Autism is Global, Autism is Local
June 30, 2008 by Kristina Chew, PhD
Filed under Health
Autism is a global phenomenon: The Global Autism Project was started five years ago by Molly Ola Pinney of Dublin (NH), after she moved to Ghana to continue caring for a Ghanaian boy she’d met in Seattle while on assignment with the AmeriCorps. According to today’s Sentinel-Source:
“There were only 30 pediatricians and only one was diagnosing autism,” Pinney said. “The others believed the autistic were possessed. … Within months of coming to Ghana, I was being sought out by people with autistic family members. They said they were alone, that they needed help but didn’t know where to find it.”
After launching the Global Autism Project, Pinney partnered with Serway Quaynor, a Ghanaian who’d been teaching her autistic adult son at home because he had nowhere else to go.
In 1998, Quaynor founded the Autism Awareness Care & Training Centre, which filled in a huge gap in Ghana by providing training and educational services to help children with autism function in society.
I met Pinney a couple of years ago (we had both been asked to speak on a panel about autism following a drama festival on neurodiversity). Her Global Autism Project is an example of how, when it comes to assisting autistic individuals, one person’s efforts can make a big difference. We’ve found this out again and again through the many, many teachers, therapists, college students, and others who have spent time with Charlie and who he never forgets.
The Sentinel-Source notes that Pinney was “recently featured in a promotional video for Autism Speaks, the nation’s top private funder for autism research” and an organization that seems to be seeking to, indeed, be a sort of global autism organization, in additional to a national one. You may have heard of the recent disagreement/brouhaha between Autism Speaks and AutismLink, a Pennsylvania autism organization, as noted in a press release:
AutismLink, the largest autism advocacy organization in the State of Pennsylvania, is standing with Governor Edward G. Rendell and Speaker of the House Dennis M. O’Brien in their denouncement of the Senate Autism Bill. The Bill, HB1150, is scheduled for vote today. (The bill passed.) The bill requires insurance companies to cover up to $36,000 of autism-related treatment for individuals less than 21 years old, but was gutted of all useful language by the Senate’s Banking and Insurance Committee, headed byIndiana Senator Don White, a former insurance broker.
“This bill was carefully crafted to end insurance discrimination of children with autism in Pennsylvania,” said Cindy Waeltermann, President of AutismLink and parent of two children with autism. “Those who carefully crafted the bill understand the system inPennsylvania. Although the bill has been endorsed by Autism Speaks,Pennsylvania families of children with autism by and large reject the bill.”
“Make no mistake,” said AutismLink Executive Director and parent of a child with autism, Rick Bryant, “The Autism Speaks team working on this bill is comprised of individuals from New York, California and Maryland and they are completely ignoring the advice and information given to them from Pennsylvania advocates and/or clinicians.”
This particular disagreement points to something that might be noted about autism advocacy and organizations. There’s mission statements and goals, but—for me—autism is, when you get down to it, local. It’s about one person knocking on our door and maintaining the same compassion and composure to teach Charlie to build with legos or put on his socks. It’s about the clerk in the store who says “he sure likes his sushi” and smiles at Charlie, as I tried to pack too many groceries into one bag and hang onto my wallet. It’s about the email his teacher sent me exclaiming over the great time he had at a field trip to a beading shop: Charlie not only made his creation with “speed and accuracy” but “blew everyone away” with its beauty.
Yes, autism is all around the globe and many have needs everywhere, and all the more reason to listen as carefully as one can to what the locals are saying.
I don’t know if it matters but my browser gave me a malicious program warning on the link “disagreement/brouhaha”.
I think the question in PA is a little broader than an AutismSpeaks v. AutismLink one, since many organizations and individuals have been directly involved in HB1150 for over a year and the emails have been flying for the past couple of weeks. This has heated up after being stalled in committee for months, and with a legislative deadline pretty much here.
