Autism Awareness April

April has been designated Autism awareness month once again.

The word is getting out. Autism awareness and acceptance news is spreading.
This is a challenge to all of us to go one step more, some of us will make posts, give talks, write our blogs, participate in other awareness and acceptance activities.
I hope we can add awareness of autism in adults to the things we discuss this year. (2020)

Extrapolated from the most recently completed USA Census, There are 1.6 million children in the USA (2 percent of the total population of those under age 18) who likely are autistic.
Awareness is rising and help is becoming available for children. Never quickly enough but we are definitely making progress.

Children do grow up. Here is a statistic that might surprise you.
Did you know there are likely 4.2 million autistic adults over age 18???
(2 percent of the adult USA population age 18 and older). Did you know the majority of them will be completely unaware of their own autism?
Please share these statistics. Those of us who are affected by autism know the difference a diagnosis makes in our lives.
Thanks for sharing, and for promoting understanding of autism in all ages.
Learn more here:

https:// oldladywithautism.blog/author/debrabrisch3436/

feel free to copy and paste! Share Share Share thank you.

Was there LOVE????

Something is missing from the lives of autistic children.

If the insights I am gaining from adult reports of their childhood are any indication.

Growing up I truly believed my family hated me and could not wait to get rid of me,
did not want to hear from me, was not interested in anything I had to say, how I felt,
what I thought. I believed they looked for reasons to try to hurt me, to shame me, to humiliate me, to cause me emotional pain and to punish me. I learned to be wary, defensive, self protective, afraid and anxious.

I still remember vividly almost every incident in which I was treated this way . To be fair, my perceptions might have been skewed due to my very poor visual and audio processing, which did not allow me to experience anything in “real time”. I was not equipped to understand a thing I saw or heard (human interactions face to face or in any person to person settings such as family interactions, school classrooms and free time association with others, watching tv, movies, or today watching you tube or other online visual and audio presentations). Nobody knew or understood about autism back then. I do understand (now) how it happened.

I remember family sometimes said they loved me, but in day to day experiences it was very difficult to believe. I remember my sister asking me if I believed I was loved, and I replied that I believed my mother when she said she loved us. That’s what she said, one did not doubt mother!
But I never felt loved. I never understood the concept of love. Nobody ever explained it. I could not see it, so I could not feel it. Looking back, I can see signs ( now ) of concern and caring, but at the time of my family and youth experiences growing up, I did not see or understand. Nothing in my childhood was ever explained. I was simply ‘told’ and had to accept whatever i was told, and accept it immediately, whether it was good or bad.

I rely on my autistic brothers and sisters on several forums to give me insight and understanding of how my autistic life experiences compare with others’.
I rely on insights they provide to make adaptations or adjustments in the way I see my world. They explain much that has remained hidden to me all these years. I asked on a couple of the larger forums (over a thousand members in each) this question.

“When you were growing up , did you feel loved?”

Hundreds of answers poured in over a period of days. If the answers I got were any insight, the majority (approximately 19 out of 20) reported that they did not feel loved. I was not alone!
I had suspected as much due to the large number of posts with memories of difficult struggles and cruelty reported of childhoods past.
In other conversations, Autistic parents swear they will not intentionally make their child feel unloved, uncared for, ignored, or cast aside, isolated or as though they were being discarded.
I believe it is human nature for parents to want life to be better for their children than the childhood they experienced. (but I don’t know many people who had happy childhoods).

I then asked a follow up question and asked the people who gave me insights to answer another question. “if you grew up unloved, what could have changed to make you feel loved?” and
” If you grew up feeling loved, what do you think made you believe you were loved”?

Overwhelmingly, the answers to this question were so moving. First of all, many of us needed to feel safe. Many of us remembered frequent emotional or physical punishments, criticisms, pointing out of weaknesses and scoldings, never feeling free to be themselves, feeling the anger, disgust, contempt and revulsion of their family members and just waiting for the next round of attacks on their bodes and or their psychological/emotional existence.

