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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.

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Autism and preschool: Include me!

I saw red flags for autism when my son was three and struggling with behavioral and social issues in preschool, so I made an appointment for him to be assessed by a developmental pediatrician. The wait was long, so in the meantime I arranged for an early education special education teacher to observe my son in his preschool classroom and come up with a plan to help his teachers understand his abilities and better manage his behaviors. None of this mattered, though. Days after the teachers were informed that my son had indeed received a formal diagnosis of autism, the school called to tell me my son was being expelled from preschool. It was a devastating experience.

A new guide called  Modifying the Preschool Classroom To Include Children with Autism: A Manual for General Education Preschool Teachers by Karen Griffin Roberts was created to help preschool teachers understand that it’s possible to include children with autism spectrum disorder in their classes. I talked with Ms. Roberts, a preschool teacher and mother of a son with Asperger’s Syndrome, about her guide.

Louise Bach Capps: You’ve put together a guide called Modifying the Preschool Classroom to Include Children with Autism: A Manual for General Education Preschool Teachers. As a long-time preschool teacher and a mother of a child with autism, you are uniquely qualified to write this manual. When did you first see the need for such a guide?

Karen Griffin Roberts: My son was diagnosed with ASD ten years ago, around the time Asperger’s Syndrome was first added to the DSM as part of the autism spectrum. Practically up until that time I shared the general public’s understanding that autism was only what you see in the movie Rain Man. I was determined to learn all that I could about autism to educate myself on the differences across the autism spectrum.

As my son got older and less dependent on me, I decided to go back to school for my education degree. That year, I was privileged to include a child with Asperger’s Syndrome into my general education preschool classroom. Since our family had already been introduced to ASDs, I had a bit of a “head start” as an educator. But many of my fellow teachers were concerned that I was setting a precedent they would not be able to follow. These teachers were running very individualized, developmentally-appropriate classrooms, but they were still afraid. I decided to write the manual so that teachers like my co-workers could better understand the range of abilities of those with autism spectrum disorder.

LBC: So the manual was a school project?

KGR: I am in the Masters of Early Childhood Special Education program now, but I wrote the manual while I was doing a Bachelors of Individualized Study called Early Childhood Development: A Study in Autism. For my thesis I chose to do a “creative project,” which resulted in the manual. While working on my BIS, I did a summer internship with the Kennedy Krieger Institute of Autism Studies in Baltimore, and was able to observe autism classrooms and attend professional development seminars on teaching young children with autism. I was aware that exemplary preschool programs do teach for the child, but I hoped if I put a manual together with a bit of guidance regarding the different learning styles of children with ASDs that it would help alleviate some of the anxiety the teachers were feeling, and possibly lead to more inclusionary experiences. In these past two years some of my co-workers have included children with autism in their classrooms very successfully, and are confident and happy to continue the trend.

LBC: IDEA doesn’t apply to private schools, and the majority of preschools are run by churches or are otherwise privately run. Why should a private preschool strive to include kids with ASD?

KGR: They don’t have to follow IDEA, but they should include all children. Inclusion is “best practice” in early childhood education, and any school promoting “quality education” should follow best practices. Preschool has become what kindergarten used to be. It should be a child’s first positive school experience. I believe my biggest responsibility as a preschool teacher is to prepare each child in my class for the social world. Unfortunately, there is no other time in a child’s school years when so much emphasis is given to the social world. So we need to help children develop that way of thinking before they move forward. Preschools should include kids with ASD because children need to understand that we are all different as much as we are the same, and that every person has something valuable to add to the classroom. Simply put, inclusion works, and it’s the right thing to do.

LBC: It’s not unusual for ASD kids to be kicked out of general education preschools, is it?

KGR: Most unfortunately, it is not at all uncommon. I feel strongly that this is a big hole in early education. Preschool teachers focus on social skills and a positive first school experience for each individual child. Since children with autism often present with deficits in social reciprocity, a preschool program is a very natural environment to learn those skills along with typically developing peers. When children are expelled from preschool, it’s nearly always for behavioral reasons. It’s hard for me not to jump right up on my soap box here! Children are born with different temperaments, and each individual person has an innate emotional makeup. One of the biggest lessons I believe young children need to learn is that it is OK to be angry, upset, to cry. I try to help them learn that it’s what we do with those feelings, how we handle them, that makes a difference. This is a difficult lesson for every child to learn, and it is especially difficult for children with autism. Many children with autism do not have the social skills to adapt naturally to different situations. They need to be taught, and the behaviors need to be modeled and reinforced constantly. That is not to say that children with autism should be singled out for these lessons. The entire classroom benefits from such direct instruction.

LBC: What about a preschool teacher who says, “It’s not fair to the other kids if I give so much of my time to the child with ASD?” I have heard this from one preschool and one museum-based summer program in regard to my own son.

KGR: I get frustrated when I think about this. Why do some educators not get it? Fair is not equal. In the manual, I write about the three rules I use in my classroom, the first rule being “Take care of yourself and your friends (we’re all your friends).” I spend the first month of the school year helping the children learn how important that rule is, and talking about friendships, families, and difference in people. These are the issues that help children nurture social and emotional competency, and develop a sense of belonging. Children are very accepting, I think it’s the adults who have anxiety in this area.

LBC: Some undiagnosed ASD kids, little twos and threes, are in general education preschools. If a preschool teacher has concerns about a student’s development, how should she address this to the parents?

KGR: This is always difficult. Before families enroll in a preschool, they should be sure the teachers have some sort of developmental progress assessment program. A good program will begin informal assessments–observations, some notes–as soon as the school year begins, to create a baseline for particular abilities. The National Association for the Education of Young Children provides a list of developmental milestones children should meet at a particular age. I trust the family’s knowledge of their child much more than my own, so I first discuss any observations with them. If it’s something we both agree merits further observation, we continue to observe, and if we don’t see improvement, I ask them if they would like to contact Child Find for an assessment. While this is very difficult for some families, for others it is a relief.

LBC: I’ve read your manual online, but do you have plans for it to be published? I’d love to see it in a booklet that could be distributed to preschools everywhere.

KGR: I sent it out to publishers and had an offer to revise and expand it into a college textbook. But I’m afraid those changes would be inappropriate for the audience for whom I wrote the manual. Honestly, while I understood the demand here locally when I wrote it originally, I did not expect the reactions I’ve gotten from school districts, families, and teachers. I’m a bit overwhelmed!

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