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Hidden Autism?

find clues here: YOU MIGHT BE AUTISTIC IF :

Interacting with others is usually difficult, uncomfortable, upsetting, or not satisfactory in other ways. ( diagnostic criteria 1 -social struggles)

Signs include being estranged from family, lack of friends, multiple marriages or relationships that end in distress, constant fighting or misunderstandings with others including: trouble with people in school, church, relatives, workplaces, encounters on the street or in public places, difficulty with situations such as doctors offices, emergency treatment/hospital/clinical settings, difficulty in encounters with those who work with the public (police, teachers, store clerks, restaurant servers,or workers who come to your home ( such as plumbers, lawn care, house cleaners, etc etc etc).

You may have been bullied, abused,/ and-or neglected as a child, you may still be bullied or in an abusive relationship.

You may prefer to keep away from others because your “people” experiences have not been so good. Sound familiar? Keep reading.

YOU MIGHT BE AUTISTIC IF: You struggle with communication.( diagnostic criteria 2)
You might find it difficult to express yourself either spoken words or in writing, using ASL, texting, or on the phone.

You might have troubles with speech , including stuttering or stammering, freezing up when you think about speaking or are suddenly called on to speak.

You may not recognize your own emotions until they overwhelm you and you end up “falling apart,”
“blowing up” “freezing up” or “breaking down”, or “having rages” .

You might be dyslexic, hyperlexic, or be unusually talkative or withdrawn. You might prefer to read and write to communicate.

You might have difficulty using your facial features and body language, or others have told you that you have strange body language or gestures and expressions.

You may find it difficult to understand the facial expressions and body language of others.
You might have frequent misunderstandings and have trouble following directions.

You might have been accused of being over friendly or being cold, or of behaving inappropriately.
You may not recognize “personal space” of others.

Social chit chat is frustrating, boring, annoying or causes anxiety.

Having long two- sided conversations with exchange of information or ideas, or sharing of emotions is mostly unknown or you may never have experienced this.

You tend to avoid interacting with others because of these difficulties.

YOU MIGHT BE AUTISTIC IF : you have rigid thinking and or repetitive behaviors ( diagnostic criteria 3)

You might have a regular routine around many parts of your life, and you hate to have those routines disrupted or suddenly change.

You hate surprises (good or bad)

You expect certain behavior from others and are surprised, disappointed, angry, or dismayed if they do not behave the way you expect.

You have strong beliefs about right and wrong, what is good and what is bad, and you rarely change those beliefs.

You may have intense interests in details surrounding a specific subject or subjects. It is not unusual for these interests to change over a period of time, but whatever those interests are, they will be very specific and demanding detail and will be absorbing and of almost driven/ obsessive proportions.

You have certain rituals or processes you must do in order to accomplish certain tasks. Being asked to change these suddenly makes you uncomfortable, upset, angry, or distressed and worried.
As an example, I brush my teeth after I eat anything. since I snack constantly, I brush my teeth a lot when I am home. When we travel, I am often unable to brush after meals or snacks and I find that distressing. Other examples would be the order in which you do any task, the tools you might use or need to work or to perform the task, time of day you must do things, etc. If your rituals or processes are changed or interrupted it is difficult to proceed without upset.

You may tend to isolate yourself or resist other activities or interactions if they interfere with the structure of your rituals and routines, or if you are not given time to prepare for them properly.
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If you relate to these things, and more importantly relate to 2 or more behaviors from any of these 3 sections, you may be autistic.
The sections I just described are sometimes called the diagnostic TRIAD of autism… having behaviors from all 3 sections are points used to diagnose autism.
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I add my own criteria here: ( and many diagnostic persons also take note)
YOU MIGHT BE AUTISTIC IF :
You have sensory struggles. This can include not only trouble with any or all of the “usual” 5 senses but also difficulties in interoception and proprioception. These have to do with regulating your emotions and knowing where your body is in relations to the rest of the world.
You may struggle with perception of light, taste, touch/feel, smells, sounds, knowing and expressing your emotions, and being coordinated/clumsy, having trouble while in motion or watching others in motion, listening and understanding, fears related to going too fast, fear of falling, fear of being touched, sudden noises, being overwhelmed by a smell, hating certain foods due to their taste or texture, trouble wearing clothing because of seams, texture of fabrics, sticky labels, etc. The range of sensory struggles is so big I can not include enough examples. But if you think about how you use your senses and what your most difficult struggles are, you may find that many relate to unusual sensory processing.

