Gifted Issues Discussion homepage Forums Twice Exceptional SPD and the DSM-5

I think I read that there were no changes made to the autism category, which was to combine all the different diagnoses under the umbrella of Autism Spectrum Disorder. But I think they are still considering it. There may be info on the APA website related to that aspect (and many others) of the DSM revisions.

DeeDee and others who may desire more information on OT and SPD:

The SPD Foundation focuses on continuing the work of A. Jean Ayres, OTR, PhD, who first published research on what she called sensory integrative dysfunction in 1972. Her book should be read by anyone looking to gain a deeper understanding of sensory integration theory: http://www.amazon.com/Sensory-Integ...mp;ie=UTF8&qid=1280546985&sr=1-6

Dr. Ayres also wrote a book for parents and laypeople to better understand sensory integration which is a bit easier to read. I recommend it to all the parents I work with:
http://www.amazon.com/Sensory-Integ...mp;ie=UTF8&qid=1280546985&sr=1-1

The SPD Foundation has a library of research and related articles on SPD that you can review as well:
http://www.spdfoundation.net/library.html#research

The American Occupational Therapy Association also has resources on theory, intervention and research related to sensory integration, including a compendium of recent scholarly publications related to SI:
http://www1.aota.org/shop_aota/prodview.aspx?TYPE=D&PID=842&SKU=1248


As an OT I am trained and qualified to assess a person for functional skill deficits that result in impairments in occupational performance. Occupational performance tasks for a child include activities of daily living (eating, dressing, bathing, toileting, etc), play, academics and/or school, and social roles (peer, parent/child interactions). OT practice involves using task analysis to determine what impairments or obstacles are present that limit the person from successful participation in daily activities. We then provide interventions that address the impairments (direct interventions, environmental adaptations, training and education of patient/family, etc) to achieve the goal of more successful participation in meaningful roles and occupations.

As an SI trained OT I am fully qualified to assess a child's performance and determine if there are clinical signs that suggest the presence of sensory integrative dysfunction which is impacting on functional performance. OTs are NOT qualified to "diagnose" a child with a sensory processing disorder since there really is no such "diagnosis." Only when, and if, it is officially entered in the DSM can ANYONE label a child with SPD as a diagnosis. Until then it is only description of a cluster of symptoms which fits Dr. Ayres' descriptions of sensory integrative dysfunction. Funny thing is though, I often receive prescriptions from doctors for a child to have an OT evaluation and treatment with the "diagnosis" listed as "sensory issues," "sensory disorder," or "sensory based movement disorder" among other descriptions.

In terms of your phrase "acuteness of senses" I am assuming that you are referring to sensory sensitivities. This is but one subtype of SPD as described by Lucy J. Miller, OTR, PhD, in her book The Sensational Child. Children often present with more than one subtype of SPD and can have a combination of modulation disorders (over or under responsive to sensory information) and motor disorders that are the result of poor sensory processing. It is very important to understand that SPD presents in different ways. It is much more than just tactile defensiveness. And sometimes doesn't even include sensitivity to tags or socks!

Sensory integration theory and treatment is based upon the integration of vestibular, proprioceptive and tactile processing, with auditory and visual systems more recently being investigated. But that is the topic of my next post.

I would like to address the discussion of muscle tone, from my perspective and training as an OT. All medical professionals use the term "muscle tone" to refer to the same thing: the normal state of balanced contraction in muscle tissue. "Normal" muscle tone falls on a continuum. Some people have a higher resting state of contraction with a better and stronger contraction when they activate their muscles for movement while some have a lower resting state that requires more effort to activate a contraction for movement of a joint.

Our body uses pairs of muscles around every joint to maintain stability and activate movement. These are referred to as flexor muscles and extensor muscles. For both postural stability (such as staying seated in the chair with my hands on the keyboard as I type) and movement (my fingers as they fly over the keyboard) I must control my muscle tone through both voluntary and involuntary means - using my central nervous system (aka: brain)

Problems with muscle tone exist, as Lori and PTP have already discussed, in conjunction with many, many other disorders. We do, most often, think of people with brain injuries (CP, strokes, head trauma) who have very high or low muscle tone in one of side of the body or multiple extremities. What people often don't realize is that disorders of muscle tone do occur on a continuum and vary in their impact on daily life. Just as autism falls on a spectrum, a stroke can be mild, or someone has "mild diabetes," abnormal muscle tone can be "mild." That doesn't mean it doesn't impact on functional performance.

For many people, problems with muscle tone CAN be traced to a specific disorder, a head trauma, a metabolic disorder or other condition (see Lori's post). But there are some kids, adults even, who struggle with low muscle tone and DO NOT fit any of those categories. These are often the kids I see in my OT practice. I suspect that this is what the neurologist was referring to when he said that Lori's son's muscle tone was the result of his sensory processing disorder.

