Autistic Success

My brief submitted to The Senate Standing Committee on Social Affairs, Science, and Technology
The Honourable M. J.L Kirby, Chair
June 16th, 2005


I regret that I was unable, due to health issues, to attend the hearings in Charlottetown as I had planned to present this in person. Please accept my attached brief instead. I think it adds much needed balance to what has been heard so far on the subject of autism in these hearings.
Thank you very much,
janet norman-bain


Dear Ms. Norman-Bain,

On behalf of the Committee, I thank you for your submission. It will be distributed to all the members and your views will be taken into consideration.

Thank you for your interest in this important matter.

Sincerely,

Josée Thérien
Committee Clerk / Greffière de Comité
Standing Senate Committee on Social Affairs, Science and Technology /



My name is janet norman-bain and I am a 45 year old woman from Oyster Bed Bridge. I'm a "come from away" who, in 1979, met and married an Islander and I've been here, happily ever after, since. We have four kids, three boys and a girl, in that order, aged 12-19.

I'm here, not because I want to be or even feel up to being here but, because you insist on including autism in your examinations of "issues concerning mental health and mental illness" and in the process have given a platform to much misleading information along with many negative and intolerant views of autism.

I have been diagnosed with multiple sclerosis, a seizure disorder, depression and Asperger syndrome. Our 17 year old son Alex is autistic, our 15 year old son Ben, like me, is an Aspie. The rest of the family is more or less neurotypical.

I am speaking as someone with an Autistic Spectrum Diagnosis and as the parent of 2 children with Autism Spectrum Diagnoses.

Your committee was first addressed by David Vardy, the parent of an adult with ASD, who told you

"I appreciate this opportunity to speak on behalf of Canadian people with autism."

and then went on to say

"Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you for a lifetime."

Mr. Vardy does not speak for me. He does not speak for my autistic children. He does not speak for my autistic friends.

You have since heard from another parent and representative of FEAT Ontario who wants you to believe "you are hearing the voice of these children today"

and that our experience and that of our families is a "horror", akin to the "treatment of Japanese Canadians during World War II". She, and her colleague from FEAT BC want to persuade you that there is one medically necessary treatment for autism and without it our lives are "wasted and destroyed".

She clearly stated that with this very expensive treatment, 47% of autistic kids who get it before they start school go on to be indistinguishable from their peers. "The rest go on to improve remarkably". I challenge you to fully check out the statistics you have been given and the studies they have been based on and not blindly accept the 47% ABA recovery rate, the promised 90% institutionalization rate of autistics who don't get ABA, etc.

She also gave the case of her autistic son, non-verbal at 4 and now at 9 he is "improving", can speak, read, write, has some friends etc. Obviously he did not make the 47%. In fact "He still suffers from symptoms of autism which need to be managed by a medical professional, not by an educator." The cost—she gave up everything—her health, her husband, and at times her country. She'll never own a home or a decent car and may never hold down a decent job. He wants to go to school but can't because the school won't let the ABA/IBI therapist in and the Teachers Aides or Educational Aides or whatever they are called where she is are obviously not good enough for her. When you asked her if inclusion was working for autistic children she replied "absolutely not".

You have heard parents tell you how wrong the Supreme Court of Canada's decision was in the Auton case. There was only one autistic voice heard in all of Auton and it was that of the Intervener Michelle Dawson, who opposed both sides. Many, many Autistics and parents, friends, siblings, teachers, professionals—across Canada and around the world—stood behind Ms. Dawson and celebrated the Auton decision. The press and ABA pressure groups would have you believe that all parents were devastated by the Auton decison. Don't believe it. Like many parents, I celebrated with my family. We went all out, with a turtle cheesecake from the Made from Scratch Bakery.

You see, there is another side. There are autistics like me, parents like my husband and I, children like ours. We do not view our lives as "horrors", our autism or each other's as "worse than cancer". I do not consider Alex's life "wasted or destroyed" because I chose not to use behavioural interventions to "treat" his autism in an attempt to make him "indistinguishable from his peers".

At 4 years old Alex didn't talk either. Assessments around that time report little to no eye contact, frequent significant temper tantrums, no expressive speech, language, communicative intent or "appropriate social interaction". When Alex was diagnosed we did not view him as a collection of deficits. We accepted that we had a very different child with a very different road ahead than that of his siblings and peers. We assumed competence. We recognized and worked with his strengths.

He started talking when he was 6, mid-way through grade 1. A classmate taught him to talk. But just before he turned 4, using Augmentative Communication, Alex began to type. Ten years ago this June 27th, the day Alex will attend his high school graduation ceremony, where he will be graduating with honours, is the first time Senator Callbeck, then Premier Callbeck and my MLA, replied to my first letter to her requesting help in getting appropriate services for Alex. Because his primary method of communication, as well as doing school work, was typing, was there a way government could pay for a notebook computer for Alex? He had out-typed the usefulness of his Canon Communicator and I viewed a laptop as both "appropriate" and "necessary". The government however didn't feel it was necessary enough to pay for, nor did governments since. So his first three laptops, lasting about three to four years each, were purchased with the generous help of a number of service organizations, both locally and as far away as Moncton, NB. His most recent laptop was purchased through the PEI Disability Support Program about 18 months ago, but only after they turned down his request, and we appealed the decision and won, setting a precedent that will help many disabled Islanders who need computers to communicate or accommodate other needs. In 1995 when I was asking for $2000. or so for that laptop, the only thing Alex really needed, I was told he couldn't have it. But we could have inappropriate services—in our case 7 days/year in the care by parent unit in Halifax, plus expenses, approximately $12,000/year to get assessments by psychologists, SLPs etc. Even though I consistently turned down the care by parent unit in a bid to get what he really needed, I was still forced to find my own funding for his first three notebooks; and even though every professional involved with Alex backed his request to the DSP for a notebook, I was forced to fight for it.

