Making progress?

Autism diagnosis and ageing adults blog

I missed it, passed the 200th post in this blog!!!!

We are entering the 4th year of the blog and just celebrated our 3 years since my diagnosis anniversary.

The format for these posts puts the most recent entry on top, so to read the whole thing in chronological order, you will have to scroll to the last entry and read backwards! This will be the 209th post .

If you find the information here useful would you be so kind as to share the Oldladywithautism.blog address?

It seems urgent that autistic adults ageing in frustration and confusion and emotional pain be found so they too can finally experience the relief of having answers to all those painful “why” questions of the past.

I am feeling as if I am running out of time. Old age is creeping up and poor health is looming… I want to try to reach as many older adults as possible to inform about diagnosis of autism even in the latest stages of our lives. There is no way to measure the difference in self understanding diagnosis can make!

I know how much help it has been to know my diagnosis and how much my self understanding and understanding of others has grown from this new perspective. I know how much diagnosis has helped me improve my every day living through making so many adjustments and self accommodations, being able to see old problems “with new understanding” I wish this for others who have lived all their lives without knowing about their own autism.

I have been able to mostly overcome the many struggles and hurts, damage due to trauma, and for so many years simply not understanding just about “everything” due to my autism.

It has been such a relief to learn everything was not, after all, “all my fault” . I have learned new ways to “work around” the autism struggles I have to find new ways to live a better life with less frustration, struggle and discomfort. I have made a new network of friends, I have begun to live my “best life ever” since I finally found out about my autism.

Although diagnosis does not change a thing about our unevenly developed neurologies, it allows us to have the understanding we need to move forward with our lives and to make adjustments to all sorts of things which used to give us struggles… self accommodation is possible in many ways, once we know about our autism.

This blog was established as a sort of “adult training wheels” or beginners collection of info about the nature of autism itself, about the vocabulary, the neurology, the social struggles, rigid thinking, and repetetive behaviors that we all must have in order to be diagnosed as “actually autistic”. I wanted people new to autism to have explanations I was finding all in one spot, not to have to hunt all over the internet, the library, etc. to glean bits and pieces of information as I have been doing since I first suspected my autism6 years ago.

The blog is about how we can find diagnosis and then adjust our lives once we learn about our autism, even in very old age .

I hope you find what you need!

Please look on Facebook for “Autism for Older Adults” a public informational study group page about diagnosis, autism’s core features, and adjusting to diagnosis as an older adult.

There are lots of links and discussions about these things as well as references to studies, articles, groups, the latest autism information, and more. Some of the blog posts are referenced and re printed there as explanation, too.

Still feeling hopeful about the future as science learns more about autism and we obtain diagnosis and adjust to new and better lives because we have done so. as January 2023 draws to a close, may I wish you a better new year.

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!

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 diagnosis and Self Forgiveness

Late diagnosis of autism can be life changing

I read comments all the time from autism specialists and diagnosing doctors, comments made in discussions about autism especially among those who are not autistic. “what difference would it make?” “They have already lived their lives, they have already adjusted, they have made it this far” Even regarding oldest adults in nursing homes or in group living facilities of all sorts.

I want to point out that knowing about ourselves and understanding why we have had so many struggles, why things have hurt emotionally for so long, why our painful pasts were part of our every day lives and our wounds did not heal…. well, yes, that would be helpful to understand. Knowing the answer to all those painful “why” questions of the past can make a huge difference in finding a new self identity and finding one’s way forward in the future.

Finding my autism diagnosis was the most healing thing that could have happened.
Knowing autism was behind so many events of the past, painful struggles, embarrassing incidents, Social mishaps, missteps, mistaken ideas, bad decisions…( all the things that were blamed on my stupidity, my willfulness, my inept and thoughtless mind, my deliberate cruelty, my uncaring replies and defensive demeanor and so much more) were suddenly explained by that one word. Autism!

Autism explained my growing up family’s unhealthy behavior patterns, my missed diagnosis explained my own behavior, knowing about my autism suddenly showed me that everything I ever failed at was not actually “all my fault” as I had been blamed and trained to believe all my life. Autism was hidden deep within our family, with my mother, myself and maybe a couple of siblings as well all being autistic. Nobody had a clue!

