From Whence We Came
by Robert Hart
Thornbury, Ontario
“Autism is a form of Childhood Schizophrenia”
“Autism is caused by the ‘refrigerator mother’ who rejects the baby”
“The incidence of Autism is one in 5000”
“You should put your child in an institution, and have another child because autism does not repeat in families”
Such was the information or should I say misinformation which was given to parents who had a child with an Autism Spectrum Disorder in the 1960s. In fact back then we were parents of an autistic child. ASD was not coined until many years later. When parents told friends that their child was autistic they were congratulated on having an “artistic” child. That mistake was common, but understandable as there were so few autistic children in Toronto in the sixties. Many leading pediatricians at the Hospital for Sick Children had never seen one as a patient. It was therefore difficult to obtain a diagnosis and once one was obtained the literature of the day placed blame upon the mother, notwithstanding that the babies’ siblings were not affected.
Parents of children with an ASD were on the outside of the social services circle. We would knock on many doors, but few, if any, were opened. Autism was a mysterious disorder. Its cause was unknown and the numbers minute. Our children’s behaviour and requirements were different. We were not welcomed into the Association for the Mentally Retarded (now Community Living). No one was willing to go out on a limb to provide treatment programs for our children, especially since there were waiting lists of children who fell within their areas of expertise.
So how did Autism Ontario come into being? This is a relevant question because the lessons of the past have determined the present and laid the groundwork for addressing the challenges of the future.
This article will concentrate on the few years before the incorporation of the Ontario Society for Autistic Children and the first 10 years following that critical event. It will described how Kerry’s Place Autism Services was the off-spring of OSAC and how the two worked in tandem to achieve the goals of the founders of OASC.
Corrine and Jules Gross had a son who was receiving treatment in the United States and wanted to bring their son back to Canada, but no program was available. They approached the Toronto STAR to do a human interest story about this family which was reaching out to find other families with an autistic child. In the result about 10 families met at the Gross’ home and agreed to form the Toronto Society for Autistic Children.
Shortly after Dr. Chris Webster set up a research program at the Clarke Institute of Psychiatry and many of our children were accepted into that program. From the nucleus of the folks who had met at the Gross’ home and through the Clarke Institute, together with a small number of families from Ottawa who had learned of the Toronto Society, the idea of forming the Ontario Society for Autistic Children was born. We were determined to find a better solution than surrendering our children to Provincial institutions and to establish our own activities and programs.
We initially planned to keep the younger children at home and to set up treatment centres for the adolescents. But how to meet that goal? Among the challenges was the need to educate the public and the government to gain recognition of this “disability” along with the need for funding.
Two members suggested a telethon. The fledging CTV station in Toronto was receptive. Milton Berle who had his own TV variety in the United States was hired as the headliner. Simpsons donated its telephone lines. The telethon was a financial disaster, but succeeded in creating awareness. We were complete novices and were not aware that 2 months planning was insufficient!
We needed to become incorporated and to find a number of Honorary Patrons. The Lieutenant Governor, Pauline McGibbon, headed the list. We were ambitious and set up the Chapter system, initially with only Toronto and Ottawa. Within 10 years it had spread to other areas.
In Toronto all parents in the group pitched to run a swimming program and a Cub Scout troop. To raise money for operating expenses we held rummage sales annually, and for a period of time sold roses on street corners during April for Autism month. Each year we joined with the Civitan Club to sell Christmas cakes. Our garage was full of cakes as my wife mixed and matched cakes to orders. Every parent participated which contributed to the success of the early programs. OSAC set up summer camp programs which we continued to run until the Integra Foundation (now the Geneva Centre) began summer camps for autistic children.
In order to raise funds to purchase property for a rural treatment centre, Jules Gross arranged with the Koffler family to open their estate north of Toronto for a cocktail party. The Cubs formed an Honour Guard for the Lieutenant Governor who reviewed the troop. The event was a financial success as many people were interested in seeing Joker Hill. The event was repeated annually for another two years at different locations and we raised enough money to purchase land north of Tweed in Eastern Ontario. The intention was to serve both Toronto and Ottawa families.
We had land, but no government funding to set up the program. Bruce Gorrill met with officials in the Ministry of Health and received a commitment to fund a feasibility study. Val O Neil offered his farm at Clarksburg. We hired a psychologist from the Clarke Institute and some of his staff and the rest almost became history. The Ministry accepted the results, but refused to fund the Ontario Society for Autistic Children on the basis that it could not fund a parent group.
To overcome that obstacle we incorporated Kerry’s Place which had a different board of directors. The President of OSAC was an ex officio director. That relationship continued for a short period until the then President who was from Ottawa stopped coming to meetings. Eventually, since OSAC stopped participating, the Kerry’s Place By-Laws were amended to remove that provision.
Val agreed to mortgage his farm and build an addition to his home to house 11 individuals provided Kerry’s Place paid enough rent to cover the mortgage. The Ministry of Health accepted the budget presented. Construction began and we started interviewing for clients. The Ministry of Health after a few years ceased funding because we were unable to cure the clients within two years. Kerry’s Place then fell under the jurisdiction of the Ministry of Community and Social Services.
