I was diagnosed at age 34. I remember it being a mixture of relief and curiosity. I had suspected for a long time that I was autistic, but the diagnosis was the validation that I needed from years of wondering. Why was I so different? Why do I have this feeling like I don’t belong? Why does it feel like I have come from another planet…and who the heck are these weird aliens that I’m stuck with, called other people?
For the first time in my life it was like the light had finally been switched on and I could begin to see things around me. Everything up to this point, that had not made any sense at all, now finally made some sort of sense! I was normal and mostly everyone else was a weird, foreign alien! Whew!
Seeking a diagnosis of Autism Spectrum Disorder or ASD for girls and women is extremely difficult and is grounded in the sustained history of medical inequality and invisibility of women. The unique characteristics of ASD in women and girls is different to boys and men with ASD. Yet the ADOS assessment – the official assessment for ASD diagnosis – is based on symptoms and characteristics in boys and men since it was first created. Girls and women are once again forgotten, invisible and left excluded from the conversation.
There are thousands of women, like me, who finally receive their diagnosis between the ages of 30 and 60. Thankfully, I was in a financial position to be able to afford the expensive testing process. Unfortunately, many women are not in this situation and identify as self-diagnosed.
Currently, there is a 4:1 ratio of boys to girls who receive a diagnosis worldwide. This is not a male dominated disability or diffability (as some autistic people prefer to call it),….the assessments, tools, research and practitioners who are entrusted with diagnosis, have excluded the symptoms in girls and women for a very long time. Thankfully, autistic women in the community are starting to speak up and demand change!
Upon receiving my official diagnosis, I was told that autistic people are highly sensitive with an abundance of empathy…quite the opposite of the common stereotype linked to populist articles on ASD. The practitioner advised me that autistic people had so much empathy and that they processed and communicated emotions differently. She told me something that changed my way of thinking about emotions: One way autistic people can process their emotions is in a literal sense, through the immediate verbal expression. There are multiple ways in which autistic people process their emotions, however, it had never dawned on me that there are as many ways to process emotions as there are stars in the sky!
This made me think about how I process my own emotions. It’s like my body speaks a different langauge to what all other neurotypical people speak and that I’ve been taught the wrong language for my own internal language of emotion. I feel things…but it’s in a different language and I am now learning that language. That’s probably the best way to describe it!
The other annoying stereotypes which I would like to write about more later are these three, but I would like to address them briefly below:
- Black and White thinking only
- Not being able to read body language or people
- Not being able to be social or fit in socially
Black and white thinking – for some reason many neurotypical people think that autistic people can only think in black and white. To them, there’s no grey for us. It’s irony that this rigid view held by many neurotypical people is well, rigid and inflexible…aka black and white thinking! Yes, some autistic people favour and are more naturally inclined to logic. Does that mean that we cannot think in the grey? And that we can’t be good at it? Hell no! Some of us learn it better and are better at the grey than neurotypicals. We can be good at many things…logic and thinking in the grey, pink, purple, orange, you name it!
Not being able to read body language or people – ugh, this again! Yes, some autistic people struggle to read body language. Some are incredibly perceptive to subtle body language changes that others don’t pick up on. Is it starting to sound like no two autistic people are the same? Yes? Good! Let’s continue…
Not being able to be social or fit in socially – hold my drink! I am perfectly able to be social and fit in socially. I work in a busy office with…people. I go out with…people. Do I like being social? Well yes and no. I only like being social when I feel like being social. I’ll go out to see 1 friend at a time. I have a maximum of 1 best friend and 2 close friends. Any more is challenging my quota and I have no idea how people can keep up with more friends than that. Can I fake it at work and pretend to be neurotypical-ish? Yes. I do it every day.
What I am getting at…is everything you think you know about autism, is based on a recycled one-size-fits-all stereotype. The autistic space for women is growing and so too, are their voices. Hear us roar…differently!