Though it is generally time consuming, I believe it’s paramount to look at both sides of a controversial subject before or instead of coming to a conclusion. This week I went to a lecture featuring Bob Wright, Co-founder of Autism Speaks. Before the lecture, I had heard about the ‘Boycott Autism Speaks’ movement. I was curious to hear what Bob Wright had to say and if any of the concerns expressed by this new movement would be addressed. The talk was relatively short. He showed several videos that highlighted work that Autism Speaks has accomplished in their 10 years of existance. If you’re not already familiar with Autism Speaks, have a look at their website, which is full of resources. There are many free ‘kits’ that are designed to help those living and working with people who have Autism. It’s impressive.
If you go to www.BoycottAutismSpeaks.com, you’ll be able to read some of the objections to Autism Speaks. Here’s a summary – the senior leadership does not include anyone with Autism, the organization has expressed anti-vaccine sentiments, they have allowed the Judge Rotenberg Center* to recruit students at Autism Speaks fundraising walks, a disproportionately small amount of the budget is spent on services and supports for families, and their advertising presents Autism as a burdensome tragedy for families. But there are other groups that have found fault with Autism Speaks, such as Autism Parenting Magazine and numerous blogs.
*While I was researching online for this post, I got diverted (only for about 3 hours!) on the subject of using aversive therapy, specifically an electric shock device used as a behavior modification tool, which was the subject of controversy around the Judge Rotenberg Center. Personally, as soon as I hear electric shock, I think about 2 things: invisible fences for dogs (which always seemed kind of cruel to a cat owner, even though I understand that they keep pets and people safe) and ECT (electroconvulsive therapy) which enabled my sister to function again after a severe bout of post-partum depression for which she was hospitalized. To begin with, if you can stomach it, you can see a video of a student at the Judge Rothberg Center, Andre McCollins, being restrained and shocked many years ago when he refused to take off his coat – https://www.youtube.com/watch?v=YcxpGKctZMs. It’s DISTURBING. There was an ensuing law suit, among other consequences, after this incident. The use of such a device in this instance was undeniably excessive, inappropriate, and abusive.
However, when it’s used the way it was designed, to deal with extremely aggressive or self-injurious behavior, some parents actually believe it has saved the lives of their children. Parents have pleaded with the courts to allow this form of treatment.Talk about considering both sides of an argument! I challenge you to do some research. Find the testimony of a former employee of this school and an article by parents who swear by the methods used. What would lead parents to approve of this? Are they sick? Well, you decide. What if your child had an intense self-harming behavior such as head banging that was severe enough to cause a stroke or dislodge corneas? What if your child made a habit of gouging their eyes out or chewing on their arms? What if the side effects of the medications the Dr.’s prescribed for these behaviors made you feel like your child was not living at all? If, like me, you’re curious about this issue, check out these links….
New York magazine did a story on the Judge Rotenberg Center prompted by the incident with the student in the video cited above, Andre McCollins. Read the article here –
In response to a television news story about the use of electric shock devices at the JRC (Judge Rotenberg Center), the school made an interesting point – “the notion that because a treatment involves causing the patient to experience pain, it therefore is equivalent to torture does not make sense. By that standard surgery and dentistry would also qualify as torture and should be banned as well.” See the school’s full response –
And finally, on the other side of the argument, is the testimony of parents who support the correct use of the treatment. Read more –
Now back to the objections with Autism Speaks…
What I don’t know is whether Autism Speaks allowed JRC to recruit students before or after they stopped using this method as part of a plan for new students. The article states that, “Since 2009, the New York State Board of Regents has banned the use of the shock device on any new students from New York, and last fall Massachusetts prohibited the use of shocks for all new students.” What seems clear is that some parents with children who have a history of self-harm and aggression feel they have exhausted all other resources. For them, JRC seems to have given them a solution.
However, allowing JRC to recruit during their fundraising walks is only one objection of the boycotters.
The question I can’t seem to find a simple answer to is how the massive funding Autism Speaks raises is specifically used. I’m not an accountant so I can’t seem to reconcile the numbers that the boycotters post and the financial statements from Autism Speaks. Maybe you can. Here’s the link to the statement from last year published by their auditors –
Yes, it does seem as though they spend an inordinate amount of money on their salaries. And on research. I think to most Americans, research in connection with a medical condition can only be good. But the question is, to what end? Bob Wright said in his talk at Elmira College on Thursday evening, that the focus was on, “not a cure so much as treatments.” The organization has invested a large amount of money into their ‘MSSING’ project. Not only am I not an accountant, I’m not a scientist. So I don’t fully understand genomes. Here’s the simplest definition genomes from the NIH website… “A genome is an organism’s complete set of DNA, including all of its genes. Each genome contains all of the information needed to build and maintain that organism. In humans, a copy of the entire genome—more than 3 billion DNA base pairs—is contained in all cells that have a nucleus.”
Will this research help the millions of kids, adults, and families dealing with Autism? It would certainly help to know if a child has Autism during pregnancy if it meant they would get early treatment. Because I am a special education teacher, I can say from experience that early identification and treatment hold great potential for children with Autism. What else might research accomplish? One thing that has puzzled me in recent years is that we rarely see kids with Down Syndrome anymore. What happened to them? ABC News reported, “An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston”. Is that something that research will bring about? That seems pretty awful – that this generation is raising money to fund research so that there will be fewer children born with Autism because more mothers-to-be decide to abort. That said, I’m also not the parent of a child with Autism, or any other developmental disability. As a special ed. teacher, I have the same benefits of a grandparent. I get to know and love these children 25 hours a week but then I put them on the bus and go home to a quiet house and time to myself. To me these children are like treasures – as they learn to discover the world and their ability to function in it, they are joyful and proud. And to participate in it is such a privilege. So I come back to the question of – research to what end?
And now my question to families – is raising a child with Autism a tragic burden? Having worked with so many of these families over the years, I recognize that it takes a loving, resourceful, and committed person/family to raise a child with Autism. But there are some things in life that are both a burden and a blessing, aren’t there? If we want to prepare families for life with a child with Autism, they need to know about both parts. And they need to have all of the resources and support we can provide. Could Autism Speaks provide more? Yes, and I hope they will hear the voices of families asking for that.
In conclusion, I’m grateful for the awareness that has been generated by Autism Speaks, although watching the videos the other night at the lecture made me a little apprehensive about the thinly veiled grandstanding. Personally, I wouldn’t donate money unless there was a shift in priorities and more forthcoming disclosure about the ultimate goals of research. But I also hope that people who want to help support people and families of those with Autism don’t turn away from that desire because they don’t like the direction that Autism Speaks is going. The good news is that there are so many more ways to get involved besides pledging and walking.
Let’s hear what you think!