Autism diagnosis anniversary

Coming up soon

For me, diagnosis changed my life enough that I remember the date and circumstances around my diagnosis clearly and I celebrate it each year. At the end of this month ( September 2025) I will celebrate my 6th autistic anniversary.

Knowing about my autism has changed my life for the better. Self understanding was something I had missed completely all those years before and it has taken emotional homework to sort and understand so many things from the past.

I am still learning about my own neurology and still trying to find ways to adjust my life to make struggles easier.
It has been hard to accept that I really am impaired in “normal” every day activities by my neurology. I find myself facing grief off and on when I struggle with some aspect of daily living where autism causes misunderstanding or makes it difficult to do something others do with ease. Todays news and strife adds to the emotional pain and like everybody else I feel particularly helpless, vulnerable, afraid of what lies in the future.

I try to remember to do my best self care, not to feed myself on social media’s shock and fright tactics (such things raise viewership and media does not hesitate to feast on horror, fear, distress, etc all over the world to gain customers).

I am trying to keep my life balanced and put myself on a diet of doing things that I can control, things I can do in my own little sphere to make my world better. In order to do this I must accept that I can’t control much, that I am not helping anybody by becoming dysfunctional through distress and anxiety induced by the feeding of my fears through social media/the news/ etc.

I can keep informed with just a few minutes of reading daily, I will no doubt be informed if the world is ending and somebody will tell me what to do (as if we could do much in that scenario).

I have been reading a lot of history over this past summer and have come to recognize that this sort of thing goes on in every generation. There is always a battle of “sides” of understanding… it seems to be human nature. There is always violence, mayhem, killings, sick behavior by individuals, just as there are always others who struggle to do good.
That all seems to be part of human nature.

I can look back in my own life, and I can look into the stars in the night sky and see how insignificant my own personal struggles are in the scheme of the world.

Very few humans are recognized beyond their own lifetimes, the rest of us experience life and all our struggles in different ways and pass on without fanfare in the world scope of things.

Do what matters most to your own life, your own loved ones, your own little place in your group, your community, your personal sphere…. you can safely leave the rest of it to history and world processes that will go on forever.

Thoughts on my own progress/process. It has been almost 10 years since I first began to suspect I might be autistic. It has been since 2017 that I began to try to learn more. I got diagnosis almost 6 years ago and began this blog in 2019. I find I am in a different position now and I have less information to share. Today’s science has uncovered many things and has clues to so much more but it is very slow going. Current trends in politics are very concerning and I am watching with strong interest. People who believe in science and finding and documenting facts are working continually for better understanding and I think funding will continue to be available from those who are financially able and who are concerned. Beyond that it is not within my sphere of control and I must rely on others who have the powers I don’t.

“accept the things you can’t change, change the things you can, and find the wisdom to know the difference” is something I am trying to live by. Learning what we can control and what we can not seems to be a key to mental health as we all struggle with conditions in the world today.
Find ways to give yourself what you need, what your loved ones need, what is good and right for you and yours. The rest is just details.

After Autism Diagnosis

when your diagnosis says “autism”

