I am honoured to be asked to come and speak with you today as we launch the National Autistic Societyís 'Think Differently about Autism' campaign. I have only just turned 18, so I am right at the start of my adult life and still have a lot to learn. I donít know if you will agree with what I am about to say, however, I think we can all agree that this campaign is vital for the adult autistic community, and I for one, cannot wait to be involved with it.
As you will have seen from the film clip, I make the point that, there is a need for society to accept those with autism and to see us as being different rather than being disabled. However what the film didn't show was that I also said that there is a need, for society to provide the support that people like us need. Certainly, if I had had the support I needed during my childhood then perhaps I would have achieved more at school than I have. Perhaps it wouldn't have resulted in me attempted suicide and being prescribed antidepressants since the age of 12.
So I want to make it absolutely clear that I am not saying that all society needs to do is simply see us as being different and then everything will fine. That's just daft. What I am saying is that I don't see myself as having a disability. And I don't want to be cured. If anyone needs a cure, its you lot with your endless need for socialisation and gossip. We need less talk, And more action
I do see myself as being different from you so called normal people. And there is a need for society to see us as individuals needing your help to adapt to living in a world that often seems alien to us. Let me say again, I don't want to be cured of my autism. I wouldn't be me without my autism. Autism is a part of my personality. It entwines every part of me. It made me who I am. Take it away, and I am no longer Joshua Muggleton.
Some of you may be aware of the Autism Bill passed in the U.S. earlier this year. America is pumping almost a billion dollars into autism. Sounds good right? However, if you read further on, it says this money is for what appears to be primarily autism screening. People are saying that in another eight years, foetuses will be routinely screened for "autistic genes" Ė genes that supposedly increase the chances of autism. And then those foetuses can be aborted. They are predicting that in just eight years there will be no more babies born with autistic spectrum disorders in the US. Zilch, nil, nada.
Now don't get me wrong. I have seen VERY low functioning autism. I know a young girl of 15 who isnít verbal, who has no understanding of the surrounding world. Believe me, I can imagine what it is like for that family, we are friends with them. But she is happy, and is now living in specialist facility for people with very low functioning autism. Although her parents miss her terribly, her they are happy because she is happy.
So why do people like her need to die as foetuses? She is happy, she enjoys life, she may not have the awareness that we do, but she still has the opportunity to learn, to develop. If she was going to live out her life in pain, I could sympathise with this. But most people with autism and Aspergers do not live in pain.
Well, thinking about it, thatís a lie. Sometimes we do live in pain. But that is the pain caused by a society of people that will not adapt and make little changes, to help people who have the ability to flourish. Einstein, Newton, Curie, Beethoven, are just four geniuses that may nowadays have been diagnosed as having an Autistic Spectrum Disorder. Correct me if I am wrong, but these people revolutionised the way we understand the world, they allowed us to make so many technological advancements.
Is society now saying that it doesnít need us? Thatís a bit arrogant donít you think? I quote Temple Grandin " If the autistic gene was eliminated at the dawn of time we would all be sitting in caves socialising", And correct me if I am wrong but that is what we are talking about Ė removing the autistic gene?
Now I wonít deny, many families find it hard to cope with children on the autistic spectrum. But that could be stopped if, instead of doing it the "American way" i.e. getting rid of the problem, or drugging us up so we barely know who we are. If they put the money into education, training, funding the things that allow people with Aspergers and autism to positively contribute to society, and the less able people with autism to enjoy their right to life wouldnít everyone be happier?
I want to be accepted as a fully paid up member of society and be able to make a full contribution. But I can only do that if society learns to adapt to the way I think and operate. If it cannot adapt then it needs to give me the support I need in order for me to be able to cope.
I know that am fortunate to be a person with autism who is able to speak up for himself, and I fully support those who believe that people with autism should play a greater role in defining the policy and direction of the NAS. Organizations such as the Autistic Liberation Front and Aspies For Freedom have sprung up because they have been disillusioned by mainstream parent-run organisations such as the NAS. This is regretable, and there is obviously a need for the NAS to build bridges to these organisations. I realise that this can be difficult sometimes, as the nature of our difficulties means that we can sometimes be awkward people to deal with. But equally, you so called normal people have your fair share of difficult people too! I think that it's absolutely vital in this campaign that we highlight the issues faced by individuals right across the spectrum from the very able individuals living independently and holding down a job - to those needing round the clock 24 hour care.
So how can the NAS ensure that in this campaign we highlight the needs of all those on the spectrum? Well first of all we need to understand the issues. I'm a great believer in the NAS Senior Management Team and our policy team gaining some hands on experience in finding out what life is like for people with autism and those that care for them. Hearing about the issues we face is not the same as understanding how we live them. I am aware of course that the NAS has it's own adult services which support people with autism. But how are our policymakers and management team going to understand the needs of those of us who struggle on a daily basis to live without the support of parents or carers? I think that for some of us, it may be a real eye-opener.
Secondly, I think we need to concentrate on the possibilities rather than solely on the difficulties. I realize that there may be great temptation within the campaign to highlight the difficulties - it undoubtedly has the biggest impact with the public. But what about a few 'what if' stories, or some positive success stories. Thinking differently about autism must have a positive message.
Thirdly, I think that there is a danger of overlooking the needs of the very able people like myself. Now, I know what you're thinking - 'he would say that wouldn't he'! But the NAS has always been a parent led organisation, pioneering services to those people with autism who need residential care. I think of my two younger brothers who are more severely affected by autism and who are unlikely to be able to live independently like me. Their needs may be more obvious perhaps in terms of the support they will need in daily living. However the danger is that the needs of people like me are not seen. After all, I may look pretty normal, and I can act pretty normal too. However it is all a mask, and part of my coping strategy. When I was young, I spent hours watching you Neurotypicals interact, trying to figure out what on earth makes you tick. To this day I am still trying to work it out. But I had to try and work this out, because without doing it, I would not be able to interact with you at all. I learned to act like a neurotypical.
The point is that with just a little support and understanding very able people with autism can play a full part in society, holding down a job, even marriage or a relationship.
But our needs are often missed because we are often considered too able to qualify for services - until of course our coping strategies fail and that results in us losing our job or doing something stupid and get taken off by the police or paramedics.
Thinking differently about autism involves understanding how different we all are. The lady you saw in the video, Amanda Baggs is very different to me. I have never hand-flapped and, I have always been very verbal. Yet even there, there are similarities. I too prefer using a computer for communication than face to face contact.
At this point, I would like to quote from "Don't mourn for us" by american aspie Jim Sinclair. He says thisÖ
"We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us . We are alive. We are real. And we're here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but an exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be"
Ladies and gentlemen, lets get rid of the stereotypes, lets get rid of the "Rainman" image or the "living in a world of their own" type of thinking. Lets do something truly amazing. Letís show the daily reality of living with autism right across the spectrum.
Then, and only then will people begin to think differently about autism.
Jim sinclair's "Dont Mourn For Us" is at http://ani.autistics.org/dont_mourn.html