Most said they wished they had been listened to, encouraged, had explanations or discussions about so many aspects of life, had been approved of, had been included in family activities, had been at least sometimes the focus of loving and kind attention, instead of being ignored, criticized, cast aside or isolated.
One point brought up over and over, was being kept from family outings, family events, family activities that other siblings were included in.
I remember being sent to my grandparents, who did make me feel loved and worthy and who encouraged me, engaged me, and were kind to me.
I was in about 4th grade when I finally realized that the weekends I spent at my grandparents were weekends that family outings without me happened. I got full reports from the sister next younger, about where they went and what fun it all was. When I protested, and asked whi I could not have gone too, I was told “you had your special time with grandma and grandpa”.

The weekends when my siblings went to visit grandma and grandpa, the rest of us stayed home.

Many others had similar memories. Not welcome in my own family circle to do the fun things they did. What message does that send?


I think I really did not understood about all the facets of love and all its implications or the ways it is shown. I know I tried to make my own children loved, and as young adults, they report I succeeded in that. Somehow that is so precious to me. Of all the things I longed for as a child, to feel I was loved was at the top of the list. I never felt I succeeded with my parents or my siblings. Love may have been present but I did not experience it. I did not believe it. How much of my experience and its interpretation was the truth, and how much was my processing struggles and my autism keeping me from understanding???

I have struggled, as many autistic folks do, to sort my emotions and understand them.

Not until my learning about my own autism, and examining my previous experiences through the understanding of how autism has affected everything in my life did I have more than crumbs of understanding taken from clues in my early life, and most of it I “got wrong” or was incompletely informed. It is a lot to digest, it is a lot to understand. I am still working on sorting it out.

I hope that autistic children today are getting explanations about everything, the nature of things that are not black and white cut and dried in life, things like emotions- love, hate, how they can happen in a relationship at the same time and what it means. How emotions work, how to recognize them, how to understand other peoples’ emotions and what to do about it all.

Parents of autistic children, please keep explaining everything… what, how, why, when…. it is so important your child’s understanding of the world, their place in it, and to their sense of self and their perception of life as it unfolds around them. Don’t assume they understand what seems evident to you. I am fully intelligent, and I can learn, but sometimes I need to have the nature of things explained. In the case of those with auditory and or visual processing struggles, a lot that is evident to neurotypical people can be missed or misinterpreted.

Take time, explain everything. Your children will thank you some day.

Autism hazards

How being autistic might predispose us to behavioral hazards.

I have spent quite a while trying to learn more about autism’s association with some of society’s most difficult struggles.

Exact numbers are difficult to gather, and the numbers give here have been extrapolated by averaging results of studies I examined.

There is much to be learned and decided, but there have been studies on autism and social struggles such as homelessness, substance abuse, eating disorders, suicide, crime rates, jail and prison time.

Here are some of the statistics I found, averaged by combining results, some were significantly higher or lower than the averages I quote here from each group of studies I looked at. I used studies done since 2015, and there was actually very little research done before this on the subject of autistic involvement in each of these social issues.

Autistic people are 7x more likely to struggle with substance abuse.

up to 12 percent of homeless people show features of autism in one recent study. T

here is still lack of much research being done in this area.

One survey of adults admitted for rehab in clinics across the country said up to 30 percent of the people admitted were autistic.

Up to 23 percent of admissions ( in a similar nationwide clinic survey ) for treatment of eating disorders were autistic.

Autistic people are 9x more likely to die by suicide, and studies report up to 60 percent have had suicidal thoughts or attempts.

Up to 40 percent of autistic people report strong symptoms of depression.

27 to 42 percent report struggles with anxiety

Most studies I looked at regarding crime and incarceration were based on general intellectual disabilities rather than on autism, so I will not comment on that, but I know there are new studies being done regarding those statistics and autism.

One thing I have observed is that today people being admitted for treatment for most of these struggles are often being screened for autism. This is not universal yet, but it is a trend which is being reported as recently as 2018 and continuing through today. I find that encouraging.

None of these numbers are scientific from the point of my collecting information and extracting information and averaging it.
I am not a scientist. I am a concerned old lady bystander hoping to bring information to light so that it can be used for better understanding of adult autism, better self understanding, and perhaps better lives through self knowledge and application of coping and survival skills or seeking help if one struggles with one or more of these issues.

You are not alone! there is help available. Please reach out and ask for help if you are struggling.

Crisis lines and local hospitals usually have lists of supports available in your area. Your doctor or social worker can also help you find what you need. Tell others in online autistic communities and ask how others have dealt with these issues. Reach out to family or a friend.
Just know you are not alone, and it is OK to admit you have struggles.
A better life is out there but you have to take that first step. I hope and pray that you do.

