sensory processing disorder and the DSM-V

Published December 7, 2009 by Nancy

Dr. Lucy Jane Miller and the folks over at the Sensory Processing Disorder Foundation have been plugging away for years to get recognition for sensory processing disorder (SPD).

They’ve now got a submission into the American Psychiatric Association (APA) for the next Diagnostic and Statistics Manual (DSM). The DSM is the United States’ official book of psychiatric disorders. We’re on the 4th DSM right now, and the 5th is due sometime in 2012.

Yay! What a milestone!

So why the big deal about the DSM?

Basically, if your disorder ain’t in the DSM, it doesn’t exist.

Never mind that this thing gets revised every few years, some disorders get tossed out, some new ones get added it. Every professional with an area of psycho-neuro expertise clamors to get their disorder into the next DSM. Meanwhile, the APA buttresses their book to keep the interlopers out, lest everything get watered down too much.

The battle lines are drawn around who gets to decide what’s real or not. And how to determine it. By popularity of diagnoses? By formal testing?

The DSM is a very human book.

All it says is: This is what we think right now. That’s all it can say. Psychology isn’t a science the way physiology is. Nothing in the DSM is carved in stone, immutable, unchanging. Diagnostic criteria are symptom-based and vague. They are shape-shifters. They overlap, and the lines between them are hotly debated.

And yet in the world of professionals, despite everyone knowing this, it’s the holy grail of psychology.

There are alternatives to the DSM, of course, such as the World Health Organization’s ICD, manual. But the two books move in lock-step. They have to. Credibility and consistency in diagnoses depend on it. So what’s in one will be in the other.

The problem for SPD is that both books refer to individual symptoms of SPD, but not to the whole enchilada.So the argument may be: We’ve covered these issues under these other disorders. We don’t need a new listing.

I’m curious how this will play out.

When I was first submitting The Sensory Team Handbook for publication, I sent it to the APA’s Magination Press. Magination Press publishes books on psychological issues for children.

Hey, I thought, what a great match!

I received a polite letter in reply, stating that although the book seemed very useful, the APA does not believe in sensory processing disorder and therefore would not consider publishing it.

Does not believe in.

What on earth is a belief system doing in the APA?

And how much of this belief system is going to affect Dr. Lucy Jane’s submission?

The buttress walls around American psychology are high and strong. They have nothing to do with science, and everything to do with protecting psychology from the taint of outside things.

Meanwhile, there are millions of kids in the world who are struggling with an ill-defined, unrecognized disorder, one that deserves a name and a page somewhere, so that these kids can get the simple, effective treatment they need to get rid of these problems.

As I said, I’m curious how this will play out.

*****

BTW if you’d like to make a contribution to the DSM-V submission project, you can do it at the SPD Foundation website.

sensory processing and riding a bicycle

Published November 14, 2009 by Nancy

Ah, the summer joy of riding a bike… whooshing down the street, flying down the hills and racing up the other side, zipping across town in five minutes flat…

Alas! for kids with SPD, riding a bike ain’t like that.

Imagine square wood wheels and unscrewed handlebars. Add a seat so high you have to lean down to hang on.  Then imagine riding along a freeway with transport trucks rumbling and belching and pulling at the air beside you.

Fun, huh?

Why is cycling so hard for SPD kids?

Their vestibular sense is not plugged in securely to their brain.

Vestibular = balance = keeping upright and moving forward

You have to be able to feel the balance and the forward movement. Not easy if your vestibular sense can’t communicate to your brain. You never really know where your body is relative to gravity and the hard, hard road below you.

Even two or three years after learning to ride a bike, lots of SPD kids are unsure on a bike. Think of a slow earthquake, or a canoe in choppy waters. Up goes their adrenaline and panic… and down goes their ability to focus on their balance.

And too often, down goes the bike.

Also, their proprioceptive sense is too weak (or too strong).

Proprioceptive = muscle strength and control = pushing, pulling, and lifting

You have to be able to control your leg and arm muscles to keep the bike going at a level speed. Slowing down too much, pedalling unevenly, or putting too much weight on one handlebar — any of these can all tip over the bike.

Going uphill is hard if the leg muscles are floppy. And shifting gears becomes something to panic over if your brain gets confused when it has to send messages to the hands and feet at the same time.

Not to mention that without a good sense of sound and sight, you’ll freak out in traffic.

