Autistic Regression in adults

Failure to perform as expected. Its not unnatural and you are not “broken”.

This is at the end of October, 2025. I am seeing more and more posts about “autistic regression” in adults.
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Once again the expectation of performance and failure to perform is being pushed as a struggle, a trial, a measure of fitting in. If you don’t perform there is a problem!
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As infants and children we are measured by our growth and developing physical abilities, weight gain, ability to sit alone, to roll over, to walk, to talk, and shortly later our ability to use the toilet, to tie one’s own shoes or to ride a bicycle, etc.
As children we are generally forced to participate in nursery school (for many) daycare ( for many) and school of one sort or another. These generally group all children together and social behaviors become more important, obedience, ability to absorb information presented in various ways, working together on projects, playing interactive games requiring cooperation and focus on a common goal, and other skills are gained at this time. Many ASD kids find much of this a struggle, along with sensory struggles. Such participation does not come easily but requires conscious effort constantly.
Kids will come home exhausted and depleted physically and emotionally because their struggles with their neurology requires more effort to perform, to fit in, to get along, to live up to expectations. Kids come home and melt down, lock up, freeze, hide, get physically sick, often when parents expect them to change gears and perform interactively with other family members or help in household chores, etc. There is not enough time to “change gears” Do you remember this from your own childhood?
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We may force ourselves to endure bright lights, loud noises, distracting activity, smells, the closeness of others, etc. because it is expected of us, but it takes a toll.

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Fast forward to most “work” environments. We still find we struggle to fit in, to tolerate many social and sensory struggles and try to perform as expected.

Once again the struggles are there to change gears from workplace overwhelm to home’s demands. We push, push, push to fit in one more thing, to accomplish one more goal, to finish one more project. Can you see how self care is lacking in this story all along?

This may take a toll in our health both mentally and physically, with kids developing emotional and physical symptoms of the distress that such programs cause. We are sick more often, we may be in trouble more often, we may miss more school or work days due to upset, illness, etc. But we did it/ do it because we were expected to perform. Most of us try so hard!
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Just because we forced ourselves to perform at these levels and tolerated such situations as those at school, office, factory, or social situations such as parties, loud get togethers in public places, does not mean we did it easily. We didn’t then and we don’t now. Our neurology has not changed. For most of us we have adapted more ways of coping.
We may not have put together that each time we went to a family function we developed headache and dizziness or vomiting and had to remove ourselves to a quiet place. We may not have associated our exhaustion or deep sadness, anxiety or easy frustration and explosions of anger as caused by our environments and the extreme amount of energy and concentration it may take for us to “perform as expected”.

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I see the idea of “autistic regression” as being yet another way that the “normal” world is measuring us and finding our performance lacking. I see this term used by many “therapists” in discussion of autism in videos, papers and articles recently. Pointing out our “regression” is showing us how we fail and finding how to make us more “normal” to “help” us fit into society’s boxes and get us to live up to the things we “used to be capable of”. WE are expected to suck it up and force ourselves to continue to try to meet expectations at any cost to ourselves.
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Many of us have forced ourselves for years to perform as expected and eventually we find we do not have the emotional or physical resources to perform “as usual”. Things may change over time to make what was once possible more difficult for us.
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Take a moment and think about how life changes.
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We age and are not as physically fit to be able to do that hard physical labor. We have changes circumstances , have moved household or moved out on our own, our support systems changed, we had children, take on pets or projects, our partners joined us or left us, our job description changed, new work partners or procedures were set in place. So many changes added but still expected to “keep performing”????
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There are a thousand reasons why we suddenly just can’t cope, can’t live up to expectations of performance in one or more areas of our lives. We have suddenly taken on one or more things “too much” and gone into overload of our neurology. We may have unhealthy ways of coping (overeating, smoking, drinking, drug use for example). WE may never have learned how to pace ourselves and how to take care of our own needs because we have been so busy trying to keep up.

