Address to Convocation by
Dr. Barbara Hopkins
A honorary degree is the greatest honour that a university can bestow. The award made today is in recognition of volunteerism and I am but a representative of a large number of individuals who volunteer. I am immensely pleased by this honour and very proud to accept it. My thanks to the Senate and to my colleagues in the Autism Society of Newfoundland and Labrador who nominated me.
Today is an important milestone in the lives of you who are receiving your bachelor of science and master of science degrees. Congratulations to you all.
When my family and friends learned that I would be receiving a honorary degree, I was given advice as to what I should say at convocation. My brother-in law advised me to make several clear memorable points so that you really could become informed by my address. That idea really terrified me! Joseph R. Smallwood addressed my convocation some 52 years ago this month and I don’t know if I remembered the next day what he said. Note taking is not customary at convocation.
My eldest daughter who works in lung physiology research at University of California, San Diego said, “Mom, tell them that they don’t have to know, what they want to do, now that they have graduated.” She knew that many of you will be asked today “what are you going to do now you have your degree,” and many of you will not be able to answer that question. She knows from experience that people change, opportunities arise and lives develop. What you do now may be completely different from what you do 10 years from now.
I was also given advice from some of my bridge friends who said, “Barbara, you must talk about volunteerism.” So today, I will attempt to take all their advice: not to be boring, relieve some of your anxieties, encourage you to become volunteers and increase your knowledge of autism, my particular area of volunteerism.
Initially, I had expected that I might be talking to education graduates. I spent most of my professional life as a teacher. However, it is very appropriate, that I am talking to B.Sc. and M.Sc. graduates, as you are the ones who will solve the puzzle of autism. It has taken a long time for scientists to be interested in this field but finally due to a great deal of advocacy, substantial funding for research in autism has been granted in Canada, under the Autism Genome project, and in the United States under The Combating Autism Act.
In the past 20 years, autism or autism spectrum disorder or ASD as it is now called, has increased in alarming proportions. The Janeway, which started tracking those with the diagnosis in 1999, stated recently that in Newfoundland one in every 135 children has a diagnosis on the spectrum. The Government of Canada on its Health Canada website gives similar prevalence rates. Twenty years ago, the prevalence of autism was four to five children in 10,000. You will note that I used the word children in these statistics, as it was originally thought to be a disorder of childhood. Children with autism grow up to be adults with autism and have normal life spans. A study published recently in the Archives of Pediatric and Adolescent Medicine estimates each child diagnosed with autism will accrue about 3.2 million dollars in medical and non-medical costs over their lifetime. The most expensive components are lost productivity and adult care.
What is autism spectrum disorder? It is characterized by deficits in communication and socialization, accompanied by restrictive and repetitive patterns of behaviour. It is called a spectrum disorder as there is a great variance in the severity of the disorder but all so diagnosed have the core problems in communication, socialization and behaviour.
Autism, first described in the 1940s, was thought to be a psychiatric disorder. This concept persisted for about 20 years, when in the 1960s, it was deemed to be a developmental, neurological disorder. Most physicians, both here and elsewhere, told parents that this was not a disorder where they could help. Needless to say, parents were bereft: a diagnosis and no help.
However, at that time, Ivor Lovaas at UCLA was starting to work with persons affected by autism using Applied Behavioural Analysis and in North Carolina, Eric Schoppler started the Treatment and Education of Autistic and other related Communication Disordered Children or TEACCH, a statewide program for persons with autism.
Parent support groups started with the founding of Autism Society America in 1966, Autism Society Canada in 1973 and the Autism Society of Newfoundland and Labrador (ASNL) in 1984. Our society not only supported families affected by ASD, but we also started programs: summer and recreational ones. We worked as well with government on appropriate school and preschool programs. We had no funding except what we raised ourselves.
In 1999, after many years of meetings, the Government of Newfoundland and Labrador recognized the severity of the disorder and started a province wide early intervention program based on the principles outlined by Lovaas: the first such program in Atlantic Canada. Research had shown that all children improved somewhat with early intervention and that 45 per cent of the children could go to school and achieve at nearly the same rate as their typically developing peers. This is an expensive program, as it demands at least 30 hours a week of one on one instruction over several years. It is cost effective, however, if 45 per cent need fewer services as adults and can become productive members of society. At the same time, the Department of Education created a category under which students with ASD could obtain school services and appointed three consultants to assist schools with their programming. Forty thousand dollars was also earmarked for ASNL to pay for our first executive director.
That helped the children under six, and those of school age, now we needed to help those who had not availed of such services, the adolescents and adults. In November 2005, the Elaine Dobbin Centre for Autism opened on Shamrock Farm, just across the street from the Janeway. This centre provides day programs for persons with ASD throughout their life span as well as serving as a resource, training and research center. It was built with the generous support of the St. John’s Rotary Club, Memorial University, the Pippy Park Commission, Craig and Elaine Dobbin, the Government of Canada, the Government of Newfoundland and Labrador, and many other donors. When it opened, Memorial’s President, Axel Meisen, expressed his desire that researchers at Memorial work with ASNL to further our knowledge of autism. That is starting to happen.
Why am I telling you all this? When a small group of volunteers work together for the common good, good things can happen! Volunteers do make a difference!
Why did I get involved? I will never forget the first child I saw with a diagnosis of autism. I was working in the Diagnostic and Remedial Unit at Memorial and was asked to see a four-year-old boy with autism by the YWCA Preschool. They did not know what to do with him: he was disrupting their program.
I heard Jonathan before I saw him: running and shouting something unintelligible, then stopping to read the signs in the corridor of the Hickman Building. He ran past me as he entered our corridor, and went into one of our teaching rooms. He had been to the D&R Unit once before and knew where to go. When I finally understood his words, he was saying “Sony tape.” That did not help me very much.
Jonathan was quite typical of many children with autism. Although he was only four, he could read any word he saw, yet could not carry on a conversation or answer a simple question like “how old are you?” or “what is your name?” He did not look at you; he did not play with toys but lined them up and was obsessed with words, numbers and letters. He became very upset and tantrumed when his routines were changed. He was obviously an intelligent lad but would not easily fit into a school system that had no special education category for a child with autism, no programs, and no teacher aides. In the late 1970s children with autism either did not attend school or went to specialized classes or schools for children with mental disabilities. For me as an educator, Jonathan was a child who needed appropriate schooling: for his parents, the diagnosis was the death of a dream.
Helping others like Jonathan and his parents find resources has given so much back to me including this honour. It was not planning or goal setting that led me here today but a desire to help. Opportunities like this will come along in your lives. What you do with them depends on you!
In closing, I am reading a poem written by a non- verbal autistic adult, David Eastman, who used a computer to communicate. Here is what David wrote.
You forget hope.
It is easy
But only hope will set you free.
You have to hope for the best,
Prepare for the worst
And perhaps pace yourself
To accept either one.
There is not much hope
For autism right now.
When they find a cure
I will perhaps be old.
Youth really paves the way
For old age
And the pavement will be set.
How terrible old age will be
On the parents
Of the children.
Do you think help
Will arrive in time?
For the author, David Eastman, help didn’t arrive in time as drowned in his earliest 20s. Perhaps one of you will be part of a team that helps to solve the puzzle of autism and hope will arrive for all persons affected by autism.
Thank you for your attention.