LilaTovCocktail: Ingredients: one part NE Ohio; two parts politics; two parts media, and one part each: culture, family & the Jewish community. Directions: Shake well.

If you've never heard of Sensory Processing Disorder (SPD), you have now

4/21/09




My sister said something to me the other day, one of those things that stops you dead and makes you say, "Oh my god, she's right!"

What she said was actually commonplace: that most people don't realize how much a special needs child taxes a family's emotional and financial resources.

What was earth-shattering was the fact that she was referring to my situation. And she was right.

You can't tell from meeting them that my sons have Sensory Processing Disorder (SPD).

They're not "special needs" in the sense of having cognitive delays, language deficits or physical disabilities. In fact, they're unusually bright and creative.

But at their worst -- that is, at the moments when they're most overwhelmed by their sensory environments -- their behavior becomes disruptive and dysfunctional. They have meltdowns and tantrums, grow irritable, refuse to make eye contact, run away and even, at their most frustrated and overwhelmed, lash out with feet and fists.

To many people, they appear to be merely extremely ill-behaved boys. Some casual observers conclude that the problem is indulgent parenting. We need to be stricter with them. If we'd just punish them when they run around the store, they'd learn to stay at our side, we're told.

And that's how we know our children are not simply badly-behaved: no amount of reward or punishment can persuade them to behave the way we want them to when they're in such moments. Because they really aren't in control of this behavior. In the face of overwhelming physical stimuli, they respond from the autonomic nerve system, going quickly into fight or flight mode.

Here's the other way we know that our sons aren't spoiled, undisciplined, and disobedient: when you treat the sensory symptoms, the unwanted behaviors go away. You can do this by changing the environment or by desensitizing the child to the stimuli -- for example, the large echoing auditorium where S. often had tantrums became tolerable with the introduction of earplugs that reduced background noise.

The trouble is that it's hard to get people to recognize SPD and to convince the other adults in their lives -- grandparents, teachers, babysitters -- that accommodations, not punishment, is what's needed.

For one thing, few people have heard of it. SPD is sometimes called a "hidden" syndrome because it's not in the DSM-IV (although it's being considered for inclusion in the next DSM).

As a result, pediatricians don't look for it and insurance companies don't want to pay to treat it. (The diagnosis is accepted by the Diagnostic Manual for Infancy and Early Childhood Disabilities (2007) and Diagnostic Classification: Zero to Three: Diagnostic Classification of Mental Health in Developmental Disorders in Infancy and Early Childhood (2006).)

SPD was the topic of Marguerite Kelly's Family Almanac column in the Washington Post with the headline "Neurological Problems May Underlie Behavior":

This neurological problem is often inherited, affects one in 20 children and may wreck a child's behavior, her disposition and her relationships with others because SPD can make a child overreact -- or underreact -- to a sight, sound, smell, touch, taste, movement or pain. Her brain simply can't respond to all the messages it gets from the sensory receptors that are in her skin, in and around her mouth and in her inner ear, and this makes her act in ways that annoy others as well as herself.

Some SPD children don't know where their bodies are in space, so they are clingy or they hate to be touched or they stand too close to their friends. Others bite holes in their shirts, walk on their tiptoes, talk loudly but hate to hear loud talk from anyone else, or act like they've been bopped with a bat when someone has only given them a light pat on the back.


And on YouTube, here are more descriptions:









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3 comments:

lonestar April 26, 2009 at 8:02 AM  

I can very much relate to this, my three boys each have SPD as well as autism. Although it's possible to have one without the other, honestly for me it's hard to tell where one ends and the other begins.

Many of the "behavior" issues we deal with are really more due to sensory issues... and you're so right about the being judged as a bad parent even though reality is there is no reward or punishment that will make a difference. What does help is proper therapy, it just takes time.

It doesn't help that most people have never even heard of SPD, so posts like this are helpful. Thanks for a great post, and thanks for leaving your link at my site.

btw, love that first video with the cartoon guy :).

Samantha April 29, 2009 at 11:13 PM  

I just want to say that I grew up with SPD (it was called Sensory Integration Disorder back then, but I think it's the same thing.) I was diagnosed at 7 in 1991 and nobody had ever heard of it before, not even most of my doctors. There wasn't any books for my mom to look at and she kind of had to make it up as she went. I always found that just eliminating the sensation really quickly worked best. My brother poking me in the arm once would just be annoying, but three or four times and I'd start to lose control. The closest thing I can compare that sensation to is a panic attack. That noise/touch/smell etc. becomes all you can think about and you absolutely lose control of your behavior, of everything.

However, I wanted to let you know that I turned out fine and that your boys will too. As I grew older, I was better able to get a hold of what was going on. So the noise of someone turning on the vacuum might still scare me, but I'm able to figure out what it is and get calm again quickly. I think my symptoms also faded a little as I got into my twenties, or I've just learned to avoid triggering situations.

So sorry if this is a long comment, but I know you probably don't get a chance to hear from adults who've come through SPD (since it was rarely diagnosed until recently). I hope some of this helps. Best Wishes!

LilaTovCocktail April 30, 2009 at 1:23 PM  

Thanks for the feedback, lonestar and Samantha.

You're right, Samantha: I don't know any adults who had SPD as kids, and it was very encouraging to hear from you. Thanks for sharing your experience.

Actually, since I learned about SPD, I'm aware of my own susceptibility to sensory overload. When my oldest son's neuropsychologist suggested he keep a pair of earplugs in his backpack to use in certain environments, I opened my purse, took out a little plastic container of earplugs and said, "Oh, you mean like this?"

I'd been carrying them for years to use in warehouse-ish stores (like Sams Club), where the reverberation of sound made me irritable and worse, unable to think clearly.

My husband's family definitely has some SPD and ASD threads in its genetics. His sister has always had tactile aversion, and the year she was 5 and went to kindergarten she wouldn't speak a word in the classroom. The school had her tested, and she was otherwise fine. My dh spent the year HE was five alternating between rocking on a rocking horse and drawing the same picture of his house. Nowadays, people would say he was self-stimming and perseverating; but he outgrew that phase and because the extroverted engaged attorney/magistrate I know and love.

I definitely think early intervention is important, as is having a non-judgmental vocabulary to describe what goes on with our children.

But I really chafe against the growing pressure to pathologize every child whose development is atypical. Atypical children don't necessarily grow into atypical adults; and even if they do, many childhood atypicalities become valuable and attractive qualities in adults (e.g. artistic talen, or the facility to map out information in new ways, or the ability to develop solutions that are "outside the box").

Preschools in particular have become too rigid, too intent on herding everyone toward a narrow norm. They then insist that anyone who can't squeeze themselves into the norm, any 5 year old child whose development is atypical, be rushed off for assessment and diagnosis.

Just because something is atypical doesn't mean its aberrant. Or to say it in a way that's more familiar: "Different isn't necessarily bad."

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