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

I'm not sure if people here are aware of the efforts to get Sensory Processing Disorder as it's own diagnosis in the upcoming 2013 edition of the DSM-5. You can read about the efforts here:
http://www.spdfoundation.net/dsmv.html

The APA allowed public comment back in March and April and will apparently do so again in 2011. You can sign up to add your comments about SPD (and other proposed changes to the manual). The SPD Foundation will provide a link when the comments page on the APA website is open. Comments from parents and professionals can help to get SPD recognized as a separate disorder which would open doors for further research, treatment options and just increase awareness and understanding. You can join the effort, stay updated and add comments when the time comes!

Debbie, I just read a novel which had a lead character with SPD. It was really neat, except, the novel was disappointing. Other than the character having SPD.

hi doodlebug,
thanks for the update. I had heard a lot of changes were coming in the new DSM-5..and am pleased to see they get public feedback.. do you know anything about the status of the change to Autism and aspergers? i heard it was changing to one dx of "autism spectrum disorder". Do you know if that is still being debated or a done deal?
irene

Thanks. I signed up. I would like to have a chance to add my comments.

My 12 year old son finally got to see a neurologist for his migraines. The neurologist also confirmed that his hypotonia is most likely caused by the SPD because there was nothing in the blood test to indicate that the problem was muscle based.

The good news is that my son's dyspraxia seems to have almost disappeared in some ways. He auditioned and got the part of Mr. Mayor in Seussical. His timing and balance have improved to the point that I can't tell there was ever a problem. I think the dancing he has to do in musical theater helped with that. I watched a video of him dancing from several years ago and I could see that he was more "loosey-goosey" as a friend of mine called it. Since he hit puberty he looks stronger but the arches in his feet still collapse when he stands so he has pain from that and has to wear orthotics which don't help much. The scoliosis brace has been difficult for him. This is a kid who had trouble with clothing tags and had sock problems when he was younger. Now he has to wear a Boston brace underneath his clothes for all of his rehearsals so when the other kids are hot, he is even hotter and heat sometimes causes migraines. He has pain in his feet while at rehearsals and leg pain sometimes at night which keeps him from sleeping. When he can't sleep, I can't sleep. It just about killed me when he told me he was in pain almost every day. I think the doctors my son saw should have been able to help him, but as my son once said they just gave him cliche advice that might work for most people but didn't help him.

The neurologist, unlike the other doctors my son saw, actually listens to him. The neurologist is putting him on a medication to prevent the migraines because he has so many (barometric pressure changes and heat are his triggers) and he says it will help him with the pain at night so it should also help him sleep. It sounds like a wonder drug, but my son told the neurologist that he has learned to not get his hopes up because he has been to so many doctors that did not help him.

The neurologist even seemed interested in the article on sciencedaily.com that I printed out for him that talked about increasing evidence that the processing and perception of sensory stimuli is abnormal even outside of migraine attacks. I have always said that I get something like SPD hours before and then during migraines and I know this is true for my son also. The neuropsychologist tested my son last year when he was getting a migraine. When I questioned the results of the test and mentioned the headache she said she didn't think a headache would make any difference in the testing results, but I know from personal experience that it does. The test confirmed the verbal giftedness but I think his performance scores were lower than they would have been if he hadn't been tested all day (when he has endurance issues to begin with) and when he was getting a migraine. Even though we take headache medicine, it doesn't totally knock out the pain and it does affect our sensory processing, especially visual processing.

I'm really confused by this. How could sensory processing disorder cause hypotonia? I've never heard this claim made even by SPD experts. Does your son appear hypotonic based on a physical exam? Determining the origin of hyptonia is typically much more complex than a simple blood test. What blood test was run?

This is some of the info I found online.http://www.buzzle.com/articles/hypotonia-symptoms-causes-and-treatments.html

What causes Hypotonia?
Genetic disorders such as Krabbe disease, Werding-Hoffman disease, Aicardi syndrome, Down syndrome, Achondroplasia, canavan disease, Riley-Day syndrome (also known as Familial dysautonomia), Griscelli syndrome, Leigh disease, Marfan syndrome, Rett syndrome, Prader-Willi syndrome, Myotonic dystrophy, Menkes syndrome, centronuclear and myotubular myopathy, Dejerine sottas syndrome, Septo-optic dysplasia, Tay-Sachs disease, 22q13 deletion syndrome, Trisomy 13 and FG syndrome etc. are the main conditions that causes hypotonia in infants/children.

