Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.

Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!

Autism Self Love

Autistic negative feedback” baggage” and learning to love ourselves.

Self love is a very difficult concept for me.

I think it is difficult for many other elder autistic people too. The very idea that we deserve anything as an individual has been driven out of our thoughts by negative feedback for too long.

From my earliest memories I recall feedback from others about my selfishness, laziness, thoughtlessness, worthlessness, my failures and my seemingly deliberate wickedness.

Those negative statements about me and my behavior, plus early and continual childhood training as a Christian (where everything is about taking care of others, service to others, selflessness, giving and humbleness) were absorbed early and taken to heart. Having no other guidance and trying to understand the rules for living life, it is no wonder I got so much of it wrong.

In a recent online discussion and subsequent blog ( Was there Love?) wrote thoughts about how most of us in my autistic forums on line felt unloved and unlovable. This is sort of continuing the theme and enlarging on it. What do we do with all of those negative feelings about ourselves and our lack of worthiness?

I got therapy at age 30 due to suicide attempts and depression/anxiety I could no longer control by my willpower alone. The therapist probably had his worst problems in me with my self worth and my inability to stand up for myself.
I did not understand that my thoughts and opinions or preferences had any value. I had to learn that I had worth as an individual, and then I had to learn how to express my thoughts and preferences, set healthy boundaries and above all, learn to take positive actions to keep the boundaries and to take care of myself instead of sacrificing my self in response to other’s demands and desires. I had learned to appease others when I was very small, to avoid punishment and anger. I had to be taught that I was a person in my own right and that it was OK to want things, to ask for things, to have my own beliefs and ideas. Autistic rigid thinking was at work, and I had no idea that I had alternatives. It was terrifying to suddenly be responsible for my self.. I had to take responsibility for my thoughts, my behavior, my ideas, and above all to take action to enforce boundaries to declare myself a person and not a servant, slave, or accessory. ( among other roles I was expected to play )

I was not able to get past the idea that I was at all worthy of being more than a puppet for others to use as they chose.
I ended up having to look hard to find the time in my childhood when I began to learn the negative things and believe them.

I ended up seeing myself between ages of 5 and 8, and being able to find the little girl who was so afraid and who felt so unloved and unwanted. When I was able to do this, ( and remember I can not picture a thing in my mind, so I need visual aids such as photos, models, maps, or drawings to “see” things), I purchased a sad looking child-doll (not a baby!) and put her near my bed so I could see her and think about that child and how I was now able to give her what she had need and not got. I took care of her in my mind and heart. I took pleasure in giving her new clothing, imagining her being cherished, supported, fed and cared for, helped with struggles and given love. I was able to transfer those feelings first to my childhood self, who had missed it all, then to my middle school and teen years and the years of my early 20s.

Breaking though that initial barrier of feeling unworthy took a lot of time, though, and emotional homework. I cried for that little girls a couple of times, but not for long. I had been trained to believe my feelings were not worthy of being recognized and taught to hide them deep within myself. That was yet another skill to learn, to identify my own emotions and to recognize them properly, and to learn to respond to them properly.

Autistic people have many struggles identifying emotions and sorting them out as it is,
our proprioception/ interoception neurological issues being common to most of us.

I was taught to deny my emotions or to redirect them until my whole idea of self was buried deep in what I hid, and never thought or understood that there were other ways and that other people handled these things differently.

It has taken a very long time and lots of hard work to develop new behaviors and to find new ways of thinking. I am certain that many of us, especially older people who have never considered they might be autistic, grew up with similar training… and with similar results.

Years and years of negative feedback from family, neighbors, schoolmates, co workers, spouse and other contacts in our experience have led to our deep self hatred. How could we get things so wrong? How could we fail over and over to perform as expected? How could we mess things up so badly. It was our fault! We were useless, stupid, worthless. Years of negative feedback is a lot to overcome.

When I learned about my autism, suddenly things began to make sense. No wonder I could not do what they wanted me to! I have neurological struggles which they do not have! They expected me to behave as they do never knowing, any more than I did, that I simply was give a different “tool box” from which to do what they expected of me. So amazing!
No wonder I failed! No wonder I could not work to expectations ! No wonder everything was so hard!

