.calsouthern.edu/login?url=https://www-proquest-com.csu.idm.oclc.org/scholarly-journals/finding-peace-my-body-crip-theory-understand/docview/2547639324/se-2

American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, DSM-5.  American Psychiatric Association Publishing.

Burns, R. (2021). Queerness as/and political attunement: a brief response to Anderson & Knee (2020) Queer Isolation or Queering Isolation? Leisure Sciences, 43(1/2), 125–130. https://doi-org.csu.idm.oclc.org/10.1080/01490400.2021.1874575

Carroll, L., & Gilroy, P. J. (2001). Teaching “Outside the Box”: Incorporating Queer Theory in Counselor Education. Journal of Humanistic Counseling, Education & Development, 40(1), 49–58. https://doi-org.csu.idm.oclc.org/10.1002/j.2164-490X.2001.tb00101.x

Carroll, S. (2019).  Respecting and empowering vulnerable populations: Contemporary terminology.  The Journal for Nurse Practitioners, 15(3), 228-231. https://doi-org.csu.idm.oclc.org/10.1016/j.nurpra.2018.12.031

Creswell, J. W. (2018). Research design: Qualitative, quantitative, and mixed methods approaches. (5th ed.). Sage.

Hall, J. P., Katie, B., Streed,Carl G.,,Jr, Boyd, B. A., & Kurth, N. K. (2020). Health disparities among sexual and gender minorities with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(8), 3071-3077. https://doi-org.csu.idm.oclc.org/10.1007/s10803-020-04399-2

Jones, D. B. (2021). De-colonizing my trans body: Fanon and the masks I have worn. Existential Analysis: Journal of the Society for Existential Analysis, 32(2), 322–332.

Kafer, A. (2009). What's Crip About Queer Theory Now?: Crip Theory: Cultural Signs of Queerness and Disability. By Robert McRuer, New York, New York University Press, 2006. 283 pp. $22.00 (paperback). ISBN-10: 0814757138. Sex Roles, 60(3-4), 291-294. https://doi-org.csu.idm.oclc.org/10.1007/s11199-008-9511-6

Kokkos, A. (2022). Transformation theory as a framework for understanding transformative learning.  Adult Education – Critical Issues (2)2, 20-33. Retrieved from https://www.researchgate.net/publication/366826194_Transformation_Theory_as_a_Framework_for_Understanding_Transformative_Learning on May 31st 2023.

Kung, K. T. F. (2020). Autistic traits, systematizing, empathizing, and theory of mind in transgender and non-binary adults. Molecular Autism, 11, 1-8. https://doi-org.csu.idm.oclc.org/10.1186/s13229-020-00378-7

Maroney, M. R., & Horne, S. G. (2022). “Tuned into a different channel”: Autistic transgender adults’ experiences of intersectional stigma. Journal of Counseling Psychology, 69(6), 761–774. https://doi-org.csu.idm.oclc.org/10.1037/cou0000639.supp (Supplemental)

​MasterClass. (2022). Queer Theory: Definition, history, and impact. Retrieved from https://www.masterclass.com/articles/queer-theory on May 31st, 2023.

Nobili, A., Glazebrook, C., Bouman, W. P., Glidden, D., Baron-Cohen, S., Allison, C., Smith, P., & Arcelus, J. (2018). Autistic Traits in Treatment-Seeking Transgender Adults. Journal of Autism & Developmental Disorders, 48(12), 3984–3994. https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3557-2

Pecora, L. A., Hancock, G. I., Hooley, M., Demmer, D. H., Attwood, T., Mesibov, G. B., & Stokes, M. A. (2020). Gender identity, sexual orientation and adverse sexual experiences in autistic females. Molecular Autism, 11, 1-16. https://doi-org.csu.idm.oclc.org/10.1186/s13229-020-00363-0

Roen, K. (2019). Intersex or Diverse Sex Development: Critical Review of Psychosocial Health Care Research and Indications for Practice. Journal of Sex Research, 56(4/5), 511–528. https://doi-org.csu.idm.oclc.org/10.1080/00224499.2019.1578331

Strang, J. F., Klomp, S. E., Caplan, R., Griffin, A. D., Anthony, L. G., Harris, M. C., Graham, E. K., Knauss, M., & van der Miesen, A. I. R. (2019). Community-based participatory design for research that impacts the lives of transgender and/or gender-diverse autistic and/or neurodiverse people. Clinical Practice in Pediatric Psychology, 7(4), 396–404. https://doi-org.csu.idm.oclc.org/10.1037/cpp0000310

Strang, J. F., Powers, M. D., Knauss, M., Sibarium, E., Leibowitz, S. F., Kenworthy, L., Sadikova, E., Wyss, S., Willing, L., Caplan, R., Pervez, N., Nowak, J., Gohari, D., Gomez-Lobo, V., Call, D., & Anthony, L. G. (2018). “They Thought It Was an Obsession”: Trajectories and Perspectives of Autistic Transgender and Gender-Diverse Adolescents. Journal of Autism & Developmental Disorders, 48(12), 4039–4055. https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3723-6

Verma, T., Chapman-Orr, E., Davis, A. What is queer theory? Grinnell College: Subcultures and Society.  Retrieved from https://haenfler.sites.grinnell.edu/subcultural-theory-and-theorists/queer-theory/ on May 31st, 2023.

Walsh, R. J., Krabbendam, L., Dewinter, J., & Begeer, S. (2018). Brief report: gender identity differences in autistic adults: associations with perceptual and socio-cognitive profiles. Journal of Autism & Developmental Disorders, 48(12), 4070–4078. https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3702-y

Zener, D. (2019). Journey to diagnosis for women with autism. Advances in Autism, 5(1), 2-13. https://doi-org.csu.idm.oclc.org/10.1108/AIA-10-2018-0041

Considerations in Autism Support Consultation

This paper addresses issues of consultation in autism advocacy efforts.  Included topics are challenges, strategies for support, and legal and ethics issues around neurodiversity.  I have been giving workshops for faculty and staff on how to better support autistic college students as as an autistic counselor myself.  As a note, autistic person and person with autism are used interchangeably throughout this paper.  While person-first language (person with autism) is preferred in much of the disability community, among the autism rights community, identity-first language (autistic person), is often preferred because autism is a core part of our neurology and defines who and how we are.

Background

Autism is a neurological difference that sets autistic people apart from the neurotypical population.  By common estimates, autism effects about 1 in 50 individuals (some estimates say 2.2% of the adult population!) and is characterized by social-emotional challenges in communication with neurotypical people, special interests, and rigidity of routines or habits that significantly affect their ability to function well in work, school, or their personal lives (National Institute of Mental Health, 2022).  Autistic adults face a decreased life expectancy, higher suicide risk, higher rates of comorbid conditions and mental health challenges, higher unemployment, and more financial hardship (Djela, 2021).  Autism is underdiagnosed in women and girls, those with less support needs, and adults due to differences in presentation and diagnostic criteria geared towards young boys (Murphy, Broyd, 2020).  Most autistic people are adults who do not have an intellectual disability and most autistic adults are unlikely to be diagnosed.  In one study, every participant who identified as non-binary was also autistic, implying a possible gender flexibility within autism.  Both individuals who are self-diagnosed and those who have clinical diagnosis experience similar barriers and challenges with no significant differences, implying that individuals who self-identify as autistic should be treated as such (Doherty, Neilson, O'Sullivan, Carravallah, Johnson, Cullen, Shaw, 2022).

Quality of Life Challenges

It is an unfortunate fact that autistic individuals tend to have a much lower quality of life than the typical population.  One major factor in this is a lack of inclusion in society, even more so than individuals with a physical disability.  This lack of inclusion is often perceived to be cause by others not understanding autistic people and misappropriating behaviors to meanings that are untrue.  Many autistic people feel as though they are not respected by society and the lack of understanding around autism contributes to their exclusion and perceived discrimination.  Autistic people often face increased social stressors and lack of both formal and informal support, which can lead to the increased mental health challenges experienced by autistic people.  Many autists struggle with sensory overload, a situation where the person gets overstimulated by sensory input and has a decrease in functional ability as a result.  Autists often experience barriers to accessing services because they have not been designed to accommodate to sensory needs.  (McConachie, Mason, Parr, Garland, Wilson, Rodgers, 2018).   Autistic people have a 16-30 year lower life expectancy and tend to experience barriers to health care access that contribute to lower physical and mental health when compared to the neurotypical population.  The biggest barriers for autistic people to access health care were trying to decide if their symptoms were severe enough to deserve care (72%), aversion to using the phone to make appointments (62%), feeling like the offices they contacted did not understand them (56%), and having the waiting room be an uncomfortable experience (51%) (Doherty, Neilson, O'Sullivan, … 2022).

Autistic adults face underemployment or unemployment at much higher rates than the general population and other disabled populations.  In the UK, only 16% of autistic adults are employed full-time, 32% are employed in some manner, and 77% of autistic adults are unemployed, with a majority of those desiring meaningful employment and unable to attain it.  Having meaningful employment is a key metric to qualify of life and fosters the feeling of belonging, social support, and inclusion.  Disabled people in general are paid 11% less for men and 22% less for women and are twice less likely to be in management roles.  70% of autistic adults report being bullied by someone they considered a friend, making workplace interactions more stressful.  Neurotypical people show evidence of subconscious bias when evaluating autistics, and that bias worsens when they know of their autism diagnosis (Djela, 2021). 

General Considerations

Autistic individuals benefit from having support people who understand their common challenges.  Some strategies that can help when working with autistic people is to be direct, speak clearly, and avoid open-ended questions that could lead to confusion as to what response is expected.  Autistic people often take longer to process oral language, may miss non-verbal communication cues, may be offput by people who speak very loudly, wear strong scents, or touch others in communication.  If people can be patient, decrease their perfume or cologne, not touch others without asking if this is acceptable, and speak at a clear but not too loud voice, this can help an autistic person immensely.  Autists can be very literal, so avoiding sarcasm, irony, or figures of speech can help make communication clear and effective.  Many autistic people find no use for small talk and may not respond to conversational inquiries along those lines.  Autists may also demonstrate a lack of non-verbal communication and can sometimes be described as having a flat affect, but this does not mean they are unengaged.  Often when experiencing strong emotional response, an autistic person’s face may be completely blank.  By the same token, some autistic people find it easier to focus on what is being said if they do not look at the person speaking, so it may appear as though they are not paying attention when they are doing their best to listen.  Due to missing some social cues, autistic people can sometimes be blunt or ask questions that others find inappropriate.  A calm statement can help direct the conversation elsewhere, but it helps to know that this behavior was likely not done from a manipulative or harmful intent (Cooper, Gale, Langley, Broughton, Massey, Hall, Jones, 2022).

Predictability can help an autistic person feel more comfortable and reduce unwanted stress.  Routines can be very helpful and knowing in advance what to expect can reduce anxiety.  By the same token, changes in expectations can be difficult and produce anxiety.  For appointments, it can help to let the autist know if an appointment will be running late and to ask for and provide desired accommodations such as a quiet waiting area, dimmer lights, or waiting outside to prevent overstimulation, stress, and possible shut-down of ability to process information.  If an autistic person does experience a shut-down, guide them to a quiet space in which to recover.  Some autistic people prefer online modalities when compared to face-to-face to avoid crowding and environmental concerns, it helps to offer flexibility in service delivery depending on what the individual might find most helpful. (Cooper, Gale, Langley, … 2022).

It helps when viewing autism accommodations to view autism as a disability in the same way as a physical disability.  Blaring loud music or making autistic people engage in phone conversations to access services is a similar barrier as not having a ramp for a wheelchair user because it creates an environment that autistic people cannot access without significant difficulty.  For autistic people to be supported in our society, we need to be aware of sensory sensitivities, provide alternate methods of receiving services, and be mindful of what purpose things serve.  If background music is preferred at an event, how loud does it really need to be?  Could it be turned down so that people with sensory sensitivities could still attend?  If an office has traditionally relied on phone appointment services, could they liaise with tech support to create an online booking system for students who are aversive to making phone calls?  Simple changes can be made in business practices to make environments more accessible and inclusive (Doherty, Neilson, O'Sullivan, … 2022).

Much of the current “support” for autistic individuals focuses on teaching them to look neurotypical and to mask, often at the expense of their mental health.  Autistic coping mechanisms, often called stims, are often discouraged because they may appear unusual without providing an alternate method of stress reduction, causing autistic individuals to be told to act in certain acceptable ways that are unnatural to the autist, not to act in ways that calm them, and not given any method to reduce the anxiety that often builds as a result.  There is often a catch-22 for autistic adults in disclosing their diagnosis.  On the one hand, they could request appropriate accommodations that could make their ability to function and enjoy life much better.  On the other hand, they may face discrimination from people who do not understand what autism is and have internalized negative perceptions about autistic people.  When an individual does disclose, 35% receive unfavorable discrimination or treatment.  Non-disabled individuals over-estimate their understanding and acceptance of disability, which contributes to negative treatment and invalidation of the autistic person’s needs.  Many autistic individuals mask in an attempt to appear more typical, but this ability to mask is impacted by stress and negative conditions and masking takes a toll on autistic people’s mental health (Djela, 2021).

