Where Are All The Good News Stories?

(© Cute Colors)

(This is one of those rare posts where I'm going to drop all the usual Bloggityville 'shinyness' and just speak directly from my heart. There may be readers who are offended by what I'll have to say on this subject but please understand that I'm not being critical of anyone in particular - just The System in general. I hope you will understand that I'm offloading here and I don't intend to offend. This is just my experience and my opinion :) Also, this post is very long. You've been warned!)

My husband likes to visit 'clip and link' sites on the net when he winds down after work. This evening he was doing just that and called me over to watch a video of a disabled man singing The Star Spangled Banner at Fenway Park. Quite possibly this might be more of a well-known story in the States than down here, but the basic gist of it was, this lovely lad was singing the national anthem in a very off key voice until the whole crowd kind of got behind him and continued to sing along with him - thousands and thousands of voices helping this guy out. It was great.

This reminded me of the Jason McElwain story, a video I've watched dozens of times since the story broke, and led me on a bit of a YouTube Tour of Autism.

To be frank, I'm disturbed by what I saw. Autism-related videos on YouTube (and autism stories in the media in general) seem to fall into three basic categories:

* Autistic savantism (ie, Rainman)
* 'Shock & Awe' stories about how Little Johnny is so severely affected by autism Mum and Dad just can't possibly cope any longer (and most heartbreaking of all, the stories of parents who have injured - sometimes fatally - their autistic children)
* 'Cure & Blame' stories - the MMR debate, chelation, Applied Behaviour Analysis therapy (ABA), the autism 'epidemic', how my son's autism was 'cured' and similar stories.

I've always had a problem with the way mainstream media depicts autism. It's either tick box A, B or C above, nothing else. What bothers me most is that for those who haven't had autism touch their lives, or don't associate with disabled people generally, these three categories are all they ever hear about autism. Insensitive people, on hearing that your child is autistic, will either launch into a story about how their neighbour's niece's son plays the cello like a pro at age three, or recount a newspaper story where some poor folks down there in Boondockville tied their autistic child to the bed, or spew forth some diatribe on how they don't immunise their kids because they're afraid the vaccine will 'give' their kids autism.

Can I just pause for a second and say, this hurts the autism community far more than you know.

Let's start with savantism. The occurrence of autism currently stands at about 1-2 per 1000 people (as distinct from Autism Spectrum Disorders, or ASDs in general (of which autism is one condition), which is 6 per 1000 - I'll be focusing mainly on autism as a separate condition distinct from the more general term 'ASD'). Of that number, only five, possibly ten percent of autistics show savant qualities. And yet what's the first thought you have when you hear the word 'autism'? Rainman. A seriously large chunk of 'autism airplay' in the general media goes toward perpetuating the myth that if not all, then at least the majority of autistics are savants. Not all savants are autistic (though roughly half are), but the percentage of autistics who are also savants is very, very small.

Secondly, stories of infanticide and horrible, horrible abuse stories of non-coping parents burden my heart greatly, but there's also a small part of me who hates the media for portraying it at all. The general public already has cause to think of autism in a negative light, but these stories only serve one of two purposes. You either sympathise with the parents involved, or you don't. Speaking from the middle of the ring here, there's no excuse, not a single one, not autism, or ADHD, or intellectual disability - nothing whatsoever will induce me to sympathise with the parents involved in these stories. In 2003 in Australia, a mother smothered her 10 year old autistic son and she only received a five year good behaviour bond. This particular link disturbs me even further because it is literally filled with excuses. I'm not saying the circumstances surrounding this poor family weren't harsh - they were, and if anyone should understand that, it would be me - I, like many, many thousands of other 'autism parents' battle frustration, confusion, advocacy issues, bureaucracy, funding bodies, early intervention services, stress, exhaustion and yes, even depression on a frequent basis. But other parents don't crack like this woman. We might scream and cry and throw a (well-deserved!) hissy-fit when our funding is cut, or we have to literally force the school system to provide the necessary services for our kids, or (as one dear internet friend and fellow 'Aussie autism mum' puts it) 'wipe poo and toothpaste from the walls', but we don't take it out on our children. Get angry at the system, not the child. I will back you a thousand percent, I will sign any number of petitions lobbying the government for more funding, heck - I'll even march in a picket line if you need me too. But don't expect me to feel sorry for this woman.