After the diagnosis process we must adjust to the idea that we have ‘different” neurology which can give us struggles that most adults in the world’s population simply do not have.
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The idea that we were affected all our lives and that we did not know or understand is something that takes a lot of emotional homework and self education as well as eventually calling for self -accommodations. Suddenly seeing everything in our lives, our self understanding, understanding of others, our ideas, thoughts, beliefs over absolutely everything in our lives right up to this minute is stunning. Its an entirely new perspective and so many things look so different once we know our diagnosis.
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Diagnosis is like culture shock, even if we expected it, and this new perspective takes a lot of sorting! Many people report upsets in the days of processing this new view of life both past and present : sudden anger, resentment, grief, relief, “aha” moments of sudden insights where so many “whys” of the past are answered by the word “autism” and the new understanding it brings us. Of course we are shaken to our core!
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Do your best self care right now, you are going through sudden emotional whirlwinds, changing and growing with all the new insights, you will likely begin to make self accommodations as you discover yourself struggling with yet another part of your daily life.
you will need time, need rest and food and drink,to have the emotional and physical resources we need, we eventually apply self compassion and self forgiveness as well as forgiving others. Nobody knew!
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Best of all you will discover you are not the “only one” and that everything and every struggle was not “all your fault” due to moral failures or lack of strength of character or many other traits others assigned you over your previous life. We struggled to do so many things in daily life that others did naturally and unconsciously. We are survivors in so many ways!
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Learn all you can about your diagnosis. There are so many recent books, podcasts, videos, social media, blogs, personal pages, and autism groups you can join online as well as “in person ” in many places. I find the online groups wonderful. Where else can we get so many insights, so much information, suggestions and explanations from others who have lifetimes of Autism experience???
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As you get insights about your personal struggles, you can begin to change things about your routines, clothing, arrangements, activities, and make adjustments or find “work arounds” to almost any struggles to make your life easier every day.
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Eventually the whirlwinds settle , now 5 years since my diagnosis at age 68 life has never been better. I hope this for you as well.

After Autism Diagnosis

( or did they tell you that you are not, after all, autistic?)

So many adults finally find a professional who is willing to do an assessment and go eagerly to find out if they are indeed autistic. Many wonder if they will be told they are autistic, that they are not, or that they are “something else” instead.

My first attempt at diagnosis I was labeled with 5 other serious diagnoses to explain my test results , and was mocked, ridiculed, and scolded… I had a family, married with children, had worked jobs. Autistic people did none of those things! It was obvious immediately that this doctor ( a neuro psychologist) had not updated his knowledge of autism since his original college classes back in the early 1980s. Although his staff had told me he had plenty of experience with diagnosing autism in adults and with adult women, he told me at the evaluation summary “autism just doesn’t come into it” and that he had never diagnosed a single adult with autism in his career. This spanned about 40 years of doing neuropsychiatric evaluations, up to 350 per year and he told me he had a couple thousand patients under his supervision. Statistically 2 to 3 percent of those individuals were likely autistic but he never saw one!

I can’t stress how important it is to find somebody who has actually had a lot of experience with diagnosing and working with autistic adults. If I had insisted on talking to the doctor and asking how many autistic individuals he had diagnosed over the years, this whole failed attempt at diagnosis would not have happened.

The experience of “missed” or “mis” diagnosis is quite common among adults seeking to learn more about their own neurology and to find out if they are autistic (here in the USA, and likely many other places too, from reports I have read)

What has been interesting about this failed attempt was that the test results and written evaluation summary from this experience has been very useful for self understanding.
I took the test results with me to the second attempt at diagnosis with a very experienced autism specialist. He showed me in the test results how it showed very clearly that the doctor who did the testing simply was not familiar enough with today’s understanding of autism to recognize it and instead had given me labels he was familiar with.

The summary showed that I was highly gifted in a few areas, adequate in a few and abysmally poor in performance in other sections of the testing. In other words my performance had peaks and valleys, showing clearly my uneven neurological development. Charts of average/neurotypical people generally are similar in levels of performance throughout the test sections, sort of little hills instead of the very sharp contrast of performances in different part.

So I got my diagnosis from somebody who actually understood my autism, but that first neuropsychological test report revealed many strengths and weaknesses of my autism and my neurology.

I have been able to use the results for better self understanding and for making self accommodations. Although it was very upsetting at the time, it has turned out to have been useful in several ways and I have referred to it repeatedly in the 5 years since.

Since this (misdiagnosis or missed diagnosis ) happens often among those adults seeking testing, I wanted to bring it up.

Don’t worry if the person doing the diagnosis says you are not autistic, there may still be very many ways the evaluation and summary can be useful going forward.

If their explanations answer your questions, maybe you really are “something else”.

If you are certain you are autistic and your assessor does not have understanding of today’s definition of autism, you can still use the test results to help yourself make adjustments to your life. You can continue to seek a competent and up to date evaluation from an autism specialist.

