As a woman on the spectrum myself, I am asked this question a lot - by others who are on the spectrum themselves, by concerned parents, partners or by diagnostic professionals who are doing their job and doing it well. And as happy as I am to see others taking the time to educate themselves on neurodivergent issues, the weight of this question weighs heavier than ever for me.
This has nothing to do with speaking as an authority on myself as a person with autism. I can happily monologue your ears off on that front. Rather, the more informed I become about autism in general, the more tentative I become on speaking on behalf of other autistic women. Before they are a woman on the spectrum, they are complex, complicated and multi-faceted people. And I am but one of them.
So I will happily answer this question in relation to my own experiences and what I have noticed in passing with other women on the spectrum, in the knowledge that it may raise more questions than it answers. The understanding of autism is changing as we speak, and like so many others, my acceptance of my own diagnosis has come about gradually and through a kind of baptism by fire. Nevertheless, let’s get stuck into what autism may be like for a woman on the spectrum.
Contents hide 1 The Elusive Diagnosis 2 The Masters of Masking 3 Making friends and keeping them 4 I am woman, hear me meltdown
The Elusive Diagnosis
This issue is a common experience of a woman with autism. Struggling in the way we do, the diagnosis often comes late, if at all, and then you can’t be sure you’ve even got the right one. Some of us are lucky enough to experience all three as the holy trinity of diagnostic malpractice.
This was true of me in any case. I was not identified as needing any help until I was twenty-five. And even then, the help I was given was for a bipolar diagnosis that wasn’t treating bipolar because…spoiler…I don’t have bipolar. One misdiagnosis is enough cause for alarm, but this has happened to other women I know on the spectrum.
It is a worrying trend when traumatic events in a woman’s life almost become cliché. I have since been correctly diagnosed with autism, ADHD and as a twice exceptional learner. There are many reasons behind a prevailing pattern of misdiagnosis in women on the autism spectrum, which will be discussed in more detail as you keep reading.
But it stands to reason that the lack of appropriate help early on in autistic women’s lives acts a precursor to many other issues they may encounter later on.
These issues which will affect them more negatively than their male counterparts from being left to fend for themselves.
The coping strategies we adopt to fit into a largely neurotypical world only help us cope for so long. Our mental health eventually catches up to us. Until then, we become….
The Masters of Masking
I myself have become something of a neurotypical group connoisseur. I spent many former years practicing exactly the right facial expressions in the mirror, matching my body language, preparing for unexpected events beforehand etc. I did everything but have fun with people who could accept me as I am.
Although in their defence I didn’t accept myself for who I was either. How could I without any knowledge or awareness of my autism?
In my own mind, I was no different neurologically than others around me. If I failed to adapt or keep up with friendships or group expectations then the only possible explanation was my own failure to match their efforts.
I am wincing in compassion for poor little Hannah as I’m typing this. What awful, unrelenting exhaustion. And it is very exhausting. What’s more, little Hannah became so good at hiding her differences that possible warning signs for teachers or parents were overlooked.
We can tick off our first reason for receiving a misdiagnosis. I had spent my childhood preparing for acceptance. Any ‘play’ was merely practice in a world not built for me.
I was proud at the time that I was so often considered ‘a quiet child’ who caused no fuss. I was proud of fooling those around me into overlooking my struggles.
I was proud of becoming invisible within the system. I was being everything a good girl should be.
Making friends and keeping them
I had duped the adults in my life. Now it was time to work on a greater challenge: Teenagers. I studied and observed other girls my own age much like Attenborough might observe local wildlife in the Serengeti.
There was a sort of pre-pubescent, hormone driven eco-system that communicated in secretive, elusive ways and from which I was excluded.
However, just because I couldn’t track the causal circuits didn’t mean I couldn’t observe the effects. I successfully affected my voice to match the same intonation and tone of my peers. Like, (flips hair) I was totally good at it.
I dressed the same. I started wearing makeup. I practiced walking in heels and willed myself to listen to tame, mind numbing pop music that gave me the same glassy eyed vacant expression I had seen in magazines.
The problem is that girls are smart. And they mature socially much faster than boys. I was never physically beaten or intimidated. It wasn’t necessary.
After being asked out by a boy I liked for the first time and realizing he had done it as a dare to impress the other girls, I wanted to punish myself more than anyone else could.
I am woman, hear me meltdown
Naturally, I couldn’t keep up this façade indefinitely. Something has to give and my mental health was the first to break ranks. You may have noticed that at no point have I mentioned what my real interests are. And growing up, nobody asked.
Values that embody ‘selflessness’ and ‘putting others first’ are thrust on women at an early age. Stick with these without asking too many questions and you’re golden. An autistic girl may go to extremes to exemplify these qualities just to avoid a witch hunt. The truth is that all women suffer with the pressure of conforming to feminine ideals.
The judgements and problems for a woman on the spectrum derive from greater social and political setbacks. Their struggles are not limited to the discomforts experienced in general by people on the spectrum.
They also encompass the added burden of being a woman in a neurotypical, patriarchal society. Autistic women’s problems are problems shared but compounded.
An autism diagnosis, once it finally arrives, can be the very first time a woman on the spectrum is given the space to discover who she really is behind the mimicry and the masking.
We spent our childhood trying to make others feel comfortable with who we were because we were rarely taught that we should be comfortable with ourselves first.
I am still learning about my autism at thirty-four years old.
My personality is still unfolding. Masking was an automatic response and is something I am still struggling to unlearn.
But I see progress.
Even if others don’t listen to or believe my experiences, I believe myself. And I certainly believe others.
If any woman, whether on the spectrum or not, tells you she is struggling, believe her.