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Hidden Autism?

find clues here: YOU MIGHT BE AUTISTIC IF :

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

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

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

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

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

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

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

You might be dyslexic, hyperlexic, or be unusually talkative or withdrawn.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

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

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

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

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

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

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

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

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

You hate surprises (good or bad)

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

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

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

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

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

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

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

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





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.


Autistic voice

speech. speaking, vocal expression as autistic features



One of the things that the Dr ( psychologist autism specialist) who gave me my diagnosis talked about when he was summarizing and discussing my autism was that my manner of speech was a significant clue to his diagnosis. I have been spending a bit of time learning about autism and speech. These are more clues to use if you are still wondering if you might be autistic.

Depending on studies and opinions, it is believed that from 25 to 50 percent of autistic people never speak. The percentage seems to have come down recently, probably due to better intervention and earlier attention to struggles. Science is getting better at identifying and bringing problems with speech to the attention of those who can help. Great news!

Many adults who missed autisim diagnosis still have speech struggles, from being completely non verbal to problems with pronouncing words, using them, and voice tone, tempo, expression, volume/loudness, and more.

Those of us( autistic folk) who are gifted with the ability to speak can sometimes be spotted by the way we express ourselves. Most of us have heard about “little professor” ways of speaking as being a clue to autism, for example.

Here are some common presentations of autistic speech.

Pedantic speech : Overly formal, using complex vocabulary, situation-inappropriate because of its formality or details, when simple language would do. This is sometimes referred to as “stilted speech” it is considered stiff, detailed and overly complex .

Didatic speech is speech that is like that of a teacher or lecturer… “telling, explaining, giving detailed information in a superior or pompous way. ” Didatic speech is part of pedantic speech.

Abnormal prosody of speech: Pompous, legalistic, formal, philosophical, quaint… are all forms of prosody : it has to do with intonation, stress of syllables or inflection/ expression of speaking rather than the formation of the words itself.

Many autistic people use abnormal prosody. This is what the Doctor spotted in me. I use all my words, I don’t simplify in speaking with others or in different situations. I have abnormal prosody, my speech is pedantic.

I don’t do it meaning to be pompous, I had always looked at my style of speech as “information sharing”. I love to meet others with information to share, but I have learned not many other people do!
Now I know it is inappropriate to speak in this way and I am trying to change to less formal and less information sharing ways, but a 67 year habit is showing itself as difficult to change. (work in progress) .
Have you ever been called a “know it all”??
If your nickname is something to do with encyclopedia, professor, teacher, books, etc, you might have a form of pedantic speech too.

Pitch/ tone/ volume… how loud, how soft, we speak, or if we are variable in these qualities of speech. We may speak too loudly, too softly, or vary the volume from loud to soft without taking our surroundings or our social situation, etc into account. We may not be aware of this!
Have you been told to shush, hush, or speak up at different times?

Then there is the question of “pragmatics”. Intent, usage of words in context or if they are used “creatively” as metaphors, the use of words in traditional ways allows better “pragmatics” or ability to express ones ideas.
If words are mixed, substituted, changed in form, some loss of intent to the hearer or receiver of the speech is possible.
I know many autistic people who use words in non traditional ways to express themselves.
It can be confusing or amusing to others.
Have you been teased because of your word usage, or told that you make no sense?

The more we have self understanding, the better we are able to make adjustments to help ourselves get the most out of life. Diagnosis is the path to self understanding. Diagnosis can be life changing!


Summary “so far”

This blog is already almost 2 years old!

2020 was one of the most confusing years yet.
Covid19 and its fallout have changed everything forever. Lots of us are scrambling in so many ways just to get from day to day. We know we are not alone in this.

Sorting my autism and finding ways to compensate or accommodate my neurological struggles has continued to be helpful.
Old painful memories are seen in a new understanding and finally put to rest. New ways are being learned, how to do things differently to make my every day life easier. I am having more insight and understanding of others and seeing how my own autism has worked and is still working in my life.
Self forgiveness and healing of old emotional wounds is in there too.

My goals to find and reach local undiagnosed autistic elders has failed miserably.
In our area there are few medical resources, let alone psychologists or therapists. My search for diagnosis showed me how few there were. I guess that is understandable because our area is so rural and such low population. Covid 19 set in, about the time I began my “awareness campaign”.
I began to contact local agencies, places that serve the elderly, the mentally ill, the homeless, the needy, medical/psychological groups, the local newspaper, substance abuse recovery, shelters for homeless or abused folks… I do not do well on the phone, so I generated an “autistic elders” email and began emailing these groups. I probably sent out 50 carefully worded emails. I got not even one response.

I wondered if there was anybody in these offices to sort emails. My email name might have backfired and never been opened due to the name and people’s thinking I was spamming to ask for donations. I hope to contact radio and tv stations next.

I was able to present a “webinar” through the local college which drew only 3 interested new people but at least as many supporting me through friendship. It was not recorded or saved for the internet. I am learning what works. I may take out classified ads in the local paper or on the radio. I have very few funds available for advertising, being a retired person with no income.

I am steadily gaining followers here, which is very gratifying since I am not attempting to self promote. So glad you found me and are here with me! I am grateful for all your messages of support and your interest, and hope you will share when possible, and hope that insights I have written have helped. If you have read some of the blog, you know nothing I have said is in copyright and that I want you to share freely anything I have said that helps!
Just don’t use my words as your own, OK?
Knowing each of us is different in so many ways, I do realize there will be “if’s, ands, and Yeah-buts” regarding any suggestions or thoughts I post here. I find that interesting too!

I have no idea what the future will bring. It is difficult to figure out what one person can do to make a difference for others. “think globally, act locally” was something I took to heart.
I can not change the world, but I can keep trying to find others in my own area and offer insights and suggestions to help the unsuspecting, curious, newly diagnosed older adults right here where I live. I know what a difference finding out about my autism has made in my life. I want others to experience that too!
As always, I will keep you posted.
Thanks so very much for your interest and your support. ❤ I am truly grateful!
Sending best wishes for a better 2021. Stay safe, self care always first! ❤