Tag Archives: university

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

Why I`ve decided to take a year out of university ….

I was due to start my second year doing film studies at university at the end of this month, but I have decided to take a year out.  There are two main ressens for this.  One is my work. I wanted more time to work on my writing, and autism talks than I would have got if I was going in to the second year of a university degree.  And the second reason is that the last five or so months have been so stressful, and full of difficult things that I need a break.  But underpinning all of that is why my autism affected my time at  university.

I have to say I got a lot of help when I first enrolled, and I can’t fault my university for the way they have helped with both my autism, and dyslexia since classes began.  But I think my conditions still made my time there harder than it would otherwise have been.  I don’t drive so to get from my house to my university I have to get two trams.  This is OK when I am traveling mid-morning to mid-afternoon, but when the lecture does not end until five, or starts at nine I ended up traveling right in the middle of rush hour.  As the year went on it became harder and harder to do both the traveling, and the lectures in the same day.  If I had a three hour class the last thing I wanted was to get straight on to a packed tram, and have to fight my way off only to get on to an even more packed tram.  And if I had got on the two busy trams in the morning I felt too overloaded to be able to pay close attention to my class.  I also found it hard to balance my university with my autism-related work.  My aim is to one day make a living from my writing so I feel that it is something I need to put a lot of time in to in order to make this happen.  But I found that even in my first year I was expected to do so much reading and work out side of the class room that it ate in to my time for writing, and planning talks. Now I do feel that if the traveling, and overload after class had not been an issue this might have been OK.  But once I had been to a class I found it hard to do anything else that day, and if I knew I had to go out to a class I found it hard to do anything in the time leading up to that.  This meant that three days of the week were spent doing nothing, but being in university. Add to that the fact that each class came with a group project that meant you had to come in on other days, and meet up with your group.   I felt I had hardly any time at all to do what I think of as my real work.

So in the end I decided to take a year out. I want to take some time to relax, and try and de- stress, but I also want to use this time to work, and write a few more books.  It took me a while to decide, but I feel now that I made the right decision.

University:

The last few months have been very difficult, but now everything is finally sorted out for university.  After months of phone calls, meetings, assessments and providing evidence I finally have a grant, along with all the support that I will need in my course.  Although I haven’t started the proper course yet, and have only been doing introductory parts of it, it is still evident that the things we fought for will come in very useful throughout the three years that I will be at the university.  I don’t have a huge amount to say in this blog, the main point that I wanted to make is that there is no real way to make this simple – it can be very difficult getting the help and support needed for university.  But I also firmly believe that it is well worth it.  Some universities are very good and services will go through without any hitches, so don’t automatically think that you will have a very hard time getting what you need before you can attend university.  I have already talked in my blogs about how difficult it has been, so there is no need to go in to too much detail here.  The main thing to remember though, if the process is difficult, is that it is worth sticking to it.  For us it seemed that at every turn something new was coming up, that threw-up a whole wave of other problems.  But at no point did I ever feel that I wouldn’t get to university, or that it would be worth quitting, and not going.  In fact I felt the opposite; that because it was so difficult to get there it would be worth perusing even more.  Nothing should be off limits to people who have disabilities, and unfortunately I do know of people who have quit half way through the process, and dropped out of university because of how difficult it was to obtain the support they needed.  I would never have a go at them, or say they had done the wrong thing because everybody obviously have the right to choose what they do in their own life. But it is a pity that they felt they were denied the opportunity to a further education because their disabilities were not catered for.

Obviously I have no idea how I will find the next three years at university – it might be good or it might be bad, to put it simply. But the simple fact that I was able to go, and to get all the help and support that I need, which for a long time it looked as if I would not, feels like an achievement in itself.  I know this blog is very short, but now I am adjusting to university I hope to get back in to the routine of putting one up every week or two.  If there are any particular issue you would like me to talk about please let me know below in the comments or on Twitter or Facebook.

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

University help.

