Autism is a complex ‘syndrome’, not a disability in the common, observable sense, though some on the spectrum exhibit definitely observable traits. Is it a disability or an evolution, a reflection on the inability to learn in a ‘sociably acceptable’ manner or on our inability to teach in a neuro-diverse society?
As an ‘autistic parent’, especially as a man, there is a tendency to want to ‘fix things’, to make that breakthrough that puts your child onto a more neuro-typical path. You observe the flashes of brilliance and wrack your brain trying to find ways to make that the norm, knowing in your heart of hearts there lives an extremely bright child just waiting to blossom into someone you can be proud of in a neuro-typical way. Don’t get me wrong, I am proud of my son EVERY day, in EVERY way, but there is some frustration, reflecting perhaps on our own egos and feelings of self-worth as a parent. Yes my son has issues tying his shoes, and yet he is a gifted artist, amazing distance runner and totally committed to journalling the facts he finds interesting on the Net (not to mention the fact he is MUCH faster than I am ‘Googling’ information – no mean feat!).
As an autistic parent you wade through reams of studies, government paperwork and general red tape just trying to get the basic services you need to support your child. I can be tiring, just ask my wife! But you are driven to be the best parent you can be and the mini victories make the hours of effort worth it!
A big part of being an autistic parent is learning what you are dealing with, what autism really is, why it affects 1 in 68 children, and most importantly what you can do as a parent to nurture your child. There are a number of experts we lean on for advice, Dr. Simon Baron Cohen (yes, the cousin of Sasha Baron Cohen!) and Temple Grandin come quickly to mind. But sometimes even they need to be ‘decoded’.
And that is where Steve Silberman comes in.
I could go on at length about his CV, achievements and awards, but I think he is best described as ‘A beautiful man who wrote the seminal work on autism in the 2000’s ‘Neurotribes’ while expounding on David Crosby and The Grateful Dead!’. In plain, layman’s terms he had the ability to explain autism in terms we could relate to. And if you followed him on Twitter / X he was both deeply insightful with a puckish sense of humour. Truly it was a joy to follow him for many years! Below is a link to a TED talk he gave back in 2015, definitely worth the time to watch!
Steve Silberman passed away Wednesday at the age of 66… He will be missed. 🙁 🙁