What is Sensory Processing Disorder?

Recently I have seen a rise in the number of articles, Facebook posts, and even tweets claiming to define what Sensory Processing Disorder is. This should be good news, and it is -- mostly.  But, some of them are full of misinformation.

Although I am thankful that anyone wants to help spread awareness, it frustrates me personally that these people could very well be doing more harm than good. I have dedicated such a large portion of my life to spreading awareness that will hopefully benefit kids like mine all over our country and arguably the world, that I would really like to see people get good, solid and accurate information. Wouldn’t you?

It is with that goal in mind – the goal to educate and help – that I am taking my personal stab at answering the increasingly popular question, “What is Sensory Processing Disorder?”  My answer, and this article, will be specifically geared towards helping parents with SPD kids prepare a response for the dozens of strangers (and even family members) who might stare or judge us every day.  We are on the front lines of this disorder, and I believe have the highest stake in making sure that the message being sent about Sensory Processing Disorder is complete and accurate.

Now, I’d like to start with a few myth busting points before we go any deeper so we can all start fresh.

SPD is on the Autism Spectrum” or “SPD is a mild form of Autism” – FALSE. Although a significant portion of kids with ASD do have sensory issues (estimates range as high as 85%), the opposite is not true. Many children with SPD do not have ASD. So, to recap, SPD is NOT on the Autism Spectrum.

They are trying to get SPD added to the Autism Spectrum in the DSM” -- FALSE. The work being spearheaded by the SPD Foundation and Dr. Lucy Jane Miler is to get SPD recognized as a ‘stand alone disorder’ in the DSM-IV. You can find more info on their site by clicking here.

SPD just means that a child doesn’t like loud noises” – FALSE. SPD is not just a single symptom, nor is it about 'sensory preferences'.  Children with SPD have sensory differences severe enough to affect their social and academic development.  It is much more complex than 'not liking loud noises'.  And, although children with SPD can avoid sensory input, they can also seek sensory input.

SPD is the new ADD” – FALSE. I am not going to combat the theory that we as a country (or society in general) have become increasingly consumed by labels, because I agree.  However, I would like to say for the record, Sensory Processing Disorder is real.  Just ask any of the thousands of families that read my blog every month, this is a true health issue that needs to be recognized so that these children and families can get the help they need.

SPD affects all 5 senses” -- INACCURATE. This is probably my biggest pet peeve. We have 7 senses – SEVEN SENSES!! Touch, Taste, Smell, Hearing, Sight, Vestibular and Proprioception. If you are reading anything (blog, tweet, Facebook, article, newspaper, etc) and they say that SPD affects 5 senses – STOP reading. If they do not know at a minimum that there are 7 senses, this person is not an expert.

Now, let’s get to a real and workable definition.

The Sensory Processing Disorder Foundation’s website says the following:

“Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.”

Let’s break that down so that we can get to a simple, easy to remember and crazy-easy to understand definition.

“…the way the nervous system receives messages…” -- this is referring to the messages received from all seven senses and how they are conveyed to the brain through the nervous system. The brain is the key component to the nervous system, as that is where the ‘processing’ occurs. By ‘processing’, we are in very basic terms referring to whether or not the brain ‘understands’ those signals. When the brain misinterprets the meaning of those signals, and can’t process them appropriately, it leads to an inability to turn them into appropriate motor and behavior responses.

“…appropriate motor and behavior responses…” – 'appropriate' here refers to the assumed way that a child should respond – if something is too loud, they should pull their ear back, if something is quiet, they shouldn't scream it is too loud. The word ‘motor’ refers to a physical response – how your body moves as a result of the information from the brain, and then ‘behavior’ how the child continues to respond (over or under reactions). Example: Loud unexpected BOOM! Kid cringes and covers his ears (motor), then screams and runs away (behavior).

I want to pause here to be sure that everyone knows there are three types of Sensory Processing Difficulties: Type I; Sensory Modulation Disorder, Type II; Sensory Based Motor Disorder and Type III; Sensory Discrimination Disorder. For the purpose of this post, which is simple understanding of SPD and increased ability to communicate what SPD is as a way to help spread awareness and understanding for our children, I am not going to go into them. You can find their definitions here.

Now that we all are on the same page with the formal information, let’s move on to the analogy that I find most helpful when discussing SPD with others, from the SPDF’s website:

“A. Jean Ayres, PhD likened SPD to a neurological ‘traffic jam’ that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.”

Are you familiar with A. Jean Ayres? She is credited as being the pioneer for Sensory Processing dating back to the 1960’s. Her work is the foundation for current research and the modern understanding of SPD. More information on her here.

Now, on to how you and I can actually use these definitions for something useful: A 30 second sound bite.

This is what I use most often when talking to those around me who really don’t have the attention span to hear more, or when I have a time limit like when I am being interviewed (Radio/TV where my total spot might be 2-3 minutes, click here for an example).

It is also super helpful at the grocery store when my son’s need to touch everything on the aisle results in a virtual disaster or when he insists on swinging from the railings at the checkout counter. Or, at the playground when he seems to be consumed with pushing down some sweet and small little girl simply because she is too close to him, or even at my home while celebrating some holiday where my son is wound up like a top and crashing into everyone - head first into their butt -- while giggling nonstop.  Like me, I trust you will find many uses for the 30 second sound bite.  Here it is:

“Sensory Processing Disorder is a neurological disorder that is like a virtual traffic jam in the brain. The information from all seven senses is misinterpreted which causes my child to often act inappropriately.”

