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

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.