Just a note before we begin: I’m distinguishing between Asperger’s and Autism, because I’m an American, and culturally the understanding here is that Asperger’s is more (cringe) “high-functioning”, more verbal, less debilitating, and requiring significantly fewer services — possibly none at all.
Please put down your pitchforks for just a bit, while I make this clunky distinction.
Autism, as I’ll use the term here (not saying it’s correct, just this is the way I’m using it), indicates greater differences in verbalization, greater sensitivities, greater variations in behavior (considered “impairments” by experts), and requiring regular support.
There are massive conceptual and factual gaps about Asperger’s and Autism. If you talk to just about anyone on the autistic spectrum, you’ll hear stories of how they have been misunderstood, misjudged, marginalized, and set back by gaps that are rife throughout society. This is especially true of older individuals, women, girls, LGBTQIA/queer folks, people of color… anyone who isn’t a stereotypical white male under the age of 16.
The level of officially sanctioned ignorance is appalling. It’s a blight on the support systems, on the organizations that seek to help us (never mind the ones who are trying to erase us), on our culture, our society, our communities. There’s simply not enough known. And the people who purport to know, are either years behind the times, in terms of current research, or they have a purely neurotypical way of looking at things which cannot fully grasp the extent and nature of our situations.
It’s a dark and somewhat depressing state of affairs.
But rather than curse the darkness, I’m going to light some candles. I’ve come across a number of instances where researchers have commented at the dearth of first-hand information about folks with Autistic Spectrum Conditions. That’s something I can address, myself, even as just one person.
It’s something that a lot of us can help to address. There are a number of really articulate autism/Asperger’s bloggers who write on a regular basis. And there are more joining – like the new Autism Help Blog, run by a woman who knows from personal experience what it’s like to be on the spectrum and raise kids who are on the spectrum.
As many gaps and holes as there may be — many of which the neurotypical experts have no idea exist, let alone know how those gaps affect us — the situation is not lost. We can do something about it. We can write. Blogs. Books. Articles. We can make art for all to see. We can make videos for all to watch. We can get out there and make our voices heard. And the more we do it, the more focused and adept we can become. We need a bit more polish, in some places, to really make our points. But that comes with practice. It comes with just doing things over and over again — as we are prone to do — and refining as we go. Keeping our standards high.
And as we do all that, we can bring the researchers and aspiring helpers into the conversation. A lot of them want to know more. And they are open to hearing it from us.
Just the other day, I had the opportunity to speak with a couple of new “Aspie coaches” who were so hungry to learn about us and what we needed to be more effective in our lives. They took notes. They were so hungry for information. They even cried… which was a little confusing and made me sad to see. Tears weren’t necessary. At least, not for me.
Yes, there’s a lot of ignorance — willful and aggressive ignorance. There are people who want to make sure we don’t continue to exist. And there are massive gaps in understanding and knowledge that harm a lot of us because they perpetuate so much ignorance, prejudice and bias.
But I believe that we on the Autism Spectrum are in a fantastic position to address all this. Online. With our blogs. Our books. Our art and videos and voices. We can make our perspectives known, our voices heard.
So, let’s do that. Let’s each light the unique candle(s) we have within us and light up this place.
Because we can.