After diagnosis

What next?




What happens when older adults are diagnosed with autism? Are there supports or therapies

which can explain this surprising diagnosis and help us understand our new autistic selves?

How will life be different? What do we need to help ourselves transition to this new definition

of ourselves?

Recent discussions in some forums I check out each morning have given some great insights

and not all of them are good.


On the question asking how knowing our autistic diagnosis has helped us, the great majority responded by saying it has not!

I must say this surprised me, considering how much better I feel I am doing now I know myself better and now I better understand my struggles.
For the majority giving answers, simply understanding how one struggles and why has not been enough. Those struggles still exist, even though they have been given a name (autism).

Most respondents said they needed more help. The great majority wished for available therapy to help them adjust to the new information and understand how to cope with the changes this brings.

Many said they could not break down the information of knowing their struggles to understand how to make adjustments and accommodations for themselves; they sought insights but struggled to find those new coping mechanisms on their own.

Many thought they could use another person to help in day- to-day functioning, actions requiring “executive functioning” struggles were the ones mostly named: household tasks such as cleaning and laundry, self care including bathing and other hygiene issues, food preparation and shopping, bill payments and financial struggles were all mentioned.

Finding affordable housing, and transportation issues were also discussed, as well as seeking persons to advocate for them in many transactions, medical, legal, etc. and for helping with filling forms, making applications, finding the services needed. Many services may be available, but finding out about them and applying for them seems insurmountable in difficulty. Even learning of local connections who might help is difficult at best.

Many wanted training in job skills, specialized education, and help finding jobs, perhaps getting accommodations for some sensory or other issues they were dealing with.

Some of these services can be provided through the state level insurance mandates in the United States that now say adult diagnosis and therapies/treatments must be covered (medicare too).
Others may be accessible without the word “autism” ever being raised. Locations where individual help is available vary considerably from place to place, so there is no general outline to tell us which steps to take to get what sort of help.
Getting ourselves connected to the networks used by other groups is complicated and for those who struggle with social issues, can be overwhelming/terrifying.

The forums I attend are international. In other countries there may be nothing at all to address autism . In some there may be agencies where one applies first. Here in the USA we ( autistic elders) are lost and on our own for the most part. Raising awareness is the first step.



Autism enrichment

learning enhancement

stimulation for growth or comfort, adding wealth of experience

creating new opportunities for self expression, growing skills,

finding new ways to connect with our world.

When I was a very young child I spent my time in a ‘chair table’ seat which

kept me confined for much of the day. From the time I could sit up until I could walk with the aid of my parents holding my hands, I rarely left that table. My mother was autistic and I was her first child. She was terrified of germs since they brought me home as a preemie of 4 lbs with strict instructions to wear masks and sterilize everything!!!! I can remember spending time in that chair clearly. She would give me things such as measuring cups, spoons, some plastic toy or bits of food whenever I would get restive or call to her. She spent a good bit of time out of sight in another room but I could hear her, and often she had the radio on. The sounds fascinated me.
It got to the point that I was bored and restricted in that chair and began to fight being put into it.
A few whacks on my bottom got compliance at first, but soon after I began to fight in earnest. She finally understood that she needed to do something else with me. I was allowed to roam on the carpet or spent time in my crib with playthings.. when I was ‘free’ I was hit on the hands or the backside if I touched something I was not supposed to. I never understood why I was getting hit, It would come out of the blue and I never associated the punishment with the transgression. (that is another story).
A few times when at the grocery store my mother selected little “wonder books” from a rack and brought them home. She was a very poor reader, but I do remember her reading those books to me and my sister … the presence of my sister means I must have been at least 2 years old. How I loved the books! I was hungry for more books and as soon as I could talk I asked to be read to and asked for books when I spotted them in the stores. By 4 I was reading way above my age level, my first adult book was “Robinson Crusoe” which I found at the back of my grandmother’s closet on a visit to her along with a treasure trove of Will James, Sanford Tousey, and other books for older kids and adults. It is hard to describe the joy that brought! I started kindergarten as a reader but although we were taught words to read on the blackboard (boring, I already knew them) I was not allowed access to library books of the classroom in first and second grade. Instead while all of the other kids were reading, I was expected to work on my very poor penmanship and learning to print in first grade, then to write cursive in 3rd grade.
It caused me such pain to be punished like that. I felt only discouragement, the idea that I could write well enough to be allowed to read was never grasped. It caused me such despair that I struggled so with writing. I would never get to that bookshelf. ( I never did, in those classes) I was burning to get at the books!

