[Dr. Sheila Laredo, above right, with lawyer Mary Ebert]
The Canadian Senate heard testimony from a range of individuals with diverse opinions on all autism related issues. The Senate Committee did not delve too far into the treatment issues in its recommendations, taking a relatively safe "survey" approach of pointing out that there is disagreement about the effectiveness of autism interventions and calling for more research. The Senate Committee made no effort to weigh or assess the expertise or credibility of the persons who offered commentary on the subject. Nonetheless the Senate Committee transcripts of the evidence offered is available on line and there is some very valuable information available. One particularly important witness was Dr. Sheila Laredo who explained the concept of evidence based interventions and stated clearly that no other autism intervention enjoys near the body of supportive evidence of its effectiveness as does ABA. Dr. Laredo is both a parent of two autistic children and a researcher.
Dr. Sheila Laredo, as an individual: I am honoured to speak to you today. I am speaking as a parent of three children, two of whom have autism, as an advocate in my role as a litigant in a case, and as a researcher. I will focus my comments on funding for effective evidence-based interventions. That is in the purview of both my experience and expertise.
It is an important time to consider this as the provincial governments are starting to review their policies for children with autism, certainly, in Ontario, where I live. I feel that the federal government can play a role by ensuring that evidence-based consistent standards are developed and implemented across Canada.
With respect to my own experience, when my first child was diagnosed, our family was devastated. While my son was very verbal, all he could do was repeat what other people said. He could not respond. At the age of three and a half, he was in diapers, he had tantrums every day, many times a day, spent his time flicking lights on and off and spinning whatever he could get his hands on, breakable or not. Within months of his diagnosis, when his younger brother failed to start to speak, we knew we had a second son with autism as well.
After that diagnosis, I thought that my mother's hat would be best served using my scientific one so that I could find an effective intervention for him. It did not take long to see that the pop literature on the internet was full of contradictory, confusing and biased information.
Instead I went to the scientific literature. I was fortunate to be able to do that. That is where I found ABA. My bias is evident. I am a physician, and a PhD in clinical epidemiology, which means that my expertise is in research methods. Despite the heat and emotions of some of the witnesses you have heard, I can tell you there is a correct way to assess the quality of literature.
In my brief, under appendix A, I provided you research materials that demonstrate that there is consensus across the medical literature, psychological literature and educational literature and that there is a hierarchy of evidence with randomized control trials being the best evidence when it comes to looking at the effectiveness of interventions.
Expert opinion, like mine, is the lowest form of evidence. That is why I have provided you with all these documents to back up what I say.
Using that knowledge, I then reviewed many of the papers that I provided to you in appendix B, including the randomized and nonrandomized controlled clinical trials of the ABA intervention. While no study is perfect, there are no other randomized trials of any research interventions, nor large clinical trials demonstrating effectiveness as ABA does. Although some have suggested that the research is biased, it is consistent across research groups, across continents, across age groups and across settings, whether it is at schools, in centres, or in homes. Other treatments like facilitated communication and auditory integration have not held up to scientific scrutiny, and other interventions have had no research at all.
Despite these comments, I have absolutely no stake in ABA. The moment something else is found to be more effective, you can be that sure we will switch.
One criticism of ABA is that it has not been effective for all people. That is probably true. The fact that not all children will be cured by ABA does not preclude the fact that the majority of children will enjoy a profound and substantive benefit. My children have learned to read, write and speak without tantrums all the time and to participate in a regular class. ABA should not be held to a standard that is not expected for other interventions. When we give chemotherapy for cancer or cholesterol drugs for prevention of heart disease we strive for 100 per cent effectiveness but we do not achieve it. ABA meets and exceeds the standards we set for other treatments.
Another criticism is that ABA or IBI is unethical because it does not respect the autistic individual. I applaud those individuals that have done so well they can speak to you today despite the fact that they have not needed ABA. Unfortunately, the dismal data is that such individuals are in the tiny minority. The fortunate experience of exceptional cases should not set policy for the vast majority of individuals with autism — people like my sons.
It has been difficult for us to implement ABA. There has been little help from medical and social services agencies. We had other family members teach us how to set up and implement an ABA program. We managed, because we had many advantages. We have a highly supportive extended family. My husband and I are professionals and our colleagues have extended us many courtesies. Our children participated in the Ontario Autism Intervention Program.
With all that, we struggled. These advantages are not the case for the majority of families. Governments can help. They have started to help, but more can be done. Too little intervention will result in the majority of autism dollars being spent on providing heavily supported living or institutional living where children could have been taught to try to support themselves. It is analogous to the parable give a man a fish, feed him for a day; teach him to fish, feed him forever. However, it has been argued that ABA is too expensive.
Peter Coyte is a nationally respected health economist who has published data demonstrating that the average savings over the lifetime of a child who receives ABA, even taking into account the fact that not all children are cured and not all children even receive some benefit, is over $1,000 per child. Almost no medical interventions save money. Despite that, we undertake them. For example, diabetes costs Canadians $9 billion a year. The issue is not reallocating money from health expenditures but that we look at autism expenditures in the context of important health spending, in particular when we know a striking benefit is possible.
From Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 12 - Evidence - December 6 meeting
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