Tuesday, May 31, 2016

What Therapy Can and Can't Do

Ethan, almost 3, with one of his awesome therapists

The other day I was organizing some files I'd been meaning to tidy up for, let's just say it, years, and I came across a bunch of sheets from the days when Ethan had therapy at home. This seems like eons ago, but there was a period of about 12 months when he had visits from an ABA (applied behavior analysis, an autism-specific therapy) therapist, speech therapist, and occupational therapist here four days a week (and the other day we went to outside OT and sometimes speech).

After every one of these home visits the therapist filled out a sheet summarizing what had happened in the session and including tips for carrying over the lessons learned in everyday life that week. As you can imagine, it's a big stack of papers, but I've hesitated to get rid of them because they so specifically document where Ethan was between the ages of two and three (and how far he's come) as well of all of the milestones, struggles, and strategies we went through that I for the most part would have forgotten.

As I read through some of the papers I came across issues I'd forgotten Ethan dealt with and challenges he has to this day. I was reminded of two things:

Therapy for a child with autism can be very, very beneficial.

Therapy for a child with autism will not remove the core issues that make the child a child with autism.

Speech therapy will, most likely (thankfully!) help your child to speak but won't necessarily improve the desire to communicate.

Occupational therapy may help your child to have (for example) more precise fine motor skills but doesn't change their low muscle tone that caused the lag in fine motor skills. This was a really difficult one for me to understand because when you hear "low muscle tone" you think it's like going to a gym, and therapy sessions are somehow improving tone. But low muscle tone doesn't involve a muscle responding to a stretch, but muscles that are slow contract in response to a stimulus and don't maintain the contraction as long. That's neurological, and it's not something you just "stamp out" in some therapy sessions.

ABA therapy most certainly is not going to make your child "less autistic." Really, the most classic form is essentially teaching your child to respond in a certain way due to repetition. That's actually one of the problems I have with it -- for some people. I do think it can be helpful in some cases. But there is nothing intrinsic about it. There is nothing explaining "why" a child might want to respond in that way.

Even play therapy: you can go about modeling a certain play situation for a child with autism. But if it's an area where they really struggle, most likely when they sit down they will imitate the play scenario you modeled (i.e. playing with a farm and animals or dolls), but still not really know how to play.

Sometimes for kids with milder forms of autism I do believe therapy can serve as sort of a bridge that helps cover gaps they had in skills. It's the little push they need, and as they grow and learn and are surrounded more and more by other typical kids, they pick up more and more. Sometimes the brain does "rewire" to some extent.

Other times therapy may not transform a child but may play a very important role in reducing certain behaviors. Sometimes it's providing the structure and order that autistic people often crave.

I'm a huge fan of therapy like the "Floortime" model -- where you get down on the floor and join in with whatever your child is doing, because the point is to engage the child and interact with the child and most of all encourage them to want to interact with you. Floortime I think comes the closest to addressing that most prickly issue of motivation.

One of Ethan's therapists used to say the first thing they like to teach in speech therapy is that "my words get me things." Once children understand that, they become infinitely more motivated to speak. Frustratingly, though, motivation comes from within -- and aside from that very basic desire every kid has to want a cookie and some milk, in most cases it's not something therapy can really create.

When it comes to autism and play/interaction with others, there is a point when therapy can only do so much. There is no real way to motivate your child to want to join in and play with other kids. No amount of therapy, really, can make that happen. This is the point that can be really difficult for parents who are new to this. It feels like it should be part of the package. It's something not really explained when you start out, or maybe you don't really take it in. The therapy is there to help...to alleviate behavior problems, to encourage your child to communicate, to give your child tools to get by in school and in life...but it's not going to change your child into someone he is not.

That's not to say that amazing things don't happen. Ethan this year suddenly decided he wanted to play with kids on the playground and kids next door. I have no idea why. There was nothing we did to make it happen. I'm thankful for it, but I can't explain it. It's just part of the amazing mystery that autism is.

So I will say -- therapy can be wonderful. Therapy won't solve everything. Some things may not change. Other things take time. With autism, you truly just never know: which can be a frightening thought, or a glorious one...or a little bit of both.

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