VIGNETTES From Autism
This is where I post most of my doctoral research on autism and gender non-conformity. Also random thoughts and theories of my own. I try to include resource citations with all articles.
 Six Months Free of Cymbalta and I can Walk Again! (a miracle instead of medical competence) by Lisa Macafee I am a little over six months out from being progressively poisoned over the course of five years by Cymbalta. That sounds dramatic. Let me try again. In 2025, I have been cleansing my body after my doctors destroyed my health over five years with Cymbalta. No? Still too dramatic? Hmmm… It’s a hard thing to not be dramatic about. For five years, my doctors had me on Cymbalta for pain related to fibromyalgia. I don’t think it helped my pain at all, as I’ve not had more pain now that I’m off it. What it did do was progressively weaken my entire Musculo-skeletal system, causing my body to become so fatigued I needed to use a wheelchair for any standing or walking more than a few minutes in length. It’s a tricky one because the effects built up over time – it’s not like I started taking it and felt terrible – it didn’t seem to have any immediate effect. But over five years? Hoo-boy. Cymbalta caused me not to be able sleep through the night – but they had more pills with more side effects for that. It also contributed to dry mouth, leading to two gum graft surgeries for me to keep my teeth. I could hardly parent, and I’m so grateful to Ryan for really sticking with that “in sickness or in health” bit or I likely would have lost my marriage, because I was not fun or very helpful in this time. Coming home after work I just needed to rest. For folks who have not experienced chronic fatigue at this level, I’m sure it sounds like exaggeration, but it felt like my body would deflate and be unable to sit up or stand, think, reason, or complete even the most basic of tasks. For anyone unfamiliar, please see the spoon theory, which describes how tasks most people even don’t consider become challenges and barriers for those of us with chronic illnesses, especially on bad days. Working 30 hours a week was way too much, and I’m grateful my boss let me extend my contract so I could take every other Wednesday off to rest and go to doctor’s appointments. Of which I went to many. Without this accommodation, I likely would have lost my job. As it was, I still called out multiple days a month. I saw so many doctors desperate to find out what had gone wrong with my life and none of them thought to look at the side effects for the drugs they prescribed me. None. Of. Them. That’s not okay. I saw at least five different general practitioners, a rheumatologist, a dermatologist, two oral surgeons, a neurologist, and a psychologist. None of them figured out they were destroying my life with Cymbalta (again, pardon the dramatics, but that’s how it feels). My doctors never did figure out they were the ones making me sick. I had to figure it out myself. I am so grateful I never let go of the feeling that something was wrong and didn’t agree with my doctors that this was just my life now. I read about menopause, hormone replacement therapy, auto-immune diseases, mast-cell disorder, and more. When nothing fit, I went through every medication and supplement’s side effects and started systematically taking myself off each one. I took myself off an anti-depressant, an anti-anxiety, a sleep medication, a bunch of supplements, and Cymbalta was the one. After getting off Cymbalta, I no longer need the other prescriptions I was on, because they were all to combat side-effects of Cymbalta! Six months off the medication? I went to Legoland with my kids on Friday and didn’t use a mobility device because I didn’t need one. I walked around all day and we had so much fun. Granted, the day after, I crashed real hard and needed to rest, but this still is a huge win. I kept looking at my partner and exclaiming how overjoyed I was that I could walk. It’s something I’ll never take for granted again. 
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The Search for Health (Hint: it’s not in Cymbalta)
by Lisa Macafee I recently went a bit mad searching for any possible thing that could be impacting my health. I go regularly to my doctor, a specialist in chronic health conditions, beg for help to achieve better health, and am regularly told that there was nothing to do. I trusted her to know what was best, which was foolish on my part. Eventually, I researched all the medications I am on… which are many… for possible side effects that could be making me feel so sick. I found that Cymbalta, a drug prescribed for fibromyalgia, could possibly be causing harm. Cymbalta is listed as having possible side effects of difficulty sleeping, headaches, feeling dizzy, blurred vision, heart palpitations, constipation, dry mouth, and drowsiness or fatigue, and serious possible side effects of long-lasting weakness or bruises that appear without a reason. 
I had all of these. All of them. Why, you may ask, did my doctor never consider that this medication might be a problem if I came in every couple months complaining of severe fatigue, dry mouth, dizziness, etc.