About that time ( summer between first and second grade) my mother learned to drive and took us to the library a few times. I was so disappointed that I was only allowed to take out 2 books at a time. Sister could take out 2 books too, so that gave me 4 new books to look at. Soon I was pestering my mother for more trips to the library. I think she dreaded it and had very little interest in it.. it meant she had to read new and more difficult books to us (she was so dyslexic her reading was probably 2nd grade level).
Mother hated books around the house, ( somebody might ask her if she had read them, or ask her questions about them) although she usually had a woman’s magazine for the new recipe and craft ideas/ decorating ideas they contained. She hid my father’s favorite books in the back of the closet and refused to let him leave them around the house.
I read those magazines, and when I discovered my father’s books in the closet around age 10 I devoured every one of them. “How to make friends and influence people”, “Shepherd of the hills”, “Sgt York and his people”, ” How to build your dream home for under $5000.”… What if I had volumes of appropriate reading material instead?

I often wonder what might have happened if I had free choice and help in choosing special interest books and free- will selection of books at that age? I did not get that until I was allowed to walk to the library by myself at around age 12. I had to walk to school and the library was on the route. I came home with armloads of books several times a week.

What if I had been given more input and stimulation during the early years in that chair and in my first explorations as a barely-toddler. What if? ????

Fast forward to today’s children, especially those confined in any of many ways and in care (as are all infants and small children). Are children getting enough input from other sources besides tv and videos and continual exposure to electronic games ?
Are they having adventures in new places, seeing ,touching, feeling, observing, hearing,tasting new things every day?
At that very young age I was a sponge for knowledge, absorbing everything I could. Instead of being exposed to every possible stimulus and source of input, I was confined for the convenience of the adults in the house, shut away for the comfort of the adults, restrained and made to refrain from learning new things by the adults in control at home and at school.
Parents and caretakers may not be aware of the huge thirst for information and the inextinguishable curiosity that goes with many autistic children (and NT children too!)
Imagine nurseries, daycare, schools, institutions for care taking for both young and old people.

I worked in a child care institution before I retired ( most of the kids were autistic) and my mother was confined to a nursing home for the last 6 years of her life. I saw for myself the poverty of input on those “care” levels. Except for one ‘planned craft’ a day, it was videos, tv, music… and not much else, all day every day, even those in very limited amounts. (the kids had school and counselors daily as well).
I have seen the minimal interest in giving input and creative/ self expressive outlets to the residents there. “it just makes a mess” “what is the point?, it is a pain”.
What a desolate and vacant environment! Overworked, underpaid for the most part, struggling with their own lives, caretakers, parents, daycare workers and some teachers may be far less enthusiastic than the would-be participants.
I urge those who might have autistic persons in your charge to consider how lives could be enriched at every stage of living.

Autism in Adults USA

extrapolation from Census information

By the numbers. The population of the USA is currently thought to be around 327.2 million persons.

Of those persons 209,128,094 are over the age of 18.

Using the 2 percent as the rate of occurrence of autism in the world population (an average obtained from statistics reported by various studies, estimates range from less than one percent to as high as 5 or 7 percent ) .
This means that there are 4,182,562 likely adults with autism in the population of the USA today. There are statistically 1.6 million children under age 18 who are likely to have autism. Check out the numbers. How many more adults in the USA are likely to be undiagnosed with autism given that autism was not even in the DSM until 1980, and not as we know it today.

Millions of $ are being made through diagnosis and ‘treatment’ of children with autism and every year 5,500 new adult autistics graduate high school and “out of the system”.

What about the millions of adults undiagnosed as children?

Why has somebody not seen the opportunity for working with elder autistic citizens for diagnosis, therapy, promoting health and self understanding??
A few people have.

We are slowly seeing a few “adult autism” clinics opening across the country. All have waiting lists of years, not months or days for adult clients wishing to obtain diagnosis, treatment, and information about adult autism.

What is keeping medical schools from teaching about autism as it presents in adults, and in opening such adult autism clinics?
What is stopping hospitals from providing these services?
Money talks.
All states now have mandates for insurance coverage of diagnosis and “treatment” of autism in adults.

