Autism Awareness

April is autism awareness month!

But every day is autism awareness for some of us. Many are acutely aware of our struggles daily.

I spend most of my time trying to either gain/learn information or to share information about autism, especially in older adults. I repeat my encouragement to share any information on these pages, to reprint or post any of my comments freely. I don’t claim copyright, use them in any way you can to promote awareness and understanding of autism. Just don’t claim my words as your own.
Please share.

Every day should be autism awareness day.

Over 5 million autistic adults in the USA may not be aware of their diagnosis because nobody “was” aware of autism during the times we grew up.



Autism Special Interests

What are the things that interest you most?

Let me say right away that the term “special interest” annoys me. It feels like condescension, patronizing little pats on the head , and maybe even a bit of ridicule. “aren’t we special”???

Everybody has hobbies and interests. Autistic people seem to have intense experiences of learning surrounding our strongest interests. It can be very exciting, mentally stimulating, to think about and to learn about our favorite subjects in depth.

I want to try to define the intense-to-obsessive interests that most autistic people seem to have in one form or another.
Specific intense interests can ebb and flow, being at times more diverting, obsessive, narrow and specific than others, or suddenly disappearing as another interest takes hold of the mind.
This is probably true of almost all people growing up. This is probably true of most adults today as well.

Things differ in autism regarding interests; for many of us the depth of interest, the intensity of focus and the amount of energy and work that goes into learning about our subject or subjects is proportionately much greater and unusually, (as compared to neurotypical interest levels), autistic interests are much deeper in practice.

Interests will range from social issues, to specific people, to any of the sciences, even very specific specialties surrounding one small area of science.
Interests can be physical, such as athletic participation and achievement, musical, creative (making or creating anything from textiles, to woodwork, ceramics, automotive, industrial processes or skills for example), Interests can be farming, gardening, training animals or care-taking, psychology,electricity, or any other thing that catches and feeds our curiosity and interest.
Anything in the world can be of intense interest.

This trait can be the basis of a career for those who develop marketable skills using their passionate interest in computers, culinary arts, child development, nuclear science as applied to certain branches of medicine, etc.. an interest in cartoons can lead to a career as an artist or technician, in computer gaming to research and development of new computer technologies, etc.
Passionate interest in something like horses or fire trucks can lead eventually, if fed and stimulated, to veterinary school, becoming a specialist in selling horse realty properties,or a host of other animal related careers. Career paths with the fire truck lover could lead to becoming a mechanic or a manufacturer of electric sirens and fire alarms, for example.
Look beyond the current specific interest in a child and see if you can help lead related interests into career options.
If you are an autistic adult looking for interesting work, how can you turn your interests into a related job?
Ask others to help you look at your interests with career or profit making in mind, how can you break down the skills you apply to your interest to a way to make money?

I read over and over about parents who only allowed their child to follow their interests as a reward for performing other functions (clean your room, then you can use the computer for an hour to look up your special interest). If you don’t reach your parent’s goals, you are helpless to have satisfaction and stimulation, or enjoyment. You are punished using the very thing you love for not being able to do the things others seem to do so easily. What misery and feelings of despair and futility this causes. (ask me how I know)

I have met many people who try to shut down the interest because they want their child to be interested in something else. (he can’t bring his rock collection into the house because it is dirty and nasty, why can’t he join little league baseball instead ? ( actual example) What is wrong with this?

Instead of using the intense interest and excitement of discovery surrounding the subject,as a way to bring dimension, a sense of accomplishment and satisfaction the autistic person, sometimes even as an adult, is instead shut down, criticized and degraded, or mocked… other minds thinking the specific interest shown is a waste of time or not useful.

If the interest is unhealthy, (and some interests can certainly be unhealthy), I can understand this thinking. When the interest is not socially or personally destructive, (if it satisfies curiosity, creativity, feeds intellect or gives insights, and stimulates thought, perceptions, promotes understanding, or otherwise is constructive in nature), it can be a portal to other things and used to help relate to others in so many ways.

Interests can be a passport to a career, to social interaction with others with whom we share interests, to satisfaction, healthy distraction and focus on good experiences and a way to escape pressures of a sometimes very difficult world ( how wonderful to be able to understand all about something we enjoy).

There are many explanations about “special interests” written by specialists and other autistic people. Some speculate that deep interests are a sort of self stimulation (stimming). I have said that learning, for me, is a form of recreation. Some psychologists see the intensity of interests as escapism, and have advocated restricting interests as a way of forcing autistic people to interact socially instead. This strikes me as another form of the “force them into the mold of being “normal”” school.