I wrote a blog a little while ago about how stressful, and difficult I was finding the process of getting support for my autism, dyspraxia and dyslexia at university.  The process has actually become more difficult as it’s gone on. I mentioned that despite having official diagnoses of Autism, dyslexia, and dyspraxia I still had to go back and be re-tested because these were diagnosed before I was sixteen – despite being life-long conditions.  I went for this assessment recently.   It was supposed to be for approximately an hour and a half, but I ended up being there for nearly two and half hours.  I have to say the entire experience was unpleasant, and above all unnecessary. First of all I resented having to be tested at all, considering I had indisputable proof that I have these conditions.  But rather than sitting down and simply asking me what I needed help with, and then getting on and helping me, it was almost as if I had to go through the whole process of being diagnosed again, simply to get the support I am entitled to.  They said that the tests were to see if I still had dyslexia and dyspraxia, or if I had a specific learning disability. I have to say this confused me because I always thought dyslexia and dyspraxia were specific learning disabilities. But to tell the truth, it wasn’t even the pointlessness of the situation that annoyed me the most, it was two other things: the first one being the embarrassment factor – the fact is tests like this are designed so that you`ll fail them, and they keep going until you do fail. So this in itself, by its very nature, is embarrassing – a complete stranger testing you on stuff until you finally fail.   But for me, I simply felt that the entire thing made me look much less intelligent than I actually am.  I was first published when I was twelve, and currently write for three on-line newspapers as well as this blog. I know my handwriting and spelling are poor, and this is one of the first things I told them, but the results of the test seemed to imply that I couldn’t read out loud, have a poor grasp of language, and I was told I need to read a lot more – when in fact I have been reading fluently since I was three, and always have at least two or three books on the go. In fact I`ve read more than anyone I know of my age. I’ve also been writing in one form or another – even if it is simply dictating the words – virtually every day since the age of eleven. Which leads me on to my second point; this was a test for dyslexia and dyspraxia, but I don’t feel my autism was taken in to account in any way, shape or form.   I was somewhere I`d never been before, with somebody I`d never met.  I wasn’t told what order the tests would be taking place in, or even specifically which tests would be happening.  As I said the test took an hour longer than I was told it would take, so I was unprepared for this. By the time we started to get to the halfway point – due to my autism – I was finding it incredibly hard to concentrate on what was going on. Therefore, things that I would have ordinarily found simple, such as reading certain words, proved impossible, simply because I couldn’t focus on what I was supposed to be doing.  This got worse as the test went on, to the point where I could barely even attempt some of the tasks that were supposed to be measuring my dyslexia, because of how bad the symptoms of my autism had become.  I don’t know how these kind of tests are for other people, or what others might have gone through to get help at university, but overall I am disappointed with the process so far. It reminds me much more of school – where you have to fight for even the most basic assistance – than college, where help was given freely to me. Also, making somebody pay to be retested for something they`ve lived with their whole life is ridiculous; if I go up to somebody and say that I have dyslexia, and I have a certificate from the Dyslexia Association confirming this, and I’ve had help and support for it from professionals as recently as last year in college, why should I then have to pay, and go through the process of a stressful reassessment simply so that they are happy with what I am saying to them?   If I have proof of something, and they don’t believe it, surely it’s up to them to come to me, and prove that I am wrong rather than me having to prove that I’m right.  I fully understand the concept of having to check what somebody`s specific needs are to give them the correct help, but it is a pity that people who work at such a high level don’t seem to understand that the best way to find out what somebody with a disability needs is to go ahead and ask them, and then to provide it.  Accommodating my needs is their job. Why should I have to jump through hoops before they will start doing it? I`m sure a lot of other people with conditions such as autism would feel the same way if they were in the position I`m in.  And this is what irritates me the most,  the fact that it has taken such a ridiculously long time – we had appointments so that we could talk about a form that they would send to me to fill out, and send back to them so they could send it to somebody else, so that I could meet with them and do a test, the results of which would be sent to somebody else who I would then meet with, so that they could tell me who I could meet with to actually answer the questions I`d asked in my very first meeting – when really, in my view what should have happened is I should have gone along to one meeting with the evidence I already have of my conditions, they should have told me what support they could offer, and listened to what I was saying I needed. We would have decided on mutually agreeable terms, drawn up a small programme which they then would have put in to place, and that would have been the end of the matter.  As it is, I`m just under two months away from starting university, and am still no nearer knowing if they will accept my diagnoses of autism, dyslexia and dyspraxia, than I was when I began this process five months ago.   I am not singling out any particular individuals for criticism, it’s just the way the system is set up in general.  It`s as if somebody sat down and said ‘how can we make the process of somebody with a disability getting to university as long and time consuming as possible?`  Overall, it has all been a bit of a shambles.

