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Oct 15 2013

I Missed the Autism Early Intervention Boat & That Might Have Been a Good Thing

By at 4:01 pm

autism definition in dictionary

It’s been nearly six years since my daughter was diagnosed with autism. Like many other parents who hear their children have life-long challenges ahead of them, my husband and I went through the seven stages of grief, but I also Googled. Furiously.

While I found no shortage of information, what I found by and large more than anything was that “early intervention” was key to improving the symptoms of autism (personally, I hate calling them behaviors because that makes it sound like it is something which can be controlled). Most websites I consulted say a version of the same thing:

“Early intervention is your child’s best hope for the future.” Getting critical therapy before the ages of 4 or 5 was key to helping them improve the core behavioral symptoms of autism (there’s that word again). I signed up for loads of parental forums on the topic and heard the word I most wanted to hear: cure. Early intervention, many parents said, could cure my daughter of autism.

My daughter had just turned 5 when she was diagnosed, so not only was she on the autism spectrum, but we had missed the cutoff age for her best hope for the future.

We were screwed.

On top of all that, we live in Europe, where the approach toward treating autism is different than in the US. They had barely even heard of early intervention or the other autism-therapy buzzwords: ABA, Floortime, and OT were not practiced with any regularity here. We were told our daughter needed therapy, but that instead of saturating her in a world of one-therapy-after-another, we should be careful not to overload her at such a young age.

I came armed with buzzwords and Internet articles and research. Our social worker, who was there to help us, told us to slow down and take a breath. Yes, therapy is important, but what was just as important was letting our daughter be herself. While therapy could help our daughter immensely, she would always have autism and would probably never be completely free of its symptoms. What was most important, she said, was that our daughter felt accepted and that we focus our energies on supporting who she is and encouraging her to take those scary steps outside of her own world.

Nearly six years onward, I am so grateful for the advice we received, and even more grateful that we took it. Her therapeutic regimen has not been based on overloading her with every kind of therapy under the sun. Just the opposite, actually. She gets therapy during school hours but until this past year, nothing after school. Her team of therapists, psychologists, and social workers stressed that it was important that we accept our daughter for who she is and not overload her with therapy, which is often counter productive. She’s young, they said, and her brain can only handle so much. During school she is being asked to fight her own natural instincts all day long, and that’s hard work. Home should be a place where she is able to relax and be herself, to get away from all that re-channeling of her energies. We should be sure to set clear limits for her, but beyond that, home should be the place where she goes to decompress, to re-energize herself.

We have followed that advice and our daughter has made steady progress over the years. Yes, it is measured in baby steps, but six years of baby steps actually adds up. And truth be told, I have never seen one autistic child who has had early intervention be able to live without additional support at school or at home. I have never seen, despite the claims of some parents or celebrities, someone be cured of autism. What I have seen much more often are some children who are so overloaded with therapy that they withdraw even more into their autism, who have very high levels of anxiety, who are not happy, who have no confidence in themselves.

At some point the line between helping through therapy and giving a child the underlying message that they are not great as they are becomes very hard to recognize. While I certainly would not go so far as to say what has worked for our child is true for every child with autism, I will say that this approach has worked for us. I know my daughter is autistic and I also realize she will never not be autistic, that no amount of therapy will completely take away her challenges. I know my daughter needs to know she is wonderful, as she is, and while it is my role as her mom to help guide her, a big part of that guidance means accepting her just as she is. Because if I don’t do it, how can I expect her to?

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