Several months ago I had an incredible opportunity to speak at a United Nations Committee on the Rights of Persons with Disabilities (UNCRDP) side event in Geneva, Switzerland, on the topic of restraint and seclusion. Since then, my life has not slowed down, and sometimes that trip feels another lifetime ago, not this past April.
Regardless of the exact issue I’m dealing with, there are so many things that have me thinking of my speech lately.
I think about the rarity of having Autistic people being the ones to discuss these issues. Of how it felt to return to the UN the next day and realize that people like me just don’t get these opportunities, we don’t get this far. It was such a strange feeling.
I remember the amazing joy I felt of seeing a young Autistic there, on holiday in Geneva, visiting the UN. That memory makes me keep working when it feels too tough sometimes, because I want young Autistics to have a future.
And so, several months late, I give you my speech.
Thank you for the opportunity to speak here, as an Autistic Advocate, during the occasion of Autism Awareness day.
This past weekend, during the many different campaigns and events associated with Autism Awareness day, Autistics from around the world, including Canada, expressed their desire to be viewed as people, not problems, burdens, a disease, or an epidemic.
Today, during the rest of this month, and every day, I sincerely ask you to remember that.
When we are thought of as problems, that is when it changes from people working with us, to instead focusing on “fixing” or normalizing us.
Rather than de-escalating stressful or difficult situations autistic children face in school, these situations are often further escalated. Instead of working with students to develop coping methods for when they are overwhelmed, normalizing therapies such as ABA take away students current coping strategies, do not allow for the creation of new, autistic friendly coping methods, and frequently leave students traumatized.
Instead of assisting these students, this situation is worsened by the usage of restraint and seclusion.
As an elementary school student, I was aware of my school’s time out room. It was a small windowless room, with the handle on the outside at normal height, while the inside handle was at the top of the door, so only teachers could reach it, not students. The door locked automatically when it closed.
The existence and use of this room was not a secret, just as the use of restraint and seclusion today is not a secret. It was however something we were discouraged from talking about, from asking too many questions. We would be reassured that this was something for “other students”. This continues to be a common attitude in Canada, that while as Canadians we might have suspicions, but it is easier to believe something so horrible does not happen, not here. This is made more challenging as documenting incidents is not legally required, and information on their usage can be hard to obtain, even for families, who are often not informed or aware.
When families do find out, it is rarely from the school, as was documented by a 2013 report from British Columbia. Most found out about the restraint or seclusion of their child from somewhere else. Nearly half of all respondents reported physical injury or obvious signs of pain occurred during the restraint. Also to be considered is that often signs of pain in autistics are not easily recognized by non-Autistics. 79% of respondents reported emotional trauma as a direct result of seclusion. The presence of emotional and psychological trauma is also notable as the negative changes on behaviour could then be misinterpreted and used as justification for more restraint and seclusion, instead of stopping the practice and seeking appropriate care for the child.
Currently, restraints and seclusion are still used in schools in Canada. In Toronto, there are section 23 schools with classrooms where students can be handcuffed to their desks. Many training programs still teach the use of restraints. While they are taught with the intention of being used in emergency situations, there is no evidence that this is being followed, and no clarification as to what is meant by an emergency.
We can not create harmful environments, and then use that as justification for the usage of restraint and seclusion. We cannot use the behaviours demonstrated by traumatized individuals to then continue to justify the usage of restraint and seclusion. We should not be justifying the usage of restraint and seclusion.