Tag Archives: test

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


Why politics can be life or death for disabled people ….

(Note: I should have written and published this before the election, but I think it`s worth putting out now. One because the result is still not fully confirmed yet, but also because it will still be relevant for other elections, or just to help people get a sense of what is going on in this country.)

Some people are happy to let politics pass them by. They turn off the news and skim past links on Twitter, acting as if it has nothing to do with them. “Its boring” they say, or even worse they make the close to unforgivable statement that “None of it matters anyway”. It should be clear to anyone reading this how silly such a statement is, and I wish that I could just say “On their own heads be it” and leave them to their ignorance, but the truth is the consequences of such ignorance falls on all our heads. Politics underpins everything in life, so by all means if you have no interest in how much tax you pay, the cost of what you buy, the state and price of your healthcare, education, the emergency services, terrorism, poverty, civil and equal rights, crime, homelessness, war or the environment, then feel free to take no interest in politics.

But if you do care about any of those things then you already have a vested interest in politics. This means you can`t just sit back and ignore what’s going on in front of you in the political world. It means that you understand that what you see on the news will have an impact in your real life. There are some groups of people who can see, and feel this more than others.

If like me you are disabled/autistic, and have lived for the past seven years under the Conservative government, you won`t have been able to avoid seeing the devastating real-life impact of their policies. I could sit here and list the atrocities committed by this government, and the coalition before it – and perhaps I will do so in another blog – but for now I want to talk a bit more about what it feels like to watch the fight for number 10 unfold in front of your eyes knowing the very human cost that losing this fight could bring. I will touch on the destructive policies of the Conservative government, but if you want to know more I suggest following these links. ( https://www.theguardian.com/profile/frances-ryan

The Conservatives have launched a two-pronged attack on disabled people, both cutting our benefits, and also cutting the budgets of local services set up to help disabled people. There are people with mobility issues who have to drag themselves around on their own floors because they are no longer able to get carers to come in, and help them to care for themselves. Some people find themselves confined to their homes as they have their mobility benefits taken off them, or find that they are no longer entitled to the modified cars they depended on to get out and about. Disabled people who are unable to work are having their benefits cut to the point where they can no longer feed themselves, let alone pay for care. It`s not going too far to say that disabled people in England in 2017 are treated as less than human by their government.

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The welfare state is being butchered in front of our very eyes, and the cleaver falls first on those least able to defend themselves from its blows. There have been hundreds of suicides linked to cuts in benefits. Think about it; if you need X amount of money to live and you find that money cut, cut and cut again it`s not hard to see what the outcome is. You can`t pay for your care, you have to face the daily struggle of just trying to stay alive, only now you have the Conservative government blocking your attempts. It`s not hard to see how people are driven to, and past the point of giving up all hope. And its not as if disabled people are not speaking out about this. On the BBC`s Victoria Derbyshire show a disabled woman named Fiona confronted Dominic Raab M.P. about these very issues. She told him of people she knew who had been driven to the point of taking their own lives by the harsh cuts to disability benefits. Raab said it was childish. He was recently promoted to the roll of Justice Minister.

Fiona summed it up when she said “This election is life or death for us.” Disabled people don’t get to ignore politics any more, we don’t get the chance to pretend it does not impact on us. We can see the levels of humiliation, degradation and death caused by the Conservatives and their heartless, soulless, brutal brand of politics. We can`t just flick the T.V. off and stop thinking about this. We are watching the election, and its outcome knowing that if the Conservatives remain in power real people will die as a direct result of their actions. Some people will be watching events unfolding, knowing that the chances of them surviving five more years of life under the Conservatives are slim at best.

It must be nice to be able to exist in a state of blissful ignorance; a world where the savage reality of cuts to the most vulnerable, and the levels of suffering that they produce do not exist, or do not matter. But some of us can`t live in that state of ignorance. We know that the fight against the Conservatives goes far beyond a clash over political view points, and for some disabled people it is a fight for dignity, for the right to be treated like a human being, and for life itself.

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


Why are we still hearing that more Males than Females are Autistic?

Women and autism has long been a controversial topic. For years many women were diagnosed as schizophrenic, depressed or just ignored instead of being given a diagnosis of autism. But now a lot of these women are taking matters in to their own hands, and forcing the world to look at autistic women and girls in a new light. You only have to spend five minutes on Twitter looking through their stories to see the common thread. They had a child/friend/husband with autism, or just read up on it, and felt that perhaps they were autistic, and then went to a professional to have that confirmed, and were either flat-out refused, or were told that they could not be autistic because, they had friends, children or could talk to the Dr/psychologist, and sent away again. A few years down the line the strain of living with undiagnosed autism, while trying to act and live like a non-autistic person, becomes too much, and they have an autistic crash. There are a lot of cases of late diagnoses or self-diagnosis, and as I say most of the stories follow a similar path. It should by now be clear to us that women and girls are autistic too, and that we need to take notice of this, and make sure that they can get the acknowledgement they need earlier in life. But there is one statement that is still thrown around far too much in my view, and perhaps it is one of the things holding us back.

`There are far more autistic males than females`.