But we were still having difficulty in getting new funding from the Ministry as the bureaucrats were reluctant to advocate for funds for a new organization and gave preference to established groups which were receiving funds. No one wanted to be associated with a group which may prove to be an embarrassment.
We continued to raise our profile by having OSAC, Kerry’s Place and the Geneva Centre co-sponsor the first national conference on Autism.
What are some of the lessons that we learned?
In summary, notwithstanding that OSAC and Kerry’s Place drifted apart during this period, the dreams of the founding members were recognized by moving from no recognition and no services to a raised profile of Autism, the establishment of several chapters and at least 3 treatment centers across three regions in Ontario. There is not room to mention all the key players in a short article. Many important contributors have died. The current parents of sons and daughters with an ASD owe a great debt of gratitude to those mentioned and unmentioned above.
By the same token those who struggled with a $5,000.00 budget would be astounded by the almost $ 50,000,000 present day budget of Kerry’s Place and the high profile achieved by Autism Ontario. Each time I open the newest magazine my mind is blown away by the evolution of the organization which could not have been accomplished without the spirited leadership of Marg Spoelstra and the dedicated group of Chapter Presidents. But they need every members support to meet the current and future challenges.
The opening quotations were my introduction to Autism following my son’s diagnoses at the West End Crèche in Toronto. The reference to autism being a form of Childhood Schizophrenia is from the textbook I studied in Abnormal Psychology in 1959 six years before the birth of my son.
“Autism is caused by the ‘refrigerator mother’ who rejects the baby”
“The incidence of Autism is one in 5000”
“You should put your child in an institution, and have another child because autism does not repeat in families”
Such was the information or should I say misinformation which was given to parents who had a child with an Autism Spectrum Disorder in the 1960s. In fact back then we were parents of an autistic child. ASD was not coined until many years later. When parents told friends that their child was autistic they were congratulated on having an “artistic” child. That mistake was common, but understandable as there were so few autistic children in Toronto in the sixties. Many leading pediatricians at the Hospital for Sick Children had never seen one as a patient. It was therefore difficult to obtain a diagnosis and once one was obtained the literature of the day placed blame upon the mother, notwithstanding that the babies’ siblings were not affected.
Parents of children with an ASD were on the outside of the social services circle. We would knock on many doors, but few, if any, were opened. Autism was a mysterious disorder. Its cause was unknown and the numbers minute. Our children’s behaviour and requirements were different. We were not welcomed into the Association for the Mentally Retarded (now Community Living). No one was willing to go out on a limb to provide treatment programs for our children, especially since there were waiting lists of children who fell within their areas of expertise.
So how did Autism Ontario come into being? This is a relevant question because the lessons of the past have determined the present and laid the groundwork for addressing the challenges of the future.
This article will concentrate on the few years before the incorporation of the Ontario Society for Autistic Children and the first 10 years following that critical event. It will described how Kerry’s Place Autism Services was the off-spring of OSAC and how the two worked in tandem to achieve the goals of the founders of OASC.
Corrine and Jules Gross had a son who was receiving treatment in the United States and wanted to bring their son back to Canada, but no program was available. They approached the Toronto STAR to do a human interest story about this family which was reaching out to find other families with an autistic child. In the result about 10 families met at the Gross’ home and agreed to form the Toronto Society for Autistic Children.
Shortly after Dr. Chris Webster set up a research program at the Clarke Institute of Psychiatry and many of our children were accepted into that program. From the nucleus of the folks who had met at the Gross’ home and through the Clarke Institute, together with a small number of families from Ottawa who had learned of the Toronto Society, the idea of forming the Ontario Society for Autistic Children was born. We were determined to find a better solution than surrendering our children to Provincial institutions and to establish our own activities and programs.
We initially planned to keep the younger children at home and to set up treatment centres for the adolescents. But how to meet that goal? Among the challenges was the need to educate the public and the government to gain recognition of this “disability” along with the need for funding.
Two members suggested a telethon. The fledging CTV station in Toronto was receptive. Milton Berle who had his own TV variety in the United States was hired as the headliner. Simpsons donated its telephone lines. The telethon was a financial disaster, but succeeded in creating awareness. We were complete novices and were not aware that 2 months planning was insufficient!
We needed to become incorporated and to find a number of Honorary Patrons. The Lieutenant Governor, Pauline McGibbon, headed the list. We were ambitious and set up the Chapter system, initially with only Toronto and Ottawa. Within 10 years it had spread to other areas.
In Toronto all parents in the group pitched to run a swimming program and a Cub Scout troop. To raise money for operating expenses we held rummage sales annually, and for a period of time sold roses on street corners during April for Autism month. Each year we joined with the Civitan Club to sell Christmas cakes. Our garage was full of cakes as my wife mixed and matched cakes to orders. Every parent participated which contributed to the success of the early programs. OSAC set up summer camp programs which we continued to run until the Integra Foundation (now the Geneva Centre) began summer camps for autistic children.
