Recently on Facebook, someone posted:
“Much of ‘high-functioning Autism’ is dealing with people who hold you to an impossibly high standard while insulting your genius.”
Not everyone was happy. One of the administrators pointed out that the group did not “support functional labels”. But is this post supporting functional labels? Seems it is pointing out issues with them. After all, we did not create these labels – NTs did; professionals I’m sure, and well-meaning, but not autistic. Yet another example of how autistic people are left out of decision making processes that affect their lives; evidently, we can’t even control our names. That is a very powerful gesture – to name something. The act of naming can generate prestige, notoriety and success – even guaranteeing a place in the history books. In a way, once you name something, you imply both discovery and ownership of it. The name sticks. You become legendary.
I understand why some people are so against functioning labels. If there is to be a high-functioning label, then what are the others called? I don’t like where that line of reasoning is going. When I mentioned this concern to a counsellor, he explained that my “HFA” label simply implied that I was able to effectively communicate; I could discuss and explain my autism, whereas others – although experiencing the exact same issues – struggled to share their experiences. Upon reflection, it is obvious how the simple act of naming something can force wedges between people who should otherwise be working together (like us). But on the other hand, ignoring the “controversy” for the sake of argument, this was an important post; I thanked the author for it. Here’s why.
I can relate – 100%. I was just thinking about this the other day. If you’re “HFA”, you could be denied benefits but, simultaneously, struggle to find and maintain work. NTs won’t understand you and some fellow autistics may not want to hear about your struggles. So, where do you go? Who do you turn to? You continually fall between the cracks.
As a result, I feel as detached as ever. I only ever refer to myself as “autistic” because I have most of the characteristics on the ASD spectrum, and it does disable me – without question. However, I find that I always have to explain / defend my autism diagnosis to NTs, correcting their mistakes and clearing up misconceptions. It’s a wonder that I want to talk to anyone anymore! Being an adult – it’s even worst.
By far, children with autism get the lion’s share of support, assistance, understanding and media attention. Of course, this makes sense. Early intervention could guide them towards bright, productive futures. However, let’s not discount the collective power of the “autism parents” – as they are sometimes referred to in the press. Within a powerful, dramatic parent / child narrative, they successfully court social media; something I could never do. A force to reckon with, Premier Doug Ford crossed them at his peril, quickly rethinking his autism cuts and shuffling cabinet ministers as a result. Nothing wrong with that. Good on them! But, adults with autism – we are ghosts. We drift through the cracks, floating around the action. I can’t even get MPs and MPPs to acknowledge receipt of my emails, let alone initiate positive change! And, according to a Swedish study on average life expectancy of autistic adults, I only have 54 years to try initiating change – ouch!
I guess my message to “autism parents” is your children’s future may well be … ME! US! The autistic adults! We’re over here! Not waving – drowning! Gasping, dying – but somehow still alive. If there’s no future for us, what future will there be for your children?
In conclusion, does the HFA label conveniently exclude some of us from government funded assistance and resources? Is it merely a sign of NTs struggle to adjust to and manage a complex spectrum of conditions that they cannot comprehend or empathise with? Is this why they are reluctant to acknowledge autism in adults? Is the current model, focusing on children and compartmentalising people who share many of the same traits, overly simplistic? Should we all just be called “autistic”, with the same benefits extended to all? Shouldn’t WE be asked for our input on these matters? I’ll leave you to ponder these questions. But guess what my answers would be. I’ll give you a hint – I’d give the same answer each time!