A Word from the President, Fall 2013

From “Image” Fall 2013 

Letter to Mrs. Pauline Marois

The Parti Québécois is one of the political parties with the greatest awareness of autism. In the 1990s and the beginning of the years 2000, there were numerous meetings, discussions and working committees on autism with the PQ. You were yourself informed and solicited as Minister of Health and Education. Despite all the efforts made, however, the results obtained following those were quite disappointing. We were told about the complexity of autism and the difficult choices that a government must make when priorities are established and autism was never a part of these choices. Yet, in the 1990s, the state of the situation was already alarming, not only for families and autistic individuals, but also for the authorities from the different public networks that were unable to help families in distress. Even in 1990, the increase in the number of cases was becoming more evident and it contributed to this disorganization. Of course, at the time, your government granted a few millions to help families facing a crisis situation, but in a context of a lack of clear mandates and specific expertise and as a result a lack of vision and solutions, the autism situation continued to deteriorate.

In 2003, the newly elected Liberals granted a sum of 30 millions for autism and they launched their national action plan: “Un geste porteur d’avenir”. This budget, clearly insufficient, officialized autism as a specific entity. It was a good thing for us. However, the action plan focused on children less than 5 years old and the new Intensive Behavioral Intervention (IBI) program to develop for them. The rest of the clientele was clearly forgotten and almost the entire budget was for children less than 5 years old. We understood that those 30 millions were a strategy to direct the class action regarding early intervention programs. Nonetheless, we were happy; we had to start somewhere and young children had to be helped quickly. We were hoping for a quick follow-up and reevaluation of our file to better define autism and that the number of people affected, the increase in the number of cases, ASD without ID, behavioral problems, in brief all of the autistic clientele. Unfortunately, we quickly realized that our file was “closed”.

In 2005, the health agencies worked so as to transfer the autistic clientele to the HSSCs. It is unimaginable to transfer a clientele not fully understood, underserved, in need of specific expertise and abandoned without any budget to the HSSCs. The Liberals decided to address the waiting lists, which had to be abolished at all costs. The CRDITEDs then started to close files, to implement complex and discriminatory access mechanisms by screening admissions and organizing their service offer per “episode”. In short, the waiting lists decreased, but parents were left to themselves.

We saw all these decisions and indifference as contempt, endangering our children and autistic individuals and this created instability for numerous families. And all our parents would tell you that if our children had received a cancer diagnosis, they would receive proper attention, but with autism, you have to work things out ourselves. It is sad and unfair that lives are so greatly jeopardized. We were put aside and abandoned so often that we are asking ourselves why this is so, since the number of cases is constantly increasing!

Thus, we asked parents and autistic individuals to complain everywhere so as to sound the alarm. This gave rise to two inquiries by the Quebec Ombudsman and we have developed a new advocacy action plan. Your party became, with Mrs. Doyer, a precious partner in this regard. The PQ was once again made aware and informed about this disorganization, crises, exhaustion, priorities, needs and demands. This is why, Mrs. Marois, we know that you are aware of the complex and precarious situation of autism.

When the PQ came back to power, we quickly asked and obtained to meet with the Ministers of Health and Social Services and Education. We were expecting something more than the “painful choices” a government must make.

Mrs. Marois, it is now time to act! We are enclosing the statistics from the Minister of Education to better explain this increase that I constantly talk about.

Do you know that with regards to autism, the CDCs (Centers for Disease Control and Prevention) estimate that 1 in 88 children has been given an autism diagnosis in the United States and 1 in 50 in some states? Since these figures are conservative, we know that there are actually more. If we do not take preventive actions and autism does not become a priority file, can you imagine the costs that the government will have to pay to take care of this complex population when we, the parents, are no longer here?

Mrs. Marois, do you know that autism is not a handicap or a mysterious neurological condition?

According to the results obtained by researchers and clinicians, autism is the symptom of an auto-immune disease related to environmental aggressions. In the mid-1990s, the Autism Research Institute did some clinical research, with the help of several researchers and universities, on the causes of autism and various medical treatments. The results are very encouraging and prove that autism is caused by the environment.

The immune system is compromised, breaking the “genes” that are usually able to expel metals and toxins from the body. The intoxication event starts at the fetal stage. Several treatments are helpful to detoxify the body and offer spectacular results. Autism is reversible and treatable. With good educational programs, these treatments allow many children to function normally. We have to put aside the myths, theories and fears that are harmful and slowing down our cause.

Mrs. Marois, we would like to meet with you to inform you about our awareness actions, our demands and, above all, specific and realistic solution avenues. We do not thinkg that the government has a “magic wand” and are aware of the great task awaiting you.

We, the parents, have lost our confidence in the CRDITEDs. They have become case handlers and their vision of autism depends on bureaucracy. How can they inform you about our needs when all our files are closed?

Because of the constant increase in the number of cases and its complexity, autism has become a very important problem. In Québec, we have to innovate and work differently with those who have a vision and field expertise. Prevention of autism should be a priority. You will find enclosed our media kit.

We hope to hear from you very soon and wish to thank you for the consideration you will give to this request.

ATEDM President

Carmen Lahaie

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