I’m continuing this week with a look at another excerpt from a study titled “The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype” from authors Sarah Bargiela, Robyn Steward, and William Mandy, published online in 2016 (read the full study here). The study was performed in the UK and published in the Journal of Autism and Developmental Disorders.
In last week’s post (here), I introduced the blog and this UK study, which I found incredibly interesting and important. As a woman on the spectrum who was not diagnosed until late in life, at the age of 28, I find it fascinating to look at the reasons why Asperger’s in women is so much more difficult to identify and peg down than Asperger’s in boys. I hear from women all the time through social media who had no idea they had Asperger’s until their children clued them in through their own characteristics or they began seeing a therapist for one of the very common co-occurring mood disorders in women on the spectrum like anxiety and depression.
“We interviewed 14 women with ASC who had received their diagnosis in late adolescence or early adulthood, in order to learn more about the female autism phenotype and how it impacts upon the recognition of ASC. We took an inductive (i.e., data-driven), qualitative approach in order to generate new ideas and to deepen understanding of existing concepts. Our aim is that this work will contribute to future quantitative investigations of the female autism phenotype by generating novel hypotheses and informing the development of appropriate measures.”
I mentioned last week how one of the most striking aspects of this fairly recent study is the suggestion that this is a very, very new area of study where there is much need for further investigation. What has become clear to me through connecting with other women on the spectrum through social media is that we have been addressing the need for support in our own ways, from the ground up, through forming groups on Facebook and communities through online publications and blogs that provide information, resources, and simple avenues for sharing one’s thoughts with those who understand the unique experience and struggle of women on the spectrum. It has been eye-opening to read posts from these women, day after day. There is hardly a day that goes by when I don’t read from these posts and identify closely with these women’s experiences.
What is important to me in this article is the basis of recognition that there is, in fact, a unique “female autism phenotype” that needs to be examined and explored in-depth. For so long autism diagnosis has been predominantly measured against a set of criteria that have been developed through the observation of mostly male cases. Some of the most common differences between boys’ and girls’ autistic traits were mentioned last week. This week, I wanted to touch on something that is not always mentioned in conjunction with autism, but which has been proven to be a very common issue among individuals, especially women, on the spectrum. And that is the internalization of the autistic struggle that turns into mood disorders like anxiety and depression.
“There is an emerging evidence-base to support the existence of this female autism phenotype. For example, in line with the reports of clinicians and people with ASC, there is empirical evidence that girls and women with ASC show higher social motivation and a greater capacity for traditional friendships than do males with ASC (Head et al. 2014; Sedgewick et al. 2015). Furthermore, compared to equivalent males, females with ASC are less likely to have externalising behaviours, such as hyperactivity/impulsivity and conduct problems, and are more vulnerable to internalising problems, such as anxiety, depression and eating disorders (Mandy et al. 2012; Huke et al. 2013); and consistently score lower on measures of repetitive and stereotyped behaviour (Van Wjingaarden-Cremers et al. 2014).”
Some adult women, including myself, come to the realization that they may be on the spectrum through personal research after having struggled for many years with intense social anxiety. All through my childhood I was considered quiet and shy, but there really wasn’t much to examine past this. I felt that I certainly struggled a great deal more than anyone I’d ever known who also characterized themselves as shy, and there was such an incredibly high level of effort and energy I needed to expend just to keep up with and imitate what I believed was expected of me on a social level, even in middle school.
Whether it was exhaustion; fear of embarrassment through social mistakes; insecurity about my looks; feeling stupid while everyone around me seemed to have long since internalized the “manual” for social interaction; not “getting” the jokes, smiling and laughing even when I had no idea what people were talking or laughing about; feeling unable to carry on a conversation that did not seem to have concrete purpose; lack of connection with most peers; or all of these things combined…the result was that I developed a very severe daily anxiety which reached its peak once I entered a work space where there was no longer a clear, linear set of steps to take to get the job done.