As far back as 1994 our doctor put in writing that "Mrs. Bain epitomizes everything that we are trying to accomplish in health reform, i.e., taking ownership of the problem, with less reliance on "The System", maximizing family support and minimizing institutional care....She has consistently made minimal and judicious use of the formal health care system."

I believe in choices. I will not tell you that there is one treatment for autism or even that autistics need treatment. We need education, and surely we need assistance, but there is nothing "all autistics need". Alex is proof that inclusion absolutely can and does work. Alex has been fully integrated, with a TA in most but not all classes, doing the regular curriculum, since grade 1. His average in high school, taking a mix of academic, general and open courses, is in the high 80's. He is graduating, with the peers he began school in grade one with when he was "the kid who can't talk", and he is on the honour roll. He's been on the Cross Country and Track and Field Teams all three years and I don't think he missed a single school dance, right up to and including the prom.

Almost every weekend, for most of the year, Alex puts on this t-shirt, heads to a road race on the Island and runs for autism.

Shirt Front Shirt Back

Shirt Front

Shirt Back

As his shirt says, he runs for autism, not against autism. Not to raise money to find a way to cure himself or his brother or his mom or prevent people like us from ever being born, but just to raise awareness and acceptance. He's doing it. This photo album was one of his prizes for raising over $550 in the Canadian Breast Cancer Foundation Run for the Cure. He crossed the finish line 9th out of the hundreds of runners in Charlottetown.

Last fall he placed 27th in the PEI half marathon out of over 400 runners. Last week at the High School Athletic Banquet he picked up the Award of Distinction for talent on the Cross Country Team.

Award of Distinction

This Spring at the PEI Roadrunners Annual General Meeting and Awards he picked up this one for Rookie of the Year and another for Top Junior.

Rookie of the Year Award Top Jr.

Do you still applaud the view that half my family would be better off with cancer? Does my life, even with my other medical issues thrown in, really appear to be such a horror to you? Alex's life wasted and destroyed? No. We have a good life. Alex is a happy, well- adjusted kid ready to graduate with his peers—including that little girl who taught him how to talk in grade one—and join the workforce in the fall. The choices we made mean, along with all Alex's continuing improvements over the years, "far exceeding" expert's expectations, that we own our own home, the mortgage is paid off, I drive a decent car, I have a husband who drives an old truck—even though I haven't been employed, though at times I've been self employed, since I was 20. The sensationalist language being used to describe autism is getting worse and spreading. Including autism in this committee, giving a platform to parents who say the Auton decision was horrible and who want to give a voice to their cause and call it mine and/or my children's is not helping. Autism is a developmental disability, not a mental illness.

In Alex's words:

"Autism the boy is Alex Bain.
Autism is happy and sad.
I like Autism.
Autism makes me different from my friends.
That's OK."

In our world, autism makes us different. Not defective, not in need of "medically necessary treatment", not in need of being made "indistinguishable from our peers". Not mentally ill. Yes, autistics and parents/caregivers need appropriate services, support and help, but those services must be as unique as each of us. We need choices. In our world, acceptance and accommodations go a very long way.

You, as a government, need to seek out the autistic population and find out directly what services are "necessary" and "appropriate", in general and specifically. Stop relying exclusively on the non-autistic population who claim to "speak on behalf of Canadian people with autism" and tell you when they speak that "you are hearing the voice of these children today". As I stated, I am speaking as someone with an Autistic Spectrum Diagnosis and as the parent of two children with Autism Spectrum Diagnoses. I would not pretend or presume to speak for anyone else, though rest assured, there are many out there like me.

janet norman-bain
jypsy@isn.net

Submitted June 28th, 2005

Alex

An added note.

Last night, June 27th, Alex graduated from Bluefield High School. Not only did he graduate with honours, but he won prizes for having the highest marks in two of his courses and won an Application prize in another.

Alex is very much autistic but he is not at all the horror story that many "autism advocates" would have you believe he should be, not having received "medically necessary treatment". He's happy, he's healthy, he's been successful in his education, his work experience and his sporting endeavors. He's well known, well liked and has a few friends.

Given the obstacles and challenges he faced, accommodated, tackled and/or conquered to get to that podium last night, I predict he has a very bright future ahead, as long as he continues to get the necessary services and supports he needs to make him the best autistic he can be.

Alex & Friends at Prom

~ Alex & friends at the Prom ~

blogger statistics