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.

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?

Advocating for Late Diagnosis of Autism

Maybe this is going to be a rant?

I have sought out any and all information I can find about being old and autistic at the same time.

Last year I read a 2015 book advocating for medical and support professions to get ready for old autistic people entering the system. Autistic people will be needing more support as we age. Much suffering and distress can be avoided by teaching doctors, therapists, and support staff about autism and how it affects a potential subject in care for any or many reasons. Autism masks symptoms, causes diagnostic and care struggles, can be misinterpreted as many other things to the detriment of the person being diagnosed or treated, and the extreme difficulty( sometimes) of the staff serving that autistic person. The entire “baby boom” generation will be over 65 by 2030 and many have not been diagnosed with autism, diagnosis as we know it today simply was not available when we grew up.
Each chapter was written by a different author. I was shocked to read the chapter by a diagnosing psychologist complaining about all the old people coming to him for diagnosis. They were getting along for all these years, what could diagnosis do now? He seemed to be of the opinion that nobody could possibly want such a label and that people in pursuit of diagnosis wanted to get on the dole or somehow cheat or work the system.
I was shocked, especially since I thought the book was about finding and diagnosing the elderly, and supporting older autistics.

I decided the man was not capable of seeing or understanding all of the personal benefits (not monetary) to finally knowing and being reassured that yes, I have different neurology, and all my past failures were not my fault, was good enough.
Evidently he thought we had made it this far, we did not need to bother him with requests. HE was the professional, how dare we self diagnose and seek confirmation.
I got the idea that (like the neurologist I consulted for diagnosis) he was willing to ‘teach us a lesson’ by denying we are autistic, only he, the great and mighty “professionally trained ( most of them in 1980 and many earlier when autism symptoms were barely recognized and contained at most a half chapter in their text books) could possibly give a valid diagnosis. The anger and frustration was palpable.

That particular chapter brought back a lot of distress from my first attempt at professional diagnosis when the doctor deliberately destroyed me emotionally and mocked me and gave me multiple serious psychiatric diagnoses which subsequent diagnosis by a psychologist with 40 years of experience removed from my record, explaining that all my neurological tests did indeed show autism, the neurologist simply did not know much about autism as we know it today. How many of us are going through this? How many have been given spiteful or ignorant diagnoses … its that old complaint about being a square peg being pounded into a round hole.
My diagnosing psychologist said ” to a hammer, everything looks like a nail”. If you don’t recognize autism through training and experience, you tend to give other diagnoses you are more familiar with and which partially fit what you might already be familiar with. OK.

That was incident one and two… I am learning there are many out there who are actually against adults seeking diagnosis. I am learning that many “autism advocates” and even more autism researchers see diagnosing adults as a waste of time.
Many autism advocates believe adults are a finished product and there is nothing that can help them, no reason why we should waste research dollars or any other time and effort on adults. We are already “in the system”.

Some in institutions or care facilities, some at home with ageing parents who might also be autistic and not know that. Some of us are living in group homes, some of us are trying to get on with our every day struggles, wondering why we seem to be such miserable failures where so many experience success, and wondering why, why ,why we can’t accomplish what seems to be so easy for others. Many of us are on the streets with substance abuse problems, many are in jail, many are just barely surviving when, learning of our autism, might instead be thriving.

Yesterday I read a blog I follow, opening the page with interest. I have followed this teaching and researching professional and found his perspective on autism always interesting and liked the analytical way he addressed many issues. I didn’t like this blog topic!

In his blog the professional teacher/researcher pushed his belief that it was a waste to include older autistics in research, in advocacy, in diagnosis, or in finding ways to make our lives better.
He said the funding for autism could not bear the strain and that older adults could not benefit, should not benefit… all should focus on autism in children.

I am not advocating taking anything away from children. I am not wishing in any way to stop funding for this fellow’s own research ,(which I suspect is the primary reason for his blog post, he is feeling threatened in his pocketbook regarding his own work).
I don’t know a thing in personal experience about the struggles for funding, but I do understand that for those who seek , finding funding is hard fought and there is never enough money for researchers in almost any field.
I am seeing the newly formed autism groups fighting amongst themselves for newly available government dollars and suspect there lies “cause” and effects. Follow the money! Who benefits?