Were you actively discouraged from your strong interests in your childhood?


What might have happened if your interests were supported, gently directed, and your curiosity fed and stimulated instead?

As an old woman now, I can only speculate. I think things may have turned out very differently for me.
I am glad I live today knowing about my autism and I take great joy in learning new things about my favorite subjects.

I love interacting with others who share my interests, and exploring new interests without worrying about others in my household trying to divert me, chastise me, or keep me from learning and thinking about the subjects that give me such passionate curiosity and enjoyment and satisfaction of finding out more about them.





Autism Intrusive thoughts

Re-living trauma, replays of old experiences

All my life I have had a “running dialogue” in my head. I hear every thought, and I am always thinking. Since I function best using words, this is understandable to me.

I have also had continual “loops” of old bad experiences shove themselves into my conscious thoughts regularly. I “replay” the upset, the angst, the pain, the fear over and over.
I came to the conclusion after my diagnosis, that this is my brain looking for answers about what happened, and seeking answers about how to avoid repeating what happened.

It is my understanding through discussion with others on the online forum groups that I attend, that this is a common experience.
Re-living trauma, pain, angst, anger, and upset is evidently a side effect of poor processing and misunderstanding. It is as if our minds still try to sort the event out and to come up with a “better ending” or new understanding.
This might be a sort of perpetual attempt to process something that is not comprehensible.
I have ( and had ) a lot of “loops” replaying old pains and fears.

These things happened before I knew about my autism and before I understood my very slow to non-existing processing of “real life” interactions.

There were perpetual misunderstandings, I was forever reacting in ways that angered others due to my own misunderstandings (and eventually to my angry frustration and almost instant defensiveness whenever anyone approached me).

I was ready to be attacked, assumed that I would be attacked and constantly vigilant to escape through the mal-adapted means I had developed as I grew up.

In interacting with other autistic people in forums, asking questions, etc, I have learned that this is a common and distressing side effect of our autism. All those replays pushing for attention, replaying the hurts and the angers and fears over and over. It became a sort of habit to re-live those experiences and to repeatedly come to the conclusion that others were hostile and out to get me.
Traumatic confirmation bias, and a self fulfilling cycle, however unsatisfactory. I was stuck on “hold” continually re-living old pains and traumas.

That was before I knew about being autistic.

Knowing my autism diagnosis gave me new perspective on these old hurts, and these constant reminders of my inability to defend myself, my complete incompetence to deal with people in almost any upset situation, my lack of ability to understand what had happened, and why.

I was not able then to see how my autism (and theirs, too) sometimes got in the way of communication, resulting in misunderstandings, angry flare ups and worse.

After learning of my autism, I began to allow those memories “head space” instead of trying to avoid them. ( something I was never really able to do).

As I faced the memories one by one, I was able to take each apart in little bits and to see how autism had added confusion, anger, misunderstanding, mis-comunication, hurt feelings and so much more to the original “triggering incident”.

Once I was able to figure out “what happened” I have been able to set that particular memory aside.

If I am sure I can not fix it, can not change the outcome, can not do a thing about it all these years later, then I deliberately file that memory into a metaphoric file
(remember I think in words, not pictures) that I created in my mind.

You may find it helpful to actually picture a file with a label on it and the memory as a paper, or other item and actually visualize this part, if that is the way your mind works.

I take my painful memory, which I now have new understanding of, and I file it in that metaphoric file, which I call “finished business”.

If that particular memory presents itself in my mind again, I remind myself that it is “finished business” and immediately send it back to that file.

Over the course of about three years since I have been practicing this method, I am finding more peace and having far fewer intrusive bad memories. I allow the memory “head space” until I have examined it with my new understanding, if I can not change anything now, but I know and understand more about “how or why it happened”, I can safely ask it to go to the “finished business” file and to stay there.

In many online conversations with others on these self help, self support ” by autistics and for autistics” forums, I have explained how I do this, and I have got good feedback from others about its usefulness as a tool to help find peace and self understanding.

Diagnosis is the key to self understanding.

I realized recently that I might not have mentioned this method for dealing with old pains on this blog in the past and thought it might be something useful for others with painful and distressing memories to try.

Hoping you too will find this helpful.

Today is the first day of spring 2021. May you continue to grow and bloom!

New beginnings and new and better life, growth, and renewal are possible through diagnosis.



