I've been posting a lot of articles about autism lately, almost exclusively. Autism is a huge part of my life because of my son. I spend a lot of time trying to work out ways to better his position, plan his future, and prepare for the eventualities that come with a child with special needs.
Of course, as I go through the research and study, discussions and learning theories, I begin to wonder whether or not I'm allowing autism to consume my entire life. Am I?
This is a discussion that is primarily for my own sanity, but I thought I would share for all those parents, friends, family members, etc. that see autism in your personal world and wonder how it impacts that world.
Every day I live with autism and the results of a son who has difficulty communicating. Actively, I'm trying to help him learn to communicate as best he can. I try to work on his writing skills, spelling, and written vocabulary, and soon I'll be trying to help him with typing and playing an instrument. Ultimately, I want to have a son that is well able to express himself without assistance of other people, either through an assistive application on a personal, portable device or ideally through his own speech.
Passively, I'm accepting the situation for what it is: my son, whom I love very much, needs special attention. Regardless of what I do actively, this fact does not change. I could try to ignore it, but it does no good for my son. I could try to beat him into submission, but that does not work for autistic children, who are unable to recognize anger, frustration, or other social indicators.
Recently, I read an article by a grandparent to an advice column, concerned that her grandchild was taking over the family. The article then had a nice long discussion on behavior modification and better discipline within the home, but had no advice on how to accomplish these goals for a parent with an autistic child. Instead it made the autistic child the villain, willfully controlling his parent's lives.
Now, I don't know the full details of the family life the article was referring to, and I doubt either the grandparent or the advice columnist do either, and so I won't comment on their situation or their ideas of discipline. But it did awaken a sense of anger in me.
If your child is autistic, your life is going to seem very different than from other parents. Where cousins will start talking, your child does not. Where other parents start to complain about their child's talking back to them, telling them no, yelling, and such, all you can do is nod and feel a little hurt that your child doesn't speak to you.
You want to do anything you can for your child, and so you spend a lot of time doing research, helping with therapy, etc. You feel as though you are in a race against time, trying to get your child caught up as quickly as possible to other children for their benefit. You don't want them to grow up being teased, bullied, and shunned because of who they are. You want them to have an equal opportunity in this world.
So is that obsessing over autism? Perhaps, but do you obsess over your children? Do you want them to be as educated as possible when they start school? Do you read to them, help them learn to write, work with their speech, and teach them useful skills? Of course you do, because you love your child.
Now, just imagine that your child can't mimic what you do, and doesn't imitate. You have to go through the same steps hundreds of times, so that they learn the routine. This takes time, a lot more time than just showing them a couple of times and have them get it.
Now, imagine your child is easily distracted by any combination of action and sound, and doesn't stay interested unless there is a combination of action and sound. How much more difficult would that be? Ask any parent of an autistic child, and they will tell you.
Anyway, that is me venting. Next time you start to complain about how hard it is to teach your "normal" child something to a parent with an autistic child, please don't get offended when they just nod and smile. It's not that they don't care, it's just that they have dealt with far more than you can imagine already, and find your complaints a bit less compelling than you may have hoped.