Monday, January 16, 2012

ASD, SI, and Adoption

I posted previously about how our sweet Geri's doctor briefly put the question of Autism Spectrum Disorder (ASD) on the table, then decided to table it when Geri piped up. The whole thing really struck me on a couple of levels - firstly, I had to appreciate my daughter's absolutely perfect comedic timing and second, I've been thinking about the relationship between autism and adoption.

Some of my reading about adoptive parenting has been pointing out, repeatedly, the prevalence of Sensory Integration (SI) dysfunction in internationally adopted children. The prevailing theory is that kids from an institutional care setting have so little sensory stimulation that they fail to develop a completely functional ability to process the sensory inputs that they do get. This is, however, a relatively new field of medicine and there's not a lot of hard information out there. What there is, is a lot of treatment protocols with a lot of very dedicated parents who proclaim their success.

I'm the sort of person who doesn't like to just drink the Kool-aid without checking the contents, so to speak, so when I was reading about one particular method for the treatment of SI dysfunction called the Wilbarger Brushing Protocol (or as we now call it, "brushies"), I decided to take to the internet for more info. A quick Google search pointed me to several webpages talking about SI dysfunction in general and referencing the Wilbarger protocol directly. Checking out the videos led me to a nifty demonstration that one mom had posted that showed her performing brushies and compression therapy, or "squishies", on her son.

Her son was autistic. The sidebar of related content populated with video after video of "BRUSHING MY AUTISTIC SON" or "BRUSHIES FOR SALLY-AUTISM" and such. It seemed that brushies was rampant among parents of autistic kids, as was squishies and oral defensiveness training and heavy work and pretty much all of the SI therapies that I had been reading about.

Which leads me to wonder, what is the relationship between ASD and SI dysfunction, and where do our adopted kiddos sit in this terrain?

A lot of SI Dysfunction symptoms can mirror or imitate ASD symptoms. The child who appears to reject social contact may be arching out of your arms because they are overstimulated by your touch, or refusing to speak to someone because the sound of their voice is hard for them to handle. The child who is auto-aggressive may have ASD or they may have such a reduced reaction to touch that they have to hit themselves for sensory input. The child who doesn't chew their food may be autistic, but they may also have oral-motor defensiveness from an SI problem.

More to the point, the child who has been deprived of sensory input in an orphanage or hospital may show symptoms of SI dysfunction that are mistakenly diagnosed as autism. Combine that with a child who has difficulty with emotional connections due to institutional care and an adopted kiddo could look very much like an autistic kiddo.

And to muddy the waters further, SI dysfunction appears to respond to some of the same therapies as autism. So even when progress is made, it could appear to confirm an autism diagnosis or lack thereof!

What's a parent to do? Well, I'm no expert but here's my advice. First of all, try everything that your doctor/therapist recommends or approves. Never rule out a therapy because "my kid's not autistic so he doesn't need that" or "I'm sure he'll be fine with more hugs." Sometimes you will find that a therapy for one condition is helpful in another. Sometimes you need to perform therapies for a problem that you aren't sure your child has, just because it has the possibility of helping. If the risk of damaging your child is low, then why not embark on new a therapy regimen?

Don't let anyone put labels on your adopted child too quickly. What looks like autism could be simply an adjustment period. What looks like SI problems could be a child who is trying to handle a totally different environment that is completely unfamiliar. I'd probably spit out weird foods the first few times I tried them, too, if I were in my kid's shoes! Try the therapies (see above), but don't buy into a label too early on.

Only work with doctors you trust, and try to find doctors who have worked with adopted kids before. I've ranted about this in the past, but I can't emphasize enough how different it is trying to get medical care for an adopted kid. Especially a kid who has lived in an orphanage or come from overseas. Most medical professionals haven't seen much of this, so they miss nuances of the situation. And really, you should never take your child to a doctor you don't trust. Their care is too important to put it in the hands of someone you aren't sure about.

Do your research. If you trust your doctor then this is not a matter of trying to do his job or second-guess her. It's about expanding your own understanding so you can be a knowledgable participant in your child's care. You are the one who has to go home and carry out the medicine schedule and the complimentary therapy regime. You are the one who has to wrangle with insurance. You are the one who has to advocate for your kid at times when your doctor is not around. You can't afford to be the dope who just goes with the flow in this situation.

For my own part, I'm definitely finding that trying new, low-risk therapies is a good approach. We started Geri on the brushies and squishies at every diaper change, about one week before that infamous doctor's appointment. During the appointment I asked Dr. Kim if he had heard of the Wilbarger protocol and the joint compressions and what he thought of them and he replied that he had heard of them and that he definitely thought they had contributed to the marked difference in Geri's demeanor. I've also been doing some eye-contact practice and oral defensiveness work alongside the brushies and squishies, and I'm happy with the progress we are making.

The only downside is that it now takes about 20 minutes to change her diaper!


  1. I saw a cool board game on eBay that made me think of you. It was an alien game marketed towards autistic kids, but it was geared toward mouth movements and language.

  2. The interesting thing is that although most people associate sensory issues with ASD/PDD diagnosis, it is not currently one of the criteria for these diagnosis. I have heard that sensory issues will eventually become one of the criteria when the DSM V comes out....I've been waiting for the DSM V to come out for over 10 years.