I’m going to stick my (personal) neck out and speculate a bit. And I apologize ahead of time for thinking out loud. It’s one of my processing techniques, for bad or good….
If the latest Korean study, or the one in Massachusetts, are even close, there are a lot more autistics than 1 in 100. In the US, that would be about 3 million. If those studies are indicative, there are more like 6 - 9 million. Taking into account even a conservative percentage of undiagnosed, unwitting Aspergers, like those who can work and raise families but are miserable or just confused as to what makes it so hard to succeed to the degrees their neighbors do, and we could realistically be talking about 10 million autistics in the US alone.
Original figures I remember - correct me if you have citations - put severe autistics at about 25 - 50 percent of the original estimations. That’s in the 1.5 million range, I think. That would mean it’s possible that there are about 8 million autistics in the US who are reachable, treatable, educable, and able to make use of whatever help we can provide to excel and contribute.
If we look at it another way, and assume we can put all autistics on a bell curve according to severity, a couple thoughts occur. First, is there a fairly large number of severe autistics Who are far enough along toward the right side of the curve to warrant reexamining their communication options and try harder to get them keyboards, picture-based systems, and whatever we can find to help them communicate better? I am not confident that, once you’ve been seen as non-verbal or intellectually disabled, anyone is revisiting your situation on a regular basis to see if new technology or techniques or your natural development have changed things.
Second, assuming that the number of autistics on the right side - who need virtually no help or services - roughly matches the group of severe autistics on the left who we just can’t reach, given current technique, then the vast majority of autistics are people who really need us to stop bickering about who has how much and what kind of autism. The vast majority need us to find them, communicate with them, educate them, treat their co-morbidities, help them find productive employment, and find them a dignified, safe, supported place to live.
I’ll be the first to admit that I’ve never left a math teacher un-dismayed. But even I can see that, once you stop trying to shove autistics into categories like HFA vs LFA or autistic vs aspie or verbal vs non-verbal or mild vs severe, you end up with Those We Can’t Help or Don’t Need It vs The Rest. And The Rest is a huge chunk of millions of autistics - the majority of autistics. And it’s a group that rivals, in size, many other ethnic, religious, political and disabled minority groups - none of which would tolerate the kind of treatment autistics get everyday.
Autistic numbers are roughly similar to those for the vision-impaired and hard-of-hearing. I think it would fly like a lead balloon if we decided that large print books were an undeserved waste of resources because they weren’t going to REAL blind people. Or if we only allowed REALLY deaf people to turn on closed captioning on their television sets.
I see all these qualifiers, adjectives and medical labels as a major roadblock to the civil rights of all autistics. And useless as well. They don’t help us in any real way I can see. They may determine how much Medicaid you get, or what programs you qualify for, but they also lock you out of services you might need and insurance reimbursements you need. Labels don’t help you grow and develop. They are simply convenient for your handlers.
Doesn’t sound like patient-centered medicine to me.
When it comes to finding our place in the world as fully participating citizens despite being a minority, we need to drop the medical labels and the adjectives of convenience and simply find help for those who need it, a voice (any voice) for those who want to speak, and stop trying to sort people into boxes that do them very little good.
Look. An autistic is someone whose brain and nervous system works in different and unpredictable ways. Is it really important to group them into arbitrary categories based on how they appear to us? At best our diagnostic tools only list the results of the effects of the interactions of the differences we think are there. So much for medical labels. How about we simply acknowledge what we’re pretty sure about: autistics have challenging nervous systems. There are a wide variety of issues they may have to contend with, and they may need help - lots or little - in order to get past the challenges and lead a satisfying life that can enrich those around them. And it is always - always - a bad idea to slap a tag on them and throw them away.
Tags: labels, Millions, naming, unnaming