Obviously you don’t need to memorize my version – and it can be shorter or longer as necessary -- and said in many different ways.

The key points that are important to communicate when talking to someone about SPD are:

1. SPD is a neurological condition (not a behavior issue)

2. There are 7 senses

3. Information gets misinterpreted

4. Sensory issues cause my child to act the way he/she does

I feel when I cover these four areas I am most likely to accomplish my two main goals when talking to anyone:

1. Help them understand my child and his behavior

2. Spread SPD awareness

I hope that you find this information helpful for both your practical understanding of what Sensory Processing Disorder is and so I can add you as another person who can help me combat the intensely mis-informed, however well-intentioned, people out there.

Our kids need understanding – which starts with making sure we are providing solid accurate information people can use.

So, here’s to all of you raising a SPD kiddo and spreading the word!
Hartley

For more information on Sensory Processing Disorder I recommend the following books:
 
The Ultimate Guide to Sensory Processing Disorder by Dr. Roya Ostovar
Sensational Kids:  Hope and Help for Kids with Sensory Processing Disorder, by Lucy Jane Miller Ph.D
The Out of Sync Child by Carol Kranowitz

19 comments:

pr0udmom0f3 said...

I've shared the link on my FaceBook group for parents with silently disabled children and those that support us and our kids.

This is BEAUTIFULLY written.

Chynna said...

Thanks, yet again, for helping people understand these point, Hartley. I share your frustration and make sure to say the SAME THINGS whenever doing any sort of discussion on it.

I hope people check out all the links too.

Chynna
www.lilywolfwords.ca
www.the-gift-blog.com

Kris said...
This comment has been removed by the author.
Hartley said...

Thank you all for the kind words and for sharing this link! Here's to spreading awareness!!

Hartley

Stacey,momof 2 said...

This is a marvelous, and well written post!!!!!
Thank you for getting the clear message out!
YOU ROCK!

missykade said...

Love, love, love this! With you permission could I post post this on our blog?

You're amazing!
http://lucasjourneyspd.blogspot.com

Rebecca at Healthy Green and Frugal said...

This is very helpful. Thanks, Hartley!

Caitlin Wray said...

Excellent article Hartley, just excellent. I especially like your 4 key points when trying to sum up the condition for mass consumption at the grocery store etc. I have committed them to memory: neurological, 7 senses, misinterpreted, causes symptoms which look like behaviours. I like to emphasize the last bit about symptoms looking like behaviours when I'm talking to people, so they know that when they see kids 'misbehaving' it isn't necessarily behaviour at all, it may be a symptom of a geniune condition, like my son's.

Add 'em all up and you get MORE AWARENESS and LESS JUDGEMENT! Yay!

Caitlin
www.welcome-to-normal

Marc said...

Great post. I linked back to it from our blog as my readers (and everyone in the field) should have this type of useful working definition and detailed description at their fingertips!! Would love to add the book by Frank Belgau to your reading list as well. Title is "A Life In Balance." The book is right on this topic as are the other books you noted. Thanks again and I look forward to reading more.

lurahloo said...
This comment has been removed by the author.
lurahloo said...

Wow, I have been reading your site for a few weeks now as I have a sweet boy with SPD.

But something about the way you worded things led to a sudden awareness: Things I thought were quirky in my daughter may actually be Type I - Sensory Modulation Disorder!

My son is pretty much dealing with Type III - Sensory Discrimination Disorder.

I feel like I just took off my glasses and see things more clearly now.

Thank you for caring enough to share.

Laura

Lea Keating said...

Fantastic article Hartley - can't wait to share.

All Together We're Better said...

Great information! I'll be sure to share it!

Anonymous said...

this tells the important points of spd ive posted this on facebook with the comment, welcome to my daughters world!!!!!
Its hard to get a diagnoses in the uk but i know my daughter has this.

Brenda said...

I've been saying this more and more lately, too - misinformation all over the 'net! SO glad I found this post. I've been looking for a good description. It is a huge part of our life.

vonsfabshoes said...

Thank you so much. I had to share this as well on my FB for my family and friends. Well written and I'm hoping it makes it consumable for them now.

I'm so happy to have found your blog. I've been struggling feel very lonely with this with our youngest son.

childledhomeschool.com said...

Thank you so much for this (your whole blog, actually).

My son hasn't been officially diagnosed yet, as I haven't really seen a need (labels and all you know)For the past 6 years I just assumed he had ADHD, and I knew I would NOT put him on meds and now we homeschool-so it just didn't seem important to have that label.

But once I looked into SPD a couple of months ago, it was like "OH hey-that's my kid!!!!" LOL

I'm waiting for his well-child visit to get an official diagnosis. And hopefully some OT to help teach me and him both how to deal with and handle is behavior and reactions to things.

It's nice, since I'm still learning about SPD, for someone who has known about it longer to break it down into something simple I can tell other people now.

Thank you again.

chachi said...

Thank you so much for the information in lay mens terms. I am a grand mother of two boys who have SPD. I always thought it was a behavioral issue and I couldn't understand why the 4 year old doesn't listen or why he acts out with throwing toys or hitting for no reason. The 2 year old is still on baby food. When my daughter tries regular food, he gags and throws it up. He is just starting to say a few words which we are ecstatic about. I feel better and more educated about SPD.

SAPsMaMa said...

I've never heard of this before, thank you for sharing. I'll definitely want to look more into it and help spread awareness.

I'm a new follower, I got a link to your page from Making Time for Mommy blog! I'd love if you check out my blog as well, SAPsMaMa Natural Parenting and Green Living.