Autism and Interoception

How are you feeling?

Have you ever heard of interoception?
This a sensory function which is still being described, and there is still some disagreement over what its definition should include.

Interoception is the sense of your inner self which includes the ability to feel what is going on inside you.

The initial definitions were about giving a person ability to recognize inner physical symptoms of needs: when you felt hungry, thirsty, needed to go to the bathroom, felt pain or discomfort in your internal workings.

The definition has been refined over time and using recent studies now includes also your emotional status.

Studies are in the initial stages but tend toward showing that neurological ties to the inner body are the same that are used for ‘feeling’ emotions, and that yes, emotions are tied to physical feelings as well.


We all know that, if we think about it. Tension headaches, anxiety stomach aches, the burning that comes with anger and the churning gut of distress, and how do you suppose the term ‘heartache’ was coined?

Right now there is debate over which comes first, the physical sensations or the emotional processes involved in recognizing ones “feelings”. Some scientists are saying that the physical responses are the initial ones which cause us to then recognize the emotions behind them.

I think the jury is still out on that idea, but it is interesting to think about the implications.


Interoception as it is described today is related to recognizing physical and emotional status of our inner selves. It is the neurological sense that tells us ‘how we feel’ in the most literal way.

How is this likely to be tied to autism?

Interoception is believed to exist because of human neurology. It is being defined as another sense.
We are equipped with an internal monitor through a network of nerves which sense and report “how we feel”.

Autism being a function of neurology and strongly tied to sensory processing, can show its effects in any part of the human neurological system.
Many autistic people are not good at recognizing when they are hungry, thirsty, tired, whether their bladder is full, and on and on.
We are notoriously poor at sorting our emotions as well.
All of these issues are related to interoception because they are all issues of sensory processing within us.

I will use imaginary Sally as an example.
Sally was late to be toilet trained, she simply was not able to tell when she ‘had to go”. She often wet the bed. Her body did not wake her when her bladder was full because it did not recognize that discomfort.
Sally had a ruptured appendix when she was 25, and did not recognize the abdominal ache, which she reported as vague and undefined. She finally had uncontrollable vomiting which drove her to the emergency room where she was barely in time for her life to be saved by immediate surgery.
Sally will get so involved in a project that she forgets to eat, and when she finally does eat, she does not know when to stop, often getting sick from overeating.
She is known for her volatile temper and her extreme emotional outbusts.
All those struggles are likely to have their base in processing input from her interoceptive system.

Do you have signs of interoceptive struggles in your own life?

autism and proprioception

You are Here X

One thing we discussed as I finally got my official diagnosis was my lack

of coordination. I tend to cut corners short and run my shoulder or knee into

the wall or the furniture. I am constantly hitting my toes against chair legs or

failing to step high enough when going up steps. I can trip over air! I often put out a hand as I walk along a hall, always hold onto the stair rail, touch things as I pass them to help myself be aware of how far away I am from them.

I mentioned lack of depth perception making it difficult for me to judge the

speed of anything coming my way… a thrown item will hit me in the face,

while driving I tend to overcompensate in allowing the space between me and oncoming

traffic when pulling out from parking or a stop sign.

The doctor said “that is not a problem with depth perception, that is a problem of proprioception”.

I had heard the term before. The Dr explained that almost every person he diagnosed with autism had struggles with proprioception. He thinks these struggles are directly linked to autism. ( that is not part of the DSM V, but it has been something that Dr has used to help when he looked for autism in persons he worked with) .

I decided to look more closely. Proprioception is the word used to describe our sense
of where we are in time and space. Proprioception uses our whole body’s nervous system to determine how to use our bodies, tell if we are upright, feel movement and know what movement we ourselves are performing… it is the sense that helps us keep our balance, that helps us walk, be seated, to catch and throw a ball, and to do complex movements of our fingers and hands.

