Welcome to my blog, Return to Innocence, a blog all about women on the spectrum and those who love them.
This past November, I finished the first draft of a memoir (Return to Innocence) which tells my personal story of being diagnosed on the spectrum at the late age of 28 and how life changed for me after. I also dedicate a lot of words to my personal testimony regarding the dangers that I faced as an Aspie in college. I know that my story won’t be exactly the same as other women’s, but I do spend a lot of time researching and talking with other women, listening to their voices.
One of the most common co-morbid conditions that seem to manifest with autism in adolescence and young adulthood is social anxiety. Social anxiety coupled with the unique characteristics of women on the spectrum can create a dangerous situation for those of us who do fine academically and get by well enough socially to enter into college without any idea of the social challenges to come. In my research, I don’t come across a lot of material that directly addresses this, so I thought sharing my personal story might be helpful.
I will be working on the book further this year and hope to publish sometime in 2020, but until then I thought I might be able to build some kind of readership online through some dedicated time and effort on this blog. I hope to cover many of the most relevant issues facing women on the spectrum today, as well as some personal stories and interviews with other writers and bloggers.
Over the next few weeks, I will be looking at an article I found recently from the Journal of Autism and Developmental Disorders called “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.)
“One proposed explanation of the ascertainment bias against females with ASC is that there is a female autism phenotype; a female-specific manifestation of autistic strengths and difficulties, which fits imperfectly with current, male-based conceptualisations of ASC…”
The article describes a study conducted in the UK in recent years, and there are several mentions within the article about it being one of the first studies of its kind to truly start digging in to the unique female autism experience. This tells you just how new this type of research is, and it is both exciting and nerve-wracking to feel myself as part of this movement toward understanding in neurodiversity, and as a unique voice sharing my experiences with traits that never had a chance of diagnosis when I was little. This is because most of the diagnostic criteria were developed from specifically male-based evidence and observations. I’m comforted as I search for support online for women and find many groups forming on their own through social media which are actively serving as a safe haven for women who have lived many years of their adult lives before having been diagnosed, either through their autistic children or their own research.
This week I wanted to start with the above quote from the article and share with you some of the things that, if you have done any research yourself, will be quite familiar as some of the core differences you see as signifiers in terms of ASD in females.
Predominantly, the one to pop up as the most accepted and widespread is the concept of female Aspies’ ability to “camouflage” in social settings. When I am in a group of people, I am on high alert and hypersensitive to the behaviors going on around me. I will mirror personalities and play off of them as they feed me material. I download that material and instantly connect it to situations I’ve experienced either in real life or through a movie or TV show and use what I’ve learned is both appropriate and entertaining. If I get a good reaction, then I know I was correct. Every now and then, I get a weird look or someone points out that what I said was mean or blunt or rude, and I will catalog that experience and usually learn to just stay quiet instead of trying something new in the next situation. It is common for me to fall all but completely silent in groups of more than three. This happens for many reasons, but the biggest reason is that it becomes very hard to follow multiple conversations among people, and it takes me a bit longer to process what is being said. By the time I think of something I might say, the conversation has moved on. I also have to expend energy staying alert so that I am ready if and when I am personally addressed in the conversation.
Another common difference is that women may not have the same obvious behaviors that boys do which stick out and signal to the parent, teacher or psychologist that there may be something going on. Boys’ fixation on stranger, out-of-the-ordinary hobbies and tendencies to stim in obviously different ways are just a couple of examples. Young girls also often internalize their emotional struggles or behaviors and may be quite reserved in their group settings, which follows naturally into being a “shy young girl,” a category in which I was solidly placed early on. Young girls’ autistic fixations are often more “normal” looking than boys’. Not many parents may pick up on the fact that not only does their daughter love dolls more than anything, but she also must line them up just so every single morning, etc.
The good news here is that professionals, and not just Aspies who are discovering themselves as adults, are beginning to realize the need for independent research with regard to females on the spectrum, and hopefully we are on our way to some significant improvement and progress in terms of support after diagnosis. It does seem to me in my research that the UK is way ahead of the US as far as advocacy and support for those on the spectrum in general. Every time I Google support groups or information on women with autism, I’d say 90% of the time I end up on a UK web page. This is great news for individuals over there; I do hope we can catch up soon here in the US!
Once again, I want to thank you for reading and hope you come back each week. I am very open to any suggestions or feedback on the blog; maybe there is a topic you are personally interested in that you don’t see getting looked at very often. Send me an email at firstname.lastname@example.org or through the contact form to get in touch. Have a great week, and Happy New Year!!