Last week, I prepared my third blog post for Autism Awareness Month. I wrote it, edited it, let it marinate and edited it again. But I never posted it.
I wrote about my frustrations with the way the media handles autism. My position was that journalists – mostly fed by corporate and not-for-profit press releases – are not properly focused when reporting on the spectrum community. In part, I wrote:
That’s where the negative perspective is born: a perfect marriage between two industries mostly concerned with their own survival. While those writing press releases and newspaper articles try to justify their own existence, the only people putting the child first are those living on the spectrum every day…
You can’t avoid the message the media are selling, which has included the following suggestions:
- Vaccines cause autism
- No it’s the environment
- Kids aren’t being diagnosed early enough
- Early diagnosis isn’t enough
- Autism is a growing epidemic
- No it’s not, diagnosis is a fad
When reporters get tired of these stories, they move on to new ones, all equally bleak. Vaccines are not in the headlines this year – we have new ways of blaming parents in 2012. It’s Dad’s genes now, or Mom’s obesity. Every time I read one of these headlines, I remember that Temple Grandin’s mother was blamed too: doctors told her that if she had hugged her daughter more, Temple would not have autism.
Stop. Just stop. I’m sick of it all…
So why didn’t I post it?
I suppose it’s because I really want to be fair. While it frustrates me that the media focus on autism in a largely negative way, I have to acknowledge that it is not universal. There are positive stories too. Sometimes.
And even though I think writers who are on the spectrum themselves, or parents of kids living with autism have more valuable insight to share than any journalist or organization, I have to be consistent with my beliefs. You’ve heard the saying: If you know one person with autism … you know one person with autism. I am an autism parent, yes, but that doesn’t mean I speak for everyone on the spectrum either.
So instead of drafting a ripping indictment of all media and their flawed perspective, I decided to simply tell you what I want autism in the news to look like over the next year. It’s just my opinion. It’s biased. It’s selfish and it’s utterly honest.
I don’t want to read anything about a cure for autism. If someday there is a therapy or drug that can help those who are the most severely affected by autism, then that’s great. But in the meantime, I don’t want to hear about a cure. I believe that it too strongly suggests that something is universally WRONG with autism. Each person with autism is valuable, offering an amazing perspective on life – making it even more worth living. If we only see something to fix, we have missed a huge opportunity to grow.
I don’t want to know who or what is to blame. Opinions are strong. People are convicted. Evidence points one way and parents still know what they saw in their child, what their instincts tell them. I’m not one of those parents. I don’t know the source of autism and I don’t care to. I can’t waste energy looking backward, asking why or pointing my finger. I have kids to raise. They need my focus – every ounce of it. I need to model adaptive behavior, not blame.
I don’t want to fund studies that provide obvious results. Kids with autism are bullied more than typical peers. Autism moms spend more time with their spectrum kids, thereby earning less money at a paid job. Spectrum parents spend thousands of money out of pocket to pay for their kids’ diagnoses, treatments and therapies. Really? You spent how much money telling us things that we already know? It’s nice to know that the rest of the world sees a bit of spectrum reality, but they’ll understand it with anecdotes as well as with statistics. I say spend that money on spectrum kids instead. Give out iPads or bicycles.
I don’t want to hear arguments about the prevalence of autism diagnosis. Listen, if someone questions whether my son truly has autism or not, let them. It’s their wasted energy, not mine. Diagnosis is not a checklist of yeses and noes in day-to-day life. What some bystander thinks has nothing to do with what happens inside a home, or inside a child’s neurological pathways. How about the media and typical people stay out of it and leave this to the doctors and families as they work it out case by case. It’s difficult enough without the judgments and doubts of naysayers.
I want to hear about who is planning ahead. One of the great things about a free-market society is that corporations and organizations can be forward thinking in their strategies, without getting bogged down by funding and red tape. A smart CEO will, for example, think about a future in which nearly a quarter of his workforce could be on the spectrum. He might do some valuable research about strengths and weaknesses, areas of concern and potentials for growth. He might open his training doors wide and say: Hey, I’ve got jobs that are just perfect for you! And what would he get? Loyal, honest employees who are often better able to focus than their typical peers. When I hear about this kind of company, I’m immediately more willing to engage in business with them. Aren’t you?
I want my son to feel his worth. I don’t want autism to define my son; I want my son to help define autism. He makes it look good. I don’t want him to see article after article telling him he needs to be fixed, or that he’s not going to accomplish anything in life without a lot of help from the government, or that his relationships are doomed before they even begin. Everyone needs help sometimes, and I’m all for assistance programs, where they don’t cripple economies. I’m even more in favor of personal advocacy – friends and families providing moral support and assistance for spectrum kids long after they leave home. But I want my son to go into the world knowing he can depend on himself too. That he’s strong enough to figure things out on his own – and that part of that strength is knowing when to ask for help.
Autism Awareness Month is over, but you and I know it’s just 30 days on a calendar – that life with autism goes on with or without awareness. I hope you’ve read something this month that helps you understand autism better. I hope something moves you to action. If everyone of us makes a difference in just one person’s life, that’s all the advocacy we will ever need.