Things I have learned

This year has been one of personal growth.

I started this blog in January, thinking I could perhaps keep track of the things I am learning about my own autism and about getting older. I had decided that I wanted to share information about the things I have been learning just in case there are other older autistic people like me. At age 66 I thought I was most likely autistic, by 67 I was sure, but I did not get an “official ” diagnosis of autism until I was 68.

Everything in my life has changed due to my new self understanding and my knowing that diagnosis of autism. My disabilities are still there, I have the same struggles and the same weaknesses/ the same strengtsh. My unusual neurology has not changed, I was born this way, I will die this way.

Today I am looking at myself in new ways. I had not looked at myself or understood myself at all in the years before discovering my autism. I had learned to adapt my behaviors for survival and coping ( so very poorly with no understanding) and I can congratulate myself on living to the age of 65 without the knowledge of my autism. I am definitely a survivor.

Life is finally understandable with my knowing about autism. I can look back and see my traits through the window of autism and know that my failures, misunderstandings, pains, and sorrows were all affected by my autism and that nobody in those days knew or understood about that, any more than I did.

My life until diagnosis was an anarchy where autism ruled behind the scenes and nothing made sense because it was hidden. I was so busy struggling every day to understand what was happening, why, trying to keep my fears and anxiety and depression in check, and i went along putting out situational fire after fire. I did not have the tools of knowledge or the time for introspection.

Now retired and with much more time to spend on research, doing some soul and self thought searching and finally finding autism, I am anxious to share what I have learned and to attempt to share with other old folks the insights that set me free from all the years of self blame, misery, anxiety and desperation.

I was able to change the pattern because I could see how autism had worked in every corner and cranny, every dark and desolate place, every unforgiving and painful moment of my life.

It has been such a relief and such a freeing feeling to know and understand. I am not to blame for the way I was a spectacular failure most of my life. I am autistic and I did not have the tools or self understanding to make the adjustments I needed for a healthier and happier life.

Starting in January with this blog, I have tried to open the lid on the “toolbox” and to explain to myself as well as others how autism has affected me, how it works in others, and how I can have healing and better living now that I understand my autism.
I hope this blog has been useful and that it will help those new to autism at such a ripe old age to understand themselves and their history, their lives today, and to help improve their lives going forward with new understanding.
I salute you all as survivors, and encourage you to forgive yourself, take care of yourself, and to understand that it is not your fault, and you are definitely not alone.

What next? Now that I have my professional diagnosis, I can proceed with plans to reach out to other elders in my community, to raise the awareness of autism in the lost generations , particularly focusing on those who are of the “baby boom” generation. As elder autistics retire and need more support, I believe it is urgent to have understanding of their autism in order to provide safe and satisfactory conditions and to alleviate suffering and struggles whenever possible.
With self understanding we can become advocates for ourselves and others who are trapped in cycles of pain which they don’t understand and which might be helped with knowing about their own undiagnosed autism.

I will still write here about how autism can affect us and continue to try to explain the things I am learning. But I will focus locally on finding the 200 or more undiagnosed autistic people here in my own area. ( number based on population of people over age 20 in my county and city).
Feeling optimistic.

Details

Its ALL about the details!

Recent studies have shown the main differences in patterns of thinking between those who are “neurotypical” and those who are autistic is a matter of which comes first, the “big picture” or the details.
Neurotypical people ( NT) tend to notice and take hold of the general idea of any concept and then fill in details “as they go”. Generalization first, specifics to follow.


Autistic thinking patterns generally are to gather details as if they were clues and assemble them to create a complete understanding of the concept or idea.

Before we proceed we want to know as much as we can about it.

How does this work in every day living and communication?

I struggled with general concepts as a child. Vague non specific directions gave me fits!

