Tag Archives: talking

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?

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

How Sensory Overload Impacts on Autistic People Part two – The Impact on my Body.

In my last blog I talked a bit about how doing events/talks, and going to do any kind of work can have a negative impact on my mind. I explained how the build-up of anxiety, added to the lack of time to rest after an event, can leave me unable to think clearly, and how it can take me weeks to even be able to pick what film to watch and to rest, let alone be able to work or go out again. But the impact of a stress and anxiety build-up and overload is not just mental, and there is also a physical side to it. I want to use this blog to speak about that, and explain what happens and how bad the physical effects of stress, and anxiety can be.

As I said in my last blog I did three events in November, all of which included talking to an audience, one-on-one chats, and busy rooms. There were build-ups of stress beforehand, and not much time to recover afterwards. But before I talk too much about these events and their impact I would like to go back, and talk about my book launch. On the night of the launch itself I was fine. I felt good and fully expected to feel fine the next day as well. And when I woke up I did feel fine, but as the day went on I started to feel worse and worse. By around eight at night my stomach felt as if it was being pulled and twisted from the inside. It felt as if it were piled with stones, and I could not even stay in one place for more than a few seconds before I needed to move to try and stop the pain building up too much. I knew full-well that I was going to be sick, and sure enough I was. In fact I was up till after three in the morning throwing up. The next day I was fine, I ate plenty and did not feel ill in the least. At the time I knew, or at least thought, that it must be some kind of physical release of all the stress that had built up before and during the event. As I said in my last blog I was not aware of feeling stressed before events, but I guess it must have been there inside – impacting on me whether I felt it or not.

I did not feel anything of the sort after the first event of last month, or the second, but the morning after the third event there it was again. That feeling of carrying around a pile of bricks in my gut. Pain and discomfort, but more than that. There was a sense of hopelessness. I knew then that the feeling was without any doubt due to the stress of the work I had been doing. It was a direct result of me going out and selling my books and doing talks. It’s hard to explain my feelings, perhaps pain most of all, to people in a way that they can understand, so you might think I am making a big deal out of a bit of stomach ache. But I have been sick and had a bad stomach plenty of times in the past, and I can tell you that this stress induced stomach pain was much, much worse than any I have ever had before.

There was a point, when I was bent over in pain the morning after the third event, where I began to wonder if I would be able to keep on doing that kind of work. Would I be able to commit to planning for an event knowing how I would be left feeling the day after? And more than that, was it worth it? I was in a huge amount of pain and I felt miserable. I should point out that despite what you might think I don’t often complain of pain. For me to react to pain at all it has to get to a point that most others would find hard to cope with. More than once in my life I have gone to see a doctor with an infection in my foot, or ear after weeks of saying only that “It’s a bit sore” to be told that it’s one of the worst they have seen, and they are shocked that I could even stand the pain of putting my shoe on, and walking in to the building. The point being that when pain is bad enough to make me feel miserable you know it must be bad.   So I have to admit I spent that morning feeling sorry for myself. But as time passed the pain began to grow less and less. By that afternoon I was able to relax and watch a film.

I realised after this that I would have to plan events better, and try to do something to stop the onset of pain like this again. I am sure that it is due to a build-up of stress. The stress builds up before the events without me feeling it, and once they are over and done with I feel the full force of the stress in a physical as well as mental form.

I know now that I need to make plans before events to try and stop this from happening, but I don’t know what will work, and the only way to find out will be to test things out. And that means that I might have to try a few things that do not work, and find myself in pain once again.

Because pain, or at least physical discomfort, is nothing new to me – I would say I feel uncomfortable much more often than I feel comfortable, at least when I am outside anyway – If I know I am going out, even if it’s to do something I enjoy, I will have pain in my gut, feel hot and sweaty, and have a tight chest sometimes for hours. And it’s not something that I ever get used to. When I used to go to Judo I would feel like that for an hour or so before going out, then after a few months of going, when most people would be getting used to it, I would start feeling that way in the afternoons, then in the mornings, and in the end I felt that way from the morning of the day before I was due to go out! In my head I wanted to go, I knew I would enjoy it, and as soon as I got there and got going I did enjoy it. But still I could spend up to twenty four hours in physical discomfort just because I was due to go out.  And for this reason I no longer go to judo.

