Tuesday, July 6, 2010

Autism Speaks

I'm sure this will be an unpopular post, especially among my autistic readers. Guess that's okay, it wouldn't be a good blog if I only said things people like.

Other autistics have questioned why I support Autism Speaks, both through Twitter and e-mails. I believe they deserve an answer, that took some thinking to phrase it correctly.

Autism Speaks has a rocky history with autistics, after all they used to be a group with the name of "Autism Speaks" while not having any actual autistic members. However, I honestly believe they are trying to change for the better, repair the relationship. They added John Robison, a well known autistic and author. As well as other steps and gladly answered an e-mail from me.

Here is the contents of the e-mail Q&A:
How do you think involving Mr. Robison in Autism Speaks has affected your organization?
John Robison joined Autism Speaks’ Scientific Advisory Board and Treatment Advisory Board earlier this year. He has been a great asset to our organization and in addition has posted some very insightful blogs on both our site and his own popular blog. John expressed his feelings about why research is important and what it means to him and the autism community – his insight has been great. We continue to be very pleased to have him onboard.

Has the response been overall positive or negative?
Overwhelmingly positive

What kind of actions is Autism Speaks planning or already doing to greater include people on the Autism spectrum?
Our new blog and facebook page has really opened us up to encouraging people to comment on all aspects of our mission. In addition, we invite family members as well as individuals on the spectrum to submit stories. John joined us this year at IMFAR and brought Wrong Planet’s Alex Plank, an adult with Asperger. They interviewed scientists, parents and organizers to learn more about the science. Alex has been posting portions of these interviews on his site. In addition, college student Kerry Magro has been hired by us to blog about events related to his major. He is on the spectrum as well and wrote about the Autism Speaks 400 in Dover, the NBA Awards event and many more. This has been a very natural progression for us as we hit our fifth year and it’s been very exciting to see this new collaboration within the community.
(e-mail exchange with Dana Marnane from Autism Speaks)

Are they perfect? No, of course not, they are a group of humans. I've yet to meet a perfect human. However, I think it would be in the advantage of the autism community to work WITH a large, well known group that seems to be reaching out to people on the spectrum. Realistically, I don't picture a parent of a nonverbal kid being very comfortable in a GRASP meeting or even relating much to it. However, they are likely to hear of Autism Speaks; because they do a lot of advertising. I'd really rather a parent go to them than go Google "autism treatments" and feed their kid some random snake oil. Or get so frustrated they do something they regret.

Autism Speaks is not my favorite group. I'm lucky enough to have a well developed Autism Society nearby who I can easily call or e-mail and get support from. (if you're in the Tidewater area of Virginia, that would be
Tidewater ASA ) However, I've heard from parents in other parents of the country that don't have a local Autism Society that they feel they can go to. (yes, my favorite group would be the ASA)

Autistics need to be a bit more tolerant of Autism Speaks; they aren't trying to be an enemy or exclude us; in fact they are trying to work with us.

(Comments are welcome, please refrain from cursing)


Amanda Broadfoot said...

Thanks so much for the update on the changes that Autism Speaks is making. I had no idea. I agree with you that working with a group with this kind of financial, media and popular support has to have its benefits -- particularly in light of their positive response to certain criticisms.

I'm going to give them another look.

Corina Becker said...

You make a good point. It is better than some of the alternatives out there.

And so, I will talk to Autism Speaks people. I understand that no change can happen if we complete reject them.

But until their language in describing autistic changes, their financial practices of high CEO salaries changes, I will not support fundraising efforts for them. Not when I know that the majority of the money is being mis-spent.

Until then, I will support John and the hopes that he can make changes from the inside.

Stuart Duncan said...

I was going to reply earlier but got sidetracked:

I have been considering a post very similar to this for a little while, may still make it.

Ultimately, there's very few organizations, charities and people out there that don't seem to more interested in book sales, t-shirt sales, personal profits, personal fame... and so forth. I struggle to find any that are truly in it for the sheer goodness of doing it.

In the end, I refrain from lashing out at any of them because pro's and con's aside, they are all raising awareness in some fashion or form... whether properly or not, self motivated or not, they're getting people talking and digging deeper.

Jaclyn said...

Thank you for this. I donate money from a jewelry fundraiser to Autism Speaks and frankly was surprised when I heard some negative feedback. I can understand the concerns, but I don't know that _any_ group dedicated to research and learning about autism can be a bad one.