Think about it. If you are concentrating on keeping your balance and sending all the right messages to your hand and leg muscles, there isn’t much room for other information. Anything can set you off.

Meanwhile, you are sharing the road with noisy cars that creep right up beside you.

You know they’re dangerous. You know you have to follow the rules of the road. But there is only so much room in the brain.

It becomes too much to handle.

Yet biking is an essential skill.

Bikes are the main mode of transportation for pre-teens and teens. They need to be able to get around, to go over to a friend’s house, or even to get to a job. So just avoiding bikes is not a good option.

Remember: an SPD kid can learn to ride a bike. It just takes more time to build up all those missing nerve pathways.

In the long run, it will do the kid a lot of good. Those nerve pathways can be used for a lot of different tasks, such as climbing a ladder, canoeing, or dancing.

So make it as easy as possible.

1. Don’t buy a cheap kid’s bike. These bikes are all the standard “mountain bike” style, where the rider is hunched over the handlebars. This position is difficult for balance. Go to a reputable bike store and find a hybrid bike. Hybrids use the old-style frame, which lets you sit more upright, but they have all the up-to-date gear and wheel systems. It is far easier to keep balanced on a hybrid than it is on a mountain bike. Also, it’s far easier to see the road ahead of you if you aren’t hunched over.

2. If possible, get a frame with a low crossbar. The high crossbar makes it difficult for the rider to stop — or to stand  on the pedals for going uphill. Your kid will feel safer being able to touch the ground.

3. If your kid gets confused by the hand-controlled gear shifts, then simplify it. Teach just three gears: the main one for flat roads, one gear up for uphill, and one gear down for downhill. That’s it. Forget the rest. If your kid can learn to shift just one gear at a time, then the skill is there for changing two gears later on. In the meantime, avoid big hills.

4. Ride every day. Ride together. It doesn’t have to be far. Short and successful is great. Can you bike to the store for a treat? To the lake to skip stones? To the park to go on the swings?  Keep it calm and positive.

5. Keep the tires inflated and the bike height-adjusted. SPD kids won’t necessarily feel when the tires are soggy, or when the pedals are cramped. They’ll just feel confused. Each confusing or unpleasant bike-ride is several steps backward. To keep things positive, keep them technically perfect.

6. Don’t ride in rain or cold, even a small amount. Remember, SPD kids feel cold and damp more than other people. So weather will add a new sensory irritant that you really don’t need. Bike only when it’s going to be successful, and avoid anything that will make it go poorly.

And if you think it’s bad when they’re learning to ride a bike…

Just wait till they’re learning to drive your car.

****

Judith wrote in with another suggestion: bikes without pedals.

Learning to ride a bike that has no pedals can bypass some of the motor issues so that the kid can focus just on the balance issues. You can view these European inventions in action on Youtube.

Breaking down the bike-riding task into balance first, then motor might be a brilliant solution for SPD kids.

How hard would it be to take an old kids’ bike and jimmy it to ride without pedals?

making a weighted vest for an older kid

Published August 16, 2009 by Nancy

What use is a weighted vest?

Till you try it, you don’t know.

So making one cheap as an experiment is a good idea before buying one of the expensive ones.

Besides, most of the pre-fab weighted vests are for preschoolers. Why do people seem unable to realize that these kids grow up???

Here’s what we found about weighted vests and older kids:

1. The first minute of wearing the weighted vest can be crushing. The kid falls to the floor in a puddle of icantdothis.  Expect drama. Turn it into comedy. Rule: Wear it for one minute, twice per day.
2. After three days, the kid has built up enough core that he can wear it for 10 minutes at a time. And that might enough.

What’s the vest doing? It’s waking up core muscles. This stimulates the connections between those muscles and the brain. The more that information goes up and down these connections, the stronger they get.

Kind of like paving a rutted path more and more till it becomes a super highway.

The core muscles support all the other muscles (arms, legs, neck). So these are the first ones that need to be strong.