There are many conditions leading to development of hypotonia, which are: muscular dystrophy, metachromatic leukodystrophy, infectious disease such as encephalitis, sepsis, meningitis, infant botulism, Guillain-Barre syndrome, poliomyelitis etc., myasthenia gravis, celiac disease, problems caused due to improper vaccination or abnormal reaction to vaccination, congenital cerebellar ataxia, congenital hypothyroidism, hypotonic cerebral palsy, teratogenesis (caused from utero exposure to Benzodiazepines), sensory integration dysfunction, dyspraxia, metabolic disorders such as hypervitaminosis (vitamin poisoning or vitamin overdose), rickets and kernicterus, problems with central nervous system dysfunction, any kind of brain injury that had direct or indirect effect on the nervous system (brain injury caused in an accident or injury caused in a child suffering from shaken baby syndrome), motor neuron lesions etc.

How is Hypotonia diagnosed?
Physical examination can help in confirming some symptoms such as inability to flex muscles for longer time, delayed response to stimulations, delayed physical development, speech problems, feeding problem for an infant due to inability to suck breasts properly etc. If the disorder is thought to have affected brain then it is considered to be cerebral palsy, if the problem is related to muscles then it is called as muscular dystrophy.

Family medical history, CT scan, MRI scan, EEG (Electroencephalogram), genetic testing (which involve testing for abnormalities in genes, chromosome karyotyping etc.), blood test, electromyography muscle test, muscle and/or nerve biopsy, spinal taps (also known as lumbar puncture, used to collect cerebrospinal fluid for analysis) etc. are other tests used to diagnose Hypotonia disorder.

I think one of the tests was CPK or something like that. I don't know what else the doctor was looking for, but he didn't feel that any more testing was necessary, not even an MRI. My son's hypotonia is mild but he does not have the endurance that other kids have even though he gets regular exercise. We were told that he had hypotonia when he was 12 months old. He couldn't stand up without support and the muscles in his legs quivered like they were really weak but he was able to walk at 18 1/2 months. His core muscles and legs always seemed weaker than the rest of him. I have tried to learn as much as I could about all of this but I am still really confused also.

Sorry, my post may be unclear. I'm very familiar with hypotonia as I have a child who has been diagnosed with it and we've been through quite a lot of testing with neurologists, geneticists, etc. In none of that have I ever heard that SPD causes hypotonia and I can't imagine how it would. It makes perfect sense that having hyptonia could interfere with sensory processing as part of the sensory information the brain receives comes from muscles. So, if a child's tone is very low their brain may not be getting as much information such as where the body is in space. To put it in simple terms, when the brain is getting less information from one part of the sensory system it can cause the other parts to go into overdrive to compensate.

Sensory processing problems are real, but much like hypotonia, it is at best a very fuzzy, nonspecific diagnosis. It is more a set of symptoms than an actual diagnosis with a clear cause. I don't think it is fair to say SPD could change a person's muscle tone.

If hyptonia is a significant enough problem that it is interfering with a child's ability to enjoy activities, I believe it deserves a complete work up because some of the causes of hyptonia are treatable. This is particular true for milder metabolic disorders which are more frequently being diagnosed. I'm glad we pursued testing because it has made a big difference here.

I hate to see hypotonia dismissed as not worthy investigation because hypotonic individuals can face serious problems as they mature. First, there is a greater risk of scoliosis (as you've experience). Also, as hyptonic individuals mature as adults they can also face greater wear and tear on joints much younger than people with typical muscle tone. Even without a causal explanation for the hyptonia, physical therapy focusing on increasing strength and using proper posture and ergonomics can make a huge long term difference.

If you have a copy of his bloodwork you may want to do some investigating online. It is not uncommon for families to be told by neuro that the numbers are in range, but to later hear from genetics that there wasn't adequate testing being run.

