Saturday Morning Conundrums

The sounds of mowers (ours among the others) can be heard from where I sit inside in my recliner, hiding behind my laptop, trying to ignore the chaos that surrounds me. The kids have gone quiet in their rooms; I can no longer hear peals of laughter, squeals of delight and the rush of their running feet as they run from room to room, wrapped in their play. I've separated them each to their various rooms to clean, and doors have slammed shut, hiding any noise of electronics I failed to confiscate before demanding they de-tornado their rooms.

I've been up for hours, wandered through blogs, read those criticizing Autism Speaks (like I did this week), read those supporting it, and wondered if this constant warfare has contributed to my migraine. There are good posts out there that raise reasonable questions, like Zoe's post on why she thinks people shouldn't give money to AS. Her criticisms are reasonable calls on Autism Speaks to alter its way of conducting affairs. It's reasonable to expect autistic people to be on the board of an autism non-profit, but I wonder, given how Autism Speaks came into existence if that's likely to happen. I agree that too little is spent on families, but that was never AS's mission, so doubt it will change anytime soon. I think compensation issues are legitimate concerns, as well, and wonder why Geri Dawson collects the highest salary while still working full time at a university in North Carolina. Lydia Brown's post, explaining why she felt Holy Cross shouldn't support Autism Speaks' Light it up Blue campaign also raises interesting points worth considering.

While common arguments against AS's research is that it's eugenic in nature, I  know that not all of the research is geared towards prevention or cure, and certainly  not towards prenatal testing in order to eliminate fetuses with genetic markers (which I am against). While most money goes to research, the Autism Speaks website provides valuable resources for families. I've used the tools that Autism Speaks has created for families, from their first 100 days to their school toolkit to their transitioning into adulthood toolkit.

It would be easy and much more comfortable to paint Autism Speaks as all villain or all saint, depending on where you're coming from, but the reality is it is flawed like the people who run it and the people who support it. We're all flawed, all caught on the various tenterhooks of competing demands and needs.

Every autism organization necessarily reflects the biases and perspectives of their founders. Autism Speaks gobbled up pro-cure, pro-vaccine-causation groups, and that creeps through. It's also an evolving organization, and it will try to please everyone who gives money, often resulting in pleasing no one. It's no different from famous autism speakers who always make sure to tip their hats to the anti-vaccine crowd and the DAN crowd at every speaking event while also trying to please those who don't buy into vaccines as a cause or chelation as a cure. It's the quintessential attempt to have their cake and eat it, too: to offend no one so much that the money stops coming in.

The National Autism Association favors the vaccine-caused-it, woo-loving crowd, but they're not all bad. They stand against restraint and abuse; they provide information on how to keep your loved ones from wandering, and what to do if they do wander.

The Autism Society provides a large conference each year with something for everyone, support groups in several cities, but it also favors facilitated communication.

ASAN stands strongly against restraint and abuse and represents autistic individuals. Instead of sending a message of autism as a tragedy, it celebrates autistic voices, and lobbies for legislature that will benefit autistic individuals. It also supports facilitated communication, in an attempt to include all autistic individuals and offend no one who's doing the facilitating.

My point is that every single organization will stand for some things we can support and other things we can not.

We can choose to not work with them at all over areas of disagreement or we can choose to stand together on things we agree on and respectfully disagree on areas we don't.

We ought to be free to voice our disagreements without being thought to be traitors--if blind obedience and complete agreement are expected--that should be a red flag to everyone.

The result of choosing to work with organizations with whom you don't fully agree with can and is often an uncomfortable feeling of cognitive dissonance. I wish I could say I'd found a way through that discomfort, but the reality is that we should feel that sense of discomfort; it keeps us agitating for the things we believe in, encouraging the organizations to consider other perspectives, and making it clear that we are not blind followers but are instead partners of equal value.

So I read all the posts relating to different viewpoints on the various autism organizations and I keep myself open those perspectives. I respect other people's right to make up their own minds and respect them enough to not push my perspective on them in their places.

Respecting individuals' autonomy means allowing dissenting voices and not trying to shout them down. Our society, not just the autism community, doesn't do a great job at that, at least not online or in our legislatures. It's a shame because it is this unwillingness to consider other points of view and compromises that hamper our ability as a nation to solve the very real problems we are facing.


farmwifetwo said...

