temple grandin

The Forgotten Component of Autism

There is something about autism that I’ve been going over and over in my head for many years now. I consider it the forgotten aspect of autism, or should I say, the ignored aspect of autism.

I am referring to sensory dysfunction, or sensory processing/integration disorder. Whatever you want to call it, the bottom line is that the sensory problems that are very much present in people across the autistic spectrum are not being recognized by professionals who are treating autism. Actually, they aren’t really recognized by anybody. This frightens me.

I recently graduated with my degree in psychology. During my education, autism was brought up frequently in many of my classes. What was alarming though, was that the information being taught about autism neglected to mention sensory features. In my textbooks and during lectures, I would learn about general autism. You know what I’m talking about: little verbal abilities, communication problems, social deficits, and learning impairment. I would raise my hand and mention the importance of sensory dysfunction in autistic people. The professor would either shoot me down or brush off my comment as not important to the field of autism. My peers never knew what I was talking about.

I began to panic, thinking that this must be a mistake, and that sensory problems were definitely a well known part of autism. I was so wrong.

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As I began to research on my own, I discovered that many websites that had information about ASD neglected to include the significance of sensory problems. If you think about it, this is mostly true across the board of autism research. Ask someone what autism is, and they are likely to respond with: communication problems, tantrums, social impairment, nonverbal, etc. (Side note: I am aware that not all people with ASD have sensory problems, and that not all people with sensory problems have ASD, but the link between the two is too obvious to ignore.)

What the heck is going on you guys? I’m seriously concerned here.

The most common problem with autism IS sensory dysfunction, yet, this is rarely mentioned by the medical community and basically unknown to the general public. (Making Sense of Senses by Virginia Hughes, 2009. Link to the article at the bottom of my post).

I’ve heard things like:

“My child hates having things on his hands, like glue.” 

“My sister squints when she is in a bright room and she covers her ears in the mall.”

“This boy doesn’t like to be touched, but he wants to touch everything!”

My argument is that sensory problems are the basis for many of the more well-known aspects of autism, like communication and social impairments, verbal difficulties, learning problems, and most importantly, behavioral problems.

(By the way, a few months ago I read Temple Grandin’s book, The Autistic Brain, and was amazed to see that she basically said everything this post is about: the lack of research on the importance of sensory features. Temple stole my original idea but I’m going to let that slide even though I totally thought of it first). Ok, where was I….

I believe that sensory problems – which are being completely neglected in the field of autism – are responsible for the many problems that are commonly seen in people on the spectrum.

This idea makes so much sense to me because I live it. I KNOW that when my senses are overloaded, the rest of me (my ability to communicate, perform a task, regulate my emotions) is screwed. It is not until my sensory problems calm down that I am able to reorient myself to function.

If we look at the common behavioral features of people on the spectrum, it is clear (at least to me) that the behavior is a direct response to the lack of sensory processing ability. Basically, many autistic behaviors exist because the person is trying to sort out their sensory environment. For instance, the need for routine and consistency is highly valued by autistic people. I think this is because routine equates to predictable sensory environment. There will be no surprises, and we generally hate surprising things.

Self-soothing techniques is another example. To combat the disarray of sensory environment, people on the spectrum employ multiple self-soothing, or self-calming behaviors such as pacing, rocking, hand flapping, verbal repetition, etc.

Looking at autism, I feel it is crucial to focus on the internal processing that is causing the behaviors that are observable. Right now, information about autism and research about autism is so heavily concentrated on changing maladaptive behavior (tantrums, screaming, hand flapping, hyperactivity, etc). Are we forgetting to look at the causes of these behaviors? The fact that these behaviors are occurring because the person with autism is trying to make sense of their dysfunctional sensory processing and their overstimulating environment. It’s time to focus on altering the environment to suit the needs of the person, rather than trying to force the person to adapt to an unsuitable environment. The latter is absurd and is happening all the time. It’s time to focus on treatment for sensory problems, like a sensory diet, which allows the person to know their sensory limits and what to do to alleviate sensory overload.

And that’s my rant. I will most likely write more about this in the future, but I wanted to get this out of my system while I had the free time to do so. Thanks for reading….sorry for the lack of humorous illustrations like in my other posts.

Here is the link to the article, Making Sense of Senses, which I referred to in this post: https://sfari.org/news-and-opinion/blog/2009/making-sense-of-senses

Feel free to comment and share
xoxo
~Kelly~

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What the heck is Sensory Processing Disorder?

What the heck is Sensory Processing Disorder (SPD)? Also called Sensory Integration Disorder, or, as I call it, “My brain hurts from all the noises and lights and junk. I can’t function or anything, so I’m just gonna go to bed.”

I have found that nobody knows what SPD is, or just how deeply it can impact a person’s life. So darn it all! I’m making a post about it.

