Autism Treatments Through My Lifetime

When I was in college I did ABA therapy with children with autism. This was around 2003-2004. It was the only recommended therapy for children with autism. Looking back, I’d assumed I wasn’t that good with it because it was hard to get the kids to focus on it. But now, having a son with autism and seeing how ABA has failed with him and, through trial and error coming along Floortime techniques that have worked a lot better, I can easily see where a lot of the criticism about ABA therapy comes in.

ABA therapy had been seriously re-evaluated lately. Recent studies have failed to replicate the astounding results that preliminary studies had with it. And then there’s this article that details some harmful practices that arouse in conjunction with it. Things such as administering electric shocks. Now, the ABA therapy I was taught focused on ignoring undesirable behavior, and I would never go along with a treatment that used physical punishment (as a whole I feel punishment PERIOD is ineffective and avoid it as much as possible. Punishing a certain behavior does NOTHING to teach a child how to act instead). However, I did watch as parents would go to bizarre lengths to stop stimming behavior such as hand flapping (heavy, weighted vests, arm bands, etc) and wonder why.

From the stuff I’d read, I’d figured if a child was stimming, they were getting something from that behavior. Buddy doesn’t flap his arms, but he will get a bunch of blocks, put a blanket over them, and roll on them. I don’t stop him because I figure he needs the pressure and stimulation from the blocks to help his brain development. Turns out I was right on that, and what’s more, using Floortime techniques, you can help a stimming behavior become productive, no need to squash it!

Lately I’ve been reading about Floortime techniques, and while reading about them I realized that they were describing a lot of things that we were doing with Buddy that have helped. Floortime focuses on connecting with the child by joining them in what they are doing, and then once you have their attention, pushing them to new developmental skills. I’m not going to claim I had everything figured out, and I am desperate to work with a trained Floortime professional to figure out how to get better. For one thing, I’m not a terribly expressive person, and to do Floortime you need to be expressive around your child to get and maintain their interest. If Buddy was climbing all over me I would usually gently tell him, “no,” but after reading about Floortime, I’ve started doing an exagerrated, “NO!” and found that he actually responds to it. The other thing they’ve taught is that if you lose your child’s interest, work hard to establish it again. For instance, if I was getting some good back and forth with Buddy while playing with blocks and he started to tune out, I would usually tune out as well (I’m an introvert and need a lot of time to plan what I’m going to say). According to Floortime I need to get in front of him, establish that connection again, and keep the back and forth interactions going. It even helped me find something to do if I’m not sure what to say, which is describe what he’s doing until I think of my next move, which has been extremely helpful for me.

And they’ve been working. One thing that I always failed with with ABA was to make a connection with the child. With ABA, we expect the child to come to our level. With Floortime, we get to the child’s level first, and once we’re made that connection, we start pushing to the next level.

Going back to the kid flapping his arms, with Floortime, a parent would flap his arms with their kids, and once the child notices, might start to slow down the flapping and get the kid to match his movements. Or they might block his arms and prompt the child to say, “stop” or “more” to get some communication going.

It also dives nicely with what I’ve read about brain development and how children learn. Children don’t learn by route and flashcards, which ABA therapy relies on. Children learn by manipulating toys in the real world and playing.

I’m really excited about this, but frustrated. All of the programs I’m finding for autism are ABA based. And while I’ve gone through directories of people doing Floortime or similar approaches (all of whom are at least an hour away, and I live 10 minutes away from a large city!), none of them have been calling me back. Seriously, I called five different places in the last two weeks and they have not been getting back to me. I don’t know if they’re back logged or what, but it’s starting to aggravate me. Especially as I hate getting on the phone.

While I’ve been refining my interactions with Buddy using these techniques (and Andy is wonderful in this regard at learning as much as he can and putting it into place himself), I would love more direction on how to push him and how to maximize what I’m doing. I also really struggle with helping him interact with other children, likely because I had such a hard time of it myself growing up. I’ve had some success with talking to the kids we find on the playground and telling them he doesn’t talk much but likes to play. It usually works well, but if there’s a lot of kids and they are climbing deep into a play structure and Buddy goes running off to join them, well, it’s hard for me to reach them before he does.

Going back to raising a child with autism, I’m seeing more and more a divide between parents raising children with autism and adults with autism about what is best to do with children with autism. And I have to side with listening to adults with autism. One of the things that is hard about being a parent of a child with autism is we don’t know what they want, and the best way to find out is to listen to an adult who was in a similar position as a child.

And if they feel that a therapy wasn’t helpful or did more harm than good, we have to listen to that, even if it’s painful to realize we made a mistake. But their experiences going through that treatment are important for evaluating the benefits and costs of that treatment. That, and once they have a voice, it’s rather cruel to discount it.

In all, I guess what truly frustrates me is that I had delays and am possibly on the autism spectrum myself, and my parents really had to go at it alone and teach themselves how to get me the help I needed. In my case I didn’t fit into any nice little box. I sort of looked like I had autism, but there wasn’t enough impairment for it to be autism. And I sort of had dyslexia, but I could read and my problems were related more towards hearing comprehension. Now, it could be my hearing comprehension issues made talking so difficult and made me so indecisive over what to do in social situations that it looked like autism. Or it could be that if I was tested in these times as a child I would test as being autistic. However, schools and therapy programs like kids to fall in little boxes and to go from there, but since I didn’t, the school didn’t know what to do with me. And now about thirty years later, even with all of the research done, it still feels impossible to get my son the services that would best benefit him. This still feels like something this family is going into alone and doing largely self-taught.

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