You might have a personal history of job loss, unemployment, being bullied, abused, “set up”, scammed, used or victimized. You may have a personal history that includes experience with substance abuse, involvement with law enforcement/ justice system, multiple diagnoses of genetic and or neurological disorders, autoimmune disorders, depression, anxiety, or other mental and/ or physical illness, homelessness, poverty, and may have recieved therapy or treatment which was not successful or resulted in non typical ways of responding to treatments for named diagnoses.
These things are documented to be significantly higher in the autistic population.

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One of the difficult things about diagnosis of autism is that it does not have just one way of showing itself, because it is due to differences in neurology, each person will be different, and each of us will have different life experiences, all of which help to hide our struggles and make them difficult to define. The things listed here are necessarily general descriptions and it is up to us to sort out which details of our own lives apply to the descriptions of the way we struggle. Although autism is physically uneven development of our neurology, diagnosis depends on general behavioral guidelines and autism’s effects on our lives are mostly behavioral.

I continue to address older adults who think they may be autistic and to encourage them to consider diagnosis, search out information, to ask for help.
You are not alone.
Knowing my diagnosis has made all the difference to me even at the end stages of my long and struggling life. Finally I can make sense of it all. What a relief!





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 aftermath

The “do it yourself” diagnosis ( PS its the same for every other diagnosis too!)

For those of us who are middle aged and well beyond into our “senior” years, autism diagnosis has been hard fought for the most part, with sometimes years of misdiagnosis and years of struggles without the understanding that knowing of our autism brings.

For most of us, even if we find diagnosis, we are left without supports of helpful therapies, accommodations, explanations, guidance and insights .

So many of us are damaged from years of struggles and misunderstandings.

So many of us are seeing for the first time a clear connection to our painful pasts and our changing futures. What now?

Autism has been included in the DSM guide for diagnosis because it is recognized in individuals from only a behavioral clues, since there are not yet biological markers that can be used consistently for reliable diagnosis. ( if we all had green fingernails, and only autistics had those, for example).

Instead, although it is finally being understood that autism is a sign of uneven neurological development, diagnosis has been strictly through seeking unusual, or uncommon behaviors.

I do see this is changing, diagnosing professionals are now also looking for neurological differences, sensory processing struggles, differences in motor skills and motor struggles, physical signs that have a basis in our neurology as individuals.

Changes are slow coming, especially for those in our “golden years” whose time left on earth is naturally biologically limited.

So today we are diagnosed but don’t know what to do about it. Many of us need help to see how our own version of neurological differences affect us and to sort out what things we can do for ourselves to make life better.

Many people begin by seeking “autism therapy” or looking for professionals who must understand their autism in order to give aid of insight, therapy, services, etc.
For the most part there are no “autism specialists” to provide these services and therapies, help or support.

I participate in several groups for older autistic adults online as group member, moderator or administrator.
One frequent question, often from desperately confused and frustrated individuals with recent diagnosis is “where is help>where are supports for me>who is going to do something about this??” ” Nobody is helping me!!!!!! ”

I want to explain that in today’s society our late autism diagnosis is not something other people can fix for you.

Our diagnosis means lots of personal hard work to “make it better” (this is a quote from a recent interaction on line with one individual).

Autism is not a quick fix. In fact for the most part we can’t fix anything about our autism.
It is the neurology we were born with.
There are no pills, no diets, no surgeries, no training that can completely change us to be “normal” or not to be autistic. We gain insights and self understanding when we are diagnosed and are better able to then adjust our lives to help ourselves do better with the neurology we have had since birth.

Instead we need to do our own homework, including seeking help to gain insights into ourselves and our histories, our needs and our personal situations to build new and better lives for ourselves. Nobody else can do this for us.

We must look beyond our autism when we look for help. There is no “autism therapy” for recently diagnosed adults, but there are many services already in place which we can call on.

We can seek out social workers, insurance “navigators”, investment counselors, housekeepers, physicians, psychologists, coaches and employment. We must ask for help finding counseling or therapy and or medication for our anxiety, ptsd, trauma, depression, or other psychological and emotional struggles. There is no “fix it” therapy or “autism counseling” under one roof. Each problem must be addressed separately, since each of us is so different from the other. (just like the rest of life!)

We can find therapy for physical struggles, problems with day to day living requiring help such as housekeeping, help in bathing , supports and adjustments in the home, or if we live in care, adjustments to personal and common spaces which help make our lives easier.