We may not have learned how to balance our lives . When the cup is filled, it overflows and things don’t function as well. When you have taken on too much, you will find life is “too much” too.
We may never have got the tools we needed for healthy living, healthy communication skills, ability to say NO and negotiate with others, compromise, or self-regulate. These are things we can learn and change. But for our health and our sanity, not for the purpose of adding “one more thing and ending up with overload, meltdown, shutdown, breakdown, lockup, or loss of health and important relationships, property or self.
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“Autistic regression” is not a failure of our neurology, but yet another way for others to tell us we are failing. “you did it once, why can’t you do it now? ” , is often part of others’ complaints once we get diagnosis and self-understanding, and we begin to do self-accommodation.
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The things we force ourselves to do to please others which also cause us anxiety, distress, emotional or even physical pain, sensory struggles, are things we may need to compromise on.
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What we are dealing with when we “regress” may actually be normal adjustments that any overtaxed, overloaded, distressed, and or anxious individual would make. Slow down, lose some of the extra commitments, find new ways to do old things. We grow and we change and not all changes from something we “used to do” to something else are negative. “regression” is a sign that changes are needed, and not a sign that you must try harder. “Regressive” traits are the consequences and signs of overload, of overwhelm, of trauma and anxiety, of ageing and abilities which change naturally over time (we are not the same at 40 physically as we are at 20, not the same at 60 as we were at 40)

Don’t let somebody else measure your performance and tell you that you have regressed, rather check your lifestyle and your goals, your abilities and your health, set priorities and refuse to do things simply to please others that take a toll on your mental health, your physical condition, your stress and anxiety levels.

You are the best judge of what is right for you.

Others’ demands are first on the list when they tell you that you are “regressing”.

When you hear that phrase being applied to yourself, take a close look at your life and see how you can adjust it to avoid burnout, meltdowns, shutdowns, and lockups. “Regression” of skills used comparatively against us is a demand for performance.

Some loss of abilities and skills or performance levels as we age are inevitable.

Make sure that you are performing for your own needs, wants, expectations and desires and not striving to meet goals set by others in their own interests.

Forcing ourselves to perform simply to please others is not necessary or healthy.
Self care always first. Its a lot to sort.

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.

Autism diagnosis process

What happens during the Autism assessment?

People seeking diagnosis and anxiously waiting for that far off appointment often wonder what is going to happen? What is the procedure that is followed? How are tests performed? What are they looking for?

Autism diagnosis is based on traits that have been observed since its discovery, and the testing procedure, standard measures of performance and understanding are based on behavior rather than neurological testing. That seems odd, doesn’t it, considering that we know autism is based in neurological function and sensory processing struggles due to uneven neurological development that happens before we are even born. Some autistic like traits may be observed in individuals who have suffered trauma or have been in severe accidents, but these symptoms are due to “something else”. ( although autistic people can also suffer trauma and severe accidents).
So criteria was set out for diagnosis and the guidelines for diagnosing autism which have been the standard for many years are laid out in the Diagnostic and Statistical Manual of Mental Disorders (now version 5) published by the American Psychiatric Association. The tools used and the standards are still based in discoveries and assumptions of early days in science’s understanding of ASD. You can find the entire section about autism diagnosis and the actual wording of the whole Autism description and testing online. Try using ” DSM5 American Psychiatric Autism” as a search phrase.

Behaviors are observed, tested, and categorized/rated. There are several categories of behaviors that are looked for and those being tested must meet criteria from each category in order to be designated as autistic.

To be diagnosed as autistic we must have struggles with communication, Social struggles, and rigid thinking with repetitive behaviors, (sometimes called the “diagnostic triad” of autism”
and today many diagnosing professionals also look for sensory processing struggles.