I don’t know how to seek out funding, I am a one person campaign, and I am only one person writing a blog and hoping to give talks, run a Facebook Forum or two to give insights into what I am learning about my own autism and that of others. I truly believe knowing ones autism diagnosis can be life changing. I wish for others, the peace of mind and better life that I got when I finally understood about my own autism.

I am no threat, I am simply trying to understand and to learn new ways to live my life of struggles and hoping to help others do the same. I profit financially in no way and any activities I participate in are funded only by me. ( just to make this perfectly clear)

Maybe more individual people raising their voices and sharing information, agendas, thoughts, and ideas will add value to society in ways that need no big government funding .
( consider planting thoughts as seeds in minds everywhere if you are up to it!)
Ripple effect from hundreds of small pebbles thrown into the pond can spread as well as one big rock… maybe better.
I don’t want to be anybody’s enemy.
I want others like me , who spent my first 65 years never knowing why I was such a miserable failure, why I could not do so many things with even a moderate bit of success, why I struggled to have a social life, why I could not communicate with others without making them angry….
I needed desperately to learn about the fact that I was/am autistic. Knowing has made all the difference.
Surely older people deserve insight and peace of mind?
Surely there is room for new voices from another aspect of autism to be considered and entered . Surely we are on the same side as autism advocates???
Or are we?

More tools we can use

Making our own accommodations and finding help

As an older adult, it is very difficult to find support that is available to children and minors. Most insurance does not support specialized autism therapies for adults. But there may be ways of gaining support using therapies and systems already in place.

I think it is very important to know yourself and know your own struggles, strengths and weaknesses. If you have had a neurological study done, you will have some information about what you do best at, and what is hardest for you. I had never given this a thought.

It is amazing to me that so many autistic people have no concept of themselves. They have been so busy trying to survive and mask, interact with their demanding worlds, that they do not understand what motivates them, their emotions, how they see the world, their own thoughts and feelings and beliefs are often shoved to the background as not being essential to whatever struggle is of the moment. The majority do not seem to have any understanding at all about how others might see them. ( I surely did not!).
Many autistic folk don’t see the areas of life they struggle the most with, and usually do not understand why that particular thing is so difficult. Mostly we do know the frustration of not performing as we (or others) think we ‘should’ and we deal with residual guilt and self doubt because of those hidden struggles.

I had been so busy working and taking care of every day struggles I had never really thought about inner things. I did not understand the way I got through my days. What skills I used, what I believed about myself. I did not have a definite understanding of “who I was” or “what I wanted” in anything but the most shallow and immediate way as it depended on responses to every day situations. I have since had time and motivation to think about all of that. I can’t tell you how much it helps to know and value yourself enough to work to really understand the “inner you”.

Things to think about:

What things do I love to do best, and what is it that I like most about them?

What skills do I have that I perform well and confidently?

What skills do I struggle with, hate to be called on to use, fills me with a sense of struggle or failure?

When do I feel the happiest, most satisfied, most at peace?

How do I deal with sorrow, fears, disappointment, emotional pain? Do I need to learn healthier ways to respond?
Do I need to learn to recognize my feelings and express my feelings or learn to react to my feelings in healthier ways ?

Do I struggle with physical things? If so, what causes the most trouble for me?

Do I have anxiety or depression?

Do I have troubling responses to sensory and or emotional overload?

What struggles bother me the most, and do I need or want to learn new ways to deal with them?

Once we see our strengths and weaknesses and truly understand our struggles, we can begin to find ways to ease the struggles.

Accommodations for sensory overload, for example can be found in doing things in new ways. ( replacing bright flickering lights in the home with soft light, using rheostat switches to adjust brightness or dimness, for example) The list is endless of things we can do to help ourselves every day . But first we have to recognize the struggle and the needs.

We may not be able to access “autism therapy” but we can find professional specialists to help us with our social, emotional and our physical struggles.

There are occupational and physical therapists to help us with our gait or our coordination and our sensory struggles.
There are specialists in communication struggles to help us with speech, language, and other communication needs.
There are behavioral therapists who do not need to know you are autistic in order to help you overcome difficult behaviors, fears, anxiety, trauma, emotional recognition and self expression.

You can learn new ways to do things without your teacher/therapist knowing every detail about autism. I have found that many therapists are interested and open to learning more . The ones who listen instead of just tell you what you are or do or feel are the ones who will probably be most successful to work with. You may have to interview or try several before you find one you feel you can trust and who will work to understand and help you, but the things you can learn with a therapist as a coach or teacher for your life struggles will be worth the extra effort.

