Monday, July 12, 2010

Reflections on Mature Autism

Rory Patton

I love it when someone asks me to write a guest piece about my experience of autism because it compels me to think about it in a way I don't in my blog. On this occasion the invitation has been more or less coincidental with a recent blackout and even more recent meltdown. I don't pretend to be an expert on autism; sometimes I am not certain I am even an expert on me!

There has been some debate over whether Asperger's Syndrome should disappear as a discrete diagnostic category and instead be subsumed into the more general description of Autism Spectrum Disorder. I personally prefer the label Asperger's -- much more socially acceptable than "Autism" -- but recent events have reminded me of just how firmly we are part of the Autism Spectrum. I am very much inclined to believe that the key difference between Asperger's and High Functioning Autism is only the early acquisition of speech. I am also not entirely sure how we measure the level of function. I am high functioning Aspergers but give me the right level of sensory overload and you might be hard put to distinguish me from someone with low functioning autism. My recent meltdown reminded me very forcibly of just how autistic I am.

As someone with high functioning Asperger's I have found myself -- like others of my kind -- on the receiving end of hatred from some parents of more severely affected autistic children. I find this upsetting largely because it seems so unjust. I accept that on occasion I may express opinions  too forthrightly and I don't realise how other people will react but I do actually try to understand them. I have just bought a book called Mindreading by Sanjida O'Connell that explains Theory of Mind so I may soon understand why some people hold the ridiculous belief that they can know how someone else thinks and feels. I do not like that they discount my experience and opinions, I am as entitled to express an opinion as they are. It is funny how many neurotypical people around the autism field get fixated on one point of view. This piece will probably upset people if so I apologise in advance as it is not my intention. If you do get offended please don't just have a go at me, explain what I have done to upset you.

One of the areas in which I have been abused is my support for vaccination. I accept that some children's onset of autism symptoms is coincidental with vaccination, whether the vaccine is the cause is unproven, personally I am certain they are not the primary cause I incline rather to believe that autism is part of the process of evolution. I do not believe that we should not vaccinate but I totally support those calling for more independent research into the triggers that precipitate the onset of autism symptoms. I have a theory -- based on nothing but vegetarian prejudice -- that the trigger is chemicals used in meat products but until the research is done who knows? Perhaps it's pesticides and exhaust fumes probably don't help either. All that having been said I sincerely believe that vaccination in the majority of cases provides protection from disease for both the individual and society. I do believe that the Autism community should work together to seek the causes rather than fight for one exclusive point of view -- at the end of the day it won't matter whose position is right as long as we find the truth. Perhaps instead of starting with a theory and looking for evidence to support it we should start with autism and try to understand it.

Many parents hope for a cure for their children, I suppose that's understandable. I don't want a cure and I certainly don't want antenatal screening and this causes a degree of argument. I believe what we can agree on is that we all want the best for people with autism. I think we should be designing a world that is a good place for people with autism to live in. We should be finding the best ways to lessen the undesirable symptoms and we should not allow orthodox science and logic to close our minds to the possibility that alternative therapies may help some people. There is a tendency by some scientists to discount the experience of parents – anecdotal evidence is still evidence and should be taken into account but not to the exclusion of experimental data. I personally am sceptical of homoeopathy and consider it illogical but illogically my chronic heartburn has responded so well to Bio-chemic Tissue Salts that I am off my four to eight a day Gaviscon habit. We would be rash to discount anything out of hand.

If -- as I believe -- autism is an integral part of humanity's evolutionary process then we cannot comprehend it with our old beliefs but need to develop new ways of thinking. We are moving into a new technological era where a level of autism may well be a positive advantage, certainly an age where traditional social skills are becoming less relevant and the ability to be on one's own is an asset. There is a blogsite with the wonderful name Adventures in Autism -- the name is inspiring, the content you must evaluate for yourself as I am not prepared to comment on it. As someone with high function my autism is an adventure and a journey of discovery, every day is a challenge and I am -- to some extent -- glad of that. Is autism an adventure for those less able? I don't know but neither does anybody else except themselves.

Before anyone decides how life occurs to someone with autism may I make a personal point? I love my spinning tops and yoyos and my cameras, my routines and repetitive behaviours give me a lot of comfort, my collection of cables is reassuring, I enjoy touching things -- if I choose not to display emotions or indulge in pointless chit-chat it does not occur for me as a problem just as I am perfectly happy not to have to suffer other people's displays of emotion. Being on the Spectrum does present difficulties but it is by no means all bad, the people about whom you worry may not be as unhappy as you suppose -- obviously they could be but in many cases they probably aren't.