A Word from the President
From “Image” Fall 2014
I will once again talk to you about politics and the importance, for us parents, to express our opinions and speak out loud for our children and all individuals with autism. What is happening right now, at the government level, has resulted in losses of previous gains, the closing of files, waiting lists, and limited service periods in the field; in short, we are losing the little that we had. It is like if we did not exist anymore for the health and social services system.
The government’s magical thinking leads us towards the CSSSs by trying to convince us that our children and individuals with autism have the same rights as all citizens. The reality is that autism has never been evaluated adequately by the government. In 2003, the first national action plan, “Un geste porteur d’avenir”, did not reflect autism as a whole. By trying to mix us with intellectual handicap, they misrepresented all of our needs and missed an opportunity to do a real evaluation of the situation and develop specific service programs for all the autistic clientele. I think that this document is “out-of-date” and our file should be completely revised.
We have met the Political Advisor of Mr. Bolduc. The Ministère de l’Éducation clearly does not wish to feel “responsible” for autism. For them, the school boards should manage with the budget allocated to them. We have insisted and mentioned the constraints related to the increase in the number of autism cases, difficulties to organize training and develop a real expertise, we talked about exclusions, behavior disorders, etc. We have proposed some projects regarding supervision, expertise, SBDs and there did not seem to be much interest because blah-blah… and they went back to school boards.
We have also met the Minister for Rehabilitation, Youth Protection and Public Health and responsible for our file, Mrs. Charlebois, as well as Mrs. Montpetit, Political Advisor for the Minister. The discussions went well, but we do not have much hope. In the current context of restructuration, the government really thinks that there will be more money available if they cut management positions. Furthermore, Mrs. Charlebois and Montpetit were visiting different service points in Quebec and they were trying to convince us that there were indeed specialized services everywhere as well as medical research and that there were a lot of services offered in Quebec, but we, poor parents, did not know about them. They were putting much hope in the autism show and believed that it would allow us to find all these great services.
I have been militating for a long time and I can tell you that autism is now in a quite critical and dangerous situation. What can be done about it? The only thing that works for me is “advocacy”. Not only with the government, but also with the population.
Autism is still not very well known. Because of the complexity of our clientele, people are still hanging on to myths and false beliefs. The media are interested in dramas and prefer to ignore the more scientific side of autism. People still think that autism is a “genetic” defect and that not much can be done about it. However, governments will act only if there is pressure from the population. As long as people show no interest for autism, governments will ignore us. Even though I think it is “criminal” and not ethical, this is how it works.
“Advocacy” might be compared to an obstacle course. Complaints remain important because they are compiled and they give a “concrete” picture of the situation demonstrating that services are inadequate. The closing of files, partial services, waiting lists, “periods” of services, quality of services or complete lack of services, etc. represent reasons to make complaints. School exclusions, the fact that there too many students in a class, the lack of expertise, etc. are also reasons to make complaints.
Visits to your MNAs can also be helpful. You let them know that you feel you are alone and the future of your child depends on the services he should be receiving.
We can give you a media kit which shows the increase in the number of cases and lack of services and proposes possible solutions.
The search for causes must be considered as a “priority” if we want to talk about prevention. Autism is not “free”. There is a cause for everything. And for autism, there are many causes. Every child is different and has been confronted with different environmental aggressors. We could say that autism is nothing more than a symptom of biochemical disorganization in the body of a child. The results of recent clinical research are showing gene breakage due to environmental aggressions that affect the immune system. The body cannot defend itself properly and detoxify. If you need more information, the Autism Research Institute remains a pioneer in this field.
And do not let people tell you that no scientific research proves the causes of autism. Since 1995, more than 150 research studies have been published. They are complex, but very interesting. And they were conducted by “real researchers” in “real universities”. It seems that in Quebec, we doubt everything, even if this threatens the health of children.
All this, to tell you that people will be more interested in a cause for which there are concrete actions and hope than fatalistic and hopeless situations. We must convince people by saying that when autistic individuals receive the proper services in sufficient quantity and quality, the possibilities are endless and they can improve significantly. The clinical research studies I told you about allow children to recover completely and for other children, to improve considerately. Medical treatments combined with the appropriate medical programs are essential for our loved ones.
We can also mention respite, exhaustion and the need for leisure activities, etc. They are also part of our advocacy actions.
This constant rise in the number of autism cases should make us think about “prevention” and the search for causes, but in our current system, prevention takes the form of early screening. Early screening is important and helps to receive services more rapidly. However, this is not prevention. Prevention makes it possible to act on the cause so that the number of affected children may be reduced.
We will continue our meetings with the opposition and various network authorities to ask them for their help in our actions with the government.
Thanks a million for your participation to all our advocacy actions. I know how demanding and frustrating it can be. We must keep faith. We are the voice of our children and individuals with autism. Without actions, autism will remain in the shadow. Thanks also to all those who undertake advocacy actions by writing to the media, writing books and organizing fundraising events. All these actions are important and part of militancy.
Autisme Montreal’s President