The workers we choose to help us do not necessarily have to know a thing about autism to be helpful in finding new ways of doing things, physical help, and new communication tools, and/or help learning new behavior patterns which can help us live better lives.

We can check out community resources for housing, food, medical care, physical or intellectual disabilities, and so much more without ever bringing up our autism or expecting others to know about autism, or what it means to us.

In truth we( autistic persons) are a very small part of the general population and each of us has needs that are very different. In so many cases there are already places to go, services to seek, help with our needs already in place. Not as “autism therapy, autism help, autism support” but more narrowly , things that can and do address our individual struggles.

The part that is the hardest of all is figuring out our worst struggles and figuring out first of all what we can do to make each problem manageable.

There will always be more resources available to us where there are higher populations. In areas with lower or more sparse populations, there may be the need to relocate, to travel long distances, or to find very creative ways to help yourself live a better life. You might have to make a decision to live in places where there are more services or be extra creative about finding help online.

Nobody is going to come to your door, call you on the phone, or offer assistance just because you are autistic. (If they do, be very wary, it is probably a scam!)

It still falls upon the individuals to be responsible for themselves to find the things they need in life .
There are lots of actual medical diagnoses in life that require similar action from the individual.
Only I, as a diabetic, can make sure I take my meds, watch my diet, exercise properly, wear proper clothing/special shoes or use special furniture, or seek out special aids to make my management of my diabetes easier and help myself be healthier.

When it comes right down to it, we are all stuck in “do it yourself” positions in our lives.

Nobody cares more about our outcomes, our struggles, or the ways we can accept our limitations, work toward better health and an easier life, adjust things in our homes and daily routines.
We alone are responsible for ourselves, to make the best and healthiest decisions we can and to carry out our lives in better and healthier ways.

Nobody has more invested in the outcome.
Nobody has more reason to work as hard on my behalf (or yours) nobody will provide all the answers.

We must seek our own help, we must be responsible for our self care, we must make our own decisions about our lives and must make our own choices.
Nobody is going to rescue us because we are autistic, any more than they will do so for any other cause.

Communities of autistic folks online are a great resource for ideas and input about where to start, how to figure out your needs, how to sort and improve your life. But it will still be up to each individual to put those ideas into action.

Much of this might be self evident to many individuals, but it seems that for autistic folks, sometimes we need detailed explanations. I hope you are finding what you 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.

My autism is a disability

There, I have said it.

I know it is a fashion to say autism is simply another (alternative neurology provided by nature)
and that it is not unnatural or that autism is a gift with super powers. I interacted this morning with other members of a forum and responded to a new member looking to learn better skills at social interactions. I tried for almost all my life to “fit in” and to interact successfully with others. Most of my efforts were in vain. No matter how hard I tried, I simply never got along with others, misunderstanding them, they misunderstanding me, etc.
Once I got my autism diagnosis and read the test results, along with some thinking, it became evident why I struggled. Here is the response I wrote. I thought I would share and might be useful to others beginning to sort their struggles and trying to find new ways to self accommodate and make lives easier around their autism troubles.

  • I thought I needed to learn manners, gain insights into others’ motives and etc,I tried so hard for years and constantly rejected. After learning my sensory processing was sooo slow and bad (25th percentile visual processing and 35th percentile audio processing)I finally realized it and had to accept the fact that I just was not(am not) equipped to do things with others “in real time”. Ever, no matter how hard I try.

    My autism truly is a disability to socialization.
    My processing simply does not work fast enough to have “real time” interactions in person, in chat, on the phone… I only pick up part of the cues because I simply can’t process things fast enough to have actual understanding of anything I see or hear in “real time”.

    Ever.

    I Can’t rely on my vision and hearing to give me information, I am constantly misled through misinterpretation, mistaken ideas, mistaken thoughts and judgements surrounding what I see or hear.

    I truly can’t believe my eyes, I truly can’t believe what I think I hear.
    That truly is a disability!

    I have the same struggles with videos, movies, lectures, concerts, presentations… anything in motion and in “real time”.That leaves me with mistaken perceptions about almost everything.
    No wonder I have been overwhelmed and confused most of my life.

    My autism is not a gift but a true handicap. I can’t pretend to be normal.I simply can’t interact in “normal” social ways. I am not equipped to handle it.

    I am fortunate to be able to read and write!
    I think I developed those abilities like a muscle, since I relied on them for so much of my life.

    I read to have true understanding of my world and I write to communicate at my best.

    That seems to be my only sensory processing function that works “normally”.