I have had two gum grafts in the last two years, which my dentist could not figure out, but were needed partially due to having a dry mouth. How long have I even been on Cymbalta? Years now. Why did I start it? I can’t remember… When I finally asked to be taken off Cymbalta, my doctor did not agree with the decision, but offered a plan if I insisted. I insisted, and felt better the first day off the medication, although the withdrawal heart palpitations were rough. It’s only been two weeks, but I already feel better than I have in years. Years! Few will appreciate this, but I walked across campus yesterday for a holiday event, walked back, and was able to finish my shift, pick up my son, and continue to function as mom all night. This was, sadly, revolutionary for me. While I am increasingly furious with my doctor, I have hope for the first time in ages that I might recover. I may be able to live a less-disabled life. Hope is a powerful thing. As AJR says, “I ain't happy yet, but I'm Way Less Sad.” What does all the Research on Gender Non-Conformity in Autistics Mean? by Lisa Macafee This research was conducted to explore the relationship between gender diversity and autism through a neurodiversity lens, emphasizing autism as a natural biological divergence which should not be stigmatized (Fung et al., 2022). The problem addressed herein is the disproportionate negative mental and physical health outcomes for autistic gender diverse adults, which are more than double those of the typical population (Hall, et al., 2020; Nobili, et al., 2018) and lack of effective care strategies (Strang, et al., 2019; Zener, 2019). The purpose was to elucidate the experiences of autistic transgender adults, illuminate the issues they experience, and explore options for treatment (Nobili, et al., 2018; Walsh, et al., 2018). 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? Approximately 15% of autistic adults identify under the transgender umbrella (Maroney & Horne, 2022; Walsh, et al., 2018) and there are biological markers influencing these identities, such as high testosterone rates among autism (Kung, 2020; Nobili, et al., 2018). This systematic literature review is situated in neurodiversity framework which asserts autistic people are simply a form of natural biological diversity in the human genome that have both strengths and weaknesses, like any other variation, and should not be viewed as problematic in itself (Enoka, 2022; Fung et al., 2022; Legault et al., 2021) and explores culturally sensitive and effective treatment options for gender diverse autistic adults, as misinformation or misunderstandings of autism or gender can be harmful (Maroney & Horne, 2022; Strang, et al., 2019). The systematic literature review conducted contains the results from thirty peer-reviewed research articles using methodology of the PRISMA model (Tawfik et al., 2019).  Findings Findings for research question one on gender diversity and autism seem to be congruent between the findings described in Chapter Two and the results in Chapter Four. In the United States, only about 0.6% of people identify as transgender (Bowman et al., 2022) and autistic people have an overrepresentation of transgender identities (Kung, 2020; Strang et al., 2021), with roughly 11% of gender divergent people being autistic (Strang et al., 2023). While AFAB autistics have the highest rate of transgender identity at 21.6% (Walsh et al., 2018), autistic people in general report transgender identities roughly 15% of the time (Kallitsounaki & Williams, 2022; Maroney & Horne, 2022; Strang et al., 2021), about eight to eleven times more often as neurotypical people (Janssen et al., 2016; Pinna et al., 2022; Strang et al, 2014). While it was found in the literature review is AFAB autistics tend to be more gender flexible (Kung, 2020), with 21.6% identifying as transgender or non-binary (Walsh et al., 2018) compared to 15% of the general autistic population (Strang et al., 2021), results from Chapter Four indicate AFAB and AMAB autistics both experience significant rates of gender diversity (Strang et al., 2023; Thrower et al., 2019) and transgender people are disproportionately autistic (Maroney & Horne, 2022). Multiple studies demonstrate AFAB transgender and non-binary people demonstrate the highest rates of autistic traits (Kallitsounaki & Williams, 2022; Pinna et al., 2022) with 30%-45% of transgender AFAB people having autistic traits (Jones et al., 2011; Nobili et al., 2018) while other studies show AMAB having higher rates of autistic traits at 31.2% versus 22.2% of AFAB (Heylens et al., 2018). It is speculated autistic adults experience higher rates of gender diversity for a number of reasons, but the most commonly cited example is autistic people do not internalize social norms and expectations in the same way as neurotypical people, do not feel pressure to conform to unspoken norms in the same way, resist social conditioning, and are more likely to embrace atypical identities (Cooper et al., 2022; Ehrensaft, 2018). Autistic people can also hyper-fixate on gender as a special interest in a way neurotypical people do not experience gender, which can make treatment complicated (Cooper et al., 2022; Davies, 2023) and the rigidity and intolerance for ambiguity many autistic people experience can make the intricacies of gender identity difficult to discuss (Saffie & Bauerle, 2023). AFAB autistics may relate with more ease to male peers as compared to women, where communication barriers can cause unease and prompt gender non-conformity (Jones et al., 2011). Research question two findings indicate, in addition to social aspects of gender, there are significant factors of physical influence on autistics towards gender convergence (Gasser et al. 2021; Kung, 2020). The extreme male brain theory of autism