Autism Talk TV Ep. 3: Allison Singer at IMFAR

Post Reply New Topic

I am sorry but if Ms. Singer is going to regain credibility with me, then I want her to create a YouTube video or go on national TV with her autistic daughter within listening distance, and apologize for talking about her suicide attempt. I know that it was a cry for help BUT to say it on a national or global ad and in front of the daughter thinking that the daughter does not understand is totally wrong.

What is worse is that in many cases where a person with severe autism has found a way to speak, it comes out that the person had heard and understood all the hurtful words that were said and the other family members had to backtrack and apologize once that came out. I am sure that her daughter understood what her mother said, even if the daughter cannot communicate it back.

So, anything that comes from Ms. Singer is suspect information as far as I am concerned. Even if she is not with Autism Speaks anymore, the damage has been done and until she is willing to atone for her actions, I would not trust her at all.

Hi all:

I appreciate that so many of you watched the video Alex produced and I wanted to respond to the comments posted about the Autism Every Day movie. If Alex had asked me about the Autism Every Day video I would have been happy to have responded on camera. I have tried to talk about it more since I left Autism Speaks and to clarify and explain some of the statements I made.

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 thinking and behavior in response to some of the very good points people have made. For example, given my daughter's significant cognitive impairments I doubt she could understand what I was saying when we made the film, but, given even the small chance that she did or could have, I am sorry I made the statement I did in front of her and certainly would not take that chance again.

I remain a strong believe in ther importance of genetics research, as I think it 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 some members of the neurodiversity community, although I do think that we have tried to be friends and continue to talk about this issue. The purpose of genetics research is not eugenics; rather the goal is to understand the molecular basis of autism so that we can intervene to improve learning, behavior and communication. 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, or even tell me how she feels. She still has a long way to go in overcoming significant cognitive, language and behavioral challenges. But I look at the type of work that Dr. Mark Baer is doing at MIT and that Dr. Joe Buxbaum is doing at Mt. Sinai and am really hopeful that Jodie and other kids like her who struggle to communicate will someday be able to benefit from the treatment options that will grow out of their research.

Thanks for taking the time to read this and my thanks to Alex for inviting me to participate in his video. --Alison Singer

While I am unsure about the organisation in which she associates herself with now, from looking at the site and hearing what she has to say, it sounds brilliant (particularly compared with Autism Speaks). I mean, sure, you can bring in the whole stuff about "opening pandora's box" when they suggest something about preventing autism (or at least making it less severe) I feel that she has redeemed herself and in my eyes, she comes across as someone who is more interested in the truth and science than a sensationalist. However, maybe she was always like this and Autism Speaks was heavily editing and exxagerating stuff she was saying.. I mean, I don't think I would ever condone the whole stuff about her contemplating a murder suicide, but apparently she was quite ashamed of saying that.

As a parent of a child with classic autism while also an "aspie" much less affected than my son I think that I want to say that there is too much fighting between the groups dominated by parents and self advocating autistics.

I think that it is very important to have dialog and honest attempts to listen to each other. It can be extremely frustrating for parents trying to help their children and they get finely honed instincts fighting with school districts, county offices, and sometimes the general public trying to help their children. They often view the neurodiversity crowd as trying to rob their children of what they need.

Accusations of secretly hating their kids or just being ashamed does not bring dialog.

On a seperate note I do find it a little ironic that Alex interviewed Alison Singer (sorry if I misspelled) here but when GRASP was working with her WP had a front page essay about GRASP selling out.

Times change I guess.

Please forgive typos. I posted from my blackberry.

"Something is rotten in the state of Denmark": the fish is rotting from the head down—all is not well at the top of the political hierarchy.

Denmark is "an unweeded garden" of "things rank and gross in nature" (Act 1, scene 2).

I have no respect for Autism Speaks or anyone who promotes their agendas.