What are they waiting for??????

How is it Different?

today, comparing “how it is” with “how it was”

We need to do better. I grew up in the 50’s and 60’s and nobody knew about

autism. I was raised with physical punishment and shaming, a harsh critical judging hand

or voices if I “blew it” when growing up. Spilled milk, bumping furniture or accidentally

running into other people, dropping things, mistakes in judgement or expressing “inappropriate”

thoughts or behaviors, using certain words, tones of voice, looking people in the eyes (yes, I come

from a culture which said it was insolent of a child to look at an adult when spoken to, especially

when scolded (“don’t you look at me like that!”)

Anything I did or said or didn’t do, I was locked into a ‘system’ that looked for errors and was eager to shame, chastise, scold, scorn, hit and hurt. Those are my strongest memories of my childhood. If there was love or compassion, it certainly did not register. Was it them or me?? Or both?


Is today’s child any better off?

Early diagnosis could be so useful! First the child is forced to go to compliance classes where they learn everything they do is wrong and that they have to tolerate everything any adult does to them, and taught that their only escape is to comply. They learn to be eager to please in order to avoid the constant pressure and distress and get the rote ‘treatment’ over with as soon as possible. Kids undergoing this “therapy” are resigned to their fate. There is no escape, no comfort, no way to avoid any demands. They learn to endure, to abide, to wait until they receive directions before they choose to do anything at all because that is safer than what happens if they don’t do that. Do kids like this have time to explore their world freely, to have new and exciting experiences, to try new things, to get stimulation and input from things that are of deep interest to themselves? Or is today’s therapy all about making the individuals ‘fit the mold’ just as I was at home and in school so many years ago. I don’t think as much has changed as it might seem at first.

I worked as a volunteer in a resale shop a couple of years ago. On a quiet day when nobody else was in the store, a young boy around age 10 came into the store with his grandma. He had his hands in his pockets, was rigid with tension and full of anxious movement.. he began to walk fast through the store, exploring without ever touching a thing.
Grandma called after him. “Tommy come back, stay with me or I will never take you shopping again” She scolded and warned him all through the store, giving similar threats. We will never do this again if you don’t “……” this minute! I could see he was anxious and also curious about what was in the store to see. He clutched a wallet in one hand. He had money to spend! I assured grandma several times that he was fine, that I was sure he would hurt nothing, that he was being a responsible citizen and I started helping her see him in one of the side rooms, hands still in pockets, just examining something on the counter. She sighed and said, ” it is so hard, he is autistic!” Did she expect he had grenades in his pockets? Did she think he was going to assault or rob somebody? What was so hard about his behavior and his presence in this situation? I could not see her point and told her he was doing just fine. I made sure he heard me defending him, too. 😉

After he discovered a little box of fossils, he wanted to make a purchase. She must have reminded him 3 times to look me in the eye. She seemed to despair of his behavior and told me he had an obsession over rocks and fossils. ( how trying! that happens to be one of my own passions). She was appealing to the wrong court. 😉
I asked her if he had ever been fossil hunting at our local park, where there are many interesting specimens to be found. Grandma had no idea. I asked to talk to the boy for a moment. He sat rigid on the steps nearby waiting anxiously for grandma to finish her own shopping. I sat a couple steps below him and asked first,” is it OK if I sit here a minute and talk to you? ” He said OK. I asked him if he might be interested in going fossil hunting at the quarry? Did that sound like fun? He said he would like that..
I told him I wanted to leave my name and phone number with his grandma so they could arrange with me to go fossil hunting with him and whatever friends or family members wanted to come along. He thought that was a fine idea.
I went back to grandma (who knew me from previous visits to the shop although we are not actually friends) and explained that I was a fossil collector too and how I would enjoy taking Tommy and whoever else he wanted to bring on a fossil hunt.
Evidently he had not gone on a fossil hunt before. The family instead was trying to discourage him from bringing home nasty, dirty fossils and rocks and trying to get him to do something productive and meaningful instead, maybe lessons on a musical instrument or summer camp for example.
I gave grandma my phone number and email along with my name and asked her please to pass my invitation along to the family, telling her the boy had already confirmed to me that he would like to do this.
Maybe that was not the way to go about issuing an invitation. I am not great on protocol of issuing invitations. I never heard from them, and never saw grandma or grandson in the shop again.
I wonder if the boy will ever get encouragement to feed his passionate curiosity. I wonder if he gets enrichment in any way besides whatever is convenient for the rest of the family. I wonder if he is told over and over “you are autistic so you have to do this ” make eye contact” etc etc etc .