Minor accommodations can be made that fit into a universal design framework benefiting all individuals.  For example, if our workplaces and schools can be not just aware of but accepting of different ways people present themselves and remove the self-perceived need for autistic individuals to mask, that would remove a large degree of stressors on autistic people to present as neurotypical while also welcoming people of different cultures to style their hair and wear clothes that they feel most comfortable in.  The pressure to conform harms many people from different religions, LGBTQIA2+ identities, and racial backgrounds, not just autistic people.  Specific inclusion of neurodiversity and autism into “diversity” trainings along with teaching about autism without a fear-based mentality can help advance inclusive practices (Djela, 2021).

It is often difficult to recognize undiagnosed individuals because they commonly mask their autistic traits after being rejected or disapproved of, often smiling, making consistent eye contact, and being exceedingly careful or apologetic.  Most autistic people mask, sometimes called camouflaging, to some degree unconsciously to conform to expectations, but this masking takes great effort and is exhausting.  Some factors in recognizing autism in an undiagnosed individual are recognizing co-occurring conditions of ADHD, anxiety, depression, migraine, eating disorder, PTSD, sleep apnea, gastrointestinal disorders, epilepsy, hypermobility, fibromyalgia, OCD, and autonomic dysfunction as factors that may signal autism as well.  These individuals can often recall experiences from their youth where they felt ostracized, bullied, or like they did not fit in.  Many autistic people experience challenges with executive functioning to manage daily life tasks and may be perpetually late and apologetic or rigidly early to minimize anxiety about being on time.  Individuals may be more direct than others find appropriate and may take more time to process information and need more questions answered before they feel confident moving forward with directions.  Autistic people are much more likely to identify as LGBTQIA2+ when compared to the general population, perhaps due to a lack of internalized gender roles and expectations.  It is often the case that autistic people do not experience communication barriers with other autistic people and may find communication with these people easy and intuitive, while communication with neurotypical populations are draining and overwhelming, and autistic adults may turn to drugs or alcohol to cope with this stress.  Other signals may be hyper-sensitivity to sensory stimuli such as lighting, sounds, scents, and clothing, family members with an autism or ADHD diagnosis, and pervasive fatigue, especially following social engagements.  It is important to address an autism suspicion with the individual in a sensitive and accepting manner.  For people interested in exploring more, they may take the Autism Spectrum Quotient, a 50 question online screening tool that will identify autistic traits and note if they are likely to be autistic and benefit from further analysis.  One thing many autists find helpful is in connecting with the autistic community for support and acceptance from other autistic individuals (Bradshaw, Pickett, van Driel, Brooker, Urbanowicz, 2021).

There is a correlation both in non-binary and transgender individuals having higher autistic traits and in autistic individuals being more likely to identify and gender nonconforming.  Researchers have theorized that this is due to autistic people not internalizing gender role norms, having more biological traits of the opposite sex assigned at birth, or autistic traits and sensitivities causing individuals to present in gender atypical manners, for example, boys wearing skits to avoid an uncomfortable sensation that wearing pants may cause.  Individuals who are members of multiple marginalized identities often have increased anxiety, stress, and depression compared to those who are either autistic or transgender.  The most elevated identity for autistic individuals was in identifying as non-binary.  This is theorized to be due to an autistic resistance to social conditioning, less concern for social norms, and a rejection of the binary gender dynamic (the idea that there are only two genders that are fixed at birth as determined by external genitalia).  Those autistics assigned female at birth were the most likely to identify as non-binary, which may also lend weight to cultural misogyny influencing those assigned female at birth to not want to exist as representatives of a subgroup most discriminated (Walsh, Krabbendam, Dewinter, Begeer, 2018).

Education Challenges

Autistic individual fare worse than other individuals with disabilities in post-secondary education outcomes, are less likely to live independently, were more likely to live with parents, and had the lowest percentage of friendships of all disability groups.  For those autistic adults who were living independently, there were issues of intersectionality and privilege that played into their independence as they tended to be White, need a lower level of support, and be from higher income backgrounds.  Students exiting high school in the United States are supposed to have transition planning provided to them through their school systems, but one-third of autistic students do not get a transition plan, and of those that do, only 25% of parents thought the transition plan actually helped their child.  Compound this with the fact that parents of autistic children had less expectations for their children for post-secondary education when compared to parents of children with other disabilities.  There is an unfortunate lack of evidence-based practices to support autistic students exiting high school (only 2% of autism research focuses on adult issues), leading to improvised plans that may or may not benefit the student (Ruble, McGrew, Toland, Dalrymple, Adams, Snell-Rood, 2018).

Transition planning for autistic individuals exiting high school and entering adulthood can be improved dramatically by implementing evidence-based practices and creating individualized plans for each student depending on their abilities and functional limitations.  Autistic adults can live meaningful and productive lives at whatever level of function they have available to them, with families and support professionals enabling access to this quality of life be removing barriers to education, employment, medical care, and inclusion in society.  Because each individual with autism may have varying and disparate needs, it is crucially important that transition planning for autistic adults is individualized to their specific needs and strengths.  Emerging autistic adults may need extra support to learn how to drive or use public transportation for individuals with disabilities, attend college using accommodations, acquire Medicaid, and get approved for Social Security Disability Income, but these are all things that once done, can improve quality of life substantially.  Autistic people should be involved in creation of their goals to ensure that goals are meaningful for them to attain personally.  Autistic individuals are less likely to be motivated to meet a goal that is not a personal draw for them.  While it may be more challenging to provide appropriate supports for autistic individuals, by working with the autistic person and their families, these plans can be created to enable autistic individuals to improve their quality of life (Ruble, McGrew, Toland, … 2018).

Mental and Physical Health Challenges

One area that could be immediately beneficial to autistic adults is for mental and physical health care providers and other support professionals be better trained at recognizing signs of autism.  There is a stereotypical version of autistic adults perpetrated by movies like Rain Man that give people a biased understandings of autism that presents in a one-dimensional formula not representative of a majority of autistic adults.  This misunderstanding has caused many autistic adults to miss a diagnosis, be misdiagnosed, and suffer increasingly negative mental health outcomes the longer they go undiagnosed.  Those who most often miss an autism diagnosis are women, people of color, those with high intelligence and lower support needs, and are often missed due to an ability to mask.  Whether diagnosed or not, most autistic people struggle with employment, education, relationships, finances, and physical and mental health that can be improved with accommodations and understanding of autism.  By recognizing autism in atypical presentations, support providers may be able to provide appropriate support and guide autistic adults to address the specific challenges and barriers they face with greater insight (Bradshaw, Pickett, van Driel, Brooker, Urbanowicz, 2021).

Challenges in the Prison System

One area where evidence misunderstandings of autism cause harm towards autistic individuals is in the criminal justice system.  While autistic individuals are shown to commit crimes at a comparable or lower rate to the general population, autistic individuals are overrepresented in the prison system.  This may be due to several factors.  First, autistic people are more likely to get caught, admit guilt, and plead guilty for crimes they commit, and are often less able to advocate for themselves in court.  Second, it’s possible that autistic people who do engage in criminalized activity engage in activity with more serious consequences, possibly due to increased mental health comorbidity.  Last, it may often be the case that autistic people are sentenced more harshly due to bias in the courts, and once incarcerated, a lack of autism-sensitive care while interned may extend time in the system due to infractions committed by the autistic person while imprisoned (Chester, Bunning, Tromans, Regi, Langdon, 2022).

To address inequities in the prison system, it will be beneficial to identify people with autism and, provide diagnosis services.  Autistic people in prison are much more likely to experience bullying and exploitation.  Fear of social interaction may lead to a higher level of social isolation and autists are more likely to be placed in isolation as punishment for outbursts, disobedience, or rude behavior resulting from stressors they experience.  Unpredictable changes in prison routine may cause stress.  Screening for autism and training for prison staff will benefit autistic individuals to have a more holistic and person-centered support system.  For proper care to be administered, it would be helpful for collaboration and consultation between prison staff and mental health experts to develop systems to identify incarcerated individuals who may be autistic, assess them, and provide appropriate supports to incarcerated individuals with autism (Newman, Cashin, Graham, 2019).

Training Recommendations

Voluntary and inclusive training on autism is beneficial.  Training aimed at increasing empathetic understanding can support individuals to understand the challenges faced by autistic people and support improved interpersonal communication.  When people understand why a behavior is occurring, they are often able to be more patient and offer more functional support.  People often have incomplete understanding of autism or misunderstandings about autistic behavior and why individuals experience the challenges in the way they do.  Understanding that autism is an integral part of who the person is that cannot be “cured” can help people re-frame how they approach communication with and support for autistic people.  Another aspect of training that people tend to find beneficial are case studies or examples that can humanize how autism may present in a person (Murphy, Broyd, 2020).

One of the best ways in which to influence individual mindsets to reduce bias is personal contact.  While this is difficult to do so, this is one of the main reasons that I have started speaking openly about my experiences as an autistic person.  People can intellectually understand data and evidence promoting more inclusion of individuals with a disability, but it’s understanding an individual person that can truly shift the foundational core of a person’s bias.  Highlighting autistic strengths can be a useful strategy to increase inclusion.  For example, autistic people tend to be honest to a fault, hardworking, reliable, write articulately, provide humor, camaraderie, and support, and be methodological in task completion.  While in-person networking is not a strength, autistic people tend to excel in electronic media channels and online networking.  Autistic people often approach problems with outside-the-box thinking and are innovative and creative problem-solvers while seeing the big picture, systems-level analysis in ways others do not.  If autistic individuals are employed in areas relating to their special interest, they may work with a rare devotion in their field (Djela, 2021). 

Conclusions

There is often a gap of information and interest between researchers on autism and the needs and interests of families and individuals with autism.  This gap leads to information being presented by the research community that may not be of merit to the autistic community.  In addition to this, many autistic people experience stigma from society and they and their families often experience frustration with a lack of effective supports that directly improve well-being, adaptive skills, and resiliency for autistic individuals (Gauld, Maquet, Micoulaud-Franchi, Dumas, 2022).  It is my goal as a consultant to try to bridge the gap between community needs and researchers to bring research-based strategies and supports that are functionally useful for autistic individuals and their families.

References

Bradshaw, P., Pickett, C., van Driel, M.,L., Brooker, K., & Urbanowicz, A. (2021). Recognising, supporting and understanding autistic adults in general practice settings. Australian Journal of General Practice, 50(3), 126-130. Retrieved from http://proxy1.calsouthern.edu/login?url=https://www-proquest-com.csu.idm.oclc.org/scholarly-journals/recognising-supporting-understanding-autistic/docview/2515193430/se-2

Chester, V., Ms, Bunning, K., Dr, Tromans, S., Dr, Regi, A. P., & Langdon, P., Professor. (2022). The prevalence of autism in the criminal justice system: A systematic review. BJPsych Open, 8, S45-S46. doi:https://doi-org.csu.idm.oclc.org/10.1192/bjo.2022.179

Cooper, M., Gale, K., Langley, K., Broughton, T., Massey, T. H., Hall, N. J., & Jones, C. R. G. (2022). Neurological consultation with an autistic patient. Practical Neurology, 22(2), 120-125. doi:https://doi-org.csu.idm.oclc.org/10.1136/practneurol-2020-002856

Djela, M. (2021). Change of autism narrative is required to improve employment of autistic people. Advances in Autism, 7(1), 86-100. doi:https://doi-org.csu.idm.oclc.org/10.1108/AIA-11-2019-0041

Doherty, M., Neilson, S., O'Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. BMJ Open, 12(2) doi:https://doi-org.csu.idm.oclc.org/10.1136/bmjopen-2021-056904

Gauld, C., Maquet, J., Jean-Arthur Micoulaud-Franchi, & Dumas, G. (2022). Popular and scientific discourse on autism: Representational cross-cultural analysis of epistemic communities to inform policy and practice. Journal of Medical Internet Research, doi:https://doi-org.csu.idm.oclc.org/10.2196/32912

McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48(5), 1596-1611. doi:https://doi-org.csu.idm.oclc.org/10.1007/s10803-017-3402-z

Murphy, D., & Broyd, J. G. (2020). Evaluation of autism awareness training provided to staff working in a high secure psychiatric care hospital. [Evaluation of autism awareness training] Advances in Autism, 6(1), 35-47. doi:https://doi-org.csu.idm.oclc.org/10.1108/AIA-06-2019-0017

National Institute of Mental Health (2022). Autism Spectrum Disorder. Retrieved on 11/16/2022 from https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

Newman, C., Cashin, A., & Graham, I. (2019). Identification of service development needs for incarcerated adults with autism spectrum disorders in an australian prison system. [Identification of service development needs] International Journal of Prisoner Health, 15(1), 24-36. doi:https://doi-org.csu.idm.oclc.org/10.1108/IJPH-11-2017-0051

Ruble, L. A., McGrew, J. H., Toland, M., Dalrymple, N., Adams, M., & Snell-Rood, C. (2018). Randomized control trial of COMPASS for improving transition outcomes of students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(10), 3586-3595. doi:https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3623-9

Walsh, R. J., Krabbendam, L., Dewinter, J., & Begeer, S. (2018). Brief report: Gender identity differences in autistic adults: Associations with perceptual and socio-cognitive profiles. Journal of Autism and Developmental Disorders, 48(12), 4070-4078. doi:https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3702-y

Who Are We Anyhow?
By Lisa Macafee
​​
​I was talking with a co-worker who had a new grandbaby.  She was wondering what color their eyes would be, if they changed from the blue they were currently.  I bemoaned that neither of my kids got my blue eyes, at which point she looked at me and said “you have blue eyes?!” clearly inferring she did not think I had blue eyes.
 
