I felt completely different from the other kids. We moved a lot when I was young, so I was in a new school every year. Atlanta, Knoxville, Meridian, Anniston, Birmingham and Pensacola. That was just through the seventh grade.
I was always the new kid in class. I was always the new “smartest kid in class,” too. But even beyond that, I simply felt different from the others. My thinking was different. I wanted different things. My play was different. I felt like an alien.
But on the outside, I complied with every norm of my childhood culture. I looked and acted like the others. I obeyed their norms. I learned to fit. I didn’t want to, but I learned to play the part that was expected of me. I was forced to learn.
I’ve been thinking about this lately because I’ve been learning about the experiences of high-functioning autistic children and their families. Until recently, I’d never thought about the challenges faced by such families, but now that I’m thinking through the issues involved, I feel a lot of empathy for children in such situations.
As I’ve learned about the therapy considered the “gold standard” for autistic children — “applied behavior analysis” — I’m comparing it to what I experienced as a child. I’m finding a lot of autistic people who say this therapy is abusive. And I don’t know what to think.
How far is it reasonable to go to mold and manipulate a child to fit into his or her society? Is it abusive and immoral to force someone whose nature is fundamentally different from ours to conform to our expectations?
I don’t have an answer to these questions. I feel as though I’ve waded into quicksand — where good people on both sides of an argument feel strongly that they have right on their side.
The people in favor of applied behavior analysis (ABA) say it’s the best tool to get children to be more like non-autistic children — so that they can function in mainstream society. They say that autistic children — especially those high-functioning children who mostly resemble their peers — have to be trained to emulate the behavior that’s expected of them.
Autistic people who say this therapy is abuse point to the history of the therapy, when its pioneers used harsh punishment to gain children’s compliance with behavior which seemed alien to them. And even though these negative punishments aren’t typically used in ABA today, they say that it’s still a manipulative attempt to force children to be something which they’re not.
Essentially, autistic people say that what they are is what is normal to them. They ask why they should be required to pretend to be something other than what they are. The ABA therapy seems to be about achieving outward behavior that emulates the behavior of mainstream children — but what is the cost to the child if this is sending him or her the message that he or she is fundamentally broken?
I constantly got the message when I was a child that I couldn’t be “good enough” to satisfy a harsh and demanding father. His methods worked. He turned his three children into completely compliant little robots who always acted exactly the way he wanted, especially around others. This allowed him to feel good about himself. But I’ve spent years coming to terms with the damage this did to me.
Maybe it’s not reasonable to compare what I went through to what autistic children go through with ABA treatment. I’m honestly not sure. But it feels similar enough in spirit that I can put myself into the mind of a young autistic child — and I wonder about the long-term effects of being molded to be something which feels alien to the child.
The people who oppose the therapy seem to ignore two very pragmatic considerations, though.
First, if an autistic child engages in some sort of behavior that is off-putting to the rest of the world — something which would cause him or her to be rejected by the mainstream in the future — is it kind or moral to allow that behavior to continue? If such behavior will make it difficult for the growing child to have friends and eventually to hold jobs, is it the more loving thing to take serious steps to change the behavior?
Second, the reality is that parents have to find ways that they can reasonably live with their growing children for 20 years or more. Some behavior which might be “authentic” to the child might make life a nightmare for a parent. How far is it reasonable to expect an autistic child to become something he or she is not — in order to allow the parent to have a sane and peaceful life?
When I was young, I was sure that I understood the best ways to raise and train children. I would use the same methods my father used, because I thought his methods had done such a good job with me. It took me a long time to realize this wasn’t the case — that I had actually been left damaged in ways that I struggled to understand.
But this issue takes that question to another level. If a child’s fundamental nature is completely different on the inside — different from what you or I will ever experience — what is most likely to allow that child to have a healthy and productive future? And what therapy will allow the best balance — to meet the child’s needs on his or her own terms, but also allow for peace and tranquility in a home?
I used to think I had all the answers — or at least most of them — but I understand now that life is far more complicated than I ever thought. Even for people who have the best of intentions.
Until recently, I had no thoughts about any of these questions related to autism and how it should be treated. Now, I just realize how much I still have to learn.
I now have tremendous empathy for autistic children, especially for the high-functioning child who could be mistaken for any other child much of the time. That child has a long path ahead — of learning how to fit into a world which operates on completely different thinking than he or she experiences.
And I now have great empathy for the parents who have to deal with this in their children. It’s one thing for therapists and academics and activists to debate this therapy (and call each other nasty names at times). But a loving parent faces real, difficult questions that can change everything for his or her child. It can require difficult choices.
It’s not so clear and obvious what a loving parent should do for a child with such needs. There appear to be no perfect solutions, but that loving mother or father has no choice but to make hard choices anyway — and hope he or she is doing the right thing.
That has to be heart-rending. It has to be scary. Those parents deserve love and support as they make these difficult choices and try to shepherd their children through a very complicated life.