Suddenly I could find ways to understand the painful past, to forgive everybody involved in those sad and painful struggles, and to finally find my way to better ways to live, find my way to better understanding of the past, find my way to adjustments I could make for myself to live a better life going forward.
No matter how old we are, knowing our diagnosis can make a world of difference in mental as well as physical health, in helping make life easier and less troublesome in a group home or a nursing home, or any other settings where autism sensitivities and sensory processing struggles come into every day life for the autistic individual as well as those providing care.
I have barely scratched the surface mentioning the multiple ways that diagnosis of autism can be beneficial for older adults. Add to that the lessened burden on mental health workers, social services programs of all sorts and to medical facilities and professionals.
Better choices in life from a position of self understanding gives the individual more autonomy, and the key to better mental and physical health along with a better outlook on life in general.
More studies need to be done with older adults. How do we live, how can we become more independent, how can we do self accommodation, how does knowing our diagnosis help us adjust to make our lives easier and better? How can we locate older adults with “hidden” autism?
As the Baby Boom generation ages there will be more autistic individuals entering care systems, more help needed on so many different facets/pages of ageing.

Diagnosis can be life changing. Diagnosis at even late stages of life can help lessen the coming burden for society as so many undiagnosed autistic individuals suddenly find new ways to live due to the insights that we gain in knowing we are autistic. What a relief.

Random Autistic Thoughts

Things that are on my mind lately: ” aha moments”

Things are kind of quiet and sad at our house. Our good old dog is ageing and it won’t be long before we have to make a painful decision. I am getting up very frequently to let her out at night and sleep is scarce lately. I am very very tired. This will be our last dog. Our cat too is elderly and has a chronic sickness, also not doing well. We have decided it would be unfair to bring a new animal into our lives at our old age and risk leaving an unwanted pet behind if we might pass on before it does. Risks of falls and all the chores of caretaking another animal might be too much as we continue to age. Animals have always been a very big part of my life, so my mind is working on this sad transition even as I expect it is coming soon.

So these circumstances got me thinking about my own ageing process. I am 70. Women in my autistic mother’s family tend to get dementia by age 80, although their bodies have gone on much longer. I feel as if my time is running out and there is a certain sense of urgency to almost everything I write or post these days.

Random thought two days ago. I am still sorting the past and gaining “aha” moments of insight, still putting past upsets, pains and struggles, humiliations, failures, etc to rest.
My mental filing system is working well and after maybe a couple of repeats even the worst memories agree to go to the “finished business” file where I send them and don’t seem to appear.

But with those issues settled, my brain keeps bringing new experiences from the past up for examination. I am rarely truly troubled by these memories as I have alread re lived and painfully examined them over time all these years, and can readily assign them to the files as soon as I recognize they too are “finished business”.

It crossed my mind that I have known about my autism for about 6 years, had diagnosis 2 1/2 years ago in Sept of 2022. I suddenly realized that I will probably be sifting, examining and sorting the past for the rest of my life.

I have loads of difficult memories in the memory bank to work through.
I wonder if I had obtained diagnosis earlier , would this still be the case?
I am willing to do the emotional homework, it is still interesting to understand those old traumas through the new lens of my autism.

I am randomly struck again by how truly impaired my sensory processing struggles and my neurology are. I have been so interested to follow random studies and look for blogs, books, articles on pages about autism, and to follow groups online which support older autistic adults and those of us who are just learning about autism and suspecting we may be autistic .

I made a comment in one forum about some books and links that had been helpful to me, and immediately after my comment, another participant listed many many websites and youtube, twitter, and other very recent media which all involve video and visual presentations.
I realized that I have missed out on many, many sources of input because I simply can not process video content (movies, videos, moving pictures or images of any sort or real life interactions/lectures, podcasts, etc) in “real time”. I was stunned with a huge feeling of loss for my inability to participate in those things.
I have long ago accepted my limitations, so the feeling did not last long, but the infrequent self insight is always an unpleasant surprise and involves for that short time a painful feeling of loss. I know everybody experiences these feelings off and on. It just tends to be something of a surprise. Like other “aha” moments it is a sudden unexpected insight sneaking up on me.

