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.
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
I’ve got a couple of links for you!
https://medium.com/matter/70c3d64ff221 (about the Intense World Theory).
The professionals I’ve dealt with here in the Netherlands seem for the most part to be very much aware of sensory difficulties. The fact that it’s been added to the DSM-5 wasn’t surprising to them at all. I’m even doing a mindfulness training specifically targeted towards autistic adults that pays attention to sensory integration (although the practical side of it – like how incredibly noisy the room is – still seems to take the trainers by surprise, sometimes). So I’m fairly optimistic that even if it is not something that everyone is aware of, it won’t take much longer to become part of the awareness of autism in general.
Firstly, I’m super excited to hear about the positive work that is going on in the Netherlands regarding sensory problems. Your work sounds really interesting! I can’t say the same about the approach to treating autism in the US, as far as I know of. It was truly wonderful to hear that the DSM5 added sensory features to the autism diagnosis, but at the same time, I’m waiting for them to add sensory processing disorder in too.
And those links were UNBELIEVABLE! Especially the last one, about the intense world theory. My jaw was on the floor for the entire read. It’s quite overwhelming to read something like that when all my life I’ve been told the opposite about this condition. I had proposed this exact idea (the world being too intense) to my mom regarding my own difficulties a few years ago and we agreed it made sense. I’m thrilled to see research is being done about it!
The Intense World theory makes a LOT of sense, especially when you start looking at people who are more severely affected. I don’t entirely agree with the “autistic people have better brains” part, because I think we have the same distribution of IQs as the non-autistic population, but the different processing definitely gives us a different outlook.
When I’ve explained autism to friends and relatives, I put a lot of emphasis on the sensory issues, and that seems to garner more understanding than explaining the diagnostic criteria. Imagine you’re a baby, starting to learn how to process sensory input. If you need far more time than your peers learning this skill, you’re going to lag behind on other aspects of your development. And especially with social skills, people simply ASSUME you already know these things, and don’t offer the same information in later development stages. So you can never catch up, even if you do get the sensory part under control.
(PS: Speaking of sensory difficulties, I have a really hard time reading text on a dark background, especially when the contrast is as low as this. Don’t know if I’m the only one, but wanted to let you know).
This is completely true. I’ve never understood why so many people ignore the sensory dysfunctions in ASD. It usually causes hypersensitivity/hypo sensitivity to certain senses. Since overstimulation is the main cause of meltdowns, how come it’s never mentioned in the diagnostic criteria? Very interesting post
Thanks for your comment. The DSM-5 (the newest addition) actually added a bit about sensory issues being part of a diagnosis of autism. I was excited to see they included it, but sensory processing disorder itself is not yet recognized. I’m also very sure that most people still do not recognize sensory dysfunctions as part of autism – at least, not yet! Let’s hope by including it in the DSM and spreading the word about its significance, things will change.
I recently changed the colors on my blog because I thought the black and white was too harsh, but I also agree that the dark font on the black is too low contrast. I will find a happy medium. Thanks for letting me know…I’ve been questioning it anyway. 🙂
Ok, so I changed it to dark purple with light cream colored font. This looks better to me – not as harsh but still visible.
Loved your journal ~ very insightful!
Thanks Kerry!!! Glad you enjoyed it!
You might also be interested in reading this http://www.wpic.pitt.edu/research/cefar/PDF/Autism_ComplexInfoProcessing.pdf if you want to read papers on autism; that one is talking about the idea of autism being about general information processing, and sensory processing being part of it. (I found it recently and keep meaning to read it, but it seemed like it’d be interesting to you from what you were talking about here).
Wow this looks super interesting and right on the money with regards to my post. Thanks for sending it, I’ll be sure to read it!