Quebec ill serves autistic teens who are in crisis

Ombudsman’s report could serve as prologue to our family’s calamity, Katharine Cukier writes.

I hope that Health Minister Gaétan Barrette has read the sections of the damning new report from Quebec’s ombudsman (protecteur du citoyen) that show the damage he has done to health services. It could serve as prologue to our family’s calamity.

Maybe the doctors who run the province can picture me in the emergency ward on four different occasions this year, a broken-hearted mom singing songs from Mary Poppins to a sedated, autistic teen strapped to his bed trying to nod his head in time.

Since the fall of 2016, my son has been going through a crisis. He is not alone. The largest cohort of autistic children diagnosed in Quebec is reaching adolescence; there are hundreds like my son whose hormonal and neuronal changes cause severe behaviour problems. Because he cannot speak, the turmoil is communicated with his fists.

The government has done little to prepare for this group’s adolescence, let alone their postage-21 services. The Liberals have decimated the already scant services for autistic people, and thus this difficult phase turned into a nightmare.

Because of budget cuts, in 2015, the rehab centre that serves autistic citizens cancelled my son’s educator. By August 2016, I was asking for help, but because our “épisode de service” was finished, it took Benjamin punching out his mother in January 2017 for our request to be upgraded.

Too little, too late. By then, he needed to be hospitalized in an autism ward at a psychiatric hospital. However, under Barrette’s “reforms,” this unique unit for autistic children has lost half of its beds, therefore reducing the time it will keep teens in crisis from three months to three to four weeks.

The only way to get my son help was to declare we couldn’t take care of him.

The hospital rightly believes that once stabilized, it is better for these kids to be in a rehab residence with a specialized team. They don’t seem to be aware that there aren’t any in Montreal for autistic teens. As well, in the spring of 2016, 50 per cent of the publicly run centres were closed, because our neo-liberal government prefers the private option.

I simply can’t accept outsourcing the needs of our most vulnerable citizens, intellectually disabled people who can’t defend themselves against what is, according to the ombudsman, often mediocre, understaffed service and even neglect.

Instead of one longer, effective hospitalization, my son was sent home in March only to be hospitalized again four more times in emergency situations because the rehab centre doesn’t have a crisis residence or even enough trained personnel to provide intensive support in the home — by then my son was too dysfunctional and aggressive to live with us.

And here is the most Kafkaesque part: The only way to get my son help was to declare we couldn’t take care of him. We had to put him in the care of Youth Protection so they would find him a bed and organize services. Imagine, your kid has epilepsy and you can’t get him proper treatment unless you hand him over to Youth Protection? My son has a disability: His acute suffering is no less substantial than a child with a head injury or drug addiction. His human rights are equal to theirs. Why is it so hard to get him help?

If my son had received the services he needed, a lot of suffering would have been prevented. And it would have cost the public a lot less.

If vital services in education and in health had not been reduced by the government, my child would not be deeply distressed, living away from his parents, on a cocktail of powerful tranquillizers.

While the Liberals toasted their $2.5-billion surplus, my family descended into despair. Our joyful son has been traumatized by his experiences.

The ombudsman has demanded the government repair the damage. As far as my family is concerned, austerity is a declaration of war against the weakest members of our society.