Friday, June 3, 2011

The Big Let Down

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.  They were the one of the first organizations I turned to when my son was diagnosed with Autism.  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 Michigan for 3 years- raising over $3000 ourselves.  We did this to help further research, 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 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 AS 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 2 grants- both for $1000- both 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 does speak, he 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 AS 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.

The Puzzling Piece
National Autism Association