Autism as disability

my autism is NOT a gift or a simple difference, not an “alternative” I would ever choose.


Yesterday was a mixed bag of experiences, overwhelmed by the loud Christmas music my husband delights in playing this time of year, I figured out that the booming base was what was the most triggering of my anxiety and was able to lower the setting so that I could cope.

I was working next door in the kitchen and the base was simply overwhelming while my poor audio processing garbled all the vocals and left me scrambling to try to keep up with the tempo of the constant change of tunes. This is difficult to explain if you have not experienced it… sound can be simply overwhelming in many ways.
I did better after adjusting the volume and especially the bass settings to very very low.

At lunch my husband spent a lot of time explaining the setup of a “new to him” comedy he has begun watching on TV and really enjoying . His delight at the setup and the performances was so evident!

It was hard to keep the multiple characters sorted in my mind, lots of players in this program.

I generally do not watch TV because the audio and visual input are usually way too quick and my understanding and processing of images gets left way behind.
I confuse characters as soon as the set changes, the location of the characters or the costumes change. (prosopagnosia does not help here!).

I feel I miss out on so much and I see how much pleasure he gets out of some of these programs. Let alone the enjoyment we could otherwise share by doing something together, even as simple as watching his favorite tv programs.
So when spouse invited me to watch his program, meaning to share the fun with me, I agreed.
I would love to spend more time with him and it was so obviously important to him that I appreciate this!
I was able to watch about 7 to 10 minutes of it before I became completely motion sick.

The camera did quick switch and focus for every interchange of the many characters as they spoke.
I had to keep asking spouse for explanations of what the characters were doing, which one was which, etc etc.
I had to beg spouse to excuse me and forgive me, I felt physically sick and growing sicker, nausea, dizziness, headache…growing worse by the minute, although I could see and appreciate his enjoyment of the program.
He was kind and understanding and I don’t think he was hurt or offended since he does understand my perception problems . I think we were both disappointed.

I went to my quiet nest ( recliner in the bedroom where I sleep far away from the TV) and I began to recover and then began to read, but felt overwhelming sadness at the fact that I must be so limited in so many things that might help our relationship build strength and develop deeper companionship and understanding. I have missed so much over the years! We have missed so much!

I was sad, am still sad, for all the missed input I lose by not being able to process videos, movies, tv programs, etc and all the ways that I could have to share time and pleasurable experiences with my partner and others through shared activities.

My inability to process visual activities and sounds related to entertainment and education leaves me far behind many people who use these venues daily with never a thought.

Yes, that is a true disability. Not understanding or being able to keep up with what is happening in “real time” or using these things to enhance and share experiences with others is truly difficult and when I stop to think about it, and I can see so completely the many ways this inability is a huge loss of opportunities, insights, information and shared experiences.

I am stopped, blocked, frustrated, sad and sometimes so very sorry for my personal losses due to my sensory processing problems. I do try not to dwell on things that can’t be changed, but sometimes I am forced to notice how very “different” I am.
Yes, I am disabled . There, I said it!

Today I went to the Facebook page I moderate/admin and somebody had put a huge video up about how ” autism is not a disability, it is just a difference”. I took it down. This is a political football that some autism activists are pushing in many media formats today. You can find multiple posts, arguments and discussions all over the internet. Is autism a disability?
Take a look and decide for yourself.

When I am so different that I must find ways to keep from being physically and emotionally distressed, being both sick and overwhelmed, when I must ask for help to be understood and ask for accommodations for helping me be accepted, to communicate, and to function satisfactorily in ways that others may be able to take for granted, I do not see how in the world this is just “alternative neurology” and NOT a disability.
Perhaps others have more imagination. I simply can not find a way to appreciate that “just different” thing. There is way more to it than that simple dismissive statement.

The videos and writings of this sort are so frustrating and humiliating, they declare loudly that “we are not disabled”, then ask for special attention and accommodations because they are so very different. but it is just an alternative neurology, not something that we struggle mightily with every day in so many ways where others do the same things completely and easily, fully naturally without special setups, supports, accommodations, tools and accessories, special training, programs, etc etc etc.
I think of the autistic individuals who are brothers and sisters of my heart and soul who have so many more struggles than I do, so many really intense problems from intellectual disabilities, inability to speak, or read, or write, I could name a thousand ways so many of us struggle every minute of our lives with our simply different neurologies, no its not simple at all.


Nope, this does not compute. People of all abilities and neurologies deserve respect and compassion, kindness in an ideal world would always prevail.
But to deny that our disabilities are not disabilities at all is to deny our struggles, our painful interactions, our difficulties in doing what comes naturally and more easily to others, and to deny our existence and our histories, our painful interactions of the past, and the very difficult passage through our lives that so many autistic individuals have all our days on earth. That denial is so painful and distressing on so many levels!!!!