Evolution of the autism blog

My own personal blog is changing as I change

I woke up with thoughts and insights about how much my life has changed as my understanding of autism has changed and grown.
I have grown too, and it seems to me that had I known of my autism years ago I might have gained much benefit. Today’s understanding of autism has been most helpful, but of course a diagnosis until very recently would not have had the same sort of information to help me make the most of my world.

I have gone from simple wonder and gratitude and curiosity. I began sharing what I was learning as I went along, actively seeking new ways to try to reach out to individuals and groups to explain and inform about adult autism.
I began to try to show how diagnosis can benefit older adults especially, even those near the end of life, like me.

I continue to look for new information, scanning published reports and following blogs.

I participate in several adult autism support groups, and one for mixed age autistic folks as well.

I am learning that most published information from bloggers and those sorts of popup magazine like pages which have autism information meant as a 2 minute read are rarely accurate when they quote recent studies.

I am learning that blog writers often “get it wrong” too, when they use studies as reference in comments. One recent blogger claimed that studies proved people did not want to live in the same neighborhood as autistic folks, but when I looked up the study, that was a misinterpretation of what the study results claimed.

I encourage everybody to do their own research for better understanding. Don’t take somebody else’s word for it, go to the source whenever possible and see for yourself if what you are looking at agrees with what somebody else claims it does.

One huge difficulty is that so little research is being done on older autistic adults. There is very little information to glean from if we use studies as our source.
Many studies have confirmation bias, and are poorly designed, or are statistically invalid because of the very few numbers of autistic people involved in forming the group to study.
One “wild card” would skew everything on the study and all information would be suspect.
There are lots of preliminary investigations regarding autism in mice. I tend to be very skeptical of these studies because of the huge differences between mice and ( ahem) men.
If they can breed autistic mice, doesn’t that confirm that autism is indeed genetic??? (rhetorical sideline)
I have questions about the idea of autism being created in mice to begin with. Those things may be of benefit in 2055 or 2099, or they may be discarded, but anything gained is definitely not useful to me as an old lady who is fairly certain I have far fewer years of life ahead of me. Your thoughts and ideas may differ, and that is OK too. Autism in mice does not seem to apply to my own life and it seems unlikely that it will. I do not follow these studies because they will not apply to anything useful in my generation.

I am gaining confidence in my abilities, understanding my disabilities (some might say differences or weaknesses or “struggles” to stay within the politically correct center).


Knowing my strengths and weaknesses has helped me fashion a better life. I am able to make informed choices, understanding better how much energy, patience, determination, and focus it might take to embark on anything new or different. I am much more self forgiving as I recognize my problems with communication and socialization are due to my neurology and my hidden inability to understand most anything that happens in “real time”. I can allow myself to set my own boundaries and choose my own activities without feeling guilty because I do not do what “everybody else” does.

I am scheduled to do an interview for a newspaper about raising awareness of older autistic adults and the need for diagnosis. (April is autism awareness month)
I am worried about the interview, which will be face to face, and I am preparing an information sheet with facts to give the reporter, because I do not trust that I will be able to present information well in person. Anxiety will be very high and I know I do not make a good impression in person because of my awkward presentation, my slowness in understanding and my tendency to stampede in conversation when I am anxious. Years of conversational failures with strangers is not a basis to proceed from with confidence.
That is OK. If I can deliver the message that my life and my own self awareness was a far worse struggle until I knew about my autism and began to understand my past and my neurology, then I have done what I aim to do.

I am spending much more time on support groups interacting with other older adults, trying to encourage and share information that might be helpful to them as they look for diagnosis or come home with that diagnosis in hand and wonder “what is next?”
I think I am fairly well informed about autism and that I have a basic understanding of how it works in different people depending on the development or lack thereof in each of our nervous systems.
Now my work needs to focus on getting the word out.
We need more professionals who understand autism, who can diagnose autism, who can provide support in counseling and guidance in helping autistic adults to ease their struggles. This goes back to making people aware that adult autism exists, that autistic adults with hidden diagnoses are more likely to be suicidal, homeless, jobless, be low income, need health care, and statistically more likely to need help with struggles of substance abuse, mental illness, or to need assistance to access help for any of these challenges.

Please feel free to share the “you might be autistic” information at the top of the page. copy, paste, print, give to others to promote awareness of autism in adults.
Please share any information, comments, insights or words here with my permission as long as you do not use them as your own.
Please continue to help raising awareness of the great need for the growing populations of the elderly which will peak at the end of this century.
Send a note to your own local newspaper or magazines, professional newsletters, groups and pages.

