Recently, the National Institute for Excellence in Health and Social Services (INESSS) undertook a new study to determine the particular profile of autistic children who would respond positively to intensive behavioral interventions (ICI). By the same token, we want to determine the profile of autistic children for whom these interventions would not be beneficial.
Note that in 2014, INESSS concluded in a report1 that “the evidence on the effectiveness of rehabilitation interventions remains insufficient to conclude beyond any doubt that an intervention produces the expected effects”. In addition, INESSS added that in the systematic review2, “the level of evidence as to the effectiveness of the interventions was assessed as ‘insufficient’, with the exception of the UCLA/Lovaas program for which this level is qualified as ‘low’”. Despite this lack of effectiveness, INESSS recommended that ICI continue to be provided in Quebec for preschool children.
Thus, if INESSS itself concludes that ICIs are insufficiently effective, how could it conduct a study that would determine the profile of autistic children in whom ICIs would be effective? Then first of all, how is it that INESSS recommended a medical intervention that does not produce the expected effects in young autistic children in 2014?
Medical intervention should not be recommended lightly. Scientifically, an intervention must demonstrate its effectiveness. Above all, the studies must demonstrate that the benefits of the intervention outweigh the harm incurred. Is that the case ?
For several years, there has been a lot of controversy about ICI. Already in 2016, the Dr Laurent Mottron3 pointed out that “early intervention in social skills and language in autism has not yielded conclusive results”. When using these methods, “it’s like shouting at a congenitally deaf person, instead of helping him with sign language”, he illustrated. Most recently, the Canadian Academy of Health Sciences (CAHS) report4 mentioned that although many research studies had been carried out on the subject of intensive behavioral interventions (IBI) and that these demonstrated their effectiveness, the methodological rigor of this research was weak.
Change our gaze
The autistic community speaks out against these intensive programs which are a form of violence against autistic people. Thanks to the voices of many autistic people, the recognition of autism as a divergent cognitive profile through the concept of neurodiversity has also changed our view of autism and diminished efforts to mitigate the intrinsic characteristics of autism. autism and thus respect the atypical profile of autistic people. The neurodiversity paradigm calls for an emphasis on supporting the development of natural skills, regulating emotions, inclusive participation, building on strengths, and the importance of providing optimal conditions for that autistic people have a fulfilling life5.
In addition to not corresponding to the particular profile of autistic people, these methods go beyond the fundamental rights of children.
These interventions are unethical and this is also the observation made by the latest ACSS report. All issues related to ethics are not considered when Quebec recommends intensive behavioral interventions, i.e. the inherent violence of these methods against autistic people5. More and more adults with autism who have been forced to follow these behavioral interventions testify to the violence suffered and the trauma caused which greatly affects their quality of life as adults today. Moreover, it has been shown that 46% of autistic people who have been exposed to these interventions in their childhood present in adulthood with post-traumatic stress disorder.6.
Involuntarily, behavioral interventions send the following message to the child: my behaviors, my gestures are bad, so I am bad, I am useless, I have no value. When I am in distress, I am ignored, I am alone. My emotions and my needs are not legitimate. Also, these interventions make autistic people completely dependent on their external environment, unable to recognize their emotions and their basic needs.7.
Contrary to behavioral interventions, a developmental approach based on the support of cerebral maturity, the reception and the regulation of emotions allows the child to become aware of his body, to fully feel his sensations, his emotions which are the very basis of his needs and therefore of his autonomy. What do we want to offer autistic people?
2. A systematic review conducted in the United States for the Agency for Healthcare Research and Quality in 2011 and contextualized for Quebec, ie evidence.
3. Early intervention for children with autismLaurent Mottron, MARDAGA, 2016
5. Ali et al., 2012; Milton et al., 2014; Mottron, 2017; Lai et al., 2020