My autism is a disability every single day.

I can’t be the only one who experiences autism in this way, even though our individual neurological struggles may be very different.

Autism Diagnosis can be life changing.

Approximately 6 years from my first suspicions about a possible diagnosis of autism, and 3 years from actual professional diagnosis, I am taking inventory.

How life has changed! It is difficult to be specific, since changes have taken place gradually as I learn more about myself, the nature of the neurology I have been given and how it has affected everything in my life from my birth onward.

Diagnosis first of all , self understanding of my autism, was a series of “aha” moments, small discoveries that added up to the conclusion that I was/ am indeed autistic began with those descriptions of autistic thought patterns, physical and emotional struggles with misunderstandings, misperceptions, and poor performance. One by one, the light went on. “I do that” “so that’s why” “Oh, that makes so much sense” as the series of autistic diagnostic criteria and discussions with others revealed details about the ways we experience our autism .

At first it was very difficult to understand that each of us experiences our autism quite differently, and that we experience certain aspects of “performance deficit” “problem behavior”
“processing problems” “brilliant and highly above average performance” in varying aspects of our lives. It was hard to figure out what I had in common with so many autistic folks on the websites with autism descriptions, on the blogs I read, on the discussion groups where people talked about autism in so many ways.

One thing that helped a lot was to try to remember all the problems I had in childhood. Misunderstandings, Hurts, discipline for being “bad” even though I never believed I was doing deliberately all the things I was blamed for, Problems at school, being bullied, all went under my mental metaphorical microscope to be examined closely. I came up with loads of struggles and hurts from the past.
This exploded to upsets of my young adulthood and right through my present day more recent problems. It seems certain experiences followed me right through my life, being uncoordinated, being bullied, making people angry without a clue as to why, diligent research and activities directed at specific life long interests (horses, humane issues surrounding domestic animals) super high word skills both in reading and writing, very very poor performance in other areas of life skills.

It started to add up when I was able to compare what other autistic folks described and explained as their autistic experiences. The diagnostic triad, social struggles, communication struggles, and rigid patterns of behavior and thinking added up to my own brand of autism once I was enlightened enough from painful search of my past to see it.

Suddenly I could see how autism was behind so many of the painful experiences of the past. Everything was not, after all, “all my fault” as I had believed in my soul… I had been told and punished for misbehavior, deliberately being bad, causing trouble, having disappointing school interactions and grades, being in general a nuisance and a problem which must be punished repeatedly and still failed to perform or conform. I was a huge disappointment, a behavior problem, a bad person! No longer!!! What a relief to finally understand how autism had its works in the past and nobody knew!

I have less emotional pain, since I learned how to sort old painful experiences that replayed constantly in my mind, causing anxiety and emotional upset over and over. I learned how to file such memories under “finished business” in my mind after sorting them from the new perspective of how autism had worked without anybody knowing or understanding. If there was nothing to be done about the specific painful memory today, it went into that metaphorical mental file. Every time that painful memory came back up after that, I simply stopped it as best I could and said to myself “that is finished business” and sent the memory back to the file. There is a detailed description of this process elsewhere in these blog pages.

I have been able to see how autism worked, file old memories that caused repeated pain (so many of them it actually impaired my life) and best of all I have been able to forgive myself and others for all those events because of course, nobody knew!!! Such a relief!

Knowing my diagnosis finally gave me the perspective/platform to see all those old events and the beliefs and emotions surrounding them in a new way. So healing!





Learning about my autism neurology, and finding my worst struggles, gave me the opportunity to think about how I could do the things that were hardest for me in new ways. I could adjust my activities, my surroundings, my ways of doing things to make things go more smoothly and be less distressing every day. I recommend that we tackle the very hardest and most painful things from every day life first, and as we realize we are stressed and distressed, continue to make adjustments in the way we do things for daily living, for special events in our lives, special projects or holidays, vacations, how we handle anything that is physically or emotionally distressing for us.

Having made many adjustments to my schedule, my activities, my social interactions, etc, I am feeling far less stress and anxiety, and finding more peace and ability to give myself comfort and adjust even small details to make life continually more “doable”. I don’t spend all my time worrying about “what if”. I am learning I can handle almost any situation I choose to put myself into and that my life will go on usually with no permanent damage if I make a mistake. ( that was a huge one! )

We can make so many choices over the way we want to “do life”. First we need to understand we do have that power within us, that we can figure out better ways to do almost anything. We can ask for help if we feel we can not do this part alone.

Others in your life may resist change or cause difficulties for adjustments we may want to make. Things can generally be negotiated and compromised and support can be gained, but it is unfair to make demands on others that everything in their lives must change completely as well.