There will be so much need for care and insights of all older people.
Knowing of our own autism diagnosis may help so many to have fewer struggles and to live better as we age.
Knowing autistic kids do grow up to be adults will help autistic children today have better lives as they mature.

Please join me in finding ways to bring attention to this need. There are over 5 million adults with autism over the age of 21 in the USA today. CDC and Census information statistics provided this information. ( you can do the math for yourself)

How many of us know we are autistic? I imagine that less than 1/4 of us know about our autism. You won’t find that statistic anywhere. People born before 1980 were very unlikely to be diagnosed with autism, since there was no standard diagnostic criteria at the time. Nobody began to look closely at children with autism until the 1990s.
Today’s understanding of autism is vastly different than it was in the 1990s.
When were you born?

How do I do this?

“This” is almost any thing in life you wish to accomplish.

Executive function and self-regulation skills are the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.
(definition is quoted from developing child Harvard. edu. website )


The forums I attend are full of questions asking how to do things.

How do I stop masking?

How do I get organized?

How do I gain independence?

How do I get a job?

How do I ask somebody to go out with me?

How do I find friends?

How do I redecorate this room?

How do I assemble a wardrobe?

I think I recognize something in common for all of these questions.
In every case, the project in question is complex, needing development of separate skills or taking separate steps, but the person looking at it can not figure out how to proceed.

Executive function insight is what is missing.

How do we know what we need to know, when we don’t know it? I have had miserable experiences attempting numerous projects without having a clue as to what was needed or how to proceed.
My entire childhood and you adulthood was scattered with embarrassment, shame, guilt, and frustration because I could not figure out how to do things that others seemed to know how to do naturally, and I did not have the support of others to help me understand.
I learned I was inept at many things, and it has been such a relief to understand I was not just plain stupid, but that my neurology was working against me in many cases, and that I should have had information and instruction before proceeding. In effect, most of my life has been spent learning “what not to do”.

This is another instance where my diagnosis and my understanding of my world through knowing about my own autism has been such a relief!

I had to learn how to break anything I attempted down into tiny steps to be taken.


I had to develop the ability to decide which steps came first and how to learn the skills needed for even the smallest project.

As I got older, (middle school, when I could finally access the local library on my own- back in the days before computers) I was able to consult books to get information about how to do so many things, books with photos, line drawings, maps, charts and other useful tools which helped my understanding.
I find I still learn best today by taking step by step printed and illustrated information through reading information, and then putting those steps together to understand how to proceed.

My inability to understand any unknown or never encountered project has remained the same. I will always need to understand things completely before I feel brave enough to attempt doing what is asked of me or is needed.

There are so many “how to” references for most life skills, both written and video/audio, and the internet is a wonderful tool for these things.
But many autistics are not readers and many do not learn well from videos, podcasts or lectures.
If you are somebody who needs a coach and must
“do it yourself” to know and understand, there is absolutely no shame in asking for help, taking lessons, finding a coach or a mentor to help, etc.

If a person wants to learn new skills of any sort, that information is available. We may need to ask for help to find the information we need.

We first must reach out and ask “how do I do this?”
If you know somebody who is autistic, this question is not just random thinking out loud, it is a question which needs a definite and specific answer with as much detail as you can provide.

Parents, spouses, caretakers, are you listening?



Autism for professionals

Addressing autism in clinical and service situations.


Having lived a long life I have had many encounters with medical, clinical, hospital, therapy, and other situations where I have been given treatment of one sort or another. There have been some really good experiences, but also some very bad ones.

Many diagnosed autistic adults now carry Autism ID or explanations in their wallets to help interactions with first responders. Many have identifying medic alert cards, bracelets, tags, etc.
There is even a trend to carry “medical passports” explaining autism and special needs surrounding the individual. I like that idea. I carry autism ID and will be working on creating an explanatory passport which I will ask to be included in my files ( or for my family to do that if I am not able at any point) I can do that now because I understand I am autistic.

But many of us are still unidentified as autistic through lack of diagnosis, etc. We are likely the “difficult” ones. I am sure I have been difficult in some of these situations, but it was never my intent.

I have realized that my most positive experiences in these situations had some common elements.


The treating personnel identified themselves to me and addressed me when first approaching me. They told me what they were there for, what they would be doing, and answered questions about how, why, etc before they proceeded with exams, treatment, etc. I was able to cooperate with full understanding from then on.