Like the disturbing memories I must file in my “finished business” mental file, and like the sudden insight into how impaired I actually am in one way or another, I suspect that I will also have other “aha” moments for the rest of my life.
I welcome most of those insights.

I have 68 years of not knowing about my autism to sort and understand. I have far less time on earth than that to continue to work to sort it all out. I truly consider myself a “work in progress” even at this late stage of life.

ageing with autism

the getting older side of being autistic

My father used to quip about getting older “it beats the alternative”. Yes indeed, that is true.
Day to day struggles as we age make life harder for all of us.

Autistic people who are already struggling with life and how to get through it successfully may have more difficulty than whatever is “typical”. Nobody escapes it, everybody gets older unless they have achieved the alternative (death).

Health issues and simply living longer are extra difficult when autism is in the mix.
We are often less aware we are having physical problems due to autistic proprioception/ interoception difficulties.
Some of us simply don’t notice that “something is wrong” until it is discovered by somebody else and pointed out.
Some of us are afraid of going to the doctor, the clinic, the emergency room, some of us need a lot of support to do self care such as taking regular meds, getting regular checkups, “tune ups” and follow ups .
Many autistic people have hard times sticking to special diets, shopping for special foods or aids to help us be safer, being aware of safety, keeping ourselves and our surroundings clean and healthy, etc etc etc.

I am aware that those who have “normal” neurology may struggle with these things too, but I also wonder how many elderly with those listed problems might also be undiagnosed autistic?

We may be more prone to falls, to have more health issues, to get less care if studies of the past are correct. Overall, many autistic adults do not live to become old. Average age at death for “normal” adults is 70, average age at death for autistic individuals is 54 .

I guess I don’t have to emphasize self care and attention to safety as we age. We know we will all have more struggles as we get older.
Why not consider what things we can do at present to prepare for better self care as life gets harder.

Put safety precautions and self care at the top of the “TO DO” list today.

Autism bridges

building a bridge for better communication

One of autism’s primary struggles is with communication. Because of various struggles, visual, audio, and other processing weaknesses, we often need help to make connections in things we are being told, taught, participating in, observing or planning. Communication struggles generally don’t allow us to “get the idea” and then fill in the details. We need the details in order to understand the idea, or the “big picture”. This may not be true for all autistic folks but it surely is true for many of us! Neurotypical individuals have conversations using leaps of understanding, intended inferences, references and nuanced speech which often leave people like me with low percentile hearing and visual process functioning far behind. I simply “don’t get” hints, allusions, or vague references to metaphors, comparisons for contrast in sarcastic quips, etc.

I was talking with our daughter in a stressful situation a couple of weeks ago and I had to ask for her to clarify something she said. I often interrupt if I don’t understand, and some people find this extremely annoying, but daughter and I usually communicate very well and she is patient with me.

When I asked her about the context of her last comment, she said “OH, I forgot to build a bridge for you”. The meaning was clear, she had been intentionally making connections for me to follow in our conversation. The idea delighted me and moved me deeply. And I loved the easy description of the verbal practice she was using.

The comment endeared her even more to me. (and she is beloved!)

Knowing and understanding my communication weaknesses , she deliberately builds connections verbally so that my mind can follow her intent in communication.

How wonderful if others would do this too. I never recognized how she had been doing this intentionally, and I was struck forcefully with deep gratitude for the extra effort she has been taking since she learned of my autism to make communication easier for us together.

If you have an autistic loved one, perhaps give consideration to building communication bridges to help fill those gaps where we simply can not travel without the help of extra explanation of connections in thoughts, ideas, and intentions.

Autistic Masking

what about masking? What is it?

Is masking good? Is it bad? How do we discover who we are underneath, when we have been taught all our lives to hide behind masking behavior.