Find yourself a good support group of older autistic adults, there are many many of them “out there”.
Ask for insights and suggestions about how others have solved problems surrounding their autism.
Ask first, if you need to, for explanations about whether the struggle you are facing is somehow common to other autistic individuals.
Forums are such a great source of so many years actual lived autistic experience and it is great to find out you are not alone, that there are others who actually understand!

I will not name support group forums because there are hundreds and the ones I like may not be helpful for you at all.

There are all sorts of autism support groups from age related, gender related, politics and social justice related, medical basis groups, and more.
I had to try maybe 15 or 20 of them before I found one I consider my autism home on the internet.

Make sure the group you join for support is just that, a social and emotional support group. There are information groups, study groups, news groups and of course thousands of blogs and social media pages. See which sort of group it is in the group’s rules and descriptions for best results!

There are chat groups, in person support groups, and so much more. You don’t have to do this alone, there are so many resources and options available. don’t give up, you will find something just right for you out there.

If you are just getting started, I wish you well on your journey of self discovery. Even after 6 years from my first self understanding of my being autistic, I am still having insights and learning new and better ways to do things. Even at this old age of 71, things keep getting better, less painful and upsetting and healing. I’ll be sorting the first 65 years for the rest of my life, but it has been so helpful to know. Diagnosis can be life changing. May all good things come your way in the impending new year.

Autism Stims

hidden stims revealed

We know stims are self comforting devices we use to help regulate our behavior and to provide good feedback when we are feeling stressed, distressed, or simply need comfort or more ( or different) sensory input than our current status. It is a device of self input that helps us feel able to cope with whatever demands life is making at any time.

Older adults have spent a lifetime trying to change their stims.
They have been told to keep themselves quiet, stop that, don’t do that, and frequently not only chastised but sometimes punished or physically controlled by others through touch or application of physical restraints, etc.

As an example, I used to suck my thumb when I was little . Approaching age 4 I was pressured in many ways to stop sucking my thumb. I was scheduled to go to kindergarten and there was fear I’d be mocked or ridiculed for thumb sucking. The campaign of many adults pressuring me to stop sucking my thumb was eventually irresistible and I stopped sucking my thumb. Instead I began picking fuzz from my favorite blanket when the scent of the blanket and its softness did not comfort me enough. I like the way it smelled and soon began putting the fuzz in my nostrils to smell the “blanket smell” better. That became inconvenient because I was not able to carry the blanket with me wherever I went to comfort myself. that comfort behavior was switched to my chewing my finger nails. I kept that habit for about 7 years, when social pressure made me self conscious about my grubby hands and nails (public shaming every day by one of my teachers in middle school). I began to chew gum and got scolded in school, so I switched to chewing toothpicks, then sunflower seeds, and finally discovered jawbreaker candy which I could sneak into my mouth in the change between classes and which would give sweet comfort all through class without anybody ever suspecting, if I was very careful! I had to give up jawbreakers after suffering bad and broken teeth, and for the past 40 years have been over-eating instead.

This took a lot of mental sorting to find the pattern of the hidden stim in the past, from its origins to today.

How many evolutions have stims passed through in your lifetime? Do you substitute alcohol, drugs, super intense hobbies or activities of any sort for what was once an innocent childhood stim?

If your current stims are hidden it may be a bit of difficult emotional homework to dig deep and discover the links to attempts to find self comfort and self regulation and still be “socially acceptable”.

I was re-reading info about adult stims the other day, and laughed out loud with a sense of “aha” discovery. Explanation following :
Stims can be had from arranging and re-arranging things, From moving things about, from changing visual patterns or even concentrating on various images or things that move and create pattern, such as watching a ceiling fan or the motion of a spoked wheel, or looking at op-art or other strong visual patterns. Since my stims are direct and physical, I had not thought very long about this form of stimming.

I want to relate something from my sometimes very exasperating and frustrating childhood.

Our mother was perpetually obsessed with trying to make our poor, low income, tired and shabby little home look elegant and sophisticated.
In this quest she continually decorated with new details, dyed the furniture covers, throw pillows, Bolsters, or other items she sewed.
Mother made elaborate arrangements of fruit, flowers and other displays on the table or in other places.
She used us ( me and my sibling) as “moving crew” and perpetually had us dragging furniture from place to place in our living room. “put it there” “oh no that doesn’t look right, move it over there” “no that’s not right either, try here”. This could go on for an entire afternoon.

My poor father came home to a different house many days of the week. He never knew where his favorite chair would be, never could appreciate the “new look” which was always clever, creative and satisfying to our mother, and exhausting to us as her furniture movers, cleaners and physical laborers.

I laughed out loud when I realized that all of that had been our mother’s stims!

Think long and hard about some of the things you do that are very characteristic of yourself. Are you practicing a moderated version of a stim???

Autism Self Regulation

Self control,

Lately the autism “buzz word” is “self regulation”. I see constant reference to self regulation in articles, in comments, on blogs, and in discussions in groups. Time to update my autism vocabulary. What is self regulation???