    My neurological testing gave me “gifted” scores for reading and writing.
    ( Most of my other scores were miserable) It is because I exercised that part of my abilities and relied on them the most.
    These forums “are” my social life.

    I finally have had to accept that no matter how hard I try, I simply will never be able to do ‘social things” in real life or real time (video/streaming etc too).

    I have begun to use the internet and forums as a way to interact satisfactorily with others. My primary interest to begin with is learning and reading factual autism content.
    Everything is now about autism since my diagnosis.
    What a relief to finally understand my long and miserable life, and how wonderful to learn everything I failed at all those years was not actually “all my fault”.

    How wonderful to find I am not alone but that I have many autistic brothers and sisters “out there”!!!

    I belong to several autism forums and I write a blog about being late diagnosed with autism, and adjusting to my new understanding of self.

    I love information sharing.
    I love knowing there are others like me who truly do understand and who accept me as I am.
    The internet is an absolute gift to people like me.
    Hope you find answers. Best wishes.

Autism and predators

DON”T BE A VICTIM

Everybody wants your money
or your time, your services, your free labor, your affection,
use of your home, car, OK you get it.
How do you keep yourself safe in the sea of sharks that our world has become?

Because it is difficult for many autistic individuals to figure out other people’s motives, and because so many of us are genuine, truthful, direct and trusting, anxious to make friends and to interact with others, it is easy for us to become targets for others’ gain.

Many people in the world are all too ready to take advantage of us.

Autism forums are full of reports of those of us who have become victims perhaps many times, without our realizing, at first, or maybe only very much later, what had happened.

I had my share of experiences with misplaced trust and too generous of a nature. I wanted desperately to interact with others, to be thought of as “good”, to do anything I could for the other person to “prove” how good, kind, caring and worthy of attention/affection I was.

In school I gave others money or my lunch, I did other peoples’ homework, I did research papers for my first(now ex) husband, took his tests, worked to pay his tuition and our rent while he went to school and to drinking/drug parties after and used my car both before and after we were married. I forgave him for ‘forgetting” to pick me up after a midnight shift and having to walk home over and over and over, and over.

I would have done anything to keep him from getting angry, or in any way being even the least bit unhappy with me.


I was used for sex, I was used for a place to stay, I was used as an unsuspecting driver of somebody who perpetrated breaking and entry while I waited patiently in my car for them to get back from “having to see somebody about a job”. I gave a car to somebody who “needed it to take care of their family”.
I gave money to people who were hungry, allowed them to stay at my apartment, bought them clothing, food, did their laundry, cooked for them, had sex with them, took care of their pets and their children, unknowingly gave information about friends on vacation and etc which led to those people being robbed. I was used, abused, and eagerly participated in this because I so badly wanted to be cared about/ loved, cherished by anybody.. anybody who would have me, at any cost to myself. I did it over and over for much of my life. Have you done this too?

I was trained to be a people pleasing victim. I was trained in very early childhood to never refuse to do anything I was told to do, to “respect my elders” and to worry if somebody told me I made them angry, hurt, sad, or “made them do that to me” .

I had to get therapy to learn that other people’s feelings were not my responsibility!
I learned that I did not make people angry, they chose to become angry over something I did or did not do.
I did not make other people sad, they chose to become sad over something I said or did.
I did not hurt people’s feelings, they chose to become offended at what I said or did.
What a change of mindset to learn I could make choices too!
I could choose not to drive somebody somewhere for any reason, I could choose not to have sex with somebody if I didn’t feel like it. ( and I never even considered how I felt about any of this, I was only interested in how the other person felt, and to keep them from getting angry.

I could choose not to cook a meal, clean the house, work 2 jobs, do other people’s work … I never knew I had that option, stupid as it sounds now all these years later. I had to have an outsider explain it to me, I simply could not see I had options, I could not think of other ways to handle any life situation regarding other people than the one that I had been trained to (abuse and trauma played their parts in that childhood training too)

My autistic rigidity kept me to the ways I had been trained to respond to others and I never questioned my automatic responses to others’ demands. I needed an outsider to point out the mistaken ideas I had and the alternatives I could choose.
I learned how to recognize when I was being manipulated and intimidated, and I had to learn how to recognize my own buried emotions. I had no idea of when I was angry, because I suppressed and denied it for so long, instead I was sad, impossibly sad, almost all of the time. I had to learn how to get angry, how to figure out what I wanted instead of wondering only what anybody else wanted of me.

