Proprioception

Knowing where you are in relation to absolutely everything else.


Autism is based in our bodies’ uneven neurological development.

Proprioception is the sense (based on our neurology) that tells us about our bodies in relation to our physical world.

Proprioception tells our bodies we are going fast on our bicycle, when we run, or in a car.

Proprioception helps us navigate through a crowd of people or a room full of furniture, or driving our cars or bikes, through the traffic, or walking, running or moving our wheelchairs through the, hallways, rooms, navigating doorways, ramps, etc etc successfully.

Proprioception is what helps us stay upright in rough terrain or keeps us from crashing into things.

Proprioception is what tells us how hard to hit the nail with the hammer, how much force to use while trying to open the jar lid, how hard to pull the shoe strings when tying our shoes, how hard to pull or push to open the door, etc.

We use our sense of proprioception every day to inform ourselves about how to proceed in almost any situation.

If you have been given a diagnosis or dyspraxia or ataxia, your proprioception is definitely affected.

When our proprioception is “off” we can run into furniture or smack ourselves passing through doorways, fall off our bicycles (if we can ride them at all!).

Those of us with poor proprioception can stub our toes or smack our knees, elbows, or hands repeatedly when accidentally passing to near any object, including other people.

Poor proprioception means we may be the kid in gym class that can’t catch the ball and gets hit in the face every time, instead. We are the ones who are yelled at for being clumsy, for standing or following too closely, told “watch where you are going” and “hand’s off”. It is not something you “grow out of”, but I have learned that the right kind of therapy may help in some cases.

As we age, our bodies do not have as much strength or responsiveness and we are at risk of falls. To a certain extend, we can help ourselves by being aware of risks such as marking steps, removing throw rugs, providing hand rails, and other reasonable accommodations.

Proprioceptive therapy, whether self administered or through an occupational or physical therapist can be very helpful.

Do it yourself: there are loads of videos on the internet as well as charts, diagrams, pictures, etc which explain how to help your balance and how to strengthen yourself and train your body to be able to use it more safely. The thing is, it is something that needs to be done frequently. If you do a set of exercises one or 20 times, and then quit, you gain nothing. The body needs frequent input and practice for these new ways of moving to be effective.

Join a class: There are many classes these days for seniors, either online or in person, which teach yoga, Tai Chi, and other ways of using your body for best effectiveness.

Therapy: Ask your doctor to refer you to a therapist or occupational therapist who can help you learn new ways to use your body to prevent falls and injury.

There are loads of lists of proprioceptive activities for autistic children, and many of these may also be applied to adults of any age.

Join a group: you could even form your own with one or more others interested in meeting for practicing proprioceptive exercises and outings together.

Examples of proprioceptive activities : Hiking, Biking, pushing or pulling anything, playing catch or kickball, hackeysack, or dribbling or bouncing a ball against a wall and catching it repeatedly.

Standing on one foot for as long as possible ( of course use a grab bar or other support to catch yourself if need be).

Jump rope, bounce on a trampoline or an old mattress, or simply jump up and down, both feet or one foot at a time.

walk “one foot in front of the other” forward and backward. Use a line on the ground/floor to guide yourself, if you need to.

Walk between cones, then walk backward or sideways from each side, the combinations are endless. The idea is to carefully perform each of these things being aware of your body movements, your weight distribution, and your position as you perform each one.

Shovel, lift weights, do pushups on the floor or against a wall.

there are books written about this stuff! There are so many ways we can enhance our proprioception and help keep ourselves safer from accidents and falls.
Please be aware that we as a group (autistic elders) are more prone to falls and injury as we age due to our neurology. Know that you CAN do something about that!

Most of us have problems with proprioception, but we can take action to protect ourselves now that we know this.

If you don’t know how to proceed, ask for help from others.

There is no shame in reaching out for information and learning how to do something new.



