Me and my kiddo

Me and my kiddo

Friday, March 5, 2010

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



8 comments:

  1. There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training - AIT).

    Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.

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  2. I am always cautious because there are so many therapies out there claiming positive results. There are easily dozens of nutritional therapies, visual therapies, and tactile therapies.

    I think the key issue is that the autism spectrum is so broad that what works beautifully for one child can easily make no difference or even be detrimental for another child.

    That leaves parents in the situation of evaluating each suggestion and deciding if it's worth a trial, all things considered.

    Thank you for the suggestion. I ordered the program and am always looking for ways to improve my son's functioning. From the excerpt I heard, I would guess he'd rip the head phones off and veto further interaction. He might think it's hysterical though and listen happily for three weeks. Summer is coming up when he'll have the time though, so we'll see :)

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  3. Hi Rachel,

    It's been a long time since I asked the question and finally just now fully read your answer. Thank you so much for the detail.

    One quick follow up do you have an advice or lead to give on locating the best possible occupational therapist? Obviously I'd have to judge each individually but if there is any touchstone or starting point that you are aware of that would be useful.

    Thanks again,
    Kevin

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  4. Kevin:
    You're right, this is a highly individual issues and, to make matters worse, there are often huge waiting lists. I have a few ideas that have worked for me.

    - Get on the list early.
    - Poll respected doctors, local groups for which service centers or providers they think are the best. (With local groups, I'd focus on finding a member of your chapter of one of the national autism associations. The point being, we're looking for social expertise. A therapist with superb skills at treating muscular disabilities may just have a different skill set.)
    - Experience isn't that important. At this level, it's much more about the connection they can build with a young child. I've seen therapists who have been around for 20 years and just don't have that critical engagement skill with kids.
    - If you get into a center, it's often easier to switch providers (without waiting again), if you think it's not a good match.
    - Joint therapy, with both a speech therapist and occupational therapist at the same time, can be a good option for consolidating time and nurturing budding social skills too (if a peer is included).

    Fond regards,

    Rachel

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  5. You can find an occupational therapist who has received advanced training in sensory integration theory and intervention at this site
    http://portal.wpspublish.com/portal/page?_pageid=53,83247&_dad=portal&_schema=PORTAL

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  6. Thanks, Heather. That's a great resource!

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  7. My daughter has SPD and is extremely sensory defensive. We have just finished Berard AIT - www.aitinstitute.org. It was stressful, but we read a book called "Meghan's World" about a little girl with her same issues so she knew what to expect from it. I can keep you posted as to how she improves. Her audiogram already shows she is less sensitive and she's had a couple of breakthroughs already. I also want to mention http://brainbalancecenters.com - it contains good info on neuro-behavioral disorders and they have learning centers if you are looking for education/therapy.

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  8. Jennifer: Thanks for your comment. It is clear to me that SPD is such an individual diagnosis. I think parent needs to choose interventions based on their child's complete picture. Thank you for sharing resources that have worked for you :)

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