Proprioception tells us how much pressure to use when handling something delicate or how much force to use to close the back door or how hard to hit with the hammer while driving a nail.
Proprioception is used when sitting in my chair typing on my keyboard… am I upright? Is my seat firmly in place on the chair? How hard must I press the keys to produce the words I am seeing in front of me? I can feel that my feet are apart a few inches and flat on the floor. If I want to rise, I use proprioception to judge how much strength I must use to push myself away from the desk, to lift myself into standing upright postion, and to know when I have done these things. Some call proprioception the 6th sense.

Problems with proprioception can be the reason some of us struggle with issues of “personal space”, either our own or in perceiving the space of others.

We use our other senses to create proprioception within us. Removing vision, for example, makes it more difficult to sense motion around us and relate to the motion of other entities. It makes it more difficult to judge where we are- our position in space relating to everything else.
The same for the sense of touch. Do we know we have our feet on the floor, the fingers on the keyboard, or our seats firmly in the chair if we can’t feel them? Proprioception keeps us oriented in the world. We use it in many ways every day.

My reported problems with balance and coordination are directly related to the fact that the input I receive is not constant, or is not processed correctly, making it difficult for me to keep my balance when doing anything while in motion.


I think it also is responsible for my sense of fear or being overwhelmed in wide open spaces, or when looking down on open spaces… say, from a window in a multiple storied building. The fear that I will fall overcomes me and I am frozen to the spot.

I could not get out of the car in the parking lot when we visited the Grand Canyon years ago. I was filled with terror and fear of falling, seeing the huge open and deep spaces outside the windows. I was miserable with fear and ridiculed for that!

I get motion sickness easily and frequently.

I learned to ride a bike at age 10 and was terrible at it, I gave it up by the time I was 12 due to fear of falling off, which I did on a regular basis. No fun in it for me, even though it made my trip to the candy shop much quicker.

I fell off my horses frequently.

I am overcautious and hypervigilant as a driver or a passenger, safe, but because I know I must compensate for my inability to judge space and speed with much accuracy. Thank goodness for the speed regulating devices that one can ‘set’ on today’s cars.

One of my family nicknames was “grace” because there was not a graceful bone in my body.

Do you struggle with issues surrounding proprioception? If you are autistic, you probably have experienced these issues or ones like it.

Again, to clarify: problems with proprioception are not listed in the DSM V as being diagnostic of autism, and many people who are not autistic may also have problems with proprioception. There are therapies available which may help some proprioception issues. Look up ” sensory integration” to learn more.

Masking stims: What are you Hiding?

“Me?? nothing!” Another Autistic awakening.

I guess it was inevitable. As we grow and change our behavior adapts to pressures surrounding us. Most of us have stopped drinking from a bottle, sucking our thumbs, carrying a blanket, and have become house trained (ok, toilet trained, then) by the time we go to school.
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Note: stims are self stimulating behavior which provides sensory input and which autistic individuals instinctively seek to help themselves with self expression, self comfort, or to cope with our world.
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I was a thumb sucker. I had a callus over my thumb where my teeth made almost constant contact with it… pressure from parents and grandparents to “stop that, you are not a baby any longer!” eventually had its effect and this form of self comfort was no longer available to me. I longed for approval, and did all I could to avoid disapproval and scolding.

About age 2 I was taught to brush my teeth. By age 4 I was expected to brush my own teeth without help. It was explained that my teeth would fall out and I would not have any if I did not brush them often. I demanded to brush after I ate anything. To this day I brush my teeth immediately after eating unless I am in public and it is impossible to do so promptly. I floss frequently, even to the extent of carrying floss picks everywhere with me, and having them available around the house… I have described this as compulsive behavior in the past.

I went to school at the age of 4, I was not emotionally mature enough, but I was reading, counting, could tie my shoes… what a bright little girl! I began to bite my nails shortly after I started school.

I continued biting my nails until once again social pressure began in middle school. By 7th grade the teacher was inspecting girls’ nails before class every day to see if they were clean and well cared for. Everybody noticed when the teacher shamed me in front of all the class. How humiliating! I learned to compulsively wash my hands and to dig beneath the quick to clean my nails, and I tried desperately to quit chewing those nails and the finger edges until they bled.

I was successful after several months of struggle.

