Speaking Out About “Autism Every Day”

By Alison Singer
President, Autism Science Foundation

This post is in response to Marc Rosen’s examiner.com post “Why Autistic People Don’t Like Autism Speaks”. http://www.examiner.com/x-21742-Long-Island-Autism-Examiner~y2009m9d7-Why-autistic-people-dont-like-Autism-Speaks#comments. I am posting here because of the 1000 character limit at examiner.com.

In  his blog post, Marc Rosen writes, “Another huge reason why autistics hate Autism Speaks is their film ‘Autism Every Day’, in which they film their then-Executive Vice President, Alison Tepper Singer, saying that when her daughter was first diagnosed, she seriously contemplated driving her car, with her autistic daughter inside, off a bridge… By her own admission, apparently, she would have preferred to murder her own child than to have an autistic child.”

The film Autism Every Day was produced several years ago, and I still get questions about what I meant by my comments, particularly the comment about  contemplating driving off the George Washington Bridge rather than put my daughter in a school for kids with autism. Everything I said in the Autism Every Day video was an honest reflection of how I felt at the time. When I went to see the schools that the New York State Department of Health recommended for my daughter Jodie, I was sick to my stomach. It was out love for her that I would never let her be in a place like that. It brought back very difficult memories of when my brother was institutionalized when we were kids. I certainly don’t want to kill my daughter. I love my daughter and am incredibly proud of her and of all the progress she has worked so hard to make. I am part of this community because of my love for her. The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did. If I had the film to do over again, I would certainly try to make that point more clearly than I did. I certainly did not mean to offend anyone or suggest that Jodie’s life (or anyone else’s) was not valued.

After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options. This was at the start of our journey. When Jodie was diagnosed, I didn’t know what to do. I called the New York State Department of Health, said that the neurologist thought she should go to a special education preschool, and asked them to give me some names. Given the lengthy waiting lists at most schools, try to imagine the type of state supported school that has an opening in March. Fortunately, after this terrible day I connected with other parents in my town and found a great special education preschool where Jodie thrived. We had to wait a year for a spot to open, so before she started we did a home ABA program. That therapy also helped her tremendously. I had no idea these options even existed on my fateful “school visit” day. But the truth is that after I visited the state schools that day I pulled my car over to the side of the road and really did think about whether we would all be better off if I just drove the car off the bridge with the two of us in it, and whether that might spare her the suffering that my brother experienced in Willowbrook. Those thoughts were not rational, although those feelings were real. I am not the only mother to ever experience those desperate thoughts. Fortunately, it didn’t last very long and after a few minutes I drove home. Many parents called and emailed me after they saw the film and said they had experienced the same moments of desperation. Please know that those feelings stem from love and desperation. We love our children.

I have spent a lot of time in the last year or so speaking with members of the neurodiversity community and have learned a lot from these conversations. These relationships have been very productive for me, and I have a much better of sense of the issues now. I have changed my behavior and rhetoric in response to some of the very good points people have made, and continue to speak frequently with many of the leaders of the neurodiversity community. There is still one big issue, however, on which we disagree. I do still feel that genetics research is the best chance we have for understanding the mechanism of action of autism and creating targeted therapeutics. This remains as a sticking point in my relationships with many of the leaders of the neurodiversity movement, although I do think that we have tried to be friends and continue to talk about this issue. I also don’t think that a belief in the importance of genetics research detracts from my eagerness to support research into supports and services and expansion of funding for this critical area. I have been extremely vocal on that issue at the IACC meetings.

I also think a lot of these issues stem from the heterogeneity of the autism diagnosis. I truly pray for the day to come when my daughter can blog or self advocate. She still has a long way to go in overcoming significant cognitive challenges. But I look at the type of work that Dr. Mark Baer is doing at MIT and am really hopeful that Jodie and other kids like her will someday be able to benefit from that type of research.

10 Replies to “Speaking Out About “Autism Every Day””

  1. Thank you for this Alison. I’m glad you addressed this issue and can so relate to your experience. I hope we can all continue to move forward and make the world a better place for those we love with autism.