My name is Paddy-Joe Moran. I am a 19 year old autistic author of two books, and co-founder of autism advice service ASK-PERGERS?If you need any more help or advice about Asperger`s, or simply want to talk about it check out my free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

Also to read more from me go to my blog https://askpergers.wordpress.com/

And have a look at my books (at the time published under pseudonyms, but I did co-write them trust me on that!)   http://www.jkp.com/catalogue/book/9781843106227

http://www.jkp.com/catalogue/book/9781849052757

 

 

Help with autism for University.

Over the past few months I have been preparing to start university.  Because I have been on a gap year since finishing college I`m having to sort out a lot of things with the university without the help of the college.  One of the major issues we`ve had to sort out is what help and support I am entitled to.  I have Autism, Dyslexia and Dyspraxia, and therefore it is reasonable to assume I might need a fair bit of help in university.  The problem that I have found isn’t so much that there isn’t help available – I just take issue with the process you have to go through to get it.  The main problem I have is that you are expected to provide a post-sixteen diagnostic assessment of anything you are asking for support with.  That in itself doesn’t seem to make any sense, as all three of these issues are life-long – their diagnosis doesn’t change over time.  My diagnoses for Autism, Dyslexia and Dyspraxia have always been accepted in the past – why they become invalid when I try to apply for help from university I am not sure.  The vast majority of people are diagnosed with these things when they are under sixteen.  Initially I was asked to provide a post sixteen diagnostic assessment for all of my conditions.  This would have cost a lot of money, and also taken an incredibly long time to get done.  People can wait months, or even years for one diagnosis.  I would probably have been finished with university by the time I’d been re-diagnosed for three separate conditions!  Eventually they agreed to accept the diagnosis of Autism, but not of Dyslexia or Dyspraxia.  So we were told that I would need to go and be reassessed for Dyslexia and Dyspraxia, at a cost of three hundred pounds.  Although you get most of this back, in the long run you still end up paying seventy five pounds for a two and a half hour assessment, so somebody you have never met before can tell you a lot of stuff you already know about yourself – which you could have told them in two and a half minutes.  What I found when taking the assessment was that due to the lack of structure, or knowledge of what I was going to be asked, my autism made things that were normally quite easy for me, difficult.  As I say, it was two and a half hours with no break, and I really don’t think you can get a full assessment of my needs from that.  A much better way would have simply been to ask me what I need help with, and then to provide it.  Perhaps an assessment of what I am struggling with now would be alright, but at no time did anybody imply that was what this was – I was told it was an assessment to see if I still struggled with Dyslexia and Dyspraxia, or if I had what was referred to as a more general issue.  Now as I have said before, I am not a hundred percent sure what this means, because both these issues are life-long, but also I don’t believe it should be for the individual to prove they have a condition, when they already have all the evidence they could possibly need with a diagnosis.  Overall I think the entire process has been a lot longer, more complicated, and more stressful than it has any need to be.  I also think it shows a lack of respect for people with disabilities or learning disabilities, as it basically says that even if they come right out and tell you what they struggle with, and want you to help them with, you should do your own tests and decide what you think they need help with, and implement that instead.  Yes, evidence is obviously needed to make sure nobody claims extra time, or benefits unjustly, but why aren`t certificates of diagnosis evidence enough?  Or the words of the three professionals who have worked with me to help with my Dyslexia and Dyspraxia over the years?  Apparently they count for nothing as well.

Anyway, this blog is more of a moan than anything else, but what do you think?  Do you feel it’s fair?  What experiences have you had when trying to get support for your autism, or other issues?  Let me know in the comments below.

If you need any more help or advice about Asperger`s, 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