Diagnosis changed everything for me, even though the therapy 38 years ago helped me survive and do better in the world, it was not then that I discovered how much my autistic struggles contributed to the difficulty and distress in so many parts of my life.

Here is my message.

You are worthy of respect. You are worthy of caring, you are worthy of love and friendship.

You are an amazing survivor of so many things that were so hard to understand and so difficult to live through, never knowing about autism and about how it has worked in your life to cause so many struggles that others simply do not have.

There are so many new ways to live and to care for yourself, to assure your needs are met and to give your life a richness and fullness you might never have thought you could have.
Please take the time to explore the options, to feed the needs inside of you for so many things you have been missing all these years. Take time to find self care, self comfort, self accommodation, self interest!

If you struggle with self care, I suggest that you think about a stranger you might come across, who has had a very hard life and is full of hurt and feeling un-cared for and misunderstood.
How would you help that person?
Would you punish, shame and chastise them?
Would you be constantly angry at them when they struggled to do things that were difficult for them?
No, I doubt you would.
Instead you might try to help and encourage them, wouldn’t you?

I hope you can look at the lost stranger inside yourself and be at least as good to them as you would be to any other person .

Autism and ageing

Special hazards in ageing are magnified in autism.

I took some time this past summer to help a friend who had fallen and had to have surgery for multiple fractures that resulted.
Yesterday I heard from another friend that her husband had fallen getting out of the tub, and that she had fallen on the concrete walk outside their home.

I fell 2 years ago and did severe damage to muscles and tendons of one foot. It took months to recover full function.

I think you can guess where I’m headed with this one. All of us are over 60 years old, all of us were injured due to falls.

National council on ageing provides some information to put the importance of avoiding falls into perspective.

One in 4 people over 65 will have a fall this year.

Falls are the leading cause of fatal injury in those over age 65.

Falls are the most common reason for being hospitalized in the over 65 age group.

Do I have your attention now?

Autistic people may be at even more risk than the general population because of our struggles with seizures, poor proprioception, general poorer physical care and body condition, difficulties with executive function, and other autism associated struggles.

As any person ages, they become weaker, have problems with vision, slower reaction times, and other failure of our bodies to work as they used to. Health problems such as hypertension, stroke, heart disease, etc all make us more vulnerable to every day accidents.

What can we do to help ourselves live safely and thrive as we get older?

To prevent falls, we can talk to our doctors about our physical condition and medications that might interfere with coordination and balance or perception. We can ask for help in assessing our homes for safety hazards, as many senior programs are available today to help with risk assessment, therapy for balance and coordination, etc. Make sure your eyes get checked and that you have the right prescription lenses. If you have glasses use them, don’t try to get around the house without them!

We can ‘do it ourselves’ or ask family, friends or others to help us assess the risks associated with conditions at home.

Remove clutter from floors and especially hallways and stairs.

Provide safe footing on floors and in bathtubs and showers.
Remove throw rugs and look for trip hazards such as raised thresholds, step-up or down floors of multiple levels. Look for inclined or rough transition areas from one type of floor to another.

Use painted or bright colored tape to mark these places so that attention is called to these trouble spots if they can not be modified. Use traction strips or no slip mats for bathrooms and kitchens, and mark the edges of steps with bright color or white so they are more easily visible.

Be aware of porch and basement floors which can be so hazardous and slippery when wet. there are special textured paints which can be applied to most surfaces to provide better traction and add non-slip qualities to floors.

Wear clothing that is close to your body and does not drag (long cuffs, billowing legs or skirts of pajamas or hemlines of robes, trailing belts of robes, etc can all catch your feet, legs, or hands, and can be caught on projecting knobs, stair rail ends, or other furniture details.
Wear safe footwear.. no scuffs, socks, slippery bottomed slippers, bare feet, or thong type sandals. Shoes with non slip soles are better. Wear them from the moment you get up until you go to sleep at night, any time you are standing upright, wear those shoes !

Install hand rails and grab rails where they can help you most, bathrooms and stairways, long hallways, etc. You might need to use a walker or other assistive devices to help yourself rise from furniture or your bed. Your toilet might need a ‘booster seat’ and/ or bars on each side to make it easier to rise after use. You might even need lift/assist chairs or other electric boosters to help you rise from prone or sitting positions. Always use the hand rails going up and down stairs. Don’t carry things that require two hands up and down the stairs. Find different ways to get those things where you want them to be. Ask somebody to help or carry less at a time. Arrange things on one level as much as possible to keep from having to make trips up and down for things such as laundry, the freezer, or to care for pets etc. And be aware of pets around your feet as you walk or go up or down steps. Even if they were sleeping in the other room a moment ago, they will likely follow you closely if you move. ( you know that!)

