Newly Diagnosed

What next?

I was 66 years old when I finally figured out that I am autistic. I had never suspected, never really thought much about autism, except in the way one reads about autism in superficial special human interest publicity pieces .
I had a few general ideas about autism because a dear family friend had a child diagnosed with Asperger’s while our children were growing up in each other’s houses as friends do. I just never saw parallels in the child’s behavior to mine, perhaps because he was a child.
His father is on the spectrum although nobody knew that at the time. Maybe not so coincidentally I found that of all the people I knew, the communication between him and me was perhaps the easiest and most natural I had experienced.

The last job I worked before retirement was as a caretaker in a State run home for children, and most of the kids were autistic. I never recognized myself in them.
I knew I had social struggles, I was bullied at every job I ever had, including the last one mentioned here. But I never associated one problem with the autistic struggles others were having.

I had too much to do in every day life, making sure my home, family, pets and gardens were all taken care of and trying to meet the requirements of working as well.
Every day there were multiple ‘fires’ to put out, crisis after crisis. I was always stressed, anxious, exhausted. Who had time for self examination and introspection?
It was not until after I retired that I began to suspect I had autism. Somebody sent me one of those on line self tests and the results suggested I was autistic, and that I should explore the possibility. It got me curious. No, could that be true?

I had the free time after retirement which had eluded me all my working life, and I jumped into research about autism. After a year of reading studies, autism descriptions, statistics, opinions, and doing every self test available on the internet, and buying a few books with autism basics (and one self test of great depth). I decided that I am indeed autistic. I am fortunate enough to have all the free time that retirement gives you for searching and introspection. If you are working you will have much less time to devote to your search and it may take much longer to work through the idea of being autistic.

The blog tells the rest of my story, right down to my finally being “officially”diagnosed about 3 months ago.

For so many of us diagnosed either by self exploration or “official” means, finally knowing about our autism is a huge shock. The idea we might be autistic means that everything in our thoughts, beliefs, attitudes, and behaviors may change. Scary stuff indeed!
We autistic folk tend to be somewhat rigid in thinking and may not explore again issues that we think we understand. People tend to be less flexible in general as we age. My son says I am ‘willful’. Stubborn old men and women decorate pages of history and legend. It is a stereotype which probably as a basis in some truth.
We may have known life was difficult for us, but unknowingly believed that everybody else had struggles like ours, and in my case I thought a lot of the struggles I had were somehow my fault because so many failed interactions ended up with others telling me I was to blame. I felt inept, ashamed, unlovable, rejected, and I was always anxious worrying about what I might do to make somebody else mad without knowing why or how it happened.

I Was absolutely shocked when I finally recognized that due to my autism I had very few skills and tools to use which others rely on to succeed in life.
But it was not my fault. I had something different in my neurology which did not allow me to see the world or anything that happened in my life the way most people would see and understand it. No wonder my world was filled with pain, failure, rejection and abuse! Nobody knew! What a relief to finally understand why.

The overwhelming relief that came with this revelation has not faded. I am so grateful to know I am autistic because it explains so much about my past and my painful life.

After diagnosis people tend to feel relief, but they also can feel dismay, anger, sadness for what might have been, and a whole lot of mixed emotions come up and need to be dealt with.
This seems to be a common experience among the newly diagnosed older folks. It is as though the experiences of our life until this point finally make sense, and so many of our beliefs about ourselves and others are shifted, sifted, sorted, and at long last understood from a different point of view. Knowing about our autism shakes us to the core and we must re-build all of our ideas to incorporate our new understanding into the way we see our past, our present, and our future.
Since we are older, we have a lot more sorting and shuffling and examining of old issues to deal with. We have so much more experience! This is naturally going to take time and a lot of emotional homework!
It seems to be common to feel confused, angry, sad, upset, and more, sometimes all at once as we work through our past experiences and beliefs and find ways to fit it all together from an autistic point of view. You will probably grieve for the poor little kid who was so misunderstand and often abused. Nobody knew! You will probably be angry at the bullies, tormenters, punishers and mockers in your past life. Nobody knew. You may grow in understanding about how autism had its part in these misunderstandings. Take your time and sort through it all. It is safe now to look back and to begin to find out how most things that happened to you had a connection to autism.
Give yourself time. I am learning every day all of the ways that my autism affected my life, and the ways it still works in my every day experiences. I am in my 3rd year of understanding, with many things yet to deal with. With new understanding comes peace and learning new ways to do things, to take care of my once lost self and to forgive myself for not knowing it was autism. I can forgive the others who didn’t understand too, for the most part. That brings peace instead of anger and pain. Understanding calms many fears and has begun to give me relief from much of the anxiety and despair and depression of the days pre- diagnosis. Things do seem to get better for most of us once we understand about autism. Our struggles are the same but our new understanding gives us tools we didn’t know we had to help us cope and find new ways to live.
I have felt upset and unsettled for days as I worked through certain memories, experiences, and feelings from the past. That’s OK, there is a lot to work through, isn’t there?
The nice thing is that things that had bothered me from the past, which I had taken out of my memories and re-worked over and over for years re-living the pains and trying to understand: these have mostly gone away and are now quiet in my mind and soul, once I saw how autism had a part in that particular incident.
I say this after 3 years of reading, study, and self analysis. It has taken lots of time.
I am only now becoming comfortable with the idea that I am autistic and understanding how much it has always affected my life. I am sure I will continue to learn more for years.