I have thought of myself as having blue eyes all my life.  Now I’ve spent a good amount of time staring in the mirror, taking pictures of, and trying to decide what color my eyes are, because clearly, they’re not blue.  A person said so.
 
I have been thinking a lot about identities.  What makes us who we are and how we conceive of who we believe ourselves to be.  I was a blue-eyed person all my life, and now I don’t know what I am!
 
All this kerfuffle about eye color made me reflect on how much my self-concept changed when I got an autism diagnosis. 
 
It felt as though for years, I was treading water, begging the world to allow me to exist just a little longer.  Maybe if I prove myself useful to someone in need, that could justify the resources needed to continue existing.  I felt the constant need to prove myself worthy of life because I had internalized a deep sense of worthlessness from being different, without knowing why I was different.
 
I got my autism diagnosis at 37 and it was like a new lease on my identity. 
 
I believe now that I’m not worthless.  But I’m still not valid in the neurotypical world.  I am neurologically different from 98.2% of the world and will never be the same as these folks.  I am rarely accepted by these folks.  I will never fit in.  I will never be their version of “valid”.
 
Getting an autism diagnosis allowed me to understand how and why I’m different.  It allowed me to have words for the things I feel and accommodate the challenges I face.  But mostly, it allowed me to see myself as a different kind of valid and allow me to be myself.
 
Different is not bad, but we are taught that we should not be different.  We should learn to fit in.  We should learn to adapt. 
 
I spent much of my professional life trying desperately to fit into a set of rules I never understood.  You know what that got me?  People took advantage of me.  People wrote me off because I was trying too hard.  People assumed I was stupid because I was nice.  People thought I was “off”, but couldn’t place why, so tried to get me fired.
 
I think, in retrospect, that I’m more accepted by the status quo now that I’ve given up on trying to fit in and am flamboyantly myself.  I have hot pink hair in an asymmetrical bob.  I wear my combat boots to work every day.  And neurotypical folks see that and seem to think “oh, there’s Lisa, repping for queer neurodivergent folk, cool” instead of “oh, there’s Lisa, there’s something weird about them that I can’t quite place…”
 
Since I cannot adapt my neurology, I have decided that my version of valid is to dedicate my life to service, but not to justify my worth anymore, it’s to give me a purposeful life that feels rewarding and good to me.  Not for them.
 
I don’t know if I have blue eyes or not, but I do know I’m autistic, and that gives me a sense of freedom I never had by having blue eyes.

This paper discusses the unique challenges that individuals on the autism spectrum face with substance abuse disorders.  To honor autism advocacy groups, individuals with autism will be referred to mostly using identity-first language of “autistic” as opposed to person first language of “a person with autism” and for this paper, autistic includes all diagnosis that were previously under the autism spectrum disorder umbrella in the DSM-IV.  While many disabilities are separate from the core of an individual, autism is a difference in neurology, so many autistic people experience autism as part of what shapes their core.  I am a 40-year-old autistic person who received my diagnosis at age 37 after being in and out of therapy for autism-related symptoms and traumas and struggled with substance use when I was younger.  I wanted to explore the variety of reasons autistic individuals turn to substance use and what therapies and treatments are most effective for this population.

Autism and substance Abuse
Autism is a developmental disorder that includes deficits in social reciprocity, social communication, and restricted, uncompromising, or rigid interests and activities (Helverschou, Brunvold, Arnevik, 2019).  Autism in adults is a field with underdeveloped research because only recently have adults been diagnosed with autism, and clinical diagnosis are still more commonly understood to be diagnosed as children, and with a bias towards male children.  High functioning autistic people often go undiagnosed in childhood, and without treatment in adulthood, may find other ways to manage their symptoms such as substance abuse.  44% of autistic clients took more than two years in psychiatric care to receive an autism diagnosis, and it is estimated that many adult autistics are undiagnosed and underserved, leading to increased co-morbid disorders that could have been preventable (Nylander, et al., 2013).  

Diagnosis of autism is on the rise in the last 20 years.  Many attribute the increase in diagnosis to broadened diagnostic criteria and increased awareness about atypical and high-functioning autism presentation.  While no one knows the cause of autism, certain factors can lead to higher prevalence.  One such factor is opioid use of the mother during pregnancy (Feder, 2020).  Other contributing factors include heavy drinking, smoking cigarettes, or being exposed to neurotoxic chemical pollutants such as lead and mercury during pregnancy.  Autism is also highly hereditary, leading some to ask if autism is caused by substance use of the parent, or if the parent use substances because of their (un)diagnosed autism, and the autism is simply genetic?  It seems that autism is about 20% - 30% genetically predictable and environmental factors affect the neuropsychiatric development of an individual with genetic susceptibility for autism (Xi, Wu, 2021).

Approximately 0.6% of the global population struggles with substance use disorder (SUD), and individuals with conditions such as personality or affective disorders, anxiety, schizophrenia, bi-polar disorder, PTSD, and attention deficit hyperactivity disorder (ADHD) are affected by SUD more than others (Helverschou, Brunvold, Arnevik, 2019).  Lifetime rates for substance-use disorder (SUD) globally range from between 10% to 20% (Kronenberg, et al., 2015).  Autistic individuals struggle with substance abuse at close to a doubled rate than their neurotypical peers with 19-30% of autistic clients in clinical settings also struggling with substance abuse.  While many autistic adults have negative attitudes towards psychoactive substances, possibly due to most being illegal, interestingly, the more autistic traits a person exhibits, the higher their risk of substance-use disorder.  It is also true that 1st degree relatives of an autistic person have a higher risk of substance-use disorder.  This suggests that there may be genetic, shared environmental, or epigenetic factors surrounding autism that lend towards substance use (Butwicka, et al., 2017). 

Between 1% - 2% of the population is autistic and autistic individuals are at risk for many secondary problems, including substance abuse.  Autistic people are up to seven times more likely to come into contact with the criminal justice system than their neurotypical peers, and the autism community has generally responded with dissatisfaction or even been traumatized from their treatment by police.  Police may in part respond to autistic individuals negatively because some autistic traits can be confused for signs of substance use or aggression including avoiding eye contact, egocentricity, social communication impairments, and dependence on routines.  Police can easily perceive a struggle to verbally respond appropriately under stress as deliberately ignoring or refusing to comply.  This difficulty in responding appropriately to the police is of course exacerbated by substance use of an autistic person.  Autistic people tend to respond most positively when approached quietly, calmly, in a non-threatening manner (Mogavero, 2018).  

There are many reasons that substance use may appeal to autistic people.  At the top of the list are decreased social anxiety and increased (self-perceived) social functioning and reducing overall tension (Butwicka, et al., 2017).  I will say that for myself, I turned to substance use because it was the only time I felt part of a social group.  If everyone was intoxicated, they were all unable to make correct social interactions and my inability to predict subtle social cues was mitigated by no one expecting complex social interactions when high or drunk.  It seemed to me that when other people were high or drunk seemed to be the time I had the easiest access to meaningful conversations and social interactions.  When sober, I found it difficult to engage with people and became much more reserved.  It took years of therapy for me to be able to comfortably interact with individuals socially sober, and even now, in new situations or with people I don’t know, I find it challenging.  Overall, individuals with autism report dissatisfaction with parts of their life that substance abuse can diminish or dull temporarily and those autistic individuals with SUD often receive ineffective care and treatment (Kronenberg, et al., 2015).

While autistic individuals who are less socially proficient may be protected from peer influences of drugs or alcohol, autistic people who are socially outgoing and with higher intelligence have higher risk of substance use disorder.  Screening for SUD during autism assessments is not standard procedure and it is likely that many high-functioning autistic people are missed for SUD upon assessment because they do not feel substance abuse pertinent to bring up when being supported for autism.  Reasons for using substances as stated by 18 college students with ASD ranged from reducing social anxiety and inhibitions to finding peace, calming down, overcoming frustrations, or forgetting problems.  Substance use is problematic when relied on long-term however, because of its effect to reduce already impaired social functioning.  While getting drunk or high may reduce social anxiety temporarily, it also reduces the ability of the autistic person to judge what behaviors are socially acceptable in the setting they are in and they may experience consequences for unintentionally violating unspoken social mores and face increased social isolation or relationships challenges as a result of substance use after the fact (Helverschou, Brunvold, Arnevik, 2019).

Assessment and treatment of primary, secondary, and co-morbid disordersDiagnosing autism and substance use disorder can be challenging because some autistic traits could be products of substance use (Helverschou, Brunvold, Arnevik, 2019).  Also difficult to navigate in substance abuse treatment is that 55% of people seeking SUD treatment also have a co-occurring psychiatric disorder.  Individuals with co-occurring disorders typically have more severe symptoms, higher relapse rates, higher risks of hospitalization and incarceration, serious infections, and unstable housing, which all contribute to greater treatment needs (Kronenberg, et al., 2015).  Additional comorbid conditions complicate the rate of substance-use disorder among autistics as well.  For example, autistic people who also have ADHD are more likely to have substance use disorder, while autistic people with intellectual disability are less likely to turn to substance use (Butwicka, et al., 2017).  Approximately 60% of autistic individuals have co-occurring psychological disorders (Nylander, et al., 2013).  The challenge for mental health providers of individuals with autism who also have SUD is that 87% of adult autistics also have a co-occurring mental illness, and often multiple diagnosis.  Each symptom needs to be addressed for effective care, and this can get overwhelming for the client and the practitioner (Houting, 2019). 

Autism in general is likely underdiagnosed in adults who missed a diagnostic window as a child in k-12 education due to their presentation being milder.  There is also a likelihood that females with autism are underdiagnosed due to diagnostic bias for males and higher masking social difficulties in females with autism.  Autistic adults who are undiagnosed with autism are at a higher risk for mental health disorders, and possibly SUD due to untreated autism.  Adults with autism have high rates of co-occurring disorders including intellectual disability, affective disorders, anxiety, and psychotic disorders, all applicable disorders will need to be taken into account for each individual to receive effective and individualized care (Nylander, et al., 2018). 

Adults who go undiagnosed often face increasing mental health problems as they cannot find the solution to why they cannot fit in, cannot understand what others imply is simple, and cannot navigate complex employment.  Undiagnosed autistics often default to the idea that they are simply bad, and there may be a lot of work to do in therapy to address and reverse these ideas (Stagg and Belcher. (2019).  It may be beneficial to screen for autism for clients with serious mental health disorders such as borderline personality disorder (BPD) as there are an often an overrepresentation of autistic traits present in clients with BPD and treating the autism symptoms separately, such as rigidity, patient-therapist communication issues, emotional understanding, executive function deficits, and difficulties relearning may be helpful for best outcome potential (Kaltenegger, Philips, Wennberg, 2020). 

One assessment tool that is free and available to the public online is the Autism-spectrum Quotient (AQ), which has been demonstrated to be effective in discerning if an individual may have enough autistic traits to warrant further exploration of a diagnosis.  This assessment relies on self-reporting, so is not as reliable as a clinical assessment.  For many in the possibly-autistic-and-exploring-options community, having a free and easy to access assessment to let them know they may be on the right track in even attempting to look into autism can be a lifeline.  The AQ can also be used by practitioners who are less familiar with autism to determine to they should refer to a developmental psychologist or autism specialist for further testing.  That being said, caution should be used when using assessments like these because many traits highlighted as autistic in the AQ could also be traits for obsessive compulsive disorder, social anxiety disorder, or ADHD (Sizoo, et al., 2009).

While ADHD has been shown to have high rates of substance abuse disorder comorbidity and autism has not shown as high rates, autism often co-occurs with ADHD.  About 28%-80% of autistic individuals also meet the diagnostic criteria or show signs of ADHD, but often will get one diagnosis or the other, and the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders specifically prohibited an ADHD diagnosis in addition to an autism diagnosis, therefore it is likely that many autistic individuals are underdiagnosed for ADHD and at higher risk for SUD as well.  Autistic individuals with SUD are more likely to abuse alcohol than illegal drugs because of the complex social interactions needed to secure illegal substances and the challenges that autism poses in negotiating these spaces (Kronenberg, et al., 2015). 

Recovery and resilience interventions for autistic substance abusers
There have been few research studies to find appropriate SUD treatments for autistic individuals, and traditional processes such as group therapy may be counterproductive for some autistic clients because it may create undue stress in trying to verbalize substance abuse challenges while balancing social skills deficits.  On a positive note, autistic clients may have higher levels of program completion once they decide they will enter treatment and may have greater potential for improvement because they were operating from a greater initial social deficit and theory of mind and mentalizing skills can be learned (Kaltenegger, Philips, Wennberg, 2020).  50% of clients drop out of SUD treatments before completing their programs, and autistic clients are more in need of individualized treatments.  This is partly due to the fact that autistic folks with SUD tend to have more extensive and severe needs than their neurotypical peers, often involving not only medical, psychological, and social support, but also housing, transportation, education, and legal support (Helverschou, Brunvold, Arnevik, 2019). 

