Changing the child vs. helping the child

I often post things about autism acceptance on my Facebook wall. Recently, a friend sent me this message, and with her permission I thought I’d share it and my answer:

Hey Tasia, I really appreciate your posts about autism. They’ve changed my way of looking at autism. I think I’m more accepting and am able to think of autistic people more as “different” rather than “disabled.”

But I have trouble understanding something and I thought maybe you’d help me. I’m sure this is a common question. What about autistic people who are so severely affected that they can’t really communicate with other people? I think that if I had a child like that, I’d do anything I could to help bridge the gap, and part of that would definitely be some kind of communication therapy. Is that “changing” the child or “helping” the child?

It is a common question. 🙂 I’ll take your example of a child who doesn’t seem to be able to communicate with others. Conventional thinking says the child should learn to speak so he can communicate. Parents and therapists tell children “use your words” and dismiss the child’s attempts at other forms of communication. They believe that “behavior is not communication.”

In this mindset, the use of iPads and other devices to facilitate nonverbal communication can actually be controversial–some see it as a crutch that will prevent the child from ever learning to speak; some see it as a concession, an acknowledgment that the child has “failed” to learn speech so they must resort to this.

The acceptance mindset says that while you encourage the child to communicate, you also 1) facilitate and celebrate communication in whatever form it occurs, and 2) actively try to learn the child’s ways of communication.

Through autistic people, I have learned that there are ways to communicate without words. They do it among themselves easily–it’s almost eerie to watch Nick and Karla sometimes as they seem to send their thoughts to each other without saying a word, and without the kind of body language that I understand (but I am learning!).

Acceptance is about helping the child without treating him as though he is inadequate as he is, without making him think his way is wrong, or that other people are somehow better than him and he should try to be like them. You provide him with tools and teach him how to use them within the boundaries of his abilities.

Also, I think  it’s fine to think of autism as a disability. The fact is, there are some things that Nick can’t do, and he will need to advocate for accommodations, now at school, later in the workplace, always among the people in his life. Ultimately, I would love to see autism known simply as a difference in neurology, just one of many ways of being human. But right now, societal assumptions of “normal” ability put him outside that range.

The different with autism compared to other disabilities is that autism is commonly seen as something that can be defeated. Something that, if they just work hard enough, they can overcome. And many people spend years and years trying to overcome something that is part of who they are, leaving them feeling hopeless and inadequate.

A lot of people reject the acceptance movement because they think we are saying they should do nothing to help their kids live better lives (and note that it’s almost always parents saying this, not autistic people themselves). When your nine-year-old child is nonverbal, doesn’t feed himself, has not toilet trained, perhaps self-injures… of course you want to help your child to learn as many life skills and safe coping skills as possible. But how you do it matters. If you can start with acceptance of your child for the unique human being he is, and become OK with the possibility that he will always have the same needs he does now, then you can move on respectfully and patiently to helping him learn new skills on his own timetable, for his own sake and not anyone else’s.

Something I keep in mind when considering therapies and the like: do I want this for my child, or do I want this for others?

Life skills benefit the child and can be taught without any implication that the child is “lesser” for not having them. Social skills are another story and that’s where acceptance comes more into play.

Example: autistic kids are often not allowed to stim. Stimming (flapping, rocking, pacing, fidgeting) is an important tool for self-regulation. Stopping his stims does not benefit the child in any way; in fact, it hurts him and is counter-productive. (Self-injurious stims are another matter, but those can be redirected instead of suppressed.) But conventional thinking says that stimming is bad so they try to make it go away. Why is it bad? Because it makes other people uncomfortable.

This is what most social therapies are about: teaching the autistic child to behave in such a way that makes everyone else feel comfortable. Teaching him to do and say and even think the “right” things. (Yes, social training does actually tell them what they should be thinking.) This is the sort of thing that the acceptance movement protests.

Autism has its own culture and assuming positive intent is central to it. While my autistic friends are direct and blunt, and they really can’t be any other way, they are generally not hurtful. It’s my responsibility to not read emotion into their words that isn’t there.

Acceptance means that I take them as they are, rather than insisting that they change the way they talk to me. It means I don’t tell them to stop flapping because it’s distracting; instead I find my own ways to stay focused (and it works great that in autistic culture, I can look away without being called rude!). It means I understand that they are working hard every day to process the world and I don’t ask them to work even harder just to make me feel comfortable. Actually, as long as I am accepting, I feel perfectly comfortable.

Of course we all want to maximize our kids’ potential. When we work toward that goal with acceptance, we see autism as simply a part of who they are, not something to be trained out of them.

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