When the neurologist ordered the blood tests, he did say he was checking for metabolic disorders. He said that my son's difficult birth could have caused his issues but he wanted to make sure it was not a metabolic disorder. My son was born with the cord wrapped around his neck, there was a delay in getting him out, and his heart stopped beating at one point before he was delivered by forceps. We were told that he might have had mild birth asphyxia. I read that a difficult birth can cause sensory issues and my son did have sensory issues that I thought for the first five or so years of his life might just be overexcitabilities. Doctors only noticed that he was very bright and one wrote on his evaluation that he seemed to be high IQ. His hypotonia was mild enough after he turned two that the doctors didn't notice it during routine exams and he had different doctors every year or so at the military base. It wasn't until he started school and a gymnastics class that I noticed the difference in his endurance, balance, and motor abilities. His doctor at the time, the primary care physician, told us that he didn't think the hypotonia was anything to worry about so my son didn't get any kind of therapy at all until he was seven and we had to fight for that. I found a checklist for SPD and took it with me to the doctor and my son got to see a developmental pediatrician when he was seven who told me to read the Out of Sync Child has Fun. My out of sync child didn't think the activities were fun and insurance only paid for OT for six weeks and I don't know how we got that. It doesn't pay for sensory integration therapy and that is what the OT said he needed. I think the dancing he had to do with musical theater was almost like therapy and he enjoyed doing this so that is what he did for exercise, along with a few other things at home to help with delayed visual motor integration. The OT recommended jigsaw puzzles but he never wanted to do them. I think games like Dance, Dance Revolution and Wii Sports helped with gross motor skills.

My son's blood tests came back completely normal. There is no family history of low muscle tone. A lot of people in my family and my husband's family are athletic which makes things more difficult for my son because he doesn't fit in with his own family. The sports people in the family don't care anything about his interests and although he can talk sports (thanks to video games) he doesn't want to talk about sports all the time so he isn't that close to his cousins.

The neurologist thinks that further testing is not necessary and we can't get any more testing unless a doctor orders it.

We got a hot tub so he could exercise in it (with the temperature lowered) to avoid the wear and tear on his joints. He did aquatic physical therapy and the physical therapist taught him how to do the therapy at home so we don't have to make the 45 minute drive to do therapy. She was honest with us and said she didn't know if he would ever be able to lift dance partners. The musical theater director works around his not being able to lift dance partners and lets him take breaks when he needs to. He doesn't seem uncoordinated at all now and I don't see any motor planning problems when he learns new dances. He is able to plan ahead well enough to round up several little kids and get them on stage when they have a scene together. He is never late for his entrances. He does his lines and solos very well and now even the dances even though he has to sit and watch sometimes. The director, who has known him since he was four, tells him he is doing awesome and he is. Other people in the theater group have noticed this as well. I wonder if this has something to do with neuroplasticity and if it can still be called dyspraxia if he is isn't uncoordinated any more.

The only thing that hasn't changed is his endurance. His limit seems to be 2 or 3 hours. He has musical theater practice 5 days a week, 3 hours a day and he is on his feet a lot of that time because he has a lead role. He has been doing this all summer. If exercise alone could fix the endurance issue, it looks like the problem would be fixed by now, but it is not. He is worn out afterwards and he says his feet hurt really bad when all the other kids have plenty of energy and are not in pain. He is learning to work through the pain and this amazes me since he once had trouble with clothing tags. When he gets home and takes off his brace for a few minutes, he often has painful looking red marks where the brace has rubbed against his skin but he still manages to do it all again the next day.

He is very careful to use proper posture when he has the brace off. The orthotist talked to him about how important this would be for the rest of his life. He can only take the brace off for non-weight bearing activities like swimming and I noticed when he sits at the edge of the pool his posture looks very good. You can't tell he has scoliosis. He hopes to keep it that way. You can't tell from looking at him that he has a disability and this makes it really hard to explain to other people. At least now when he wears the brace people are a little more understanding.

Not only are people more understanding, but the younger boys in the theater group tell him they think he is really cool and tell him this all the time. Somehow my son turned this scoliosis brace into something that adds to his "coolness." He makes up stories about it and does knock-knock jokes with it and the kids really like him. This is the kind of "family" I think he needs. He does enjoy being with them. We don't spend a lot of time with our biological sports obsessed family.