Finding a competent assessor for adults is a struggle today. That is why so many groups online and in person accept self identification of ASD.

More about diagnosis aftermath soon!

Autism diagnosis Its OK

Its OK if others don’t believe in your diagnosis or accept it.

So, today let’s say I finally figured out “what is wrong with me”…….. I suddenly understood that I had different neurology, either through a sudden insight, long study, or professional diagnosis. I am autistic. I have always been autistic. It explains so many struggles of my past. I can suddenly understand a lifetime of “whys” by seeing how Autism had its workings behind the scenes and nobody knew! I am excited!

It is such a relief to finally understand that I am not wrong, or bad or morally weak or deliberately evil. My neurology has impaired my understanding in social situations, given me a tendency to misunderstand and miscommunicate, I may have other struggles, such as time management or organization skills that are not what have been expected of me. It is not my fault! My neurology has been to blame for my lifetime of struggles where others seem to thrive. What a relief!

I rush right off and tell my best friend, my family, my co workers and instead of being excited and happy for me, they scoff, saying “no you’re not”, “you can’t be autistic “because (a thousand reasons such as you don’t look or act autistic etc).

Oh, that was unexpected.

My mother does not believe I am autistic, says she would have known. My sister says I am trying to get attention for myself, my co workers say I am trying to escape my responsibilities and making excuses for lack of performance. Now suddenly I am devastated. They don’t accept my diagnosis, they don’t believe me! They think I am making it up, thinking I am doing this to cause trouble. Now what? How do I make them understand and accept my diagnosis???

Answer: I can’t, and I won’t even try.
Its OK for them to think whatever they want to think about my diagnosis.
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This experience is quite common among the most recently diagnosed individuals who want to share the exciting information they have just received.

I am here to tell you its OK if they scoff, if they misunderstand, if they disbelieve. Ignorance and stigma run deep. Its OK if they want to believe differently. You don’t have to explain, ask permission, educate, justify, or apologize.
The experience of becoming diagnosed may not change the way they think about you or the way they interact with you, or the way they expect you to behave, believe, think, perform, etc. . you may get acceptance and support but don’t expect that! Many people will want to cling to the old ways of interacting, their own beliefs and feelings of guilt, shame, misunderstanding may impede a healthy exchange of information. Its OK if they struggle with adjusting to or accepting your diagnosis too.

Diagnosis will mean a world of difference to you but to them, not much will change and they will mostly be unwilling to change to help make your life easier and better. That is human nature. Change can be scary for anybody.

They may even make remarks saying things were better, easier, happier, etc. before your diagnosis.

Well, for them maybe that is true, but their opinion is their business.

It is not our job to change ourselves or our own self understanding or our ways of self support and accommodation to suit their opinions.

Its OK if they don’t accept adjustments you make to your schedules and activities to remove the things that distress you the most, make you sick with anxiety, cause overwhelm and overload, or that are simply something that you have only been doing to please another person.

It is OK to give yourself your best self care, to dress the way that is comfortable for you, to use stims for self comfort, to choose something else besides the demands and expectations others have for what they want of you at any time.

Its OK to have your own agenda, your own enjoyment, your own independent life, free of their opinions and their pressure to conform to their demands, their anger, their manipulation, abuse, shame and blame.

Knowing about our autism sets us free to see ourselves not as losers, broken and incompetent, aggravating, infuriating, impediments to other’s lives, etc. After what may have been a lifetime of failed expectations of others we can finally be free to be ourselves in our own way at our own pace and in our own style.

Its OK if they accept and support your diagnosis as they see you making progress and finding life better and healthier as you learn more about your neurology and put adjustments for self accommodation into place. This may happen in many cases. Its Ok if they never do understand.

You do not have to have any other person’s approval or acceptance or permission to find self understanding and find a healthier way to live your own life.

Its OK to be who you are in the best way you can going forward as you sort it all out and make adjustments to make every day life easier and better for yourself..

Autism Masking/Unmasking

“unmasking” IS self accommodation.

