Sunday, March 09, 2008

Ultimate Autism Reality - Who Will Care For My Autistic Son When I Am Dead?

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?


Blogger Charles LeBlanc said...

Very touching blog!

I didn't you had in ya???


Brett said...


I share your concerns. My son will be 17 this summer, so the time is nearly at hand. (In fact, I was reviewing some financial arrangements over the weekend.)

I have no idea where it is all going to end up, but I can tell you that if you had asked me 5 years ago, when Z was 12, I was a bit more concerned. Not to say I'm not concerned now, but an amazing amount of growth can happen in 5 years (or more).

Over the years I've written a few times on this question, such as here, here, and here (some excellent comments on this one, as well). I hope they are of some use.

Anonymous said...

I have a brother who is schitzophrenic. My parents worried what would become of him after they died. They prayed much and put their faith in God. I wish they could see him today as he is functioning quite well on his own. He has a small disability pension provided by the gov. He has not been able to hold a job but works at little jobs once a week for a gov funded group.

Things change, situations change and people change and none of us can see into the future.

Continue to do your best and explore all possibilities. You can not do more than that.

Anonymous said...

With a son that is 42, here is my response to your question.

While I wish I could be more positive, I hope it helps.

Ettina said...

I worry about that with myself, too.
Your son is low-functioning, so though he's likely to get poor quality care from the public disability care system, it's pretty likely they'll all agree he needs care.
I'm high functioning. If left with no special care, I'd do much better than Conor, but as my abilities are now I'd still do very poorly. I read accounts of autistics starving because they have troucle knowing they're hungry, having their homes condemned because they find it very difficult to clean them, losing or not getting jobs because they are either discriminated against, can't do the job properly or can't cope with a job when they aren't looking after themselves properly, etc, and I see what could be my future. And I'm unlikely to get help, because I speak well, have an IQ in the 130s and am not physically disabled (apart from possible mild hypermobility). No one seems to recognize that a smart person can have a developmental disability impairing their self-care.
Of course, I'm only 18 and may learn enough to handle independant living by the time my parents die. Luckily, they're fine with me living with them as long as needed before then.

Patricia said...

I don't think parents of so-called "normal" children realize the worry this causes us. When we hear of the reported abuse of special needs adults and children, you wonder the extent of unreported abuse. In the Edmonton area, Family Services and also the Autism society start the parents thinking about this issue when the child turns 15. They found that many parents had no idea that when their child turned legal age, they no longer had the authority to make legal/financial decisions on behalf of their child - if the child was "aware" enough to take control of his/her own affairs. The two agencies alert parents to this new concern when the child is 15 because it can take a few years for guardianship to go through the courts, if that is the necessary action.

It is truly discouraging that there is little in the way for adult special needs. It will only be through collective efforts from parents and concerned individuals that any changes will occur. It is a long and tiring uphill battle.