Autism in motion

Talking about the way we move and our sensory experiences


An online discussion in an autism group the other day got me looking up information on proprioception and motion in autistic folks.
I looked at several studies and was disturbed by a series of reports which discussed the differences in the way people move. Comparison was done on limited numbers of young autistic adults and children and a similar group of neurologically normal/average (neurotypical or NT) adults and children. It has been discovered that the autistic ability to adjust oneself to one’s surroundings (proprioception) seems not to rely on visual input, but other senses are used more strongly instead.

It was suggested that this finding could be used to correct the way autistic people carry themselves and how we move.

My own autisistic neurology has been tested to be 25th percentile visual processing performance, and 35th audio processing performance. My NEUROLOGY is set up differently enough that I do not function well using vision and hearing in my everyday life. I must rely more on still images, written words, and the sense of touch (smell and taste too) to get understanding of my world and to make my way. The idea of training me to use my vision to have better proprioception is ridiculous.

This goes back to the many studies that show us some little fact about a certain group of autistics studied and the conclusion that because we do things a certain way, now we know that, we can correct it.

Take it a step farther for illustration : because we know Terry is in a wheelchair and doesn’t walk, we can make Terry walk by teaching him/her to use their legs. or, taking it even to more extremes,but referring to another neurological condition (also one that appears in a high percentage of the autistic population) knowing when somebody is epileptic, learning how the seizure occurs, we can teach epileptic folks not to have seizures. Wrong conclusions.

Wrong, too, to study small groups of people, 23 in one study I read and 100 in another, and draw the conclusion that ALL of us are the same in our use of vision or any other sense.

So many so- called studies are so absolutely blind to common sense.
Studies still try to lump our different neurologies into a one- size -fits- all, “everybody all together with the same signs and struggles” with lots of assumptions about function (If a few are like this, all must be like this).
It is true that many autistic people, probably the majority of us, struggle with proprioception.
It is also true that autistics can be outstanding athletes and performers of physical feats both small and large motor oriented.

Along these lines of proprioception and motion, I found discussions and studies about autism and the need for proprioceptive input.
When we “stim” we are seeking feedback from sensory stimulus.

Swaying, rocking, spinning, flapping, slapping, stomping, throwing oneself against a wall, or the floor, biting or squeezing oneself, scratching, pinching, burniing, cutting, jumping,walking, running, etc are all seeking sensory input.

I spent a lot of my childhood doing many to most of these things to myself at one time or another. I had another of those “aha” moments recently, while thinking about this.


As a young teen, I walked everywhere, all over our town, both daytime to and from the school,( about a mile) the downtown shopping district (about 3/4 of a mile away) the library (about a mile). Then when homework and evening dinner and dishes were done and the rest of the family sat down to watch television, I left home and walked and walked and walked.
I remember walking to the far side of town and thinking I would walk as far as one street went. I ended up far out in the corn fields, barns, and unlit spaces of rural country. I walked back home, too.

I have realized how important this walking motion had been to my ability to survive my daytime life.
I was stressed all day at school, came home to even more stress, and in summer vacations was most stressed of all because even the stressful school situations were less distressing than my home life and the situation I grew up in.
My walking helped relieve the distress, tension, stress, anxiety, and gave me focus, gave me plenty of proprioceptive input in seeing new surroundings as I walked.

Feeling the ground beneath my feet, feeling my body in motion, walking over various terrains and making constant adjustments to that and allowing for avoiding traffic, avoiding other people, thinking about where to cross at intersections and how to avoid giant mud puddles, barking dogs, etc, the scents, the sounds in each place I passed through; all provided loads of proprioceptive experiences without my having to worry about the troubles “back home”.

My thoughts turned to the caged “big cats” and other animals in any zoo situation, dogs and cats kept as pets, and the horses I have worked with all these years until my recent retirement.
In cases where natural activities are restricted, these animals develop quirks and ticks of behavior. They rock from side to side, shift their feet in a specific pattern, changing balance from one foot to the other. They self mutilate, They kick the walls or chew them, or do all of the above. They may eat their own feces, urinate inappropriately, have unnatural rituals or participate in patterns of destruction of their surroundings. Check with any zoo keeper, stable hand, or kennel worker, check with pet owners!
Confinement under unnatural or stressful situations needs to provide an outlet. Those that don’t get this natural outlet will find other ways of expressing their needs.