So much media right now is focusing on autism and masking/ unmasking today’s catch phrases.

This seems to be a difficult concept for many newly diagnosed adults to understand.

Misunderstandings abound, and I worry about the harm being done to individuals who feel now that they MUST unmask completely or risk their health, mental health, or risk doing themselves perpetual harm if they don’t perform this mystical ritual. In the forums I attend, there is so much distress over this . “I want to unmask but I don’t know how” with desperate pleas for help.

Many books have been written and loads of podcasts, pages, etc are filling up with discussion, false information, frustrating and scaring many individuals if I am reading the posts in recent forum interactions online correctly.

So of course I have to jump in and offer my own opinion, explanation, and insights/ beliefs surrounding these recent popular “catch words” in the autism community.

First of all, as in any other situation, check your sources! Many people are being paid to perform, whether it is books, videos, podcasts, blogs, media pages or venues such as tiktoc, FB, X or other instant info media. Who benefits? Who is making money from selling books, touting this “new insight” and “how to do it”, who is behind the push and the social pressure to “unmask”???? Should you be afraid, concerned, desperate to cure yourself and throw off all social discomfort to boldly and blatantly do what you have maybe never done before in your life?
Are claims backed up by studies, are actual statistics available to support claims for statistics and claims for the harm supposedly done? How does one prove those claims ?

What must you do to be the “true you” in all situations and all possible ways no matter what?
( this seems to be the “counter demand” of many of those pushing “unmasking” today.
No wonder people are confused!)

Definitions vary. “masking” is generally considered the same as “camouflage” behavior, or socially adapting behavior common to society’s demands, deliberately hiding the ways we might be different, despite the distress or discomfort, physical, emotional, or mental toll such techniques may cause in us.

I define masking as forcing oneself to do things that others expect of you regardless of how difficult or stressful it is to you. This includes a wide variety of social adaptations, dressing in acceptable ways, behaving within certain defined social boundaries, regardless of the emotional, mental, or physical toll on our neurology or our limitations or abilities.

I masked most of my life , school, relationships, work all demanded that I play a role and perform to certain standards. This is not just an “autism thing” but is something that all humans practice in any social situation. Performing “as expected” can be much more difficult in many circumstances for neurodivergent or autistic folks. How far will we push ourselves when our neurology refuses to cooperate?

Where masking becomes unhealthy is the place where we find ourselves physically sick, emotionally distraught, mentally stressed and distressed repeatedly.
When our physical and mental health struggles become obvious to ourselves and others around us.
So many of us (autistic folks particularly, although I suspect this applies to everybody else too) make ourselves sick to please others, to try to fit in, to gain approval, to succeed in a job or a relationship, to be accepted and simply to avoid social pressure to conform, perform, or to please the boss, the teacher, the preacher, the neighbors, the spouse, the “Others” of this world.

Because many of us are not good at understanding our own emotions or physical feedback, the demands we place upon ourselves can exceed our capacity to perform successfully. Result is meltdowns, shutdowns, burnouts, mental illness, suicide attempts, breakdowns, and more.

Here is the thing I want to say. When we hear the term “unmasking” we are actually talking about self accommodation and self care. We simply have not recognized that there are things we can do to make our lives better each day and there are hundreds of ways we can adapt and change in almost any struggle.

Many of these adaptations will take some “thinking through” and “working around” to achieve.

In the process of making self adaptations, you will automatically “unmask” as you go and help yourself uncover the things about yourself that have been neglected, put aside, pushed away in order to perform as required/requested/demanded/pressured/in society including private relationships .

We may have focused so long and hard on pleasing others and trying to meet their demands, we have not discovered that we have alternatives and that we have needs, wants, thoughts, ideas of our own which may have been completely locked away as we push, push, pushed to perfect our assigned roles and perform as others expected.

So this is about expectations, about choosing when, where, how to perform to please others, and about putting your own needs first and finding ways to help yourself do better and be healthier, saner, safer, and live in less stressful and distressing ways every single day.