Learning how I struggled, what skills and weaknesses I had within my neurology has helped tremendously. One of the great hallmarks of autism is uneven neurological development. Do you know which sensory input you find most effective and which are your weakest skills?
I learned that I have very little capability to understand visual input. Movies, demonstrations, videos, and the like leave me with very little. I can’t process visual things. Can you? Many autistic people find that visual processing and visualization are among their strongest abilities. Those people use Movies, TV, videos, and demonstrations easily and benefit strongly from using them.
I read and can look at diagrams, charts, and maps. Can you?
Others are sound oriented and must listen and relate to things through their hearing.
I am very bad at processing the spoken word, but I enjoy instrumental music greatly and try to make that part of my every day life. Spoken word processing in me is almost nil, but in many people it is the strongest skill. These folks rely on audio books, Radio podcasts, lectures, and other spoken media as the best way to connect with their world.
These are just a few examples of possibilities for strengths and weaknesses. If you have never given much thought about how you connect with your world, I believe you will find it helpful to explore your own strengths and weaknesses so that you can help yourself succeed.

Self accommodation for your strengths and weaknesses will be evident. Once you recognize your need for quiet for self calming, your need for stimulation through exercise or sports or dance, your need for certain kinds of music, or how much it helps you to wear sunglasses in places where you will be exposed to bright or flashing/sparkling lights, etc, you can see how this self knowledge helps us make adjustments to our every day living arrangements, travel arrangements, etc. Autistic forums are full of insights and helpful suggestions for new ways to deal with autistic processing struggles.

Sorting out communication struggles is more difficult because we have learned so many ways to cope with our struggles, developed such ingrained patterns of behavior and responses.
I think it would be great if all of us as newly diagnosed autistic people could get a life coach or therapist who could help us figure out new ways to deal with our new self understanding and all of the mixed and hidden emotions and behaviors we learned to protect ourselves and to cope with our confusing and painful world.

Overcoming years and years of ideas that might now be changing due to understanding oneself and one’s autism will take time and patience.
Most of all, forgive yourself and take care of yourself. You may have learned from others that you are useless, worthless, stupid, etc as a child and lived a life believing what others told you. Knowing about your autism should put all of that to rest. It took years of adapting and adjusting to survive, it may take a good bit of time to undo all those ideas from long ago and a to put them in perspective using autism as the light which allows you to see your story more clearly now.

I joined a couple of on line forums for autistic people and spent a lot of time asking questions and getting great information. There are years of experience and insight in these forums, and it is all available at home right there on your computer. It took me several tries to find groups which were compatible. Many groups are made up of parents or young people, who tend to have different issues and struggles and different ways of communicating. Don’t be discouraged, there are autism forums out there of every sort, something for everyone. Keep trying until you find a group you are comfortable with!


I got therapy long before I knew about my autism to teach me better and healthier communication patterns and to help me make better and healthier decisions. What is obvious to many people who are neurotypical (NT) ( average not autistic persons) often needs to be explained to autistic persons. Getting therapy was scary but it was the best thing I ever did… It probably saved my life and sanity. I did not know I had options to choose in my behavior because my autistic inflexibility did not let me see it. I had to be taught. I urge you to find somebody to help you understand your options if you feel at a dead end or like you can’t go on. We may have many healthy alternatives that are hidden behind autism and the way it works in our minds.