I once had a membership with Autism Ontario but they were so entrenched in the "ABA is wonderful" stance - and still are - that they didn't interest me. Also the nearest branch is an hour away. But, I did buy another years membership many years ago to hear Temple Grandin speak... otherwise I wouldn't have had the chance.

I also tried a support group - 30min away - that lasted one meeting.

Nobody reflects your POV 100% and I'm not convinced these organizations are effective on an individual level. They pick and choose what they think is right, they tell the gov't, they pick and choose their information and if they get enough lobbying going they get people to buy into it without asking questions.

Which is why if it doesn't directly impact me and mine... which is why I have a membership in my local Community Living... not interested. Given the chance I will "comment" about these organizations and bloggers to those who look at the "big" picture. Especially those that "swarm".

melbo said...

Yep - agreed. I have stopped participating in certain groups and forums before because it was all about keeping to the party line and shouting down or discrediting those with whom you disagreed.

Very often the ones who were driven out were the ones most necessary for maintaining some perspective. If we are all just agreeing with each other what is the point? How does that advance anything or do anyone any favours?

kathleen said...

You make excellent points.

I rarely join discussions anymore-at least online. Anonymity is a dangerous thing..sure, people can claim one thing or another-even put their name to it..and use that claim to back any statement that they make. I.E-"I have this "blank"**-therefore MY opinion matters more" People become afraid of offending this person-so they pander and use this person as their reason for doing or not doing something. Instead of looking and weighing from their own personal perspective. Online-we don't always know who we are talking to. What and who somebody says that they are-may be very far from the truth.

I prefer having a discussion with someone who is willing to express their OWN opinions while at the same time-willing to (even if they don't agree) listen to mine. There is just way too much "you have hurt my feelings!! ME ME ME! It is ALL about ME!And if you REALLY respect me-you will believe the way that I do!!!" going on-online.

I find that working face to face in the community is much more interesting, diverse and satisfying in the end.

**-anything from religion, color of skin, disability, ability..etc.

Anonymous said...

"It's reasonable to expect autistic people to be on the board of an autism non-profit, but I wonder, given how Autism Speaks came into existence if that's likely to happen."

And this is exactly why I suspect that I will never be able to get behind Autism Speaks. Even though I think they *are* trying, in some ways, to do better by actual autistic people. So long as the thrust of their mission represents that of their founders, who hope to one day "recover" their real grandson from autism instead of loving the autistic grandson who's in front of them. It comes through in their stance towards autistic people. A recent facebook poll they posted asked what viewers' connection to autism was, and the options were something along the lines of: a. parent or family member, b. educational or health care professional, or c. no direct connection.

They listed *no direct connection* over *person with an ASD* as a significant reason why someone might be viewing their facebook page. Like, wha?

To be a defensible organization, AS would have to repudiate the goals of its founders. I don't see it happening soon.

Kim, if you think you can work any good with this organization from the inside out, well, good luck and godspeed. I couldn't do it.

K Wombles said...

Chavisory, to be honest, somedays I find it very hard. Their refusal to say that abuse, restraint and torture at the Judge Rotenberg Center is a bad thing bothers me greatly. Some of their staff's poor people skills (as demonstrated on the internet when they post on people's blogs--especially how they treated Kassiane) are serious issues. And certainly, their failure to include autistic indviduals as equals at the power levels is deeply problematic.

The organization is an admittedly mixed bag at best. I keep reminding myself that I help with the walk for the families who attend, that I involve my students because service to the community is important, and that only by working with the organization can I hope to have a constructive dialogue with them. And I remember the things that they do well.

The other autism organizations have serious issues as well, but if I can't reach out and support the good each does while acknowledging the problematic, I don't see how we can move forward and create real change.

Lori said...

I appreciate your breakdown of the different groups and sensible point of view.

I have a friend who is a big fundraiser for AS. I wince everytime she solicitations, especially in the name of her son.

Although I am not an enemy of AS, I'd rather give my money to other groups.

I long to see is solidarity for the common goal of a good quality of life. For parents, and for children both.

Jen said...

I love this post! A lot of the time I have no clue what org to support b/c there is always someone I know who hates whichever one I am looking at. I tend to look at them just as I would any large organization. Most of them do well what it is they set out to do. Unfortunately, some people just expect more, or for each group to do what they think is (the only) right thing. It's probably a better idea to find the good, instead of always looking for the bad.