SPD is not a “dubious diagnosis”

There I was, spending a quiet evening at home, munching diligently on some freshly-baked oatmeal cookies when my eyes scanned the internet headline “Why ‘Sensory Integration Disorder’ Is A Dubious Diagnosis.” The author of the article, Peter L. Heilbroner, MD, PhD, states that Sensory Processing Disorder (or Sensory Integration Disorder, as it’s also known) is not a real condition.

cookies yay

As I began to violently shovel oatmeal cookies into my mouth, I read and re-read his article over and over. Below, I have written a counter-argument, because I believe Sensory Processing Disorder is real and those of us with SPD deserve advocacy. Since I am an adult with SPD, I will do the advocating!

 

His argument:

“Many children with autism have “sensory issues” such as oversensitivity to touch. Similar symptoms occur with other neurodevelopmental and behavioral problems (including attention-deficit/hyperactivity disorder) and anxiety disorders. However, the prevailing medical view is that “sensory symptoms” are a nonspecific indicator of neurodevelopmental immaturity rather than a distinct disorder. Such symptoms can also occur in children considered normal.”

My argument:

Yes, many children with autism do have sensory issues, as do children with various other neurological disorders. And yes, sensory issues can come about throughout early childhood as the brain is still developing and growing, and this is totally normal.

But, when children are struggling for long periods of time with basic sensory-related acts, it’s time to question whether or not that child is neurologically immature, or if there’s an actual problem with the child’s neurology that needs fixing.

 

His argument:

“Moreover, except in cases of autism, these sensory symptoms are virtually always outgrown. Do you know of any non-autistic adults with the type of “sensory problems” said to occur in SID? I work in the largest neurology group in my state. Although we see every conceivable neurological complaint, I have yet to hear from my colleagues of even one case of “SID” in an adult. In my experience, children who had been diagnosed with “SID” were overly anxious and come from a family that includes others who suffer from an anxiety disorder.”

My argument:

First thing’s first. Ok, I’ll admit it: those of us with SPD are usually very anxious people. But why are we so anxious? Oh yes, it’s because our sensory difficulties make ordinary life tasks difficult and anxiety producing. I know for myself, anxiety and sensory issues are two separate things, but SPD can make my anxiety worse, and anxiety can make my SPD worse. However, I rarely confuse the two – or smush them together as one – because their symptoms manifest very differently.

Second, just because you haven’t personally met an adult with a sensory disorder does not mean that these people do not exist. I’m telling you – there are thousands of adults with SPD, many of us are living with no diagnosis for various reasons. Some of us struggle so immensely with our SPD that we cannot live normal lives. Thanks to the internet, many adults have reached out for help and found support. They are startled to find that their symptoms are shockingly similar – not just regarding anxiety, but symptoms such as extremely poor coordination, or severe distress around bright lights, or the inability to wear certain fabrics, or feeling ill around certain odors. These people are not autistic, yet they suffer from severe sensory issues.

hello hi im here

 

His argument:

“Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety.”

My argument:

Am I “neurodevelopmentally immature?” Gee, I hope not. I like to think of myself as “neurodevelopmentally unique or divergent.” The different wording makes it sound less like I’m to blame for my own neurological problems, and it gives me more hope that I can manage my life better.

Costly research and interventions have helped change the lives of millions of people with neurological disorders. Without research and treatment exploration, people living with conditions such as autism, epilepsy, PTSD and other disorders of the brain would still be receiving inappropriate treatment, or none at all.  Some of these conditions were completely misunderstood and stigmatized until science  – and humanity – caught up. I want the same to be said for Sensory Processing Disorder.

Here is a link to a recent study that found quantifiable differences in the brain structure of children with Sensory Processing Disorder. This is the first time science has found biological evidence of SPD:

Breakthrough Study Reveals Biological Basis for Sensory Processing Disorders in Kids

 

His bottomline:

“Most children develop and improve their behavior spontaneously. Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety. Well-designed scientific studies are needed to determine whether or not SID is a definable disorder, and even if so, whether the treatments currently prescribed are effective or necessary. Until studies along these lines are conducted, the diagnosis of SID should prompt a healthy degree of skepticism. Working with a friendly and relaxed therapist can be calming to children. I believe that families with children with behavioral or anxiety disorders would be better off getting standard treatment than investing time and money in unproven approaches.”

My bottomline:

Don’t rush into investing time and money on treating sensory issues before you truly know if sensory issues are the problem. Anxiety treatment is not the same as sensory treatment, but treating anxiety can help a person with sensory issues. Visit an Occupational Therapist to see if what you’re experiencing is SPD or something else. It’s rarely a good idea to self-diagnose and treat. An OT will be able to provide a diagnosis and treatment plan specifically designed to help sort out sensory issues.

Most importantly, adults with Sensory Processing Disorder do exist, and SPD is definitely not a dubious diagnosis.

 

Here is the link to the article by Mr. Heilbroner if you wish to read it in full:  http://www.quackwatch.com/01QuackeryRelatedTopics/sid.html

What are your thoughts on this topic?