Most diagnostic processes begin with an interview that determines if we are candidates for autism testing. Most people receive “Comprehensive psychiatric evaluation” Tests may also include neurological testing, special tests designed to indicate possible mental illnesses (many individuals also receive other diagnoses or are already diagnosed with other conditions)
Tests are in the form of booklets/ paper, some are spoken questions and answers, some may be administered online using computer prompts and fill in style responses. There are basic questions about health and history, where you will be asked about your childhood and any early traits of autism you may have shown while growing up. Some facilities/ testing procedures ask for input of somebody who has known you for a long time , parents give input for small children, with older adults, their parents may have passed, they may not have a spouse, etc. or anybody who can speak of long time behaviors. this is not a rigid requirement in order to obtain diagnosis but is considered helpful to know. Some testing is done with tabletop manipulation of pieces to duplicate a shown image, some testing may require us to draw and image we saw previously, or to indicate which image most closely matches the one we saw.
I found the testing fascinating and was very interested in trying to figure out what the tests were trying to discover. We may be asked to draw a face, clock face, any other thing, we may be asked to play “word games” or to do things with numbers.
Don’t worry if you do not do well in some sections of testing, failure is just as informative as wild success, because it is all meant to understand how we think, how we process information or sensory input. Tests reveal strengths and weaknesses and those who are autistic frequently show extreme performance or extreme under performance in various places of the tests because of our uneven neurological development. The test is not “pass fail” but designed to show what our neurology excels with and what are true struggles for us. There is no shame in struggling with any test section or request to perform. I gave up completely on a couple of them, my brain simply refused to “go there” and what was asked of me was impossible for me to perform.
Thats OK, this is exactly what testing is supposed to reveal!

Testing and interviews usually last from 2 to 8 hours, and we may be asked to come in for a preliminary appointment interview and to come back for a diagnosis summary.
If possible, ask for a written diagnosis summary with test results. These can come in so handy for self understanding and for making self accommodations. Sometimes printed results take time to assemble and you may have to be patient or make inquiries at the office to make sure you get them, although in some cases, you are given these as part of the “follow up” appointment. Do not be afraid to ask for explanations or to ask questions.

If you are anxious before testing, or at any other time, do tell them, they will understand and try to help you get through it all.

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..

Not my job

Autism, appeasement, people pleasing

I grew up in fear, lived most of my life in fear, beginning with corporal punishment from my caretakers before I could even speak.
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I learned early on that I must try to please those around me in every way to avoid punishment. I learned to be obedient, submissive, “helpful”, quiet, to keep my thoughts and opinions to myself, that nobody wanted to hear about my interests, my thoughts, my wishes.
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I learned that to resist any suggestions, directions, orders, requests, or demands was to be a bad person, terrible, selfish, hateful, thoughtless, insensitive, evil, greedy, ( this would be a very long list if I completed all the negative descriptions and discussed the anger, punishment and treatment that went along with them)
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Today we know appeasement behavior comes from trauma, it is one of the instinctive responses to trauma. Fight, Flight, freeze, and appease/fawning are all responses to trauma. We use them to save ourselves from dangerous situations (traumatic events) early in our lives, or whenever the trauma begins.
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I became hypervigilant, wary and very aware of any signs in others that they might be angry, unhappy with me in any way.
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I never learned healthy interactions with others in my “growing up” home, nor in the disaster that was my first (abusive) marriage.
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I finally got therapy as an adult. The therapist was able to explain the unhealthy dynamics of my relationships, all based on me pleasing others as a response.
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I learned that I was not ever, (ever, ever, ever) responsible for another person’s happiness.
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I learned that I did not “make” another person angry, I learned that it was not my job to serve and please others, not my job to give them my possessions, my body, my labor, my paycheck, my time and effort. ( its not your responsibility either!)
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I am not responsible for anybody else’s happiness and comfort but my own.
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This was a huge concept and difficult to figure out. All my life I had been told that I made others angry, that I made them unhappy, that I hurt their feelings, that I caused them emotional pain, caused them inconvenience, that I caused them distress. It was always my job to fix that!
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I tried so hard! I learned eventually through therapy and so many patient explanations from that blessed therapist, that I am not responsible for the way others see the world, how they experience any event in their lives, that I have not got to fix things at any sign, signal, request, demand for my services, servitude, actions or interactions.
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It was a very difficult concept to understand. Autism’s inflexible thinking no doubt hindered my progress at first.
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I learned how to say NO, how to set boundaries, how to recognize when I was being used, abused, intimidated, manipulated, and how to enforce the boundaries.
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I learned how to make healthy choices for myself and not to weigh the results regarding what others thought, felt, believed, or insisted on, but only what was right for me.
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This was such a huge change from the way I had always thought and believed (and behaved).
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I still fall back on appeasement from time to time, but for the most part have learned new techniques to help myself consider what I feel, think, want, believe in making healthier choices.
(This can be done! If I could do it, I believe almost anybody can)
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The difference in my life set me free. I can’t tell you how different my life has been since I finally found out that the way we have been taught is not necessarily the way things must be forever.
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I was given new communication skills/ tools, and learned that I could choose for myself what is right for me.
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It is not our job to make others happy, to fix anything for their problems or situations in this world.
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It is not our duty to be sure that others get what they want in any way at all.
(read that again and rub it in , repeat when necessary)
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In case you have not discovered this concept, give it some thought.