When we talk about self regulation, we are talking about self control. This is not as simple as it might seem.

In order to have self control we must recognize our emotions, acknowledge them, and decide on an action to take or decide to do nothing.
This is actually a form of executive function where one must know one is angry, sad, upset, unhappy, jealous, insulted, afraid, etc. We first must learn to recognize our own feelings. This is very difficult for many autistic individuals for many reasons!

When we have our most powerful emotions, those that overwhelm us, our reactions often come in the form of response to trauma. Fight, Flight, Freeze, and sometimes those of us with long term adaption to trauma also fawn or appease.

In order to avoid disruptive interactions, melt downs, or confrontations, it is good to be able to recognize our emotions first, before they overwhelm us.

In many cases this is a skill we can learn.

We can learn to overcome poor interoception through counseling, therapy, and perhaps through self examination and becoming aware of our neurology.

We can also control our physical surroundings by changing them, by leaving them, by doing something different within those surroundings in times of stress or distress. (listening to music, wearing headphones, meditating, exercising, etc).

All of these things are part of self regulation.

We regulate our responses our own bodies have to our emotions… when we get angry, we don’t have to beat ourselves or somebody else up, we can go for a walk, take a hot shower, remove ourselves from the company of those who are upsetting us, choose to ignore the upsetting thing or confront it in a healthy manner instead of allowing ourselves to get overwhelmed, have a melt down or a shut down. WE can change our environment, we can change the way we do things. First we have to recognize that we are upset.

If meltdowns are common, or shutdowns, if we have rages or self injure while we are upset or over stimulated, we can many times learn to recognize that we are in distress before we reach that point of absolute overwhelm. This might require professional help.

When we recognize the very first signs of upset or overwhelm, a change in breathing patterns, general anxiety, tension in the body, agitation, restlessness, we can take steps to acknowledge we are becoming upset or over stimulated, and we can take steps to prevent losing control.
That is self regulation.
If you have struggles with meltdown and overwhelm, read up on how to recognize your own emotions, learn your body’s response to distress and stress. Talk to a counselor or therapist (some occupational therapists specialize in emotional recognition and self control techniques). Some people report that the use of biofeedback helps!

We can learn to recognize our emotions and we can find ways to help ourselves regulate emotions.
We can avoid outbursts of physical responses and change our environment to avoid rages, meltdowns, shut downs, or similar behavior/trauma response struggles.

If you have trouble recognizing your emotions before they build to being overwhelmed, ask for help. You don’t have to do this alone!

Autism vs Neurotypical

“us vs them ” thinking


This gets into autism politics. So much of life is surrounded by politics, arguments, anger and division.
It is inevitable this will happen with issues surrounding autism too. There is already a tendency for those “on the spectrum” to have rigid thinking. Many times its is good or bad, one thing right, the other automatically wrong, “black and white and no shades of gray” thinking.

I spend a lot of time on line participating one way or another with groups of autistic individuals. I am a blogger, a forum pages moderator, and administrator of one page with many members. I spend a lot of time searching for autism information in other forums, on autism discussion pages, websites, studies, papers and presentations, etc.

I am noticing a trend to more and more autistic anger and to thinking of non autistic others as “the enemy”. It leaves me distressed and sad that so many people are choosing to fight rather than try to understand from other points of view, but autism inflexibility may be behind some of this behavior too.

I am turning down posts that are all about how “they” are wrong, bad, unhelpful, trying to keep us down by imposing labels or describing and defining behaviors, gait, speech patterns, or other autistic traits.

I am being attacked and accused of “supporting the enemy” because I use certain words or phrases, refuse to post hate posts against “them”, etc.

I think it takes far less energy and effort to decide to hate and to blame others than it does to work out the differences, understand the struggles behind the work going on in understanding, defining, and yes, helping autism and autistic individuals.

It seems to take far less energy and effort to attack than it does to search for solid information and do your own emotional homework to actually understand oneself and one’s past than it does to blame others and to place oneself as a victim , a hero, and not have to take any personal responsibility for one’s trials, tribulations, history or even one’s future.

We are not responsible for our given neurology, or for any other thing we have had since birth, our physical functions, our appearance, but to hold others responsible and blame them for our problems is ridiculous.
Some autistic people expect and demand accommodations and support while on the other hand trashing the motives, thoughts and ideas, attempts by other individuals to define, describe, and to help others. The things some autistic individuals are active in promoting are destructive and definitely not helpful.

Calling for and feeding/breeding/promoting hatred and anger is not constructive or necessary.

Blaming and attacking those whose ideas are in any way different from one’s own never solved a thing.
The old saying about “being a part of the problem or being part of the solution” has some merit. Which side is the healthiest and most useful to be on? Choosing to attack and destroy, or choosing to search for answers to build knowledge, promote compassion, and to find healthy solutions “should be” a clear and obvious difference.