How to make a weighted vest

1. At a used clothing store, buy a vest about the right size. Fleece it fine. Lined is good if you can find it. Handpockets are very good.
2. Also buy a small piece of non-stretchy fabric that matches the vest (or stick with black).
3. At a budget sporting goods store, but two sets of soft wrist weights with velcro fasteners. [Note: if you are short of cash, you could make these with old socks and playground pea-pebbles. Remember to sew divisions into the socks so that the stones don't all fall down to the bottom in a big lump.]
4. For each pair of weights, lay the strips of velcro on top of each other so that you fasten the weights in one long strip. The velcro strip will be the shoulder band. One weight will lie on the front, one on the back.
5. Put on the vest and hang the weights over the shoulders. Pin where the bottom of the weights sit and remove the vest.
6. Using the fabric, create a pocket for each of the weights to sit in. You want the bottom of the weight to rest at the bottom of the pocket to help distribute the pressure. The pocket should be exactly the length of the weight (not including the velcro band) so that it’s easy to put in and remove.
7. Create additional weights for the handpockets to balance top-to-bottom. Make small beanbags out of playground pea-pebbles. An alternative is plasticine or art clay (although these have the potential of drying out and becoming messy.

why do some people hate raisins in muffins?

Published August 10, 2009 by Nancy

I hope you didn’t come to this blog hoping for an answer to that question. I meant it rhetorically - as in Why on earth do some people hate raisins in muffins?

The only people who have an excuse are the ones with sensory issues. That makes sense to me.

To people with mouth sensitivities, putting the crumbling dry texture of the muffin with the wet, squishy texture of raisins is EEW!

But what’s the excuse of those other non-raisin people? And who are they?

My son has sensory issues, so when we go visit Nonna and the cousins, she makes Muffins Without Raisins.

I have tried to get into them. Chew, chew, chew, absolutely no excitement. This is just bread.

My five-year-old nephew can’t stand it. He takes a mittenful of raisins and tries sprinkling them on top of the muffin. When they tumble off, he takes individual raisins, pokes them into the muffin with his tiny fingers, and looks balefully at Nonna.

I met my first raisin-muffin-hater when I was on my way to Peru with a group of North Americans to do aid work. In the prep meetings beforehand, a co-teammate actually refused a muffin on the grounds that it had a raisin in it, and raisins were disgusting. I shook my head. Do you have any idea where we are going?

Raisins save muffins from breadhood. So do cranberries and blueberries.

Without them, why bother?

from The Sensory Team Handbook: Building Up From the Basement

Published June 13, 2009 by Nancy

You can think of the brain-body as a house that is you.The basement of your house is your senses—sight, hearing, taste, smell, touch, muscles, and gravity. To have a strong brain-body, you need strong nerve networks in your basement.

The first floor of your house is your physical activity skills (such as throwing a ball, writing, or running). This floor depends on strong senses in the basement.

The next floor up is your brain skills (such as reading, thinking, talking, and controlling anger). These brain skills work well only when your physical activity skills (first floor) and your senses (basement) are strong.

All of these floors support the attic of your brain-body house. The top of the house is your school skills. School learning and social behavior depend on your brain skills, which depend on your physical activity skills, which depend on a foundation of strong senses.
Why do learning and behavior at the top of the house depend on strong nerve networks all the way down in the basement? It comes down to safety. Only when you feel that your house is safe and solid will you want to climb up to the roof.

from The Sensory Team Handbook: Volume Control

Published June 12, 2009 by Nancy

Just like headphones, your nerve networks have a volume level. If music is too soft or too loud, then you can’t listen to it. You strain to hear it, or you pull off the headphones in pain. The same is true for your senses.

If the volume is too low, then your nerve networks are under-sensitive. Your brain-body can’t feel things much, and you want to turn the volume up. This can make you feel zoned out, or irritable and bouncy.

If the volume is too high, then your nerve networks are over-sensitive. Your brain-body feels everything too much and you want to turn the volume down. This can make you feel anxious and afraid.

Over-sensitivity and under-sensitivity are a big part of sensory processing. The same person can have both under-sensitive and over-sensitive senses.

If you have had over-sensitive or under-sensitive senses all your life, then you have probably learned ways to cope with these problems.

For example, if your senses of hearing and gravity are over-sensitive, you probably don’t go to movies because of the loudness, darkness, and dizzying action. If your sense of taste is under-sensitive, you probably  put salt and spicy sauces on your food so you can taste it.

e-courses from SPD Foundation

Published April 17, 2009 by Nancy

Dr. Lucy Miller, director of the SPD Foundation and the Star Center, and coauthor of the very popular Sensational Kids, is preparing some e-courses on sensory processing disorder.

