Is Sensory Processing Disorder Real?

SPDSensory Processing Disorder, or SPD, is quite the hot topic in the pediatric world these days. Since occupational therapists are the ones that these children are referred to for therapy, I often get a lot of questions on the subject. Here are just a few of the questions I receive on a frequent basis:

1. What is Sensory Processing Disorder?

In the simplest of explanations – a person has difficulty processing and interpreting sensory information (i.e.: smell, hearing, vision, taste, touch, and movement). This in turn impacts how they respond to sensory input.

For example: Imagine your body has trouble processing touch input. A light brush on the arm feels like a million needles. Could you ignore that? Of course not, it would drive you crazy! Not to mention the fact that you would begin to feel anxious as to when the next touch experience would come. Locked in a “fight or flight” response to sensory input, life would most likely be a constant struggle for you.

That’s just one example of Sensory Processing Disorder. One person might be over-responsive to sensory input, while another might be under-responsive. Everyone is different. If you dive deeper into the diagnosis you can also get into sensory modulation disorders, difficulty with praxis, and all of that good stuff. But for now let’s just speak of sensory processing in the most basic of terms.

I like to tell people that we all have some sort of sensory “quirks”. Some people can’t stand wool sweaters or touching something slimy in the kitchen sink. Someone might require complete silence to study, and another might need to jog every morning in order to stay focused at work.

So what’s the difference between a sensory preference and SPD? With SPD, the sensory issues impact your ability to function or participate in daily activities. If your shirt bothers you so much that you can’t even get dressed in the morning, you’re going to have a hard time keeping that office job of yours.

2. Is Sensory Processing Disorder Real?

That depends on how you phrase the question. Is SPD a real condition? YES!! A thousand times YES!  If you ever want to disagree with me on this then come on over to my clinic and I’ll introduce you to some of my friends.

However, is SPD an actual diagnosis? Eh, not definitively…many professionals still refute it. Some groups are pushing to get SPD an official spot in the DSM-V, (The Diagnostic and Statistical Manual- the manual used for diagnosis of mental disorders) but as of now it’s not looking so good.

3. What is the controversy over Sensory Processing Disorder?

This is a cop-out to say, but the phrase “we need more research” gets thrown out a lot. Apparently people feel as if the evidence is too anecdotal, and more intense clinical research needs to be done. See question 4 for more on this.

The diagnosis is also considered “vague.” Since it encompasses so many symptoms, people feel as if it’s just another label thrown at a kid.

As I said before, it’s not actually in the DSM. Therefore, those who know nothing about the diagnosis (and aren’t willing to learn anything about it, either) might automatically dismiss what people try to tell them. This includes the following important groups:

-Doctors:

There are some doctors that refuse to acknowledge SPD, and make their stance on this known to anyone that will listen. They don’t see the medical validity to the diagnosis and often say to a parent “they’ll grow out of it.” (This phrase drives me up the wall, by the way.) I’ve even heard of a doctor reprimanding a therapist colleague for bringing the subject up at a meeting.

-Occupational Therapists:

Some OT’s don’t even believe SPD is a real diagnosis. They criticize sensory integration theory and look down on those that practice it. Sad to say, but we are often looked at as the “fluff” of occupational therapy.

-Insurance companies:

Some insurance companies specifically exclude coverage for sensory integration therapy, claiming it is “unfounded in research” and “experimental therapy”. That last one makes it sound like OT’s are mad scientists, doing some crazy experiments on kids. It also makes it very challenging for a parent to receive services for their child.

4. Why is there no research to back it up?

Well, there is research out there if you look for it. The problem is that a lot of it is based on “case studies”, meaning a research paper on one person’s progress.

In the medical world, in order to have a quality, well-respected clinical trial, you have to have a large sample and a control group. This means gathering a lot of people with the exact same symptoms and comparing their progress against a control group of people with typical sensory systems.

How in the world are you going to do that with this diagnosis? It’s darn near impossible. Every person presents differently, and there are often other diagnoses that coincide with the diagnosis of SPD, muddying up the entire research process.

Another problem is that the majority of the data collection and screening process for SPD is based on parent report. Parents’ opinions of their children are subjective, to a fault at times. I’ve had a client that I knew was a huge sensory mess, but when I got the paperwork back from the parent, everything they marked on the form scored in the “typical” ranges. It was maddening.

Also, there are not a lot of universal “interventions” to track. Therapists don’t all practice sensory integration in the same way, so how to do know what is working or not? (Refer to my explanation of therapist preferences HERE for more insight on this.)

Don’t forget, we OT’s also look like crazy hippies with our brushes, swings, and squishing people with weighted things. (This is another awesome quote from a parent about OT, and I kind of love it.)

5. What do I think about SPD?

So glad you asked. I happen to be one of the most skeptical people ever. Sometimes I find it hard to believe that I am in a profession that many people like to refute or say is nonsense. But yes, I know SPD is a real condition. I also know that therapy helps improve not only the child’s life, but their family’s as well.

On the flip side, I do feel that the word “sensory” is thrown around with a bit too much laxity. Some people refuse to believe that behaviors are not “sensory” related. Others ignore a true ADHD diagnosis in lieu of purely “sensory” intervention.

All in all, I think we need better screening and education regarding the topic of SPD. And while I work on that, could someone get to work on those amazing clinical trials that will shut everyone else up? Thanks

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About TheAnonymousOT

Pediatric Occupational Therapist
This entry was posted in Lessons Learned, Occupational Therapy, Therapy Process and tagged , , , . Bookmark the permalink.

