Oops! The Learning Curve for Parents of Children With Autism

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I wrote my ebook, “A Parents’ Guide to Early Autism Intervention,” to tell the story of what we did with our son when he first started his autism journey. Among the many topics, I discuss the overall “parent learning curve” involved with an autism diagnosis. 

One of the experiences I wrote about was when our 14-month-old received his first autism-related service: floor time. A floor time therapist came to our house twice a week. When she first arrived, we talked with her extensively about our child. The second visit, she explained to us the goals she had for our child, such as establishing eye contact and teaching turn-taking.

One big goal she had in mind was the understanding that she eventually wanted to work one-on-one with our son. This meant we would have to begin to leave the room so the two of them could work together without parent involvement.

This ended up being a pretty stressful and prolonged process. My child was so young and still very clingy, especially to me. It took about two weeks for me to leave for five minutes. Then I stretched the time to ten minutes, then to fifteen. Eventually, the therapist came to our home and worked solo with our child.

So imagine my surprise, when in the course of writing my ebook, a professional in the field of autism informed me that parents were NOT meant to leave during floor-time. Quite the opposite: DIR/floor time is specifically structured to involve the parents! She said that this was not the first time she had heard of this mistake, and she only pointed it out in order to keep the bad information from being passed on further. I thanked her and immediately amended my ebook (being an ebook, you can do that!).

But I was puzzled. What happened here? When we sat down to discuss it, my husband and I came to the conclusion that we had been taught the wrong definition of floor time, probably as the result of a disconnect in communication between the state system, the service provider and the therapist. 

Thus, we were given this information, and spent almost a year and a half leaving the room during the therapist’s visits instead of engaging with our son… which was wrong!

My husband and I were young pups in the world of autism – we were ripe to believe pretty much anything a person who came into our home to help our son was telling us. This person was friendly, punctual, cooperative, patient, and seemed to be a good fit for our son. We were eager for information and ready to listen to someone who worked so hard to help our son. She would sit on the floor with him, encourage him, reward him, make him smile, and really created a pleasant atmosphere and experience. Of course we believed her! Why wouldn’t we?

When you’re first starting out in an autism journey, that learning curve is enormous. It is filled with tons and tons of information. Your head hurts after a three hour IEP or after a 3-day autism conference, or after you finish reading your first autism book. It is simply overwhelming.

And, most of it is a part of your learning experience. I read the Greenspan book around this time, but I certainly missed the information about DIR/floor time therapy being geared with the parents remaining in the room! It was there, I just missed it and we didn’t make the connection. Then, the wrong information happened and we learned it that way. Which was wrong. 

I cannot change the past. It happened exactly that way and, according to my research, this mistake happens a lot! Instead of trying to change the past, what I can do is thank that director for correcting me, and write about the mistake to make sure it doesn’t happen to anyone else. Now, I feel empowered by this mistake. Because I want you to learn it the right way the first time!

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