Sensory integration theory looks at the vestibular system as a primary component of the sensory integrative process - combined with the proprioceptive and tactile systems. This site has a great summary of vestibular processing:
http://nspt4kids.com/health-topics-conditions/vestibular-processing/

As you can see, if you read about half way down, the vestibular system is directly linked to the activation of muscle tone. Developmentally we know that as an infant's position changes (by being held, moved, learning to roll over, being able to hold their up against gravity), the effect is that the vestibular system activates muscle tone. When we see a child in OT who has low muscle tone the intervention is highly movement oriented and includes LOTS of vestibular based activities that activate the system and facilitate muscle tone. We enhance the intervention by including proprioceptive and tactile input. We also know that including the visual and auditory systems into the loop further impacts vestibular processing. Neurological science reports that the vestibular system is linked to every lobe of the brain and impacts on almost every part of the central nervous system.

So this is how low muscle tone can be "a sensory processing issue." I see many children who are struggling with producing written work at school, unable to stay seated in their chairs, habitually lay down on the rug or against their friend during circle time, are unable to get dressed independently because they can't sit up unsupported or stand on one leg, or can't chew pizza because their jaw gets tired.

These children are deserving of treatment to improve the quality of their lives even if they don't present with severe CP or multiple handicaps. They may appear to be "normal" and be mistaken for a problem child who won't cooperate, won't sit still or is lazy. Their parents may be concerned that their child isn't going to make it through high school taking notes if they can't complete their first grade journal. Or worry about how they will be able to keep up with peers in gym class. Or wonder how they will ever get the nutrition they need if they only eat pudding and macaroni & cheese.

Some in our profession (and others) are postulating that our sedentary lifestyles are contributing to increased incidence of low muscle tone related to poor vestibular processing. Others suggest the toxins in our world or our diets. I've read articles that point out how detrimental it is for infants to be in car carriers for hours on end. And the "back to sleep" campaign has even been implicated in some articles - it limits tummy time and the natural change in head position that activates the vestibular system and facilitates the neck and back extensors, as well as ocular muscles that control fine eye movements.

I am glad to see the discussions even on this board, as the more people learn about it the better! I hope we can continue to discuss the issues and help with increasing awareness and understanding so everyone can get the help they need.

Debbie - I'm glad you raised the point that even milder end problems can impact a person's life and warrant treatment. I am sure I am one of many parents who looks back at their own childhood and thinks that if they'd had access to some of this information and help it may have made life easier.

My youngest son has some of the milder issues that are still a concern, handwriting for example. Also at age 9 he still sometimes reverses numbers too (with no reading disability evident). His third grade journal entries were a real problem, and I know part of it is he just needs to try harder, but part of it is that the task is genuinely difficult for him. I do worry about how he will do taking notes in middle and high school.

At the same time he has qualified for gifted programs in JHU CTY (both verbal and math) and won high honors there with his test scores. The problem we have had is in NYC we have been unable to find any OT who does NOT make the sensory approach central to their treatment. My oldest had years wasted with those treatments that did nothing at all for him, and then did very well when we moved out of NY to California and we were able to access totally different services. When we returned to NY (about 12 years ago) there was even a parent movement in NY trying to bring scientifically validated treatment to the birth to 3 programs, and I was asked to help with that (testifying about our family's experience). I am not interested in fighting with anyone about SPD but I am really, really frustrated that this approach which based on my reading and discussions with others HAS been studied already and IS shown not to be of much use is the centerpiece of all the OT programs I can find here in NYC.

As a result my now 9 yo (my youngest child) has had no OT services at all. I would like to find a NYC OT who will work with my youngest son without subjecting him to the sensory programs (which at this point my dh and I will not support), and without having to listen to them use all the ten-dollar words included with all the explanations of sensory integration disorder (throwing around words like "proprioceptive"). It seems to me all that language is part of what disguises sensory integration as "scientific" when it seems to be anything but. I have had enough of their elaborate theory. I wish they would face up to the reality that their theory (which has existed for decades now) has not held up when subjected to properly structured studies.

I am ALL for giving help to kids with the milder end problems -- but please, let it be real help. The problem with giving a bogus therapy to a more mildly affected kid (or one who is basically developmentally normal) is that kid is likely to improve (with or without help) and then the proponents of the bogus therapy can claim credit for the improvement. I find NYC has far too many such treatments in general, and the popular forms of OT are just one example. Psychoanalysis was so popular here that I believe that delayed the acceptance of behavior therapies which my oldest son needed, and are beneficial for many mental disorders.

