This week, I’m taking a final look at the article “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 in the Journal of Autism and Developmental Disorders. (Read full study here.) If you haven’t read the previous two posts, the article is all about a study performed in the UK that interviewed and looked at women on the spectrum and their unique manifestations in terms of autism characteristics. This is an important topic that has been gaining steam in the research and advocacy worlds as women who were never diagnosed or recognized as autistic in their youths are discovering their diagnoses on the spectrum through both self-evaluation and formal evaluation.
One of the big forces behind this growth is the wealth of online support and information offered by individuals and independent publications dedicated to raising awareness of women’s unique struggles and experiences with autism.
I’d like to look at a couple last observations from the article before closing this discussion out. The first is below. TW: Sexual Abuse.
“When describing her response to unwanted requests for sex within a relationship another said:
‘I almost feel pressured by society to do it because you get told this is what is expected of you to make to be a good girlfriend and you think, if I don’t do it, then I am not fulfilling my duties (P08).’”
This may have been the key entry in the study that served as a catalyst for wanting to write and share my experiences as a late-diagnosed Aspie. I’ve read many research books and memoirs regarding women on the spectrum, but this particular issue does not seem to have been discussed at length yet.
I had several odd experiences in college that I’ve puzzled over for years. It is comments like these from other Aspie women that make me realize that autism absolutely has had a big impact on my behavior through masking to fit into society. We are all familiar with society’s pressure on women to be beautiful and perfect girlfriends. Products, models and services fuel the need for women to be in constant opposition and competition with one other for the attention and affection of men. Those who fail at any aspect in this area often fall into a pit of insecurity, self-doubt, even depression and very low self-esteem. These feelings feed a cycle, with or without a loving partner to constantly tell them they are beautiful.
I noticed when I was a child dancing in ballet classes that I was bigger than all the other girls, but it didn’t really start to bother me until around puberty when I was discovering what it meant to be a girl and what I felt was required of me. This is difficult for neurotypicals, but as an Aspie, I was forming these mindsets while also flying blind in terms of self-worth, social status, how to be a friend and, especially, how to be a girlfriend. Like all other social behaviors I’d adopted from movies and TV, I learned what a “perfect woman” and “girlfriend” was supposed to be like. At that time, life was all about boy bands N’SYNC and Backstreet Boys and pop icons Brittany Spears and Christina Aguilera. Brittany in particular was what I thought perfect meant in every way. The problem with this was that I learned that I needed to be a perfect combination of sexy and cute, confident and proud of my sexuality, but also giggly and innocent. These assumptions manifested when I began my first “real relationship” in high school.
Long story short, I behaved in high school as if I was playing a game and was on a point system when it came to getting attention from boys. The fact that I had essentially stolen this boyfriend from someone who considered herself to be one of my close friends only meant that I had scored bonus points, as many of my friendships in high school were active friendships in rote behavior only, without depth, as the constant pressure to fit in socially ruled over my life. As I got older, being an attractive woman took precedence over even this pretense at being a good friend when one was in competition with the other.
In college, this mindset combined with a naïve assumption that I could control the situations I got into with boys became a recipe for putting myself in risky situations just because I felt strong pressure to be the fun, attractive, sexy woman I thought I had to be as a college girl. I partied, I drank, I flirted, then I ran away as quickly as possible alongside fake friends who would never truly have my back. Sometimes, things would happen while I was drunk. Then I would blame it on myself for being stupid. It was all my fault because I’d naively put myself in those situations.
Here’s the thing I struggle with. It’s difficult to see myself as a victim because I feel an enormous depth of shame in what I see as being stupid and naïve. But I also believe, now more than ever, that my autism played a significant part in the construction of who I was, in terms of putting on a performance or persona. If I had had a stronger sense of self and identity and friendship and social connection, I think I would have been much less likely to develop constant inauthentic friendships in a desperate attempt to define myself socially. Yes, I would have probably been just as influenced by pop culture as young girls are today, but there is a sense of grounded self that did not come inherently for me as an Aspie. I filled this void in myself with ideas and ideals that I backed up with my behavior, only to realize that nothing but emptiness comes from emptiness, and that those personas were indeed hollow from the beginning.
There is a related observation from the article that resonated with me, and I do believe that this preoccupation with personifying women like Brittany Spears was an actual “special interest” for me, or what I like to call “obsessions.”
“Reported interests varied enormously, from animals to international boat racing, from sexuality, physics and The Middle East to autism and events organising and provided them with structure and a sense of achievement:
‘It’s very good…for my self-belief, to see that I can do something that’s recognised by other people as beneficial and productive (P04).’
Therefore, instead of relying on common social norms, such as sociability or motherhood, to define themselves, young women formed their identities through their special interests.”
This really nails the sensation of identity I felt through competition in high school and through college. I’d started dancing and competing in high school and seamlessly transferred this system of competition to the social world because it made sense to me. This system of impressing people, specifically boys, through behavior modeled after women who were already established as sex symbols fed an ego and sense of self that had not been nourished through typical social connections through authentic friendship or loving relationships.
So, yes, I was naïve and quite gullible as an adolescent and college student, but I was also autistic. And though I recognize that I made mistakes in terms of who I associated with, I also must recognize that boys taking advantage of women when they are drunk, in any way, is wrong and inexcusable.
Lastly, I want to again praise the fact that much awareness is being raised through social media and online publications for women just like me who may not find it easy to solicit support in person.
“Several women spoke of the importance of friendships that they had made or maintained using online media. Friendships with other ‘Aspie’ women from online forums were particularly important. One woman described her friends as a: ‘gang of fellow Aspie women who I think of as my family’ (P10). Some had found that their visits to online forums had increased their pride and confidence in having a diagnosis:
‘It’s a difference not a disorder…it was really helpful because it made me feel good about myself (P02).’
Other women used blogs as a way of hearing other women’s stories and sharing their own, and as a result felt accepted and understood by others who have been through similar experiences.
‘Something that I really appreciate about having the diagnosis is actually being in this club now where people talk about their experiences and having so many echoes of my own.’ (P03)”
There is something very special about the fact that I can just click the Facebook icon on my phone and instantly read tons of posts from other Aspies in groups just for autistic adults, and I definitely recommend searching and joining one if you are looking for support or just someone to talk to who may actually understand things from your perspective. I’ve recently discovered Spectrum Women, an online publication, and the editors have recently published a book documenting various stories shared by autistic women. (I’ve just ordered my copy and can’t wait to read it!)
If you know of an online publication or group that others may find helpful, I’d love to hear from you about them so that I may add them to the Resources page.
I’ll leave you with a final thought from the article. Have a great week!
“To our knowledge, this is the first study to specifically investigate the experiences of late-diagnosed females with ASC, and we believe that our inductive, in-depth approach has generated some new insights into the female autism phenotype and its impact upon risk of missed diagnosis.”