From “L’Image”, Fall 2011
ATEDM’s 30 Years of Existence – A Brief Summary of its History
In 1976, courageous and determined parents of autistic children decide to gather and create an association to defend the rights of autistic individuals and their families and to promote awareness regarding this unknown syndrome. We have to remember that at that time, most children who received a diagnosis of autism were placed in an institution for the rest of their life. People thought that the mothers were responsible of their child’s condition because of their emotional frigidity and that the children had to be apart from their families. We can imagine what those children had to live in those institutions and the pain experienced by the families. It is within this context that the Société québécoise de l’autisme (SQA) was born. The challenge was immense. I wish to salute the courage of these parents and thank them most sincerely.
In 1981, the Montreal chapter of the SQA was created. Its goals are the same as those of the SQA: defense of rights, promotion and sensitization for the Montreal region and the nearby regions, namely Laval and the South Shore.
The funding of community organizations during that period was non existent. Only the Office des personnes handicapées du Québec (OPHQ), created by the Parti Québécois after their election in 1976, had the possibility to grant small budgets to help organizations working for the defense of rights.
In 1981, the SQA’s Montreal chapter had no budget and no premises. Everything was being done in the kitchen of volunteer parents involved in the Board of Directors. All remained to be done. There was no early stimulation, no classes for autistic children and no recognition of their rights. The government was not demonstrating any interest. At the time, the defeatism of psychiatry influenced all the decision-makers: nothing could be done for those turbulent and troubled children. Thus, this is the context that forced those who cared to roll up their sleeves and start working.
The search for recurrent operating budgets and recognition as a credible community organization remained a great challenge. Foundations and donors can give away money only if the association has its own address. Therefore, there have to be a specific location and a managing coordinator, but how can you have both without budget? Our credibility and the recognition of autism as a true entity were related to the granting of a first budget. To defend the rights of people, we had to be recognized officially. Even at that time, money was the sinews of war!
In 1984-1985, parents whose children were institutionalized at the Hôpital Rivières-des-Prairies initiated a class action lawsuit because of the abuse and bad treatments suffered by their child.
The results of the inquiry confirmed those abuses: isolation, restraints, overmedications. To the great satisfaction of those parents, the government decided to go against the institutionalization, but forgot to plan services for this clientele who had to stay with their families from then on. There was no organization of services to replace the hospitals. The Montreal chapter joined the parents of children with an intellectual delay or other physical handicaps to militate in order to obtain adequate budgets and services. We became active members of the Comité régional des associations en déficience intellectuelle (CRADI) and Regroupement des organismes de promotion du Montréal métropolitain (ROPMM). We had to unite.
At that time, the government recognized only two handicaps: deafness and blindness. Since the word autism did not appear on any official documents of the government, we simply did not exist for them.
For the Montreal chapter, the 1980s are intense due to demands and sensitisation. However, to request something, we have to know what we want. If we are asking for services without being specific about the ones that are appropriate and recommended for our children, they can give us anything.
Around 1987, two psychologists, Gilbert Leroux and Paul Maurice teachers at the Université du Québec, join the Montreal chapter and help us to write the first service organization model for the autistic clientele. All the existing educational programs were then named and classified. The emphasis was put on programs that had been scientifically tested and those with the best results. We opted for the Applied Behavior Analysis (ABA), from Dr. Lovaas (UCLA – University of California, Los Angeles) because he had just published a research proving the efficiency of this approach with astonishing results. We were talking about school integration, TEACCH program, specific classes for autistic individuals, etc.
This document served as a stepping stone. It specified that we wanted and how to obtain it. Of course, we had to remain open and to search for everything that could help our children, but this document was an important tool, as it was written in collaboration with the UQAM teachers.
In the 1980s, the first day camp for autistic children was also created, the camp Beding Bedang, thanks to the ingenuity of a social worker and students who became day foster families. Thanks to Marie Jobin, Christiane Bureau and all those who worked at this camp. They were pioneers who were able to integrate within society children who were rejected everywhere else. They served as models to prove that yes, our children could learn and yes, they had potential.
In 1989, the first specific class for autistic children was officially created at the École St-Étienne-Apôtre of the CSDM. It was a huge success for the Montreal chapter. Finally, a first specific service. Thanks to Pierre Tremblay, who is responsible for special projects at the CSDM. His ability to listen and receptivity made it all possible.
Around the end of the 1980s, the persons responsible for mental health at the CRSSS of Montreal (Centre régional de santé et de services sociaux de Montréal) contacts the Montreal chapter. They are working at a mental health reform, but the children have been forgotten. Since the Montreal chapter is very well known because of its various committees and actions, a first official and recurrent budget is offered, which allows us to find a location and be more structured. It was a new beginning.