Statement of intent and then full explanation with discussion if necessary may not always be practical if it is an emergency situation where life saving techniques are urgently needed, but even there, as treatment is being given, it can be explained, with the professional first stating their identity and explaining as they work.
In every bad experience I have ever had, people approached me and put hands on me directly without telling me who they were, what they were doing or about to do, and without explaining why, what would happen next, etc.
Example: I went through a series of doctors for treatment of a broken arm and subsequent therapy, and not one of them explained a thing, neither support staff or the doctors themselves.
Not one gave me the opportunity to ask questions at any point, certainly not before beginning to examine me or treat me.
The diagnosing doctor and the treating orthopedic specialist evidently hated each other and had an ongoing feud. I had no idea, and every thing I told the orthopedic doctor about what the diagnosing doctor had said was misinterpreted possibly deliberately, ( although my autistic understanding and word for word quotes did not actually convey what I understood later as the diagnosing doctor’s intent) with fury.
I was not treated the same as the orthopedic doctor treated most of his patients, and I did not understand this until I spent a lot of time thinking about this 6 months treatment and its progress long after it was over, and I began to pick apart the experience from my new understanding of my autism.

There was not explanation of anything when my cast was removed, what to expect, how I could help it, nothing. I drove home in pain trying to use that recently freed arm fully in spasm and violent cramps with a stick shift car through unknown city streets with two small (autistic although I did not know it then) children in the car. Maximum stress on several levels which could have been avoided if I had known what would happen and asked somebody else to drive us home.

I was not prepared for subsequent physical therapy, nothing was explained, my arm was in intense pain and I was defensive. I was taken down a long shadowy corridor full of sounds into a closed off room where I was made to wait. Then finally somebody came in and grasped my shoulder and elbow and began to twist it. She did not introduce herself or explain what she would do. Perhaps I should have understood but I had a full blown panic attack , asking what are you doing. She said I am going to assess you, without further explanation and tried to grab me again. She was angry, I was being difficult. I asked again, what are you doing, she said the same thing, only louder, and I pulled away.
She went to get her boss and he addressed me with impatience and aggravation. I refused to see the same therapist and he brought somebody in who very quietly explained what was going to happen, why, and how, and who asked permission before they touched me. It was a series of events that had not needed to happen. I had been confused and frustrated from the beginning, trying to understand what was going to happen, how and why at every turn, with not a single explanation offered. I was angry, fearful, defensive, and frustrated. It did not have to be that way.

Here is a simple formula which would do no harm for any professional addressing any patient or client.
Introduce yourself.
Explain what you intend to do, explain how you will do it and why you will do it.
Invite questions for further explanation if needed.
With autistic folks you might have to draw a sketch or give somebody a brochure or pamphlet that explains complicated procedures. Not all of us understand well from videos, but some of us will appreciate demonstrations visually as the best way to explain.
Then when it is understood what will happen and why, proceed by asking permission to touch the subject to allow a bit of time to prepare for that interaction.
I can’t imagine how this would be undesirable under any circumstance except in cases of true emergency where seconds count.
Introduce yourself, state intent, then explain before proceeding.

Repeating the same words only louder when asked a question or for explanation only pushes panic and fear, and builds resistance due to anxiety in an already confusing, frustrating, fear inducing situation, often while we are in pain.

I think about the stress and distress in several medical situations where this would have saved everybody a lot of headaches and problems.

Introduce yourself, state intent, explain and then proceed.

I carry emotional trauma with me from some of these experiences. Deliberate cruelty and angry, vindictive and resentful behavior on the part of staff, (punishment meted out when the subject is confused, bewildered, and in pain) is unacceptable, but I have been treated that way on several occasions without my understanding why.

I have managed to sort a few of these experiences, but others are still unexplained in my position as subject/victim and my autistic understanding. ( or lack thereof).

Everybody is human, medical folks and support staff are pushed hard and spend long hours in service to others, and can have bad days just like anybody else.

I do understand that, but I hope that others can avoid distress and painful experiences through some simple steps that might make things easier for those of us whose understanding may not be complete.
What is obvious to some who are familiar with procedures may be bewildering and frightening to others. Thanks for your patience and compassion in looking beyond appearances to understand.

The cost of misdiagnosis

and missed diagnosis regarding Autism.

I have been searching and researching for information and studies, statistics, etc regarding the missed diagnosis of autism and its misdiagnosis as “something else”.

Interesting to me is that most times when I searched, I found many discussions, studies, conversations and articles about children being misdiagnosed with autism when they were not.

