Health Impacts FOR QUEER AUTISTIC ADULTS

Disproportionate Health Impacts For Queer Autistic Adults

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).
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Disproportionate Physical Health Impacts of Being Queer or Transgender And Autistic
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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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