Pointing out his autism to everybody and making it the focus of his presence is not any better than the labeling my family gave me of incompetent, stupid, mean, thoughtless, clumsy, etc etc etc… only now there is the added stigma of saying he is autistic AND all or any of those things.
What good is early diagnosis if the outcome is just the same as it was for me all those years ago when nobody knew? I see very little difference.
The only advantage with early diagnosis might be that the child could defend himself by saying “i can’t help it, I”m autistic”… which may breed a whole new set of behaviors and problems.

We have to do better with the tools available to parents with young autistic kids today. Kids need to learn they are cherished and valued and appreciated, not just labeled and seen as something that “needs work” to be OK and right in and of him/her/them selves.
How can we get families involved in such a way that the autistics in the family are every bit a part of the family, every bit as cherished, every bit as respected and cared for?
I am sure there are families out there where this is happening, and I am sure that there are many caring parents working hard to give their autistic children every advantage in a loving and supportive way.
But I think there is something deeper, something that needs to be found in raising an autistic child. That is to see the individual behind the struggles, to speak to them and explain everything possible regarding their autism and their care, their strengths and how plans are made to support and address their weaknesses and to tell them when new things are being discussed, including them in the decisions made when changing anything about the child’s situation, conditions, struggles, strengths, school or medical programs, etc.
It goes back to “nothing about me without me”. Not all children will be ready to share feelings, ideas, thoughts, and desires or give other input, but please understand the well known phrase “nothing about me without me” is applicable to family matters and matters relating to an individual in a family situation too. First and foremost I am a person. I may be your child, with a child’s understanding of my world, but I need to know I am important to you, and that you care, too, about my feelings, thoughts, wants and needs.
I will not be likely to understand, I will be frightened, I will fight, I will resent, I will not ever feel loved, cared for, or appreciated if I am discussed like the family cat or the houseplant on the shelf, with no acknowledgement of myself as an individual with thoughts, ideas, feelings, and opinions of my own. If I am suddenly thrown into new situations, classes, treatments, therapies, or programs without discussion, explanation, warning and preparation. Inclusiveness begins at home. Is your autistic child really a member of the family? Or is he or she first and foremost a burden, a pain, a responsibility, a tragedy, an annoying intrusion, useless, valueless, disappointing, and inconvenient? What does your child believe about himself and where do you suppose those ideas came from?

Communication

What to do when you have no words or voice?

What if you don’t read, understand my language, or speak my words?

“I think my cat is autistic”. There are memes, maybe a book or title of a short essay, comments from many of the people in some of the online forums I visit or participate in.

Our cat was a street kitty, we think he was abused before we found him abandoned at about 4 months old and brought him home. We believe he was abused, certainly he had not been handled by humans much, perhaps he was even punished for approaching people (boisterous innocent kittens will climb up a human as if the person could not feel those tiny claws… ouch!). Our new cat hid and was very fearful for over a year, and one day he finally approached us as we sat quietly in our living room, and crept very carefully onto my husband’s lap. First time he had approached us wanting to be with us.

We have had him for almost 9 years now . He has taken on the role of sherriff/prince/enforcer. He knows the schedule.
If I am not up by 4AM he stands outside the bedroom door and calls, or pounds on the door with his front feet until I am up and moving.
Next, to the bathroom, where he gets a drink from the faucet in the sink while I do essential things. Then I open the door to the stairs which lead to our breezeway.. If I don’t do this quickly he pounds on that door with his front feet too.

Then I prepare coffee and cat food. I must do the cat food first! Then about 3 hours later the dog comes to get me and I feed her, first giving her meds wrapped in cheese. The cat is there to supervise and to step up as I fold the dog pill in the slice of cheese. He always get a piece of cheese too. ( be fair and not favor one family member over another, right?)
When the dog goes out, it is “play with the kitty time”. As I close the door on the dog, the cat comes towards me sideways on tiptoes, with his fur puffed up in joyous anticipation. We play with the laser pointer until the dog barks to come in. If I ignore “play with the kitty time” I am harassed, pestered, and finally bitten on the ankles if I do not comply … lets play, its time! No mercy until I get the pointer. My fault for starting that particular routine.