12 Responses to Is Sensory Processing Disorder Real?

  1. Joyce Sullivan says:

    I have been an occupational therapist for 38 years and I think the mistake people make is thinking that sensory modulation problems can stand alone as a diagnosis. In my experience children have a primary diagnosis such as anxiety, adhd, ASD with features of sensory modulation problems. The American Academy of Pediatrics has a position statement on this subject.

  2. denise b says:

    A neurological disorder created and defined by OTs is suspect on its face. OTs do not have the training to diagnose, let alone to invent new neurological disorders. I think you should leave diagnosis and definition of conditions to the neurologists, and do what your training has equipped you to do.

    • Julie Colantuonio says:

      Wow! Now your not being just a little arrogant? My son’s OT’s have helped him more then any neurologist ever could. Forgive me if I think someone who spends more time with my child than 45 min is who I am going to give credence to.

  3. dee.johnson76@gmail.com says:

    Hi. I’m doing research on SID/SPD for my Child Development course. This was an interesting read. Might you be able to point me in the direction of more information on this – opposition/differing opinions on treatment, diagnosis, etc? (for those that say “google” it, I am. Being that the writer is an actual OT, I figure I’d ask directly.) Thank you.

    • A lot of the “opposition” I’ve come across has been from doctors that refuse to acknowledge the diagnosis, as well as insurance companies that refuse to pay for treatment. Not sure of any literature that directly opposes this intervention, but there seems to be a lot of inconclusive or small study research that people don’t put much stock into. If you find something, could you send it my way? I’d love to read it. Best of luck with your research!

    • nikki says:

      http://www.spdfoundation.net they have everything you need to know about SPD. I can also answer for you because I have SPD and have been doing research on it myself.

  4. maggie r. says:

    Can only say that as a parent of a child with sensory processing issues, this makes me want to scream. At the suggestion of a relative who teaches child development, I started to read Temple Grandin’s The Way I See It, and one of the first things she says is not to get hung up on diagnoses. And I’m not, but you will get nowhere trying to get help for a special needs child without a medically recognized diagnosis (Grandin’s mother was able to pay for her therapists out of pocket). As far as I can tell as a layperson, the diagnoses are not terribly meaningful and perhaps counterproductive, but everything hinges on them

    When I look at the symptoms of ODD and hyperkinetic disorders, I pray that some doctor will be able to squeeze my child into one of those categories. Certainly, if I have to shell out the $3K I’m being asked to pay for an evaluation, if the premise is that SPD is always a symptom of some other diagnosis, then I’d better d***ed well walk out with a medically recognized diagnosis. A recent brain scan study indicated that there was a distinct pattern to SPD children’s brains that is unlike ASD, but that study needs to replicated on a larger scale, and who’s going to pay for that? Corporations call the shots on most of the research in this country, so I’m pessimistic, and parents like me will struggle with kids who fall between the cracks of diagnoses.

    • DeAnn says:

      Amen!! I am so tired of all the medical red tape!! To put my 2 cents in as well-there are wayyyyyy to many, doctors, nurses, teachers, coaches, grandparents (I could go on and on)-who DO NOT have the training they should have for our kids. A good smack on the butt is not going to help!!

  5. nikki says:

    First of all I have SPD was diagnosed by my neurologist when I was 7 and I am 31 now. Back then it was sensory integration dysfunction.

    YES IT IS REAL! I am tired of people saying it isn’t real when they know nothing about it or have yet to read up on it. I go through a lot and its not easy. When I tell people how I don’t like turtle necks or tags in shirts or seams in socks, they respond by saying so do a lot of people, but what they don’t understand is that someone like me with SPD its different the sensation is hightened more and can pose as more of a problem. If the seam of a sock is on the bottom of my feet it bugs me to no end and can ruin my day and throw me off. I am over responsive and I have learned a lot more about myself So please be mindful and actually talk to people who have it before assuming it is not real.

  6. my grandson has spd…and man has it been hard getting the testing done and into ot…and it’s hard to find anyone who really knows about it. I am constantly explaining…when we go out to eat, i ask for a table in a corner, away from people…at church, i explian what to expect…etc…i even tell them the symptoms of his overexposure and how to tell…but in all of these places..while some peple help, others glare…’bad kid’ look in their eyes…and i just think–if you only knew….i was skeptical…until my daughter and her husband mov4d here….i mean i beleived them, but could it be that bad….oh yeah…i built a seonsory wall in the hall for him…we have ‘charcoal’ to color with as that is a feel he really ressponds to….we have paints, we do ‘swining time’ with him in a blanket….we bought him a swing for his room and a teepee to hide in when he needs to…they all help tremendously…and he is growing….and learning to cope…when he first got here he could not handle a touch on his skin..he has learned how to accept that…and realizes that deep pressure hugs are good…will even come up and want us to ‘spank’ him…poor kid….so we laugh and say no…and squeeze him etc……his mom will say d you need a spaking..when he is being bad…and if it’s misbehaving he say no and straighten up, if he’s having problem and needs some input he’ll say yes…lol…that’s wher that ‘spanking’ thing comes in…but sorry i just laugh and hug … a silly story, but one to shw you that he is learning the difference of what is going on in his body…and we are too…so do not tell me it’s not real

  7. Pingback: How to Tell a Skeptical Spouse Your Child has a Sensory Processing Disorder - Integrated Learning Strategies

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