What will become of our autistic children, who will surely age but never grow up?
The Autism Society of Canada’s website notes there is currently “no federal government monitoring system in place to provide us with accurate statistics on the prevalence of [autism spectrum disorders] in Canada even though we do know that ASD is the most common form of any neurological disorder or severe developmental disability of childhood.”
The society has conservatively stated the prevalence of autism in Canada at one in 200 births. Yet the Autism Society of America reports that the incidence of ASD there is one in 88 births; it is the fastest-growing developmental disability in the United States. The figures are similar in the United Kingdom. Yet our government cannot accurately tell us how many Canadian children are affected.
The disorder has no known causes but scientists speculate it could be linked to genetic vulnerability and environmental factors. Diagnosis is based on key areas that include difficulties with behaviour, communication and responses to sensations. There may be co-occurring problems, such as seizures, gastrointestinal issues and other physical or mental symptoms.
There is no one-size-fits-all treatment. What works today may not work tomorrow. And what might barely hold a family together in the crisis moments (which stretch to become everyday life due to lack of support) will surely not work as our children grow older and others take their places in a system already bursting at the seams.
When a child has autism, a family has autism. Normal family life fades into an oblivion of endless nights trying anything to comfort a shrieking infant, and exhausting days employing every possible “teachable moment” to impart knowledge to a child who may not intrinsically understand or absorb skills. Everything is a hurdle to be surmounted. And it doesn’t end when a child gets older. The challenges only change, becoming more insurmountable as the child grows older and the mind does not, forever caught in its autistic loop.
Families should not be expected to carry this burden. There must be an alternative to parental burnout before the system recognizes need. Funding is scarce, programming is limited, waiting lists are long and desperate trips to the emergency room offer no hope.
How sad and ironic it is, then, that when the necessary level of care is beyond parents’ ability to provide, the last resort is to relinquish custody to the government, which was unwilling or unable to provide adequate support in the first place. Only through “giving up” one’s child to the government can a parent ensure care. And if the child is under 18, the parent must make the heartbreaking decision to voluntarily declare “child abandonment” to the Children’s Aid Society, after which the child becomes a ward of the Crown. What a horrible, demeaning process for parents.
As a mother of an autistic child, I was warned that 80 per cent of marriages fall apart when there is an autistic child in the family. True or not, my 18-year marriage is just another statistic now, because we could not negotiate the looming question of future care. My daughter has a winning smile, stands as tall as I am and can throw a wicked punch.
If one child in 200, or more likely one in 88, is affected by ASD, do the math. That’s a lot of abandoned families. What’s it going to take for the system to change?
Jane Wood is author of the memoir Voluntary Starvation.