Teen Autism

A friend of mine recently suggested that I identify and write about the three biggest areas of concern for parents of autistic children. I quickly determined my three, and they are probably universal.

1) Safety

Our children’s safety is a huge life-long concern. We worry because they can have extreme responses to sensory issues, like darting into the street because a bug flew in their face or screaming and writhing on the floor in a public restroom because someone started the air hand-dryer. Our children are also vulnerable to being coerced into doing things that are dangerous or illegal because they are trusting and many of them want to have friends. We worry if our child leaves the house when unsupervised; some are runners who like to “escape.” We worry about our children injuring themselves or others when they lash out due to frustration or fear. We worry about how people out in the community will respond to them. Safety is definitely a primary concern, and parents must be vigilant.  

2) Education

We parents are equally concerned about our autistic children’s ongoing education. We want to make sure that they are in cognitive-appropriate programs and that they have access to the various types of therapy that they need so that they can progress to their optimal level of development and functioning. If our children are mainstreamed, we constantly have to check in to make sure that their needs are being met, that they are not being bullied, and that they aren’t just being sent to the library to watch videos. Our children’s academic and social development greatly affects their potential, and we always want them to be happy, learning, and valued. This involves a great deal of parent advocacy.

3) Future

It may only be an occasional thought for parents of younger autistic children (mostly because we were too busy trying to deal with the present), but once our children hit adolescence, it becomes a major concern. What does the future hold for my child? How will he be in adulthood? What happens when I’m not around to care for him? These are all questions that entered my mind upon Nigel’s initial diagnosis, and infrequently in the ensuing years. About a year or so ago I started to really wonder about his future, to think about it on a regular basis. I have concerns about how independent he will be, how he will navigate the community without my intervention, how he will interact with people. Most importantly, I want him to feel fulfilled with his life, to have a job that he enjoys and people around him who appreciate him. I want him to be happy. Of course, that is what all parents want for their children. But with autism in the picture, parents so often have to orchestrate the outcome. Our concerns about our child’s future become our champion cause.

Over the weekend, I did some looking around online at autism sites written by “auties.” (I’m still getting used to that word, which is why I put it in quotations. It took me eight years to come to terms with using the word “autistic,” so “autie” will sound different to me for a while.) I was sad to see that many of them are quite bitter. I can’t say that I blame them, because with the harassment and ignorance that Nigel has dealt with, I’m sure there are plenty of other auties who have experienced the same treatment. And as they head into adulthood, that’s a lot of accumulated years of negative exchanges.   

I found a bumper sticker that says: “Cure Neurotypicals now!” And in smaller print below: “Offended? Good. Now you know how we feel.” Meant to be funny, I presume, with an ounce (at least) of seriousness. But some of the web sites I viewed over the weekend seemed just plain angry. I want to tell the authors something, with all my heart.

 I’m sorry for how you’ve been treated. You have every right to be angry. But holding on to that anger will only make you feel worse. Remaining angry will not alleviate the anger. Remaining angry will not punish the people who hurt you. Remaining angry will only hurt you. Please, for your emotional well-being, channel your anger into something positive, like creating an online support group for others who have experienced the same thing. You will know you are not alone, and you’ll feel at least a little better.

Nigel gets angry about bullies. Most likely, as he gets older he will experience more bullying and more ignorance. I don’t like thinking about what he has gone through, what he will continue to face, how things will be for him in high school, possibly college, a future workplace, and the general community. I hope that I’ve given him a strong enough base of love and self-worth that he can successfully let go of his anger and not allow it to consume him.

I don’t want Nigel to feel bitter when he’s an adult. I want him to feel cherished, appreciated for who he is, and important. I want him to feel loved.

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in what I call The Autism Club. I had read and heard about autism, but I had no idea what it was like until I came to live with it. I couldn’t believe it was happening to me. I never realized how it would affect me. It will continue to determine the rest of my life.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects every fiber of my being. But I have to keep reminding myself that there are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.