Growing Up With Autism
Back in June 2013 I wrote about my son, who was on the verge of getting a diagnosis of being on the autism spectrum. At the time, I wanted to write about him before I got the diagnosis because I needed to remind myself that my son is not his diagnosis.
I was afraid that once I heard he was on the spectrum, I would think of him as “my autistic son” rather than what he is—a complicated, frustrating, but, at the same time, loveable and adorable boy.
My son got the diagnosis. He is autistic. It’s a struggle for me to say that for some reason. It’s much easier to say, “My son is on the spectrum” rather than to say, “He’s autistic.” Maybe it’s hard because if I say he’s “on the spectrum” I can distance the diagnosis. If I say, “he’s autistic,” I put a definitive label on him, and no one wants to be labeled or have their child labeled.
It’s complicated what a diagnosis can do to people. How has it affected me? Do I see him as a diagnosis? Not intentionally. Not consciously. But when he acts up, when he gets frustrated and aggressive, I find myself thinking, “he’s autistic,” which is shorthand for, “he can’t help it.” I label him. And yet it is more complicated than that. In a lot of ways he can’t help how he feels—can any of us? But there is more to it. Autism gifted him the struggle he has with reigning in his emotions and aggressive tendencies.
But like everyone else, he does have a choice in how he acts. When he was first diagnosed, we struggled to contain his aggressive outbursts, his kicking and hitting and biting and throwing. He didn’t seem to have the ability to stop himself from acting this way. But it has been five years since he has had the diagnosis. We have done a lot of intervention during this time. Most especially we have had an ABA therapist come and help him with everything from life skills to regulating his emotions. The therapist also taught us how to manage his behavior—how to change our own behavior to elicit the behavior we wanted from him.
Over the five years, we have worked on his aggression, and we have seen improvements, albeit slowly and little by little. Though he still gets extremely frustrated and acts out, we don’t see the aggression like we used to. He is less likely to throw things, hit things, kick, or spit on people like he used to.
How has the diagnosis affected him? My husband and I have not made it a secret from him that he is on the spectrum. But we don’t let that be an excuse for bad behavior. He knows that being on the spectrum makes it harder for him to do and act certain ways, and he will sometimes talk about being autistic, but, I hope and believe that we have talked about it in such a way that he doesn’t feel a stigma attached to it. He knows that it is hard for him to regulate his emotions.
For instance, school has always been a struggle for him. When he gets upset, he sometimes goes after someone simply because he is mad, even if that person has nothing to do with the incident. But after being in an intensive support program, then a behavior program, then the resource room at the public school (always distanced from the general education classroom where he got too anxious) he is finally in a specialized behavior program in a private school, with other kids who struggle with aggression. And this seems to be the right place for him. It’s a place where he is accepted even if he tantrums or has aggressive turns.
The other kids in the class support him and help him when he is upset. He supports and helps the other kids when they get upset. It’s a place where he is learning about his emotions, learning about why he feels so bad and how to control those emotions. The sweetest thing to me when we had his parent-teacher conference was that he was using his coping skills, such as blowing out the candles (blowing on each of his fingers) when he got upset.
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In one recent incident, after several weeks of exemplary behavior, he had a meltdown at school, a “rough morning” as the teachers said. He got upset when the rules changed, and because he was upset but didn’t know who to take it out on, he went after the new kid in the class and one of his teachers. But the teachers said though he started throwing punches and throwing over chairs, he was able to calm himself down and they could hear him talking to himself in an effort to calm himself down. The point of behavior therapy is not to eliminate the emotions, but to be able to manage the emotions so that you don’t act out in an aggressive manner.
And this is what the teachers saw my son trying to do. He did get consequences for his behavior, but the teachers focused on his ability to try to calm himself. They noted that though he acted out, they didn’t need to bring the other kids out of the room to keep them safe and that my son wanted to be part of the group and was trying hard to calm himself. They noted that this sort of episode could have lasted an hour or more in the past and that he could have escalated to such an extent that the public school would likely have called the police to restrain him, as they had done in the past. But at this school, he is learning coping skills and using them. They praised him for his successful efforts, and they told him each day starts out fresh. Yes, there are consequences, yes he is put on “stop,” but there are no grudges; everyone gets a fair shake the next day.
I guess this is all to say, that after five years of work, both his own effort and our efforts as parents, we see improvement in his behavior and, as his therapist says, the data is going in the right direction.
Will he be able to ever completely tame is aggressive tendencies? I don’t have a crystal ball, so I don’t know. But I do know that he is getting better at calming himself and the outbursts are not as bad as they used to be.
I still stay awake at night wondering what the future holds for him. I still worry about him and wonder if he is going to be independent when he is an adult. But I feel hopeful of the future. I see him acquiring the coping skills he needs to face adversity, be it a tough boss or people or situations that are adverse to him. And that is all I can do, all any of us can do for our kids regardless if they have a diagnosis or not, is to be hopeful.
This article was featured in Issue 86 – Working Toward a Healthy Life with ASD