was developed in response to noting correlating levels of androgens present in fetal development of autistic children and the overrepresentation of testosterone-related disorders in both mothers of autistic children and AFAB autistics (Gasser et al., 2022; McKenna et al., 2021; Shah & Bobade, 2018). Fetal testosterone correlates with the development of autism and AFAB autistics have sex-linked traits similar to AMAB people, such as handedness patterns (Jones et al., 2011; Kirkovski et al., 2013). It is also thought AFAB autistics may be more sensitive to androgen exposure, autistic AFAB have significant levels of bioactive testosterone as compared to neurotypical AFAB, while AMAB autistics have similar rates to neurotypical AMAB (Kirkovski et al., 2013). Interestingly, atypical androgen exposure does result in correlating masculinization of AFAB autistics, but it results in correlating feminization of AMAB autistics, with AFAB autistic faces and digit ratios being more masculine and AMAB more feminine (McKenna et al., 2021). Sexual dimorphisms can be expected in autistic people (Kirkovski et al., 2013), leading some to describe autism as a gender defiant disorder due to its androgynous correlations and the function hormonal levels have on gender development, which are comparable to the chromosomal genetic sex impact (McKenna et al., 2021). Additionally, a high birth weight is correlated with both gender non-conformity and autism (Heylens et al., 2018; Tankersley, 2021). Further research is needed to determine any causal determinates of gender diversity among autistic people. It is not clear if autistic people experience the development of gender identity in similar ways to neurotypical people or if very different mechanisms are at work (Kallitsounaki & Williams, 2022). Findings for research question three indicate there is a focus on gender and sexuality to be viewed as spectrums found in both Chapters Two and Four (Ehrensaft, 2018; Kung, 2020). Autistic people seem to have more flexibility when it comes to sexuality and identity, with roughly 30% of autistic adults identifying with an identity on the asexual spectrum (Attanasio et al., 2021). Having more flexibility when thinking on the individual’s own gender can result in similar flexibility in sexual orientation, with autistic people stating their sexuality is directly related to their gender experience (George & Stokes, 2018; Tankersley, 2021). Research on gender identities in the past five years encourages practitioners to view gender as bimodal and continuous instead of binary and unchanging (McKenna et al., 2021). Treatment and support of autistic adults should take transgender and non-binary identities into consideration as these two identities are so commonly linked are associated with greater physical and mental healthcare needs (Davies, 2023; Hall et al., 2022; Kallitsounaki & Williams, 2022). Social supports can be especially impactful for transgender autistic people, who may benefit from social groups of peers, community interaction, gender divergent autistic role models, and family connection allowing individuals to see a path forward in their identity (Mezzalira, 2022; Strang et al., 2021; Tankersley, 2021). The issue of gender convergence may be something to investigate for practitioners working with autistic people as gender identity may be conflated with autistic people being physically more masculinized or feminized, and these identities and realities should be differentiated before jumping to conclusions or treatment avenues (Jones et al., 2011). It will be crucial to separate gender identity disorder from any compulsions or obsessive thinking dominating autistic thought at times (Saffie & Bauerle, 2023). Practitioners would be advised to choose their words with care so as to prevent alienation of clients and support mental well-being (Davies, 2023; Gomes et al., 2021; Pinna et al., 2022). Approximately 80% of transgender people pursue gender transition and it is directly linked to well-being but does not have to be medical for results to be shown, as name choice and clothing can be helpful (Gomes et al., 2021) with 77% of transgender adults desiring therapy throughout their gender transition to work through intense challenges to their mental health (Holt et al., 2021). It should not be assumed services developed for gay and lesbian clients are applicable to autistic transgender client needs, and services will likely need to be adapted appropriately to both transgender and autistic demands (Walker, 2021). Regardless of services being discussed, practitioners should differentiate between biological sex and gender identity, especially when working with autistic people (Libsack, 2021) and reducing internalized stigma while working to improve self-acceptance can help promote a better self-concept and positive quality of life (Mezzalira, 2022). Autistic people have rights to gender affirming care, just as neurotypical people do, and receiving care may be more impactful on mental health due to the intersectional stigma of being gender divergent and autistic (Maroney & Horne, 2022; Mezzalira, 2022; Thrower et al., 2019). This literature review has limitations in research as it is still difficult to gauge the rates and experiences of non-binary identities in autism research as some researchers only use binary gender markers of male and female and do not allow for participants to enter their gender identity in the research collection (Allely, 2018; Strang et al., 2023). Research including transgender identities, where gender is not the focus of the research may use phrasing and language which is not inclusive and may cause underreporting of gender divergent identities among literal-minded autistics (Attanasio et al., 2021). For example, the literal meaning of “trans” is from Latin, meaning “journey,” and if an autistic person identifies as non-binary, they may not feel appropriate to list their gender as “trans” because they are not journeying to the opposite binary gender identity, but rather not partaking of gender binaries at all (Attanasio et al., 2021).  