This may just be my opinion — or it could be the tip of the iceberg on a much grander scale. But I really feel that the autism awareness campaign that’s been going on for the last 10 or so years hasn’t accomplished much. I may even be going so far as to call it a failure.
Why? Well, since my oldest was diagnosed on the spectrum about a decade ago, I’ve still had to (repeatedly) inform several of his teachers/guidance counselors/school psychologists/social workers of what this actually means. They don’t understand the real life implications of altered sensory perception, or heightened/decreased emotional responses, or for-the-love-of-pete-just-leave-me-alone moments. A lot of people don’t comprehend what’s beneath the labels.
It certainly didn’t help me to realize that I’m on the spectrum myself. It took me reading a memoir written by a woman with Asperger’s for all the pieces to fall into place.
So, why has all this momentum towards education on autism apparently fallen on deaf ears, or simply not reached people? Why am I 37 years old and still formally undiagnosed? I can’t even find a doctor or psychologist in my area who works with adults registering symptoms on the spectrum.
Well, there seem to be a few reasons. One: There simply isn’t the motivation in our society for people to learn and accept differences. Yeah, those of us who are aware of the importance of this are still shouting it from the rooftops — and I truly pray we never lose our voices, because our cause is worthy, and necessary, and we can’t give up the fight just yet.
Two: People don’t have an accurate depiction of autism. Even many of those in the know (well-informed parents, specialists, etc.) aren’t aware that this is not a “problem” we’re facing for the first time ever in the 21st century. Some of the broader-minded researchers are finding that most likely autism has been around for at least a couple of centuries, and that lots of people in our past (among them Albert Einstein and Lewis Carroll) were probably autistic, but the medical communities of their time didn’t know that, or enough about the spectrum to be able to diagnosis it. Children who are children now, on the spectrum, will 98% likely be on the spectrum their entire lives. This is not a bad thing. It’s just a fact — one that society really needs to wake up about.
Three: People don’t have an accurate perception of the people who live the spectrum. And unfortunately many people don’t want to change their ideas about autism. The idea that autism is a “medical condition” rather than a state of being is incredibly damaging. It keeps pushing stereotypes and treatments that hinder progress in areas like sensory experiences and emotional coping mechanisms, where we really could use some growth (both ASD-ers and NTs).
So, what we do about this situation? Well, I think it’s about time we started asking people with autism what we need — instead of “normal” people determining it for us. Yes, there are many very well-meaning NTs out there, who have done a whole lot to advance research and acceptance, and I don’t want to discount their efforts by any means. But we need to go further, deeper — we can’t just keep up the lip service of “differences are okay.” We need a world with empathy, with true tolerance — a world where my youngest son won’t be encouraged to think of his older brother and mother as “a condition to be fixed.”
We are human beings, too. We are just as valuable, just as needed in this civilization, on this planet. We do not fit any one human-defined category. We are varied and have different strengths and obstacles and challenges. We are not just a medical curiosity. We are people. And the rest of the world needs to start saying that.