I began to bite and chew pencils and erasers. I demolished several pencils in a week and always had splinters in my gums and between my teeth. This was a short lived experiment on my part, resolving itself in a couple of months. It was painful to brush my teeth then, so I found a useful behavioral substitute in gum chewing.

I chewed gum all day at school, often getting scolded for having gum in my mouth and being punished, but I could not quit. I used all my allowance to purchase gum. Being without gum caused panic and anxiety. I had to have it!

Around that time I discovered jaw breakers. I began to carry and consume jaw breakers, having them in pockets and purse at all times. I could manage to chew up a jaw breaker between classes, ( 3 minutes allowed to pass from one class room to another). I went through many jawbreakers a day.

I had the jawbreaker habit for many many years and eventually my teeth were so stressed I had to get caps put on as I broke teeth off from chewing such hard candies.
I have had to give jaw breakers up now. All that sugar releasing constant endorphins, all that wonderful hard crunchy chewing! It was perfect for me (except of course for the obvious health consequences).

I have always sought out hard pretzels, loved hardtack, hard dry toast, the harder the better, the more chewing experience the better.

I even have a description of words for the foods I like best.

They are foods which provide “chew time”: ( you would think that might have been a clue, if I had been looking!)
I have kept the habit of constant brushing and flossing, but now(today) instead of seeing that as compulsive behavior, I understand it is another way of masking my need for oral stims.

To this day I love hard and dense breads, pretzels, crackers and jawbreakers. I am warned not to have them because of my dental conditions. Caps can’t take the abuse.

I had never put this string of behavior together until thinking today about reasons it seems impossible for me to lose weight. I seem to have to have something in my mouth at all times. Snacking is a constant thing with me.

Suddenly the light went on!

I am one of those people who need lots of “chew time”, oral stims do something I need… I have had inner ear/balance problems all my life. I wonder if chewing hard things somehow provides vestibular stimulation as well?

I am continually uncovering ways in which autism has worked in my life. Truly this has been a surprise and a revelation.

As an older adult I have adapted to social pressures, masking stims such as this need for chewing over and over as social pressures intervened with my favored methods of stimming.

Having finally uncovered the hidden stim, I am making plans to look into finding out more about adult “chewies” . So interesting. I’ll report on my progress at a later date.

Now I am going to sit down and try to search my memories for other hidden stims.

What are you hiding?

Reaction to Diagnosis

I don’t know if it is the same at any age

I have not looked at any studies, but I participate in several autism based groups online. Ideas stated here have for the most part been formed on my own experience with encountering autism, and reported experiences from adults in online groups I belong to.
Each person’s experiences and perceptions will of course be different.

I think it might be a bit more difficult to shift gears as we age. Autism is known to cause rigid thinking. We older autistic folk have had plenty of practice at forming rigid ideas by the time we reach our 60’s.
Is late diagnosis of autism more shocking to those of us who are elderly? I suspect that it is.

As older adults, we have overcome or adapted to many struggles alone.
We have spent a lifetime believing we are “normal” but also believing we are somehow different, incompetent, selfish, bad, wrong, stupid, useless, thoughtless, inept, uncaring, rude, intrusive, hateful, and on and on… a litany of fixed ideas in our older and less flexible brains, learned in our earlier life and more or less accepted as inner truths because we did not know about autism. We have set ideas about ourselves and others and how the world as we see it works.

We may have wondered why we struggled, but learning at last,( although it is sometimes a relief), that autism is the answer, we may suddenly find ourselves scrambling to find a new platform to view our innermost selves.

It is as if the ground we have stood upon for so many years is crumbling.

The foundations of the house we built our ideas on is being torn down.

We will need time to replace these with ideas about our selves and how our diagnosis of autism makes everything different.

Many older people report feeling shocked at first, even though they knew, deep inside that somehow they were ‘different’.
Knowing about autism changes all of the concepts and precepts we may have held about ourselves and our world.
Knowing that we have been wrong in the way we understood almost everything in our worlds, well, that is a lot to digest!


