June 15, 2020, Lisa Macafee
I’ve never met a cis-straight AFAB autistic. I’m sure they exist, I just haven’t met any. I *think* this is because our neurology sets us apart, but I can only speak for myself.
Gender seems entirely a social construct to me created to fit us into boxes and tell us what our social roles and personality characteristics should be. For myself, the “female” expectations never fit me and have created much stress, anxiety, and shame. I only found out labels beyond trans and queer, which never felt quite right for myself at 37 years of age and before that mostly felt just “wrong”. When you don’t have a term for yourself, most people just assume they’re bad, myself included. I now have AFABulous (AFAB = assigned female at birth), agender or gendervague, greysexual, and pan.
It’s not just me, either. Autism reduces the drive to follow social etiquette and norms. Autistic youth are 7.76 times more likely to express gender non-conformity than their neurotypical peers. It’s possible that autism could be a root cause of gender diversity, and those who are autistic are also likely to experience gender dysphoria (Janssen, A., Huang, H., & Duncan, C., 2016).
According to research from a Gender Clinic in Australia, approximately one third of gender diverse children in their clinic also qualify as autistic, but are often not diagnosed because their atypical traits are attributed to their transgender status and other causes are not investigated. This is important to note as far as mental health concerns because those youth who were gender diverse and autistic also had higher rates of unhealthy internalizing coping techniques. These youth were significantly more likely to struggle with anxiety, depression, withdraw, physical complaints, and thought problems and reported a lower quality of life. The overlap between autism, gender diversity, and mental health factors suggests that gender diverse autistics are an especially vulnerable group with higher rates of mental health challenges (Mahfouda, S., Panos, C., Whitehouse, A.J.O., Thomas, C.S., Maybery, M., Strauss, P., Zepf, F.D., O’Donovan, A., van Hall, H-W., Saunders, L.A., Moore, J.K., Lin, A., 2019).
Sadly, many people who would qualify as autistic, but weren’t because they were girls/ trans/ doing-well-academically/ whatever have the same struggles of feeling “wrong”. In a study at Anglia Ruskin University, Stagg and Belcher noted that adults who were untreated for autism often were treated ineffectually for anxiety and depression. As children, some in the study reported having no friends and as adults not understanding what set them apart. Dr. Stagg said “One aspect of the research I found heart-wrenching was that the participants had grown up believing they were bad people. They referred to themselves as "alien" and "non human".” For many such people, an autism diagnosis is a breakthrough that explains why they were different without attributing their difference to “being bad” (Stagg, S., & Belcher, H., 2019).
I grew up with the LGBT movement, and I’ve never identified as being “into women” because I’m not into any gender. I’m into a person’s politics, personality, and work that is attached to a meat sack of birth accident. Why anyone is attracted to the body first, I cannot fathom. Plus, if I’m being honest, bodies are all kind of gross. What can I say? I’m weird, medically so.
Speaking of medically weird, I also have Poly-Cystic Ovarian Syndrome (PCOS) which, for me, means that I also have increased testosterone levels close to that of an AMAB person (Assigned Male At Birth). Strange, right? I have broad shoulders, gain muscle tone seemingly just by thinking about it (much to the jealousy of my male partner) and even have bigger hands than him, too. It’s no wonder my gender identity is a mess. I have found PCOS groups who self-identify as being intersex (variations in chromosomes, reproductive organs, or hormones), because of having PCOS, and I can say there is some degree of validity for myself here as well.
While controversial, the Androgen theory of Autism that stipulates that higher than average levels of testosterone in utero contribute to an autistic birth. The findings were that significantly more women with Autism Spectrum Conditions (ASC) reported hirsutism (being hairy), bisexuality or asexuality, irregular menstrual cycle and dysmenorrhea [likely due to PCOS], severe acne, Gender Non-Conformity (GNC), and “family history of ovarian, uterine, and prostate cancers, tumors, or growths”. Mothers of ACS children reported severe acne, breast and/or uterine cancer, tumors, or growths, and the same family history of cancer that ASC girls reported. These findings may help explain the greater incidence of autism in boys, but more research needs to be done to determine correlation versus causality. It does tie my personal weird into thousands of other women and make me feel like one of a tribe, however! (Ingudomnukul, Baron-Cohen, Wheelwright, Knickmeyer, 2007).
I started this blog because it feels like no one understands autism in adult AFAB autistics. I was not diagnosed until my children were and I realized there were *other people like ME*! I could not believe I missed all the club meetings until my late 30s. Autism is especially missed in those who perform well in school, where language is not impaired, and typically in girls. If we can identify early and late signs of autism and make services available for the needs of our community, we can reduce anxiety and depression, decrease the suicide rate for autistics, and help autistic people lead meaningful lives well into their adulthood.
Boorse, B., Cola, M., Plate, S., Yankowitz, L., Pandey, J., Schultz, R. T., & Parish-Morris, J.. (2019). Linguistic markers of autism in girls: evidence of a “blended phenotype” during storytelling. Molecular Autism, (1), 1. Pages 1-12.
Ingudomnukul, E., Baron-Cohen, S., Wheelwright, S., & Knickmeyer, R. (2007). Elevated Rates of Testosterone-Related Disorders in Women With Autism Spectrum Conditions. Hormones and Behavior 51, Pages 597–604.
Janssen, A., Huang, H., & Duncan, C. (2016). Gender Variance Among Youth with Autism Spectrum Disorders: A Retrospective Chart Review Transgender Health Volume 1.1. Pages 63.69.
Mahfouda, S., Panos, C., Whitehouse, A.J.O., Thomas, C.S., Maybery, M., Strauss, P., Zepf, F.D., O’Donovan, A., van Hall, H-W., Saunders, L.A., Moore, J.K., Lin, A. (2019). Mental Health Correlates of Autism Spectrum Disorder in Gender Diverse Young People: Evidence from a Specialized Child and Adolescent Gender Clinic in Australia. Journal of
Clinical Medicine, 8, 1503.
Stagg, S., & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7:1. Pages 348-361.
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!
Lisa Macafee, autistic counselor with a hankering for social justice.