Once we recognize the things we are forcing ourselves to do are causing such stress and distress, we can take those struggles one by one and figure out different ways to do them. We can substitute behavior, rituals, schedules, routines, clothing, food, locations, social interactions, jobs, the company we keep, and so much more. (that is self care and self accommodation)

Start by figuring out what every day problems or activities are the most distressing or difficult for you. Your job making you sick with anxiety? Your co- workers, spouse, boss bullying you and harassing you? The clothing that you wear a constant battle, too uncomfortable? The lights, the sounds, the constant demands to perform in certain ways?

Each can be broken down to it smallest elements. Each can be changed. Sometimes it may take emotional homework, discord and disagreement, major changes to your life, but many adjustments can be made in many different ways to eliminate one at a time, things that are making you upset, tired, burnt out, triggered with anxiety, anger, upset, distress.

When you discover and admit that you are struggling with doing things asked of you, you can decide for yourself if you want to continue, change, arrange, compromise, or find new tools or ways to do what is bothering you on major or minor levels.

“unmasking” IS self accommodation.

One step at a time, making adjustments to live the life you need and want and not doing things that make you miserable to please or appease others.

There are likely a hundred different ways to solve most problems we face. But first we have to recognize that we are struggling.
Then we can figure out what to do about it.
One struggle at a time.

5 years past diagnosis, I am mostly “adjusted” and self understanding that comes with diagnosis has helped so much.

Realize that uncovering your struggles and making adjustments to your life in so many ways will take time.

Do your best self care, make sure you put your own health and needs first so that you have the energy and emotional resources to face each day as you move forward. You are definitely not alone!

Disclosure of Autism Diagnosis?

Now you know you are autistic, should you tell others?

Disclosure of an autism diagnosis is a very personal thing. Be aware first that there is no such thing as “keeping it a secret”. If you tell one person, they may feel free to talk about your diagnosis with others, especially among family members or friends.

People choose not to disclose their autism if they feel it may bring on discrimination, stigma, or somehow affect social or professional standing.
Stigma is real, many people today do not understand what Autism Is and discriminate and make judgments automatically.
Some may want to avoid stigma and “instant judgement” that comes with what amounts to yet another label. That is certainly understandable.
Certain employers or individuals we meet may change the way they treat us because of our autism diagnosis. This may be true of family members or friends, too.

Others choose to disclose their diagnosis to obtain support on the job through accommodations, or to obtain government financial support or access through certain programs available to the handicapped.
Some, like me, disclose my autism because I write about what its like to be an old autistic individual in today’s society. Saying “I believe I am autistic, let me tell you about it” does not have the “authenticity” or “authority” that telling people I was diagnosed at this late age (68 at diagnosis, now in 2024 almost 73 years of age) and explain the experience and insights I have gained after diagnosis.

Disclosure for others may be a way of letting family and friends know that everything all those years ago was not, after all, all your fault, but that you have an actual neurological condition which causes you struggles you never suspected for most of your life. Disclosing diagnosis explains to others your quirks, your brilliance, your odd little things that seemed until now inexplicable to others.

Expect reactions to vary in each individual. You might be surprised at who is accepting and supportive, and who scoffs or mocks or refuses to learn about it all.
Be aware that once you do disclose, there is not putting the rabbit back in the hat. That news is out there and even if you refuse to discuss your diagnosis, others will! ( often behind your back). (but maybe they do that anyways).

There is no right or wrong decision, everything depends on what is right for you. Think it through thoroughly, don’t expect any person you tell to actually “keep it a secret”.
Do what is right for you.

Nobody Knew!

A lifetime of shame and blame for sensory processing disorders.

Those of us who grew up before diagnosis and understanding of disabilities surrounding sensory processing, autism, adhd, learning disabilities such as dyslexia, were blamed for our struggles.

Were you told “you just don’t try”, “you are not paying attention” “you are lazy”, “You know very well what you have done”, “pull yourself together” “get with it” and other shaming and blaming comments, frequently with punishments according to the failure to perform as expected?? So many of us lived lives of misery trying to explain how hard we were trying and being punished for things we failed at which were beyond our neurological abilities. Nobody knew.

