Ultimate Autism Reality - Who Will Care For My Autistic Son When I Am Dead?
Posted Aug 24 2008 10:36pm
The great and unshakable certainty in each person's life is that it ends, that at some point each of us dies. Most of us put that undeniable reality out of our minds as we go about our daily lives. We use euphemisms to describe the reality of death. We refer to the "time of our passing" or "when I am gone". In that way we are able to enjoy our time, the precious, fleeting moments that we have allotted to us. But for some of us it is not that easy to forget what waits for us. Some of us have a child that we know will not be able to live independently, to care for himself or herself as adults. That is the case for many parents of severely autistic children. Like many I wonder who will care for my autistic son when I am dead.
In New Brunswick, Canada at this time I do not have an answer to that question that haunts me with increasing frequency. The realities of life for autistic adults in need of residential care in New Brunswick are not pretty. We do have a group home system but the homes in question lack professional expertise and offer little in the way of life style opportunities for enjoyment, recreation and exercise. They are not generally equipped to deal with the more severely challenged autistic persons.
We have no institutional level facility designed to provide residential care and treatment of autistic adults in New Brunswick. This has become brutally clear in the past few years as we literally exported our autistic adults to the United States and other Canadian provinces. We are failing our autistic adults. In New Brunswick we do not have the institutional level facilities necessary to provide residential care and treatment, to provide expertise, security and life enjoyment to severely autistic adults.
My son, now 12 years old, with Autism Disorder and profound developmental delays, is well on his way to becoming one of those adults with autism for whom the Province of New Brunswick offers no suitable residential care. And I am now, as I type these words, one of those parents who can not answer the question - who will care for my son when I am dead?