Letter to the editor: In defense of Autism Speaks

Jeffrey Zide’s opinion piece on Autism Speaks presents a false impression of the nation’s largest autism science and advocacy organization.

Zide  decries supposedly “shady finance” but ignores recent data which show that 72 cents of every dollar raised by Autism Speaks in 2011 went to fund its programs. This exceeds the Better Business Bureau’s  standard for charity accountability .

Zide criticizes the volunteer involvement of the families of people with autism and quotes Prof. Jacob Hale’s comment that parents’ and grandparents’ “claim that they speak for (their autistic children and grandchildren) is offensive.” This view denies reality. Parents are legally empowered to speak for their minor children and many, like my wife and me, are the court-appointed conservators of their adult children. Who will advocate for the increasing number of individuals on the autism spectrum if not those closest to them? As the father of a non-verbal son with autism, this section was particularly disturbing to me. To see your hopes for your child dashed by limitations imposed by autism  is disappointing. Personally, despite his autism, the day my son was born was and remains the happiest day of my life. When we received the diagnosis, my wife and I instinctively decided to do what we could to help our son achieve a productive and fulfilling life.

Some parents have taken the news harder and some marriages have been rocked by stress and disappointment. While our outlooks and approaches may differ, I would never deny the validity of their feelings. To criticize those parents – particularly from the comfort and luxury of eloquence and high function – is unseemly and disrespectful.

Zide suggests that Autism Speaks is focusing on vaccine-related research.  Autism Speaks has always taken a “multiple line of inquiry” approach to autism research. It funds top researchers in the United States and around the world without limitation to “pet theories” of causation. Autism Speaks has committed over $173 million to broad based  research and has leveraged more than $300 million in additional funding. Some of the research has addressed the concern that childhood vaccinations may cause autism; these studies have not found a link between vaccines and autism.

Some have criticized Autism Speaks for conducting too much research on vaccines. Others have criticized Autism Speaks for conducting only a limited amount of research on the issue. Autism Speaks strongly encourages parents to have their children vaccinated to protect them against serious diseases.

Zide’s claim that  Autism Speaks does not engage in social justice or advocacy/activism efforts is incorrect. I’ve been personally involved in legislative advocacy of  laws providing government support for the needs of autistic individuals. Autism Speaks was a leader in the drive for Congressional passage of the Combating Autism Act, is currently spearheading a state-by-state initiative for insurance reform requiring coverage of autism treatments, and is a proponent of the ABLE Act, which would legalize tax-advantaged savings accounts to help assure a secure future for people with disabilities.
Autism Speaks has initiated programs to help improve people’s experience with autism.  These include a guide to establishing a treatment program for the newly diagnosed child; Community Service Grants to organizations serving the autism community; and  The Transition Tool Kit, to help people with autism achieve  a meaningful and productive adult life.

Jeffrey Zide doesn’t see the value in all this, but fortunately many others do. Just last month more than 30,000 people turned out for the Los Angeles Walk Now for Autism Speaks event and raised over $1.6 million to support Autism Speaks’ important work.

-Stanley Landes
Los Angeles Chapter Advocacy Chair, Autism Speaks and CSUN professor of journalism.

  • Without a VOICE what chance do these children and Adults have? I have a 16 year old Profoundly Autistic Grandson who, at one time when he was two, could talk, but was vaccine injured Autistic at the Age of  2 1’/2 when the ignorant Doctor piggybacked his shots and he was allergic to Mercury which was in the shots (Thermasol, I believe they called it, an additive to preserve it.) Now, my beautiful, silent, sixteen year old Grandson, has beaten his ears so much one of them is Cauliflowered, he only yells if things get too loud, he does not speak and he is in a Home far from his family. And, because we cannot afford the treatment he needs, he now belongs to the State. How would that feel to you? For your child to be ripped from your arms at 12 and placed in a Mental Institution until they could find a home. He was there, in El Paso for over a month! In a MENTAL INSTITUTION with crazy adults! Would you still gripe about an organization that you think is “shady”? That may be trying to help children like him?  My Grandson, exists in a world that, if a certain Healthcare Bill passed, may be uprooted from the “home” that he’s known for four years and thrown into Mental Institution that is LOUD, ABRASIVE AND CRUEL. 
    I have another Grandson. He is five years old. He is Autistic, also.  He gets treatment, sensory training in school and now can count to 100. We shout for joy at every number and little word he says! So why are you griping? Why are you making a deal out of a few cents. If they only gave what was required, I would be happy. 
    We watch Sally Struthers and others beg for money for children outside our own County. Poor, pitiful, starving children whose Parents could do better but won’t. Keep it at HOME. Shame on America for allowing 1-150 children to become disabled. What is going to happen to our Country? Who is going to be the Future Leader with those odds? Our Government will have to House these poor Adults who had no help, if it were up to you and others like you that want to “nit pick” every single organization. We need all the help we can get. 
    Oh and by the way, I have two other Grandchildren, both boys, both normal, one the same age as my oldest Autistic Angel. I look at the two of them and weep. One is going to college in two years, the other can’t even go to the bathroom without help. The six year old is talking like a magpie, getting high marks in school and thriving,  while the other is being coached by a Teacher who is marvelous. But, he needs help with PAID sensory training OUTSIDE the school. His parents can’t afford that! Do you know that most dentists will not work on Autistic children? They have to go to special ones. He was diagnosed Severe. Now he is not. Prayer did a lot to help that. But as my religion says, “Faith without works is DEAD”, so, I can have Faith, but I know the work must come and I can’t do it. I don’t have the money. 
    Why you don’t you write Washington? Why don’t you see what our wonderful President DOESN’T care about? Then come back and write an article about Politicians and greed and the ending of care for so many. He doesn’t care. Change? Yeah, I’ll say. But this Organization isn’t about Politics, it isn’t about Greed. I’ve seen only HOPE from every single blog and newsletter. But someone wants to tear it down? SHAME ON YOU!

  • I agree that Autism Speaks has been successful in raising monies for support of autism research.  From my own perspective and that of many parents that have children with autism, I would challenge Autism Speaks to fund research that would identify/confirm the cause for these disorders.  My research has shown that the greatest risk factor for the child to develop autism is a poor diet.  I do realize that to identify the cause for autism is to be able to predict and prevent the problem. For the families and children this would be a good thing.  To my knowledge none of the support organizations nor the government agencies nor the autism research facilities like The Mind Institute have even considered the lack of adequate nutrition to be the problem.  They will find the cause very quickly if they simply look at what is in the diet of these children compared to the composition of healthy brain tissues.  With the focus of supported research looking only at all other factors for cause they will never find the cause and we will still be funding autism research for another fifty years with no idea as to cause.  We are still at the starting gate in autism research that would identify the cause..  

    • i have one vaccine injured Grandson. We saw it happen before our eyes within days he lost his ability to speak and react. I have another that, though he has the gene that would kick it off, was handled differently and not given any injections with Thermasol in it. He is lower on the spectrum, learning to talk, counting and we are loving to hear that voice. The oldest of the two, from different parents, my son and daughter, is 16, profoundly Autistic and lives in a Home for Autistic Children. Our heart breaks because the State now owns him. We can’t even afford to go and see him! Whatever was done, was done in a hurry because these odds weren’t there when my children were small. And when I was a child, it was almost non existent.