Autistic women often have increased needs than autistic men as they have increased risks of mortality, incarceration, and co-morbidity.  There is a need for more research in this subgroup and how best to serve them (Olsson, Fridell, 2018).  As clinicians working with SUD in the disability community may be working with a triple or more diagnosis and the client needs can be very intense, it is especially important to work collaboratively with other professionals.  Collaboration with psychiatrists can be especially important to provide appropriate pharmaceutical interventions and ensure proper care and support around those pharmaceutical interventions.  Often times, treatments should be prioritized and the clients understanding of what each treatment is for should be scaffolded so they are able to understand and be an active participant in their treatment path (Lakhan, 2020).

One treatment method that shows promise for autistic individuals with SUD is adapted Cognitive behavioral therapy (CBT).  Adaptations in CBT for autistic people include using familiar routines and activities with structured roles between the client and therapist to maintain predictability and structure that can help reduce anxiety.  Similar to working in other sensitive groups, it can be helpful to set-up community guidelines for behavior of both client and therapist during treatment and set goals for treatment and decide on the treatment plan together.   (Helverschou, Brunvold, Arnevik, 2019).  I have used CBT for myself and autistic students and have found that it feels more tangible as a therapy option.  CBT appeals to my autistic brain to have concrete tasks and explanations why this may work and seems to have more clear response goals, which I found helpful to have.


Relapse prevention for autistic individuals and substance abuse
To prevent relapse with autistic clients, therapy needs may need to be more extended than for a typical individual in substance abuse treatment.  Therapists treating autistic people with SUD have said the therapy was more demanding than work with neurotypical SUD clients; they needed to be more structured, use more directive therapy strategies, and SUD treatment took more sessions.  Treatment needs are partially so much more demanding because many autistic clients needed education about autism itself to understand how and why their brains operate differently than those around them, education about drugs to truly understand the scientific results of specific drugs on the brain and body, assistance navigating their social contacts and pro-social coping mechanisms to use when experiencing stress, housing assistance, leisure activities support and facilitation advice, and employment support to be able to function in their professional environment without relying on substance use to self-medicate.  Some autistic clients tended to view their therapists as their friend and there was a higher-than-average emotional involvement with autistic clients that suggests a need for supervision and collaboration when working with autistic people in recovery (Helverschou, Brunvold, Arnevik, 2019). 

It is helpful for autistic clients with substance abuse disorder to be treated with integrated mental health support and substance abuse treatment instead of a fragmented separate care for each disorder.  Finding a practitioner who can work with other specialists, autism experts, and psychiatrists and collaborate on appropriate care is essential for autistic people to receive effective support (Kronenberg, et al., 2015).  Many autistic people have psychological care needs that bleed into physical care needs and care is most effective when all parties are operating with the same information.  For example, I once became very sick with serotonin syndrome because I was on an anti-depressant and took two triptan migraine pills, not realizing these prescriptions could have a drug interaction.  Clients need to be part of their therapies and feel included to prevent relapse.

Treatment for autistic individuals with SUD should focus on helping the client learn coping and socialization skills so they can live their life to the fullest potential and reduce their troubling symptoms, so they are better able to function.  Because autism affects so many areas of life that are also impacted by substance abuse, but the added issue of social impairment means that autistics often turn to substance use to help their social functioning, but substance use can have much more dramatic effects on an autistic individual because they cannot process their social interactions with the fluency of a neurotypical person, often resulting in significant support needs in mental health, financial literacy, unemployment, family and social interactions, adult living skills such as maintaining a home, activities, and sexual health support (Kronenberg, et al., 2015).

Another component to consider for autistic people with deficits in social-emotional reciprocity and communication is that motivators that seem clear to the average person may not be clear to an autistic person and they may need potential harms explained to them.  For example, an autistic youth caught for drug dealing did not immediately understand the harm that using drugs could have on minors because they did not have the ability for easy empathy and needed to have the effects described to them before they grasped the problem.  For true rehabilitation, extinction of substance use, and social integration, explicit teaching of theory of mind and mentalizing skills is necessary (Riolo, et al., 2021).

I believe that the most important components of effective care for an autistic person with substance abuse disorder are education about the exact and real functions of substance use on the brain and body, physical care support that may include prescriptions for anxiety and/or depression, which are rampant among adult autistics of normal intelligence, and especially common among adults autistic people with substance use disorder, emotional support in self-regulation and assistance in understanding social roles, expectations, and support to understand and meet these expectations, and traditional therapy of some sort to help the individual process through their experiences and find a way to feel grounded and to live a life of purpose.  My biggest problems came from not knowing I was autistic and being desperate to “be normal” and not feel the constant anxiety of hypervigilance that was my life then.  Help autistic people live their lives and help them find the meaning in their lives that allows for them to enjoy the process.

References
Butwicka, A., Långström, N., Larsson, H., Lundström, S., Serlachius, E., Almqvist, C., Frisén, L., & Lichtenstein, P. (2017). Increased Risk for Substance Use-Related Problems in Autism Spectrum Disorders: A Population-Based Cohort Study. Journal of Autism & Developmental Disorders, 47(1), 80–89. https://doi-org.csu.idm.oclc.org/10.1007/s10803-016-2914-2

Feder, R. (2020). Ten Years of Experience With Buprenorphine in a Private Psychiatric Outpatient Practice. American Journal on Addictions, 29(6), 508–514. https://doi-org.csu.idm.oclc.org/10.1111/ajad.13060

Helverschou, S. B., Brunvold, A. R., & Arnevik, E. A. (2019). Treating patients with co-occurring autism spectrum disorder and substance use disorder: A clinical explorative study. Substance Abuse: Research and Treatment, 13 Doi: HTTPs://doi-org.csu.idm.oclc.org/10.1177/1178221819843291

Houting, J. D., (2019, September). Why everything you know about autism is wrong. [Video file]. Retrieved from: https://www.ted.com/talks/jac_den_houting_why_everything_you_know _about_autism_is_wrong

Kaltenegger, H. C., Philips, B., & Wennberg, P. (2020). Autistic traits in mentalization‐based treatment for concurrent borderline personality disorder and substance use disorder: Secondary analyses of a randomized controlled feasibility study. Scandinavian Journal of Psychology, 61(3), 416–422. https://doi-org.csu.idm.oclc.org/10.1111/sjop.12595

Kronenberg, L. M., Goossens, P. J. J., Etten, D. M., Achterberg, T., & Brink, W. (2015). Need for Care and Life Satisfaction in Adult Substance Use Disorder Patients With and Without Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD). Perspectives in Psychiatric Care, 51(1), 4–15. https://doi-org.csu.idm.oclc.org/10.1111/ppc.12056

Lakhan, R. (2020). Dual diagnosis in substance abuse assessment and treatment for alcohol and drug educators. Journal of Alcohol and Drug Education, 64(3), 84-86. Retrieved from http://proxy1.calsouthern.edu/login?url=https://www-proquest-com.csu.idm.oclc.org/scholarly-journals/dual-diagnosis-substance-abuse-assessment/docview/2507264742/se-2?accountid=35183

Mogavero, M. C. (2018). What do criminal justice students know about autism? an exploratory study among future professionals. Journal of Police and Criminal Psychology, 1-11. Doi: HTTPs://doi-org.csu.idm.oclc.org/10.1007/s11896-018-9302-0

Nylander, L., Axmon, A., Björne, P., Ahlström, G., & Gillberg, C. (2018). Older adults with autism spectrum disorders in Sweden: A register study of diagnoses, psychiatric care utilization and psychotropic medication of 601 individuals. Journal of Autism and Developmental Disorders, 48(9), 3076-3085. Doi: HTTPs://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3567-0

Nylander, L., Holmqvist, M., Gustafson, L., & Gillberg, C. (2013). Attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) in adult psychiatry. A 20-year register study. Nordic Journal of Psychiatry, 67(5), 344–350. https://doi-org.csu.idm.oclc.org/10.3109/08039488.2012.748824

Olsson, T. M., & Fridell, M. (2018). The five-year costs and benefits of extended psychological and psychiatric assessment versus standard intake interview for women with comorbid substance use disorders treated in compulsory care in Sweden. BMC Health Services Research, 18 Doi: HTTPs://doi-org.csu.idm.oclc.org/10.1186/s12913-018-2854-y

Riolo, A., Keller, R., Battaglia, R., & Albert, U. (2021). Probation of the offender with high functioning autistic traits and comorbidity. A case study. European Psychiatry, 64, S377. Doi: HTTPs://doi-org.csu.idm.oclc.org/10.1192/j.eurpsy.2021.1010

Sizoo, B. B., van den Brink, W., Gorissen-van Eenige, M., Koeter, M. W., van Wijngaarden-Cremers, P. J. M., & van der Gaag, R. J. (2009). Using the Autism-Spectrum Quotient to Discriminate Autism Spectrum Disorder from ADHD in Adult Patients With and Without Comorbid Substance Use Disorder. Journal of Autism & Developmental Disorders, 39(9), 1291–1297. https://doi-org.csu.idm.oclc.org/10.1007/s10803-009-0743-2

Stagg and Belcher. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine. DOI: https://doi.org/10.1080/21642850.2019.1684920

Xi, T., & Wu, J. (2021). A review on the mechanism between different factors and the occurrence of autism and ADHD. Psychology Research and Behavior Management, 14, 393-403. Doi: HTTPs://doi-org.csu.idm.oclc.org/10.2147/PRBM.S304450

Autistic Behaviors and Developmental, Physiological, Psychological, and Sociological Causes and Treatments​
by Lisa R. Macafee
Department of Psychology, California Southern University
PSY 8701 Physiological Psychology
Dr. Lucas
January 15, 2022
 
Behaviors of autism
While not strictly a behavioral disorder, most challenges for individuals with autism stem from managing the behaviors associated with having autism spectrum disorder (ASD). In this paper, ASD will be referred to interchangeably as autism, neurodivergent, or ASD.  Individuals with ASD will be mostly referred to as autistic in this paper instead of the person-first language of ‘person-with-autism’ more commonly used in other disability rights movement.  The autistic disability rights movement generally supports identity-first language because being autistic is core to our neurology and what makes us who we are, autism is not an accessory to who we are, it is an integral part of who we are.  I am diagnosed autistic and will incorporate my own experiences, and those of my two autistic children into this paper. 

To be diagnosed as autistic according to the DSM-V, an individual needs to have, from an early age, significant deficits in social communication and two of the following behaviors: stereotyped or repetitive behaviors, inflexibility or insistence on routines, restricted or fixated interests (called by the autistic community “special interests”), or hyper or hypo-reactivity to sensory stimulus (CDC.gov, 2002).  Core symptoms associated with autism are challenges in social communication, theory-of-mind, emotional control, cognitive function, executive function, perception, and motor control (Nabetani, Mukai, 2022). This paper will focus on the behaviors associated with an autism diagnosis and the developmental, physiological, psychological, and sociological causes, along with traditional and alternative treatments.

Developmental causes
Autism is defined as a developmental disorder.  Pre-dispositions for autism are present from birth and become more apparent as individuals develop.  Approximately 2% of the population has been diagnosed autistic and diagnosis are growing in rate due to broadened diagnostic criteria and increased awareness of differing ways autism can present.  Males are still diagnosed three to four times as often as females, but this gap is shrinking as providers are learning how autism in girls looks different, and autistic girls tend to present with more social aptitude (Weir, Allison, Ong, Baron-Cohen, 2021).  There may be a developmental factor involved in autism in where adaptive autistic traits are inherited independently, but when a threshold is crossed, these traits begin to synergize and reinforce cognitive development and neural connectivity in ways that can be socially maladaptive (Paul, Arora, Midha, Vu, Roy, Belmonte, 2021).

Research demonstrates that higher prenatal androgen exposure correlates with decreased social functioning ability.  This hypothesis explains why there are more males diagnosed with autism than females at a rate of four to one.  This ‘extreme male brain theory’ posits that prenatal exposure to testosterone at critical developmental phases leads to autism.  One metric used to assess prenatal androgen exposure is to measure the digit ratio of the index and ring fingers.  Individuals exposed to more androgen in the womb typically have longer ring fingers and are typically male, but women with autism often have longer ring fingers as well.  Other measurements of prenatal androgen include measurements of masculine traits in facial structure and umbilical cord testosterone levels.  Each metric of androgen exposure leading to higher masculine traits correlates with higher autistic traits.  Androgynous traits have also been correlated with higher rates of autistic traits as autistic females have more masculine faces, but autistic males have less masculine faces than their typical peers.  I am an autistic woman whose ring finger happens to be longer than my index finger.  I also have other masculine physical traits such as broad shoulders, and more masculine personality traits.  This research fascinates me because my friends in school always described me as like a boy with ovaries, and I have to agree!  Getting an autism diagnosis for myself explained so many of the questions I have had about why I was different from typical girls (McKenna, Huang, Vervier, Hofammann, Cafferata, Al-Momani,...  Michaelson, 2021).