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So may older autistic adults were raised using physical and emotional abusive coercion, can you see how this might apply to your own traumatic past????
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You can do something about it. You don’t have to live in fear. This fact was one of the most difficult concepts to learn and learning how to free myself has been a struggle, but the difference in my life has been that of night vs. day.
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Are you afraid of displeasing others? Are you sacrificing yourself and giving all of your time and efforts to pleasing the aims, demands, desires of others? Its something to think about!

New tool I can use

what I learned while rock hunting

I have written about how useful it has been for me to use the internet to find connections with like minds. I joined a local forum group of rock hunters a few years ago, and have developed internet relationships with some of the members. Some of us like to find the same things, some of us like to research and share info, others seem more interested in other stuff. With a forum having thousands of members, there is a lot to sort.

I have discussed how as a branch-off from the internet group, local people gathered to follow our interests at local sites to hunt rocks, to share specimens, to explore our interest and activity together. I found others who wanted to skip the formal gatherings of large groups for meet and greet/dining etc… and just wanted a couple of buddies to look for similar kinds of rocks together.
Eventually it has filtered down to just a few local folks with similar interests and none of us drive more than a couple of hours to spend time together. Usually.

I have interacted with a teacher online for several months now and have admired his curiosity, his genuine interest in people, his desire to find certain specimens for his collections, his generosity in sharing with others, etc. He contacted me over one of my rock finds and said he was coming from several hours away to hunt for the same rocks. I expressed interest in meeting him to help him find what he was looking for.

This is the background story. Here is what he taught me, and I think it is valuable. I had not thought this out for myself, being autistic I sometimes need to have things explained to me which seem obvious to others. My internal thought and idea processing is not ‘standard equipment’ but relatively unique. I digress.

As we looked for rocks we talked, and he ( a teacher by trade) talked about other forum members and how he had sought them out to learn what they knew. He traveled long distances to meet people from the group to find out about the rocks and minerals/fossils etc that interested him and that he wanted for his collection. I suspect he was collecting people as well.
It dawned on me that he was teaching me how to make friends and showed me that I could take the initiative to reach out to others to find things in common. Light on in the attic!!!
I was grateful that he explained it, for I needed to know this badly. Others may have understood it intuitively, but I needed somebody else to point it out and explain it in order to understand.

Now I know I can find others of similar interests and ideas instead of waiting for random contacts
( or for them to reach out to me as my teacher did).

This is a tool I can use to move forward. I am so glad to know this, and so grateful for the explanation.

This is just one small example showing why parents need to explain absolutely everything to their autistic child.

No detail is too small, no action to simple to be ignored without explanation.

To me and to many other autistic folk, reasons behind other people’s behavior are hidden and complex, difficult to understand, or simply unknown and unseen… motivation is the most difficult thing for me to understand in any interaction with others.