How much of that can we apply to people confined to their homes, to support /care institutions, to hospitals and nursing homes, to situations such as schools and offices or day care?


All of it!!!

Highly intelligent in our own human way, we probably need a lot more support in those confined situations.

Humans are indeed animals, and our natural state is to be in motion.

If we provide plenty of opportunity for more natural proprioceptive input for animals in zoos and horses in stables and confined to small paddocks, or to pet dogs in apartments or houses , many of the unnatural behaviors are limited in expression or fail to appear, disappear in those with established habits.

How can we provide opportunity to move naturally for those who are restricted to rooms, houses, institutions, or other unnatural surroundings, especially those of us in “captive” situations?
Think of children at home, think of children at school, think of all those adults in any situation where their actions are constantly controlled by others.

Think of ways we might be able to help so many who self injure, have unwanted habits of seeking proprioceptive stimulation in unhealthy ways.

What can be done to help provide healthy activity instead?

There is no way to express how strong a need there is for awareness of this principle in the autistic/autism communities and classrooms, homes and institutions of today.

I read so many complaints and distressed queries from staff and family members where somebody is hurting themselves, and what do we do?

think about the multiple ways to provide proprioceptive input that might be available and pour it on!

More about ways to provide proprioceptive input soon.

Autism and energy



Autistic exhaustion : why life is harder for us.

First, let me say this is not some sort of one upsmanship social game, ” my life is harder than yours, poor me!”
I am not looking for sympathy, empathy, etc, I simply want to explain about the amount of effort and energy it takes me or most any other autistic person to do “everyday life” in the mainstream of society.

We ( human beings) all have struggles, I know, and circumstances in life can be very hard.
Consider that what is effortless and natural, maybe even subliminally understood has to be derived for most autistic people through conscious effort to focus, sort information, categorize it, decide what response is required and to call upon memory and training to elicit the “proper” response.

None of it is “automatic” or intuitive, but for many autistic folk, must be constantly viewed, heard, felt, sorted and processed before we can perform.

It requires a great deal of purposeful behavior, directed in consciously thought of and deliberately performed ways to do what most neurotypical people do from some natural store of saved information and programmed, automatically accessible responses or actions.

Many of us (autistic persons) do not have intuitive understanding about any activity or situation.
That means we have to work hard to understand and come up with the correct response.
Meantime, sensory input is not automatically sorted into background noises, background activities, which is important at the moment and which can be safely shut down (most of us can’t shut input down) and ignored. So we expend mental and emotional energy trying to sort information we recieve from all our senses all the time.

Almost every act, every word , in any social situation requires deep focus and concentration, strict control of responses to self edit and direct words and actions, and conscious attention to not only the person or persons involved in the interaction, but also to keep from being overwhelmed by the other things going on around us, by the emotional responses or anxiety to do well and not “mess up” the interactions, sort visual, audio and other sensory input and grasp what is needed to perform the interaction at the same time as trying to keep all the other sensory input from overwhelming or intruding.

Most “normal” “average” or “neurotypical brains” do this stuff automatically, but for many autistic folk each part of any activity or interaction must be consciously sorted and directed, and in so many cases, this is done much more slowly and deliberately since any response is not automatic.

The major underlying automatic response for me is to be afraid… afraid of what will happen if I mess this up, afraid of making somebody angry or annoying them, afraid of being mocked or bullied or chastised, afraid they won’t understand what I am saying or that I won’t be believed. Coping with this feeling of fearful anxiety takes energy too.

I have a terrible time trying to sort out what is being said, what is actually meant, what is expected of me, and what I should do to respond in every situation. Depending on our sensory processing, the problems other autistic folks have in interacting may be very different from my own.