In order to raise funds to purchase property for a rural treatment centre, Jules Gross arranged with the Koffler family to open their estate north of Toronto for a cocktail party. The Cubs formed an Honour Guard for the Lieutenant Governor who reviewed the troop. The event was a financial success as many people were interested in seeing Joker Hill. The event was repeated annually for another two years at different locations and we raised enough money to purchase land north of Tweed in Eastern Ontario. The intention was to serve both Toronto and Ottawa families.
We had land, but no government funding to set up the program. Bruce Gorrill met with officials in the Ministry of Health and received a commitment to fund a feasibility study. Val O Neil offered his farm at Clarksburg. We hired a psychologist from the Clarke Institute and some of his staff and the rest almost became history. The Ministry accepted the results, but refused to fund the Ontario Society for Autistic Children on the basis that it could not fund a parent group.
To overcome that obstacle we incorporated Kerry’s Place which had a different board of directors. The President of OSAC was an ex officio director. That relationship continued for a short period until the then President who was from Ottawa stopped coming to meetings. Eventually, since OSAC stopped participating, the Kerry’s Place By-Laws were amended to remove that provision.
Val agreed to mortgage his farm and build an addition to his home to house 11 individuals provided Kerry’s Place paid enough rent to cover the mortgage. The Ministry of Health accepted the budget presented. Construction began and we started interviewing for clients. The Ministry of Health after a few years ceased funding because we were unable to cure the clients within two years. Kerry’s Place then fell under the jurisdiction of the Ministry of Community and Social Services.
But we were still having difficulty in getting new funding from the Ministry as the bureaucrats were reluctant to advocate for funds for a new organization and gave preference to established groups which were receiving funds. No one wanted to be associated with a group which may prove to be an embarrassment.
We continued to raise our profile by having OSAC, Kerry’s Place and the Geneva Centre co-sponsor the first national conference on Autism.
What are some of the lessons that we learned?
- We learned that we had to get in a position to influence government policies. In the beginning, we had to bypass the bureaucracy by approaching influential members of the Davis Cabinet. The secret was to join key riding associations and move up to the executive level. No matter what party is in power it is necessary to get a foot in the door. Then it is up to you to sell the message. When the NDP came to power we thought t hat due to its social conscience the taps would flow. In fact it was the least accommodating government. This was in part because money was tight, but also because we had no one close to the powers that be.
- We learned that advocates for Autism have to speak with one voice. Where there are competing groups seeking different supports for the same cause, governments tend to do nothing. We formed the Canadian society for Autistic Children and sent Howard Weinroth to Nova Scotia, Alberta and British Columbia. In each of those provinces there were competing autism societies and until they accepted Howard’s advice and come together with to speak with one voice, no government funding was made available. A few years ago, Glenn Rampton and I met with a newly appointed Minister of Community and Social Services in the McGuinty government. She was confounded by a stack of papers on her desk all dealing with autism with every group asking for funding for a different program. She complained that they are competing with each other asking for different policies and how was she to make a decision.
- We learned how to dance with changes in government policy. A policy change is there for a reason. We first met this when Health stopped funding. Later Education refused to pay to bus the clients between Clarksburg and Toronto on weekends. This meant we had to relocate Kerry’s Place to Maple. It is important to embrace the change and position oneself to be the agency of choice. This became critical as more and more changes were implemented.
- We learned that we could not rely on anecdotal evidence. Both the Ministry and KPAS cooperated in the establishment and subsequent growth of a clinical department.
- We learned that to become and continue to be successful every member must be willing to participate in some meaningful way. There should be no passengers on the bus. The disappointing lesson is that as the organization matured, new members claimed as entitlements what the original members fought to achieve. I know the demands that a person with an ASD places upon the parents, but to use Bob Rae’s phrase-“We are all in this together.” If an agency becomes complacent there will always be a hungrier group chasing the same dollars.
In summary, notwithstanding that OSAC and Kerry’s Place drifted apart during this period, the dreams of the founding members were recognized by moving from no recognition and no services to a raised profile of Autism, the establishment of several chapters and at least 3 treatment centers across three regions in Ontario. There is not room to mention all the key players in a short article. Many important contributors have died. The current parents of sons and daughters with an ASD owe a great debt of gratitude to those mentioned and unmentioned above.
By the same token those who struggled with a $5,000.00 budget would be astounded by the almost $ 50,000,000 present day budget of Kerry’s Place and the high profile achieved by Autism Ontario. Each time I open the newest magazine my mind is blown away by the evolution of the organization which could not have been accomplished without the spirited leadership of Marg Spoelstra and the dedicated group of Chapter Presidents. But they need every members support to meet the current and future challenges.
The opening quotations were my introduction to Autism following my son’s diagnoses at the West End Crèche in Toronto. The reference to autism being a form of Childhood Schizophrenia is from the textbook I studied in Abnormal Psychology in 1959 six years before the birth of my son.