This is from the SPD checklist that I took with me to show my son's doctor when my son was about seven years old. This was how I finally got a referral to a developmental pediatrician.

3. Poor Muscle Tone And/Or Coordination:

__ has a limp, "floppy" body

__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk

__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach ("superman" position)

__ often sits in a "W sit" position on the floor to stabilize body

__ fatigues easily!

__ compensates for "looseness" by grasping objects tightly

__ difficulty turning doorknobs, handles, opening and closing items

__ difficulty catching him/her self if falling

__ difficulty getting dressed and doing fasteners, zippers, and buttons

__ may have never crawled as an baby

__ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy

__ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.

__ poor fine motor skills; difficulty using "tools", such as pencils, silverware, combs, scissors etc.

__ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old

__ has difficulty licking an ice cream cone

__ seems to be unsure about how to move body during movement, for example, stepping over something

__ difficulty learning exercise or dance steps

My son had every one of these problems, except for the one about licking an ice cream cone (maybe those neural pathways were better developed through lots of practice) along with some signs of vestibular and proprioceptive dysfunction. Every one of the problems either got a lot better or totally disappeared except for the fatigue problem and I never saw anything on any of the checklists about pain. I think my son's foot pain adds to his feeling of fatigue. The pain problem is what keeps me looking for more answers.

I don't think my son had any problems with muscles or anything else when I was pregnant with him. He kicked a lot. He kicked as much as my former cheerleader daughter did. I think the actual cause of his hypotonia and the SPD had something to do with the difficult birth.

I'm curious
When was he first identified as being low tone? Did it show up at birth, did his pediatrician talk about it or was hypotonia first discussed at age seven with the checklist you mentioned?

I think one of the confusing things for parents is that generally speaking, medical doctors and OTs mean very different things when they talk about "low tone." Here in NYC, OTs I have encountered think maybe 30 or 40 percent of boys (at least) have low tone, sensory problems, and/or "upper body weakness."

My oldest son had a very traumatic birth (born with thick meconium, after our HMO midwife made me push, on pitocin, for 9 hours and did not monitor him too well). In that child's early years he had low tone and even had low tone evident in the mouth, which meant he had trouble swallowing. He developed pneumonia as a toddler most likely from accidentally taking his own saliva into his lungs. He tended to make fists with his hands and seemed to have some degree of cerebral palsy.

I think when medical doctors (like neurologists) talk about "tone" they are thinking in terms of things like CP. When OT's talk about tone (at least here where I live) they are concerned with how a child holds a pencil or how well he dances. A child can be at the top of the lowest third of kids in these areas and get a label of "low tone" from an OT here. IN some practices I think fully half of boys are labeled with "low tone" and my younger children attended a (mainstream, selective) private school in NYC where about 70 percent of children were sent for OT evals and more than half the kids were getting services (paid for by parents of course). All these parents had been told not that their child was low-average in these areas but that their child actually had a real "problem" (diagnosis) which needed the OT "treatment." Of course doctors rarely confirmed these diagnoses. It may even have been the case that at times doctors SHOULD have confirmed the diagnoses but did not do so since there were so many clearly NORMAL kids coming in with these OT-applied labels, that medical doctors had become perhaps skeptical and dismissed too many of them.

The challenge for parents is figuring out where their child is on this spectrum. Some kids have problems which are mild in comparison to something like CP but it might still be a problem for the child. OTOH a neurologist is not going to start diagnosing the way an OT labels kids (saying a huge percentage of kids seen have the diagnosis).

I am aware of a very, very long struggle by proponents of SPD (and related labels, different words, same idea) to get some sensory type label accepted into a DSM. This will of course facilitate payment for services for this "disorder." But a significant problem I think is that the application of the label is so murky it could lead to half of all boys being labeled, which of course would be a gold mine for OTs but might not really provide all the claimed benefit to the kids. There is an interesting write-up about sensory issues in "quackwatch.com"
http://www.quackwatch.com/search/webglimpse.cgi?ID=1&query=sensory

I think most likely parents are seeing something real when they observe the sensory issues but when one does properly structured studies to look at outcomes from treatment, it is not at all clear there is any benefit at all to the sensory treatments. A related problem is deciding how severe the "problem" has to be before it gets the label "SPD" or in this case "low tone."