The eyebrow raising piece is that according to some email I got yesterday, the National ASA has issued a statement supporting Speaker O’Brien’s decision to pull support of the current amended version of the bill in contrast to AutismSpeaks continuing endorsement of the amended version.
With the families and children of PA in the middle.
Here’s the link.
http://articles.lancasteronline.com/local/4/223800
And a question is: Is a little better than nothing?
I think the point of contention is, with the reframing of the amendment, whether the result is fundamentally a no-change game.
The Governor the other day was stating that he also felt that the amendment was not an improvement and had changed the bill to the advantage of the insurance companies, so it would not be out of probability to see a veto, at least from the reports that I heard. However, the story has been changing fast and furious with every new email on the bill.
And then credit about doing something being given, when there’s actually no real change.
the government should also put more research funding on autism.
I don’t know if you saw but we are having M tested to get help through our local Children’s Autism Center. I am hoping the testing does not take too long. I remember seeing you mention this Center in one of your posts but now I can’t find it.
They have been in town for two years. Oh, how I wish I would have known about them sooner. Sometimes it seems there is local help and I can’t find it and then I feel bad about that. I guess I am just glad we finally found a possibilitiy.
I just read your post and left you a comment! (Sorry to be slow on that.) Am very excited to hear that you were able to tour it—-I noted the “insurance will cover all of it” part right away! I can’t find the post either, digging around—–does it offer a school program or is it mostly testing and services like speech etc..?
There’s a history with the Autism Link and their dislike of Autism Speaks. They’ve been selling anti-Autism Speaks t-shirts on their site for quite some time and are fairly aggressive in their e-mail attacks of the organization.
At the end of the day, I believe this simply is just a difference of opinion on how to achieve the same goal. I can assure you that the 3 employees from Autism Speaks’ government relations department referenced in the article are all parents of kids on the spectrum who genuinely want to do what they can to make things better for families in PA and across the country. There’s no evil, corporate agenda going on here.
Hopefully by the end of the week there will be some meaningful legislation headed to the governor’s desk. We shall see…
I just learned of a new group -
Parents against autism
If you child developed Autism shortly after vaccination and you are angry, you are not alone.
I wonder what the focus of the anger will be on?
I so hate it when they say “so do you think a vaccine did it?”.
no we think its the cell phone.
Really, we should use the opportunity to advocate research funding and acceptance.
no, we think its chlorine in the water that caused it…
ok must confess Im on the 4 th beer
sorry
Hopefully by the end of the week there will be some meaningful legislation headed to the governor’s desk. We shall see…
——————————-
Well, I got a message that said that the amendments were redacted and that the bill as originally intended passed the PA Senate with the next stop the Governor’s desk on Wednesday next week.
Forbes on the PA legislation.
Never had a problem thinking maybe Charlie got “something” from our families.
Coming boom-boom.
Louisiana’s bill was signed into law on the Wednesday/July 2.
Jindal signs autism coverage bill
Interesting comments. I want to assure you that the issues with HB1150 have nothing to do with how I feel personally about Autism Speaks. I worked with their Government Relations folks in tandem for about 5-6 months on this legislation.
When they turned their back on Dennis O’Brien and the PA Autism Community — I got mad. We *all* got mad. They gutted the bill of useful language to the point where Speaker O’Brien (uncle of a child with severe autism) wasn’t even willing to support his own bill.
I was on the inside of this the entire time and I can tell you that the emails against AS were warranted. Even the author of the legislation, Jim Bouder, wrote an anti-AS statement.
Cindy W.
@AutismLink,
thanks for this—-any sense of why Autism Speaks seems to have changed course? Was there concern that the bill might not pass? Very best.
Governor Rendell signs off on HB1150
So now it’s law in PA…
Here is some clarification of the issue from Jim Bouder, one of the key players in Pennsylvania.
****
Friends:
I’ve been asked by many of you to say something about the situation that has arisen within the autism community in Pennsylvania. The situation is that together we have achieved this marvelous victory. Whatever differences we had in the past over strategy and tactics, those differences have resolved themselves in our joint accomplishment.