It’s being called the SPD Learning Campus.  There are about four hours of training in total, covering all the basics of sensory processing and some tips from the experts. CEU status is pending but is expected.

The courses will be interactive and will features videos of real children in real situations. Dr. Miller is one of the course instructors, and Carol Stock Kranowitz is scheduled to appear as well.

is there such thing as sensory processing disorder?

Published March 31, 2009 by Nancy

Quackwatch has an article on sensory processing disorder (SPD) entitled “Why ‘Sensory Processing Disorder’ is a Dubious Diagnosis.”

The authors says there is no such thing.

I read the article. Although grammatically well written, my editor pen was twitching.

Here are my editorial concerns for the author.

1. Define entity.

This is important. For the author (a pediatric neurologist, according to Google), a medical issue is a entity when it has been tested and proven to be a thing.

How? The author doesn’t say. He just says SPD studies are flawed, but then he doesn’t go into detail. What is lacking in these studies is your and my guess.

He says he found the studies too small, with too much observation and anecdote. Fine. But what do these studies need instead? That information is missing.

And are learning disabilities, ADHD, and Asperger Syndrome entities according to his definition? The author mentions them as if they are entities. Yet many specialists have doubts about LD, ADHD, and ASD as entities. There are too many different kinds of each. Some respond to one kind of treatment, others don’t. Some improve with age, others don’t. In some respect, these disorders are just groups of symptoms lumped together and given a name.

The author doesn’t seem to have the same entity concerns with LD, ADHD, and ASD as he does with SPD. See #2.

2. Define distinct disorder.

The author says that most of the SPD research has been on ASD, LD, and ADHD kids (instead of on “normal” kids). He says these kids are known to have “sensory issues” so they shouldn’t be considered to have SPD. Instead, “sensory issues” should be considered part of the underlying condition they have.

Then why does such a diverse group of developmental disorders all have “sensory issues” as a component? If “sensory issues” were distinct, relevant to only one disorder, then it could be considered an effect of that particular disorder. But when it appears in several groups, then it is more than just an effect of an underlying disorder.

How important is distinctness? It’s not a criteria for the acceptance of many disorders.  ASD, LD, and ADHD aren’t very distinct among themselves. Many kids have more than one of these diagnoses.

I can’t figure out why distinctness is such an important idea for this author.

3. Define sensory issues.

What does it mean to say that ASD, LD, and ADHD kids have “sensory issues” but they don’t have SPD? Is SPD not the same as “sensory issues”? Are we not splitting hairs here?

4. Define chicken vs. egg

Certainly it’s true that if you have ASD, LD, or ADHD you are more likely than other people to have “sensory issues.” But it is equally true that if you have “sensory issues” you are more likely than other people to have ASD, LD, or ADHD.

Which comes first: the sensory processing disorder, or the learning/developmental disorder?

The author holds that the learning/developmental disorders come first.

I find it far more reasonable to hold that the sensory issues come first. After all, a broad group of disorders all share sensory processing difficulties. What do you think — are LD, ASD, and ADHD types of sensory processing disorders? See #5.

5. Define anxiety

The author believes (and includes “most” other pediatric neurologists with him) that anxiety causes “sensory issues.” He adds ( as an extra snub at the parents of kids who pay for SPD therapy) that kids with anxiety often come from families with anxiety disorders.

Certainly anxiety and sensory processing difficulties are linked. But correlation is not causation.

The anxiety/sensory argument is another chicken and egg question. See #4. Does anxiety cause sensory problems? Or do sensory problems cause anxiety? Or is there are snowball effect? And if so, what comes first?

My guess is that the sensory problems come first. Think about it. You have to be anxious about something. The CNS doesn’t just wake up one morning and decide, “Hey, I think I’m going to be anxious!” Bewildering senses in a child dependent on the senses for accurate information is certainly a reasonable cause for elevated anxiety! From there, it snowballs.

No, I can’t prove it. See #2.

6. Define standard

The author maintains that there isn’t proof that SPD therapies work. Most studies are observational. The gold standard of a double-blind study has not been applied. Therefore, nothing has been proven to work.

The medical establishment’s obsession with the “gold standard” drives me right round the bend sometimes!

Listen up. You can only do a double-blind study on treatments where the clinician doesn’t know what he or she is administering. So, drugs, supplements, and lotions - that’s it. For everything else, the clinician knows what he/she is doing. Moreover, so do the kid and the parent.