In the days when many of us grew up, failure to take personal responsibility and to perform as expected was considered mental weakness, moral weakness, or even worse, we were given labels “stupid” “idiot” “simpleton” … you can fill in the blanks.

Many of us carry the scars of well meaning “correction”, emotional or physical, or both, testimony to the concern of parents, educators, religious leaders, and others “back then” who were advocates of punishment as the way to correct and control any failure of children right through adulthood, beginning in some cases before the child could even speak.

Today we know so much more about autism and the neurology of so many ways we struggle to perform.

This is such a relief and vindication for so many of us born before 1980, when autism was first diagnosed, when understanding of neurological function struggles was just being discovered.

We have come such a long way from those roots of scientific searches to explain why so many of us failed to thrive, failed to perform, failed to live up to expectations or to fit into society and its mandates. But many of us carry scars in our minds, hearts, souls as well as our bodies.

It was such a relief to finally understand the lifetime of failures I had lived before I got that diagnosis . “Autism” explained so much. “Autism ” answered almost all the “whys” of a long and painful life of struggles.

I never understood that I had struggles which most other people did not. What a relief! It is never too late to find new understanding .

It is wonderful to me that so many adults today are learning about autism and how it worked behind the scenes all our lives without knowing or understanding, our own or that of others.
Now we can make our own lives better through self understanding and self accommodation. We have the answers and the means to discover new tools to help us every day.

Nobody knew!

Learning about Autism

Where do I start?

What if you have just started thinking you might be autistic? How do you go about finding out?

Lots of us muse and speculate, remember, sort and mull ideas, emotions and information we already know, or think we know before we decide to take a closer look to gain deeper understanding. Some of us never get beyond the “what if” stage. That is OK.

For those of us who want to know more there are thousands of pages of information and thousands of hours of podcasts and videos or other visual media available. There are at least a few hundred books, articles, blogs and pages about adult autism available today.

I just jumped in and began looking for information from all of them. Since I am most comfortable with books, I started there, looking for “training wheels” sort of “beginner” books with simple basic information about autism.

I soon learned autism is a heavily divided and contested topic, with many very strong opinions “out there” trying to shout each other down and to claim their way to address autism is the best or only way and to attempt to erase other ideas or positions, opinions or outlooks.

Each of us must form our own opinions about the politics surrounding autism.

I looked first for very basic information. I quickly learned about false information and controversial “cures”.

Be skeptical when you start learning, question everything and see if claims hold up in the light of other’s input.
Look at all possible sides of claims and opinions expressed and use your own judgement.
I did not suspect all the surrounding political and unscientific hooey that I would find.
Being aware it is “out there” can help sort fact from fallacy. Don’t take anything at face value. Look for studies, documentation, references, links that agree and back up claims.

Start by gathering basic information about the nature of autism, how it works and expresses itself in individuals, watch for ways which you might have experienced some of the autistic struggles and differences described.

Most of what is written about autism is aimed at children and at parents. With this in mind, I found it very useful to look at my own childhood/growing up and to compare my experiences with descriptions made on articles addressing childhood autism.

You may find many of these before you find the 400 times as rare articles on older adults and autism.

There simply has not been interest in older adults having autism until very recently. There are a few on line forums for autistic adults. There are articles addressing “late diagnosis” of autism. These articles are generally by 15 to 30 year old individuals! The information and insights in them may be helpful to you none the less.

The pages here are intended to help those older adults new to the idea of autism find basic information all in one place. There are online forums like this and also several other blog pages which have insights and information as well.

If you prefer to view information or listen to it, there are podcasts and videos available too.

Once you have basic information you will have loads of questions. Getting more input will usually answer most of these, but I found that joining a group page where I could ask specific questions about autism helped me tremendously.

I got a lot of “whys” answered by others who shared their experience and insights of being older autistic adults and having been diagnosed or self identified for much longer than I was.