Think about that for a second. It’s something I can recall hearing years ago, before anyone worked out a female profile for autism, and before the boom in autistic women coming out, and making the professionals sit up and take notice. But why do I still see it so much today? We know now that autism does not just present itself in one way. Now I don’t believe in a female/male profile per-say, as I know some men who would fit the so-called female profile, who therefore went undiagnosed themselves for years. That’s not to say that the female profile has not been a huge help and that a lot of women do not fit in to it, it’s just to say that we want to keep learning more and changing our ideas, instead of getting stuck in a whole new ridged way of thinking about things. There are a lot of autistic women out there now who would never have been diagnosed without the `female profile` though, and what it does show us is how blinkered professionals have been when it comes to giving out diagnoses of autism. When you think that we have known about autism for less than one hundred years, it seems strange that we should set such clear, unmoving statements as `There are far more autistic males than females. `

Let’s look at it this way – we hear some people in the media talk about an `autism epidemic` and about how `there was no such thing as autism in the past. ` We know that this is a silly argument. We found out what autism is, and the more we learn about it the more we can notice it in people. Therefore more people are being diagnosed as autistic. It’s not hard to work out.  And I think the same goes for the statement about more men being autistic than women, or boys than girls. We might have more males on the books diagnosed as autistic than females, but I would be willing to bet that this is only down to the fact that most of the women or girls who are diagnosed have to fight for years to get that diagnoses. It’s as if the system said “Women and girls cannot be autistic.” and then made sure it was so, and that fact would remain true by refusing to diagnose them for years. When we look at the amount of women who have been forced to the point of having an autistic crash, and losing their jobs, as well as suffering from related mental health issues due to this, it is clear that something must change.

Perhaps the first step in this would be to stop saying that more males are autistic than females, and just stop worrying about those numbers. Assess everyone on their own, and not as a male or female, and see if they are autistic.  Don’t let their gender play a part in your thinking.  We know that autism can present in different ways: sometimes in outbursts, sometimes in being quiet, sometimes in being unable to understand emotions, sometimes in being too empathetic to others to the point of neglecting yourself, and these points, along with other things, are what we should think of when we think of autism. Not one set idea that only applies to one small section of society.

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.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

I, Daniel Blake: why this film is so important …

I, Daniel Blake is the new film by acclaimed director, Ken Loach. It stars Dave Johns as the title character, a joiner from the north east of England who is now unable to work following a heart attack on the job.  And Hayley Squires as a young single mother (Katie) who he befriends after he takes her side in an argument at the job centre. The film follows his attempts to help Katie and her children as they adjust to their new life after being forced to move from London, and away from everyone and everything they know, to the only house that is available for them.  At the same time he is trying to navigate his way through a benefits system that seems to be set up to push him back at every turn.

On the surface this is a simple film; an older man who never got the chance to have a family meets up with a young Mum and two kids, and does all the things with and for them that he would have for his own family. But the truth is that the film is about so much more than this.  It is, at its core, a film about people vs. state. About how faceless bureaucracy, and red-tape grind normal men and woman down to the point where they no longer have even a shred of self-respect. A film about how the systems that are meant to help people lack the common sense, or the compassion to even acknowledge when someone is in need.


It is a deeply important film, and that fact in itself speaks volumes. Fifty years ago Ken Loach made Cathy Come Home. A film about a young woman, who along with her two young children, is forced from house to house by a system that is rigged against her.  At times moving far away from any family to the only accommodation they are willing to give her – failed by people who would pass her from one department to the next until she had no clue what was going on. She spent time in a homeless shelter, and found herself brought to her knees by a system that was meant to help, but instead acted against her, and against common sense at every turn.

The fact that fifty years on Ken Loach can make a film about people forced to move from their homes, in fact to different cities, at the whim of the councils, and about people being failed and lied to by a system meant to help them, is shocking. And it should shock you. It might be that you come out of watching this film thinking it is being heavy-handed, that it`s exaggerating.  Well let me tell you that as someone who has years’ worth of experience dealing with the benefits agency, that’s just not true. Everything about this film rang true to me. The hours spent waiting on the phone, medical assessments carried out by people who have no clue what they are talking about, and yes, even people who are being told by their Drs that going back to work would be bad for their health – or perhaps even fatal – being forced to look for a job. I am autistic and can’t speak on the phone myself but I have spent hours watching my Mum deal with the benefits agencies and seen first-hand how much stress and anxiety this causes her. That being said I am lucky, I have someone who will make the phone calls that I myself cannot make.  Lots of autistic people are not this lucky and find themselves alone. Unable to get the help they need they end up on the street, or even starving to death.

I wish that I could say the film does exaggerate, but no.  It is a true and tragic portrait of modern day England for a lot of people.

I won’t go in to the film`s ending, or people’s reaction to it, as I think it’s only fair to let you experience these for yourself.  But what I will say is that as I left the screening people were talking. Not about the normal things people might casually chat about when leaving a cinema. They were talking about their own lives, about memories and feelings the film had dragged up. There were voices raised in anger, and stories being told of past injustices, because that’s the point of this film. Yes we are watching Daniel Blake and the events of his life, but he could be anyone. A man who has worked all his life, and done no harm to anyone can fall prey to the system – so could you, and so could your friends, or neighbours.

As I watched Daniel toil against the system I could recognize all that he went through, and understand how he felt.

This is an important film. Not because it deals with a tragedy from years ago, or atrocities committed in some far off land.  No, it`s important because it deals with what is happening now – in this county, and in the very streets where we live. The sad thing is that a lot of people who might be affected by the issues in this film probably could not afford the transport costs, or admission fees to go and see it.

I would urge anyone and everyone who can to go and see it – not only because it is a very well made and moving film, but because it tells a story that means something. There is no drama for the sake of drama, or forced emotions.  The drama and emotion come from the brutal and unflinching depiction of real life.

Much like Cathy Come Home did for the 1960s I, Daniel Blake shines a light on a corrupt and hopeless system that is failing those most in need of its help. Yes it is an unashamedly political film, but why should it not be? It tells a story that needs to be told, and it does so while still remaining a moving and effective piece of cinema. One of the most important films of recent years, and one everyone should watch if they have the chance – especially politicians and those working within the benefits system.

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 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

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