I have a very hard time emotionally with hatred and can not understand those who make “us versus them” choices. How does causing more pain and destruction help you feel better about yourself or contribute to a solution? (rhetorical question)
I hope that more people will choose to try to work together to make every struggle surrounding autism easier.
If we are not “all in this together”, we surely need to be!

Diagnosis makes a Difference

3 years from official autism diagnosis

and about 6 years since I began to suspect that I might be autistic.

I have spent so many hours online reading about autism in studies, reports, articles, and interacting with the autistic communities online. I have learned so much, been able to forgive myself and others, and to have new and much better understanding of my past and my self, both strengths and weaknesses. I have been able to learn new ways to compensate and to make my own life better, easing struggles and finding new and better ways to live.


I had a test of my new diagnosis and self insights as I interacted in a “real life” group of people I had only previously interacted with online.
There were 6 of us including me. We shared activities, communication and meals together for a week.
I kept being amazed at my better understanding of the social aspects of our interactions and at my ability to “read” intent in the others and to better understand what was happening as I observed the others interacting.

10 years ago I can’t imagine this interaction and sharing having the same outcome.

I have grown so much in so many ways with the insights that knowing about my autism and my strengths and weaknesses has given me. Don’t get me wrong, I am still socially awkward and I can remember several times in the interactions that I was quite socially inept or accidentally inappropriate. But I don’t think I annoyed or enraged anybody the way I would unknowingly have provoked those responses 10 years ago.

Part of the outcome of the week’s play with others of similar interests is a feeling of enjoyment and triumph.
Serial fun without shame or regret is not something I have been familiar with up until now. Without the self understanding that diagnosis brought me so late in life, I doubt that this gathering would have been half as successful.

Here’s to older adults finding diagnosis, insight and self understanding.

My entire life and world has been changed for the better because I was able to learn about my autism.

I wish this for every autistic older person struggling with so many things in life and wondering why, why, why life seems so easy for others and is so very hard for themselves. Diagnosis can be life changing.

Feeling Safe

Safety is a basic human need.

This might seem obvious to a lot of folks, but bear with me, it struck me as something not everybody might have considered.

I participate in several online forums about autism, mostly these groups are aimed at older adults since my parenting days are over. I am still fascinated with learning about autism and finding clues to my own past and using new understanding to improve my life going forward.
I hope to share insights here that might help others.

When I started this blog I wanted to be
a sort of information sharing resource so that those older adults new to autism could find out more without having to spend countless hours on research and analysis of facts.
I do read papers, articles, studies, presentations, books, and spend many hours a day doing this and interacting with other autistic adults on line.

If you question statistics or information I provide please send me a message and I can provide links for you to look it up yourself, etc. I am interested in fact based information and prefer to use well documented sources when possible. reading other blogs and interacting with other autistic folks online helps give perspective and insights which I would not otherwise have, and heaven knows most autistic individuals love to share information!


I am still exploring ways to serve those of us older folks who are just discovering we may be autistic, helping find diagnosis, sorting out all the “what next” questions we have.
Since I am only recently diagnosed myself, ( coming on 3 years ago now- amazing!) I am continuing to explore new ideas and insights into my own life as autistic.

I am looking and finding new perspectives on almost every aspect of my own past.

I am still pulling insights out of remembered experiences, seeing them in new ways and having that wonderful “aha” moment of finally understanding one after another emotional “thorn in my paws” from my past experiences.

Last night as I waited for sleep I began to think about some of the members of groups I participate in. Some are so angry! Some are so defensive! Some are so completely distraught, caught in grief and suffering! What could be done to help? Why are these people seemingly trapped in these cycles of pain and upset?

I have been reading this morning about rumination and perseveration. I have been reading about basic human needs.

Perseveration is when we continue and persist as a pattern of thought and or behavior and have a habit or cycle of repeated thoughts, feelings, actions, which become almost automatic responses in certain situations. It is part of autism’s “rigid thinking or behavior” which must be present in order to obtain diagnosis. Not all perseveration is bad, but it can make it more difficult to break patterns of unhealthy thoughts or behavior which are not helpful or healing, or which causes us more struggles and pain.

Rumination is perseveration of thinking, cycles of bringing certain thoughts, beliefs, ideas, memories or emotions forward into our minds and working at them over and over.

We can develop a mind set of feeling resentment or anger over what we see as unjust treatment from others.


We can re-live moments of multiple experiences of emotional or physical pain, re playing the hurt and the frustration, the despair and the trauma of previous experiences.

This can be true of each of us in different ways depending on our lives and how we have interpreted the things we think we understand and what we believe.