All three of my kids have some degree of low tone, with the poor handwriting and poor skills in sports as a result. But only my oldest ds was severe enough to really qualify as abnormal by the medical standard (certainly in the lowest 5 percent on low tone with a problem severe enough to really delay walking and competent swallowing of solid foods).

It is challenging for parents to get the help their kids need, but I think it might be helpful to be aware that when pediatric neurologists talk about "tone" and OTs talk about "tone" they might as well be talking about two totally different things entirely. The MDs are thinking about tone problems as in things like CP while the OTs (here in NY at least) are looking at relatively minor issues (compared to CP), and seem to want to think a huge number of seemingly "normal" boys have some low-tone related "diagnosis" (like upper body weakness) which is in need of their OT therapy.

This is an interesting thread.

I do definitely believe that some people have acuteness of senses that others lack, which can be truly troublesome to them (that is, I am not dismissing the real problems people have).

At the same time, I would like to see some real scientific testing to define the parameters of SPD and the science of how it works. I have not been able to find any credible scientific writing about this type of disorder. Until it's understood or at least well described as a phenomenon in the peer-reviewed literature, what can they put into the DSM?

I also personally don't think that most occupational therapists have enough education to provide a diagnosis. Unlike PTs, who need a really intense master's degree, in many places OTs can practice with a bachelor's degree; for me, that's not enough education when you talk about differentiating disorders that may look very alike. Discernment requires education.

And as far as I can see in my own community, SPD is diagnosed almost exclusively by OTs, which also drums up business for them to treat the people they have diagnosed. This is a real red flag for me.

DeeDee

bc spd isn't in the dsm....it isn't covered by my current insurance. label it what you like....but my kid needs help. he isn't just a little sensitive.....he is extremely sensitive. it does effect his daily life. when a kid licks cats and car tail pipes, eats a book of stamps, toe walks, is constantly hurt bc he is constantly falling, can't handle loud noises (like hides under a chair with his ears covered and rocks bc a crying baby entered the office), walks late, potty trains late, throws up when they eat soft foods, has to wear sound reducing ear phones to the movies, wakes up multiple times per night (still at 4.5) because they are itchy/hurting/bugged, is paralyzed by change, or scratch themselves until they bleed when mad/sad/frustrated.....but at the same time are teaching themselves to read/add/subtract as a preschooler.....it is a problem. yesterday he both woke up 4 times in the middle of the night screaming bc he was itchy or hurting.....and figured out how to multiply.

oddly enough....he also:

has a floppy body
w sits
grasps objects tightly/incorrectly
struggles to open a door knob
falls often
crawled late
is clumsy

in fact....his body is so loose and floppy that we can not get any services for his toe walking even. the orthopedic surgeon said he was one of the loosest kids she had ever met....and that he would be much appreciated in gymnastics so i ought to sign him up. i did.....but it was so loud in there to him that he spent almost the entire hour making "carpet angels" on the floor in an attempt to soothe himself.

as his mother...i'd like to see spd make it into the dsm just so maybe he can get some treatment. i can only do so much for him, i need some help!

He was floppy from birth and had trouble holding his head up and he slouched when we sat him up. He couldn't sit by himself until he was 9 1/2 months, but it wasn't until he was 12 months old that a doctor told us he had hypotonia. He did see a neurologist for about 15 minutes who confirmed he had hypotonia and ordered a blood test but no other testing was done. My son was also tested by people from our state's early intervention program--an OT and I think the other person was a child development specialist. They said he tested 50% delayed in motor skills but his receptive and expressive language skills were 50% advanced. They said it was very unusual for a child with this kind of motor delay and weakness to be as advanced as he was in other areas and they had not seen another child like him. They saw him look at the alphabet book, look at the letter A and say it. They said they could do therapy and it would be free but he would have to get his doctor's approval. The doctor wouldn't sign anything. I still don't understand why. I think he wanted to wait and see if my son improved without intervention and my son did walk at 18 1/2 months.