So I don’t know what will work to rid myself of the pain and discomfort that stress, anxiety and sensory overload, can cause, but I want to do all I can to deal with this issue so that I can get out there and do my talks, and sell my book without feeling again like it might not be worth it.

Do any of you suffer from the physical symptoms of stress and anxiety?  Or the physical or emotional impact of sensory overload? If so do you have any tips or hints as to how to deal with them?

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

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?

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

 

Should you grieve for the child you should have had? and what I think about it.

One of the things I have often heard said – that never fails to wind me up – is that when a child with autism is born, professionals will often say `you need to grieve for the child you should have had`.  Ok, there are so many things wrong with that I am not sure where to start.  But first of all let me say – I don’t necessarily blame the parents – I think if you are a professional and you have any kind of understanding of your job, you should know that this not a good thing to say to parents.  Obviously the parents have had an idea of a child in their heads for some time before it was born; what their child will be like, things they will do with the child, and what it will go on to achieve.  And of course it is going to take some time to adjust to the fact that the child isn’t the person they`d imagined in their head. – But here is a little list of why the term `grieving for the child you should have` had is so wrong:

  • The term `grieving` is usually applied to somebody who has died – of course you might say `you need time to adjust to this, read up on it and get yourself used to the idea` but in my mind the idea of grieving for a child is something reserved solely for if it dies.  What this does is put the idea of a diagnosis of autism on a par with the death of a child.
  • Another fact is that grieving for the child you should have had implies that you won’t be able to do any of the things you had hoped to do with thischild.  And that it won’t be able to achieve or fulfil any of the things you had hoped it would.  Basically, the professionals are telling you `your child is autistic.  Abandon any hopes you had for it. `
  • There is no `child you should have had` – you got pregnant, you had a child, that`s it, end of story – it wasn’t like you had a child who died, and then someone snook in and replaced it with a living child who was autistic.  The so-called child that you are grieving for is a collection of thoughts and expectations from your own mind.  You are basically grieving for the idea of the perfect child – a child who never existed.
  • When professionals use the term`grieve for the child you should have had` in my mind they are doing nothing but affirming all of the negative stereo-types and stigmas associated with disabilities.  If the parent doesn’t have any particular knowledge of autism, they are only thinking of the worst- case- scenario, which probably isn’t anything like the reality, and therefore the professionals should be confirming that the child can still lead a happy and normal life.  Whereas when they talk about `grieving`, all they do is increase the negative beliefs that exist around disability.
  • A diagnosis of autism should be turned in to a positive thing as far as I am concerned; now you know what is going on you can make steps to – not curing – but minimizing the negative impact of autism.  It shouldn’t be used as an excuse to make the condition seem worse than it is.  Grieving for the child you should have had basically makes it sound like parents should sit there wishing they`d had a `normal` child.
  • Parents are emotionally vulnerable at this time – they might not be in possession of a lot of facts about autism.  They need to be reassured and have things explained to them.  They probably don’t understand how highly offensive what they are being asked to do is.  In my mind, you are comparing me, and what I have going on, to the death of a child.  You are saying I am not the child my parents should have had, that I cheated them, and that they need time to get their heads around the fact that I`ve been born, rather that the child they were supposed to have.  Apparently my very existence is so offensive that it needs a period of mourning.

 

I can`t speak for everybody with autism when I say this is offensive; I am speaking from my own point of view.  But I can tell you that there are not many things that I find offensive.  Obviously I don’t like things like racism, and I may get upset or angry about it, but that is not the same as being personally offended when somebody insults me – but when people talk about grieving for children they should have had, I do get offended.  But I stress again that I do understand that parents may have no idea how offensive this may be.  Yes it annoys me, but I am not blaming them – they have been given terrible advice and they didn’t know that they shouldn’t take it.  I hope that if you read this blog and you are one of these parents, you won’t be offended, but rather you will take on what I have said, and that you will try to use it to perhaps get a better understanding of why I am so offended by this concept.

 

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