DON’T EXCLUDE THE AUTISTIC
Get their input, expert trio writes
The Ministry of Children and Youth Services has announced a revamped autism program, promising to cut wait-lists for behavioural therapies by limiting access to children under five.
This has ignited a storm of controversy from parents and advocates who are angered that children five and older will no longer be eligible for funded Intensive Behavioural Intervention (IBI).
The Liberal government grounds its new policy in clinical research that claims early intervention is the most effective way of lessening the signs of autism. They argue that it is better to invest in “treating” the youngest of children, than to continue to spread resources, leaving many to languish on waitlists while developmental “windows of opportunity” are rapidly closing.
While opposition parties join forces with upset parents to “sound the alarm,” a voice curiously absent from this heated debate is that of autistic people themselves.
As mothers, researchers, disability activists and scholars, we know first-hand how cruel our society can be for those who do not act, think, look or move in expected ways — studies show 70 per cent of autistic kids are bullied at school and there have been murders of autistic people by caregivers. We are all too familiar with narratives of autism as a tragic disorder threatening children, families and society as a whole. These narratives have harmful, material effects.
In many autistic communities, behavioural therapy is highly contested. Since the early 90s, autistic selfadvocates and scholars have raised ethical concerns about behavioural therapies that use neurotypicality — that is, behaviour that’s consistent with dominant standards of “normal” — as the sole measure of human worth and success. Autistic behaviours — flapping hands, averted gaze — are important modes of communication. Interventions that seek to eliminate these behaviours risk doing great harm to the very people they claim to be helping.
It is dangerous to assume the problem is autism rather than society’s failure to recognize autism as a way of being which cannot simply be eliminated. The intense pressure placed on autistic people to not appear autistic is creating a world where those who do not, cannot or choose not to behave like neurotypical people are left increasingly vulnerable to social exclusion or violence.
The political fallout surrounding the new Ontario Autism Program risks the further marginalization of autistic people in Ontario. While the Liberals are defending their program with promises of future generations of near-normal kids, the leaders of the opposition parties are mourning, in the words of NDP leader Andrea Horwath, a “lost generation” of autistic kids.
We’ve been confronted with endless talk of “lost potential,” “sacrificed” lives, “condemned” children and “compromised futures.” The surging rhetoric of hopelessness, tragedy and fear sets up the harmful understanding that an autistic life, in the absence of intervention, is a life without future, a life devoid of potential.
Autistic families need support. But not the kind of support or system that devalues different kinds of bodies and minds. We must challenge the idea that autistic Canadians must behave in neurotypical ways before they can reasonably expect to participate in society, forge meaningful relationships, and occupy valued roles in their communities.
Normalcy should never be a pre-requisite for “having a future.” We need to disrupt the narratives of tragedy and better prioritize access and accommodation for all autistic people.
Autistic people’s future depends on how well we treat them and on how we welcome autistic difference. Inclusion, understanding, support and access to education and community are essential to the fulfilment of all lives. Redirecting funds to inclusive, smaller classrooms for all students with accommodations, communication devices and supports to enable participation is a way forward.
Above all, however, we urge government officials to seek meaningful input from autistic Ontarians, and prioritize their needs.
As mothers, researchers, disability activists and scholars, we know first-hand how cruel our society can be for those who do not act, think, look or move in expected ways. — Estée Klar, Patty Douglas and Anne McGuire