It seemed to me as though this is a common question among parents with newly diagnosed children. Maybe difficulty accepting diagnosis, maybe wishful thinking/ denial? I was amazed to find page after page of discussion about how this could happen.

I found very little regarding misdiagnosis of adults with something else when instead they should have been diagnosed as autistic. I have commented many times that there is a vast vacuum/ echoing empty space on the internet in place of articles about adult autism, finding older adults with undiagnosed autism, etc.

I participate in multiple on line forums especially for autistic adults. One common topic is how so many of us have garnered so many diagnoses of all sorts before we knew were autistic.
So often a forum member would explain that their bipolar, their schizophrenia, ADHD, Depression, anxiety, or their other diagnoses were atypical and did not fall into the usual categories of definition. Many have been treated for years with partial to limited success. Many have given up trying to get help because the continual lack of success is so discouraging.

Discovering that they are autistic and understanding their diagnosis had freed many from series of unsuccessful treatment attempts, from shock therapy, over medication, institutionalization or hospitalization for intermittent periods, and on and on. Traditional analysis and therapy are often unsuccessful. I went to several other therapists before I finally found one I could communicate with, who understood me, and was able to help. I was treated with medication for years for depression and even more so for anxiety.
Now that I know I am autistic I have understanding necessary to give me a great deal of relief where traditional treatments had failed.

What if all of us had got proper autism diagnoses earlier? How much emotional pain, how much suffering, how much damage due to side effects of powerful anti-psychotic medications, how many social struggles such as unemployment, poverty,homelessness, suicidal behavior, emotional outbursts leading to trouble with the law, hospitalization, etc could have been prevented?

This post breaks my usual policy of not sharing documents and links to other pages because it explains everything I wanted to explain in my blog, in better words than I could explain it. Please read and think about how much we as a society have lost with our lack of understanding of autism, lack of training specialists and giving them tools to properly diagnose autism, the lack of access to diagnosis, the struggles and troubles that could be averted if we finally understood our own autism and were able to see how to make accommodations and to use self care or access tools already available in many places to help us in ways that we need. Finally needs of older undiagnosed adults is being recognized and brought to light. The voices of many have been raised in chorus and at least in some circles, we are being heard. Feeling grateful.

https://link.springer.com/article/10.1007/s00406-020-01189-w

Putting out Fires

Can I stop living life on “stampede” mode?

This has been on my mind for a long while, but I have struggled with how to present the idea so that it makes sense to others. The metaphorical idea behind the phrase “putting out fires” is supposed to give one an impression of somebody running from urgent crisis to urgent crisis without cease.

I believe the anxiety level in my life from childhood on caused me to live my life like this. I was so ill equipped to sort what was important from what was not, and so poorly understood what things in life were truly significant as opposed to what things were “just small details” with less importance.
I had nobody to explain these things, it was just “understood” by others in a way that was never clear to me for most of my life.

I learned early in my childhood to be hyper-vigilant in responding to demands and requests of others, and was very fearful to ignore or refuse these demands, commands, requests, directives, etc. regardless of who was making them. This was probably mostly due to my autism and my continual misunderstanding of the world, other people, and my place among all of it.
I was constantly fearful of displeasing any person, of doing the wrong thing, of being punished for making mistakes of any kind.

I believe I went from urgent situation to urgent situation “trying to prevent disaster” every day of my life in one way or another. Anxiety was always with me, to the point of pounding pulse, chest pains, shaking uncontrollably, losing my breath, having a huge ‘startle’ reflex, and many other anxiety responses for most of my life.

Looking back, I rarely spent time in wondering why this was so, or questioning anything about my life. I was too caught up in pleasing parents and siblings, employers, spouse, making sure my children and pets/ livestock etc were cared for, while juggling jobs and attempting to follow my intense interests surrounding animal welfare and horses in particular. I had no idea that my experience was any different from other people’s. Nobody knew!

Dysfunctional relationships with family and co workers kept me from sorting specifics, when I tried to understand why things happened certain ways, I was always told it was all my fault but I never understood how that was so.
I was perpetually bullied, intimidated, mocked, scorned, used, abused, punished, shamed, at home, at school, at church, in other social groups, and in individual interactions with others, and never understood why. I tell people I lived my life in fear, and this is so. I was afraid of everything, and afraid I would not be able to deal with any situation or make the right decision, do the right thing. Experience had proved over and over how inept, thoughtless, careless, etc I was, and every misjudged act, deed, expression, or interaction proved over and over the justification for my need to worry and to fear.