Physiological causes
One of the reasons autistic people tend toward routines is that our brains are wired for rule-based systematizing.  While all people have some degree of autistic traits, the threshold for a diagnosis requires that these traits cause significant difficulty in life, and heightened levels of autistic traits scale with heightened levels of brain efficiency.  Apparently, the brains of people with impaired social responsiveness and attention orienting show a greater efficiency of brain-wide functional networks and systematizing in the medial/anterior temporal lobe.  In addition, individuals with higher traits of systematizing and difficulty in social perspective-taking (theory-of-mind) have brains with greater structural network efficiencies, mainly in the right temporoparietal junction.  This greater brain efficiency could mean that autistic minds have specialized to have greater cognitive efficiency in non-social tasks.  For example, I can research autism for hours, but have genuine anxiety about making a phone call and need to script out what to say.  Autistic brains also seem to tend towards higher bottom-up gamma mediated connectivity and reduced top-down beta mediated signaling to information flow which could underlay these autistic brain differences (Paul, Arora, Midha, Vu, Roy, Belmonte, 2021).

Autistic individuals tend to have restricted diets and have increased rates of eating disorders that can range from picky eating, anorexia, restricted food intake disorder, or bulimia.  Autistic females are particularly more likely to engage in emotional eating behaviors and autistic individuals are overrepresented in having food allergies and sensitivities.  Exercise is also challenging for some autistic individuals who may prefer screen time, aren’t as drawn by social motivation for team sports, or have motor control challenges that make playing sports less attractive.  Sleep disturbances are common in autistic youth and adults and is not explained by epilepsy or other seizure disorders.  These factors may explain why autistic individuals have increased rates of obesity and are at greater risk for chronic conditions such as type II diabetes, certain cancers, respiratory conditions, and cardiovascular conditions than their typical peers.  Statistically, autistic individuals tend to have lifespans 16-38.5 years shorter than typical expectations.  The importance of healthy diet, exercise, and sleep is underrated in much of the United States but seems particularly challenging to achieve for autistic individuals (Weir, Allison, Ong, Baron-Cohen, 2021).

Psychological causes
While autism is a developmental disorder and is part of the neurology of each individual, how each person is impacted by having autism varies dramatically.  At times, peer interactions can create cyclical patterns that entrench the autistic individual in more autistic behaviors.  For example, autistic individuals often experience social anxiety because they know they are different and want to have friends, but experience challenges in realizing these relationships.  Negative peer experiences are associated with behaviors that autistic individuals experience when under stress, as will often be the case in social settings.  For example, meltdowns are often experienced when the autistic individual cannot process more information and is being asked to engage with their environment more quickly than they are able to.  When executive function starts to shut down after decision fatigue or masking, many autistic individuals find it difficult to keep up with hygiene demands or simply forget to wear deodorant or change clothes.  As stressors mount, individuals may resort to rigid rule-keeping to maintain control over their situation.  Self-injury may occur when the world is too “loud”, there are too many stimuli, and too many things happening at once.  The difficult part of this is that the more negative peer interactions an individual experiences, the more likely they are to be stressed by social interactions, and the more likely they are to exhibit behaviors that lead to negative peer interactions!  It’s a frustrating cycle for many individuals.  It’s important to give autistic individuals tools to cope with their stressors that are more socially acceptable, such as finding socially appropriate stims (self-soothing or self-stimulating behaviors that allow the individual to manage stress) or finding ways to avoid having meltdowns in front of their peers (giving them a safe place to go and permission from teachers or supervisors to do so).  Establishing routines that incorporate hygiene demands for the day help to both manage executive function stress by having less decisions to make and ensure hygiene is followed while hopefully leaving cognitive space for flexibility with peers, if their executive function is not overtaxed (Adams, Taylor, Bishop, 2020).

Social anxiety disorder occurs at an alarming rate of 50%-70% in autistic adults and social anxiety rates correlate with social skills deficits.  Social anxiety results in intense fear of, and negative evaluation of social situations and social situation avoidance.  Experiencing difficulties with social interaction makes social interaction more anxiety-producing!  This can be a self-reinforcing cycle as avoiding social situations leads to less competence in social situations, more anxiety, and poorer performance, which results in more social anxiety.   Negative social experiences resulting from autistic behaviors increases bullying and rejection rates, while overstimulation from the senses can cause avoidant behaviors and anxiety to social situations as well.  Experiencing social anxiety can lead to more intense behaviors associated with autism and more stress (Bemmer, Boulton, Thomas, Larke, Lah, Hickie, Guastella, 2021).

If stressors are not appropriately managed, it becomes far too common for autistic individuals to experience depression and suicidal ideology.  Having an autism diagnosis is often a protective factor against suicide.  Those most at risk for suicidal thoughts and attempts are adults with a late diagnosis or no diagnosis.  From my own experience of being diagnosed autistic at the age of 37, having that diagnosis was such a relief.  It explained many of the challenges I experienced and allowed me access to others like me who have found coping strategies for the things we often struggle with.  After receiving my own diagnosis, I went back to school to work in a career field that I enjoy, instead of continuing to work in a self-punishing environment.  I allowed myself grace to care for myself and an autism diagnosis allowed me to look at myself as different instead of broken.  Women are particularly underdiagnosed as autistic, and this has a harmful effect on their health as 40.6% of all people who attempted suicide without an autism diagnosis scored above the autism diagnosis cut-off and 45% or women who meet autism diagnostic criteria but are undiagnosed have made a suicide plan. 16% of these women attempted suicide.  11% of people with depression and 15% of women with borderline personality disorder also meet diagnostic criteria for autism and those with comorbid diagnosis are the individuals most at risk for suicide.  I struggled with depression and anxiety when I was younger and wish I had learned more about autism because now I know that most of the pain and trauma I experienced was from now knowing why I was different.  If I had a developmental and neurological fact (an autism diagnosis) to explain this difference, it would have made a great impact on the challenges I experienced (Cassidy, Bradley, Cogger-Ward, Rodgers, 2021).

Sociological causes
Autism is in no small part influenced by society around us.  I have an autistic friend that states with firm belief that they are not internally disabled, only disabled by the way society expects us to react to it.  While it is true that autistic individuals experience social communication and behavior challenges, we are often extremely efficient (I will get my projects done for work even if I’m working for free), trustworthy (I will not lie or betray what I believe is correct, but don’t ask me to lie for you!), reliable (I have called work from the ER to make sure they are doing okay without me and offer to send emails from the hospital!), and cost-effective employees (see all of the above: the hard work, persistence, ethical nature, and pride that drives us).  All of that being said, a majority of autistic young adults have difficulty finding a job because we present differently to the world and employers hesitate at differences.  In the United States, much of our collective concepts of adult self-worth are built around employment, as well as many social networking and friendship opportunities (Solomon, 2020). 

For myself, I feel a great deal of confidence and self-esteem currently because I’ve worked very hard to gain full-time employment (split between two colleges, but it still counts)!  I changed careers five years ago and had difficulty finding employers to trust me with their work.  I ran into supervisors who tried to have me fired through ingenuine employee evaluations.  My assumption is that I made these traditional women uncomfortable by being a non-traditional woman and rather than live with this discomfort, they assumed that their discomfort at my difference was a signal they should listen to and attempt to have me removed.  I fought the evaluation and won, but it’s a terrifying situation to be in to be ostracized for being different.  Some maladaptive autistic behaviors are reinforced by negative experiences in school and the workforce leading to financial insecurity, which can lead to wearing clothing that is not appropriate for the workplace, unhealthy eating habits, and sleeping less due to mental health stressors.  Only 58% of autistic individuals in their 20s were employed in 2015.  These rates are below rates for individuals with learning and intellectual disabilities and those of ex-convicts.  Employers seem to be uneducated about what autism is and how it works, and fear increased costs and declining productivity, when in many cases the opposite would be true if they hired autistic individuals.  Being unemployed often results in social isolation and increased social communication deficits.  For those autistic adults who are employed, it is typically for lower wages and less hours.  In a 2018 CDC study they found that of autistic employees, 80% worked part-time and had a median income of $160 per week (the average American makes $961 per week).  Employment challenges faced by autistic individuals affect mental and physical health of autistic people.  We deserve to work and be able to support ourselves (Solomon, 2020).

Traditional and alternative treatment approaches
Behaviors associated with autism can be difficult to manage.  When autistic individuals experience stressors, it is common for executive function to be increasingly impaired and decision making to suffer.  Thus, when an autistic person is most in need of support, they are least likely to be able to secure it.  There are currently no recommended pharmacological treatments for core autism features of impaired social communication and restricted or repetitive behaviors, only recommendations for how to treat symptoms such as anxiety.  Even treatments for anxiety in autism are not well-researched as to how autistic brains respond differently than neurotypical brains and may need different types or levels of treatments (Aran, Harel, Cassuto, Polyansky, Schnapp, Wattad,… Castellanos, 2021). 

The most commonly used therapy for autism is the controversial and much maligned (in the autism community) applied behavioral analysis (ABA).  There is research on both sides pointing to both the efficacy of ABA, and its abusive factors  This is a topic best left for another paper, but please know that if you are interested in reading more on this topic, there is literature available. One additional support for autism that has been shown as effective in reducing emotional dysregulation and outbursts. and by extension, social communication, is exercise.  Autistic individuals who exercised on a regular basis were shown to have increased emotional regulatory abilities and a reduction in internal and external behavior problems such as stereotypic behaviors, need for stimming (self-stimulating or soothing behaviors), as well as general benefits of increased strength, attention, self-esteem, and self-efficacy (Tse Andy, 2020).

Modified cognitive behavioral therapy (CBT) has been used with great success for autistic individuals experiencing social anxiety.  In one example of a modified CBT session, clients come for ‘café time’ and practice social skills while building group rapport among other autistic individuals.  Social anxiety is a common component of decreased social ability that 50%-70% of autistic adults experience.  CBT can help reduce social anxiety, which reduces other core symptoms and challenging behaviors like restricted or repetitive behaviors that are often stress-induced, while increasing social motivation.  Use of modified CBT also helps improve overall mental health conditions of anxiety, depression, psychological distress, and stress.  In addition to being functional, the recipients spoke favorably about their enjoyment of the CBT process, which is in stark contrast to recipients of ABA.  Overall, increasing mental health and social acuity can reduce the severity of autism as a disability and allow autistic individuals to live more authentic and happy lives with reduced stress (Bemmer, Boulton, Thomas, Larke, Lah, Hickie, Guastella, 2021).

One of the more controversial treatment options for challenging autistic behaviors is cannabis.  Consuming cannabis can reduce hostile feelings that sometimes underlay social communication challenges and enhance interpersonal communication.  Cannabidiol or CBD does not carry the psychoactive or de-motivational characteristics of THC and is being seen increasingly as a beneficial pharmaceutical option.  CBD has also been shown to have antipsychotic, antiepileptic, and neuroprotective properties.  There are also studies showing that individuals with autism seem to have impaired function of the endocannabinoid system of the brain and that CBD may work to restore optimal function.  Research is needed comparing CBD and THC effects and find more optimal treatments for the core symptoms of autism using cannabis (Aran, Harel, Cassuto, Polyansky, Schnapp, Wattad, . . . Castellanos, 2021).

Another possibility in autism therapy could be cell therapy.  Many attempts at treating autism’s core symptoms have been found unsatisfactory.  Researchers have found a connection between aberrant microglial activity and excessive synaptic pruning resulting in less synaptic plasticity often found in autism.  Inflammation due to allergens of other chronic sources can lead to postsynaptic surplus that can also lead to autism behaviors.  With aberrant microglial function in mind, it has been found that autologous cord blood cells can have a protective effect on the impairment of microglia, inflammation, and oxidative stress that researchers have associated with the development of autism traits and use of these blood cells can prompt neurological regeneration.  Human CD34 positive cells release growth factors that affect brain derived neurotrophic factor production whose disruption is often associated with autism.  It is possible that by using these blood cells in treatment of autism, much like they can be used in treatment of those with epilepsy, cell therapies could alter microglial function and immune system responses to assist in treatment of autism (Nabetani, Mukai, 2022).

There is much yet to learn about autism in adults and research into effective treatments to improve quality of life for autistic individuals.  Many of the challenges autistic people face are stressors due to the world’s reaction to our behaviors.  Teaching autistic people how to better manage their mental health and behaviors and teaching the world at large more about autistic people is my goal.  We can all live better lives by learning more about ourselves and each other.