Unless the setting is exactly the same every time, each experience is new and I have to decide carefully on my responses or dig through my emotional and mental response resources to draw from scripts saved in my head. This is conscious, and not automatic. I can “lock up” or “freeze” when attempting to find the correct response, especially if I feel pressured to respond quickly. Worrying about whether this “freeze” might happen adds to stress and distress of the performance anxiety which is always present in social interactions. Stress drains energy and emotional resources too!

Practicing scripts is useful, and has proved helpful over my long life, but they are only useful if I can find them in my mental files and recognize the opportunity to use them. I can get the scripts very wrong, and can misapply them, leaving aggravation or bewilderment, dismissal and rejection in my wake. So very frustrating.

Communication struggles are one of the core struggles of autism.

These struggles take place all around me every day, even at home.
It is much more difficult to succeed in interactions in unfamiliar places, places with loads of sensory input (lights, sounds, activities of people, machines, traffic, or other unfamiliar surroundings) and it takes a lot of emotional and mental energy to perform under stressful and distressing (to me) circumstances. Things many neurotypical people take for granted must be dealt with as individual actions needing sorted and active responses considered, sought and sorted from previous experiences and applied consciously rather than as simple perception and responses typical of “normal” folks.

No wonder I am exhausted after a day out, whether planned activities for fun, or things I must do as part of living life and the things life brings to us.

Emotional and mental resources give in to overwhelm. Many times after doing things in the “outside world” I come home and almost immediately require a nap!

If you are autistic, you probably understand what I am trying to convey,

If you are not autistic, I hope I have helped you understand why some things that seem so easy and simple for you are actually very difficult for many autistic persons.
I hope you will take this into account when planning activities, outings, or any other situation where you may include us in your agenda. I ask that you will help us find a way to escape the activity if we become overwhelmed, and that you will forgive us and not be offended if we don’t fully participate, leave early, or decline an invitation.

Please understand: Even the seemingly simplest activity can be very stressful and difficult for those with autistic neurology.

So that’s why!

that feeling of discovery


We have all had them, those “aha” moments when ideas and details come together to form a complete idea and we finally “get it”.

I had the pleasure of spending some time with a fellow rock and fossil collector one recent afternoon. We explored and collected specimens in a local area that is well known and were able to share finds, thoughts and ideas. We had met on the internet and shared finds, thoughts, and ideas in a local collectors group for over a year, and agreed to meet “in person” for the first time to hunt specimens.

I have found this is a great way to make connections and to “find my own kind”, slowly getting to know somebody through internet interactions, messaging and emails… shared ideas, through posts in interest groups, using photos, asking questions of each other.

The transition to “real life” interaction was painless and without as much anxiety as I would have experienced in a group activity among strangers. The meeting was well planned with location, time, and expectations we both had well defined ahead of time. My slower processing speeds work better online and of course allows for better understanding.

As my companion and I walked along, sorted finds, and talked, he would ask me a question, and after I responded would be silent for a few moments, then would say
“so that’s why”.

I was charmed. I am sure I was seeing autistic thought processes in fully engaged mode.

The use of that word “why” seems to me to be a dead giveaway.

Interestingly enough, we shared similar family histories and early life experiences, had similar outlooks on life, and similar views. Like seems to be drawn to like. Life struggles he described sounded familiar to me. It stands to reason that over time some part of our selves find others we identify with, understand, and who seem to be ‘coming from the same place’.


In a world full of billions of humans I find that this seems to happen over and over. Amazing!

The “why ” questions we both asked each other (and gave answers to) were basic information sharing, about our rock and fossil collecting specimens, about geology and about others we both knew from the group, as well as about each other’s life histories and situations.
Where so many people tend to hide their struggles, many autistic people are open, frank, and direct about almost everything.

“Why ” seems to be what many of us (autistic folks) base our interactions on. We need details surrounding almost everything in order to understand.

I loved hearing my companion say “so that’s why”.
It was great feedback that meant I was with somebody who understood me and who I was able to understand as well. Finding somebody like that in today’s world is like finding a ruby in the sand on the beach. Rare and valuable, and infrequent.

Listen to how others around you use the magic word “why”. My friend does not identify as being autistic (yet).



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.





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?