World Autism Awareness Day

The 2nd of April was World Autism Awareness Day. Just search Twitter, Google, Facebook, or Instagram for #lightitupblue or #LIUB and you will find pictures of buildings, monuments, and the Wonders of the World all lit up blue for autism awareness. The Sydney Opera House, the Pyramids of Giza, Christ the Redeemer, and the Niagara Falls all lit up blue.

This day came to my attention about three and a half years ago. At the age of three, our son Wiremu was flagged at preschool for having very little verbal communication, and limited social interaction with other children. As our firstborn, we had dreams of raising a trilingual super-child (Samoan, Māori and English) and we assumed that because Wiremu was learning three languages, he didn’t speak as quickly. We also thought that Wiremu didn’t go out of his way to interact with other children because there simply weren’t that many children around. He loved the many adults in his life and was very close with his grandparents, aunties, uncles and cousins.

Wiremu

When the Ministry of Education and all their specialists became involved at the beginning of what was to be more than a year long series of diagnoses, we really believed that they would find that there was nothing really different about our son. The truth is, autism is estimated to affect up to 40,000 individuals and their families just within New Zealand. It has a higher prevalence than Down’s Syndrome and cerebral palsy. Chances are, you know someone that is autistic or has a family member that is on the autistic spectrum.

Being the good librarian that I am, as soon as it became clear that Autism Spectrum disorder was a likely diagnosis for Wiremu, I went straight to the library catalogue and searched for resources on autism. My readings informed me that ASD is a complex developmental disorder involving delays in problems with social interaction, language, and a range of emotional, cognitive, motor and sensory abilities. Since then I have easily read, watched, and at least reserved (took one look and instantly returned) most things autism related within Christchurch City Libraries. At one stage, there was almost a whole shelf of books on autism in the relatively small community library that I was working in.

Autism

There was also lots of very informative websites like Autism NZ, and Facebook groups for parents with autistic children that were awesome e-support networks, online forums, and videos. I think as a parent or carer of a child with autism, it is firstly important to get your head around what autism is. I read book after book about these families of autists, but I found it so hard to fit what I was seeing at home into this stereotypical definition of autism. Wiremu is so loving, he is a wonderful judge of character, his smile lights up a room, and his giggles are infectious. He adores swimming, sausages, Michael Jackson, rainbows, his little brother Che and Mickey Mouse. He doesn’t know many personal boundaries, so if he likes you he will sit on your lap and give you a full kiss on the mouth.

Once you realise that autism presents itself so differently in every individual, and that there is no cure for autism it makes things easier. With the support of loving family, friends, a team of awesome specialists and some amazing teachers and teacher aides – and some good quality information – all things are possible. Wiremu is currently attending school, and is fully integrated into a Year 2 mainstream class with the help of his teacher and wonderful teacher aides. Just last month, he started writing letters without prompting and matching the letters of his name. As a family, Wiremu has taught us to slow our fast-paced lifestyle, to appreciate and celebrate the tiny but monumental achievements we make together everyday.

I have made up a reading list of some helpful autism resources for parents and families. Don’t be afraid to seek help, there are some wonderful people out there that are always willing to do what they can. And don’t always take no for an answer. #LIGHTITUPBLUE

Autism resources

A Brain of a different hue

Search catalogue for The Rosie ProjectMy last blog lamented a book drought…it has ended with a small joy of a book. In The Rosie Project by Graeme Simsion, we meet Don Tillman. a geneticist living in Melbourne. Don tells us of his life, which is navigated using very strict, logical rules and boundaries which are obvious to all around him and the gentle reader, but strangely not by Don himself, as classic Autistic traits.

Schedules and routine make up his life, but he increasingly becomes aware that he should have a life partner, to enable him to fit in. He devises a 16 page questionnaire that he plans to use to narrow down his search and to enable him to find the perfect match.

Of course, as with life itself and all good romances, his course will not run smooth, and perhaps he will find his match where he least expects to.

Full of quirkiness and gentle humour, I found I really warmed to Don, and was hoping he’d find someone who ‘got him’ as he was, without him having to compromise too much of what made him interesting.

At a speed dating event, Don tries to apply his criteria to the women he meets:

Rather than ask about IQ, I decided to make an estimate based on Olivia’s responses to questions about historical impact of variations of susceptebility to syphilis across South American populations. We had a fascinating conversation, and I felt that the topic might even allow me to slip in the sexually transmitted diseases question.

I often sense the square pegs in our community feel pressured to fit in, when their unique take on life and their way of view of the world adds to society as a whole and to the lives of those around them.Search catalogue for The Curious incident

If you are a fan of The Big Bang Theory, as I am, you’ll see a little of Sheldon in Don. It seems I’ve come across a few autistic spectrum heroes in my reading and viewing lately. The Bridge, a Scandinavian television crime drama, has a wonderful female lead, Saga Noren, whose detective brilliance is not bound by emotion or ties to others.

Of course there is The Curious Incident of the Dog in the Night-time by Mark Haddon. A wonderful murder mystery, narrated by Christopher Boone who has Aspergers.

The Rosie Project was a fun read, it had a light touch, driven by a search for love and acceptance and with an ending that made me go awww.

Have you read great books or watched movies about people who think outside the square, or refuse to fit the dreaded square hole? Do share!

Autism and Asperger Syndrome

CoverIn my last post I talked about movies with fictional characters with autism. There’s been a lot of news coverage lately of how people with autism and Aspergers get on in the real world.

There are many sides to the argument – so we turned to the Source to explore the issue.

In real life as in film, we continue to struggle with our understanding of autism. Is it caused by vaccinations? Are people with Asperger Syndrome criminally responsible if they hack into computer systems, or steal light fittings in the Red Zone?

Does Asperger Syndrome even exist? The creators of the DSM (the diagnostic manual used by psychiatrists)  suggested quite recently that definitions of Asperger Syndrome were too varied to codify and therefore might be left out of the next one altogether –  which would have meant it officially ceasing to exist. Not a move likely to be welcomed by those who now define themselves as ‘aspies’.

Then there are the young men caught in the criminal system who argue that obsessions are, by definition, part of the syndrome and that therefore they cannot be held entirely responsible for their behaviour. I have some sympathy for this view. I once worked in an institution where an autistic man had developed an obsession with socks. He collected them from all the bedrooms. The manager finally had padlocks installed to stop him, but someone else with an obsession for collecting metal filed them off again. Neither of them had any hope of understanding the effect they had on others, which was fortunately negligible.

The whole vaccination issue is even more difficult. Is fear of vaccinations causing outbreaks of diseases like measles? Or are the vaccinations causing an epidemic of autism?

Whichever side of the argument you are on, its always interesting to find out more, either by delving into The Source, reading a book, or just sitting down and watching a good film.

The autistic personality

CoverAutism has been flavour of the month in the film world for a few years. Movies like Rain Man and Snow Cake portrayed people with autism as holy innocents and savants. More recent movies have characters with more depth, and defining characteristics other than autism.

In My Name is Kahn for example, the lead character is just as important for his Muslim faith as for his autism. Adam is primarily about a romantic relationship. Movies  like The Horse Boy focus on families looking for ways to help their autistic children. As our viewing matures, so hopefully does our view of what it is like to be autistic.

Mercury Rising, I am Sam, and The Other Sister are some more recent film featuring autistic characters. There is also a movie based on the book Mozart and the Whale.

You can find out more about autism and Asperger Syndrome in the Source: