Autism vs Neurotypical

“us vs them ” thinking


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

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

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

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

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

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

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

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

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

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

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

Autism Sensory

Seeking or Avoidant? Or both???

As autism is becoming better understood, we are beginning to make sense of autistic behavior and its relation to sensory processing.

Because autism can be described as uneven development of one’s neurological system, we are finding ways to sort and define these neurological “styles” of sensory processing.

Since each of us has differently developed neurology, we will have different struggles.

Roughly, these struggles and resulting behavior fall into two categories.
For some of us, our senses may get easily overloaded or overwhelmed. We may find that lights are too bright or that flickering patterns cause distress. We may find that things we hear become painful or distressing, annoying or anger producing when we can’t stop them or control them as they happen.

We may find the way things feel against our skin becomes distressing, too light of touch, too prickly, too stimulating in situations where we are in a breeze, cold or hot water, using lotions, being scrubbed with brushes or rough cloths, etc. We may hate the way something feels in our mouth, be overwhelmed by tastes, smells, or other sensory input. When we are overwhelmed by our sensory input, we become avoidant… try to avoid these experiences at all costs and when we can not escape to our own comfort level, we may flee, shut down, or melt down.

Those of us who need to escape our sensory input frequently and who do so in many ways, from refusing to go places, refusing to try new things, refusing to wear certain clothing or eat certain foods, hiding our eyes , covering our ears, turning our backs or running away…are called sensory avoidant. We must avoid sensory overwhelm and struggle to maintain performance of daily living while coping with and trying to avoid “too much input”.

The other broad category of sensory struggles falls in the opposite direction. Those of us who are sensory seeking require sensory stimulation and more sensory “input” than what our senses process in daily living.
We may enjoy jumping, in all forms, bumping into walls or furniture or other people, running, swimming, spinning, pounding, rolling, and any other physical experience .
We may smell, touch, or taste all sorts of things, in fact it is almost impossible to resist the impulse in many cases, even when doing so may be considered highly inappropriate.
Sensory seekers are more likely to hit or bite themselves, to deliberately seek sensations of hot or cold, bright and flickering lights, seek sounds of all sorts frequently at volume. Sensory seekers may want to be held or stroked, cuddled, may like deep tissue massage, the use of sensory tools such as mitts and brushes that provide different “feels” upon the skin, and may enjoy tight clothing or weighted vests or backpacks.

In some individuals, processing may be mixed, with certain experiences being overwhelming and others being sought.
Each of us is very different, each of our sensory systems are unique, so one must work to sort which sensory forms of input are appropriate or must be changed or carefully adjusted to prevent either overwhelm or to help satisfy the need for more stimulation .

Once we recognize the way we process input from all of our senses we can make adjustments to our lives to make every day living less struggle and more satisfying, safer, and easier overall.

Most articles on the internet, and most studies about sensory processing and autism are , of course, aimed at children. Very little information is available about adult sensory processing. Thinking back to your childhood, perhaps you will recognize patterns of behavior that will help you figure out what sensory experiences you try to avoid and what sensory experiences you might seek and enjoy, and wish to experience more frequently.

Are you sensory avoidant, sensory seeking, or do your both avoid and seek sensory input ?


Autistic Communication

It is a two way street!

In other words, it takes two to communicate. Much time is spent teaching autistic children “how to communicate” with allistic/neurotypical others, but not much seems to be said for what allistic/neurotypical individuals can do to understand our communication styles.

Recent studies show that autistic individuals communicate very well between each other for the most part, because our communication styles are more similar to each others’ than the style of allistic/neurotypical individuals.

As an autistic person I am very direct. I am uncomfortable with social “chit chat” and don’t get subtle nuances. I don’t get “hints” or things like sudden complete silence, body language, or sudden change of topics as hints that what I am saying is making the other uncomfortable somehow.

I don’t get subtle signs intended to suggest things that are not directly stated and can not “read between the lines”.

I simply can’t take in any meaning of things that are hidden “between the lines” and meant for me to understand without your having to say it clearly , explicitly, and with as much detail as possible.

I am honest. I tell it like it is. An allistic or neurotypical individual may tell a “social lie” or fabricate excuses or carefully-carefully tiptoe around an issue to be sensitive to the other individuals emotions/ feelings. If you do that with me, I am likely to entirely miss your message!



I am usually unaware that what I say may or may not cause “hurt feelings”. I say directly what I think. Even though I have been warned to “think before you speak” and “put yourself in the other person’s place” I find this very difficult to do. I would not intentionally trample feelings, try to make another feel bad, or deliberately insult another, but often this has been the result of conversation “in person” or in written correspondence.

Hints for allistic/neurotypical folks when communicating with those who are autistic.:
Get to the point without a lot of light chit chat. Be direct, be honest and expect directness and honesty from your conversation partner. Be as specific and literal as possible, provide plenty of details for complete understanding.

We may not “fill in the blanks” easily or understand your intent unless you fully explain it. Don’t assume we are grasping subtle nuances or hints.
Don’t assume we meant to be insulting or hurtful in any comments we make in conversations. It is very difficult to understand things from another person’s perspectives and we may need explanations in detail to complete the thought in any suggestion or allusion an allistic/neurotypical person makes.





Autism Relationships

Parallel Play

I read an article recently that talked about “parallel play” as it is used by adult autistics.

Parallel play is when one is in the company of others and each engages in an activity without much interaction between individuals. Each person may be in the presence of others but is solitary in the nature of what ever activity they are doing. Small children may use parallel play on the playground, for example, one on a swing, one on the climbing or bouncing structures, all seeing each other enjoy activities but not actually interacting. For most kids, that part of play is mostly replaced by interactive, organized games or pretend scenarios, tag, playing hospital or house for example, as they grow older.

In our household we 2 are content to each read a book in the same room, or even in different rooms, or to use the computer, do crafts, or other things individually, but knowing the other is there seems to add comfort or to be companionable without the need to interact.

We may go for most of the day without speaking more than a few sentences to each other. We rarely discuss emotions (almost never!) nor do we often play board games or card games or participate in similar activities together.

Usually even meal prep and eating is solitary. Once a week we may cooperate on a communal meal where we do at least part of the preparation together and we sit down and eat at the same table at the same time.

When we had our family, we always ate meals together but since the young ones have flown the nest, our health needs dictate specific and mostly different diets. It is too much work to figure out things we both can have and coordinate meals so that our metabolic schedules and caloric needs are addressed, etc.



https://www.adultandgeriatricautism.com/post/autism-and-relationships-parallel-play-in-adulthood#:~:text=Within%20the%20autism%20spectrum%2C%20we,ideas%2C%20opinions%2C%20or%20emotions.

There is growing recognition that autistic individuals are quite capable of having relationships but that the communication and interactive structure of such relationships may differ vastly from “the norm”.

Do you practice friendship and closer relationships using “parallel play” ?

I recognized that the successful interactions I reported in one of my recent blog and the friendships I found then were based on parallel play and information sharing.

More research needs to be done to learn the best modes of relating to autistic individuals. Instead of “teaching” us how to interact as neurotypical, and expecting our relationships to be based on neurotypical behaviors and “social norms” , there needs to be better understanding of what forms of relating and interacting are most comfortable and useful to those of us who are autistic.

Communication and relationships are best for relationships when not completely one sided.

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 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.