I never had a passion for working with those diagnosed with autism spectrum disorder. All the stereotypes associated with autism didn’t appeal to me as a clinician and I hadn’t bothered to look much beyond those stereotypes. I didn’t want to work with socially awkward men that liked math. Like most clinicians from my generation, my early training had led me to believe that autism was seen primarily in males and that there were four times as many males with autism than females. Additionally, all my exposure to autism had been with children brought to me by parents that desperately just wanted their children to “act right” or “act normal”. One of my adult female clients came to me saying they had autism, but I had a difficult time believing them because they did not meet my expectations of what autism should be.
Due to all my biases and lack of understanding, it took me over a year to see autism in the first client I diagnosed. The client was an adult female. She was high functioning and intelligent and she had a significant amount of trauma. She was unresponsive to most treatments and reacted to daily things like they were far more traumatic than they were. At first, I thought she might have borderline personality disorder, but as I got to know her, I began to see the cluster of symptoms that would lead to her eventual diagnosis. She stimmed. She tried to hide her stimming and would often pick her skin until she bled to prevent the stimming, but it was there. She rocked back and forth. Any loud noise upset her. Bright light could lead to a complete shutdown. She struggled to understand people and how they related to others and herself. She had been exceptional in school, but daily activities overwhelmed her. She watched videos on pimple popping for hours to calm down when she was anxious. She hyper fixated on activities and topics and would infodump on me in sessions. She indicated that people had told her to “act right” her entire life and her parents had always asked her “what was wrong with her?” due to her numerous atypical behaviors as a child. From a very early age, she had been emotionally battered into conforming to a series of behaviors she didn’t understand. She felt isolated and alone, even when she was surrounded by people.
Based on these behaviors, I administered the Autism Diagnostic Inventory-Revised Edition (ADI-R) and she tested positive for autism on every symptom cluster. This was only the beginning of my client’s journey, however. Other professional doubted the diagnosis. Her psychiatrist wouldn’t accept it. Her family wouldn’t accept it. The consensus was that she “didn’t seem autistic to them” therefore she couldn’t be autistic. My client went to two separate clinical psychologists for further testing and all testing confirmed my initial findings. She was autistic. Ironically, even after this her psychiatrist refused to accept the diagnosis and she had to change providers. This was the beginning of a journey that led to this client eventually reducing her anxiety and learning to accept herself enough so that she felt she no longer needed therapy. Her diagnosis with autism was central to her healing. She needed it to understand herself.
This was also the beginning of my desperate need to understand what had happened. How had I missed the critical piece of information that made so much difference in my client’s healing for almost a year? In missing this critical variable, I had prolonged my client’s treatment and suffering. My failure with this client encouraged me to look deeper into autism spectrum disorder. Apparently, my understanding was weak at best so I began to read everything I could find on women with autism.
It turns out I wasn’t alone in my lack of understanding of women with autism. According to Lai, Baron-Cohen, and Buxbaum ( Molecular Autism, 2015) females are consistently under-identified and underrepresented in scientific and clinical settings. Additionally, unlike their male counterparts, females with autism are more likely to be identified in adulthood. According to Leedham at al. ( Sage Journals, 2019), this discrepancy leads to females with autism receiving numerous misdiagnoses by professionals prior to their diagnosis and it also leads to increased anxiety and depression amongst women on the autism spectrum. Leedham’s research also shows that proper diagnosis is experienced by many women on the spectrum as facilitating a transition from “being self-critical to self-compassionate, coupled with an increased sense of agency.”
Over the years, as my practice focus has narrowed to include clients struggling with gender dysphoria, adults with autism, and trauma, I have seen the story of my first diagnosed client repeat itself repeatedly. Proper diagnosis for women has led all my clients to the path that leads to their growth and healing. Some of these clients have long psychiatric histories and have been diagnosed with everything from borderline personality disorder to bipolar disorder. Many have spent significant amounts of time in inpatient facilities trying to figure out why medication and treatment just don’t work for them.
According to the Female Autism Phenotype theory, females are just as likely to have autism as males. They have symptoms of autism at the same level but they present differently and are less likely to have the intellectual disabilities that often lead to early diagnosis. According to Duvekot et al (2017), clinical samples consistently underestimate the number of females with autism and they are significantly less likely to be identified as autistic than their male counterparts despite the fact that they have similar self-reported symptoms of autism.
Over the last 3 years, as my practice has been defined more and more by my work with females with autism, I have realized that this discrepancy between what people, including clinicians, expect autism to be and what it is in females had led to significantly increasing mental health problems in all my female clients with autism. Because they were told they had to be liked and keep up with their neurotypical female counterparts, they were overwhelmed by constant anxiety and fear. They felt like they were never good enough. They lost friends and relationships and they had no idea why and they hated themselves because they thought they were just bad people. Parents often were critical of their behavior in early childhood and that led to brutal self-criticism. The worst part of all of this is that many of the things they were criticizing themselves for they simply couldn’t change because, even if they didn’t know it, they had autism. They were told who they were was wrong and they masked all the things they were told was wrong which led to constant stress and anxiety.
In her book, Sarah Hendrickx says, “Even now, my greatest fear, source of indignation and sadness is the disbelief of others. I have not worked out how to respond politely to someone I met only a few minutes ago who tells me with apparent great authority, that I do not have autism, when every part of my inner being wants to say ‘And how the *** do you know? And to cry. The experience of being disbelieved about something that feels so hugely found is nothing short of devastating.”
This quote sums up how most women with autism feel. We found the answer. As Hannah Gadsby says “we have found the keys to ourselves, but the professional we go to for help won’t accept it.” The first step for us as professionals, is to learn how different autism is in women and guide them to finding the keys to the kingdom of themselves.