As an autistic person and a mother of autistic children, I can only feel deep unease, amazement and great disappointment with the Autism Spectrum Disorder (ASD) Action Plan filed Tuesday by the Government of Quebec.
I would first like to acknowledge Minister Lucie Charlebois' initiative to hold the first Forum québécois de l'autisme last year, as well as for developing this action plan, including autistic children and adults, filled with sincerity, compassion and good intentions.
However, I'm disappointed.
Among the planned investments, most of the money will be used to increase rehabilitation and intensive behavioral intervention (IBI) services for children aged 0 to 5 years. However, during the Forum québécois sur l'autisme, a vote was taken and 63% of the members were opposed to this unique intervention measure. ICI are increasingly questioned both for their effectiveness and for their ethical side towards the deep nature of autistic people. Families of autistic children deserve to know the truth about these methods in order to takean informed decision, but more importantly, families should have a choice in the method used.
Adapted services
Only a small portion of this plan suggests establishing guidelines for the use of other methods, but none are mentioned. Once again, during the Forum, mention was made of the SACCADE model allowing autistic people to have access to information, communication and the perception of emotions. Laurent Mottron offered a parental guidance program by equipping parents and daycare educators so that they could deal with the specific neurology of their child in their daily educational intervention.
Unlike IBI, the support methods take into account the particular cognitive structure of the autistic person. Also, there is no mention of the various services such as speech therapy, physiotherapy, occupational therapy, zootherapy, etc.
Misunderstanding
The way autism is addressed throughout the action plan leaves me with a bitter taste. Autism is neither a public he alth problem, nor a disorder, nor a deficit. Who will promote the appropriation and development of knowledge among stakeholders in the various networks?
When we draw a general portrait of autism in Quebec, we can only see major gaps in its understanding. Thus, I wonder what will be the basis of this training and how can we help autistic people when the understanding of the functioninginternal autistic thinking is still misunderstood.
Autistic adults who could make an invaluable contribution to understanding autism have unfortunately been excluded from the development of this action plan. However, adults with autism exist, express themselves and they have a voice they want to be heard.
Unanswered Questions
Multiple concerns still remain:
- When will autism be approached from a new angle: that of Neurodiversity?
- When will we stop treating autism as a disorder and as an epidemiological phenomenon?
- When will we use appropriate and respectful terminologies to talk about autism?
- When will definitions of autism improve in order to improve understanding of autistic thinking and consider autistic people as whole persons?
- When will we stop separating autistic people into two clans: “mild autistic” and “heavy autistic” and take into account that an autistic person evolves at their own unique pace?
- When are we going to distinguish between autism and intellectual disability?
- When are we going to tell the difference between autism and behavioral disorders?
- When will the testimonies of autistic adults really be taken into account?
- When will parents get help to accept and understand their child's condition?
- When help and support methods are ethical and able torespect autistic thinking?
- When will parents be equipped to offer parental guidance adapted to autistic neurology?
- When will lateral tutelage learning methods be brought to the fore?
- When will there be training for crisis management and understanding (autistic meltown), self-harm and other problematic behaviors?
- When are we going to take the special needs of children and provide them with adequate support without waiting for a diagnosis?
- When will true inclusion be fostered in schools and workplaces?
An Invitation…
I personally invite Minister Lucie Charlebois, Minister Sébastien Proulx and Minister Gaétan Barrette to the first Neurodiversity Fair to be held on Sunday, April 30 at UQUAM's SH pavilion.
