It is impossible to describe being autistic – perhaps largely because it is impossible to fully quantify it. At 19, after a childhood feeling only a misfit, I was told I was autistic. I didn’t want to hear it. Frankly it meant little at that time, since there was little reference material to read, and no wealth of resources on the Internet as there is now. I ignored the diagnosis. I did not want a label, and was not offered any help in dealing with it, so it was meaningless to me.
Each time I heard that diagnosis again – several more times – it was again offered with no assistance, little explanation, and with an apparent stigma attached to it. I was “autistic” – less than normal, less than human, broken. It confirmed my mother’s stated impressions of me as a millstone – yet offered no hope, no way out. It is laughable to me when I hear now of my diagnosis as being an excuse, an easy way out. There is nothing easy about being autistic, and the diagnosis offered no relief from the associated problems. It offered only a starting point. One that came far too late, and with too little associated direction. Once I finally believed it, my response was basically “Ok, so I get it, I’m autistic. Now what?” Years later, the “now what” largely remains.
I have read so much within the past few years about being autistic. I identify with pretty much all of what it says about autistic females – where there is still little data and few resources for girls with autism – and even less for grown women. But still it leaves so many questions – so who exactly would I be, if there were such a thing as me, but not autistic? What issues would I still have? What would I have lost? For certainly there are good things I have gained from being all of who I am – autistic and everything. But what can I attribute to autism, and what is just me… or is there even a “me” without autism?
I have used the analogy of feeling like a Newfoundland puppy. (I was a dog fanatic as a child, and even wrote a book on dogs for children, that only ended up in a trash can because nobody took interest in it). The Newfoundland is a great dog – smart and loyal. But a Newfoundland puppy is large and ungainly, potentially overwhelming, with a big slobbery tongue and too much love. I had heard there was no such thing as too much love, but felt that me and Newfoundland puppies knew differently.
For years I struggled with all the things I hated about me. And once I found out I was autistic, there was the natural tendency to “blame” all those things on the autism piece of me – and as such hate the diagnosis. But then as I learned to appreciate the good in myself, the question arose that as much as I blamed autism for my struggles, perhaps I also needed to credit it for my strengths and qualities. Is my attention to detail a gift of being autistic? Can I thank autism for the enjoyment I get in watching people – in the fact that I notice and thrive on finding good in everyone? Can I thank autism for dogged hope, for the fact that I never want to give up – that slapped once and again and yet again, that I get back up and move forward, never wanting to believe that I should not.
I cannot explain being autistic. Even as an author, I find it impossible to describe. Likely because, as I said – I have no reference point as to who I would be without autism. I know that my life has had difficulty. But then again it has had joy. I have been described as an emotional roller-coaster, for as certainly as my lows may be low, my highs are often stratospheric. I would have it no other way. Newfoundland puppy and all, I would not wish away who I am.