Tag Archives: results

Why research in to autism needs to be led by autistic people.

In my last blog I talked about an article put out in the Daily Mail linking autism to radicalisation. (  https://askpergers.wordpress.com/2017/06/29/are-autistic-people-at-a-greater-risk-of-being-radicalised-my-response/ )I explained why the ideas put forward in this article are wrong, and why I think the idea behind the article itself is dangerous. I am far from the only autistic person to take issue with the article; in fact I have yet to come across an autistic person who does think positively about it. One of the issues that came up the most when I was talking to other autistic people on twitter about this article, is the lack of autistic-led research around autism.

More often than not if someone is planning a research project around autism, wants to decide which projects will get the most funding, or wants to talk to the press about autism research, that person is not autistic. Often autistic people are not even consulted in these matters. If you look at the autism and radicalstion article the team behind that admitted on twitter that they had not worked with autistic people on the idea before they published it in the press. The article came out, and met with a strong reaction from the autistic community that you imagine would have been wholley predictable had the authors just talked to a few autistic people before-hand. In fact if they had spoken to autistic people they might have decided that the research they were planning to do would not be the most helpful – or at least focusing it on terrorism would not be. Perhaps it would have ended up being a wider piece of research looking at how autistic people can often fall victim to things like so called `mate crime` where they trust someone to the point of thinking they are still friends even after that person has hurt them, or tried to push them in to doing something they know to be wrong. This is something that can impact on a growing number of autistic people, and knowing more about it, and working with the police to help them understand, might genuinely help some autistic people. But as it was we got a poorly researched article that did little more than drum up fear around an issue autistic people had not even asked anyone to look in to. I am not trying to say that non-autistic people can`t do good work around autism – they can. But if you really want to know what you`re talking about, and be taken seriously then at some point you have to talk to the real experts – autistic people.

I am not alone in thinking that if professionals and researchers would take more time to listen to what autistic people are saying, and work with us instead of trying to do what they think is best, it would be better for all involved. We see a lot of studies coming out saying things like “Making eye contact can be painful for autistic people”, to which most autistic people reply “Well yes. We have been saying this for years.”

There is a sense that autistic people can say something for years, and it not be taken seriously until a non-autistic professional says it too. As if we can’t really be trusted to know or understand how our own minds work. And at the same time if a piece of research comes out that we don’t agree with we are meant to just take it at face-value, and accept things about ourselves that we know not to be true. While research by non-autsitic people does play a part in helping us all to understand autism – and I would not want to downplay that, or make it sound as if only autistic people should be working on understanding more about autism – I do think autistic people are well within our rights to reject some findings, or directions of research. We can look back to papers published by highly respected researchers in the 1940s and 1950s that blamed `cold and unfeeling Mothers` for causing their children’s autism, and see that at times it would be silly to accept something just because it’s written in a book by a so-called `expert.`

When things like this happen it often takes professionals years to admit they got it wrong, and all this does is deepen the divide between autistic people and the non-autistic professionals, leading to a situation where time and money is being directed at arguing a case that autistic people already know is silly, just to avoid having to back down. For a more recent example of this look at how the professional world has reacted to the idea of females being autistic. For years they said females could not be, but now – even after countless women and girls have been diagnosed – some (not all) professionals are still clinging to the idea that these females must somehow be super-manly on the inside, or else how could they be autistic? Instead of just admitting they got it wrong, and trying to look at why that might be, they still cling to the idea that autism is a male thing, even when the autistic person is female. Understandably this approach does not earn those professionals a lot of respect in the autistic community

Autism is a way of thinking, a way of feeling and a way of seeing the world, and the truth is autistic people are the real experts. I am not trying to say that non-autistic people don’t have a part to play in understanding autism, and thinking of ways to help autistic people with some of the things that we do find more challenging, but I am saying this needs to be done hand-in-hand with autistic people.

Perhaps if all research around autism were to be led by autistic people – or at least take the time to talk to us and find out what we want, and how we feel about things – there would be less conflict between the autism community and professionals. And autistic people might start to feel that our voices are being listened to. Much more could be achieved if autistic people and professionals were able to work with each other instead of clashing. But for that to happen autistic people need to be given a greater role in leading research, and studies around autism.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Results day.

Students always get incredibly stressed whenever it comes to results day because whatever level of education they are in, they are told that the results they get will have a massive impact on their future life, and career.  It would be silly to suggest that results don’t have some impact on your life, but the world is full of people who tried to do one thing, couldn’t and went away and did something else very well.

Obviously you want to get the best results possible, but the important thing is not to become overly stressed with this.  Especially for people with autism; a lot of benefits that can be gained from college, and university aren’t purely academic.  Often people can become much more social, and independent when they go in to higher education, and being able to go out by themselves and communicate with others can open up more doors than simply getting an academic qualification.  It also improves self-confidence.  People can often make good friends, and have a lot of good memories from their time in education.  Obviously this isn’t the only important element, but if somebody has struggled in making friends their whole life, and they come out of college with a close group of good friends, then they are doing a very good job – and that in itself is a massive achievement for them.

For example, I got good grades in college, but just as important as my grades was the fact that I was travelling independently nearly every day, and I was able to become more sociable, and make friends.  Of course I was pleased with my grades, but I simply saw them as a way of getting in to university.  I wasn’t particularly bothered about the academic element of the course.  If I hadn’t got the grades I needed for university though, I would have been able to re-take elements of the course to try to bump my grades up, or I could have left and taken some kind of vocational course.  I could have simply dropped out of education altogether, and gone in for a different kind of work.

 It is also worth pointing out that whatever stress teachers try to put on your shoulders, at eighteen you are still a teenager, and whether you get in to university or not, will not define you, or who you can be.  It all depends on your skill-set.  If you struggle to cope in college maybe going straight in to university is not the best thing you could do – why get yourself in to all that debt, and put yourself through all that stress when there are other options out there – other training programmes, courses, and jobs that may be much better suited to you?   I took a year off after college to focus on my writing, and if I hadn’t done that I probably wouldn’t have set up this blog, made the contacts I have, or be writing for on-line magazines and newspapers now.

The idea of staying in education until you are in your early twenties is only a recent thing for the majority of people.  This doesn’t mean that it shouldn’t be taken up by anyone who wants to take it up, but no one should ever feel that it is the only option for them.  It is an option, and a good option, but the level of stress some people put themselves through when choosing this option is ridiculous – you’re still a teenager, so relax.  Even if you have to repeat a couple of years of college, and you are in your twenties when you go to university, it’s no big deal.  You are still young.  You can go to university at any time you want to in your life.  The idea of learning as much as you can by a certain age, and then going out and getting a job based on the knowledge you`ve accumulated over the past twenty one years, is redundant in today’s economy.  Anyway, education is a life-long thing.  The fact that you are not smart enough to do something aged eighteen doesn’t condemn you to a life-time of not being able to do things.  It just means that things might come a little more slowly, but you have to see the bigger picture – in forty or fifty years’ time, what will you care if you achieved something aged eighteen, or aged twenty?

There are all different kinds of education, and all different types of knowledge, and each of these can be put to use in one job or another.  Many of these forms of knowledge are not taught in colleges or universities, but that doesn’t make them, or their effect on your life, any less real.

 

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762