  2. Ms. Singer, you’ll find my response back at the original article. You’ll find I’m accustomed to keeping my responses under 1000 characters.

  3. Hey there. I’m really glad you wrote this piece. Just last night I had talked with one of my older kids about the Autism Every Day film and how it had horrified me at the time.
    It means a lot that you’ve attempted to clarify your remarks and I understand what you meant, now. I guess I have just been lucky to have NOT had anyone ever tell me that my son would need to be institutionalized or sedated into submission.
    Kudos to you for having the courage to speak up at various stages of the game. If anything, it illustrates our ability to adapt to challenges and the undying love we have for our kids.

  4. Alison, it’s not easy to put yourself out there. You’ll always find someone to criticize you no matter what you say. Kudos for your courage and for being such a great advocate and fundraiser for our community.

  5. I appreciate so much that you’ve been willing to put yourself and your family in the public eye in order to bring attention to the need for better autism services. I regret that your comments have been misunderstood – even I was taken aback by them at the time – hope that with this elaboration on where you were coming from, people’s focus will turn from you to the fact that there is a long way to go in providing high-quality services.

    I am humbled by your bravery, your tenacity, and your devotion to the betterment of this community!

    1. The film clearly intended to show the individvuals with autism were a huge burden and you and other families said things that intentionally or not devalued their human worth. This hurt people, and I am not over this hurt. Five people killed their autistic children in the 6 months following your film release, more than I can recall before or since. Another AS board member spoke that same year in a piece in Town and County about maybe it wouldn’t be such a bad thing if his kid drowned. I’m glad you have had a change of heart, but you cannot distance yourself from the damage this has done in further “othering” those with autism.

  6. 15 years ago when my soldest son was diagnosed with PDD-NOS no school in the city would help him.Most nursery schools would not take him and he had been abused/ignored at numerous other nursery schools so we removed him. In fact we had been lied to and bullied into taking him out of a public school kindergarten on the upper east side of Manhattan. What we did do is move to a suburb in order to get our son the help he needed. At no time even in my greated desperation did I ever think to drive off a bridge. I am glad that you found a school for your daughter and that Autism Science Foundation was founded. But don’t try to excuse what you said. You said it and meant it.

  7. I would like to remind Marc Rosen and Emily that correlation does not equal causation. The fact that autistic children were killed sometime after the release of the film “Autism Every Day” in no way implicates the film or Alison Singer. It is cruel and irresponsible to suggest otherwise. Simply because murders of autistic children following the movie seemed more than Emily “can recall before or since” doesn’t mean the incidence of such crimes actually changed, nor does it mean that any of the people involved in such crimes ever saw the movie.

    The movie “Autism Every Day” is frank and harsh, and I understand the backlash against it. But Alison Singer’s “George Washington Bridge” comment has been twisted beyond recognition. In the movie, Alison Singer expresses her grief, guilt, and horror at the kind of miserable setting in which the state was attempting to place her child for school. She was not upset because her child was being asked to leave a nice kindergarten on the upper east side of Manhattan, she was talking about an inappropriately restrictive environment where she knew her child would suffer. If Alison Singer hated her autistic child for being some kind of “other” without worth, she would not have cared one whit about her child being placed in a nightmarish program.

    Alison Singer has been paying the price for some time for expressing her darkest thought during her darkest hour. As a neurodiveristy supporter, I try to put my money where my mouth is. Not everybody thinks the way I do, not everybody has the same feelings I do, and not everybody expresses herself the way I do. If Alison Singer feels something you don’t feel or says something you wouldn’t say, so what? And may I remind the Thought Police here that Alison Singer did not, in fact, drive off the George Washington Bridge. Her autistic daughter is happy and well.

  8. I never meant to seem like the thought police. She can think whatever she wants, but statements like those do not belong in public service announcements for any reason, whether you mean it in the way it comes out or not. There is a time and a place for such things to be said, and it’s called therapy. She could have said she was frustrated and desperate. She could have expressed it in so many other ways, but she chose THOSE words. Louise, no matter how much she regrets her actions, the damage has been done, and it may have set back equality for autistic people by a couple of decades, if not longer.

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