References
Adams, R. E., Taylor, J. L., & Bishop, S. L. (2020). Brief report: ASD-related behavior problems and negative peer experiences among adolescents with ASD in general education settings. Journal of Autism and Developmental Disorders, 50(12), 4548-4552. doi:http://dx.doi.org/10.1007/s10803-020-04508-1

Aran, A., Harel, M., Cassuto, H., Polyansky, L., Schnapp, A., Wattad, N., . . . Castellanos, F. X. (2021). Cannabinoid treatment for autism: A proof-of-concept randomized trial. Molecular Autism, 12, 1-11. doi:http://dx.doi.org/10.1186/s13229-021-00420-2

Bemmer, E. R., Boulton, K. A., Thomas, E. E., Larke, B., Lah, S., Hickie, I. B., & Guastella, A. J. (2021). Modified CBT for social anxiety and social functioning in young adults with autism spectrum disorder. Molecular Autism, 12, 1-15. doi:http://dx.doi.org/10.1186/s13229-021-00418-w

Cassidy, S. A., Bradley, L., Cogger-Ward, H., & Rodgers, J. (2021). Development and validation of the suicidal behaviours questionnaire - autism spectrum conditions in a community sample of autistic, possibly autistic and non-autistic adults. Molecular Autism, 12, 1-22. doi:http://dx.doi.org/10.1186/s13229-021-00449-3

CDC.gov (2020). Autism spectrum disorder (ASD) diagnostic criteria. Centers for Disease Control and Prevention.  Retrieved from https://www.cdc.gov/ncbddd/autism/hcp-dsm.html on January 7th, 2021.

McKenna, B. G., Huang, Y., Vervier, K., Hofammann, D., Cafferata, M., Al-Momani, S., . . . Michaelson, J. J. (2021). Genetic and morphological estimates of androgen exposure predict social deficits in multiple neurodevelopmental disorder cohorts. Molecular Autism, 12, 1-18. doi:http://dx.doi.org/10.1186/s13229-021-00450-w

Nabetani, M., & Mukai, T. (2022). Future perspectives on cell therapy for autism spectrum disorder. Biocell, 46(4), 873-879. doi:http://dx.doi.org/10.32604/biocell.2022.018218

Solomon, C. (2020). Autism and employment: Implications for employers and adults with ASD. Journal of Autism and Developmental Disorders, 50(11), 4209-4217. doi:http://dx.doi.org/10.1007/s10803-020-04537-w

Paul, S., Arora, A., Midha, R., Vu, D., Roy, P. K., & Belmonte, M. K. (2021). Autistic traits and individual brain differences: Functional network efficiency reflects attentional and social impairments, structural nodal efficiencies index systemising and theory-of-mind skills. Molecular Autism, 12, 1-18. doi:http://dx.doi.org/10.1186/s13229-020-00377-8

Tse Andy, C. Y. (2020). Brief report: Impact of a physical exercise intervention on emotion regulation and behavioral functioning in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(11), 4191-4198. doi:http://dx.doi.org/10.1007/s10803-020-04418-2

Weir, E., Allison, C., Ong, K. K., & Baron-Cohen, S. (2021). An investigation of the diet, exercise, sleep, BMI, and health outcomes of autistic adults. Molecular Autism, 12, 1-14. doi:http://dx.doi.org/10.1186/s13229-021-00441-x

This was a research paper that I got to write for my doctorate program!
 
Lisa R. Macafee
Department of Psychology, California Southern University
PSY 8700 Psychopharmacology
Dr. Trachanel Cater
October 18, 2021
 
Anxiety and Autism
​This paper analyses the psychological, neurological, biochemical, genetic, environmental and socio-cultural aspects of anxiety in autistic populations, with specific regard to psychopharmacological intervention.  The terms autistic, autism, autism spectrum disorder (ASD), and neurodivergent are used interchangeably to refer to the autistic population.  Individuals with autism often prefer identity-first language (autistic) instead of person-first language common in other disability rights movements (person with autism).

I will briefly share my own experiences with anxiety and autism.  I am a 39-year-old autistic female.  I suffered with undiagnosed serious depression and anxiety from twelve through twenty when I finally got a diagnosis of depression and later anxiety after leaving an abusive relationship.  I missed obvious signs that the relationship was troubled and exhibited magical thinking and communication deficits but am highly intelligent and have learned to mask traits that make others uncomfortable.  I started studying psychology in high school and learned how to avoid scrutiny from others.  No one in my circles ever thought I needed support because I was functioning in a state of constant alertness and anxiety to cover my behaviors.  I assumed that I had inherited a biological predilection for anxiety because everyone in my family has struggled with it.  What I now know is that we were likely generations of intelligent autistics and suffered through crippling anxiety trying to live in a world that we did not understand without getting strategies to support our needs.  I learned I was autistic after my son and daughter were diagnosed autistic and started researching autism to be able to best support my children.  It became obvious to me in researching that I was also autistic, and I sought a diagnosis.  It has been so much easier controlling my depression and anxiety with a toolkit of responses for autism and to understand why and how I am different from neurotypical individuals.

Anxiety disorders in autistic populations
Autism spectrum disorder consists of significant difficulties in communication and social interactions as well as repetitive or restrictive patterns of behavior, interests of activities.  Estimates vary, but the rate of autism is currently about 2% of the population and is growing.  For autistic individuals who are called “high-functioning” which means the individual has higher intelligence and is verbal, being aware of their own deficits and unusual behaviors very often leads to anxiety.  Intensity of anxiety in autistic individuals often seems to scale with higher intelligence as the individual tries to adapt their functioning to societal expectations.  “High functioning” autistic individuals are often able to match their performance to expectations, but at a great intellectual cost of anxiety.  They need to focus on and control every movement, analyze every word, and anticipate other people’s reactions.  Often the autistic individuals who seem to be “high functioning” are suffering immensely from the stress of masking.  As such, the term “high functioning” is reviled in the autistic communities as it is often used to deny services to individuals who are not seen as needing them as much as someone “low functioning”, an ableist and discriminatory term.  Overall, autism is a very individualized disability and needs individualized and flexible care (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021).

Many factors contribute to the fact that autistic individuals often live with comorbid mental health challenges.  Rates of anxiety diagnosis in autistic populations vary from 11.1% in adults to 41.9% in children, much higher than the neurotypical population (Deb, Roy, Lee, Majid, Limbu, Santambrogio, . . . Bertelli, 2021).  77.7% of autistic children also have a mental health condition and 49.1% have two or more compared to 14.1% of children without autism having a mental health disorder.  Autistic individuals tend to have higher rates of mental health disorders as they get older.  It is theorized that the communication challenges that are a part of autism cause increased social isolation which can contribute to depression and anxiety.  To compound this, many high functioning individuals are not diagnosed with autism, but only with anxiety.  If anxiety is a symptom of untreated autism, which continues to go untreated because they have a diagnosis of anxiety, treatments for anxiety alone are unlikely to be sufficient to resolve the care needs for the autistic client (Villalpando, N. 2021).

Oftentimes with autism, mental health is overlooked in favor of physical care.  Mental health for children and adults with autism is especially important.  While health insurance often covers treatment and prescriptions, there is a demand for care that exceeds the supply and many autistic individuals are not able to navigate the health care system to get the care that they need, causing more anxiety and stress to their lives.  Anxiety is more commonly diagnosed in White non-Hispanic children with autism, while children of color with autism are often diagnosed with conduct disorder or ADHD when anxiety may be a more appropriate fit.  There is racial bias in those who diagnose children and White children are often treated with a more open mind to the challenges that the child experiences while children of color are given less empathy and compassion.  Hispanic children are diagnosed the least with any mental health condition, pointing to structural barriers and health care systemic bias.  Autistic individuals experience difficulty getting mental health care.  Autistic individuals who do not receive the mental health care they need are less likely to participate in sports or work and this lack of social contact becomes a self-replicating cycle wherein they become more isolated and anxious because they do not receive the services they need to function.  Anxiety is the most common diagnosis for autistic adults (Drexel university, 2021).

Etiology of anxiety in autistic populations
An autism diagnosis means that individuals experiences communication and social interaction difficulties and has restrictive or repetitive behaviors.  While no one yet knows why autism happens, it appears to be hereditary and there are certain exposures that increase the risk of autism in utero and early childhood.  These point to both genetic and epigenetic factors.  There are patterns of gene expressions and genes that are more common in people with autism (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021).  Autistic individuals share significantly more genes from Neanderthals which has brought up interesting conversations of autistics possibly being the mixed-genetic descendants of Neanderthals.  Some Neanderthal traits carry over and autistic individuals have physically larger brains and skulls.  Commonly accepted thought is that autistic individuals have different biological necrologies than the neurotypical.  Our brains are physically different and that causes different behaviors and needs (Grandin, 2014). 

As autistic children of higher intelligence grow older and become aware of their differences from neurotypical peers, they often experience anxiety trying to mask their autistic traits and fit in.  As they get older, they often have trouble with social relationships, which causes anxiety.  Living in a neurotypical world as a high functioning autistic means constantly masking, acting, suppressing self-stimulating behaviors (called stims), which all contribute to living in a state of hyper-vigilance and high levels of anxiety.  For lower-functioning autistics, the behaviors they exhibit are direct responses to stresses that they cannot always articulate.  Are the lights too bright?  Is the desk too hard?  Is the faint hum from the refrigerator that no one else notices sounding like a helicopter in its intensity and attention focus?  Can the individual communicate any of this effectively to get their needs met?  Autistic individuals experience the world differently from neurotypical folk and will have outbursts of behaviors when their stress levels are no longer bearable or when life demands are put on them that they cannot accommodate.  If the autistic individual’s behavior causes those around them to be upset, this causes more stress and anxiety to the autistic individual who knows they are upsetting people, but often feels out of control to stop (Al-Oran, Khuan, 2021).

Another contributing factor to anxiety is the fact that autistic people generally experience more lifetime social, psychological, and physical stressors than their neurotypical peers and perceive these stressors more intensely.  Autistic adults are often less able to cope with stressors because they are more socially isolated, experience more loneliness, and have less social support.  These heightened stressors and the body’s response to them lead to worse physical and mental health.  Autistic children more frequently live in poverty and experience adverse childhood experiences.  These experiences and the social reactions received because of them can bring about chronic anxiety and hypervigilance.  Autistic people are more likely to have been bullied, experience social isolation, and to experience physical, sexual, and emotional abuse because of social naivete.  Autistic adults are more likely to un- or underemployed, have difficulty with the justice system, and experience social stigmatization.  If routines relied on to function are disrupted, this can create a spike in anxiety over what may seem inconsequential to a neurotypical individual, but for an autistic is very challenging.  Add to that the communication deficits that autistic individuals experience leading to greater social challenges and less robust social support networks that increase risk of suicide, self-harm, and psychopathology.  All these factors contribute to anxiety (Moseley, Turner-Cobb, Spahr, Shields, Slavich, 2021).

Psychopharmacology treatment
Research analysis suggests that 61.5% of autistic adults and 41.9% of autistic children use some form of psychotropic medication.  Among older generation tricyclic medications, evidence of efficacy in treating anxiety of autistic populations is lacking, and side effect management for individuals with autism may be more difficult than for neurotypical populations.  For these reasons, tricyclics are not recommended in treating autistics with anxiety.  When looking at SSRIs for use for children with autism, there has been weak research that suggests minimal benefit and increasing evidence of harm in SSRI use.  Effectiveness of use of SSRIs in autistic adults shows minimal clinical benefit, with citalopram showing the most significant benefits.  Benzodiazepines could be used for short-term treatment, but not for long-term use because of their cognitive affects and addictive quality.  Likewise, high doses of beta-blockers are not recommended due to side effects risks.  Overall, research does not condone or refute use of medications for autistic adults.  Care should be taken to weigh the possible benefits against side effects, which are often more pronounced in autistic individuals.  Providers should closely monitor any medications prescribed for benefits and side effects.  Individuals with autism are often overmedicated with minimal benefit and (Deb, Roy, Lee, et. all, 2021).

While research in treating autistic anxiety using traditional psychopharmacological methods is lacking, some researchers are looking to non-traditional methods for atypical minds.  CBD has been used increasingly among autistic populations to reduce anxiety and improve sleep, with 22% of parents and caregivers giving CBD to autistic children.  CBD use in autistic populations has been shown in clinical trials to not only reduce anxiety and improve sleep for anxious autistics, but also decrease self-harm, hyperactivity, irritability, aggressiveness, depression and cognitive impairments.  Given the limited legality of cannabis in much of the world, research is lacking and cannabis or CBD cannot be FDA approved because they are illegal at the federal level in the United States.  There are promising signs of autistic individuals becoming more independent with the use of cannabis products.  More research is needed (National organization for reform of marijuana laws, 2021).

As there have been no medications proven to to improve the lives of autistic individuals, researchers are looking into more controversial and novel approaches to find solutions.  Psylocibin “magic” mushrooms and ecstasy in micro-doses have been shown to have benefits for autistic individuals where traditional medications have failed. Psilocybin has shown positive results in sub-hallucinogenic doses to improve anxiety and cognition problems for autistic individuals and is likely to be FDA approved in 2022 or 2023.  Similarly, ecstasy or MDMA micro-dosing has shown significant improvement when autistic individuals used to reduce social anxiety and impairments in social functioning (Ponieman, 2021).

