Am I Empowering My Autistic Son to Thrive—Or Stifling Him?

Autism parents wonder how much to change a child's behaviors—or to let him be.

Posted Dec 13, 2019

How much should you help your child fit in with the real world if, in doing so, you are changing things about him that may be essential to his happiness? What if he has fairly severe autism, intellectual struggles, or communication issues? What if he is an adult?

Some in the neurodiversity community would answer immediately: "You don't change him. You have no right to, and the psychological cost is too great." As a firm believer in neurodiversity, I listen to that, and I take it very seriously. To give Nat pain—any pain at all—feels like the worst thing I could ever do. It's hell-worthy.

But—and in this very gray life of ours, there is a but—don't I have to weigh one form of struggle against another? If Nat is so impaired that he must have 24/7 supervision, then right away there is a terrible risk for him in the world. And I should know, for Nat has had broken ribs twice; I probably will never know how it happened, but what I do know is that it happened when he wasn't with me, under my eagle eye. And I'm the kind of parent who strives to be a very familiar face at all of Nat's programs, who gives gifts to his staff, who builds relationships with anyone he deals with: van drivers, support staff, service provider CEOs, and the state agencies. Yet still, it happened. And it is far too common for people with developmental disabilities, like Nat.

There are other, more subtle features we've worked on with Nat—certain behaviors and communication patterns he has struggled with—to change in order to function in the world. We have had to resort to certain serious medications to help him not be aggressive or self-injurious. This, after having him undergo extremely thorough medical examinations and tests for physical reasons for those behaviors. That cannot have been easy for him. But it was all necessary. One cannot sustain a life of aggression and self-injury. It is dangerous on so many levels.

Okay, says the neurodiversity community, but where do you draw the line? How do you define self-injury and "undesirable" behaviors? What if he taps his head a lot—kind of hard, but not brain-damaging hard—or chews the skin off his fingers, or pulls out his hair regularly?

Parents have to weigh one difficult activity against squelching what may actually be calming to him, or even pleasurable. We always have to be scrupulous in understanding which purpose it has, what level of seriousness the behavior. We choose our battles. I cannot get an accurate answer from Nat, so I do this by observing Nat closely to determine how important the behavior is to him, and what is its function.

Some pursuits are a matter of social safety, like learning what is private and what is not. In our family, we decided to be fairly open about acceptable behavior when all three of my sons hit puberty. My more subtle attempts to "alter" Nat (or—as I see it—to add value to his life) have to do with enhancing his social and inner life. I continue to look for satisfying pursuits for him like Special Olympics or MUSE (his rock band). When I have the energy, I work on Facebook with him, keeping up his relationships with distant family and friends. When we feel like it, we ride bikes together. I continue to (gently and respectfully) urge him to speak up in restaurants, to answer people, to ask for things himself. Again, I observe his responses and seek out activities that will make him happy.

Is this discussion offensive? Probably to some readers. But the choice I have made is that this very personal discussion has to be that public. As a leading autism advocate, I am hoping to help others. But with everything I write about Nat—or attempt to change in him—I am weighing his personal rights with the public good. "What right do you have to do that?" some may ask. "What if he reads this?" Well, good people, if he could do that I would not be here writing this.

I wish I had the liberty to just not think about Nat this often. But it is my job as his mother to be connected to his way of being for the rest of my life. That is what I signed up for with motherhood. "Oh, you've got to let go," some will undoubtedly say. Actually, no, I can't. Only to some degree. I can find him a wonderful group home and an equally fulfilling day program. I can continue my hawk-like diligence and oversee his safety and happiness.

But the independence Nat gets while I'm still alive is the freedom to spend days and nights away from me. He's free to have behaviors that help him feel calm—it's my problem, after all, to worry about being stared at. He doesn't notice or care. But he is not free to engage in actions that would hurt him or others, or that would result in someone yelling at him.

I don't want to change Nat, not at all. He's wonderful exactly how he is. But it is my ultimate and very grave responsibility to continue to give him the skills and the self-control that will allow him to be safe and to grow. It's true with any child. But with an adult disabled child, it is lifelong. And that is not ableist of me; on the contrary, it is the most empowering thing I can do for him.