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 8 senses – EIGHT SENSES!! Touch, Taste, Smell, Hearing, Sight, Vestibular, Proprioception and Interoception. 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 8 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!
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