Masking is a hot topic on autism discussion forms these days. From early age we are trained that certain behaviors are acceptable, and certain behaviors are not. From early on we learn to be polite, say please and thank you, learn to bathe, to clean our homes and do laundry, become toilet trained, to behave as society expects us to in order to fit in and allow ourselves to progress in society. This is true for all of us, autistic or not.

For those of us with autism, we might also be forced to hide our physical stims, force ourselves to make eye contact, have social interactions, do many things that are exceptionally difficult for us in order to hide our autism and make is “seem like” everybody else. But it doesn’t work!

Recent studies have shown that no matter how much training we have had, our autistic characteristics are discerned on an instinctual level by neurotypical individuals.
Our body motion, gait, facial expressions, voice quality, use of vocabulary, and other things natural to autism are picked up by non autistic individuals within moments. There is no point to “faking it” we give ourselves away as ‘different’ every time no matter how hard we try to hide it.

Learning social structure/ rules for polite public behavior/ simple manners and basic hygiene are parts of growing up and all children are expected to know these things. Many children may understand these rules without being taught, except for a few reminders when they get carried away with youthful enthusiasm or have limited coping skills. Autistic individuals may need to have detailed explanations of these things and may need help understanding how to perform as expected. This is not masking! This is learning how to get along in society using cultural rules of those around us.

Masking is when we force ourselves to role play things that are not natural to us. To force ourselves to be social when we would rather be home watching tv, to force ourselves to wear makeup and clothing, wear certain styles of hair or participate in things we hate because we don’t want to be thought of as “different” “odd” “quirky” “creepy”. We mask when we hide our interests, when we try to please others using behavior that is false to us or not of our nature because it is expected of us. Masking is giving up a beloved hobby or activity because others feel uncomfortable or think our interest is childish or inappropriate. Masking is pretending to enjoy opera when you would rather read a book or go to the library. If we are doing things solely to “fit in” or gain approval, and if we are doing it to the point that we feel sick with anxiety or distress, are having health issues, breakdowns, meltdowns, or panic attacks, we are masking.

How do we drop the mask and become true to our real, inner selves?
Think of the things you hate doing the most. Think of the things that are distressing, stressful, anxiety inducing, or actually painful which you do for the approval of others.

If we select the worst struggles we have in our lives and figure out a different way to do those things or find things to do instead, we are dropping our masks and becoming true to our inner selves.

I was not true to myself for the first 30 years of my life and I ended up with a suicide attempt. Therapy after that helped me find my real self.

I learned that I did not have to please others if it meant pain or emotional distress, putting myself in danger or participating in self harming behavior simply because I was trying to please others.

I began to dress simply instead of spending hours doing makeup, hair, preparing wardrobe, using hours of exercise and diet each day to maintain the standard my then husband expected of me.

I began to avoid the weekly dinners out at a new restaurant every time and instead had cookouts at home or simple picnics in natural settings.

I began to opt out of going to every football, baseball, basketball and hockey game and doing ‘sports’ every day of the week.

I began to listen to music I liked even though my partner did not.
I chose to do things on my own, much to the anger of my then husband.

Eventually I chose to avoid the company of many others determined to keep my behavior and interests within boundaries that they chose for me.
I found others of similar interests, beliefs, and behaviors instead. This happened over a lifetime of making choices over individual struggles regarding activities that caused emotional or physical pain.

My life evolved over time, each time I discovered something that was very very hard for me or something that actually hurt or caused me to feel sick, I figured out ways to exchange that behavior for something I actually liked instead of forcing myself to a mold of other’s expectations. I could be myself! I could do things my way! What a freeing concept!

Little by little the true person inside began to show herself.

Those who knew me in my 20’s at the time of my first marriage, my first jobs, my first few attempts at being social, participating in group activities, sports, and shopping activities, etc, would not recognize me today.

Some of the changes may be part of natural evolution of ageing, but a lot of the changes in my life were a deliberate effort to let go of others’ expectations that I must live a certain way, look a certain way, have certain interests, certain political beliefs, certain social circles.

Take the time to think about all the things you might do in a day which cause discomfort, distress, dismay, or actual physical or emotional pain.

Do you absolutely have to “do life” that way, or can you make changes in individual struggles over time to give yourself relief and to find peace?