It was not until I was retired and my kids were grown and moved to homes of their own that I had enough time to do a bit of reflection and trying to sort out the “why” questions of my life.
I finally had time to do research on the internet, I finally had time to spend thinking about so many painful things from the past.

I was not able to sort it out on my own. I had to learn more about autism once I suspected it could be present in my life. Finding out about my autism gave me the tools and the understanding to see things in a different perspective and to understand what had happened all those years when I did not know I was autistic ( and neither did anybody else).

I was treated for anxiety and depression most of my adult life. Suicidal attempts and suicidal thinking mostly left me after I learned healthier and more self assertive behavior through counseling, but I still did not have the perspective I needed to understand how I affected others in my autistic ways. I spent all my time trying not to anger others, to do the right things to try to please them, and always falling far short of whatever was needed to keep anger and discord, punishment and bullying at bay.
I suspect that many others who never knew of their autism had similar experiences. Probably many others can’t even imagine what I am referring to here.

Autism and life experiences vary with each person’s neurology and circumstances in our lives.

I wonder how I can reach others who feel as if they are living life “putting out fires” and to help them find the tools they need to start living lives for themselves and not simply to avoid the displeasure or anger of others?

No ideas. I blog, hoping it sounds familiar and helps somebody take a step or two toward self understanding and self forgiveness. This is just one more attempt at sorting autistic experiences of the past and hoping to make enough sense to help others find themselves too.

Have you experienced the feeling of living your life simply “putting out fires”? Have you lived your life in fear?

Random Questions

Thinking about some of the issues surrounding diagnosis.






There are no answers to these questions. If you have perfect understanding, that is great, I am not looking for explanations or justifications, examples or lectures. I am not trying to anger or cause resentment or to shame or blame or otherwise cast shade or darkness on any sector, site, person, or persons, groups, etc.


So much of our understanding of autism seems to be “work in progress”.
I have been reading blogs and participating in forums and getting good input from discussions but of course there are questions in my mind. Autism needs details, asks questions to understand.

Somebody (somebodies, it is a popular concept, this one) said that autism needs to be taken out of the DSM as a psychological condition, because it is developmental and neurological.
This raises one question. Autism is diagnosed almost solely through behavioral clues, through our struggles and our attempts to adapt and to overcome the neurology we are given.
We do have struggles and they are not “normal” in that only 2.5 percent of us ( according to the CDC) of the total population have this neurology. It is rare and unusual, Autism is not the “average” experience of the general population of humans.
There is no neurological or developmental standard test, nor is there any physical exam, blood test, brain scan, genetic DNA tests that confirms “yes, you are autistic”. So how would that work if we “de-pathologized” Autism? Our struggles would still remain, our adaptations would still be needed, as would support and understanding…. I don’t see how wiping out “autism” as a pathology in the DSM would change anything. It is as if by denying our struggles, we deny our own existence or our disabilities. Yet there are many demands for special care and accommodations. Have our cake and eat it too? It simply does not compute in my mind. Until science can come up with accurate and complete diagnosis through testing of some sort ( blood, dna, forms with questions answered only specific ways) I do not see how we can remove Autism and attempts to define it from the DSM. Where would we go for diagnosis? If we were not diagnosed, would we be able to get the help so many autistic people need? All these are rhetorical questions. None of the thinking going on in my head regarding the declaration that Autism needs to be de-pathologized makes any sense as alternatives. Unreasonable expectations on some hopeful people’s parts maybe. Still thinking, no answers.

Is there a “right” way to be autistic? Do I have to meet others’ expectations even in the ‘way’ I am autistic?

Do I have to use the right words, think the right thoughts, behave in certain ways or march in lock step with others, rejecting all you don’t agree with until I am autistic enough in your (or anybody else’s, your groups, your family, your clinic, your forum, your institute, your research results, your organizations definitions or explanations,) your legalistic application of which words or phrases are “correct” to describe autism before I am autistic enough, before I am considered autistic at all, before I am autistic enough, before I am worthy to be heard or seen, before I and my thoughts and behavior meet your definition of how I “should be”???
I am not here to meet your expectations except on your playground, your own page, group, forum, blog, etc. etc.

Not going to play that game then. I am going to take my autistic self and go someplace where I can learn about autism using the words and resources I choose, go to groups which might be forbidden as undesirable, wrong thinking, wrong anything, to learn if they know something I might not know, and to see if I might learn something from them regardless of “person first” language, calling autistic people “they” and “them”, naming types of functioning, describing levels of function, or doing other “unacceptable” forms of thinking, learning, or teaching about autism.

