02 April 2011

Autism Awareness Day

April 2 is World Autism Awareness Day. Senator Jim Munson wrote a fantastic article for the Ottawa Citizen. Go read. Then come back. I'll wait.

Several things struck a chord with me in his letter so I'm going to go through it:
We have all witnessed the scene. The shrill cries of a young child at the mall. Arms and legs flailing. The mother, powerless against her child's fervour.
An intense scene like this triggers all sorts of responses in onlookers -from amusement to sharp judgment: "That woman can't control her own child!"
I wonder how many of us might wonder: "Could that child be autistic?" A temper tantrum is only one of a collection of symptoms of autism.
Oh hell yeah. Amusement to judgement. Sometimes both in quick succession. ACT BC puts out cards that one can hand out to people in public when the child is acting up. Really? What is wrong with people that this is even necessary? 1 in 110 kids is diagnosed with Autism now. It really is that common. I've even heard the judgments from my friends - not against me, but other mothers. Comments like "What's the matter with parents these days?! That kid is screaming and she's doing nothing!" Yes. Because that's what is often the best plan of attack. Do and say nothing, and it continues as is. Try to stop it and it becomes a full-fledged meltdown that doesn't stop for hours. Another one: "That kid is just a brat! He's not autistic!" Right. Because you've got a PhD in Developmental Psychology, right? You know, just by looking, that a kid doesn't have it? If you really think you can dx a child with or without Autism, just by looking, while the kid is acting up, you are truly ignorant. It cannot be done. Also, if a kid is bolting through a parking lot, do the parent a favour and stop the kid. Please. Don't look at the parent with disgust and watch the kid run into traffic. Don't tsk tsk. Don't laugh as the parent runs by, frantically trying to stop a child. Help. And I do not give a flying fuck if you get shit for this the odd time. You do it anyway.
Autistic children and their families need our compassion -and this begins with awareness. Today is World Autism Awareness Day, a United Nations resolution in honour of people affected by autism.
Okay. Agreed. But can we please stop referring to people with Autism as autistic? Unless we're going to start calling kids with Cancer "cancerous kids" or kids with Cystic Fibrosis "cystic fibrotic kids", I don't want to see it.
How we deal with this crisis today will affect the fate of these children once their parents can no longer care for them. Not that long ago, people were hidden away in institutions, marginalized from society. If we don't begin planning housing and care options for autistic adults, who's to say we won't see the return of such measures?"
Yes. This is a big worry. The more kids are diagnosed, the more this becomes an issue. But even more than this is the problem of children not getting intervention at an early age. Study after study has shown that the earlier, more intensive intervention a child with Autism gets, the better chance s/he has at becoming a productive member of society. And yet, there is not one government in Canada who provides a proper ABA program for all kids on the spectrum. Not one. BC's program is arguably best, because at least every parent gets the funding to find some sort of treatment. In most parts of the country, the province provides an ABA or EIBI program, but only for a handful of kids. If you're on the waitlist, you get no treatment at all unless you're wealthy enough to buy it yourself. And waitlists can be years long. I know it's expensive. But pay now or pay more later (pdf). And remember that compassion. Paying later means that kids who could have lead an independent life with proper intervention now cannot.
In the absence of strong federal commitment, autism organizations at the local, provincial and national levels are carrying the weight.
Oh my yes. And they don't have the resources to manage that. VSCA (Victoria Society for Children with Autism - notice they didn't go with VSAC) is one such organization. They do great work, giving out respite money to parents, providing a lending library, a listing of available interventionists, and organizing the Autism Awareness walk. They were hamstrung by the Gordon Campbell cut off of the lottery funds. That and donations are what they survive on.
Two recommendations from the report that I consider most crucial are national standards for treatment and research, and a national strategy for equal treatment and services across the country. Courageous actions are now needed to deal with this emerging crisis.
That just seems like such a pipe dream to me. The Harper Government (TM) clearly doesn't give a rat's ass about anyone, never mind sick kids. And they are sick. I am tired of hearing about how people with Autism are "different" and we should respect their differences. Puhleeze. Okay, if someone with Asperger Syndrome is happy and healthy and functioning well, then no, let's not try to "fix" them. But if a child is affected by Autism in a way that makes it impossible for him (or her) to play, have fun, learn to talk, learn to eat, learn to cope with the day to day, well then HELL YEAH, I want to have access to services to help him.

And let's fund biomedical treatment too. Because much of Autism is biological, and can be treated with supplements and medications. Not cured. Not as the only intervention. But DAN! doctors are fabulous, and have done wonders for all three of my kids. And, for that matter, me and my husband. Our is a Naturopathic Doctor, though some are MDs or DOs. We pay for the medical treatment out of our pocket. When we told her, our pediatrician said, "It's Autism. There's nothing I can do for you. You might as well try." So the medical establishment has nothing for us. But make no mistake, this is a medical issue. And our government is letting us down. Autism treatment isn't even considered a health issue by the BC government. It's handled by the Ministry of Children and Families.

So next time you see an overwhelmed parent in a grocery store with a kid who is freaking out, smile and say, "Some days are rougher than others, eh?" Or if she's dragging the kid toward the cashier and is overloaded with groceries, maybe ask, "Can I carry those for you? You seem a bit overwhelmed." Sure, maybe the kid is just a brat, and the parent sucks at parenting. It happens. But it's far more likely that the parent is doing his or her damnedest. And it's at least even odds that that kid is somewhere on the Autism spectrum or has some other developmental disorder. Don't be a judgmental jerk. If you see a parent with a child on a harness (i.e. leash), assume that the child has a habit of bolting into dangerous situations and that despite the parents best efforts, can't be broken of it. The harness guarantees the safety and gives the child a bit of room to be on his own. I cannot count the dirty looks I've gotten for the harness. Hundreds, at least. Most days, I don't care. Some days, I come home and cry. It's so frustrating, because I know if they'd just have the guts to say something, I could tell them about him. But judgmental jerks tend to also be cowards.

I guess it all boils down to one thing: compassion. Be compassionate. Autism is an epidemic - it's going to affect someone you know. Learn about it. And don't assume the worst.