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Let me insert a warning here. Your autism is hugely important to you, but it will be of little consequence to most all of the people around you. They will be likely to react by passing off the information of your self discovery lightly, and assuring you that they still love you etc. .
They will be likely to make ignorant statements about “everybody being a bit autistic” or they will deny it… never mind, don’t argue. Don’t take these things personally. Your diagnosis will mean the world to you, but as in all things, most people will not be able to understand and since it doesn’t affect them personally, most will simply not be very interested. That’s OK. It does not mean they do not care about you, they simply don’t see the significance of your discovery. But they will see the results as you work though your new understanding of your self!


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Learning about our autism is a shock in the way that a sudden loss is… but this is loss of self identity.

Most people newly diagnosed with autism report going through the stages of grief. Shock, denial, bargaining,sadness, anger, acceptance. All appear and disappear, in any order, in rapid transition or slowly over days and sometimes years.
Do not be surprised at your emotional responses to finally learning you are “on the spectrum”.

My major reaction on figuring out I have autism/am autistic was relief. I knew there was something different about me, but had not a clue as to the nature of my struggles or why I seemed to have so many difficulties with things that others seemed to find easy.
I have been grieving in an ongoing way for years, but now I have an answer for that too. I have been sad for the loss of opportunities and things that ‘might have been’. I have regretted so many incidents of the past where I made bad decisions, misunderstood motives, misjudged so many people or situations. I have been angry over many of those things too. Nobody knew!
Feeling cheated of an ordinary life (whatever that is!) and wishing I had known or simply not been given autism as my share in life, feeling extraordinary relief and curiosity on learning how I was different and why… all going round and round inside me.
I bet you will feel similar things and a whole range of emotional turmoil. It is like being engulfed and having to learn to swim. Not a piddly little word, but one with great meaning and consequences “autism”.


Newly diagnosed with autism means loads of emotional homework, lots of looking for new ways to interact with one’s world, and new understanding of so many painful things from the past.
Please give yourself time to process all the new information, the new ways of looking at life and others, the new things you learn about yourself.
It took a lifetime to learn all the ideas that now are being shaken and tested from new perspectives.

Many new ideas will take the place of some old “stinkin’ thinkin’ “. , Many old ideas will be discarded, pains will be dug up and revisited from new perspectives.
I like to say I am a work in progress. My growth in understanding of my world, my self, and everything that applies to these things has been phenomenal. It has been the most exciting thing, freeing, uplifting, a sort of fresh start in a new and better world, to learn of my autism and to learn how to live better through my better understanding of how autism has touched every part of my world for the previous 65 years before I knew, before I began to understand so many answers I found when I found out about autism.


It is my deep hope that the medical community and those learning about autism to apply to professional practices today will be able to help not only children and families dealing with autism, but will be able to diagnose and explain their autism to old people just like me, but who remain still undiscovered and struggling with their Autism without knowing.

Autism Diagnosis at age 68

I will be 68 tomorrow…..what a great gift!
I told my husband when we were leaving the office that after our wedding day and the birth of our children, this was perhaps the most significant day of my life.

I am still processing the fact that I now have an official diagnosis . I have autism and there is no doubt at all.

Spouse and I presented ourselves at the kind Doctor’s office two days ago.
There had been many last minute doubts about whether the appointment for diagnosis would actually happen.
Dr’s fragile health was a huge concern.
We did not communicate well, and missed making contact to confirm the appointment. A last minute phone call found somebody at the appointment desk although the office was already closed.(phew!)
They called the Dr and he called us back to confirm that if he was able health wise, he would come on Monday.
We went downstate to the Detroit area on Sunday afternoon and checked into our motel. Reported to his office at 9 AM , and after a wait (tension building for me! My husband was so supportive!) of about an hour, we got the evaluation under way.

THE PROCESS
Since the kind Dr is a psychologist and not a neurologist, the process of sorting out my autism was quite different.
At no time was a clerk or helper involved, it was almost all discussion and questions/answers.
A few short tests were given to me personally, by the doctor.
I was asked to sort blocks to make patterns and given some oral questions to answer.
I was with the Dr for a total of 6 hours, and my husband was present for almost half that time.
We both answered questions and Dr taught us through explaining as we went, after I answered a series of questions, he explained what he had been looking for in my responses. Each time he explained how my responses helped show I have autism.