First, what the heck is sensory processing?

All of our senses are processed through our nervous system. That is, information is collected by our senses and sent to the brain where it is processed and sorted. Once this is done, your brain tells you how to respond to that information.

Second, what the heck is sensory processing disorder?

The disorder part comes into play when the act of sensory processing goes haywire. The sensory information gathered by the nervous system is not correctly interpreted by the brain, which results in numerous symptoms and behaviors.

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What happens then?

Well my friends, if your brain does not know how to understand the information that it is being fed, you’d better believe that your response to it will also be quite messed up.

For people with sensory disorders, the resulting behaviors from a malfunctioning sensory system can vary tremendously. For some, they turn-inward and become still and quiet. For others, they lash out and have a loud, head-banging, arm-flailing meltdown.

Personally, my body shuts-down. I cannot talk (or make sense when I do speak), or walk straight. I am disoriented, irritable, crying, and feeling completely detached and ill. The environment becomes simply too much to process, so my brain tells me to just turn off for a while.

What’s it like living in a sensory world?

As you can imagine, living with SPD is, shall we say, challenging. All aspects of living on planet Earth require that you have a functioning sensory system. This is especially true in Westernized societies where sensory stimulation is considered fun and enjoyable. Of course, it becomes less fun and less enjoyable when your brain cannot process sensory signals the way they should. The world becomes unexpected, chaotic, frightening, and confusing. Basic aspects of life such as taking a shower, cooking dinner, seeing friends, working, going to school, watching television, or eating become a battle.

Imagine showering if the feeling of water dripping on you made you want to run for your life, or the water temperature feels painfully cold for you, but to everyone else and their brother, it feels fine.

Imagine going to school where the bus is bumpy and the radio is painfully loud, and the seats are shiny and feel different and ugly on your skin. The children are noisy and they move fast, and the teacher gives you white paper that hurts your eyes to look at. Your hand won’t hold the pencil, and the lines and words are jumping and moving. In gym, you are terrified of climbing the cargo net but you love crashing yourself into the blue cushy mats. In art, the thought of finger-painting makes you cry, but you love cutting paper or looking at shiny scissors.

Imagine you can’t get a job because the store has fluorescent lights and the customers are loud, and have screaming children. Your job requires you complete tasks for countless hours in a sensory-filled environment. Your clothes are itchy and too tight. The feeling of denim or fleece is awful, but you have to wear it. There’s a tag in the shirt that makes you want to scream.

Imagine you try to eat dinner but the smell of food makes you gag, and the feeling of the food in your mouth is unbearable. But you love to touch it with your fingers because your body tells you that that makes more sense, and it doesn’t hurt.

WHAT I’VE LEARNED…

Here I am now, age 22. My sensory disorder still plagues my life. When I reached my teen years, I found that therapy to help me cope with this disorder was virtually non-existent. They assumed that because I was 13 years old, I was able to do all the therapy on my own. I find this disturbing. It’s not like sensory problems go away. They can be managed and treated, but as of right now, this problem is not curable.

Even worse is the fact that the majority of people – both the general public and professionals – are either blissfully unaware of sensory disorders, or they don’t believe in them at all. Yes, you heard me. Many “professionals” do not think sensory problems exist.

When I ask people if they know about SPD, they respond either “no,” or the conversation goes like this:

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Yeah like karate. UGH. BOW TO YOUR SENSEI.

SOME MORE THINGS I’VE LEARNED…

SPD is unrecognized in many people, aka: loads of people living with this disorder go undiagnosed. These people – young and old – have struggled their entire lives being deeply impacted by the challenges of living with sensory issues. I also feel that the sensory components in autism are severely neglected. In fact, I believe sensory problems are a huge factor in autism and the reason why autistic people behave the way they do. Autism is not just about communication problems.

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People generally don’t know much about autism (like the gentlemen in the illustration above) even though a huge number of the population live with this neurological disorder.

When researching autism, I found hardly any information about the connection to sensory problems. Everything was focused on communication and social skills. I recently read Temple Grandin’s newest book The Autistic Brain: Thinking Across the Spectrum. I was delighted to FINALLY see that she too noticed a huge lack of discussion about sensory problems in autistic people. Temple Grandin, you stole my hypothesis!!

I believe autistic behaviors stem from sensory overload (or under-load). Meaning, autistic people behave the way they do (social problems, little to no communication, meltdown, stimming, detachment/zoning out, need for routine, etc) as a way for their mind/body to cope with the sensory processing malfunction.

THIS, I feel is the most neglected part of autism, and it is neglected because sensory processing disorders are neglected across the board.

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Any thoughts/comments on SPD or related issues, leave a reply below. I love to see feedback or discussion! 🙂

xoxo kelly