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?

The Lost Generations

Since figuring out my autism, I have spent countless hours reading scientific papers, autism websites, personal blogs, and also I have joined a few online autism forums. One of these is especially for older people who have gone undiagnosed until recently. For those of us to finally learn we have autism, there is shock, relief, and a whole array of reactions. Many of us seem to go through the stages of grief. Denial, bargaining, anger, depression/sadness, and acceptance… back and forth. It is so wonderful to have the understanding and appreciation of others who have also experienced so many similar things.

I have been fortunate to get advice, insights, education and counsel from the members of the online group. Most precious to me is to know I am not alone, that i have a neurological condition which makes it much more difficult for me to navigate my world, especially socially and emotionally. I am so blessed to have the internet. I can communicate with ease and not be confused by body posture, eye contact, facial expression, tone of voice…not having people put off by my own oddness and appearance. Most of the people I communicate with are very direct without guile or manipulative behavior. What they say is for the most part what they mean. All of us grew up in a time where nobody knew about autism. We are able to share experiences and understand each others’ frustrations, concerns, struggles of understanding and coping, and share strategies to overcome the many ways in which our autism gives us trouble. Simply a miracle which could not happen without the internet.

What about those who went before? My mother was born in 1929, a child of the depression and in poverty. She too had autism, although I did not figure that out until I learned of my own autism. People with autism in earlier generations were the street people, the crazy uncle , the bachelor brother, the hermit, or the local cat lady. My mother’s family called her a simpleton, or said she was simple.

Autistic people in earlier generations were the quirky professors or music teachers, or the obsessive archeologist or scientist. They were manual laborers, odd job people, those assigned to simple back room tasks in domestic or industrial, or farming roles. They were folks in the poor house and housed in institutions because so many of their behaviors were not understood, and were assigned to severe psychiatric disorders. Originally autism was thought to be a form of schizophrenia.

Autism has always been with us. Statistics show we are much more prone to anxiety and depression, although that is not considered diagnostic of autism. Statistics also show our lifespans are considerably shorter than average.

What of those in nursing homes and institutions being medicated and labeled as intractable, hopeless, confrontational, combative, etc? My mother’s experience in nursing care could have been much better if we had known of her autism and asked for accommodations for her care. So many of the ways she was approached by staff and how she reacted to them could have been helped by simple understanding. I may talk of this more in another blog. It makes me quite emotional to think of how she suffered and how helpless I was to make her life better.

There are thousands of undiagnosed adults who have found their own way through life, never understanding that they had a condition that made everything in life so much more difficult, feeling like a failure, lonely because they don’t know how to reach out, frequently working low paid jobs or not working at all because of the social hurdles to overcome in society in order to perform even the most menial labor. How much better it could be to understand, to learn what has happened to oneself, and to know it was not your personal failings or lack of character which left one full of frustration, anger, sadness, and shame.

How much better to learn to cope in better ways, to learn to communicate effectively. How wonderful to have those around you understand your upset at sudden touch, loud sounds, flickering lights, sudden demands to change whatever you are doing to something else. How freeing to escape demands to sit in groups in classes or craft groups or social tea parties and the like when it is all overwhelming and difficult to deal with.

I started this blog hoping to help older people find and recognize themselves if they are autistic. My own personal discovery of my autism has led to final understanding of so much emotional pain, so many fears and anxieties which developed because I did not understand I had autism, and how it affected everything in my life. 65 years of emotional pain, deep anxiety and depression.

Pain has for the most part dissipated now that I understand what happened, and how . I will always wonder what might have been, but of course that is all speculation. Reality is where i spend most of my time, not fantasy.

Perhaps you have somebody you care about, even care for in a medical situation, nursing home, home care, or maybe it is the odd duck in church or a co worker at your place of business. We are in all walks of life from the greatest to the smallest. What a relief to finally know and understand, and to learn that you are not alone, that there are others like you, and for those in care- that people caring for you will try to make your struggles a little less severe, help keep you from anxiety and depression, and to feel finally, understood.