To my surprise, he told us he had been very sure of my autism after our initial exploratory appointment in late March.

THINGS I LEARNED:

Dr’s first impressions of me regarding autistic behavior came through the way I spoke, voice inflection, use of words, etc.
He has 40 years of experience, with autism being the majority of his practice. He says he has grown to recognize the distinctions in the way autistic people speak/ use words. Dr says only about 30 percent of people with autism speak.
That is very sobering. I feel so lucky. Words are my only strength.
Feeling so sad for my autistic brothers and sisters who don’t have that gift.

The evaluation appointment was to define my strengths and weaknesses.

Dr told us that a hallmark of autism is uneven neurological development as we grow. If our neurological development lags in certain areas, it is a sign we may have autism.
I never crawled, I have always been clumsy and awkward physically.
I was reading at a much higher level than usual at age 4.
Those are all examples of uneven development, where things that should have developed (neurologically) first failed to, and where other things developed too soon.
Testing confirmed the same pattern.
I have a couple of very strong areas, and several weak ones.
Typical (neurotypical or average) results would have shown a smooth line of development in most areas.
If my test results were put to a graph it would have peaks and valleys with few smooth lines.

Dr remarked that I have a great vocabulary. That was the highest point on my graph.
My weakest were visual processing and processing of the spoken word. I have good short and long term memories. The previous neurological tests I took with such traumatic “diagnoses” actually reflected the same peaks and valleys, strengths and weaknesses.

BUT the kind Dr pointed out, the interpretation the neurologist had put on the results was wrong. Dr pointed out one by one where the neurologist’s test results pointed to autism, how the results had been misinterpreted probably due to the neurologist’s complete lack of experience in work with autism, and lack of knowledge of information that has been known regarding autism in the past 15 to 20 years. (The neurologist simply had never learned more about autism since his college days of the early 1970’s).

One by one, the points made on that neurologist’s report and the negative diagnoses I was given, have been refuted.
How validating and how uplifting, after the devastation to my thoughts, ideas, concepts, and self identity at the time of that first attempt at diagnosis.

Dr pointed out my deficits and my struggles clearly, and showed how the neurologist had missed those struggles/deficits as well.

I asked so many questions and got such clear explanations!

Dr explained that he sees similar speech patterns and use of words among his verbal clients with autism.
He looks for patterns of uneven neurological development.

Most surprising of all to me was his statement that he watches for hints that clients are gathering details, that the smallest details are noted by us and that we are very interested in collecting information regarding those. He showed me a portfolio of art by his many clients over the years. So many of these drawings were made up of small and very specific details! He says that by observation he can see that those of us who are autistic are gathering information regarding details all the time. Dr says it is obvious in interacting with us. I plan to begin to watch the others I interact with to look for this behavioral clue!

He asked me to draw human figures, and commented about my openness and vulnerability. I got the idea that this was also often a characteristic of autism.

Doctor discussed in detail how autism is tied to anxiety, depression, and compulsive behavior patterns. I will probably write about these things in more detail at a later time.

I can not express my gratitude enough toward this amazing, kind and extraordinary man!
He gave so much of himself to us in taking time and so much effort in spite of his very serious illness ( and after his official retirement ), to help us by giving analysis and diagnosis, spending so much time helping us to understand how and why he knows I have autism.

A note on one little twist of life, the person who recommended Dr to me was the first adult he diagnosed with autism. I will be the last.

Dr had advice, too, for how I might proceed with my desire to help others in the elderly populations to learn about autism in themselves or somebody they care about.

I will be taking some time off to sift through the overwhelming emotions and whirling thoughts , trying to develop a plan and preparing to go forward with the next step.

Feeling so grateful for this generous and compassionate man who reached out to us and provided the final information and explanations I had sought for so long.

Self Care

Might be more to it than you think!



