People, especially children, will ask why can’ t Deane walk, why doesn’t he speak. Usually I say it is because his muscles aren’t as strong as other people’s. But that’s not really what they want to know.
The real “Why?” is why did it happen? What went wrong? One of the hardest things for most of us to reconcile is that modern science – with all it’s breakthroughs and inventions – doesn’t have the answers to a lot of questions.
The doctors couldn’t tell me why Deane has cerebral palsy. They could explain what happened – that his heart rate slowed down and didn’t get enough blood to his brain – but they couldn’t answer why. And that’s the question parents of disabled parents cry at their darkest times.
Often the only answer they can come with is it must be their faults. If only they had done something different, if only they hadn’t done something, if only they were better people. We know it is irrational, but when your child is not like all the other kids and may never be you begin to look for any explanation.
So I had a mixed reaction last week when the press was full of stories about a study that shows autism is linked to the age of the father at conception (http://www.nature.com/news/fathers-bequeath-more-mutations-as-they-age-1.11247). It showed that a father’s sperm has more genetic mutations the older they get. The study done in Iceland, showed that children with older fathers had a greater chance of developing autism, schizophrenia and other disorders related to genetic mutations.
I am a believer in genetic research and the mapping of the human genome. Three years ago, I signed the Stem Cell Charter supporting research into stem cells and discoveries that may come from their use.
But with that information comes some unintentional baggage. As more is known about genetic links and causes of different disabilities, the more parents will be able to answer the question “Why?” And if the answer is because of the genetic material I passed on to my child, the more guilt a parent will feel.
Although it may be a natural reaction, feeling guilty doesn’t help. The older fathers of autistic children will now wonder how much of their child’s condition is a result of mutations they may have passed on. Carrying that doubt and guilt will eventually take its toll psychologically. As importantly, it doesn’t help the child. Sometimes, not having the answers is better.
Brilliant. I had the same concerns when I saw that study re autism and older fathers come out. I’m hoping to do a related story around my own questioning of “why” my son’s genetic condition happened. I think the scary thing is that random things occur and they will always occur, but as humans we want a “cause.” I get concerned that all the research money goes into trying to find cause and cure, and not into helping people living with the conditions now. And sometimes knowing a cause doesn’t change anything.