June 8, 2007

Monica Bice: Why I Hate Autism Speaks

To say there has been a negative reaction in the autism community to the revelations concerning Autism Speaks over the last two weeks is putting it mildly. Both parents and adults with autism have become more openly hostile to the group.

Monica Bice, autism mom/activist (aren't we all) had this to say yesterday after reading the Autism Speaks 990 Report.

First and foremost, I was at a critical period in Jade's diagnosis when I saw "autism everyday". We were about 6 mos into the diagnosis. I watched that, as if I wasn't depressed enough already. I felt as if Jade's future was hopeless, especially since we could not afford ANY therapy but what Medicaid covers (which is not much at all some ST and OT), and could barely afford biomed.

I cried for days. They perpetuate depression and hopelessness at a time when parents need to be ENCOURAGED so that they may be happily functioning in their role as a parent of a child with an ASD. I wanna scream when I think of how I sat for days crying, when I should have been playing with Jade.

WTF was Singer thinking? [Alison Singer, AS Executive V.P. Communications and Awareness and autism mom interviewed on "Autism Every Day", told the interviewer that she considered killing her child and herself at one point. Sadly, homicidal/suicidal ideation in caregivers is a reality for some, and is an issue that should be discussed and tackled, but Alison did so in the presence of her daughter and has been harshly criticized for it. -ed] As if Jodi could not hear nor understand what she was saying? That poor little girl. I suppose if I viewed Jade that way, and spoke of killing her in front of her, she would not have made the gains she has.

And she gets paid by them, I think I am gonna be sick.

In contacting autism speaks through the number on their website, their phone reps know nothing about autism but what is on their website, which isn't much.

I have yet to meet anyone from AS that has a child, or family member with an asd.

Espeaks is a joke, more self promoting garbage that doesn't help any parents.

Last year, I was told our regional chapter would start funding local programs. I just got the same story last month, 'next year they will'. I doubt it.

Last year, another mom in my group and I brought our kids and met with Congressman Bilirakis, and convinced him to co-sign the Combating Autism Act. AS took credit for this on their website.

As I was to be part of the committee for the AS first Tampa walk last fall, which coincided with Donna Williams visit to the bay area, I asked Donna if she would take part in the walk, perhaps speak. I was so embarrassed when I had to relay the news to Donna that AS informed me that the walk was not "the right venue" for her to speak at.

WTF? a person with autism SPEAKING (for free I might add) at an autism SPEAKS event, is not the right venue?

Do they want us to have no hope?

I am also very embarrassed that my team raised approx. $20k for this walk. Yet, in April, my entire county could only raise about $8k for our public schools annual autism walk, to fund their autism program.

The schools need the money before AS does. I guess without the "brand name" and marketing power, we were not able to do more. I mean, we couldn't afford fancy pre-walk dinners and events, or give away thousands of dumb ass magnets. Besides, most companies that I contacted, had already given to the AS walk, and were not able to give more.

Lastly, when I asked if AS could help me with state legislation to pass two bills my senator and I worked on, I was told they currently do not lobby at the state level. uh, why the hell not? One to create a program to make Project Lifesaver available statewide and another to create a program to use scholarship money to fund an early intervention program, as Florida has none.

Sadly, both bills died in committee, as I don't get a dime for what I do with AWARE and can't do as much for my community as I would like, nor do I know what the hell I am doing regarding legislature. Hell, I skipped my US govt class (it coincided with my sleep), and have had to learn the ropes on my own. If AS had helped, I am certain these bills would have gone through.

We could have used their help to convince legislature not to make the severe cuts to Florida's developmental disabilities funding.

I mean, why would they want to help people with ASD?

As far as I can tell, they simply want to eliminate them.


Unknown said...

I COMPLETELY agree every single word you say about Autism Speaks. They certainly eliminates every individual attempt that may overshadow their brand name. They have been gathering millions of dollars from people in the name of autism support and my child or any child with asd has not benefited AS' wonderful support at their schools. If AS does not provide any services(neither speech nor ot, etc) what does this famous autism support group-foundation do???

Xpressions said...

I foolishly walked for Autism Speaks for 3 years after they joined forces with DAN - Defeat Autism Now. Have always admired DAN and thought that an infusion of their sensibilities would energize Autism Speaks to provide more support for children and parents already struggling with a diagnosis and less on long term projects like the cure or genetics. I walked until I received their 2008 tax returns and saw that they spent Less than a half million nation wide on community efforts after seeing a 20 million increase in donations. That is less than 1% - Really?!! Yet you continue with the Autism is a World PSA's while spending the bulk of your money on research and projects that will never reach the general population. Do you really think I care that you found a gene associated with autism? Does anyone even know or know of anyone that has ever made practical use of that bit of knowledge??? Geraldine Dawson lives and works less than 25 miles from me and her and her staff shares nothing with even local communities. And yes I know about research protocol - but parents are desperate for answers and possible interventions, so screw protocol.

Bottom line - I WILL NEVER WALK FOR AUTISM SPEAKS AGAIN. Not until they start putting their money and resources toward things that will help my son and kids like him, today before he ages out of the school system. You say you don't know what to do - give me a call or any other parent with a child on the spectrum in a public school setting. We'll give you a few ideas.

Please know that I am venting against Autism Speaks - I'm glad I found your blog and would love to continue to read it and contribute. I have a 13 year old son with autism. He's my world and it just pisses me off to see so many people falling for their public relations. Take care.