-Kelly

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13 comments

  1. I have not personally met the Queen of England, therefore I do not believe she exists. She’s probably a robot. We should probably stop paying her. (My mom says no one can tell when I’m being sarcastic, so I’m telling you that I’m being sarcastic.)

  2. Gee wiz! seriously?! My first thought is to shoot him, but thats not very nice, nor is it helpful! In that case then, maybe if we all send polite emails of our personal stories of SPD and how it effects us on a daily basis along with all the research, it would help! In other words: AD-VO-Cadcy.

  3. The quotes from Heilbroner made me so furious I actually had to stop reading because I wanted to smash something. But then that would have been too loud for my ears and I’d have probably lost my grip as I might not be able to tell how hard I was holding it, not that I could possibly have SPD obviously. Your responses are fantastic by the way.

  4. I’m posting the same comment here as on the 21andSensory blog as she shared your above post today. I’ve been involved in SID or SPD as a researcher and now drum circle facilitator since 2001. I became personally affected by SPD with sound & visual stimuli in the years following a 1992 brain injury and hydrocephalus. In 2002, I undertook a study on sound sensory processing using a metronome, where I showed how “sound patterns” largely determine how sound is processed in the human brain.

    On the favorable side of sound, the Mozart Effect showed positive effects when sound is melodic. On the far negative side, sound (and also visual) exposure remain a critical tool in information extraction and breaking the will of prisoners. Just ask our military and CIA about these methods. As for touch and motion, car and sea sickness are well reported in medical journals. Similarly, information on cognition and the many related cognitive disorders is well published. But for political reasons, the NIH and government have allowed Western Medicine to avoid reporting on the connection between cognition and behavior, and sensory triggers in individuals with brain injury and neurological disorders, while there are numerous published studies on the connection between cognition and behavior, and medical conditions citing both cognitive and cranial nerve deficits – while avoiding sensory processing dysfunction which would SEEM to follow deficits. Similarly, one would expect an individual with a knee muscle or ligament deficet to have impairment in walking or running. One follows the other. However, in the brain, Western Medicine would have us believe sensory processing in the brain to remain normal – which is an idiotic assumption!

    In Sept. 2015, I spoke at a Sovereign Health Center for Addiction on the use of alternative medicine in addiction disorders, as SPD and cognitive accessibility also occur in drug and alcohol addiction. Cognitive accessibility, as you likely know, are a set of protections and accommodations which can help to avert problems with adverse sensory exposure. However, it is over-run by politics, and we’re not seeing really any public or private protections. Perhaps the worst of this occurs with your own TV service in the unhealthful sound coming from commercials – and while we pay for it too!

    In 2013, purchased the domain CognitiveAccessibility.org . I’ve encloses a link to one of my blogs on SPD and sound sensory processing, where you can read about my efforts – and there are links to my wider efforts in this area.

    As for Quackwatch, this group has been outright refuting most therapies under alternative medicine, and thus, has an interest in preventing insurance reimbursement and any competition from the healing arts. As you have likely read, similar efforts were done with medical cannabis.

    You will also find a link to my 2002 SPD study on my web site. We need to join our efforts to advance SPD and related disability rights challenges. Best, Stephen https://dollecommunicationsblog.wordpress.com/2013/02/05/sound-sensory-dysfunction-in-brain-injury-neurological-disorders-and-mental-health-examples-metronome-study/

  5. That guy has no idea what he’s talking about. I’m also a sensory adult. I exist. My sensory stuff gives me anxiety. Like, trying to find something appropriate to wear to work, but suddenly all the work-appropriate clothes feel icky. And then you’re running out of time to get dressed and you don’t want to be late for work, but you need to look a certain way and not just go in your pajamas because your workplace has a specific dress code that includes “not the pajamas you’ve been sleeping in for the past week.” That’s what causes my anxiety. Not the other way around.

    Another awesome post as always, Kelly!

  6. I agree with this 100%. I have not been diagnosed with SPD, but have Fibromyalgia and one of the symptoms is heightened sensory issues. My anxiety can be separated into two categories, regular anxiety and anxiety caused by overstimulation. People who live with chronic pain often suffer with sensory processing issues because the central nervous system is in a constant state of alert, so multi-sensory hypersensitivity becomes a coexisting condition. While this is probably not the same as SPD, it is a common issue for many in chronic pain…hence, this doctors view is very limited and narrow minded.

  7. SPD is not very well-known in fact by most of the “normal people”.
    Unlike Autism, Asperger, ADHD, etc. when we say SPD, people are completely lost. And therefore most of us with SPD are often (only) considered as an annoying, weird, difficult children while we’re actually suffering from sensory issues.
    I remember the 1st day of elementary school my homeroom teacher told my mom that “your daughter is naughty and incurable, she’s disturbing us, and I guess she just needs… hmm… special cares”…
    Ohhh poor mom 😥
    So here I was, kind of transferred into a sort of “class” to stay with other kids with various different situation such as Autism, Asperger, ADHD… etc.
    The ignorance of people hurt a lot…

    And the anxiety part, that’s new to me! It explains why I’m always a bit over-reacted in front of anxious situations… >_ from Taiwan 🙂

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