Make sure you hide cords from lamps and other electrical devices so that they are not trip hazards. Make sure your pathways are lighted completely, no walking around in the dark! Use night lights everywhere you can. Make sure the pathway to the light switches in each room are clear. You might even use glow-in-the dark paint to make the switches easier to locate in the dark.

If you are aware that you are losing muscle tone or getting weaker, you might be able to get therapy or be prescribed particular exercises to do which will improve strength, balance, flexibility and grasp.

If you think this doesn’t apply to you right now, realize that it surely will apply as you get older. Think ahead about what you can do to ease the risks of injury or death because of falls, then please take action.

Autism Diagnosis at age 68

I will be 68 tomorrow…..what a great gift!
I told my husband when we were leaving the office that after our wedding day and the birth of our children, this was perhaps the most significant day of my life.

I am still processing the fact that I now have an official diagnosis . I have autism and there is no doubt at all.

Spouse and I presented ourselves at the kind Doctor’s office two days ago.
There had been many last minute doubts about whether the appointment for diagnosis would actually happen.
Dr’s fragile health was a huge concern.
We did not communicate well, and missed making contact to confirm the appointment. A last minute phone call found somebody at the appointment desk although the office was already closed.(phew!)
They called the Dr and he called us back to confirm that if he was able health wise, he would come on Monday.
We went downstate to the Detroit area on Sunday afternoon and checked into our motel. Reported to his office at 9 AM , and after a wait (tension building for me! My husband was so supportive!) of about an hour, we got the evaluation under way.

THE PROCESS
Since the kind Dr is a psychologist and not a neurologist, the process of sorting out my autism was quite different.
At no time was a clerk or helper involved, it was almost all discussion and questions/answers.
A few short tests were given to me personally, by the doctor.
I was asked to sort blocks to make patterns and given some oral questions to answer.
I was with the Dr for a total of 6 hours, and my husband was present for almost half that time.
We both answered questions and Dr taught us through explaining as we went, after I answered a series of questions, he explained what he had been looking for in my responses. Each time he explained how my responses helped show I have autism.

To my surprise, he told us he had been very sure of my autism after our initial exploratory appointment in late March.

THINGS I LEARNED:

Dr’s first impressions of me regarding autistic behavior came through the way I spoke, voice inflection, use of words, etc.
He has 40 years of experience, with autism being the majority of his practice. He says he has grown to recognize the distinctions in the way autistic people speak/ use words. Dr says only about 30 percent of people with autism speak.
That is very sobering. I feel so lucky. Words are my only strength.
Feeling so sad for my autistic brothers and sisters who don’t have that gift.

The evaluation appointment was to define my strengths and weaknesses.

Dr told us that a hallmark of autism is uneven neurological development as we grow. If our neurological development lags in certain areas, it is a sign we may have autism.
I never crawled, I have always been clumsy and awkward physically.
I was reading at a much higher level than usual at age 4.
Those are all examples of uneven development, where things that should have developed (neurologically) first failed to, and where other things developed too soon.
Testing confirmed the same pattern.
I have a couple of very strong areas, and several weak ones.
Typical (neurotypical or average) results would have shown a smooth line of development in most areas.
If my test results were put to a graph it would have peaks and valleys with few smooth lines.

Dr remarked that I have a great vocabulary. That was the highest point on my graph.
My weakest were visual processing and processing of the spoken word. I have good short and long term memories. The previous neurological tests I took with such traumatic “diagnoses” actually reflected the same peaks and valleys, strengths and weaknesses.

BUT the kind Dr pointed out, the interpretation the neurologist had put on the results was wrong. Dr pointed out one by one where the neurologist’s test results pointed to autism, how the results had been misinterpreted probably due to the neurologist’s complete lack of experience in work with autism, and lack of knowledge of information that has been known regarding autism in the past 15 to 20 years. (The neurologist simply had never learned more about autism since his college days of the early 1970’s).