'Cure & Blame' stories are almost the worst of the lot. For the record, here's what I believe about autism: Autism is a brain development disorder characterised by impaired social function and communication. Note I said 'impaired' and not 'absent'. Another common misconception about autistic children are that they're all slowly rocking in a corner, unable to form meaningful relationships with people. This is just plain ignorant. The single most important thing I long to tell each and every misguided, ignorant and scare-mongery individual out there is that autism is a spectrum disorder. There's a whole arc of symptoms and two people, both with an autism diagnosis, will never be exactly alike in symptoms or behaviours. Autism just doesn't work like that. Pigeon-holing autistic children is one of my pet peeves, and right about now is where my Advocacy Mama hat comes out of the closet, because whenever I describe autism to anyone not familiar with the details of it - and, by the way, I'm always, always happy to answer questions, as are most 'autism parents', so please ask us and stop staring at our children! - I always slot in something about it being a spectrum disorder.

Take Master J for example. His diagnosis was 'autism' - not Asperger's, not PDD-NOS (where an individual might fit some of the symptoms on the autism checklists but not 'enough' for an confirmed diagnosis). Over the years, we've been blessed to discover that he is high-functioning and in the 25% or so of individuals with autism who do not have an intellectual disability. Think about that for a moment. If you had 100 autistic individuals in a group, three-quarters of them would have some form of mental impairment, from slight to severe, as if the decreased ability to socialise and communicate wasn't enough! J meets our eyes, speaks wonderfully (with maybe a slight rearrangement of words sometimes, Yoda-style, LOL) and has friends. He'll always be different, he'll almost certainly be special-educated for the remainder of his time in school (though his special ed class is within a mainstream school), and it is highly likely he will either remain living at home indefinitely or at best, in a small-group living arrangement (like a retirement village of sorts, but for disabled folk) But God, we're grateful for him.

I don't pay any attention to the MMR debate. I don't believe in chelation (heavy metals? auugh). I don't believe there was anything I could have done to prevent it. I believe there's a genetic component. I believe in my son, and I believe that the 'cure' stories can often do more harm than good. Autism cannot be cured - it can only be researched, managed, lived-with and enjoyed - I know! Enjoyed! It's possible, LOL. When I hear of people 'curing' their child's autism with dietary intervention, I want to scream. You can manage the symptoms of autism with dietary intervention (usually a gluten and casein (dairy) free diet) and it can have a remarkable difference on behaviour and communication, but because I believe that the cause of autism lies in the DNA, I find it almost offensive to hear the word 'cure' and 'autism' in the same sentence. For the record, we have tried the dietary route in the past with J and yes, there was improvement - but how much of that is autism-specific and how much of the 'no additives, colours and preservatives' approach is just plain good parenting sense? If we restrict chemical-laden foods for J, then we do it for Boofah and Miss Moo as well, and it has nothing to do with the autism. I should pause to point out that the GFCF diet is much, much more complex than simply 'no additives'. The theory follows along with the idea that gluten and casein-containing foods affect the body of an autistic much the same way as heroin affects an addict. You'll often hear stories of autistic kids who crave bread, pasta, yoghurt, milk and cheese (we called them The Magic Five in our house). Once they've had their 'hit' of gluten, their behaviour settles until the feeling wears off and the merry-go-round begins again. So in this circumstance I absolutely support dietary intervention - if that is what you've determined works for your child. But I don't think it can cure him or her - just make the condition a whole lot easier to deal with.

When we were newly-diagnosed, the one thing I couldn't find in any of the (many) books on autism on the shelf, or in newspapers or on TV, were positive, normal, average, everyday stories about kids on the spectrum. They seemed to only ever fit into the three categories described above, and that was more than a little depressing. If you're not a 'cure' advocate, and your child isn't a savant, and if you just plain don't want to hear stories of woe and sorrow, you're not really left with much. Which is why stories like that of Jason McElwain have always touched my heart. A good news story that was focused on the individual, and not the autism. It wasn't a 'cure story' and there were no debates on causes. We need more stories like those.

And thus ends my soapbox session for November. Back to posts on menu planning and housekeeping and - oh, I don't know - cupcakes tomorrow, I promise, LOL.

P.S. I highly recommend the essay "Don't Mourn For Us" by Jim Sinclair, an autistic adult. The link is in my left sidebar. This essay, read first when we were newly-diagnosed, changed how I viewed autism.

Cheers,
Lizzie