The cat guards the house faithfully all day, going from one room to another to watch out the windows, and taking random naps when exhausted from his duties. He will come to tell me if anything is amiss and pester me until I am fully alerted to whatever is wrong. He has alerted me to cats, dogs, and people in the yard or approaching the front door. He alerted me a month ago when a small motor from a tumbling rock polisher in our basement burned out and was smoking.
I was exceptionally stupid that time and it took persistent and vigorous attempts to alert me before I finally understood something was seriously wrong.
I followed him from my computer desk at the back of the house to the basement stairs where I could finally smell the “electric” burning smell. He may have saved us from fire!

The cat has a thyroid condition and eats huge quantities of food, drinks tremendous amounts of water every day. His dish is in constant need of refilling. He will pester me until he gets his food dish refilled. If I ignore him he continues to escalate his “attention getting” behaviors. He calls first. Little chirps, followed by meows and on to full out yodel. If I don’t respond, he comes to me and rubs around my ankles with his face. He stands in front of the computer screen. He bites the edge of the screen, stands on the printer, begins to throw things off the desk, and if all fails, he bites me . That always gets my attention. I am a very oblivious person when locked into research or other computer activities.

The cat stands guard when I nap or when I take a shower, and when it is bed time.
If I don’t follow routine and go to bed at the usual time, I am pestered, my ankles get swatted and nipped, and I am ‘herded’ toward the bedroom. Routines must be enforced!

Things that deviate from normal upset him. Visitors are considered intruders until he has met them many times and they have proved their non threatening status.

What does my cat have to do with autism?

You can see several parallels… his anxiety of changes from regular routine, his desire to avoid social interactions with strangers, I could go on, but that is not what I am actually trying to point out.
If the cat tries to get my attention and can not do it, if his attempts to communicate are ignored, he will ‘escalate’ his provocative behavior until I recognize he needs or wants something from me. Something requires my participation to answer his needs. If he is thwarted and frustrated because I don’t respond in the way he needs and wants me to, he finally bites me in order to get my attention and response.
Here is the message.
Can we compare the behavior of a cat with the behavior of an autistic person without words? How many times are we stupid about seeing needs and wants of that individual because they do not say plainly in words what they need, want, feel, think?
If a cat can have such understanding and work hard to communicate, why don’t people understand how desperate a human without words might be to obtain similar interactions with those around him/her/them? How frustrating and hurtful to be dismissed as stupid, unthinking, unfeeling? How long before despair and resignation and hopelessness set in? How about anger and frustration?
If a person resorts to escalated behavior including throwing things around, beating on things, or biting themselves or others, maybe the reasons lie in the fact that their other ways /means of communications are not being sought or heard or acted upon. Think about that.
Maybe its time to listen, to watch, to stop dismissing behaviors as random or annoying, or something to be trained or punished away, and maybe we should be attempting to find new ways to communicate.

If my cat is working so hard to communicate, can you doubt that the non-speaking autisic person in your life is trying to reach out to you? Isn’t it obvious that this must be true?
Dismissing persons without words as stupid or treating them as if they are also non-thinking or non-feeling is a serious mistake.
So called “intelligence tests” are meant to measure the responses of people who have words. It is a serious mistake to assume that because one does not have language or may not be able to speak or read, one is not intelligent, does not think, and does not feel.
It seems imperative to me that any and all methods should be used to find ways to communicate. Not just to force speech or train word responses, but also to look for ways to seek behavioral signs and to listen and to watch, and finally understand and then respond to the things that non-speaking persons may be trying to tell us.




Double Empathy

whose point of view measures autistic responses?


This is extremely important! https://wordpress.com/read/feeds/92352784/posts/2592725199

Quincy describes the problem very clearly.

Countless studies have been done over the years supposedly measuring autistic subjects responses to emotional situations, to situations regarding “theory of mind” and to measuring empathy and the like. How do we measure emotional response? Can it be done scientifically? Some of the problems regarding the design of “tests” and “studies” of autism are subjective to the views of the testers.
Autistic adults on the “elder autism” forums I attend discuss tests about ‘cold autism’. ‘Lack of insight’ , “Lack of empathy” knowing these tests are completely inaccurate and scoffing at the claims made. Nothing about us without us… time for science to take a second look at some shoddy and poorly constructed “tests” of autistic subjects.