One topic that comes up frequently on the autistic groups I attend is self care.
This is usually mentioned when people are feeling stressed or have had a meltdown.
Self care is usually mentioned as something one does at the moment of distress or trouble. Things like retreating to a darkened quiet room, putting on headphones, taking a long hot bath (with bubbles!), or self comforting in other small ways.

I want to change the concept of “self care” as immediate first aid applied in generous doses to urgent situations. I believe self care, if applied correctly, goes much deeper.

“Self care” can be described as everything one does to assure one’s own health and welfare. It is not just a band-aid, quick fix box of self comforting behaviors for bad days. True self care is in seeing oneself as an entire person and taking care of ourselves, all the time, not just in emergency situations.
Many of us struggle through daily living to the extent that we might never have given thought to the future. We are busy working from stressful event to stressful event and have not stopped to think that we can make choices to change things for the better. We do not have to take on that new project. We do not have to do that dreaded social event. We do not have to jump through hoops to please others, say yes when we would rather say no. We do not have to dress in certain ways. We do not have to go to places we dread. We have alternatives! We can build lives for ourselves and take our autistic struggles and strengths into account as we build lives with less stress, better health, more convenience, fewer challenges to our sensory sensitivities, and a better future for ourselves and those we care about.
Self care is about making your own autistic accommodations. It is about planning for a healthy future. It is about doing things differently to bring about better results.

Examples of self care include thinking through your personal needs and making sure you provide opportunities to assure those needs are met.

Examples of self care: Make a schedule and stick to it, make sure you have a safe home with hand rails, plenty of space to move, less clutter, ease of access to do cleaning and laundry, and other household work. Plan for better health care, diet and exercise. Plan ahead for old age and struggles with things that might be easy now. Why wait? You can take control of so many every day issues and challenges and figure out ways to make life better for yourself.



Self care is having a list of emergency contacts, a will and a power of attorney, A person who will take on the responsibility of your care decisions if you are not able to at some point ( power of attorney for health care).

Self care is refusing to live in a filthy home, have a dirty body, or stinky clothing. There are so many ways these issues can be handled. There are so many alternatives available besides tolerating these issues because of sensory struggles or administrative dysfunctions.

Self care is refusing to take on yet another set of responsibilities because you are already stressed to the max. It is saying NO when asked to do yet another thing because you have always said yes in the past. It is taking time to recognize your strengths and weaknesses and building ways to make sure you do not harm yourself or others through making poor choices or ignoring your needs for rest, safety, or health care.

Self care is making sure you get exercise, have a healthy diet, and regular medical and dental care. Self care is thinking ahead and building a plan to make sure these things are done.
Self care is learning about yourself and what you need to stay healthy, and setting aside time for yourself instead of rushing to please others and serve their demands. It is knowing oneself and knowing what you might need help with, and what you are best at. I did not even begin to think about these things until I learned of my autism. I was busy rushing around trying to please and help others regardless of how extreme the demands on my own emotions or health. I was busy trying to appease others and to keep others from getting angry with me by any slight disagreement over even the smallest things. I had no idea how my own behavior was making my problems so much worse! I never thought about it at all, believing that all the stress and pain were simply part of life and not knowing I had deep struggles that others did not. Is this true for you today?

Self care is not selfish. It is healthy to make sure we have our basic needs taken care of, and that we build a life for ourselves which takes into account our need for perhaps unusual accommodations for our unique struggles and strengths. Most of us have heard the explanation of the “spoon theory”. It is true that if we use everything inside of us and do not replenish and provide for ways to be rested, refreshed, and renewed, that it will take us much longer to recover or to be successful at things we want to try.

Self care is an entire system of living, which you must think through and design for yourself, ( often with the help and cooperation of others) that makes sure you get what you need to survive and even thrive. One of my several often- used sayings is “self care always first”. Self care is important to your health and sanity, and to your having a better life both now and in the future. Do you have a plan for long term self care? It is not just self comfort after a crisis, it is a way of life! If the thought of making a self care plan is overwhelming, there are many ways to get help from others. Think about it and reach out if you don’t want to do it alone.