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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You might be dyslexic, hyperlexic, or be unusually talkative or withdrawn.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!





Autism Diagnosis online?

Web-based health care raises interesting questions

With the advent of Covid -19 restrictions come new ideas for diagnosis and treatment of individuals.
Instead of going to the doctor, many are staying home in front of their computers and talking to their doctor or other health care individual using web-based technology.

This prevents potential exchange of germs/virus/disease through limited contact.
Insurance companies are beginning to approve these “meetings on line” as they would an “in person” consultation. There are loads of convenience factors and cost savings when this works well for both parties.

What about seeking diagnosis for autism on the internet using such services?

I have witnessed an increase of diagnostic services available along with “treatment” and other autism related “professional advice”, from people who claim expertise and who will give advice and diagnosis using web cams and internet messaging questions, or phone diagnosis.

This is very encouraging. Diagnosis may be available more easily without the wait and the stress of “in person” testing. How tempting !


BEWARE AUTISM SCAMS and WOO WOO

Reminder here to be wary of those on the internet claiming to be professionals, and seek verification of qualifications carefully.

I just did a quick search and found many web sites claiming to have doctors available to diagnose and help at the touch of a button.

No locations were given for their services, no physical way to contact them and their names were hidden
.
Example: Dr J had a very earnest looking profile photo of a middle aged man in a white coat and descriptions about how he cared about his patients, how he was careful and thorough, etc, supposedly in his own words, were printed below his image as quotes.

The on line ” psychology clinic” I visited had several profiles of very caring looking individuals with similar descriptions of the comfort and insight they offered along with their diagnosis and treatments.
I could not find documentation for any address, location, registration of professional groups, or other information either on the website or in on line searches.
It all looked so professional and caring, without a whit of actual concrete information to back up their claims and the identities of any individuals related to the pages.
Even superficial investigation raised more questions than answers.

I have been approached through my blog, through interviews I have given to autism web sites and individuals, and through my public email address.
Somebody can help me!!! Always for a fee, always somebody who truly cares, always somebody with flashy web sites long on “sincerity” but short on true information about location, training of the providers, professional involvement, experience, etc.
If somebody approaches you offering to help, ask yourself “why”???

Informative videos on you tube and other web locations can be helpful, but look for full identity disclosure, including verifiable information such as address,phone number, business filing and standing with local authorities, documentation regarding education and practice, etc. before deciding to use this new tool.
Will your insurance pay for it?
Will your application for aid be taken seriously when you tell the Social Services person you got diagnosis through online websites from another country?


The idea of being diagnosed from the comfort of your own home is tempting.

Do your homework very thoroughly first!

Who benefits from giving you a diagnosis? How much of your hard earned cash will you have to cough up?

Will you give your credit card number and never hear from them again?

Will the diagnosis help you obtain disability or workplace accommodations or is it the equivalent of the “5-day degree on line from our intensive courses” .

Where were the diagnostic individuals trained, how long have they been practicing, what is the phone number and address of their place of business, look past the flashy website for actual information and use your research skills to follow up the claims and verify the statements made on that web site.

Is the individual known and active in their own community? Is the business registered in that country, state, city, and are all legal requirements for practice met?


The internet is a life and sanity saver for many of us, it will be with us for a long time in the future and practices will continue to grow and change as more and more business is accomplished at the touch of a button from home or office. The web is a great tool!

Unfortunately scams and fraud are always with us. Don’t be a victim! Check out claims of training, experience, degrees, associations, Schools, Clinics, and publications, etc. thoroughly before even thinking of proceeding.

Atypical

Not your average label


I have been reading about autistic people with previous diagnoses to getting a diagnosis as autistic.

I attend discussions and online forums on various web pages every day, and also am moderator or admin for a couple as well.
I read over and over about people with diagnoses – but they are “atypical” in presentation of the labels/ diagnoses they have been given.
I am reading recent studies looking at how many older autistic adults have previous diagnoses before learning about their autism.

So many people tell of diagnosis of many sorts, but say they have unusual presentation of symptoms for that diagnosis.

Almost all diagnoses are mentioned in these discussions. Schizophrenia with unusual presentation, Bipolar, Borderline, OCD, ADHD, Depression, Anxiety, PTSD….all with non- typical behaviors, etc. you get the idea.

I just want to call to your attention that when Doctors don’t know where to put your diagnosis if they don’t know about autism, they may put diagnosis in the closest category of things they are familiar with, saying your presentation is unusual but matches most closely with… ____________. whatever the diagnosis they give you besides autism.

If you have such a diagnosis and you are still trying to find out if you are autistic, especially if you have been getting therapies, or medications, without standard response, this might be a strong clue that your actual diagnosis might be autism.
Misdiagnosis is very common because autism is not well understood among the majority of professionals today.
We may not respond to standard therapies for our “atypical” diagnosis, finding them not useful, not understandable, difficult and unhelpful, frustrating and more.

We may have been told our case is “intractable”. (nothing they try has helped).

We will not respond in expected ways to medications, either.
After all, it could be that the treatment we are getting is not for our “actual” diagnosis.


If you find yourself in such a position, it is perfectly OK to question that diagnosis. It is perfectly OK to say treatment is not helping and ask to try something else or to look at other options, even ask if diagnosis could be “something else” .

Sometimes people do have multiple diagnoses, and treatment will possibly be more complex. Knowing about ones autism as well as any other diagnosis can only help to shed light on struggles and offer new and helpful ways of living our lives.

If you have not had success being treated for your “atypical” diagnosis, you might want to look again at Autism being the answer.

Knowing we are autistic opens a world of self understanding and helps us find useful accommodations to make our lives better.

Diagnosis of Autism can be life changing, even as an older adult. The difference between my life ” before and after” diagnosis is immeasurable.

Autism associations

Regarding genetic and developmental syndromes

Today I took some hours to look at associated genetic developmental syndromes. I looked at studies from 2004 to the present , they were easy to find, there have been a lot of studies done which mention autism as associated to these syndromes, some of which are quite rare. If there was any question that autism is developmental or genetic in origin, perhaps this will be informative.

Search any of these scientifically and medically defined syndromes by name and add “autism” to the search key words for as much information as you can handle. The studies are there in significant numbers.

List from this morning’s work. Any diagnosis can be “stand alone” or it can be “co morbid”, these seem to be associated with autism often enough to have been mentioned in over 24 studies I used to compile these associated syndromes. I am sure there will be more if I continue the search and study. Do you have, or do you know anybody who has one or more of these syndromes and is/are also autistic?

Names of Genetic Syndromes associated with autism

Hamartoma
Fragile X

Cri-duChat

Tuberous Sclerosis Rett

Down

Phenylketonuria

CHARGE

Angelman
Prader Willi
Neurofibromatosis
Laurence Moon Bidel
Joubert
Goldenhar
Hypomelanosis of Ito
Noonan
Sotos
VCF
Lebers amaurosis
Ehle rDanlos
Williams
Ludan Fryns
Coffin Lowrey
Moebius
ADNP
Cohen
HEADD
Phelan Mcdermid
Stenert
Timothy
Marinesaro Sjodgren
Smith Lenli Opitz
Coffin Siris
Duchennes
2Q deletion
De Lange
Rubenstien Taybi
MOMO
Smith Magenis
Apert

All of these syndromes involve genetic changes that cause differences in development of various parts and systems of the body. Interesting, Isn’t it?







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