My personal worst gripe is the test that supposedly measures emotions viewed in photographs of eyes. The photographs used in the 2 tests I have viewed use actors and people “pretending” the emotions that are being portrayed. The human “pretending” to feel certain ways is not likely to express themselves exactly as a person who actually feels the emotions. There is a social bias in this test which is outrageous, since cultural traditions and training also have a part in human facial expressions.

The list would be a mile long if we named all the false conclusions “scientists” have presented as truth and reality. Please read and understand what is presented here.
I am Grateful to Quincy for permission to share. His insights and eloquence here are unparalleled. Read it all!

There is an old joke about a scientist who cuts off a frog’s legs, one by one, saying “jump frog jump” and each time the frog jumps with 3, 2, 1 leg, he measures the distance and records it. Then he cuts off the 4th leg and says “jump frog jump”. The frog does not jump. Scientist writes in his little record book “frog with no legs can’t hear”. Think about it.

Who benefits? Follow the Money!

and “nothing about us without us”


I will be attending my first Developmental Disabilities conference at the end of the month. In preparation I have been looking at the state’s setup for supporting autism. Most states now have some mandates requiring insurance coverage for diagnosis and treatment of autism in adults. Requirements for coverage differ from state to state.

The state I live in (MIchigan) has established a “state autism board” to guide and direct autism support activities.
I was not the least surprised to see many persons highly involved with autism, ABA therapists and consultants, Insurance Navigators, and some very active in Parent groups like Autism Speaks. Oh my, can you spot what’s missing???
All of the people profiting from autism treatment and insurance benefits, not a single autistic person among them. !!!
Who gets all the money pumped into the “support” (financial) of autism from government ( national, state, local) ????
Maybe those groups??? hmmmm???
Who decides how that money will be spent? Who decides what treatments and practices are most “beneficial” and to whom ???

( hint: it is probably not anybody who is autistic).

New topic same subject. There are almost no therapists working with adults, and doing adult diagnosis in this state . There are a few who don’t take insurance, cash only. Very few and far between. I wonder why some enterprising medical college, hospital or similar institution of knowledge and learning does not set up an adult autism clinic?
Why are teaching colleges not offering instruction using latest information about autism diagnosis for adults as well as children?
There are hundreds of thousands of autistic baby boomers who remain undiagnosed and who could benefit greatly from therapy for emotional as well as physical struggles and addressing trauma from years of struggles without knowing diagnosis.
Now that most states mandate insurance coverage for autism diagnosis and treatment (in adults too, yes!) I hope to see great things come of the newly available money to be made .

Gerontology and all support structures will be dealing with autistic adults (and autistic adults dealing with them), In very large numbers as boomers all will be over 65 by 2030.

A wise medical school will begin to train specialists in adult autism to meet a need which is going unfilled and is becoming in demand as the older generation learns about adult autism and wonders if they too might be autistic.


Persons thinking ahead will see that beyond the ‘baby boom’ generation there are generations of already diagnosed adults reaching maturity, needing supports, needing help adjusting to adult life, needing therapy and who will eventually also be ageing into a steady stream of autistic adults needing professional care and attention, diagnosis and support of all kinds.


There are only a handful of clinics and diagnosing entities focusing on serving adults in this country. One I know of in Illinois has such demand for services that people make appointments for diagnosis and subsequent treatment up to 2 years in the future… people are standing in line for services.!!!!

Who will see the need and fulfill the potential?

Students considering medical and support careers would do well to consider some branch of autism specialty which actually uses today’s information to diagnose and address autism struggles.

( have you noticed that ABA is not scientifically proven, only results based, and many autistic people both those who have “been treated” and those who were lucky enough to escape due to old age- are beginning to revolt on behalf of children undergoing what is being exposed as damaging and even traumatizing “therapy”?)

Diagnosing neurologists and psychologists specializing in autism are needed desperately.
Hospitals, private practices, psychologists and therapists already in practice could add adult autism specialties to existing services.
I can not understand why the medical communities, usually so quick to see profit in certain branches of medicine, have let this one lapse????
Watching with interest. The next few years should be very informative.
Will autistic people benefit?