Implications for Professional Practice There are several areas wherein autistic gender diverse clients are being underserved and a number of ways in which practitioners could be more inclusive and accessible for this population. One autistic and non-binary AFAB person asked their healthcare provider about the possibility of doing a chromosome test for intersex identity and it was stated because they did not have a penis, they were not a hermaphrodite (Macafee, 2024). The word “hermaphrodite” itself is an offensive term to most intersex people and is not current terminology to be used in the medical field either (Walker, 2021). The lack of understanding on the part of the practitioner caused the individual to never go back to the provider again and to never repeat their request to another provider (Macafee, 2024). The stigma autistic people in particular feel in the health care field is already problematic and causes communication barriers to care, denial of care, and avoidance of seeking care (Libsack, 2021). Adding doubly marginalized identities of autistic and gender divergent makes seeking care increasingly difficult, the fear of persecution or unkind treatment makes it a daunting process (Holt et al., 2021; Kallitsounaki & Williams, 2022; Pinna et al., 2022). One of the first and most basic areas for practitioners to improve upon is learning more about gender diversity, especially as related to autism (Ehrensaft, 2018; Strang et al, 2014) and autistic sexuality being more likely to identify as LGB or asexual (Attanasio et al., 2021; George & Stokes, 2018). Gender for many autistic people is a fluid concept which can be expressed and experienced differently (Ehrensaft, 2018; Heylens et al., 2018) and may impact development of sexuality (George & Stokes, 2018; Tankersley, 2021). Additionally, autistic biology trends towards androgynous features, with AMAB autistics having more feminine physical features than typical AMAB people and AFAB autistics having more masculine features (Jones et al., 2011; McKenna et al., 2021). Practitioners working with autistic people should expect there may be gender non-conformity or sexual dimorphisms (Kirkovski et al., 2013; Tankersley, 2021). Practitioners are advised to differentiate between autistic people’s gender identity and gender assigned at birth (Libsack, 2021; Strang et al., 2023), know approximately 15% of autistic people identify as transgender (Lim et al., 2022; Maroney & Horne, 2022), with AFAB autistics being more likely to identify as transgender compared to AMAB (Nobili et al., 2018). Practitioners may also work to better understand the impact of hormonal differences present in a number of autistic people which have similar effects on development of gender as chromosomes and gender assigned at birth (McKenna et al., 2021). Many practitioners have been trained in LGBTQ+ competencies which do not provide sufficient information on transgender identities and appropriate care and may result in stigmatizing language being used which could turn autistic people away from receiving care (Holt et al., 2021; Pinna et al., 2022; Walker, 2021), such as describing an autistic person’s transgender identity as autistic obsession instead of taking the clients gender dysphoria seriously (Maroney & Horne, 2022; Saffie & Bauerle, 2023). An autism diagnosis should in no way bar someone from receiving gender affirming care, as withholding such care is correlated with negative mental health outcomes (Thrower et al., 2019). It is important for practitioners to be aware of the language they use, current preferred terminology (Gomes et al., 2021; Pinna et al., 2022), and be aware of how beneficial social transitioning of gender can be for individuals experiencing gender dysphoria, whether they choose to physically transition or not (Bowman et al., 2022; Gomes et al., 2021; Strang et al., 2021). Through social transition, it is possible for autistic transgender people to experience “gender euphoria,” wherein the person feels comfort and joy in the expression of their gender when aligned with their gender identity (Strang et al., 2023). Social supports, such as autistic and transgender role models, community engagement, family sense of belonging, and autistic peers support the development of a healthy sense of self and are linked to improved mental health (Mezzalira, 2022; Strang et al., 2021). While in therapy, practitioners should be aware of autistic people’s need for more time in therapy to process through feelings and trauma and work to develop and understand their identities (Cooper et al., 2022) due to both increased difficulties communicating effectively and recognizing emotions (Kallitsounaki & Williams, 2022). Practitioners working with autistic clients may wish to explore gender identity with autistic clients (Tankersley, 2021). Autistic people are more likely to experience physical health problems related to central sensitivity syndromes and hormone imbalances (Gasser et al. 2021; Shah & Bobade, 2018). As such, pain should be discussed and managed when practitioners are meeting with autistic clients (Davies, 2023), especially among AFAB autistics among whom 76% report chronic pain (Walker, 2021) and are more likely to have conditions like PCOS, dysmenorrhea, ovarian cancer, and uterine cancer associated with elevated rates of androgens (Gasser et al., 2022; Kirkovski et al., 2013).  