My son never had any trouble with his speech. He didn't have any trouble nursing as a baby. The hypotonia didn't seem to affect his mouth at all. He has always talked a lot, was very social, smiled at people more as a baby than his very social sister did. When he started walking at 18 1/2 months I thought he was okay, especially since the doctors didn't say otherwise at regular checkups. He started reading on his own one year after he started walking. He often sat in the W position and leaned against things for support, but I thought nothing could be done for hypotonia because that is what we were told.

OMG! my son did not walk until he was 17 1/2 months old.....and even before he could walk he knew all his letters and sounds and then was decoding by himself by the time he was 3. our PT seemed to think he was delayed in walking bc he didn't like how walking felt. since he went on to become a toe walker.....i mostly agree. i also thought that once he started walking it meant he was typical. i guess i was wrong. ???

I have read the normal age range for starting to walk is 9 to 18 months, so momma2many I think you don't need to worry about your ds learning at 17 months. It sounds like he was busy with other things in any case. That is something I have seen in all 3 of my kids. They get very interested in something and then delve into that while ignoring just about everything else!

Lori, that sounds incredibly frustrating, and I would have been furious with the doctor for not signing. My oldest had all those issues of needing support in a chair, etc as well. We did not quite get the help we needed either, but that child has ended up compensating for all of it extremely well. I'm sure your child will do well too, and btw I am glad there is no swallowing issue for your child. Those are quite scary.

What type of services has he been denied for? Do you have private insurance? Has he had an OT and PT evaluation? We've had several different kinds of health insurance and all have been good about covering physical and occupational therapy for hypotonia and significant motor delays. Many companies balk at paying for sensory integration therapy because the evidence is so limited, but most will pay for therapy for significant motor skills delays.

As far as the suggestion of gymnastics, it is a very good one. Other good options for hypotonic/uncoordinated kids including: swimming, horseback riding, martial arts, and dance. While our child has been fortunate to get quite a lot of therapy, he has made equal or greater gains through these sorts of activities. I know it frustrated me when he was younger when we got these suggestions because it seemed sort of like saying it wasn't a serious problem if something like karate could make a difference, but really this suggestion is commonly made by neurologists and others because it often works wonders. Here it hasn't been necessarily that dramatic for the actual muscle tone/ floppiness problem, but it has been HUGE for increasing coordination and improving strength which is vital for a healthy life with hypotonia.

I would also encourage anyone with a child with these sorts of symptoms to look at hippotherapy or therapeutic riding programs. Sometimes they are actually less expensive and easier to qualify for than other therapies. I've seen several kids, including mine own, improve dramatically. It is particularly good for hypotonia.

Finally, for anyone with a child with these sorts of challenges to read about diet and supplementation. It can make a huge difference.

I agree. Hypotonia is a vague diagnosis and there is a huge spectrum with the milder end certainly overdiagnosed by some OTs. My hyptonic child sounds similar to your son that was most affected. He had a significant degree of hypotonia from birth and was very delayed in motor development - difficulties with chewing and swallowing, not sitting until age one, not walking until age two and all of that happening only with therapy. Clearly this is something distinctly different kids who has just minor handwriting delays.

My experience is that many neurologists do acknowledge there can be such a thing as sensory processing difficulties. It is a well known part conditions autism and various developmental disorders. What is more questionable from some neurologists is that sensory dysfunction can exist independent of other disorders and that it can be treated by sensory integration therapy.

I'm personally not impressed with quackwatch as a source of information. I find it is generally dismissive of any nonmainstream approach. While I can understand this position, I also think as parents we can't necessarily defer the needs of our kids in order to wait for all of the needed research to be conducted.

While I have no idea of sensory integration disorders is a legitimate stand alone diagnosis, I can say as the parent of a child who had sensory problems I won't dismiss the significant difficulties they can pose. For our child's daily life difficulties with movement, tolerating noise, etc. were as significant and threatening as his difficulties with activities like chewing or climbing stairs and perhaps even more so. He had sensory therapy and I would describe it as moderately helpful. I have seen other kids have more dramatic results though.

http://www.bls.gov/oco/ocos078.htm

My understanding has been that occupational therapists need at least a master's level training and certification.

Many of the children the OTs work with have very significant levels of disability and in our experience they were as competent and serious at PTs.

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).