We have all met people who seem to be consistently angry, looking for reasons to fight,
belligerent souls who seem to have “a chip on their shoulder”.
Anger is never under the surface for long. I realized these people are trapped in perseveration of the “fight” part of trauma response series: “fight, flight, freeze, fawn” . They seem to feel they need to constantly defend themselves over everything. They are always ready to attack any perceived insult, feeling of threat, opposition or disagreement. It is all personal, it is all over anything seen as a challenge or an obstacle to one’s ideas, thoughts, desires or activities. They react immediately by getting angry. They are hypervigilant to protect themselves and their interests, or of those they care about.


We have all met people who are always sad and who never see anything as good. They are worried about everything, afraid of what will happen next to make them feel used, abused, neglected, abandoned, or otherwise in emotional pain and insecure. They feel the injustices of the world, they often cry or feel constant suffering and misery. There is constant worry and fear.

These sad individuals dwell on “what next?” “what will happen if” and constantly anticipate the next trauma. They are frozen, waiting in fear for the next painful event and feeling helpless to prevent it.
I have realized these folks are trapped in perseveration of the trauma response of flight, freeze or fawning, simply waiting in dread for what they are sure is coming their way and expecting it all to be bad.

Sometimes we might meet somebody who has both anger and sadness.

I must say I relate and have been a perseverative thinker in the past.
I had habits of rumination about being treated unjustly, rejected, scorned and punished without ever knowing or understanding why these things happened. I believed I was singled out for such things, and I was right! I had deep sorrow over being so mistreated and misunderstood. I thought constantly about how hurt I felt and how sad I was that I could not change it. ( I was wrong about that!)

The rumination began, I believe, as an issue in my mental and emotional processing because I was trying so hard to come up with reasons WHY and to find ways to escape or overcome these experiences.
Autistic rigid thinking kept me from seeing I had alternatives to the strict pattern of behavioral responses I had learned in an unhealthy environment growing up and in the first part of my young adulthood. I simply could not see that things might not be the way I understood them and that the way I responded to all my life experiences could be managed in multiple other ways.

The problem was that I had developed misunderstanding of so many things about what life actually “is”.

Nobody knew about my autism or that of other family members, nobody understood the family dynamics that brought me to being such a dysfunctional mess as a young adult.
I had no alternatives but to use my own understanding and develop my own survival behavior even as a young child before I could speak.
I did not understand human emotions or behavior, I did not understand how it was that I always made others angry, or why they reacted the way they did.
I did not understand what I was persecuted and punished for, except that people said I was bad and evil and mean and deliberately did all sorts of things to them to harm them, hurt their feelings, make them feel bad! I could not understand how that was so.

Simply put, I was not able, by myself, to understand so many things without an outside interpreter until I got therapy and had so much of it explained to me. This was long before my autism diagnosis but even not knowing about the autism the therapy helped me understand much I had missed growing up. I got a lot of good explanations about healthy behavior and learned communication skills.
The biggest part of my own perseveration was fear of not being prepared for the perceived onslaught of anger, punishment, rejection, abuse, and scorn. I thought about it constantly, was quite sure i had been misunderstood, (not realizing I also misunderstood others) and I had absolutely no social skills or “tools” for communication to help myself. I was unable to see beyond the cycle of pain and upset and unable to do anything for myself but dread and remember, preparing myself for flight and becoming more and more submissive, hiding and feeling so anxious, and becoming more passive and people pleasing, appeasement responses.
I learned those responses as a helpless child and until I was taught that I had alternatives I could choose, I was trapped in that cycle.
When I began to learn I could choose my responses to others in any situation and that I could safely and successfully say NO, my life began to change.

I believe this will be the same for those of us who are trapped in anger. Life has been a fight, everything has been a struggle and a confrontation. Mindset says that one must be constantly prepared to defend oneself, to fight for rights, for access to what is needed, for recognition, for every little corner of life, one must defend oneself and one must push forward to make sure one is heard and responded to. I have not experienced this particular pattern of perseveration but I think I can understand it. I am thinking that explanations and teaching healthier self assertive communication could help with angry people’s rumination and perseveration too.

Now I come to the point I am going to make. Perseveration of emotional rumination seems to be a response to trauma and fear. It seems to be an attempt to understand and prepare for the next traumatic event. (in other words it seems to me to be a form of hyper vigilance, where we repeat these feelings over and over trying perhaps for better understanding of “what happened” as a way of being ready for the next trauma, which we are sure is coming soon). These behaviors must be based in the experience of fear.


I have said repeatedly that I have lived my life in fear. It took at least 40 years before I began to feel safe in even part of my life. I was afraid of the consequences of every single action I took, every single day. I dreaded the potential for drawing attention to myself and thus exposing myself to attack. I was afraid at home, I was afraid at school, I was afraid going anywhere in the car or walking in the community where I grew up and where I lived later. I feared encounters or interactions with others, I feared saying the wrong things, being caught in the wrong places where I could not find shelter (being bullied in quiet corners of school or being attacked walking down the street, playing on the playground, reading a book or playing in some corner of my home growing up), etc.
No place was safe. No person was safe, There were no alternatives but to face these things alone and not understanding how I could do anything differently until as a 30 year old I got a few basic explanations and began to find ways to make myself safer.