One by one, the points made on that neurologist’s report and the negative diagnoses I was given, have been refuted.
How validating and how uplifting, after the devastation to my thoughts, ideas, concepts, and self identity at the time of that first attempt at diagnosis.

Dr pointed out my deficits and my struggles clearly, and showed how the neurologist had missed those struggles/deficits as well.

I asked so many questions and got such clear explanations!

Dr explained that he sees similar speech patterns and use of words among his verbal clients with autism.
He looks for patterns of uneven neurological development.

Most surprising of all to me was his statement that he watches for hints that clients are gathering details, that the smallest details are noted by us and that we are very interested in collecting information regarding those. He showed me a portfolio of art by his many clients over the years. So many of these drawings were made up of small and very specific details! He says that by observation he can see that those of us who are autistic are gathering information regarding details all the time. Dr says it is obvious in interacting with us. I plan to begin to watch the others I interact with to look for this behavioral clue!

He asked me to draw human figures, and commented about my openness and vulnerability. I got the idea that this was also often a characteristic of autism.

Doctor discussed in detail how autism is tied to anxiety, depression, and compulsive behavior patterns. I will probably write about these things in more detail at a later time.

I can not express my gratitude enough toward this amazing, kind and extraordinary man!
He gave so much of himself to us in taking time and so much effort in spite of his very serious illness ( and after his official retirement ), to help us by giving analysis and diagnosis, spending so much time helping us to understand how and why he knows I have autism.

A note on one little twist of life, the person who recommended Dr to me was the first adult he diagnosed with autism. I will be the last.

Dr had advice, too, for how I might proceed with my desire to help others in the elderly populations to learn about autism in themselves or somebody they care about.

I will be taking some time off to sift through the overwhelming emotions and whirling thoughts , trying to develop a plan and preparing to go forward with the next step.

Feeling so grateful for this generous and compassionate man who reached out to us and provided the final information and explanations I had sought for so long.

Autistic Solitude

I want to be alone!

One characteristic of many autistic people is the desire to spend time alone.

Not everybody who is autistic is like that, but it has been noted by diagnostic professionals as something that can be used as a clue to diagnosis.

As a child I spent a great deal of time by myself, even though surrounded by eager siblings who sought a playmate. I did not play the same way they did, and often pleaded with my mother to keep them from bothering me.

I gloried in my first apartment at age 21… I could play music or read, walk my dog, cook, sleep, eat, take solitary walks,bathe in privacy, all in my own time and in my own way.. and I was responsible only for myself and my dog. Social interaction of the assembly line factory where I worked at the time was enough. I had that mile long walk or bike ride to work to help transition from work to home, and spent long hours in complete peace. I have only lived alone for about a year and a half of my entire (soon to be 68 years old ) life. I remember those times with a bit of longing sometimes.

I think the desire to be alone ( for me at least) stems from the overwhelming distress caused by uncontrollable sensory input and especially from social demands.

Socialization is very difficult business
It takes a long time for me to digest and make sense of the things people say and do, figure out what they want, understand their motivations and their desires, and respond in a manner satisfactorily.
The call to respond properly and immediately to constant demands to react to other person’s words is anxiety producing. Acknowledging barely perceived emotions and trying to respond to one’s correspondent’s evident (or sometimes not evident to me) desires for certain responses ( provide empathy, console, laugh at funny comments,provide encouragement or validation, provide information, assent or deny or negotiate solutions to constant requests or demands, etc).
These demands, even one of them at a time, are simply very hard work for somebody to whom none of those things comes naturally. It can be exhausting if carried on for extended periods of time. An hour’s conversation can put me into emotional and informational overload for a week!

I need time alone to rest between bouts as much as an athlete needs to rest before the next set of trials or demands to perform.

Sometimes it takes me a very long time to process interactions, to search for missed cues, to sort information gained, try to understand motives and what was being expressed often between lines and remaining hidden to me. I need time. I need time alone and undisturbed to make sense of my world and to protect myself from all the things that go too fast for me to understand them. I think it is a self protective behavior to protect against too much sensory and or emotional overload.