When I learned to say NO I learned a very good defense mechanism to be able to avoid being used and abused, victimized. It is never too late to learn how to say no. It is a skill anybody can learn and practice, and you get better at it as you go along!


I also learned the skill of asking a few questions when presented with “opportunities” pleas for funds or assistance, pleas to answer somebody else’s needs of any sort, pressure to give, give, give, serve , serve, serve. Usually these requests come with a “honeymoon” stage.

Online or in person, users will smother you with attention, compliments, seeming words or acts of loving kindness and caring.
Internet scammers will approach you as a potential romantic partner. You are so fascinating, so good looking, so funny, wise, thoughtful, generous!!! They can not wait to interact with you, get angry when you don’t respond to them, want to know all about you.

Then they begin to want things. Money for paying taxes, for a missed payment for rent, for a medical procedure, for tuition for school, for tickets to travel from their home to come see you. Sometimes they do show up, but often there is a sudden emergency and the money is gone, could you send more?

There are plenty of versions of this in real life, with the person doing the scamming “working” several other individuals at the same time , without each victim knowing.
Such a scammer will tell you “its not your business” or” I have to work away from home,” they will not be willing to spend time with your friends or family, will never introduce you to their friends and family, will not want to go places or do things outside of your home.
Don’t be so anxious to be loved that you negate your self worth.
If the individual truly finds you valuable they will not ask these things of you, spend time trying to shame and upset you, threaten to remove their love or attention, etc.
Do your homework. Look into their claimed identity, look into their past, look into their circumstances.
If they do not share information about themselves willingly, and information that you can verify, don’t be fooled. You are worthy of real love and caring, you are worthy of a real relationship, you are worthy of being a true participant in other’s lives, not just a “support system” or a wayside stop.

Not only are individuals out to use you and profit through you, but there are so many online scams to take your money. Among them will be false cures and therapies, false programs with no scientific basis, no actually proven diets, supplements, tools such as lenses, physical “touch” adjustments, various techniques for “re patterning” the brain to make it work better.
Take a look at the very long list of “pseudoscience” listed under Wiki or other pages. Know as much as you can about anything another person proposes you invest in!! not only does this apply to Autism but also seek out scams involving banking, trading, finances, lost or found property, family members introuble, and so much more.

Regularly look for information about the most current scams being played on others… these folks are clever and some of the scams are very difficult to spot.

Research any new autism related or other medicine. Medical scams apply to all fields , wherever there are people desperate for relief be it through a supplement, treatment, claim, cure, or “therapy”, etc .
Search thoroughly and understand if there is actual science behind these claims.
Beware of claims without links to backup studies which have been duplicated repeatedly and which have been published and peer reviewed. “correlation is not the same as causation”. Is a good idea to keep in mind. “who benefits”? is another.

I had a doozy of a day yesterday on a page I admin/ moderate. In the same 12 hour period, there were questions about diet/supplements/ and the possible ties to autism, (there are none verified through science), posts about therapies using claims of breakthrough in stimulation of certain parts of the body to evoke cures of emotional dysregulation,( again, there is no scientific evidence that any of these works) and posts about books , a page set up to look like a blog, and selling books and programs meant as “therapy” using miracle claims from people who underwent the “therapy”/treatment/bought the books.

I call all this stuff “woo woo” and you should too.

Magical cures readily available, new radical discoveries revealed, do it at home and be cured…. does it even raise a question in your mind? It really ought to.

Don’t let predators feast on your hopes and your desires. Reason it out, think it out, do your homework. Don’t become a victim because you want so badly to believe what they are telling you.
I am here to ask you to be skeptical, do your homework on any new theory or cure presented for profit, thoroughly to see if it is backed up by actual science and tests performed and results published and peer reviewed. Be especially cautious if the results seem too good to be true. Usually that is the case.
I

Autism Warriors

The choice to make it all a fight

Something is happening that is becoming harder to ignore. I have always been a peaceful person, live and let live, agree to disagree if necessary, you go your way I go mine. I tell people I am a lover, not a fighter. The fight is being brought to my door more frequently lately, or it is being pushed on others. I see more hype and more anger and more frustration, more people being targeted for angry attacks. Maybe I am just getting old, but it all seems so destructive and not helpful.

Kind of vague and non-specific rambling so far, right? Let me try to explain. Instead of conversation about any topic, I am meeting more people in groups I participate in and host who are intent on destroying and shutting down anybody who says something they disagree with.