Keep in mind that you are not alone! There are over a million undiagnosed autistic adults over age 65 in the USA alone. More of us are learning of our autism and gaining strength and insights every day. I hope we can reach others who are still lost in the older generations, I feel hopeful, knowing how much diagnosis has meant to me.

Autism and sensory processing

Texture, pressure, how does it feel to your skin and your body parts?


Sometimes it is not obvious that we have sensory struggles with the sense of touch/feel, yet so many problems in every day life are based in processing touch or feel of textures and issues with over or under stimulation regarding the sense of touch.

The way something feels to us can be one of the biggest hurdles of all to overcome.

Let us start with over stimulation or hypersensitivity.

For many of us bathing is a very distressing experience. The feeling of our skin being wet, or slick with oils and lotions, the feeling of powder slipping and spreading lightly over our skins, or the use of cloths, sponges, brushes, or any of the numerous tools sometimes used during a bath or a shower can cause immense distress. The feeling of the water moving over us as in a shower experience can cause fear, anxiety, actual pain, cause panic and an immense desire to escape the feel. As children, bathing chores are signals to fight against the sensory overwhelm.
Please understand that not only all the ‘feels’ of a shower or a bath are ‘wrong’ or distressing to sufferers, but add in the sounds, the lights, scents and other distressing sensory input and perhaps our resistance is more easily understood and perhaps even cause for a bit of sympathetic insights in devising plans to ‘get the job done’ with least discomfort to the person who must bathe ( shower, shampoo, brush teeth, clean or clip nails, etc.)

Resistance to many situations is probably more likely due to sensory struggles than it is due to deliberate disobedience or obstinancy, or naughtiness. If we are fighting your ‘agenda’ it is more likely due to the sensory distress that your plans for us will bring upon us.

Many autistic people are acutely sensitive to the clothing they must dress with. Seams on socks, cold prickly zippers, sticky labels with pointy sharp edges, garments that are stiff, scratchy, itchy, have seams, are fluttery/noisy, crinkly, too tight in the wrong places or too loose or flappy/flowy- can all cause the person wearing them pain, anxiety, distress, discomfort. No wonder those little kids can’t sit still!!!!!

Many hate the feel of a breeze or wind or water on their faces, arms, exposed legs or torso.
We may hate the pressure of hats or scarves or fear things across our face even momentarily. I remember how difficult it was to wear glasses as a child, even though I needed them desperately. I simply hated the feeling of pressure across my nose and resting on my cheeks and digging into my ears.

Sudden touch, touch of either light or heavy pressure, the feeling of being squeezed or tickled or pinched can send us over the roof with anxiety and fight/flight.
Some respond with relief to overall pressure such as hugs, wedging oneself between cushions or in any small place where we can give our bodies more pressure will be soothing.

On the other hand many will panic and feel trapped or overwhelmed. Trying to imagine Temple Grandin’s famous “squeeze/hug machine” and its use on myself gives me shudders and makes me feel panic.
Weighted blankets work for those who may seek sensory pressure, as will compression clothing or bandages…. the idea of any of those will send others ( like me) into fight/flight at even the thought.

Issues of touch can be tied into proprioception and struggles in processing what we feel. I must touch a wall or rail as I go up or down stairs to ensure I know where my body is on that staircase. I rely on feeling the pressure of my body weight with my feet firmly on each step before I proceed to the next one. If I walk from a room to another, my hand touches the furniture and the wall to make sure I am negotiating the space safely. I was repeatedly corrected to “keep your hands to yourself” or “keep my grubby hands off the wall” or furniture because those who cleaned behind me found my hand and finger prints annoying.
I have a poor sense of where I am in relation to my location in my world at any time and my sense of touch helps me keep upright and from crashing into things.

Texture of carpets, blankets, clothing, upholstered furniture all caused problems for me when I was quite small. I remember one house we lived when I was age 1 to almost 3, in which the living area included an ancient wool carpet. I refused to play on it repeatedly, much to my mother’s annoyance since I always moved to the edge where the cool smooth wood floor was not prickly and sharp. I was then in the traffic zone and underfoot. But I had solved the issue of the painful carpet. The sofa we had at that time was covered with tiny tufts of nylon and very bristly to the touch. This too caused me distress, and it was difficult to make me sit on that thing in a dress or a pair of shorts/sun suit… I didn’t mind when I had on the winter clothing which protected most of my skin from such insults. We had that sofa for years and I remember the color, the rows of bristles of the fabric, and the smell and the feel of it with no pleasure! I don’t believe others experienced that sofa the same way.