During the 1980s, the chapter also took part in several committees of the Hôpital Ste-Justine to mobilize and change the course of things. There were a lot of efforts invested by the Board of Directors, but unfortunately, this hospital demonstrated some resistance and ignored almost completely all that related to developmental disorders.
Thank you to our Chairmen and militants of the 1980s: Aline Locas, Manon Dagenais, Hélène Côté, Line Brabant, Peter Zwack, Gilbert Leroux, Paul Maurice. I joined the SQA and then the Montreal chapter around 1983-1984.
Once the first budget was obtained, we had to officially separate from the SQA to become a legal entity and be able to hire our first employees. In 1991, we became the Société de l’autisme du Montréal métropolitain.
Thus, first premises, first coordinator, Lucie Grenier, who was a very determined pioneer. We benefited from all the openings and employability programs of the 1990s. The search for budgets nevertheless remained a great preoccupation. Families did not receive any services and they were desperate and tired. We had to develop services and respite to replace what was lacking from the government.
Here is a list of the great realizations of the 1990s:
– Documentation center.
– First TEACCH training session at the École Saint-Pierre-Apôtre, which changed the educational history of autistic individuals in all of Quebec.
– TEACCH training sessions developed with various caregivers.
– Organization of conferences, mostly about education and communication.
– First official committee for autism at the Régie régionale of Montreal with a $200,000 budget in 1995.
– First official committee regarding the services to offer to individuals with severe behavioral disorders (in 1995) to demonstrate other methods to respond to the needs of those individuals.
– Active participation to the monitoring committee created by parents whose children were overmedicated and restrained in psychiatric institutions.
– In 1994, creation of the first support groups for individuals with Asperger syndrome.
– First respite house.
– First official budget for the organization of respite.
– Creation of a foundation, the Fondation Autisme Montréal.
– Separation from the nearby regions, namely Laval and the South Shore, which are obtaining their first grants to start their own association; this is during the 1995 health reform.
– In 1996, publication of the first official document on autism and the services to be offered to this clientele. First service guide without budget, but there was a need for it.
– Numerous papers, documents requesting actions along with multiple committees and meetings.
– Active participation to the creation of the first service consortium for behavioral disorders and to different evaluation committees that followed the implementation of this new service; we were the official and virulent “critics” of those services that were not what we had hoped for unfortunately.
– Thanks to Peter Zwack and Jacques Forget, both UQAM professors, a large committee was created to discuss, validate and make decisions with regards to the most useful and efficient programs for autism. This committee’s role was to bring together various institutions and researchers or professionals to discuss and influence the active research done according to the needs of parents and various settings. This committee is a research cooperative… and comprises a partnership with several universities, institutions and researchers as well as UQAM students.
– First official courses on autism at the UQAM.
– Participation to NADD (National Association for Dual Diagnostic).
– Participation to DAN! (Defeat Autism Now!) working on the medical causes of autism.
– The name of the Beding Bedang Camp is changed for Bergamote. We are able to obtain additional budgets to open new places. – Opening of the first summer day camp for teenagers and young adults, the Rock-Camp-Bol Camp.
The 1990s are decisive. The autism cases are increasing constantly and substantially throughout the world. We cannot be ignored anymore. We are present in all levels of the services network and since there is no national plan, there is chaos. Parents are not the only ones asking for help anymore. Schools, CLSCs and diagnostic hospitals are also making requests to the government.
In 1998, our name was changed. Since the DSM-IV has classified autism as an autism spectrum disorder, diagnostic institutions are starting to give an ASD diagnosis for children displaying autism symptoms. Finally, since the parents of children with an ASD did not identify with autism, the name of the organization was changed for ATEDM. Thank you to all the militants, volunteers, employees, collaborators who were there during those intense years, in 1990.
Thanks to Micheline Gervais who was Chairman in 92-93. I have been Chairman for several years, because I have decided to work actively for autism and to make it my life’s mission. It is a personal choice, but alone, nothing is possible. Therefore, thanks to all the people who have been there with us.
– Opening of the Matériathèque.
-ATEDM organizes the first international medical congress on autism in Canada regarding the search for the medical causes of autism and biomedical treatments. This event becomes a very important awareness tool and brings a new perspective on autism. We have had exceptional media coverage throughout Canada and more than 400 participants. Thanks to this first congress, we received a recognition award from the MSSS because of its innovative nature focusing on prevention and the health of the population. We have continued to hold this event in 2002 and 2003. With the change of government, however, we lost the grants that were essential to finance it.
-We are still promoting awareness regarding the medical aspect of autism with an annual conference.
-The number of autism and ASD diagnoses is continuing to increase. We have repeatedly put pressure on the government to ask for the recognition of autism from the granting of budgets and numerous meetings and committees are held for that purpose. ATEDM is not fighting alone: hospitals, CLSCs, schools, readaptation centers are also crying for help.
-At the same time, parents are organizing a class action to obtain a financial compensation because of the absence of early intervention programs, such as ABA, that are scientifically recognized and helping autistic children to improve considerably.