Psychotherapeutic treatment
Mental health providers for people with autism often function as a life coach.  Therapists often help an autistic person sift through the daily pressures and stresses that life brings and strategize ways to move forward that are overwhelming to an anxious autistic person.  Many autistic individuals face additional barriers in accessing mental health services due to the nature of their disability.  To reduce these barriers, it is suggested that clinicians try to reduce crowded environments, loud noise, bright lights, and long wait times or offer remote appointment services, which are often preferred for comfort and feelings of safety.  Education on autism and encouragement to respond with flexibility instead of rigid responses can reduce fear of stigma and increase participation from autistic individuals with anxiety.  Clinicians working with autistic populations need to be trauma-informed and respond with knowledge of how adverse childhood experiences common in autistic children can affect individuals with care not to re-traumatize them in treatment.  Many mental health therapies that work well in traditional populations such as cognitive behavioral therapy will often need to be adapted for use in autistic population to be functional and prevent increased anxiety to the client.  Clinicians should be aware of autism diagnostic criteria when treating seemingly non-autistic individuals with anxiety, especially women, who are underdiagnosed autistic, as anxiety is often a symptom of untreated autism.  There are autistic-specific accommodations that can be provided and strategies for self-help when the individual knows they are autistic that dramatically reduce anxiety.  Delays in identification of autism often lead to increased anxiety that is more difficult to treat (Roy, 2021). 

This paper would not be complete without discussing the debate about ABA, or applied behavioral therapy.  ABA is controversial and is generally reviled among autistic advocacy groups which describe it as dehumanizing and abusive.  I believe that elements of ABA can be utilized without maintaining the discrete trial and compliance components of the original ABA.  ABA can be used to help autistic individuals break up anxiety-producing tasks into smaller step-by-step routines and teach replacement behaviors for undesirable ones.  For ABA to be ethical, the autistic individual needs to be involved in goal creation and listened to if they experience distress in treatment.  Speech and occupational therapies are often used with autistic populations and can help reduce anxiety (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021).

Treating anxiety in autism required multi-modal care.  For example, while increased social media use among neurotypical teens has shown greater associations with depression and anxiety, when autistic teens engage in social media, if functions to reduce their overall anxiety.  Autistic teens with anxiety appear to use social networking sites to build community, connect with friends in authentic ways, and have fun.  This suggests autistic neurology is different in many ways from their neurotypical peers.  (Lunn, Cogdon, 2021).  Social-communication challenges are one of the contributing factors in anxiety among autistic individuals and treatment should focus not only on therapeutic interventions but also on helping the autistic individual find ways to involve themselves in a sense of community.  Participating in employment or even in support groups has been shown to help autistic individuals increase their social skills and decrease their anxiety.  Assisting individuals with interpersonal challenges and teaching social skills as they navigate the work and social realms will be important for their adaptation to being more involved in the community.  Being involved in the community contributes to higher emotional intelligence, and both community involvement and emotional intelligence lead to reduced anxiety and higher quality of life.  Particular care should be made to assist autistic individuals in periods of transition, which is often one of the most stressful times of life for autistics.  Both support groups and social skills groups have been found to help autistic adults with anxiety by establishing a sense of belonging, a place where they can be understood, and see reflections similar to themselves in others to reduce alienation (Flores, Delariarte, 2021).

Autistic brain differences are not well understood.  Traditional therapeutic methods for anxiety should be considered, but one treatment that has shown effectiveness in autistic populations is exercise.  Exercise often provides autistic individuals opportunities for community engagement, to be part of a group class, competitive sport, or hobby, and gives many structured time outside in the sun.  All of these factors are especially beneficial for autistic individuals.  In many exercise environments social interactions are either minimal, structured, or conversation topics can surround the exercise instead of personal topics.  This removes much of the stress of social interactions for autistic individuals.  Some have found that exercise reduces cognitive difficulties, which makes it easier to converse with others, which reduces anxiety.  We all know that exercise is beneficial, but for autistic folks, it can be important than for others! (Conboy, 2021).

One of the more important treatment needs for autistics with anxiety is crisis response care.  Individuals need quality of care options in crisis beyond calling 911 or going to an emergency room where staff have little to no training in how to work with autistic adults.  There need to be resources that autistic adults with anxiety can utilize to deal with mental health issues where they will get appropriate care.  This is especially needed for autistic individuals of color, who are often misunderstood and experience racial bias in health care from a majority White health care team.  Cultural competence and autism education are needed in our healthcare systems for effective care. (Drexel university, 2021).

Research gaps
Much research is needed as to effective treatments of anxiety for individuals with autism, adults with autism, and women with autism (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021).  While many autistic individuals are using psychotropic medications, little research has been conducted specifically on the use of prescriptions in autistic neurology and how they may deviate in effect from neurotypical populations.  It is likely that autistic individuals are overmedicated without gaining significant benefits.  While many SSRIs are used to treat anxiety in autistic populations, there is minimal and inconclusive research as to their efficacy.  More research is needed not only to find more effective prescription drugs to treat autistic anxiety, but also to determine why traditional medications have limited efficacy.  At this point we are left to conjecture about differing neurology requiring substantially different medical approaches, but there is not research explaining how or why (Deb, Roy, Lee, et. all, 2021).

More research is needed in treating autistic anxiety with cannabis, CBD, psylocibin, and MDMA.  Initial studies have found better responses from autistic individuals using micro-doses of these substances that have been shown from SSRIs and other FDA approved prescriptions that work well for neurotypical populations but appear to have less efficacy for autistic populations (National organization for reform of marijuana laws, 2021).
 
 
References:
Al-Oran, H., & Khuan, L. (2021). Predictors of parenting stress in parents of children diagnosed with autism spectrum disorder: A scoping review. The Egyptian Journal of Neurology, Psychiatry, and Neurosurgery, 57(1) doi:http://dx.doi.org/10.1186/s41983-021-00345-w

Conboy, M. (2021). How trail running helped ease anxiety from autism. Bow Valley Crag & Canyon Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/newspapers/how-trail-running-helped-ease-anxiety-autism/docview/2592770238/se-2?accountid=35183

Deb, S., Roy, M., Lee, R., Majid, M., Limbu, B., Santambrogio, J., . . . Bertelli, M. O. (2021). Randomized controlled trials of antidepressant and anti-anxiety medications for people with autism spectrum disorder: Systematic review and meta-analysis. BJPsych Open, 7(6) doi:http://dx.doi.org/10.1192/bjo.2021.1003

Drexel university (2021). National autism indicators report - high rates of mental health conditions and persistent disparities in care. 2021, Sep 01. Targeted News Service Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/wire-feeds/drexel-university-national-autism-indicators/docview/2567973257/se-2?accountid=35183

Flores, D. G., & Delariarte, C. F. (2021). Community participation as mediator of trait emotional intelligence and health-related quality of life of adults with high-functioning autism. North American Journal of Psychology, 23(3), 491-507. Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/scholarly-journals/community-participation-as-mediator-trait/docview/2577808179/se-2?accountid=35183

Grandin, T. (2014). The autistic brain: helping different kinds of minds succeed.  Boston, New York: Mariner Books, Houghton Mifflin Harcourt

Lunn, S., & Cogdon, K. (2021). Autistic teens ‘at ease’ on internet. The Australian (Online) Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/newspapers/autistic-teens-at-ease-on-internet/docview/2595963608/se-2?accountid=35183

Moseley, R. L., Turner-Cobb, J. M., Spahr, C. M., Shields, G. S., & Slavich, G. M. (2021). Lifetime and perceived stress, social support, loneliness, and health in autistic adults. Health Psychology, 40(8), 556–568. https://doi-org.csu.idm.oclc.org/10.1037/hea0001108.supp (Supplemental)

National organization for reform of marijuana laws (2021). Survey - more than one in five U.S. caregivers report providing CBD to treat autistic symptoms. 2021, Oct 15. Targeted News Service Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/wire-feeds/national-organization-reform-marijuana-laws/docview/2582100040/se-2?accountid=35183

Ponieman, N. (2021). Magic mushrooms and ecstasy: New treatment for autism spectrum disorders? Benzinga Newswires Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/wire-feeds/magic-mushrooms-ecstasy-new-treatment-autism/docview/2590349567/se-2?accountid=35183

Roy, A. (2021). How can psychiatrists make mental health services more accessible for people with autism? BJPsych Open, 7(6) doi:http://dx.doi.org/10.1192/bjo.2021.1036
Villalpando, N. (2021). Is it autism? mental illness? both? how to navigate double diagnosis. Austin American Statesman Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/newspapers/is-autism-mental-illness-both-how-navigate-double/docview/2581626315/se-2?accountid=35183

Wiltjer, R., Gentry Wilkerson, R., Winograd, S. M., & Leetch, A. N. (2021). Autism spectrum disorder in the emergency department. Emergency Medicine Reports, 42(15) Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/scholarly-journals/autism-spectrum-disorder-emergency-department/docview/2554269069/se-2?accountid=35183

This was a research paper that I got to write for my doctorate program!

Cognition, emotion, and motivation in gender diversity
 
Lisa R. Macafee
California Southern University
PSY 8724 Cognition, Emotion and Motivation
Dr. Debra Pearce
August 15, 2021
 
Cognition, emotion, and motivation in gender diversity
This paper discusses how cognition, emotion, and motivation affect the construction of gender.  This paper will discuss the personal, environmental, and sociocultural components involved with gender diversity.  Gender diversity includes any gender identity outside of cisgender (identifying as the gender assigned at birth).  Transgender identities, often called “trans” for short, include anyone who does not identify 100% with the gender assigned at birth and can include trans men, trans women, non-binary, gender fluid, 3rd gender, agender, gender non-conforming, and pangender identities.  Approximately 0.6% of adults and 2.7% of adolescents in the United States identify under the transgender umbrella, with younger individuals coming forward and an increasing number of non-binary individuals (Bowman, Casey, McAloon, Wootton, 2021).  Trans and gender diverse are used interchangeably in this paper.  I am writing about gender diversity because I identify as non-binary and work with the LGBTQIA+ population to provide supports for the community.

Cognition around gender
Thankfully, people are broadening their understandings of gender and are beginning to see sex and gender more broadly and less on the binary.  Cisgender heterosexual individuals have the least cognitive understanding of gender and sex as fluid or complex and tend to define more based on biological terms, while transgender and gender diverse individuals understand gender in more complex terms in sociocultural context.  Younger individuals perceive gender more as a spectrum when compared to older individuals who think more in binary terms that are explicitly tied to the sexual parts an individual possesses.  The more power and privilege a group has, the more likely they are to hold in place discriminatory systems that benefit them.  For example, White people and men are both more likely to hold essentialist beliefs about sex and gender and are more likely to attribute gendered traits to genetics.  Groups who have been disenfranchised are more likely to question the same hierarchies and critically engage with them, leading to a more nuanced understanding of the hierarchies of gender and sex.  Minoritized people are more likely to think about sex and gender in inclusive terms, such as: sex and gender may not match, gender assigned at birth may be different from gender identity, individuals may move between genders, be somewhere in between, or be no gender.  Thinking more inclusively better ensures that others are not harmed by the individual’s definitions and excluded from their conceptions and resists biological essentialism (Schudson, Beischel, van Anders, 2019).

There are many gendered expectations for those who are gender diverse that can be confusing at times.  For myself, I remember clearly being told in high school that I was a “dude with ovaries” and that I should just admit that I was a lesbian, because clearly a person assigned female at birth (AFAB) who was gender non-conforming must be gay.  The conflation of gender and sexuality is rampant both within queer communities and cisgender-straight communities.  People often see atypical gender presentations such as a feminine man or masculine woman and assume they are gay.  This assumption is sometimes accurate, but often it is not.  Gender and sexuality are not tied together, but our socialization tells us it is.  Trans individuals are expected to be straight and hyper-gendered.  Being trans and gay confuses people who do not experience the gender dysphoria present in many trans individuals pre-transition.  Many trans individuals continue to experience gender dysphoria during and after transition.  These individuals may have adopted the idea that they need to transition all the way to the opposite binary gender assigned at birth and that an in-between gender identity is somehow unintelligible.  There is pressure that to be truly trans, one must conform to society’s expectations of “male” and “female”.  To avoid criticism, individuals must adopt a cisgender mask to be palatable and not confuse others.  For trans folk, “passing” is a privilege and difficulty.  Dealing with microaggressions and aggression causes gender diverse folk to constantly question themselves; ‘Should I try to pass more to avoid harassment?’;  ‘Should I live “out” more to advocate for trans rights?’;  ‘Is it my responsibility to educate every person who misgenders me or tries to convince me I’d be happier as a cisgender person?’  Existence is an act of rebellion for many of us gender benders, and it is exhausting. (Jones, 2021).

Many trans and non-binary individuals experience some degree of gender dysphoria.  Gender dysphoria is experienced when there is an incongruence between the gender assigned at birth and the gender identity an individual holds that causes them distress.  Individuals experiencing gender dysphoria may feel uncertainty, stigma, guilt, and body dissatisfaction on their journey to living more authentically as their authentic gender instead of performing as the gender they were raised to be.  The feeling that the experience of gender a person has is wrong is often accompanied by increased levels of anxiety, depression, self-harm, and suicidality.  Many individuals are able to resolve the gender incongruence that causes distress by gender-affirming practices such as social transition, hormone blockers for adolescents, hormone therapy, and surgery.  Others may also need therapy to resolve the internalized gender issues.  When a person has been raised from infancy to be a certain gender with certain gendered personality traits and they do not feel that is an authentic way of being for them, it is often not simply a light switch to be turned on and off from one gender presentation to the other, it requires a great deal of processing to be able to exist in a  new presentation to the world from the previous indoctrinated presentation.  I have been in my gender journey for only a few years as before that I simply attempted to be what I was told I should be.  I have always known I was different from others, and a “tomboy”, but didn’t have the vocabulary to process what that might mean for me until recently (Bowman, Casey, McAloon, Wootton, 2021).