When I began teaching at a school for kids with autism, I dove into all the books, documentaries, YouTube videos, and online articles I could find on the subject of autism, somewhere in there discovering the term “Asperger’s.” I began at the school as an aide, paired with a single student for whom I was responsible for the duration of a daily summer camp which convened for a few hours each day, Monday through Friday, for about 10 weeks over summer break. The environment was rather loose and laid back, which at first was a comfort. But I soon realized that when I did not have a certain “rule” or process to fall back on, things we’d been taught during our very brief training period, I had no idea what to do. (The school subscribed exclusively to a “zero punishment” and controversial ABA therapy policy, which I may discuss in a later post.)
I managed through the summer and by the end, I was asked to stay on as an aide for another student for the school year. I agreed and very much enjoyed my responsibilities. The student I was assigned to watch over never really had any issues or struggles while I was there. He was a high school student and seemed to get along quite well. Because of this, I had the freedom to extend my help to the teachers in different ways as I went through the school day alongside this student’s schedule. I met several different teachers and was pleased to find that I could handle certain situations for which I’d been trained, such as when a student needed a break from the classroom. I could supervise some time with the student out in the hall and knew the rules as to how much time was supposed to be allotted and how many “breaks” a student was allowed within a certain time frame. I also helped with charting data related to individual students’ IEPs, or Individualized Education Programs.
I was feeling okay in this position, but a few months into the school year, I was pulled aside and asked if I would take over an entire middle school classroom, as one of the teachers had been injured and would be unable to work for a while. I wouldn’t say I was overtly pressured, but the conversation certainly felt as if I was absolutely expected to say yes, and so I did. Though I soon wished very much that I had simply stayed where I felt comfortable and useful. The classroom I was assigned put me in charge of a large group of middle school-aged kids, and though I handled the teaching responsibilities quite well, the anxiety surrounding certain elements of my work quickly became something I could not tolerate. The anxiety became so bad that there was not a moment in my life, no matter where I was in the week, when I did not feel almost to the point of panic with anxiety.
The biggest trigger for this anxiety was not even teaching, it was something most neurotypicals would consider quite simple and easy. For me, it was an unbearable mixture of terror and fear that made it difficult to walk straight, let alone function professionally.
Each morning the teachers in the middle school, who were all new to me, would gather in the hallways to talk to each other casually and greet the kids coming in for school. They had all known each other for a long time, it seemed, and I was totally lost. I had never, since being hired, managed to form even the semblance of friendship or even professional camaraderie with anyone I worked with, and I had to watch as those who were hired at the same time as me quickly formed friendships with others, always talking about weekend plans together, personal drama, etc.
I tried this. Once. I took my travel mug of coffee (going out to face people without something in my hands was absolutely not an option) and walked out into the hall. I instantly felt silly and out of place. I felt like everyone was looking at me wondering, what the hell is she doing here? It was the first and last time I tried. From then on out, I simply made it seem as though those ten minutes at the beginning of the day were when I just had to prepare for my first class. I would be sure to have something to be writing on the whiteboard should anyone come in and for some reason feel the need to talk to me.
The anxiety brought on by many factors in this new position eventually prompted me to leave the school. Shortly thereafter I sought out a therapist and at some point asked about a referral to someone who had experience diagnosing autism in adults. And the rest is history.
During that time, I was also diagnosed with depression, and this has also been a struggle in a sometimes unpredictable cycle ever since, though I’ve developed some very effective coping mechanisms to help me through these times.
In short, my story is not unique. Most Aspie women I’ve talked to say they’ve struggled with anxiety and depression. Many have even experienced misdiagnosis in their childhoods, sometimes more than once! I’ve talked to some women whose psychologists told them they have borderline personality disorder or ADHD, only finding out about Asperger’s many, many years later.
We have a ways to go in terms of thoroughly understanding the manifestation of autism in women, but I feel that the support, connection, and access to information that exist online through social media and specialized online publications will play a big part in the advancement of awareness and understanding. I hope to contribute in some meaningful way to this rising awareness.