Insurance often can and will cover a certain number of visits to these specialists. Autism may contribute to your struggles, but your struggles may be better covered in the medical system (at least in the USA) through addressing the individual struggles and finding ways to work within the system which is already in place. (therapy for ptsd, therapy for trouble with walking, therapy for depression, etc rather than addressing autism directly)

Support groups and group therapies can also be helpful for social issues, as well as any special support groups for single issues such as epilepsy, various syndromes often associated with autism, etc… and in some large cities there are even autism support or social groups.

Adjusting to diagnosis and learning all the ways autism can affect us takes a lot of time. Please be patient with yourself and know you are not alone. It is a huge change to look at autism from the side of finally knowing. But knowing our diagnosis is autism, we can finally grow, understand, and take action for ourselves to make or lives better.
Take your time, explore, and realize that things will not change overnight, but gradually. 3 years in, and my life keeps getting better. The struggles are the same, but I am finding new ways to do things, and finding new understanding almost every day. 65 years of not knowing and adaptive changes I made in my life to survive will not be understood or un-done in a short while. It is an ongoing process. You are worthy of understanding, knowing, learning and you are worthy of the best life you can make for yourself .
Knowing will make all the difference!

Summary Report

of my autism diagnosis from 2019.

It finally came in the mail yesterday. I had waited in anticipation for months.

Earlier in the blog I have been telling the story of my struggle for diagnosis. Finally the last bit has fallen into place. It is finished. I have papers now that say a professional has diagnosed me as autistic at just short ( 3 days) of my 68th birthday.

Last visit with the psychologist was the last day of September. He promised at that time to have a written report finished and to me within a few weeks. I waited a couple of weeks before I inquired at the office.. I had not got a bill, I had not got a report from the doctor… I was told that my bill had been sent to insurance and to wait until we heard from them before asking again. I got a call from the Doctor saying he had had a relapse and that he would get the report to me before long, certainly before the end of the year. I felt terrible that he was under pressure to finish this when his health condition is so severe. I waited in growing distress about his health and about gaining the paperwork to finally make myself completely “official”. I did not want to pressure him or add to Dr’s struggles which must be overwhelming and so sad for him and all his loved ones… but I still was anxious about seeing the final report.
There was a fat envelope in my mailbox when we got home from grocery shopping yesterday. 5 pages summarizing both visits and the doctor’s observations, the way I presented myself at the interview and subsequent testing results, all there for me to see in black and white.

There were terms I was not familiar with, and I looked them all up, thought I would repeat them here so everybody can understand them. I knew about ‘flat effect’ but was surprised that he mentioned that I present with flat effect. I had no idea! Flat effect is lack of expressiveness in facial or body movements (reflecting emotions) and can also mean flat tone of voice or odd expression or inflection of voice when speaking.

He said I did poorly on information sub tests… I was amazed at how poorly I scored in visual processing, auditory processing, and he mentioned visual-spatial struggles, motor and sensory struggles.
He said I had ‘cognitive impairment” with these 2 categories. It means I have struggles to understand , something that has been with me all of my life.
I have been aware I had struggles, but the very low scores in both visual processing ( 25th percentile) and audio processing ( 34th percentile) was a bit of a shock… Those scores are very low! I was stunned for an hour or two, and my primary reaction now is to wonder how I have lived life and done as well as I have in spite of those handicaps.

The answer of course, is because I am very good with words. My vocabulary and verbal comprehension came out at 98th percentile… My ability to use and understand words is my real strength.

These things are all things I had understood before and at the time of my tests and diagnosis, but I would like to point out how extremely different my scores were on these tests, either I was quite good, or I was very very bad. One of the primary descriptions of autism’s effects is that it causes uneven neurological development. I’d say this report is a good example to illustrate that description.

I am of high average intelligence and there is absolutely no doubt I am autistic.
I was interested that the doctor said if Asperger’s diagnosis was still in use, that is the category I would fall into. But as DSM 5 does not offer that choice, I am autism level 1. I am autistic

I am so grateful to have my diagnosis through the generous work of the kind doctor; in spite of his failing health and his own personal troubles, he took the time to see my plight and to reach out to me to complete my report. I am to be his final diagnosis. He retired in July of 2019 due to his health, but he offered to work with me for a diagnosis after that. Now the work is complete. He has given me a gift I can never repay. Feeling blessed.