Autism and the Need for Change

Imagine being the mother of an autistic child. Imagine raising and providing for this child for 19 years and not being able to do so anymore. Amanda Telford and her husband Alex from Ottawa, Canada spent almost two decades caring for their son the best way that they could with the resources they had available to them. The Globe and Mail from  May 10 states that the Telford’s spent almost two decades protecting their son, fighting for him to receive help in an overcrowded healthcare system and in the end, to keep him safe, left him at the steps of the government because they just couldn’t do it any longer.

At age 19 Philippe is a big guy who cannot speak or be left alone and he nods his head or points to communicate. He will bang his head so hard on the wall that he leaves dents and his hands are scarred from biting himself. He is insulin dependent for diabetes. He would disappear from the house, sleepwalk, eat foods that spiked his blood sugar as he did not know better.  He was becoming more aggressive and slapping others which caused red marks. His needs were higher and they were receiving less assistance.

There is a huge difference between looking after an infant or toddler and looking after a grown man with autism.

For children with autism, respite can be obtained (if available) to give the parents a much needed rest. Once the child becomes 18, this all changes and they become part of the adult system. The Telford’s were hoping for a group home placement for their son, but there are limited resources and they were directed to a waiting list. A year later they were still waiting.

As parents they had reached their limit and really who can blame them? Resources are lacking/extremely limited, and what does one do if they cannot manage or properly supervise an adult child who has special needs?

I am sure there are some who will think it was inappropriate for the Telford’s to have left their son at the development services office and walk away, and there are others that can empathize and see they had no other choice. Parents want their children no matter what age to be safe, supervised properly and have their health needs looked after.  One should not have to wait until a crisis to receive help.

Philippe is in a temporary home awaiting permanent placement.

Education, awareness and advocacy are needed for children and adults with autism. More services and assistance are needed which means changes are needed in the current Canadian healthcare system.

By Victoria Brewster, MSW
SJS Staff Writer