Translation: It is impossible to do an SPD study that meets the gold standard.

Another translation: The medical establishment’s standards are skewed in favor of pharmaceutical treatments.

The author advises families with anxiety issues to seek out standard therapies for these problems. Translation: drugs.

Quel surprise.

7. Define spontaneous improvements

First, the author holds that there are no adults out there with SPD.

I beg to differ. I am married to a fellow with significant sensory issues.  Because he was not diagnosed as a child does not mean he doesn’t have it. It just means that there are no stats on it. One should not confuse the absence of statistics or complaints with the absence of the issue.

Second, the author also holds that SPD kids improve with age. Since they improve with age, that means SPD is simply neurological immaturity.

Certainly these kids do improve with age. But is that true only because their neurological systems age? Or is it also because day-to-day movements, sensory exposure, exercise, and trial and error teach the kid’s senses over time to work better?

The brain is not a piece of hardware. It is more like software. It programs itself. It changes and develops.

Neurological development doesn’t just happen because the calendar date changes. It happens because of the body’s work.

Many ADHD kids seem to “outgrow” their issues in their mid-teens too. Does this mean that there is no such thing as ADHD? Or does it mean that ADHD and SPD belong in the same category?

Either you accept both as neurological disorders that improve with age, or you reject both as neurological disorders entirely. But not just one and not the other.

****

The article is a good example of the medical establishment’s very well-meaning circular arguments. It starts with a set of assumptions and accepts them without proof, then holds to an impossible standard of truth the concepts it is arguing against.

My opinion.

ADHD vs. sensory processing disorder

Published March 30, 2009 by Nancy

How easy is it to tell the difference between ADHD and sensory processing disorder (SPD)?

Not.

Both make kids bouncy and inattentive. Both can cause learning disabilities. Up to 50 conditions mimic ADHD, and SPD is one of them. Time magazine is calling SPD “the new ADHD” — missing the point that maybe it’s the old ADHD!

The problem with ADHD is that it is diagnosed by observation, not by tests. So it’s all in the interpretation.

A neuro-different kid with a grab-bag of behaviour and attentional issues is more likely to get an ADHD diagnosis than anything else. The diagnosing practitioner is usually very, very insistent.

Will a trial of stimulants to “prove” whether or not it’s ADHD?

Unlikely. Stimulants work for everyone. Ritalin is a more popular drug than opioids on college campuses–because it helps with all-nighters and long reports.

For anybody.

So ritalin isn’t “proof” of anything.

Also, stimulants have significant side effects, some of them long-term. Kids with SPD have heightened sensory responses and anxiety, so they can end up developing tic disorders and paranoia.

My opinion — meds are not a route to take unless you know the kid has ADHD and nothing else has worked.

So what’s the difference between ADHD and sensory processing disorder?

There is no short answer. But here are some points to consider:

1. SPD is still controversial. I don’t know why, but it is. Many psychs don’t “believe” in it. But most psychs believe in ADHD. Hence the high rate of ADHD diagnosis.
2. Occupational therapists who specialize in sensory problems are best at diagnosing SPD. In fact, they’re the only ones who really know what it is. So see the psych, then see the OT, then decide who’s right.
3. Just to make it more complicated, a kid can have both ADHD and SPD. Or SPD and LD (learning disabilities), which can look like ADHD. So having one doesn’t cross out the other.
4. Was your kid grouchy as a baby? Did the colic never end? This suggests a possible sensory problem.
5. Is your kid left-handed or no-handed? Big clue. SPD kids often have handedness issues.
6. If the kid does not have a learning disability, then lean toward SPD. ADHD is a learning disability condition. It’s probably not ADHD if school grades are good and attention for things he/she likes is fine, even if he/she has the behaviour of a gibbon and a mind perched in a different galaxy.
7. Consider sensory integration programming, regardless.It’s extremely helpful to ADHD kids, even if they aren’t classic SPD.

the museum meltdown 2

Published March 3, 2009 by Nancy

Well, weren’t we the model family at the science museum last week!

No meltdowns, no yelling, no frustration.

Sure, we had to spend an inordinate amount of time at the visual game-maker exhibit. But heck, we were there early, and there was nobody in line. We did all the other stuff too.

What was remarkable was that there was no fuss. Just cooperation and enthusiasm.

A miracle, maybe. But I’m attributing it to six intensive months of neurofeedback.