One of the common threads that run through the stories of women on the autism spectrum – many of whom receive their diagnosis late in life, often following a long and hard struggle to fit in – is that they are not believed, their diagnosis not accepted.
In many places it´s also difficult for women to receive a diagnosis due to prejudice among professionals, mainly owing to the strong male bias dominating the field of autistic studies ever since its first description.
Luckily, I have not experienced this firsthand. I´ve generally been met with good support and a positive attitude, not to mention the positive response this blog has received, as well as my willingness to tell my story in public. For that I am very grateful.
Sometimes I´ve even wondered if the disclosure of my diagnosis may have been a bit like when George Michael came out as gay – like, yeah, well, everyone knew that…
But anyhow, what people say to you isn´t always the same as what they say about you. As I have written about before, rumors and gossip incredibly often pass right by me, maybe as the result of avoiding small-talk. Which most of the time is just fine.
Am I maybe pretending to be autistic?
Apparently there are people out there who think I am.
After chewing on that fact for some time, I´ve decided that I am absolutely fine with that. As they say: what other people think about you is none of your business.
A woman´s journey towards an autism diagnosis is rarely short or straight. Which is precisely why I speak openly about mine. My preamble, my result and hopefully – sometime – my solution. Autism is not an obvious answer, there are very few who have the knowledge and even fewer who guide you in the right direction.
The journey to my diagnosis can be divided into a few sections. Going backwards from now, the shortest and most recent leg of the journey is the one starting with the first suspicion of being on the autism spectrum and ending with seeking, and receiving, a professional diagnosis.
Before that there was a longer period of awareness of the spectrum, learning from a parent´s perspective and doing my best to be a well-informed and supporting mom.
Before that there was a lifetime of different chapters, success mixed with distress, optimism and anxiety. All kinds of everything.
Adult diagnosis of autism is in my mind a very personal journey, initiated by each individual and on their own terms. A way to get to know yourself, learning how to deal with yourself, as well as other people. If and how we disclose our diagnoses will then decide if they also become a tool for other people to learn to interact with us.
I chose to speak openly about my diagnosis right from the start, which has a lot to do with my personal character, but also with my position in life at the time.
People often ask me what they should do in case they suspect that someone might be on the autism spectrum. Should they encourage them to seek a diagnosis? Point out this possibility? I’m not sure if there´s a simple answer to that question, a one-size-fits-all, as I´ve known of both good and bad experiences with pushing someone (an adult) to pursue an autism diagnosis.
My way of making people aware of the possibility of autism is to provide information. To tell stories and openly share my experience in the hope of opening some eyes. Not to try to correct people, fix them in any way or prove a point, but rather to widen the horizon and try to create more understanding. The strongest and most honest way to do that is in my opinion to use my own story. My point of view is only one in a million, but I am the owner of my own story and therefore have the right to share it.
On your own terms
My thoughts on whether to feel anything about other people´s opinions (if indeed they have any) can be summed up like this: An autism diagnosis is each individual´s matter, personal and privately owned. This is my diagnosis, it took me a long time to find it and I hold it very dear.
For me it was a puzzle that was missing, a screw that was loose. I can choose whether to talk about it or not, and would probably do much less of that if it didn´t form part of a bigger picture. The big picture of women and girls on the autism spectrum not being heard, lacking a voice.
In time I hope these lines that I am singing, in my own voice, will form part of a much bigger choir, in a tune much better known.