Why does he ask that? what does she want me to do? What reaction is expected? What does that comment mean? Is it sarcastic, encouraging, meant to hurt, meant to be funny?
Help comes with detailed explanation. Knowing how to ask others to join me and ask them to teach me about what interests them will help me grow ideas, intellect, insights, and if I am lucky create a few new friendships as I go. How did I miss this??? ( autism)

What if somebody had explained this to me as a struggling teen 55 years ago (when the photo above was taken of me) ???

Thank you, my teacher, I am truly grateful for the insight!

Get READY now

What if there is an emergency?

Recent events have been on my mind lately. A good friend spent hours watching firefighters battle a huge blaze in an apartment complex across the street. An area the size of a city block was lost. All the people who lived there lost their homes and belongings. Certain surrounding areas had to be evacuated as well. Others were put on “standby” alerts.

People in the state where I live lost everything when an old dam burst and allowed water from the recreational lake it had created to inundate the subdivision and part of the large sized city just downstream from that location.
People who lived there lost their homes and belongings. Somebody I knew there was without utilities, including water and sewer for several days as the area began to recover.

There are chemical spills, forest and urban fires, floods, earthquakes, violent damaging storms, civil unrest, and many other reasons why people must suddenly leave their homes , evacuate certain areas, and try to begin new lives in places that are strange to them.

Do you have plans for such an emergency? Now is the best time to think about it, as terrifying as it might be.
Emergencies do happen in every part of the world, every day.

Our autistic inflexibility can be an extra problem for us in emergency situations. We can be so shocked by rapidly threatening events that we become ‘frozen’ and unable to act for ourselves. We may not be able to do the things that need to be done quickly in such an emergency if we have not planned and thought about what we would do and made certain things ready “just in case”.

The flood issue struck close to home. We live in an area close to one of the Great Lakes in the USA, and there is a river through the heart of town, much beloved, tamed by no less than 4 dams in regions above town and in the middle of town as well. If one of those dams broke, would/could the others follow? The government agency that inspects the dams says they are reaching the end of their span of usefulness and they are not completely stable. I have been thinking about what we would do here, if there was a flood situation and we had to be evacuated.
We have important papers we would need to take with us. We do not have a trailer or access to one to bring large items with us. By the time we got our files, our pets, our clothing and medications, food and water for 3 days, sleeping bags, etc. we still would have to find a safe place to go, figure out a safe route to get there, and figure out how to proceed to live our lives from there.
I am making a check list and gathering things we might need into one area of our home, and packing up what I can ahead of time.

Something that might help you think about emergency preparedness is the usa government website ready.gov What possible threats are most likely to cause emergency evacuations near you?

I began to prepare for emergencies even before I knew of my autism. I lived in an earthquake prone area in the south of my home state and there had been a lot of publicity about “the big one” – a huge earthquake being possible on a nearby extended-area fault zone which had been inactive for well over a hundred years. I had small children and the stories of possible damage worried me. So I began preparations.

I packed an emergency bag for each family member, one complete change of clothing plus a couple extra socks and underwear, and shoes. Shoes are so important in case of night time evacuations and possibilities of having to walk in areas with broken glass, damaged buildings, down trees, etc..

I remembered to pack clothing that could be used as night clothes in a public sleeping situation. I packed a towel, washcloth, toothbrush, toothpaste, etc in the emergency bags (these were backpacks). I packed a comfort toy and non perishable snacks in the kids’ bags.

I packed a bag for the pets with collars/ harnesses/ leads, dishes, food enough for 3 days. I packed the contact number for the vet and included letters for “permission for emergency treatment” as well as all health records for the critters.