Recommendations for Research While there has been an increase of research published in the last ten years on transgender issues and on autistic issues, rarely has the intersection of transgender autistic people been the focus of research. Even in studies where 11% of AFAB autistics reported a transgender identity, researchers fail to remark upon details such as this at all, begging the question of how a finding such as this is not worth noting, or if it may be researcher bias lending towards not remarking upon these findings (Allely, 2018). Regardless of why researchers do not focus on the high correlations of gender diversity and autism, future research is needed to explain this correlation and how it has come about (Attanasio et al., 2021), as 0.6% of adults in the United States identify as transgender (Bowman et al., 2022) but approximately 15% of the autistic population identifies as autistic (Maroney & Horne, 2022), with LGB sexuality being related to gender diversity for some autistic people (George & Stokes, 2018). When conducting research among autistic individuals, language choice is important to ensure accurate data, with different gender identities as options to choose from, including man, woman, trans man, trans woman, non-binary, and “fill in the blank” as use of the word “other” can be stigmatizing (Gomes et al., 2021; Heylens et al., 2018; Libsack, 2021). Diagnostic criteria for autism would benefit from adjustments for evaluation of AFAB people and transgender people, the norm for diagnosis was modeled on young AMAB clients and practitioners may need to adapt the diagnosis process for adults, AFAB clients, and transgender people (Lim et al., 2022; Tankersley, 2021). Research into serving the complex care needs of autistic transgender individuals is needed as autistic people may have more difficulty expressing intersecting needs and may struggle to express complex emotional ideas and make sense of their identity (Cooper et al., 2022; Tankersley, 2021; Thrower et al., 2019). Up to 77% of transgender people want therapeutic care to support transition (Holt et al., 2021), but many are unable to find practitioners effective among autistic transgender clients and provide effective supports (Jones et al., 2011; Pinna et al., 2022; Walker, 2021). As both transgender populations and autistic populations are both at greater risk of suicide, up to nine times greater than typical populations, research into supporting this population with timely supports is crucial (Kallitsounaki & Williams, 2022). Research on autistic peer support groups may be helpful as multiple studies show the benefit of having autistic transgender role models and peer engagement, but few supports are provided to meet this need (Mezzalira, 2022; Strang et al., 2021; Tankersley, 2021). Research on autistic identity development would be helpful, as neurodivergent people may experience identity development in very different ways than neurotypical models the world of psychology relies upon (Ehrensaft, 2018; Kallitsounaki & Williams, 2022). Additional research exploring the conceptualization of gender for autistic people could be beneficial as some researchers posit for some autistic people, their transgender identity could be described as a special interest and not necessarily something the person needs to act upon, while for others, society’s binary definitions chafe against autistic rigidity and these autistic people find themselves self-describing as transgender because the strict binary roles do not feel comfortable (Maroney & Horne, 2022; Saffie & Bauerle, 2023). Research into autism and hormone differences, chromosomal differences, and physical sex dimorphisms relating to intersex identities would be useful as some researchers posit autism as a gender defiant disorder due to biological markers leading towards physical sex convergence in autism, rather than only one’s mental concept of gender identity (Gasser et al. 2021; Gasser et al., 2022; Kirkovski et al., 2013). Additional research noting how much of influence hormonal differences have on autistic development of gender identity could help differentiate gender identity and physical sex differences, which could support effective decision making in treatment (McKenna et al., 2021). The relationship between autism and chronic pain is not well understood, other than through increased physical and emotional stress due to marginalization and further research to attenuate the points of chronic pain would be beneficial (Davies, 2023; Shah & Bobade, 2018; Walker, 2021).  Conclusions The thirty peer reviewed research papers on gender diversity and autism analyzed as part of this systematic literature review demonstrate a connection between autism and gender defiance (Gasser et al. 2021; Kung, 2020). Approximately 15% of autistic adults identify as gender divergent (Maroney & Horne, 2022; Strang et al., 2021; Thrower et al., 2019) and between 11% to 45% (Strang et al., 2023; Thrower et al., 2019) of transgender and non-binary individuals are autistic. Autistic people demonstrate gender convergent physical traits, such as facial features and digit ratios (McKenna et al., 2021), along with atypical androgen rates in AFAB autistics (Attanasio et al., 2021; Gasser et al. 2021; Gasser et al., 2022) and autistic diagnosis correlating with androgen exposure in utero (Attanasio et al., 2021; Kirkovski et al., 2013; McKenna et al., 2021). It is likely these factors contribute to atypical development of gender and sexual identities in autism, but more research is needed to identify and understand contributing factors to this atypical gender and sexuality development in autism (Kallitsounaki & Williams, 2022; Mezzalira, 2022; Saffie & Bauerle, 2023). Autistic people have more complex needs in physical and mental health care due to communication challenges associated with the diagnosis, and practitioners serving autistic individuals would benefit from understanding how better to accommodate to autistic communication needs (Libsack, 2021; Maroney & Horne, 2022; Strang et al., 2021; Walker, 2021).  REFERENCES
