Tuesday, May 18, 2010

Maybe it's just Sensory Integration... I hope

Here I am again, I can't sleep and my mind is wandering all over. About two weeks ago I ran across a great website called http://www.autisticlike.com/. It's a story of a family whose son was diagnosed around the age of two with autism. They started ABA therapy and a few months later had a gut feeling that it was something else, not as much autism but something they couldn't describe. This is my life... I've had two medical doctors give JD a diagnosis of autism, however I'm still not quite sure. Some days I totally see it, but other days I think things just don't quite "fit" into an autism diagnosis. Well their story ends with finding out that their son has Sensory Integration Disorder. They created a DVD about their story which is really great and I recommend highly.
Sensory Integration (SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Integration Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. It makes it difficult to process and act upon information received through the senses, which results in challenges in performing countless everyday tasks. All kids with autism have sensory integration disorder but NOT all kids with sensory integration disorder have autism. Confusing right?

JD had two evaluations today - one for OT and one for Speech. The OT eval took about an hour and went well, minus the tantrums and crying at some points. Then we met his new speech therapist Holly. We took JD into the room and she watched as we interacted with him and let him play a bit. Also after 20 minutes she said to us, "I don't think it's autism. I only see sensory integration issues." Let me tell you how much I feel like a ping-pong ball going back and forth with doctors and therapists. Our initial diagnosis of autism was in March, so we started ABA (behavioral therapy). Then I had a gut feeling something wasn't right, after doing research on my own I saw more sensory issues than autistic issues so in April I took him out of ABA and started looking into other options. Then last week another doctor evaluated him and said autism, and then today a therapist said it's sensory integration disorder. AHHHHH! Well I'm going to do two things...

First - I'm following my gut because if I've learned anything in life it's that your gut is usually dead-on. I believe JD has sensory integration disorder and from this point in time I'm going to do everything I can to learn more about it and ways that I can work with him to help him at home. Luckily the preschool he's starting at next month is based in SI (sensory integration) which means that everything they do during the day is based on helping manage/develop/correct their sensory issues.

Second - I'm going to stick with the "autism" label because it's what insurance recognizes for therapy purposes. Well since all kids with autism have SI, then their therapies focus on this area. Occupational therapy is designed to help with the sensory system and luckily our insurance will cover occupational therapy if JD has a diagnosis of autism.

So here's where I get frustrated... how do I know if he's one of those kids with sensory integration disorder who DOES NOT have autism or if he's really autistic and has SI? I guess time will tell. Kids who are not autistic and have SI can grow out of their disorder through loads of therapy. So this is where I'm focusing. I'm crossing my fingers, but not too tight.

1 comment:

Hartley said...


I stumbled onto your blog today and thought I would say hi.

My son has Sensory Processing Disroder, much like yours, and I can relate to what you are saying! Irnoically, I just did an interview with Erki Linthorst for my blog -- he is giving away a copy of his movie Autistic Like: Graham's Story starting Monday.

I would encourage you to check out www.sensoryplanet.com for SPD information and support -- for your area, and in general.

If you have any questions, let me know, I am happy to help you on your journey!

And just so you know, kids do not 'grow out' of SPD -- they will learn to cope, and find more socially acceptable ways to get the input (or avoid it as the case may be) that they need, through Occupational Therapy with a SI approach.

Hang in there!