Getting input and building an information base and a foundation for understanding was the first step. I think it is good to continue to seek out new information and more insights as you grow in self understanding and begin to sort your past with new perspective. If you are like me, you will be so interested as you go through the process, that you will keep seeking more understanding. So many “whys” of the past answered, finding “how to” is so helpful!

I am about 6 years in from my first “I wonder” thoughts through diagnosis 3 years ago. I am still having “aha” moments as I learn more about autism and remember things from my past experiences.

Things keep getting better. I’m here cheering you on as you begin your journey, knowing the information you obtain now will be useful for the rest of your life. You are definitely not alone!

Autism and Stigma

How do autistic adults experience stigma?

According to the neurologist who examined me first, autistic people are unaware that they are being bullied, stigmatized and socially isolated.
Almost all presumptions he was taught in the 1970’s and 80’s about social experience for autistic people has proved to be wrong.
Today even science recognizes that we are aware of being stigmatized due to our autism.
We feel isolated, we feel lonely, we feel it when we understand we are being avoided, patronized, mocked, bullied, selected for persecution and unwanted aggression due to our differences.

A few weeks ago I accepted a friendship request on Facebook from a man who belonged to a special interest page that I am also a member of.
I looked at his posts and decided he was safe. OK, friend request accepted. Now we can share info, see each other’s posts, and interact with each other on our personal pages.
I have many online friends and enjoy the interactions immensely. Since I do not do well in “real time” interactions due to my slow visual and audio processing issues, facebook and other internet web pages really do work as my “social life”.

Hours later, he sent me a message asking me to ” unfriend him” . It seems that he had his facebook page only for close friends and family members. (untrue, I had seen his page and some of the other friends were also members of the same special interest group). Well, I can be grateful that he didn’t just “block” and “unfriend” me, I suppose. I think he saw my link on my personal page that shows my blog address “old lady with autism”. and it scared him off.

It is unlikely that my politics or my random comments offended him, I keep my political ideas to myself and don’t randomly rant about sensitive issues, I find all of that too upsetting and I don’t like to fight or to justify myself, I have said before, I am a lover, not a fighter. I do off and on post links to diagnosis of autism in adults but it is not even 10 percent of my normal content. I have drawn others specifically, I think because of my being open about being autistic.

Thinking about this experience, and also reading about how another neurodivergent friend was harassed and bullied and mocked because of her posts on another special interest page, I thought I might do a bit of research on how autistic folk are affected by stigma.

Guess what?
There were pages and pages of rants, commiseration, sympathy, empathy, discussion and suggestions for parents, siblings, caretakers of autistic children and one which also included caretakers of adult children.
There were studies and pages of blogs, support groups, “educational pages” planted to draw business for therapy groups and institutions, etc. all about how families and parents and partners and caretakers experience stigma over the autistic individual’s differences and stuggles…….
and, ( you know what I am going to say next) not ONE page about how autistic people experience stigma, not one study, only a few blogs by autistic folk like me.

Draw your own conclusions. I have no answers, but I can see a problem here…. can you?

Every Day Autism

or: Autism Every Day

In the process of finding myself as I age, I have been able to make many adjustments to my life that make things more comfortable. Everybody must do this, arrange our homes, our schedules, our routines, etc to make things work for us.
I am often able to simply go through life without a lot of struggles because I have made accommodations for myself.

Over the past few days, we went to visit a family member in a place unknown to me. We joined other family members who were there as well. A joyous reunion!
We stayed several days and then drove home again. Not something that happens very often in my life.

Being newly diagnosed and still becoming aware of my own autism and its struggles and strengths, I thought about my newly discovered diagnosis related to this novel experience, and had a series of “aha” moments.

In my recent experiences I was reminded about how much of my life is affected by my autism and I am gaining more perspective on my own struggles and how it affects others as well.

We drove about 7 hours one way to get there. We stopped twice. We had our dog with us .