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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 Libsack, E. J., Keenan, E. G., Freden, C. E., Mirmina, J., Iskhakov, N., Krishnathasan, D., & Lerner, M. D. (2021). A Systematic Review of Passing as Non-autistic in Autism Spectrum Disorder. Clinical child and family psychology review, 24(4), 783–812. https://doi.org/10.1007/s10567-021-00365-1 Lim, M., Carollo, A., Dimitriou, D., & Esposito, G. (2022). Recent Developments in Autism Genetic Research: A Scientometric Review from 2018 to 2022. Genes, 13(9), 1646. https://doi.org/10.3390/genes13091646 Macafee, L. (2024). Recollection of personal experience in the healthcare field from 2019. 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. 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 Mezzalira, S., Scandurra, C., Mezza, F., Miscioscia, M., Innamorati, M., & Bochicchio, V. (2022). Gender Felt Pressure, Affective Domains, and Mental Health Outcomes among Transgender and Gender Diverse (TGD) Children and Adolescents: A Systematic Review with Developmental and Clinical Implications. International journal of environmental research and public health, 20(1), 785. https://doi.org/10.3390/ijerph20010785 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 Pinna, F., Paribello, P., Somaini, G., Corona, A., Ventriglio, A., Corrias, C., Frau, I., Murgia, R., El Kacemi, S., Galeazzi, G. M., Mirandola, M., Amaddeo, F., Crapanzano, A., Converti, M., Piras, P., Suprani, F., Manchia, M., Fiorillo, A., Carpiniello, B., & Italian Working Group on LGBTQI Mental Health (2022). Mental health in transgender individuals: a systematic review. International review of psychiatry (Abingdon, England), 34(3-4), 292–359. https://doi.org/10.1080/09540261.2022.2093629 Rojas Saffie, J. P., & Eyzaguirre Bäuerle, N. (2023). Etiology of gender incongruence and its levels of evidence: A scoping review protocol. PloS one, 18(3), e0283011. https://doi.org/10.1371/journal.pone.0283011 Shah, D., Bobade, S. (2018). Polycystic Ovarian Syndrome and Autism. Journal of Psychosocial Research; New Delhi 13(2), 435-442. DOI:10.32381/JPR.2018.13.02.18 Strang, J. F., Kenworthy, L., Dominska, A., Sokoloff, J., Kenealy, L. E., Berl, M., Walsh, K., Menvielle, E., Slesaransky-Poe, G., Kim, K. E., Luong-Tran, C., Meagher, H., & Wallace, G. L. (2014). Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Archives of sexual behavior, 43(8), 1525–1533. https://doi.org/10.1007/s10508-014-0285-3 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., Knauss, M., van der Miesen, A., McGuire, J. K., Kenworthy, L., Caplan, R., Freeman, A., Sadikova, E., Zaks, Z., Pervez, N., Balleur, A., Rowlands, D. W., Sibarium, E., Willing, L., McCool, M. A., Ehrbar, R. D., Wyss, S. E., Wimms, H., Tobing, J., Thomas, J., … Anthony, L. G. (2021). A Clinical Program for Transgender and Gender-Diverse Neurodiverse/Autistic Adolescents Developed through Community-Based Participatory Design. Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53, 50(6), 730–745. https://doi.org/10.1080/15374416.2020.1731817 Strang, J. F., Wallace, G. L., Michaelson, J. J., Fischbach, A. L., Thomas, T. R., Jack, A., Shen, J., Chen, D., Freeman, A., Knauss, M., Corbett, B. A., Kenworthy, L., Tishelman, A. C., Willing, L., McQuaid, G. A., Nelson, E. E., Toomey, R. B., McGuire, J. K., Fish, J. N., Leibowitz, S. F., … Yang, J. S. (2023). The Gender Self-Report: A multidimensional gender characterization tool for gender-diverse and cisgender youth and adults. The American psychologist, 78(7), 886–900. https://doi.org/10.1037/amp0001117 Tankersley, A. P., Grafsky, E. L., Dike, J., & Jones, R. T. (2021). Risk and Resilience Factors for Mental Health among Transgender and Gender Nonconforming (TGNC) Youth: A Systematic Review. Clinical child and family psychology review, 24(2), 183–206. https://doi.org/10.1007/s10567-021-00344-6 Tawfik, G.M., Dila, K.A.S., Mohamed, M.Y.F. et al. (2019). A step by step guide for conducting a systematic review and meta-analysis with simulation data. Trop Med Health 47(46). https://doi.org/10.1186/s41182-019-0165-6 Thrower, E., Bretherton, I., Pang, K. C., Zajac, J. D., & Cheung, A. S. (2020). Prevalence of Autism Spectrum Disorder and Attention-Deficit Hyperactivity Disorder Amongst Individuals with Gender Dysphoria: A Systematic Review. Journal of autism and developmental disorders, 50(3), 695–706. https://doi.org/10.1007/s10803-019-04298-1 Walker, M. (2021). Exploring The Cyc Cis-Tem: A Literature Review Of Queer And Trans Topics In Child And Youth Care. International Journal of Child, Youth and Family Studies 12(3-4), 23–54. https://doi.org/10.18357/ijcyfs123-4202120333 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  Effective Treatment for Transgender Autistic Adultsby Lisa Macafee I reviewed eight articles discussing treatments effective for transgender adults, three articles discussed best practices for autistic adults, and ten articles specifically addressed serving the complex needs of transgender autistic adults. Implications for effective and informed treatment for the adult gender expansive autistic population found in this literature review are many. Two main themes emerged. Theme one centers on the need for clinician acceptance of gender expansiveness outside the binary and acceptance of transgender identities and more effective evaluation of autism. Theme two centers on the complex care needs of autistic adults and how best to serve them. According to Davies (2023), due to up to 65% of autistic adults having one or more mental health diagnosis and 60% having chronic physical health concerns, autism costs the United States economy over $460 billion dollars