Why we need to start talking about the risk of trauma for those with autism.
It is a sad truth that the majority of the early research into autism spectrum disorder (ASD) was done with young children, most of whom were boys. It is hard to find research into the lives of adults with autism before 2000 and virtually impossible to find research on adult women with autism. As an autistic woman, it is frustrating for me to know that the quality of life of adults with autism was ignored for decades. This has led to several massive problems that are only now coming to light. One of these problems is the extraordinarily high number of women with autism that have been through serious trauma and meet diagnostic criteria for posttraumatic stress disorder (PTSD).
The more I have worked with women and people with ASD, the more I have noticed the prevalence of this correlation. The vast majority of my clients with ASD have some kind of trauma history. This is true for all my clients with autism regardless of gender, but it seems to be almost 100 percent true for my female clients. Many of my clients have been raped and sexually abused on multiple occasions, and the more clients I work with, the more I have realized that this is a major problem that needs to be addressed.
A brief dive into the research associated with this trend showed me that there wasn’t that much research on this subject. A study by Reuben, Stanzione, and Singleton (2021) showed that out of 687 adults with autism, 72 percent had experienced sexual assault, other unwanted sexual experiences, or physical assault, and 45 percent of the sample had PTSD. It also showed that cisgender women with autism were significantly more likely to meet the criteria for PTSD.
Haruvi-Lamdan et al. (2020) noted that people with ASD show an increased risk of experiencing potentially traumatic events, but this co-occurrence has "hardly been studied at all." In their sample, they showed that adults with autism were 32 percent more likely to have PTSD than the general population.
Small Study of Those Assigned Female at Birth
Of course, neither of these studies particularly looked at those who were assigned female at birth. In the fall of 2021, my private practice, Tree of Life Behavioral Health, did a small study to look at this phenomenon. Initial participants were drawn from the Facebook Group: Neurodiverse Women. Free autism testing was offered as compensation for participation in the study. Our sample size was small, and only 12 women and individuals assigned female at birth participated in the study. The study consisted of several phases and went on over the course of five months. As our resources were limited, we did not have a large enough sample size to make any statistically significant conclusions based on our results. We also lacked control groups from the non-ASD population and the male autistic population. However, the results are notable enough to discuss and to show that further research is necessary.
Participants were women and others who were assigned female at birth including transgender males and nonbinary participants. The group was administered the Autism Diagnostic Interview-Revised Addition (ADI-R) and the Posttraumatic Symptom Scale Inventory (PSSI). Each participant then answered a series of qualitative questions about their experiences as a person with ASD assigned female at birth.
One participant was excluded from the study as they did not meet diagnostic criteria for ASD based on their testing with the ADI-R. Out of the remaining sample, 11 out of 12 of those who met diagnostic criteria for autism also met diagnostic criteria for PTSD.
In our sample, 91.6 percent of women with autism had histories of physical and emotional abuse, rape, incest, or trauma. All but one of them had PTSD. At this point, I have to ask, why aren’t we talking about this more? Why don't people know about this problem? With all the autism awareness days and months and campaigns, why aren't we aware of this?
It is widely accepted that women with ASD are underdiagnosed or late diagnosed. It is also widely accepted that women with ASD report that their experiences are not understood by professionals and that women have difficulty finding the help they need (Leedham, Thompsom, Smith, & Freeth, 2019). Several recent studies have also shown extremely high death rates by suicide for adults with ASD (South, Costa, and McMorris, 2021).
We talk so much about children with autism, and we talk about how to help schools and parents deal with their behaviors, but then we forget. We forget, and in that space of forgetting, our once beloved children with autism experience trauma after trauma. Most of us don't even know that this is a major problem. We don't know that the children with autism who were taught to hide their autistic behaviors grow into adults with autism who learned to mask so well that they didn’t even know how to communicate when they needed help.
Trauma rates are extraordinarily high in people with autism.
How to Move Forward
This is where we need to move forward. This is where our work needs to begin as researchers, as professionals, as family members, and as a society. We need to stop looking at people with autism as a group of children that need to be taught to act normal, mask, camouflage, and cover their natural behaviors to make others happy and start looking at people with autism as a group of children and adults that need to be taught to communicate, stand up, and fight for the right to live happy, trauma-free lives.
I know that the correlative data I have lack the strength to make any causative conclusions, but it does seem like we can at least say that these are data we should know about and be talking about. We should be talking about the data from all of the studies that show PTSD rates are ridiculously high in people with autism. There are questions we should be asking about these data. We should be asking if early diagnosis of autism might help decrease these trauma numbers. We should be asking if there are better treatments for our children with autism and if we could design treatments that would focus less on teaching our children with autism to cover their autistic behaviors and focus more on teaching them to be safe and happy.
Haruvi-Lamdan, Nirit, Horesh, Shani Zohar, Kraus, Meital, & Golan, Ofer (2020). Autism spectrum disorder and post-traumatic stress disorder: An unexplored co-occurence of conditions. Autism 24 (4). 884-898
Leedham, Alexandra, Thompson, Andrew, R. Smith, Richard, & Freeth, Megan. (2019). 'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism.
Reuben, Katherine E., Stanzione, Christopher M, & Singleton, Jennifer L (2021). Interpersonal trauma and posttraumatic stress in autistic adults. Autism in Adulthood 3 (3), 247-256.