I packed food and water for 3 days for each family member as well.
I made sure we had copies of our birth certificates, our social security numbers, emergency phone numbers (family, friends, etc we would need to contact in case of emergencies , doctors numbers, health records, records of all the places we paid our household bills, so we could terminate service, ask for extensions or help restoring services, tax records, etc.
Insurance cards and copies of plans plus contact numbers went into the bags, as well as all the contact numbers and account numbers for the bank, credit cards, etc etc.
I got extra prescription drugs for family members and put those in the bags too. I had a little first aid kit and a small radio that ran on batteries, flashlights and extra batteries. I had sleeping bags and blankets and pillows stacked and ready to pick up and put in the car.

I began to be very conscious about the level of gas in my car’s tank.
If we had to evacuate I had seen the television and news articles showing long lines with waits for gas and people’s cars abandoned by the side of the road due to running out of fuel.

Especially if you live in areas that are prone to ‘weather events’ or known hazards, please consider giving yourself a huge advantage by insuring you are ready ahead of time as well as you can be.
Emergencies can happen at any time. They happen to everybody.
Being older and autistic does not mean we can not give ourselves the accommodation of being ready to react and save precious time and perhaps our own and /or our loved ones’ lives.
I do not dwell on scary thoughts surrounding these “what if” scenarios, but I have peace of mind knowing I will know what to do if the time ever comes that I am called on to act and react quickly for safety and well being of my household.
Do you need an emergency plan? How will you respond?

Who am I ???

Finding your authentic self after diagnosis

There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.

I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).

I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

What happened to all the autistic children?

They grew up to be adults!

Awareness is rising about autism and most people have heard of autism. Autism is primarily thought of as a children’s issue in the eye of the general public. What happens when these kids grow up? What happened to all the children who grew up before autism was commonly diagnosed in kids? They are now autistic adults!
If the CDC is right, there are well over 4 million autistic adults in the United States alone, and most of us have never suspected we are autistic.

How do we find autistic adults today?

Autistic people are more likely to be suicidal.

Autistic people are more likely to be victims of crime.

Autistic people have a higher rate of depression and anxiety.

Autistic people account for about 10 percent of admissions for treatment in rehab centers for alcohol and drugs ( compared to 1 percent of the general population admitted) This is truly stunning when you understand that autism is believed to affect 2.2 percent of the general population.

Autism may account for up to 10 percent or more of the homeless population.

Autism may be involved in those admitted to jails and prisons although very little or no research has been done specifically on autism. Intellectual disability in general has been studied as a factor in prison populations and shown to be present in higher than normal levels among the general population.

Autistic people tend to have poorer health and to die younger. Life expectancy in some studies is as low as 38 years. Other studies say around 58.

From these statements one can see how knowledge of autism would be particularly useful to certain groups. Doctors and health care workers of all types, law enforcement professionals, social workers, can you name others?

Diagnosis of autism as an adult can change lives. Self understanding is one of the keys to finding a new life amid common social struggles. Autistic people seem to have more than our share from a statistical reporting level at the very least. I can not tell you the huge difference my understanding of my own late diagnosis has made in my mundane and every day life. I can only imagine how useful such self knowledge can be to those struggling with such difficult issues in their lives, and how useful it would be to know and understand about how autism may have been involved in so many lives of pain and hardship.
I am reading of mandatory screening for autism in new hospital admissions for suicidal behaviors. I am reading of mandatory screening in clinical situations for care of those struggling with addictions.
I am grateful that professionals in some places are using today’s understanding of autism to help recognize and diagnose autistic adults. So much more needs to be done. Please help spread the word.

Autism executive function

Getting things done

Disorganized, lazy, procrastinator, negligent, sloppy, messy, always late,
late bills, late for appointments, late for work, cluttered, dirty, overwhelmed!

This is the life of many autistic adults. Although we love details, many of us need help with every day life due to struggles with executive function. Executive function is the part of us which is used to organize, start a project and follow it to completion, to do basic household chores in a regular and frequent manner, to follow up on paperwork , balancing a check book, paying bills, keeping files so that we can find important records when we need them ( or in case we need them). Executive function is getting work done in an orderly way and keeping up with due dates, project deadlines, keeping within guidelines or following directions.