For me one of the worst things is sudden touch from strangers. Don’t get me wrong, I dislike touch from those close to me too, unless I have time to prepare for it.
( slow touch can do this too- I can’t stand the idea of massage… a stranger touching and rubbing, pressing, etc etc on my body is just unimaginable horror, even though I can imagine the horror part very well. )
I suspect that some of that comes from the association of sudden touch with motherly spankings and siblings’ torment such as tickling and pushing associated with aggressive treatment of my very early childhood right on through adulthood. “conditioned response”? But still the immediate first reactions to avoid touch could be because it is simply too alarming. I am afraid something I don’t understand is going to happen before I have any idea what that ‘something’ will be. Usually it was some sort of discomfort, so that sudden touch is first alarming. I don’t have time to prepare for whatever is coming. Maybe it is instinctive. I doubt many people welcome sudden touch.
My reaction is simply on the more extreme end of things. I startle very easily and am constantly hyper vigilant to avoid situations where I will be startled or grabbed, probably because of my hyper sensitive initial reactions as a child and the pleasure so many people over the years have taken in stimulating that response for their own purposes?

Texture of foods and the way they feel in ones mouth is something that is repeatedly discussed on the online forums I participate in. So many people avoid foods because of the texture, rather than the taste… too sticky, gummy, too hot or cold, too greasy, crunchy, stringy, slimy, gooey,chalky, chewy, lumpy, grainy, runny, chunky….

You name it, somebody somewhere in these forums have lists of foods they don’t like because of the way they feel in the mouth or going down one’s throat. It would be interesting to take a poll to see what foods repel the most of us and why. For many autistic people sensory issues can interfere with eating and cause dietary problems, failing to get proper nutrition due to avoidance of things disliked due to texture or feel. ( add the way things look or smell or tastes to be avoided and you can see how distress over the way a food feels can contribute to the struggle )

Understimulation of the sense of touch can also cause problems for us. Many seek pressure, seek sensations of hot, cold, or cause pain simply for the experience and possibly for endorphins released due to some pain inducing behaviors.
Self injury is one of those frequent autistic behaviors that are often not discussed on open adult forums. There is a deep sense of shame and self blame, fear and anxiety, and emotional pain surrounding the person who seeks sensory stimulation by self injury, and most are afraid to discuss this issue for good reasons. The social stigma of such damaging behaviors is real and strong, and I believe many are afraid to bring this issue to the forefront or ask for help because of shaming and blaming that goes along with it.
In the near future I will be discussing this issue involving the sense of touch and feel in greater detail.


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 in the Elderly population

How many people are we talking about?

I started wondering yesterday just how many people in the US population 65 and above were likely to be autistic. I have used statistics from the Washington DC based Population Reference Bureau( PRB) to try to figure this out.
According to PRB there are currently 52 million adults over the age of 65 in the United States as of 2018. Our life expectancy is 78.6 years.
Using only these figures and not adding all the missed diagnoses and undiagnosed people under the age of 65, and using the often quoted average of 2 percent of the population as being autistic, I came up with at least 1,040,000.
That many adults may be considered to be Autistic without diagnosis, although of course some of us are now finding diagnosis as autism and its hallmarks are becoming better known.
If we add in the population of adults who are younger than 65, to include the adults from all the years before 1980 when autism was first listed as ‘infantile autism’ in the DSM, you can see there is a need for diagnosis in adults now reaching middle age as well.
If you know 100 adults over age 50, you know at least 2 autistic people among them. My high school graduating class just celebrated its 50th anniversary. There were just over 200 people in the class ( 229). I know I was one of the autistic people in that class and I think I know of at least 2 others who, looking back, would probably be diagnosed as autistic. I wonder if they have any idea they are autistic, or if they still struggle with issues not understanding why, or having tools that could help. How many of us will end our days not ever being aware of why we struggled, never understanding the neurological condition that affects us every day and knowing our problems are not a matter of character, morality, goodness, evil, or inner strength, and never knowing that all our supposed/ believed/ blamed by family and society’s pointing fingers of shame…. never knowing what we think are our personal failures are not our fault?
How many of us need the tools that knowing about our autism provides? I know from personal experience how much better is life from the other side of autism and understanding how it has affected me, affected others through my behavior, affected my life, the choices I made, the things I believed, the things I do… everything looks different from this side of diagnosis. It has made a world of difference to me. I would love to know that others like me, even this late in life, could find the utility of new ways to live, peace and understanding that comes with diagnosis of autism.