@AutismSpeaks does not speak for this family

Originally published at Yeah. Good Times.

Written by jillsmo

I haven't had much of an opinion about Autism Speaks (AS) before. I'd heard the rumblings but never paid much attention, and what I did pay attention to I found mostly annoying. I'm a Nonprofit Bookkeeper  so it seemed to me that the bulk of the argument against them, which had to do with their Accounting, was based on a general misunderstanding of how it works in the world of nonprofit finance. But I never really did anything about it, mostly because I didn't care all that much. 

But then today there was this: Autism Speaks to Washington - A Call for Action, and as it turns out, I do have something to say about Autism Speaks. Who knew??

This press release is classic fear mongering designed to get the attention of people who know very little about the issue, so that they will open up their pockets and pour forth with valuable contributions. They're trying to scare you into thinking that the world is coming to an end because kids are autistic, so that they can get attention for themselves just in time for their Year End Campaign.

And who am I to argue with an effective fundraising campaign? As a Bookkeeper I say you should do whatever you need to get your issue out there and get some money in the bank before the tax year is over. The problem is that people who don't know any better (politicians and the mainstream media) think that Autism Speaks actually speaks for the autistic community, they're huge and they're famous. They do their job well, therefore they get noticed and they get press.  They’re the first results you get in a google search about autism and they’re the people interviewed in news stories. Families seeking out information to help with a new diagnosis will find them before they find anything else, and that's the reason why I have to write this post now.

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.

This statement accurately describes the lives of some families living with autism, and it would be wrong of me, or any of us writing about this issue, to deny that this is reality for a lot of families. But the problem is that it’s not the whole of the reality of autism, and yet other experiences are rarely mentioned in AS’ dialogue. Autism is often described by AS as a monster that tears into families and rips apart homes, therefore it must be stopped before it can be started, all while claiming that they speak for all of us. In this press release, they talk about the three million moms who have autistic kids. That's me they're talking about. I'm one of those three million moms. But our family’s experience, and so many others like us, hasn’t been the awful nightmare they make it out to be. Sure we have our struggles, but overall we’re a happy crew and we’re not victims of some kind of Autism Creature. We are living. We are thriving. We are flourishing. Don’t pity us because my kid is autistic; that may be what Autism Speaks wants you to do, but I’m telling you now that we are not victims of a monster. He is autistic, yes, and he’s also awesome,and I refuse to have him growing up believing this AS rhetoric that he’s a monster who needs to be stopped.

Again, I want to stress that I know my experience doesn’t belong to everybody, the problem comes when you are unable to recognize that your experiences are different from other people’s and that other people’s opinions are therefore invalid just because they're different from yours. It just doesn’t work that way. If it’s your goal to create a national dialogue about something, but you only draw information from yourself, by definition you are actually an exclusionary group that is not representative of the whole.

This is a national emergency. We need a national autism plan – NOW.

Well, no. This isn't an emergency. Nobody is on fire, nobody has gone missing, nobody is gravely ill, nobody is dying. Those are faulty analogies. And I think that we don’t so much need a national plan but a national dialogue. One that talks about early intervention services, about school district services, about other therapies that have proven to be beneficial, about transition to adulthood and about living independently as well as the stresses that families face and the lack of supports that can push people past their breaking points. It should be educational, respectful, and most of all inclusive. You can’t have a national anything if you're only actually including one percentage of the population you’re claiming to represent. An effective dialogue of any kind will include all voices, not just from extremists. And Autism Speaks, despite their popularity, their size, and their apparent reputability, is nothing more than a well funded extremist group.  In my opinion and experience they don’t represent the majority of people who are living autism right now.

I’m certainly not claiming that I have any answers, this is a hugely complex issue and frankly just writing this post this has taken up all of my energy on the subject; I'm tapped out. And while it’s impossible for one voice to be representative of all of us, AS just seems to be particularly bad at it. Yes, we should craft a national message, but it should be written by reasonable minds and reasonable people, not by extremists. Not by Autism Speaks.