I am sure if you are reading this blog you have, at a minimum, HEARD of Autism Speaks. What do they do? How did they start? Well to sum it all up- it was founded by Bob and Suzanne Wright-grandparents of a child with Autism. Bob Wright was also the vice-chairman of General Electric. Their daughter, Katie Wright, is the mother of said child and disagrees on MANY levels with what her parents believe and in turn, what Autism Speaks stand for. She is very outspoken on the topic and her beliefs on the vaccine-Autism connection.
You can see Katie Wright's interview with David Kirby (author of Evidence of Harm) here:
Katie Wright interview part 1 and
Katie Wright interview part 2 and
Katie Wright interview part 3
...and what was Autism Speaks' media response to Katie's interview?
"Katie Wright is not a spokesperson for Autism Speaks. She is our daughter and we love her very much. Many of Katie’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks."
Autism Speaks is by far the largest organization in the US - and one of the largest in the world - dedicated to autism-related research, funding, and related activities. A national Autism Speaks Walk is done annually- with walkers and families raising MILLIONS of dollars. My family and friends have participated in this walk in Ohio and in Arizona for 3 years- raising a chunk of money ourselves. We did this to help further research and awareness, help with grants for families needing help (ours included) and help with insurance reform.
"We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals."
Sounds amazing doesn't it? What a wonderful initiative. But then I started hearing rumblings in the Autistic Community. Things about all the money being raised by families like mine for AS was not being spent on what it was supposed to. According to the 990 Tax forms- AS had 28 employees who made over 100K for 2009. The total that was spent on family services - $814, 016. Total payroll? $16,565,364
The total revenue generated by Autism Speaks- $45,524,396. These are not numbers I made up. These numbers are all part of the public record that you, me or anyone can see.
Now- I know it takes money to run a company. But when the President makes over 300K a year and there are at least 28 employees who were compensated over $100K and the money spent in help for families is a fraction of that- I have to start questioning myself. The money that mine and thousands of families made- where did it go? To fund travel expenses? Advertising campaigns? Did any of the money I helped raise help another family?- did it help mine? No- it didn't.
I applaud the Light it Up Blue Campaign in that it does promote awareness for the growing epidemic that is Autism. But we are beyond awareness. We need more understanding- we need more programs in place for Autistic adults aging out of school. We need more of this http://www.theautismtrustusa.org/ , and less of the cutesy blue Autism logos. We need more and better insurance reform in ALL states. We need research into causes- to STOP these numbers from growing. What we don't need is more expensive advertising, ridiculously overpaid CEO's, and millions in research grants that could been going to "connecting families to resources".
I have been a voice for Autism Speaks for 3 years. I have walked, fundraised and made people believe in their cause. I have done all of this under the assumption that when we needed it- we could go to them for help- probably financial- to get my son much needed social skills training, or special swimming lessons so he does not become a statistic, or whatever else Autism Speaks has promised to help families connect. You know what I have got? Brochures- lists of agencies in my area. handy checklists and of course- asked to raise more money. Things I could have got on my own. I HAVE applied for grants to help my son- when we couldn't afford social skills classes and insurance didn't (and still doesn't) cover it. I was thanked for my interest and told that due to the volume of requests they had to assess the severity of each case and award grants to those in greater need. That is fine- I know that I am lucky, my son is lucky, he has us, we can care for his basic needs. But- if all the money that was being raised was being put to use where it was supposed to be- my paltry request of $1000+ would have been a drop in the bucket.
Thanks for the big let down Autism Speaks. I defended you until it became apparent that you didn't deserve it. For all the parents out there that disagree with me- and Autism Speaks HAS actually helped- great. But there are so many organizations out there. Please- do your own research into each and every one before throwing your money or your time at them. They are not all what they seem to be.
Nate's therapy center is Lauren's Institute for Education.
The money donated to this center will directly help fund Nate's therapy and the supplies they need.
I will continue to put on my blue shirt and walk alongside Nate's teachers and classmates to raise Autism Awareness..but MY money, and all fundraising I do, will be put to use locally..where Nateman and kids in my area can benefit directly from the generosity and love of our family and friends.
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