I definitely needed my sun glasses to help control the flashing light and glare of light and shadow. In many places sun through the trees made powerful strobe effects. I understand why I get car sick/motion sick… my visual and audio processing can not keep up! I was mildly nauseated to almost completely sick – fluctuating at various times. I felt definitely disoriented, and anxious through out the trip. These things have been true whenever I traveled in the past. Now I know why!
( autisim and associated neurological processing struggles)

I was anxious about getting lost, anxious about the high speeds my husband drives at, anxious about his driving (miles and miles of accident free driving in his history) hypervigilant and fearful all the way there (and back). The dog did not travel well, and this added to my anxiety and concern.

Wearing masks and trying to avoid people, cleaning hands and etc at rest stops (we brought our own food in the car to avoid extra contact with strangers, etc) , also added another unfamiliar and very uncomfortable dimension to trip taking.

When we got there, our other family members were there, and we had a happy reunion, hugs exchanged, and days of talking and eating ensued. I found I could not follow or understand most of the information being exchanged. Everybody talking excitedly at once left me covering my ears, asking for clarity, needing explanations or lots of repeated statements, etc.
After several days of working hard to follow, understand, communicate, reach out and interact, I have wiped out my “coping tools” and need time to re charge and process all that input. I suspect I missed about 90 percent of information exchanged. The love and joy of our being together at last overshadowed this and compensated for a lot of the things I know I missed.

I woke hours before everybody else. In my everyday routine, I rise around 4 Am, I go online for a few hours, prepare my coffee and make breakfast, go back online to catch up on my autisim forum groups, do research, visit pages I use very day. No computer here, mine is a desktop and not portable. I read the only book I had brought with me the first morning I was awake.
I had not planned on hours alone in a strange place without resources to help me through… no computer, it was freezing cold in the unaccustomed air conditioning ( welcome during 90 degree day times but frigid at night and early mornings.
I slept very little and felt lost a lot. I had no resources to self accommodate. I had not even brought a sweatshirt or warm clothing.
I was invited to go on a couple of excursions in the big city nearby, but I became anxious at the thought of it, it had not been planned, I was not driving, I did not know the city or anything about it. Too big, too scary, too unknown. If I had a few days to prepare and to study maps, write instructions, print or draw a map or two…. I might have done OK… as it was, everything was unknown and unexpected. I don’t often do things without previous plans and insights, “impropomptu” is not part of my usual life practices.

I go to bed when it gets dark. The others stayed up till the approach of dawn and slept 4 to 5 hours later than I did.

We ate together, we talked, laughed, remembered, shared love, memories, insights, and enjoyed each other’s company. We will all no doubt need lots of extra time to rest and recoup, adjust and return to normal. ( all of us have neurological struggles of all sorts)
I have once again become aware of my autism and how much it takes to step outside the safety net of routine and familiarity, isolation and structure, and of the exhausting effect of the attempts to keep up with rapid changes, attempts to understand new and different surroundings, and to understand and communicate within groups of people, even very beloved people in social interactions , situations, locations, routines and new experiences, solo or shared.

Now two days home and lots of hours of sleep, normal life resumed at our usual quiet pace, I am beginning to recover my emotional, intellectual, and physical equilibrium.

I suspect it is going to be even more difficult as I become older. I need to think a bit more about how to make the adjustments I will be needing. I am so grateful for the opportunity to see those I love and care about most deeply, also for my new and deeper understanding of my own strengths and weaknesses in the new context of my autism and the ways I must do things to be at my best.

I had not stopped to consider “every day” autism, the challenges I deal with every day when those challenges are suddenly transported to new situations, environments, experiences, etc.

I sometimes think I am doing very well.

Experiences like this, positive though it was, remind me of the limits to my established ways of coping.

How much more difficult for those brothers and sisters in autism who have so many challenges I don’t have??

How much more difficult for those who don’t have choices to participate or to travel, or to be thrust repeatedly into new and bewildering or frightening situations?

The thing that is different now is knowing I do experience “every day” challenges that others simply don’t have. Diagnosis is life changing.