I seem to have developed a self protective sort of radar.. (hyper-vigilance perhaps). I always keep a sort of sub- conscious guard up whenever I am in the company of others. This means when I am in company of even one other person, no matter how benign or congenial, I am wary and worried about whether I will be able to cope with any interaction with that person. I simply can not let down and be unguarded. The only way to be myself, completely unguarded and relaxed, is to remove myself and assure I am safe from social pressure of any sort. This means my best times are spent alone on the trail and the lake shores, or in my personal spaces in my areas of the garden, or in the safe places I have designed with my spouse’s support inside the house and behind closed doors. Even then the sight of another person on the trail or a knock on my door can shoot me right back to vigilant state. Will I be able to respond correctly if somebody asks anything of me? Will it be the right response?

I became aware of this behavior pattern when my first sibling was old enough to follow me around and try to get me to do things I did not want to do.. about age 3-4. I remember resisting when my mother took me suddenly from any activity and immediately began another activity with me. I think it is part of the processing struggles in my makeup which simply require more time than “normal” social interactions are performed. I need a place to be safe from the constant demands of the world. Over time I have developed the desire to be alone as a sort of defensive mechanism to prevent sensory/emotional overload and allow myself space and time to process recent interactions.

My greatest needs for alone time surround things that are or will become stressful… a vacation, travel, extended stays of even the most beloved family and friends, weddings, funerals, reunions, and right now most especially the impending second visit to the kind psychotherapist I saw in April in another attempt to finally get “official” medical diagnosis.
I will want to be alone before and after this event, perhaps next to my own marriage day, probably the most significant single event of my life since I have been born.
I am acutely aware of my building anxiety. I will probably not want to speak to anybody for days after, while I process, digest, and sort any information gained and I try to understand the significance of the questions asked, the feelings that all of this digging (even though by a kind person I tend to trust) of a stranger into my deepest thoughts and memories… I will definitely want to be alone.

I am not sure what other autistic people gain by self isolation, this is my own perception of my own motives.
I hope readers will not think I am saying it is even remotely the same for a single other autistic person. I have not found any documented studies that explain the autistic person’s desire to be alone.
I have seen no more printed information than speculation of a few psychologists, regarding what goes on in our (autistic) minds that makes so many of us seek our selves in times alone.

Next Phase in Searching for a Diagnosis

It took some time to recover from the shock of the first encounter with the neuro psychologist who claimed to have experience with autism (or his office did).

I decided to go back once more to the Autism Society of Michigan (not an insurance sales unit but the heart and soul of autistic persons united to help other autistic folks. ) There in the group was a woman who had been diagnosed as autistic as a young adult.

She shared the name of her psychologist and I felt encouraged when I did a little internet search and found reviews from current and former clients who appreciated his understanding of autism and who were pleased with his help in their situations.

I emailed his office expressing a desire to set up an appointment with him, and was told that the Dr would contact me soon.

NOTE: This was the step I left out in setting my first appointment… I did not actually talk to the Doctor himself! I point this out specifically so that you can benefit from my experience. I might have caught the lack of interest or expertise of the first doctor, and understood that his first interest was not the client.

If a Doctor will not consent to a pre- interview or a phone consultation, I will now and forever read that as a warning. Patient/Client and how best to serve is not a priority.

When the doctor called it seemed that he understood me and that I could understand him without struggle, even though phone conversations make me fret.

We set up an initial meeting, deciding from the call that he might be able to help me, and had enough interest in my challenge of being so old and thinking i must be autistic, to go ahead and try to find out.

The appointment was set for only a week later! more soon.

Finding out

Once I suspected I was autistic, I began to research online resources with special interest in older adults with autism. I found some surprising statistics. The CDC estimates today from studies done in 2015 and published in 2018, that autism is present in 1 or 2 out 59 people. Of those people 3 out of 4 will be male. Autism was originally described to be only found in males, and it is believed by many that the diagnostic criteria may need to be changed to include traits of autistic women, which are being found to differ from those of males. Autism diagnostic criteria (DSM) as it stands today has been used only since 2013, with varying other tests being used before that date. First time Autism was on the list for diagnosis as its own diagnosis in the USA was 1980 when it was listed as “infantile autism”, removed from its previous category under forms of schizophrenia.

My biggest question : Weren’t there autistic people before it was officially recognized and sought as a diagnosis beginning with infants in 1980? What happened to all the adults ? Autism certainly didn’t just ‘appear’ .