I was once challenged by a mother over my use of the word 'autistic'. This mother, who had a child with Autism, questioned me over the appropriateness of calling a child autistic. Her enquiry was barbed enough to let me know that she was not actually asking me my opinion, but in fact letting me know hers. Which was just as well because I was so stunned by the confrontation, I couldn't reply. I was informed that to call a child autistic is to define them as autistic first, child second. Whereas she would prefer it if they were referred to as children who have autism. I took her point, it was valid enough and I very rarely, if ever, use the word 'autistic' these days. And I certainly didn't dare utter the word in front of her again!
Having a child on the Autism Spectrum is all-consuming and every one of us in this position understands the gambit of daily battles we all endure. Amongst which is the abuse we receive from unwitting members of the public who feel they are doing a public duty to inform us our child clearly needs some discipline because of their behaviour out in public. So the onslaught from a Mum who knew I had a child who had literally just been diagnosed with Aspergers and who should have known I was still finding my feet in this new World I was entering, was confidence shattering. Whilst I don't expect to get on with a person just because we both have children on the Autism Spectrum, I did expect, as naive as it may sound now, we would all have empathy for one another. I certainly did not expect us to attack one another over the words we use to describe our children, especially when we face regular unkindness from others. How wrong I was.
Recently, I have seen a lot of discussions on Asperger websites over the word 'Aspie' and whether or not it is an offensive term. Presumably, some take exception to the word 'Aspie' for the same reasons as they would to the word 'autistic'. The unleashing of vitriolic comments on others who use the word 'Aspie' leaves me bewildered. Others, find the word less medical sounding and use it in an affectionate way to describe their child's condition. I can see older children using the word 'Aspie' to describe themselves, helping them relate and connect with others, without being ashamed of it. Teenage children who are capable of making the word 'sick' not refer to vomit but something that is cool, I'm quite sure can change the interpretation of the term 'Aspie' into something they consider awesome! 'S'up man, heard you're an Aspie' - 'Yeah, what ofs Dude?' - 'That's totally sick bro'! And no, I have absolutely no idea what the youth of today are talking about half the time either.
Using the above as an example, it seems to me the problem with certain words is not the words themselves, but the fact that they refer to our children having Autism or Aspergers. Whilst we, as parents, want others to realise being on the Autism Spectrum is a very real condition with very real symptoms, we worry, quite rightly most of the time, that people will view this condition wholly negatively. We try to push the existence of their condition into the background, so that others don't see them as less able. Tony Attwood refers to the 'disabilities' of our children as 'differabilities' which is totally accurate. For every typically developing trait they don't display, they have the ability to do something their typically developing peers don't. How many four year olds do you know who can read and spell despite still developing language skills? How many five year olds do you know who copy a painting so precisely you'd think it was an original but who have the inability to write? Harry has such an eye for attention to detail that since the age of four he has been making model planes with little more than a few lollipop sticks, cut out pieces of paper and sticky tape (and then, of course, has had to make them for the rest of his class). But his ability to walk away from me into the class is still something, at the age of eight, he severly struggles with.
Having a passionate belief about something is not to be knocked, apathy is a total waste of a life, but if that passion is over the dislike of the use of the word 'autistic' or 'Aspie' consider this; as opposed to pistols at dawn every time someone says one of these words, could our energies be better spent raising awareness of the Autism Spectrum itself? More specifically, instead of denying our child's condition, could we use our time better reinforcing the positive attributes of having a child on the spectrum? We need to tell our children every day 'you can do this because you have Aspergers or Autism'. If we teach our children their condition is not a weakness but something to be proud of, then the scenario of it being considered 'sick' to be an Aspie may not be as far-fetched as you may think If we empower them, they will be the ones to create this shift in attitude we all seek.
Of course, a little star power will do wonders too which brings me onto this past weekend's article in U On Sunday magazine featuring Kate Winslet. Suzanne Wagmann, herself a mother of a son with Autism, (who uses the word 'autistic' at least four times), interviews Kate who has recently set up a foundation for raising awareness of Autism, called the Golden Hat Foundation. In 2009, Kate was asked by Cherie Blair (wife of former British Prime Minister, Tony Blair) to do the voice-over for an Icelandic documentary called A Mother's Courage: Talking Back To Autism. I have long been an admirer of Kate's acting abilities and her refusal to conform to the size zero club of LA, whilst actually being the epitome of Hollywood glamour, so am delighted with her involvement.
I do, however, have one gripe against Ms Winslet. You may remember a little film she did back towards the beginning of her career called Titanic in which, coincidentally, my cousin was also cast opposite Kate in the sinking scenes (sorry to ruin the ending of the film for you if you haven't seen it)! Due to Kate presumably fluffing her lines or what-have-you, the film ran behind schedule and over budget and something had to give. That 'something' was my cousin's part which ended up being scrapped. Why would I be upset about this you ask? Well you see my cousin at this point was unmarried and upon hearing about his role in Titanic I had already chosen my Oscar's frock to accompany him as his date! As you can imagine, I was gutted. I'm sure my cousin was a little disappointed too but I'm sure he is now grateful not to be a big Hollywood star given that he is now happily married and we all know how Hollywood marriages end up!
However, Kate does redeem herself in my eyes a little as I love the fact that she has become involved with raising awareness of Autism, not because she has found herself as the mother of a child on the Autism Spectrum, but simply because she can and wants to. In addition to setting up her foundation, she has helped produce a book called The Golden Hat: Talking Back To Autism which features the likes of George Clooney and Justin Timberlake and will be released in April 2012 with all proceeds going to the Golden Hat Foundation.
But Ms Winslet if you are reading this, to fully restore my admiration for you, I expect a phone call from George Clooney inviting me to be his date at next year's Oscars! In the meantime, please let's all be kinder and don't attack each other for using the term 'Aspie' or 'Autistic'. There's enough negativity in this World and I, for one, do not have room for any more. There is only room in my life for tolerance, love and gin! (And I will of course find the room in my schedule for my date with George next year...)!
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