each year due to care required around these conditions and difficulty finding work accommodating to the needs of autistic individuals. These significant economic impacts point towards the social responsibility to support autistic adults to live healthy and fulfilling lives (Strang et al., 2021). There are small modifications to care yielding great results, such as respecting the language a person uses to identify themselves, whether it is as “autistic”, “person with autism”, “transgender”, “non-binary”, “bi-gender”, or any other phrase a practitioner may be less familiar with (Tankersley, 2021), and more complex care adjustments such as working through post-traumatic stress disorders through a neurodiversity and gender-affirming lens to benefit autistic transgender clients (Saffie & Bauerle, 2023), but our current system can be alienating and harmful to autistic transgender adults and would benefit from being updated (Pinna et al., 2022).  Theme One: Clinician Acceptance of Gender Expansiveness and Evaluation of Autism Nine articles used discuss the importance of clinicians better understanding and accepting transgender and non-binary identities as a crucial component to receiving appropriate care, four articles focus on the importance of effective and open-minded autism evaluations, and four articles focus on a need for better research to support effective care programs for autistic transgender people. “There are a number of barriers to accessing services as a TNG autistic person due to limited affirming providers or services… I’ve experienced providers who use autism to undermine gender identity, fail to affirm my identities, or overexplain unrelated challenges” (Maroney & Horne, 2022). Autistic clients may not embrace a binary male or female identity due to neurocognitive and hormonal differences and it may benefit for clinicians to embrace viewing gender as a spectrum (Cooper et al., 2022; George & Stokes, 2018; Strang et al., 2023). Gender is often expressed differently by autistic people and may be fluid over the lifespan (Ehrensaft, 2018) and it is important to understand someone’s assigned sex at birth is not necessarily the same as someone’s gender identity (Libsack, 2021). Due to the impact of hormones expression in autism, sex should be considered on a bimodal continuous spectrum instead of a concrete binary (McKenna et al., 2021). Much of the peer-reviewed research to date does not include transgender identities, and those which do often ignore much of the autistic experience of non-binary gender identities, for example, one study on AFAB autistics noted 11% of the participants identified as “other” for gender, but did not comment on this finding (Allely, 2018). Supports could be better adapted for autistic populations, such as ensuring LGBTQ-affirming providers partake in training and education for transgender and non-binary identities and research includes gender spectrums and not exclusively binaries (Walker, 2021). Providers should be aware of transgender or non-binary identities in themselves are not mental illnesses and individuals expressing these ideas should not be stigmatized or marginalized (Bowman et al., 2022). Autistic people are often transgender and should not be denied gender care due to their autism (Maroney & Horne, 2022; Thrower et al., 2019) and conversion, reorientation, and restorative therapies are often harmful (Gomes et al., 2021). Evidence exists to recommend evaluation of autism for clients with gender dysphoria and gender dysphoria for autistic clients, especially those AFAB (Jones et al., 2011; Kallitsounaki & Williams, 2022; Tankersley, 2021). Pursuing an autism diagnosis may yield insights into mental health care and treatment otherwise unmet by gender dysphoria treatment alone (Jones et al., 2011). Core features of autism may predispose people to identify outside their assigned gender at birth, more research is needed to explore why this association exists (Kallitsounaki & Williams, 2022). Effective evaluation of autism requires practitioners broaden their scope of understanding as the “frustration participants experienced for being made to feel that there was something inherently wrong with them for living authentically as neurodivergent, and TNG was evident” from research and these cause barriers to treatment and diagnosis (Maroney & Horne, 2022).  Theme Two: Complex Care Needs Two articles discuss the complex physical health care needs of autistic transgender adults, and ten articles discuss the complex mental health care needs of autistic transgender adults. Gender diversity and autism interact with each other to yield complexities often resulting in trauma needing to be addressed in a culturally competent way to avoid further harm (Pinna et al., 2022). Both autistic populations and transgender populations have increased risks of suicide, substance abuse, and mental health concerns and need effective care (Kallitsounaki & Williams, 2022). Provided mental health care should be done with awareness of autistic people often needing more processing time to work through their gender identity, autistic identity, and articulate complex emotional reactions (Cooper et al., 2022). Autistic adults may need support in identity development and differentiating gender incongruence from special interests, compulsions, or rigidity associated with autism (Saffie & Bauerle, 2023). Peer community, family, and community connection serve as resilience factors buffering the harms of trauma and stigma and should be encouraged and supported (Mezzalira, 2022; Tankersley, 2021) and transgender autistic people benefit especially from having a gender divergent role model to explore and affirm gender with (Strang et al., 2021). “Generally, interviewees found it easier and more comfortable to connect, seek advice, and communicate