Well Being

My Testimony on the New Jersey Autism Bills

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At 10am this morning in the Senate House Annex in Trenton, New Jersey, a hearing was held concerning the package of autism bills proposed by lawmakers who are “[s]tunned by a recent federal study that found New Jersey with the nation's highest autism rate,” as noted in today's Courier News Online. I had planned to attend this hearing and prepared a written statement.

Yesterday, Charlie developed a cough and sniffles, and had periods of being very sad. He was in good spirits to see his ABA therapist on Friday afternoon, but did not do well on his reading program; on Saturday, he did not swim with his usual gusto. On Friday, four of Charlie's classmates had not been in school due to illness: Jim and I suspected that it was Charlie's turn to come down with a cold. He went to bed on Sunday coughing and woke up with a fever at 3am this morning and did not fall back asleep until 8.30am.

I cannot say how much I regret not being able to attend the Hearing about the autism bills. I am an autism advocate but, first of all, I am a mother and today where I need to be is home with a sick boy.

Here is my testimony.

March 5, 2007

Members of the Committee,

My name is Kristina Chew and I am the mother of a 9 1/2 year old autistic son and an Assistant Professor of Classics at Saint Peter's College. I also write a weblog, Autism Vox, that focuses on issues of autism advocacy, the education of autistic students, and autistic adults. As a parent of an autistic child, I would like to thank the Committee for taking the lead in putting together an innovative package of legislation that seeks to improve the lives of autistic persons in New Jersey.

As a parent, I was particularly pleased to learn about A-4055 and A-4058, which establish that  candidates for teaching certificates and current teachers, and also emergency personnel, be trained in autism awareness.  As you know, the prevalence rate of autism in New Jersey—1 in 94—-is higher than it has ever been (and is indeed the highest in the nation); accordingly, there are many more autistic students in New Jersey schools. It is therefore of paramount concern that all teachers in New Jersey understand what autism is and also understand the specific needs and strengths of autistic students. One of my son Charlie's former home ABA therapists is now an elementary school teacher in northern New Jersey; she has often told me that her experience teaching Charlie and learning the techniques of ABA have proved invaluable to her classroom teaching, as she has taught autistic students who are mainstreamed in her classrooms and also attended IEP meetings for her students. 

This kind of understanding and awareness about autism is equally crucial for emergency personnel including emergency medical technicians, police officers, and firefighters, as sadly illustrated by the tragic death of Kevin Colindres. Kevin Colindres was an 18-year-old man with autism who lived in Miami. On December 12, 2006, police responded to calls from Colindres' family that he was having an “altercation” with family members; Colindres was restrained by the officers. Colindres stopped breathing and went into a coma. He died on January 5th in the hospital. The tragic experience of Kevin Colindres and of his family is one that we strongly hope will not occur again, and an autism awareness program in which emergency personnel learn about autism, some of the communication difficulties of autistic persons, and much more is more than necessary.

As a parent of an autistic child who will soon be ten years old—and, very soon, an adolescent and then an adult—-I was very heartened to learn about bill A-4057, which establishes an Adults with Autism Task Force for New Jersey. A friend's autistic son recently turned 21 years old; my friend was at a loss as to what kind of programs and other services would be available  that would be on a par with the excellent autism education his son had received at one of New Jersey's private autism schools. My son Charlie briefly attended an after-school program at a center in Union County that shared space with a day program for developmentally disabled adults. When I went to pick up my son, the adults were usually sitting at tables or in front of a video in a the large warehouse-like space. For the most part, they were not being engaged by the staff; the atmosphere was quiet and grim. It was not a program that I would ever wish to send my son to and I strongly hope that an Adults with Autism Task Force can propose and advocate for improvements in programs and services for adults in New Jersey.

To this end, I would like to explain my reservations regarding bill A-4057. First, the proposed Task Force does not include any adults with autism. This is a serious omission. As a parent, I have learned much about “autism from the inside out” from my communications with autistic persons via my website and also from their own writings. As an educator of college students here in New Jersey and in the Midwest, I have taught several students who have been on the autism spectrum. Many of these students have been able to explain to me how they are best able to learn in a classroom environment; they have also shared stories of doctors telling their parents that they might never talk, much less attend college, and of their earlier experiences in special education. To understand what it is like to have autism, it is imperative that we listen to the voices of autistic adults.

For this reason, I also have some questions regarding Autism Speaks, one of the organizations that is included on the Task Force. Like many parents, I am more than impressed and appreciative of this organization's ability to promote autism awareness. One of the goals of Autism Speaks is to fund “global biomedical research into the causes, prevention, treatments, and cure for autism.” My own position is that, rather than devoting efforts to discovering some cause of autism, I prefer to focus on what we can do for autistic persons—for my son Charlie here, today, and now. In my son’s case, this means his education and also services and programs that can best help him flourish and develop his strengths. Witnessing Charlie learning and growing far eclipses any wish in me that he be “cured” from autism. Finally, I have some reservations about Autism Speaks' representation of raising an autistic child as a life of hopelessness and despair, of dreams lost. My life with my son Charlie is not easy but has been a journey of unexpected joy and learning, and much love.

As a parent with such concerns, I encourage that A-4057 be tabled for the moment and the two issues that I have mentioned be considered in order to make sure that the legislation can best serve the interests of persons with autism in New Jersey, including my son and many other adults with autism. And as a parent, and as an educator who looks forward to seeing more autistic students in her classroom, I wish to express again my gratefulness to the Committee for its attention to issues concerning with autism. Thank you.

Kristina Chew, Ph.D.