Autism research & my family’s journey

Earlier this year I put up a post about research that pointed to a possible genetic link to identify autism spectrum disorder (ASD) in families. Unfortunately, however, that link is no longer available. In any event, I found the information to be very good news because so many families suffer for so many years before their child or children are correctly diagnosed. There are also relevant links here, here and here, as well as Medical News Today where you can access a wide range of research studies.

Although there is no doubt that living with children with ASD is a 24/7 challenge, it is a challenge only those who go through it can truly understand. What I was going to do is tell a story about how a young man can grow up with Attention Deficit Hyperactivity Disorder (ADHD), learning disabilities (LD) and autism, and still find his way in the world — my son’s story.

He was born in 1965. I knew right away that something was very wrong. My first child, a daughter, who had been adopted, was quite normal. So, I knew the difference. While still in the hospital my new son was unable to suck, which meant he had to be fed with a tiny spoon.

He also didn’t sleep and cried and wiggled constantly. In fact, he fidgeted so much I could not hug him or hold him. In fact, from the time he came home from the hospital he hated to be touched. When I would try to hold him, or snuggle with him, he would pull away and stretch out his body and go stiff. So, the only way I could bond with him was to put him down and rock him in his carriage.

I clearly remember that in the early days I got very little or no sleep and I can still visualize the night I spent sitting on the floor and leaning against the crib continually putting the soother back in his mouth, hoping he would learn how to suck. After leaning there for twelve hours, he finally kept it in his mouth — which told me that with repetition and practice he could learn!

Over the years, it was extremely difficult. But, somewhere along the way, when he was about six years old, we met a pediatrician and a psychologist who helped, who told us it was probably a combination of genetic and brain damage for the difficult birth.

Thankfully, while it was to be a very long haul, it was those professionals who were able to point my husband and I in a direction where our son eventually received the help he needed — help that was difficult at the time but necessary for the long run.

For example, when he was thirteen, we knew we had to do something significant. His behaviour was completely out of control and we knew he would soon either be dead or in prison. Given that the only behaviour modification therapy available in the early to late 1980’s was in a residential setting, we had to send him away for that treatment — treatment that lasted a full three years.

How many parents today have to give up their children in order to get them help? It was a very difficult time for all us. My son felt rejected, which is understandable and visiting him at the facility was very difficult when we had to leave.  But, we had to visit because, since his therapy was based on a “points” system, there were many times he was not allowed to come home for the weekend for three months at a time.

But, gradually he started to change. Even he began to notice that he was able to manage normal social situations.  The good news is that once he was home for good, he was able to graduate with a high school diploma – albeit from a modified basic program — and he felt really good about that. 

IBI therapy is now available in the community and parents are lobbying the Ontario government to provide it beyond age six in the school system. If you can make it possible for a child with ASD not to have to be sent away from home, it is worth every penny it costs. The bottom line is that we all benefit when children and adults with ASD become fully functioning members of our society.

My son is one of those fully functioning members.  He has been married now for thirteen years. His spouse is a fine woman who has developmental and physical disabilities and he feels his “career” is to take care of her — which he does.  And, it really is his “job.” Just imagine how much it would cost the health care system if his wife was “in care.” They still need near daily supervision and a trustee to help them with money management, but the bottom line is that he has turned out to be a fine human being, kind and compassionate. That to me is success.

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