Autism Follow Up, Sensory Integration Dysfunction

Wow, thank you for all the feedback I'm getting on yesterday's autism post. The comments are fascinating for me to read and respond to as this issue has become so part-of-the-normal for me.  

With his permission, I'm posting a question and my response. I'm really trying to keep track of what I'm writing and thinking in one place and I think the responses are often useful.


Kevin McAllister wrote:  
Rachel,  
Thank you very much for this account. It's actually a great coincidence and very helpful to me, I was going to email you last week privately to ask about some of this experience because my youngest daughter (Ashley 3.5) has exhibited a very few of the obvious signs of autism. She really likes sitting and rocking and banging her back and head against the love-seat for comfort, or can get into a rhythm repeating a phrase over and over, is generally independent, very shy, and can reach ballistic levels when routine is changed. But based on your account, we're not even in the same neighborhood, Ashley is very engaged with her older sister and also with us. Do you have any other recommended resources on sensory seeking issues? Also I'll agree with Burgess, the work you've done is amazing!  
Thank you, 
Kevin  


Dear Kevin,  

Thanks also for your warm words. I think the best book for learning about sensory integration issues is: The Out-of-Sync Child (I've often heard it referred to as the bible for Sensory Processing Disorder / Sensory Integration Dysfunction. The terminology is not settled.)  The tools described are powerful and valuable for any kid.   Every kid is learning to integrate their sensory data and will have preferences, often strong ones! When it goes beyond the normal and starts impairing their ability to interact with the world, then this could be the medical label (i.e. time to get a doctor's advice).  

The issue with this disorder is that instead of receiving "normal" neural feedback and modifying a response appropriately, there is a dysfunction. The child either over experiences or under experiences. Those who over experience the neural, sensory feedback usually have aversion issues. A dog barks and they'll cower under the table covering their ears (auditory). They walk into a movie theatre and start gagging violently because of the smell of popcorn (olfactory). They get a light hug and shriek in pain or have a complete melt down because the tag in their shirt scratches them (tactile). The issue can be with any sense, even taste, but the key is that the sense experienced isn't modified normally and they thus physically experience it as a severe stimulus. Then, there are those who under experience. Their brain isn't getting the full neural feedback from the sensory experience; it's muted. So, they will fling their body into you and squeeze with every ounce of their strength for what feels to them like a normal hug (tactile). Their speech volume can make your ears bleed but it sounds normal to them (auditory). They'll stuff their nose in a pile of fresh chopped onions (olfactory). They'll lick bathroom counters or relish spices that would normally be painful (taste). The key is, again, that the signals aren't getting through correctly, there is a dysfunction in the sensory processing or integration. Finally, it's not either or. Kids can have a mixture of sensory aversions and sensory seeking behaviors as different senses are processed differently. Their difficulties are also on a continuum of mild to severe.

There are standardized sensory profile tests that can really help give a more comprehensive picture. The most useful ones I've found ask the same 100 or so questions of both the parent and teacher/therapist. They can help hone in on if there's an issue and, if so, precisely where in the processing continuum. Most of the autism specialists that I have encountered, also have a basic understanding of sensory challenges and can assist with getting some basic testing.

Early intervention gets the gold medal in treatment for these issues. As far as effectiveness goes, the earlier the better. We know how those little brains are morphing and changing and the sooner we can help them the better. So, I'd say Ashley might enjoy a lovely visit with an occupational therapist or other professional who can evaluate the full picture. They might give you a few tools for a sensory diet like in The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder . They might say she could benefit from occupational or speech therapy. Just to clarify, once the unease about a new situation wears off, these therapies are highly pleasant outings for kids where they get to play games, create projects, and bond with a professional who is carefully honing in on teaching self modulation or other skills. Not that it bothers me, but if I'd understood what was going on, I would have started at least six months earlier. I could have saved my son several months of stress with being so out-of-sync in his Montessori preschool. Ashley's rocking, head banging, perseverative behavior, and routine adherence could just be part of her learning, but it's worth being sure since early intervention is so precious.

Warm regards,

Rachel