on a “deeper level,” with other LGBTQ+ autistic individuals” (Maroney & Horne, 2022). “Additionally, autistic people often experience chronic pain which should be discussed by providers (Davies, 2023) and medications currently used to treat conditions such as PCOS may be helpful in treating unwanted aspects of hyperandrogenism in autism (Gasser et al. 2021). Higher quality of life with less suicidal ideation and mental health concerns, can be achieved with dedicated work towards self-efficacy, acceptance, and improving self-concept (Mezzalira, 2022). Providing access to gender affirming care and supporting social transitioning with mental health care for autistic adults may reduce distress (Bowman et al., 2022; Tankersley, 2021), but most autism tools are not validated to include gender diverse people (Heylens et al., 2018). As a result of interacting with cisgender neurotypical people, may autistics “described that these interactions with NT or cisgender people made them feel as if they were not human, using metaphors such as being ‘a computer,’ ‘a robot,’ or ‘an insect,’ as ‘normative culture’ viewed them strangely” (Maroney & Horne, 2022). Approximately 80% of transgender people pursue gender transition and those who do see a direct tie to well-being (Gomes et al., 2021) and 77% of transgender people desire supportive mental health care around transition but express a lack of qualified providers (Holt et al., 2021).  Discussion Many associations of autism care require further investigation. More research is needed to investigate the correlations between autism and gender diversity and if autism contributes to the development of gender diversity or if gender diversity is caused something else (Kallitsounaki & Williams, 2022). Gender for autistic adults is better understood as a spectrum (Strang et al., 2023). It should be noted autistic people have complex needs surrounding working through intersectional stigma around gender diversity and autism (Pinna et al., 2022). Summary Research demonstrates an overrepresentation of autistic traits among gender diverse individuals (Ehrensaft, 2018; Heylens et al., 2018; Kallitsounaki & Williams, 2022). Rates vary study to study, but between 23% to 75% of gender-affirming seeking care patients show significant levels of autistic traits (Ehrensaft, 2018; Strang et al., 2021; Thrower et al., 2019) and 11% to 23% (Kallitsounaki & Williams, 2022; Thrower et al., 2019) having an autism diagnosis. Higher rates of gender non-conformity are present among autistic people (Cooper et al., 2022; Davies, 2023; George & Stokes, 2018) with approximately 15% of autistic people identifying as transgender or non-binary (Kallitsounaki & Williams, 2022; Maroney & Horne, 2022; Strang et al., 2021), seven times more than average populations (Tankersley, 2021; Thrower et al., 2019). These findings seem to tie in with sexuality flexibility among autistic adults (Attanasio et al., 2021) as a lack of internalizing of social norms around gender may also be extrapolated to lacking internalizing social norms around sexuality (George & Stokes, 2018). Many autistic gender divergent individuals identify as something other than binary transmen or transwomen, pointing to an importance for providers to understand gender as a spectrum and not a binary (George & Stokes, 2018; McKenna et al., 2021; Pinna et al., 2022). High androgen exposure in the womb is tied to higher rates of autism (Jones et al., 2011; Kirkovski et al., 2013; Shah & Bobade, 2018), gay, lesbian, and bisexual sexualities (Attanasio et al., 2021), which led to the extreme male brain theory of autism linking androgen and autism (Gasser et al., 2022; McKenna et al., 2021; Nobili et al., 2018). There are a number of biological markers lending towards AFAB autistic people having higher testosterone and masculine characteristics (Gasser et al. 2021; Jones et al., 2011; Kirkovski et al., 2013) and AMAB autistics having more feminine characteristics leading some to posit autism as a gender defiant disorder due to convergent physical sex features present in autism and higher androgynous traits among autistics (Kirkovski et al., 2013; McKenna et al., 2021). While there is research linking gender diversity and autism, some studies present up to 11% of their participants identifying as transgender and not commenting on it at all (Allely, 2018), which may contribute to a lack of understanding of the significance of these findings in professional communities (Heylens et al., 2018; Holt et al., 2021; Maroney & Horne, 2022). Some providers deny autistic people gender affirming care due to writing off the person’s gender dysphoria as autistic rigidity, compulsion, or special interest (Saffie & Bauerle, 2023; Thrower et al., 2019). More research is needed to determine the nature of these associations (Kallitsounaki & Williams, 2022) and more training is needed for providers to provide effective care around gender diversity (Walker, 2021). Autistic gender divergent people having community interaction, peer connections, gender divergent role models, and family bonds support them to thrive instead of simply survive (Tankersley, 2021). Autistic transgender people have complex care needs due to their intersecting identities; patient, thoughtful, and affirming care will support individuals to have a higher quality of life (Kallitsounaki & Williams, 2022; Mezzalira, 2022; Strang et al., 2021).  ReferencesAllely, C.S. 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Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender. Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc). I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook! AuthorLisa Macafee, autistic counselor with a hankering for social justice. Archives
December 2024
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