What follows is not formal research. It's very interesting, though. On social media, one can ask questions of those who happen to be reading what you're writing, on that particular platform, e.g. Twitter.
These polls can show some intriguing results, especially for considering what autistic people might like in their lives. Few ask us.
There is often an assumption that we must consider ourselves to be broken, in need of fixing. Desperate to be normalised. Keen to only 'speak' the social communication language of non-autistic people, never our own natural language. Are these things actually true, though?
Formal research is important, but nearly all of it keeps focusing on the belief that we're broken. So, it's not helpful for most of us, at all. Exceptions apply.
Let's have a look at what some of the polls show.
Here's our first one. Do autistic people generally care what happens to other people in our lives? 949 votes. Huge amount said yes, they do.
A sobering one, next. The alleged 'gold standard' of autism compliance-training (such as Applied Behaviour Analysis and forms of Positive Behaviour Support) involves taking a child's favourite things away to use as bribery to get them to appear to be 'normal'. Usually, to disguise distress, pain and exhaustion, stop using vital repetitive behaviour, and comply with anything they are told to do. This has been regarded as a really good thing. Let's look at whether autistic people think about this:
So, that's just under 1000 votes, the vast majority choosing 'traumatised' rather than very upset or a bit upset, or unbothered. I see it done to adults in care, also, who have to sit in empty rooms, with every possession removed.
If you're not feeling worried about what's been going on, well, you should be. What on earth has been happening to the autistic people? Original thread on Twitter and many comments under it - here: https://twitter.com/AnnMemmott/status/1322089326533087232
Big number answering regarding their views of Applied Behaviour Analysis: Nearly every one of the thousand autistic people answering this said they thought it wasn't helpful for autistic people.
OK, next, with 1468 votes, whether autistic people want people to experiment on children using drugs to see if it normalises their social skills. Strongly no.
Let's look again at the 'official' way to treat autistic people in care settings and secure hospitals, which is called Positive Behaviour Support (PBS).
649 votes. Taking out those that said 'just shown the results', three quarters of the people responding said no, they did not want autistic people to receive PBS.
So, why is it the standard approach? It's as if few people ever asks autistic people about things.
It appears that only 15 out of every 100 autistic people has a learning disability. https://bmjopen.bmj.com/content/9/8/e029040.full?fbclid=IwAR1c5qMgMj5JQlXpVb7SNTAEybf6WZnih34Fhunfa1pCvWCx0pbU6aHINMc
We get this question a lot. Some parents and groups have gotten themselves convinced that the word 'equality' means 'no equality for their child', which is weird. So I asked if we support human rights for all autistic people. Here's the result. Again, hundreds of votes on this poll. Just about every single person supported human rights for all. Neurodiversity equality means exactly that. We want equal human rights for all autistic people. Simple, really. There are a handful of autistic people who believe they are superior to other people. Those are Supremacists, not neurodiversity supporters. Supremacists exist in every part of society and aren't an autism-thing.
What about the environment? One study recently alleged that we don't do enough for the planet, and might want to have therapy to make us better citizens. No, I'm not inventing that. Unfortunately their research method forgot to ask actual autistic people, and forgot to ask what we actually do about it. An easy mistake to make, I'm sure. Original twitter link to this
This poll showed that nearly every autistic voter said yes, they care about the planet's environment.
What about a sense of humour? Lots of researchers claim we don't have one. It's never been clear why. So I asked autistic people. About 4000 people interacting with it. Do autistic people lack a sense of humour? No. In fact, I can safely say that I know hundreds of autistic people whose sense of humour is absolutely brilliant. Different to that of others, perhaps.
There's plenty more polls and surveys from autistic people. As I say, I wish there was indeed more research happening that asked autistic people what we want for our own lives. We're not the possessions of other people. We have our own Human Rights, including the right to our own identity.
What I'd like is for research teams to have a read, have a think, look hard at what they're doing, and challenge themselves. Is this what autistic people actually want? What information have I been given, and is it actually true, or was it based on ancient info gathered from a group of young men with high support needs? Have people always just assumed this approach is OK, because someone with a clipboard or a book contract told them so?
Always work as equals with autistic specialists and advisers. It's a good way to ensure that you are respecting autistic lives, cultures and communication patterns. And, most importantly, valuing what we want from our lives.
Thank you for reading.
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for more of the modern research that changes most of what we thought we knew about autism