Emotion and gender
One of the emotional factors that most people who are not gender diverse don’t understand is the constant presence of fear.  Fear of being discovered, fear of sharing one’s identity with someone and being rejected for it, fear of persecution, fear of the unknown fear of oneself.  One of the most harmful fears is the fear of getting effective and appropriate medical and psychological care.  Many trans individuals navigate shame and social rejection just for living as who they are.  Seeking out mental health support often results in a gender dysphoria diagnosis and pathologisation leading to pressure to live as the gender assigned at birth or 100% the opposite gender assigned at birth instead of mental health support for the depression and anxiety that is often the result of being different.  Not enough therapists are adequately trained to work with gender diverse clients (Jones, 2021).

Many people, both gender diverse and cisgender, have a great deal of internalized cis-sexism; the unconscious belief that being cisgender is superior to being transgender.  Leading to this outcome are the heightened levels of physical, verbal, and sexual assault that transgender and gender non-conforming (TGNC) individuals experience compared to their cisgender peers.  TGNC folks also experience higher levels of mental and physical health problems and higher levels of substance abuse as a coping methos compared to their cisgender peers.  This is understandable considering the amount of minority stress and cis-normative frameworks that TGNC people experience.  When TGNC people attempt to educate those around them who microaggress against them by imposing cis-normative expectations, this often leaves the TGNC individual exhausted and anxious after being vulnerable with people who often have hostile and negative responses.  I have experienced this so many times now that instead of calling someone out in the moment, I have begun offering LGBTQIA+ Foundations trainings to faculty, staff, and students at my campuses so those who do want to be better can.  It is my intention by speaking up loudly and clearly and getting administrative and mainstream support across campus that the culture of the institutions that I work in will change enough to better support TGNC students and staff and suppress anti-trans hostility (Ehlinger, Folger, Cronce, 2021). 

Non-binary individuals often feel pressure from the LGBTQIA+ and straight communities to try to “pass” as male or female, being neither often makes people uncomfortable.  I identify as non-binary and the experience of having my very existence making people uncomfortable makes me feel anxious and pressure to conform, it is difficult not to internalize that making people uncomfortable is problematic on my part, and not their responsibility to accept more diverse people.  I am left with a sense of “otherness” that I am unable to shake, a feeling that I will never be part of any group, because I do not fit into their molds.  I realize that as a White person, I experience a greater privilege than TGNC people of color.  It becomes clear that TGNC people of color are some of the most disproportionately impacted people in the Unites States because they face cis-sexism in their cultural communities and racism in the queer communities.  The feelings of alienation and otherness from most communities leaves TGNC individuals at high risk for substance abuse and self-harm, increasingly so with added marginalized statuses such as race, ethnicity, immigration status, socio-economic status, (dis)ability, and sexual minority status (Ehlinger, Folger, Cronce, 2021).

Motivation and gender diversity
For some to get gender treatment, they must conform to binary gender stereotypes and be transgender to qualify for physical and mental health services.  This pressure to fit into a false binary existence to get care causes motivation to be hyper-masculine or hyper-feminine, which can cause its own gender dysphoria (Jones, 2021).  For individuals who are delayed in their gender and sexuality exploration and identity formation, they often experience negative mental health impacts (Hawke, Hayes, Darnay, Henderson, 2021). I am 39 years old and only started to think about my own gender four years ago when I attended a presentation that discussed a term I had not heard before, transgender and gender non-conforming (TGNC).  This identity label changed my life.  I had lived with a baseline level of anxiety and depression and lack of belonging my entire life, and this term just explained why.  While I do not identify as a female, as I was assigned at birth, neither do I identify as male.  I identify as outside of those repressive roles and cannot fathom how others truly feel safe in those identity boxes.  

The moment I decided it was okay to be atypical in my gender presentation approximately two years ago was when my confidence started to scale upwards, and my motivation increased.  I collected others involved in gender justice, organized groups, gave trainings, and started multiple services at the colleges I work at for students like me (and those not like me, but struggling with similar fears and anxieties).  I recognize the suffering in others and am more able to take action to lessen such suffering now that I have accepted myself.  It’s only been four years since I started to think about how the gender role expectations that I had tried to live inside of for my adult life were stifling and depressing.  In those four years my career has blossomed as others see drive and confidence instead of fear and nervousness.

Personal Factors
Many gender diverse individuals end up losing their positionality in their family of origin as certain members are too rigid in their beliefs or strict in whom they accept to allow a non-binary family member a proverbial seat at the table.  Gender diverse individuals often lose financial supports, familial supports, and socio-emotional supports if they dare to express themselves as who they are.  The real or perceived fear of losing these supports may cause gender diverse individuals to attempt to conform to cisgender expectations to avoid losing social and financial assets (Jones, 2021). 

There has been talk in conservative media outlets claiming that 80% of gender expansive children will grow up to be cisgender in adulthood.  The flawed research studies that promote this idea warn parents of trans children not to provide life-saving gender-affirming treatments to youth because their experience of being transgender is a phase.  There are many personal factors that account for individuals who did receive gender-affirming treatments and regret it such as a realization that they are non-binary instead of trans-binary, the cost of living out and trans was too much for the individual to bear, and discrimination, among only a few of the reasons people de-transition that are not “a phase”.  However, more recent research suggests that 96% of all trans youth continue to identify as gender diverse into adulthood.  Gender-affirming social transition such as name and pronoun change, clothing, hair, and demeanor, have shown to save lives and increase general well-being for gender diverse individuals.  Those who socially or medically transition are more likely to have personal factors of family and peer support, be White, and have a high socio-economic status (Ashley, 2021).

An additional personal factor that influences an individual’s desire to present as gender non-conforming for those assigned female at birth (AFAB) is internalized sexism.  Many AFAB individuals have internalized so much negativity and associations of weakness about femininity that they cannot stand to associate with it.  For some, to be female is to be vulnerable, more emotional, less successful, more domestic, and associated with being a caring nurturer instead of an independent provider.  These individuals may present as “butch” lesbians, trans men, or other identities.  They can bring a high degree of sexism to the queer community and discriminate against feminine lesbians, trans women, feminine gay men, and others, often their own partners (Ivey, 2017).

Environmental Influences
Environmentally speaking, there is a serious safety concern when out in society as a gender diverse person.  When someone doesn’t fit into the expected binary categories, people who are uncomfortable with non-binary genders often react with hostility.  This can range from micro-aggressions to physical assault.  I was harassed and called names daily because I did not conform to gender expectations and took to carrying a knife with me to school because I did not feel safe.  Some trans folk are told they make others uncomfortable and are barred from working with vulnerable populations such as foster youth and domestic violence survivors.  This is especially unfortunate because a high percentage of foster youth are gender non-conforming, which is often why they are in foster care in the first place (Jones, 2021). 

There is an upsetting amount of cissexism and racism in queer and trans places that further marginalizes gender diverse people of color.  Queer communities were mostly built around the work of White gay men, and many queer spaces are not as welcoming to gender minorities as they are to sexual minorities.  The racialization of trans individuals of color impacts their experiences and differentiates them from their White trans peers, often making it difficult to find communities where they feel they belong.  Being a trans individual is marginalizing and being a trans individual of color is exponentially marginalizing due to the increase in factors that may bring discrimination from different groups.  Trans people of color are some of the most marginalized people in the United States and benefit from being in environments that are actively anti-racist along with anti-cissexism and White allies that do their homework to learn about the disproportionate impacts on queer people of color (Simms, Nicolazzo, Jones, 2021).

For individuals whose gender does not conform to what they were assigned at birth, typically referred to under the transgender umbrella, the rates of PTSD are significantly higher than the general population with trans rates of PTSD between 17.5%- 45% compared to 5%-10% for the general population.  This heightened rate of PTSD is likely due to the increased risk of victimization and trauma that trans people experience living in a hostile social environment of discrimination, rejection, harassment, non-affirmation, internalized transphobia, expected rejection, and concealment.  When someone lives outside their gender expectations and they experience anti-transgender bias and non-affirmation, this is traumatizing to the individual who is not only feeling rejected and as though they don’t have a right to exist, but also because the more negativity around their gender they experience, the more they are likely to internalize transphobia and negative feelings around their gender themselves.  The more the individual has internalized transphobia, the less regulatory functions their brain is able to use to protect their self from the effects of trauma and the more severe their PTSD symptoms tend to be.  It is crucially important that trans individuals find environments that validate and celebrate their gender identity for them to reduce their internalized transphobia (Barr, Snyder, Adelson, Budge, 2021).

Sociocultural Components
Being gender diverse in a culture that only approves of the cisgender narrative creates mental stress.  The two typically accepted cultural spaces for gender diverse individuals are to put on a cisgender mask and bury their authentic gender diverse self or transition to the opposite binary gender and be accepted in some queer communities but live in a marginalized and dangerous space.  For people choosing a binary trans experience, they are often exposed to the word by their physical characteristics as transgender.  For those trans folks who are “passing” (viewed as cisgender the gender they present as), when people learn of their transgender identities, some individuals may feel as though they have been lied to, which produces agitation and resentment.  Few spaces allow for identities in between the binary gender expectations (Jones, 2021). 
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Many queer activists believe that trans folk should be “out” to the world as trans to propel the cultural acceptance of trans identities, but living publicly as a gender diverse individual brings safety risks and discrimination, exponentially so if the trans individual lives in intersecting identities of racial, socioeconomic, or (dis)ability status.  Many gender diverse individuals feel pressure to represent transgender identities in the world while at the same time negotiating their physical safety (Jones, 2021). 

Conclusion
I am completing my PsyD to provide gender-affirming therapy services to trans and gender diverse individuals.  I know from experience how frustrating it was when I asked my therapist about non-binary and she blew me off.  I know how discouraging it was when I asked my health care provider about being intersex and having her tell me that “if you were a hermaphrodite, you’d have a penis”.  Please note the two very different words used of “intersex” and “hermaphrodite” (an offensive and dated term).  The mental and physical health communities are grossly undereducated about queer issues and uncomfortable providers often come off hostile to individuals who are just trying to survive.  I know that when people feel supported and validated in their intersecting identities, they have higher senses of well-being, are more successful, and exhibit less mental health struggles.  I want to be part of the solution.

References:
Ashley, F. (2021). The clinical irrelevance of “desistance” research for transgender and gender creative youth. Psychology of Sexual Orientation and Gender Diversity. https://doi-org.csu.idm.oclc.org/10.1037/sgd0000504

Barr, S. M., Snyder, K. E., Adelson, J. L., & Budge, S. L. (2021). Posttraumatic stress in the trans community: The roles of anti-transgender bias, non-affirmation, and internalized transphobia. Psychology of Sexual Orientation and Gender Diversity. https://doi-org.csu.idm.oclc.org/10.1037/sgd0000500.supp (Supplemental)

Bowman, S. J., Casey, L. J., McAloon, J., & Wootton, B. M. (2021). Assessing gender dysphoria: A systematic review of patient-reported outcome measures. Psychology of Sexual Orientation and Gender Diversity. https://doi-org.csu.idm.oclc.org/10.1037/sgd0000486

Ehlinger, P. P., Folger, A., & Cronce, J. M. (2021). A qualitative analysis of transgender and gender nonconforming college students’ experiences of gender-based discrimination and intersections with alcohol use. Psychology of Addictive Behaviors. https://doi-org.csu.idm.oclc.org/10.1037/adb0000752

Hawke, L. D., Hayes, E., Darnay, K., & Henderson, J. (2021). Mental health among transgender and gender diverse youth: An exploration of effects during the COVID-19 pandemic. Psychology of Sexual Orientation and Gender Diversity, 8(2), 180–187. https://doi-org.csu.idm.oclc.org/10.1037/sgd0000467
Ivey, G. (2017). Gender mobility in the countertransference: An autoethnographic investigation. Counselling & Psychotherapy Research, 17(1), 42–52. https://doi-org.csu.idm.oclc.org/10.1002/capr.12101

Jones, D. B. (2021). De-colonising My Trans Body: Fanon and the masks I have worn. Existential Analysis: Journal of the Society for Existential Analysis, 32(2), 322–332.
Schudson, Z. C., Beischel, W. J., & van Anders, S. M. (2019). Individual variation in gender/sex category definitions. Psychology of Sexual Orientation and Gender Diversity, 6(4), 448–460. https://doi-org.csu.idm.oclc.org/10.1037/sgd0000346

Simms, S., Nicolazzo, Z., & Jones, A. (2021). Don’t say sorry, do better: Trans students of color, disidentification, and internet futures. Journal of Diversity in Higher Education. https://doi-org.csu.idm.oclc.org/10.1037/dhe0000337