Happy international Women's Day to all of us, especially the autistic women. Lets try and encourage ourselves, our clinicians, our educators, anyone to be aware of the huge amount of unconscious bias that is affecting and preventing the diagnose of autistic women and girls. So many times as a parent have I noticed the exact same behaviour between my children and marvelled how differently it's labelled and how much that could affect obtaining a diagnosis.
"She's shy, that's ok for a girl because of course she lacks confidence"
"Of course he doesn't talk much, he's a boy, not emotional like a girl"
"When she fights it's just a cat fight, all girls do that!"
"So he hit someone in the playground, all boys do that!"
etc, etc. Of course none of these described behaviours by themselves would be worthy of diagnosis. As a sideline to notice that your child get's frustrated and anxious about social contact and doesn't know how to react "appropriately" then they are worth bearing in mind.
In honour to some fabulous autistic women I have the pleasure of knowing in my life, some of their blogs are here. Please note that woman is not necessarily the right term to describe someone born biologically female, and that you don't have to be born female to be a woman. Especially for autistic people who rarely fit into traditional gender roles.
As a parent it's always struck me how a child's autism diagnosis is often received with grief. That seems in great contrast with Tony Attwood's advice about congratulating the child on their diagnosis. As an adult I met my own diagnosis with an amount of surprise that was quickly quashed when I realised I was arguing about the correct diagnostic label with the person attempting to diagnose me.
As an adult it's made only a positive impact to me, to understand my structured way of thinking, my social abilities, and my very real and sometimes constant sensory overwhelm. It's made me able to pick up any good book on autism and experience profound recognition, even more so than looking in a mirror. It's given me a community of fellow's, of people who get it and many, many people who are happy to be like it.
Given that a diagnosis is generally (based on many other's accounts) so positive as an adult, why is there so much despair when children are diagnosed? Why did I cry when both of my children were diagnosed even? Especially when one of them was after I had been diagnosed myself.
The second is easy to understand - I knew what was coming, I knew about the difficulties we might face getting them suitable education, the potential social hardships, etc. These may be classified as social model worries. Regardless of how fabulous I might personally think #actuallyautistic people are, I'd be missing a lot to ignore the social model disability that is pressed upon us.
Why did I cry about the first diagnosis? Simply because my child became an other. In that split second my child became a complete unknown, someone who I no longer knew their new label was "autism" and not the name I'd given them. I got given a leaflet for the National Autistic Society; for the local autism society and details of the local offer. That was it. In 6 little words "in my opinion X is autistic" my world was destroyed.
It was hugely difficult at the time as simply everything had to be re-thought. The pre-school was already on the way out as they had failed my child several times, and the diagnosis strengthened my resolve to removed my child from what I could see was a harmful environment. It certainly wasn't for all the children, but for mine, the different one it was. Communication became visual, the spoken word ditched in favour of pointing and small pictures. The need for actions to be repeated became supported and embraced and the entire timing of our life changed. Sensory needs were read up on and understood to be the hugely important things they were. I finally understood that the similarities to myself, that I had always used to dismiss the thought that anything was "wrong" with my child, well I understood that they qualified me for diagnosis too and that there really was nothing "wrong" at all.
Family life is not as easy as I've just painted, and the learning was a steep uphill curve. It still is, as the kids are the best teachers I've ever had. I was incredibly lucky though as I was aware of the social model of disability, thanks to a friend of mine who had lived and died muscular dystrophy. She continually held society to account for disabling her - she knew she was impaired, but the actual lack of ability as implied by DIS-ability was from society itself. So many simple things made her life impossibly hard - a lack of ramps, a lack of properly accessibly toilets, a lack of decent physical support to help her cook, clean and care for herself. She lived the social model and challenged what we tihnk of the medical model of disability every day of her life. For her, and many others, accepting the medical model meant accepting it was her own fault she couldn't do the things she needed to do to look after herself, she couldn't contribute meaningfully to society as she couldn't get to work and many other examples.
This is where it's vital for us a parents to receive an autism diagnosis for our children in the spirit of the social model of disability as opposed to the medical model. Medical model means looking at our child as an other, accepting they will never play with others and not asking schools/play and care setting to help develop social skills; accepting they will always be lost in their own world as opposed to entering it with them, joining their interests and encouraging them in shared joy; accepting that they will always be an other.
Diagnosis is necessary in order to get the right support in place for our children. But not because we feel sorry for them as disabled others but because we loves them as autistic individuals with a lot to give.