Warning: Declaration of googlechrome_walker::start_el(&$output, $item, $depth, $args) should be compatible with Walker_Nav_Menu::start_el(&$output, $item, $depth = 0, $args = Array, $id = 0) in /homepages/26/d132669229/htdocs/blog-it/aspie/wp-content/themes/gchrome/functions.php on line 12
books » Blogging AS an Aspie
msgbartop
Matt has Asperger’s Syndrome (AS), an Autism Spectrum Disorder (ASD) and is writing this blog so that people can gain more of an insight into how people with the condition process thoughts, feel emotions, react to situations and generally handle life.
msgbarbottom

17 Aug 08 a friend like henry

I’ve just finished reading a friend like henry by Nuala Gardner, which is about Dale, her son, who has been diagnosed with classical (Kanner) autism. It’s about her fight to achieve the correct diagnosis, to get the support he is entitled to, and about his remarkable journey to a full integration into society. A TV drama, After Thomas, is also based on her story, but that’s a separate post due to my differing views on the film.

I almost cried at a few points in the book, particularly when the dog dies in the final chapter. But it was the afterword that actually had me with tears coming out of my eyes. Two quotes from the penultimate part of the book strike a lot of meaning with respect to my knowledge and experience of autism/Aspergers:

If I had to say just one thing about autism as a disability, it is this: we must never underestimate how hard a person affected has to work every day, all day, to live by our society’s rules and to fit in. The anxiety and effort this takes is always immense, and, like their autism, it is for the rest of their life.

It sounds very similar to the words of my Step-Dad a few years ago, and it truly sums up how I live my life. Each day you may see me as a ‘normal’ student at college, chatting, flirting, swearing, getting on with the work, and having a laugh. To do everything except the work itself, it requires a massive effort, whereas by comparison the academic work is as easy as you’re finding the small talk.

You worry about passing the exams, doing well in the subject, and coming home with your anticipated grade – be that an A or a U. I worry about whether I will mess up and be labelled as a freak, whether I will appear ‘normal’, whether I will end up a total loner with no friends. Yes, you may worry about whether you will ‘fit in’, but to do this may require an hour or so in the morning sorting out your hair and make-up. I have to worry all day every day about how I am seen, what I am saying, how people are reacting, and most importantly, whether I am interpreting any of that correctly!

Through the drama After Thomas and this book, Dale and I hope that at long last some lessons will be learned.

That one simple sentence made me reflect on everything I have been through recently, particularly since starting at this current service provider. My Mum’s fight for my diagnosis and the subsequent fights for adequate provision were all too similar by my recall. I was diagnosed about 7 or 8 years after Dale was, and I can’t say that much has changed. Departments within services are still trying to pass files and the accompanying responsibility around, with nobody quite certain where Aspergers ‘fits’. Multi-Agency teams cannot agree on who should be doing what, and none of them are keeping the important people in the loop.

With my forthcoming transition to the ‘real world’ as it were, I have been thinking on what is out there, how good it is, and is it really worth it? Currently, I describe myself as being “in this cotton-wool padded world, with far too many walls layering me from the real world, it’s going to come all to soon when those walls crumble and I’m the only thing left standing.” My point behind this is that with the current culture in healthcare provision, all too often the actual purpose for providing me with these services gets lost, “in less than a year’s time, it’s likely that I will have to do this anyway.”

To prove that I can cope independently requires being given limited amounts of responsibility, but in this day and age, somebody always has to be responsible for my care, and most of those somebodies are governed by ‘risk management…