I find it so frustrating that studies showing treatments are ineffective seem to be ignored when enough people have the agenda to continue providing the service. Instead of trusting the professionals, we then need to have the "buyer beware" mentality as consumers of the services. Sadly that does seem to be the reality in OT, psychiatry, and even with some surgeries, where patients can fail to be helped or can even be harmed if they do not do their own research and select treatments very, very carefully.

By the way, if anyone knows of any OTs in NYC who do not endorse the SPD and "sensory" theories, please, please post to the board or send me a private message. Thank you!

I'm confused Hannah. Has your younger son had an OT evaluation?

I know many children who have received OT specifically for fine motor delays and problems with handwriting. None of these were SPD treatment. Rather, they focused on strength and coordination concerns. I would suggest you don't express there are about sensory problems and instead state specifically that you are looking for an evaluation with fine motor problems with handwriting.

Personally I've never been that concerned that therapists or physicians agree with me about everything. How they treat other people has nothing to do with me if I'm pleased with the specific treatment I receive. I consider it my responsibility to clearly articulate what I need and set the boundaries for treatment.

Hi passthepotatoes, it is a good question.

My youngest child did have an OT eval between K and 1st grade. We looked and looked for someone who did not seem to have a "sensory" approach. But we ended up failing at that, and the woman wrote a long report including results of sensory tests she had administered (the PRAXIS test I think). We never shared the report with the school (which had been pushing for an eval already throughout k). The reason we did not share the report was it was full of sensory recommendations, and other recommendations we found incredibly unhelpful.

There was even a section of the report which stated that the tester saw these things I (the mom) denied, and if I were at home right now I would pull the report and quote some of it (maybe I will do that when I return to NY). She found my son fidgety (and sensory seeking I think), but her testing was done at 5 PM on a hot day when my son had been in camp 8 to 4, and he was tired!

I also objected to the idea she had a long list things she wanted the teacher to do differently for my son, including allowing my son to sit on a bouncy chair while completing his writing assignments at school. My ds comes from a family where there are shadow syndromes of autism and one older brother had the full-blown disorder (autism) among other handicaps. My kids need CLEAR signals about what behavior is expected and when. There is an inside voice and an outside voice. Bouncy chairs are for playtime and NOT for work time.

I think that recommendation for a bouncy seat during writing time is ridiculous for my son and most unhelpful, and I would never bring a recommendation like that in a report to his teacher. So we buried the report and tried to do Handwriting without Tears and other things at home (sad to say the "without tears" bit did not work out as promised!)

My son's next year (first grade) the teacher pushed us to go to a specific center for OT. I found the place had a website online, and I of course checked out what they said about their services there. Turns out the director of that center describes herself as follows on that site: (blank) "has specialized training in the evaluation and treatment of children with sensory processing disorders." When you look at their "services provided" page it says near the top of the list "SIPT Sensory Integrations Praxis Test" and "Sensory Processing Disorder Evaluation." This center by the way is the one more than half of my son's classmates at that (former) private school were sent to for their evals (of course at extra expense to the parents). All the boys evidently had "upper body weakness" or similar problems which were supposed to be some huge problem which could interfere with future academic performance.

I was fairly outspoken with the parents of classmates and we all ended up sharing report cards and teacher's comments about our kids, which is how the parents all figured out so many kids were pushed to go to this OT provider. (Actually the discovery of just how many kids had been referred from that one school came a little later, as our kids were by then in the first half of second grade).

As we were looking at options for 3rd grade, we were floored when a different private school told us they would admit my son as an incoming 3rd grader contingent on our getting him evaluated by that SAME provider of OT services. Wow, that OT provider has some power in our neighborhood! I think the prospective school thought we would go along with it willingly, but we ended up declining the offer of admission instead. Then the school said my son could come even without the eval, but we wound up saying no thanks since by then my son had gotten into a good lottery school (public). My son landed in a 3rd grade CTT class at the new public school though (some kids in the class have IEPs) and there is a child in the class with a 1 on 1 assistant in the room. She is a "para" and really sweet (not fully trained as an OT yet), but guess what her specialty is?

If kids in your community can get OT services without primary focus on "sensory integration" I am pleased to hear it. I wish for us it were as simple as us just not expressing anything about sensory problems, and I wish I could find someone who would provide an evaluation of fine motor and handwriting without also giving the PRAXIS test, etc. I think the sensory treatments are so very popular here it is next to impossible to get away from them if your child gets any OT. And then if you decide to put up with the sensory treatments so your child can get the other benefits from OT, your child comes away with these confusing recommendations (like for the bouncy chair use when the child really needs to be practicing sitting quietly during that activity).

I have some real concerns about this child (my youngest) and maybe I will come back and ask in a new thread how to deal with his issues (he is a real underachiever in school, performing far below his ability).That is another whole story....... (by the way, sorry for the long, long posts).