I have been reading about Maslow’s hierarchy of needs.

Look here! https://www.simplypsychology.org/maslow.html#:~:text=There%20are%20five%20levels%20in,esteem%2C%20and%20self%2Dactualization.

Those of us who did not feel physically safe, who grew up hungry ,( who worried even as small children about our homes and our security without the protection of the adults in our lives, and/or who were often victims of physical and emotional abuse), who because of our autism were perhaps more traumatized by these experiences than a child with “normal neurology” developed our own ways of self protection and care.
No wonder we could not feel safe!
Note that feeling safe or secure is one of the most basic human needs.

Now we are adults, how can we change our lives, our situations, our selves to find safety?

How can we help those ruminations and perseverative beliefs we mostly gained in childhood or before our diagnosis?
How can we find the tools and the understanding of our world as adults so that we can help the helpless child in those of us who are needlessly suffering repeated replays of trauma and emotional pain?

Do you recognize yourself in anything I have written here today?

I think that is the first step to self understanding.

With self understanding, we can look for new ways to live our lives. We can seek out new skills to communicate, new insights to help find our way through the complexities of adult lives. We can find explanations, we can learn new ways.
We are no longer helpless. Diagnosis is the key to self understanding and self help. We can find safety and we can find healing.
I know I have left a lot to think about. The idea of feeling safe is so important. This is all so new in my mind.

More about feeling safe as I am able to process this idea and to find studies and information about this topic.

Ageing and Autism

Number of studies growing

Well, sort of……….


https://www.liebertpub.com/doi/10.1089/aut.2021.0041

Start by reading the article here. Since 2012 the number of studies about autism has grown. We are being studied and understood, but pay close attention to what is said here and look at the numbers !!!

Although extrapolation of USA Census and CDC information says there are over 5,500,000

adults in the USA with autism today, only a very small percentage of us have found professional diagnosis.

There is no idea or way to know about numbers of those of us who have found our own diagnosis and know of our autism without professional guidance. This number is growing as adult autistc individuals share information, post blogs, begin support groups and forums or internet pages with information.

The growth of information about adult autism seems to be in our hands because nobody else ( medical and support community, including researchers) is paying attention to this issue. If I was an autism professional I would think the sheer numbers of older autistic adults would be enough to persuade me to open investigations.

If there are needs being met and mined for profit in the younger generations, there are definitely financial prospects in finding ways to best serve adult autistic individuals as we age into the times when we need more specialized care that almost 75 percent of senior adults need.
The very few studies done to date show us that autistic individuals have more health care and housing and support needs than the average individual as we age.

There is very little interest in helping older adults gain diagnosis and support into older adulthood ( I use 50 and over as a “cutoff” age for referring to adults as “elders”).

The idea of using a new name to gain attention as a “tag” for this group of autistic adults is convincing and important.
A key word or words might help us find more information when we are mentioned in studies and articles.
Here is the catch. There is not more information to be had. Studies and articles must be produced and they simply do not exist in any number.

Very few significant studies have been done regarding autism and the elderly.

Very few are being produced today. It is mostly blogs like this, and online groups which are growing.

Information is being shared by autistic individuals for the benefit of other autistic individuals because it is not readily available in any other way.



Note the authors of this article proposed the word “gerontautism”.
Feedback from the community must not have been great because the proposed key word has been eliminated from the article.
This is going to be debated in the community as the idea is spread, and there will be many proposed key names or tags.

Many already use the phrase “autistic elders”. or “older autistics”.

The name for us as a group is less important than the discovery in this study that only .4% of today’s studies about autism have anything to do at all with ageing autistic adults.

Its not just the way we self describe, but more importantly that there seems to be such little interest in how this huge population of older adults is faring, will do in the immediate future and learning how society must change or grow in services and skills to support this population.

How will we prepare for our most difficult years and how will we accommodate and help our autism as we experience not only old age and all its disabilities and physical failings, but also our autism and the special and individual sensory struggles we must confront daily. ???

How will society train caretakers, provide housing and other care when we are no longer able to care for ourselves?

How will we train medical and support teams, how will we know what the needs of the autistic and ageing population are?

This is a plea to researchers to begin to ask tough questions about what happens when those with autism grow up? There are millions of autistic adults who are hitting the “elderly” mark of age 65 within the next few years. All of the baby boom generation will be over 65 by the year 2030.

More studies are being done now on young adults, but there is very little recognition that autism existed long before 1980 when the very first autism diagnoses were being done.