I am experiencing and hearing more from others who have encountered individuals who specifically go to pages and sites to post angry diatribes about how bad certain expressed ideas are, and “why don’t you do “this and this and this” instead of saying “this” .
You are harming autistics, you are damaging and hurting us, you are not supporting us if you don’t “this and this and this” (naming specific ways the host, the speaker, the selected ‘target’ of the attack is supposed to think, act, believe and to do .
I have left several groups because of this rage and focused furious attacks on members who should be allies. If one does not think exactly as the attacker, one is a pure enemy and must be destroyed. I think this is a great illustration of classic autistic “black and white thinking”
This seems to happen on all ends of the spectrum, from parents of autistic children to old people like me, to young and barely communicating individuals using forums for social purposes.

I know about trolls, those who roam the internet deliberately stirring things up and provoking confrontations for the sake of their own amusement, and sometimes in gangs, joining together and taking turns attacking or observing others do the attacks.

What is different here is that these same attacking individuals are posting about how they go about their ways, and report triumphantly that they had these confrontations with the evil parents of struggling children, the evil old person who uses the wrong words, the evil person who dares express an opinion or suggests the wrong idea or thinks differently than what they “should”. They seem to see themselves as heroes setting the world right and destroying the monsters. Too many role playing video games in their past? Who knows?

In my own mind, I have an idea how the world “should” be too. It does not include attacking or shutting people down, shouting them down, harassing or distressing them or deliberately provoking defensive arguments. Autistic people have been bullied enough in “real life”. Forums and groups need ( for some of us) safe places where we can discuss ideas and support each other in our daily struggles. Life is hard enough without finding ourselves in the midst of angry diatribes and being the focus of hatred because our thoughts are different. We already know we are different every day. We don’t need attackers within our forums as well. I wonder what places on the internet spawn such angry and self justified individuals. I wonder how so many are seemingly cheering each other on as if they were accomplishing a victory or banishing an enemy.

I believe all sides need to be presented so that others can understand what the arguments are about, can see what issues are at stake, and can learn for themselves so that decisions are not made on quick gut emotions but are also clearly thought out and decided on from actual information.
I guess it is just another facet of autistic communication struggles, this direct attack behavior thinking of oneself as a hero, but it is one that I have difficulty finding peace with.
I would rather educate and elucidate, validate and inform than spend time fighting and fleeing while trying to defend ideas and thoughts.

I am learning how to use the “block” or “ignore” button.

I wish I had the inner strength, the ability to think quickly, the emotional resources to try to help these individuals, but I begin to think it is not passionate beliefs or intense devotion to a cause that they are espousing as much as it is some sort of sport, much as when the dog discovers its first henhouse. How exciting!!!
There, I am showing my old age, but I never did pretend to be anything but an old lady with autism… or maybe you prefer I say “autistic old lady”.
I actually use either description of myself and I don’t have to pretend that part.
No answers, life keeps rolling on. Watching with interest.

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.


Misophonia and Autism

When little sounds drive you wild!

Misophonia is a common sensory processing struggle. It happens to individuals outside the autism spectrum too. https://www.webmd.com/mental-health/what-is-misophonia

Recent studies, as quoted above show misophonia is a sensory processing disorder and most likely neurological in nature. No wonder Autistic individuals seem to experience this struggle more frequently.

The drip drip drip of water from the tap into the sink, the mouth breathing or open mouthed chewing of somebody across the room from you, the tapping of a branch on the window, or the clicking or tapping from toes, a constantly barking dog, anything can be the focus of this deeply frustrating processing disorder.
we can become anxious, furious, and even outraged at the percieved intrusiveness of the triggering sound or sound. This is not helpful to having good relationships with others, from co workers, peers in social situations, to members of a family. Misophonia can be very upsetting not only to the sufferer but to those around them who can become the focus of the rage and frustration involved in a triggered event.
There are things that can be done to address misophonia and to help sufferers cope.

One can use “white noise machines”, a safe space where the sufferer can retreat to avoid the input that upsets us, headphones with music or soothing sounds, some attempts have been made to de-sensitize through longer and longer exposures to the upsetting sounds, and using Biofeedback might help in some cases.
Occupational Therapists may be able to help, depending on their specialties.
Misophonia is rare enough in the general public that many Family Doctors have never heard of it.
If you struggle, you may ask for a referral to a neuro psychologist or other specialists. Please don’t hesitate to reach out to find ways to help and to make self accommodations to protect yourself and those you care about from the effects of misophonia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4547634/