-In 2002, during its election campaign, the liberal party made autism one of its priorities. In 2003, the recently elected liberal party grants the first official budget for ASDs and this confirms that autism is being recognized as a specific entity. This 30 million budget comes with a national service plan. The CRDIs are given the mandate to serve all ASDs, including the Asperger clientele. We salute this long-awaited recognition, but are still concerned. There are clearly not enough budgets to respond to all the needs. The increasing number of cases and absence of services for such a long time have created the chaos that we know so well. Furthermore, most of the money must be invested for children less than 5 years old for the development of early intervention programs such as IBI (intensive behavioral intervention) 20 hours/week and the other clienteles are thus left aside. We understand that the government wishes to invalidate the class action.
-The years 2000 are characterized by the absence of leadership from the government with regards to autism. The number of cases is increasing tremendously. The statistics of the ministère de l’Éducation demonstrate a 100% increase every year. Despite those impressive numbers, the government does not seem to have been listening since 2003. Our file is still given to the Health and Social Services Deputy Minister who has no budget or great power. Because of this government’s reforms, all the decisions and orientations regarding health are taken in Quebec; the health agencies are only implementing the recommendations of the MSSS, which narrows down our action power with the health agency. We have lost the government employees who knew our file and this has complicated our actions even more. We do not have a resource person or someone responsible for autism anymore.
-The lack of expertise and funding contributes to maintain the chaos that we have been experiencing for many years. The CRDIs have developed a complex programming that does not correspond to the needs of the clientele. They have implemented a programming focused on institutions that serves as a structure for their functioning. However, what we need is a programming oriented towards the clientele and designed to respond to the specific needs of everyone. To add to the problem, the MSSS is asking for the transfer of autism to the CSSSs, which are already facing a deficit budget and a whole population to serve. Furthermore, the MSSS is asking for the merger of the CRDITEDs, which will result in more instability.
-In the past few years, there has been an increasing number of families in distress and autistic individuals with behavioral disorders. This is directly related to the lack of field expertise and adequate budget. Waiting lists are getting longer and longer.
-The Quebec Ombudsman received numerous complaints and has taken an interest in our fate. He started by investigating the services offered to children less than 5 year old and has presented the results to the Prime Minister with some recommendations. The Quebec Ombudsman is also currently investigating the services offered to adults and working on a report about this.
-Following numerous complaints and denunciations, ATEDM obtains a non recurrent crisis budget of $100,000 to help families in distress. Until now, we have been able to receive it every year. Through our actions, we have been able to demonstrate other ways of working with more satisfying results.
-ATEDM has also managed to open a new respite house together with the Fondation Yvon Lamarre and has thus increased the number of places available.
-ATEDM has worked closely with Action main-d’œuvre on an innovative project to develop an employment center for individuals with ASD without intellectual delay. After several years of work and an important number of collaborators, this project was launched and became the “À l’emploi” program, which serves as a model in all of Quebec.
-Every year, ATEDM organizes an awareness and solidarity walk in April, the autism month. Thanks to your participation, this event is getting bigger every year. In 2011, there were close to 1,000 participants.
-In 2011, since the government is no longer demonstrating interest in autism, ATEDM decides to organize a series of actions and different manifestations for the government with the collaboration of as many parents and autistic individuals as possible. We have to roll us our sleeves and go to the barricades. An important gathering for solidarity with the presentation of your testimonies in front of the Prime Minister’s office is planned in November. Other actions will follow.
In conclusion, I wish to thank all those who have contributed to the success and life of ATEDM. A great dedication and exceptional qualities are essential to work for a community organization fighting for a difficult cause. Thanks to our Directors General, Lucie Grenier, Nancy Lacoursière and Julie Champagne, our current Director. They have worked without ever counting the hours and were pioneers. Thanks to all the employees of the last 30 years, including the camps and Maisonnette caregivers and shadows working at home. Thanks to all the administrators who are generously giving their time to help ATEDM function properly. Thanks to all those working with our clientele and believing in our children and the great potential of autistic individuals. Thanks to all our donors, partners, financial backers. Thanks to you, dear parents and members, for your trust in our work and collaboration. Without you, none of this would have been possible. Several collaborators have had faith in us and have contributed to bring autism into the light. I salute Gilbert Leroux and Peter Zwack who are surely still accompanying us from where they are. I wish to thank Paul Maurice, Sylvie Donais, Jacques Forget, Sylvie Bernard, Nathalie Poirier, Nathalie Plante, Sophie Turcotte, Madeleine Neveu who were very important for ATEDM and are still supporting and accompanying us. A special thanks to ATEDM’s current team who is working really hard to respond to all your needs and this, despite a lack of budget and a lot of work to be done. We must keep faith. Our determination and love for our children can move mountains. To do so, we must work together and keep going.