This is yet another call for professionals to become involved in research.

Time is getting short, there is much need.




Autism Crisis

Emergencies can happen any time!

As part of my passion to inform and support older autistic individuals I also participate in some online forums. These are for the most part closed to the public and are designed as support and advice for autistic individuals exclusively. As well, there are a few public autism forums where anybody seeking information and/or support can join in.

Something that seems to happen frequently is that individuals on these forums appear with very urgent requests,
PM me
, Message Me,
Help Help Help.
It is urgent and immediately concerning, heartbreaking to get such requests from others in far away situations and no be able to provide information or help in a crisis.
Many times those messages may not reach others or provide the immediate aid the distressed individual is seeking.
Forums are not crisis lines or emergency hotlines. They are not meant to deal with emergency or crisis situations.

Lack of response can be triggering and lead to even more upset.

I would like to suggest that everybody has emergencies, distressing things happening in their lives, emotional or physical crises at some point.

We all need to be prepared ahead of time to have resources available when these emergencies do happen.

There are all sorts of emergency hotlines and helplines available today.
We can summon an ambulance or a fire team, we can call suicide hotlines, domestic abuse hotlines, we can seek urgent help for financial support, housing, food, and much more.

It is not unreasonable to spend a little time compiling a list of local to you emergency numbers to keep in a place where these can be accessed quickly.
Police, Fire, Ambulance, help and service hotline numbers are easy to find today using the internet.
Please take the time to prepare for emergencies ahead of time.
Write a list of helpful emergency numbers before you need them and keep them handy where you can find them if the worst suddenly happens.
You never know when an emergency or crisis will happen.
Help yourself find support quickly before you need to make that call.

Autism in Motion

We all have proprioceptive struggles

Autism is being understood more and more as a neurological difference that causes our sensory input to give us different information than the way neurotypical individuals process such input. We are “wired differently” in our neurology from all of our senses, and each of us is different.

I went looking for more information about the way we move as compared to neurotypical individuals. Much has been made recently of “micro movements” that seem to be common in autistic individuals, and how these movements might interfere with NT intuitive interpretation of social interaction.
Instinctive rejection of differing neurology is done rapidly and unconsciously by others interacting with autistic individuals.
Much comment has been made regarding how this could possibly be the basis for autistic social struggles.

I have been reading about involuntary movements and also about autistic “gait”.

I wrote about this a bit in the early days of the blog. I had been surprised to discover just how odd my gait must appear to others.

Gait is being analyzed and understood today through the use of diagnostic tools unimaginable only a few years ago.

I am attaching a link to an older article that discusses gait analysis and diagnostic imaging of individuals with various neurological diagnoses.

Most fascinating to me was the included video showing these gait differences clearly. ( thank goodness it was a clear and slow moving image that I could actually process! )

I was astounded to see my own gait reflected in the image for autism in the video. I have always been clumsy and awkward and my mother constantly criticized my way of walking, forcing me to crawl on the floor moving my head from side to side (remember the “patterning” theory of development in the 1960s?) and walk for hours trying impossibly to balance a book on top of my head.
She hated my my posture, and my gait, even going so far as to take me to a podiatrist, wanting him to fix my funny way of walking.
I recognized even at the time that he thought she was causing my self conscious and timid, awkward movement to be worse through her constant criticism.
He ended up telling her I had an extra bone in my ankle and that I could not help the way I moved.

She left me alone after that, what a relief!

I don’t believe for a minute I have any extra bones, I was so grateful to him for helping to free me of the continual harassment and criticism.

I digress.

When staying overnight with a sick friend at a hospital for a couple of days just a few years ago, I had to continually walk down a hallway which had a huge plate glass window at the end of it. When it was dark outside, this acted as a mirror to reflect my image as I walked toward it down that long hallway.
I could not help but observe my gait and was amazed to see how very odd it was! I tend to plant one leg and to swing the other leg around it in a sort of semi circle. One leg (my left) is almost straight in flight, moving forward without almost any deviation, and I weave my right leg around this one removing it from almost directly behind the left and swinging it in a sort of arc, placing it in front of the left, Sort of a weaving motion.

I was stunned. No wonder people look at me when I walk!!! How odd! I knew my gait was “off” but I had not realized how it looked to others. WOW.

That recognition was a couple of years ago.
Today I was searching online for articles on proprioception and gait, as well as micro motor motions.

I found this article from a few years ago. https://www.spectrumnews.org/features/deep-dive/autism-in-motion/


Please watch it and look at the part where the motion of the autistic individual is shown.
Is there really a recognizable autistic gait?
That autistic individual portrays the exact same gait that I recognized in myself just a few years ago.
How interesting!
Are you aware of your gait?

What does it look like?

I am going to continue to search for more information about autism and our bodies in motion.