Can we afford to completely discount others attempting to help and to understand autism just because they do not use the same words or have the same ideas?

Some ideas will be unacceptable to me, and some will be scientifically proven to be incorrect, documentation is always appreciated. Speculation is not the same as concrete facts.
Today’s “facts” are not necessarily the truth, only our current understanding of it, based on faulty studies and insufficient scope or input of unreliable nature unknowingly incorporated therein.

I have said before and will say it again. I think that it is up to an individual to decide for him or herself/ themselves, which pronouns and descriptions to use, which terms make the most sense and are the most useful in the personal context as we try to sort autism in all its ranges and descriptions.

Of course we have to agree on basic vocabulary to exchange ideas, but is it really reason to reject any group, site, person, web page, forum, because they do not “do autism” in the “right way”. ???

Why not simply take what you can and use what seems right for you, and leave the rest.
That is OK. Personal opinion and ways of doing things will vary. Leave the rest for anybody else to use if they choose. Don’t waste energy trying to correct them, shut them down, shut them up, or chastise, shame, or destroy them. The more varied the input, the better the insights from many more ways of understanding. My 2 cents. Your opinions may be different.





Losing my mind

Alzheimer’s, ,dementia, Parkinsonism, “old timer’s” diseases and autism


I am running out of time. Sometimes it feels very urgent to get my goals accomplished now, before the inevitable struggles with old age catch up to a point where I am overwhelmed.
There seems to be extra urgency for me because my family has a history of dementia/ Alzheimer’s/hardening of the arteries, loss of mental ability among its women.
I did a lot of family history study when my children were small. I noticed a pattern then of suicides among young women up until age 30, and of men over 50 in one family branch. I also learned that women of that same family group were often sent to sheltered care type institutions because they were not able to be cared for at home due to mental deterioration/ loss of function.

I will be 70 this year. Most women who needed care were lost by their mid 70’s, many earlier than that. I may be lucky and avoid that seemingly genetic “thing”.

Health care is much better than in previous generations, as is knowledge of nutrition, self care, and many other contributing factors. Medications for heart and blood pressure problems, and stroke prevention and to help many other common conditons may also play a part in prevention.

I am wary though!
Each time I can’t recall a fact, each time I misplace my keys or forget why I walked into a room, I wonder if I am experiencing signs of mental deterioration.
Never mind that I have been a bit of a “scatterbrain” all my life. That seems to have taken on a new significance now I am getting older.

I understand now that my mother was autistic, and I saw that some of her diagnosis of dementia came from the way she behaved as an autistic. Many of her neurological struggles existed from childhood.
Studies have shown that in some people, Autism mimics stroke injuries in the prefrontal part of the brain. I wonder today how much of my mother’s autistic characteristics were assumed to be brain damage due to stroke. She had tremors which for years were not understood, being diagnosed differently by each specialist she saw. Some said “essential tremor”
some said “parkinson disease” Some said stroke damage… maybe the actual diagnosis is not important, the result was that she was put on strong drugs to control the parkinsons, some of which almost killed her, some of which seem to have had worse side effects than the tremors alone. I was not able to care for her at home. She was not capable of supported living housing, she ended up spending the last years of her life in a mental care/dementia unit of a nursing home.
The emotional pain, constant grief, and worry was continual. I carry tremendous guilt and feelings of failure over my mother’s situation.

I am fearful as well.
I worry I will end up in an institution like my mother.

I worry about being a burden to those I love. I think about what I can do now to try to avoid those things. Self care has never been more important. A long life of bad habits has slowly been changed to healthier behavior. I don’t have any idea if it will do any good, but doing healthier things will at least not harm me.

Does your family have a pattern of health issues ? Do most family members die of heart attack, stroke, diabetes, cancer, or other health issues? Are you looking into what things you can do right now to help yourself live a healthier life with better chances of staying independent or needing less care?

I urge you to look into ways you can change your health now, for a better future as you age.
You will be buying time with those you love, helping yourself be independent as you age, and improving your health and well being if you make self care part of your plans for the future, no matter how much time you might have left. ( we never know, do we, in spite of clues from the past?)

Make sure right now your loved ones know what you would like in case of sudden need for care, and make sure that those you care about are cherished, enjoyed, and loved for whatever time we have left, and what ever the future brings.