There are many things that can contribute to our struggles with executive function. Like everything in a spectrum, there are some very vague areas of functioning from deep struggles with everything or not needing much help if any. Struggles with executive function are not diagnostic of autism, but many of us (autistic folk) need help sorting it out one one level or another.

Proprioceptive difficulties can add to our burdens… how do we know and recognize when to do any specific job? How far should I go with cleaning? Quick wipe down? Deep clean? How often?

The ability to even begin a project can be held back by several different issues. We could have Demand avoidance, performance anxiety, learned helplessness, troubles with memory either or, or both short or long term. There may be need to see an occupational therapist to help devise strategies that are useful to assist functioning levels. Psychologists or other therapists may be able to help with the anxiety, helplessness, and avoidant behaviors.

Some of us are great at finding details, but not at sorting them or ranking them in a way that can be useful. We might need help deciding which details are important and which are of less importance, and ranking them as priorities.

Struggles vary and each of us will need help with different things.
I might know I should do the dishes and clean the bathroom, vacuum, do laundry, change the sheets, etc. but how do I know when to do these things, and have I learned how? I needed to learn each of these tasks individually and was fortunate to have been taught much of it as a child. I had to get books on household administration and read them, advice on auto care, information on lawn care, household maintainence and how frequently to have things like the furnace serviced, etc. There are lots of informational resources on line! We can ask others to teach us or help us sort out the details of almost anything. We do not have to struggle along and make do, there are usually resources available.

With autism, we can break each individual job down to its smallest components.
Naming Tools needed for each job, and supplies needed. ( how do we choose them?) Then we learn how to go about doing each task. How to use the washing machine( what kinds of things go in the wash water, cleaners, brighteners, scent, softeners?) and hang clothing to dry, our use the dryer ( do I use dryer sheets?) How do we treat stubborn stains and spots? How do we fold the clothing and do we have a single certain place to put it every time ? It is more complicated than it may seem. If we missed those lessons as children, we need to find a way to learn them today. The same for every single thing we do to take care of ourselves and our possessions, and our households.

A project such as “housecleaning” can overwhelm us until we learn to break it down into small steps.. instead of “cleaning the kitchen” as a job, we can break it down to small tasks. Collect all the trash and take the garbage out. Wash the dishes. Put away food/spices and utensils. Do we have one specific place where each item belongs? clean the counters and cabinets, wash the floor. We learn individual things like cleaning the oven and cleaning the fridge as separate tasks and make sure they go on our list of things we don’t need to do daily, but less frequently. we can use lists, schedules, electronic devices, calendars, reminders in the form of post it notes or a cell phone that might call you back and remind you.

The same goes for individual paperwork tasks… do we know where we keep supplies, what supplies do we need? Where will we work (desk, kitchen table, ???) Do we have adequate light? What dates do we need to be aware of? Bills and other deadlines can not be ignored, but must be planned for and this is something that we can learn. Many management techniques are available, from credit, debit, electronic banking, using an accountant, etc. If you don’t feel you can do it yourself, please ask for help. We can get easily overwhelmed or frustrated, and letting these things go can cause such major problems.

If you are not able to sort executive function issues on your own, there is no shame in reaching out to get help from others or to rely on paying others to make sure some of this stuff gets done. I must point out that I do not know what resources are available in other countries, I am speaking from the perspcective of a person living in the USA in a small and relatively poor and rural community.

I suspect some places have nothing at all to help. In this case, talking to others and asking how they handle specific issues may get some guidance or insight.

Who do we go to for help? Talking to a friend, family member, therapist, social service agency, your doctor or minister, and explaining your struggles can get suggestions, help you find ideas the might work for you, and get referral to others who can help if they can not. Many areas have senior citizens agencies set up to help seniors with daily living struggles, senior centers usually have information services. government agencies, on city, county, state levels may have programs to help seniors with issues of daily living, including cleaning, keeping appointments, food plans/ meals or food programs, etc. If you need help, there is no shame in asking for it.