I believe, as a starting point, there are three facts we can all acknowledge: (1) Autism Speaks’ actions helped facilitate the necessary release of HB 1150 from the Senate Banking & Insurance Committee and (2) Pennsylvania’s parents and advocates succeeded in providing Speaker O’Brien with the additional grassroots support he needed in order to make the necessary changes to the legislation, and (3) HB 1150, the strongest autism bill in the nation, was signed into law by Governor Edward G. Rendell yesterday as Act 62 of 2008. If we can all take a step back and recognized that 1 + 2 = 3, then we can begin moving on together toward bigger and better things. While we can and probably will continue to struggle with the details surrounding 1 and 2, we should all be able to agree that getting to 3 is a very, very good thing.
There are many, many people who deserve our thanks – first and foremost to Speaker O’Brien, who continues to advocate for our children in Harrisburg with unequalled zeal, and his staff who did such a fine job supporting the Speaker’s efforts behind the scenes. Also to Estelle Richman, who has quickly become a national leader in the quest to meet the needs of children with autism and, of course, Governor Rendell who has made passage of this legislation a priority for his Administration, and to those in the Departments of Welfare, State, and Insurance that devoted so much time to help us achieve our goals. In the Senate, Senator Orie is well deserving of our thanks, as is Senator White and his Chief of Staff, Joe Pittman, who also worked hard to make yesterday’s event a possibility. To my Vista family, you all have been remarkably supportive with both advice when I needed it and with patience at the times when this issue required my full attention. To Cindy Waelterman and Karen Woodings who did such a fine job getting the message out to the grassroots at the 11th hour. To Eric Scott who gained a grasp of the issues so quickly and provided much-valued assistance as we engaged in difficult negotiations with HB 1150’s opponents. To all who submitted comments to HC4 or testified at the April 1 hearing. To every parent, grandparent, uncle, aunt, neighbor, and advocate that picked up their phone or sent an email or a fax to your legislator, great thanks belongs to you too.
Over the course of the past year, I have developed friendships with four people who comprise the backbone of the Autism Speaks Government Relations team in Pennsylvania. I deeply appreciate the year I’ve spent working with Eric Settle. Eric is a skilled lobbyist and I learned much from him – much that I hope to take to my next project. I sincerely hope our paths cross again in the not-so-distant future. Stuart Spielman has been a consistent and thoughtful sounding board and his feedback increased the quality of my technical filings and testimony offered in support of HB 1150. Anyone who questions Stuart’s integrity simply doesn’t know Stuart. Shelley Hendrix taught me much about the formerly unfamiliar territory of managing a grassroots push. She championed Louisiana’s counterpart to or legislation and it became law exactly one week before Governor Rendell signed HB 1150. Her commitment to children with autism is unquestionable. Without doubt, Elizabeth Emken had become a valued friend and ally whose vision, in many respects, runs parallel with mine. Her drive to see our nation become a more hospitable place for people with autism is admirable. They are much deserving of all of our thanks and I look forward to working with them in the future.
And last but certainly not least, I thank my family for their support and patience as I joined you all in doing this good work.
HB 1150 being signed into law yesterday was a day worth celebrating. Pennsylvania’s families and policymakers working together with Autism Speaks for more than a year to advance HB 1150 to a place where its opponents no longer had any credible excuses to let it die. We answered every question, we jumped through every hoop, and we cleared every obstacle. HB 1150 becoming law is an achievement that we have much to take pride in.
Going forward, we all need to remember the collaborations that got us here and we need to rebuild them and make them stronger. I intend to do what I can over the course of the coming months to encourage a dialogue that promotes our coming together as friends and, eventually, as a collaborative unit.
If you took the time to pass along my action alerts, I ask that you forward this message as well.
With kind regards,
Jim Bouder
Thanks Autismville! You beat me to it.
(I’ve had some passing acquaintance with Mr. Bouder. He’s a great guy, runs a great school and did outstanding work on this bill/now law).