Clean your room! (autistic thinking asks, ” how clean must I get it, clear it of clutter only? Sort the clutter or just get it out of sight in a closet or a drawer? Strip the sheets and take down the curtains, wash the walls? Wash the windows? Vacuum, dust, polish??? “)

Do the laundry! ( autistic thinking asks, ” just my laundry or the whole family’s? Just start a load or spend the day doing all of the stuff in the piles, drying, folding putting it away? Sort by color? Sort by fabric? Sort by family member? Can I put this set of dad’s work overalls in with mom’s best tablecloth?” )

Go get dressed! ( autistic thinking asks, ” play clothes, work clothes, dress up clothes?, are we going somewhere? What shoes to wear? Why can’t I find my favorite socks? I can put on my play jeans under my dress so I can be ready for anything! ” )

Walk the dog! ( autistic thinking asks “where should I take him, back yard, around the block, to the park? Should I use the long leash or the short one? How long should I walk him? Do I need my hat, coat and gloves? Should I bring baggies and his bottle of water and his dish?”)

There is a lack of understanding in the NT mind, that we NEED those details. It is not enough to state intent, it needs to come with specific information. Especially as a child with little experience in the world, statement of intent does not tell us what the expectations for each act we are told to perform are, nor does it explain how to do these things!

State intent, then be as specific as possible about expectations and give as much information as possible to any directions. This method still works best for me today at 68 years old.
As a young child, had to be taught in small and very specific steps to know how to clean each area of the house, how to do the laundry,how to iron each piece of clothing or linen, how to wash the dishes, what was expected of me when told to clean my room, how to empty waste baskets, take out the trash, How to use the vacuum, each specific chore had to be explained in detail.

Things that were evident to my NT siblings through observation were not obvious to me. Knowing today that I have very little neurological ability to process moving visual input, this makes more sense.

This pattern has continued all my life. If my husband says he wants to go to shopping, I need to know where we will go, what time we will leave, what are we buying?
If I must travel, I make lists of things to bring and I look up my destination on the map, view it on satellite programs, write down directions on how to get there, plan time of departure and arrival, think about where I will stop for rests, gas, and any other stops I might want to make.

Going to a meeting or program in town involves the same planning, how do I dress, what do I bring, how long will I be there, How do I find the place (mapping and perhaps even a day before recon if I am afraid i won’t find the place in time for the planned activity) Who will be there? How many are expected? Will there be food? What is the schedule for the program? Where will I park? These things may be intuitive to some, but they are conscious questions that need answers for me to be comfortable to proceed.

If I plan a new project or want to learn a new skill, i will seek information ahead of time on the internet or in books, and read about “how to do it”. I can not watch videos or listen to podcasts to get the information. Once I learn all I can about the skills needed and the correct ways to proceed, I am able to carry out most of these projects with little outside help. But if somebody just told me to simply ‘do it’, I would most likely not be able to proceed. I have to get all the details, line them up, and then I feel confident I understand.

I am often chided by others for not being able to “go with the flow”. I am aware that I irritate others by asking all of the questions I need to know to assemble a complete idea of what will happen in my head. I need all of those details in order to understand.

My husband amazes me. He could watch anybody do something, then do it himself.

I know he is NT because very little has to be explained to him. He sees what has to happen and is able to complete the project using things he has learned by watching and listening.

One of the best things you can do to improve communication and understanding with an autistic person is to state intent, then explain in detail, using as much detail as possible. Do this in every day activities, no matter how small they seem to you. It might be annoying to you to have to do this, know I am not trying to be a pain, but that I need to ask questions in order to understand. It might take extra effort on your part, but you will usually gain willing cooperation if I understand the “big picture” in any scenario.

This is especially true if I am in a medical setting, or in any new place where I am expected to comply or cooperate with issues that are new or require some form of participation on my behalf. Please state intent and explain what will happen in as much detail as possible.


Answering the questions of ” What, when, why, who, where, how?” makes my world and my place in it easier to understand, to negotiate successfully, and to perform satisfactorily.


Animals, Autism, Self Injury

Can we learn anything from studies?

One of the truly distressing behaviors encountered in some autistic people is the problem of Self Injuring behavior.
This can range from skin picking, hair/eyebrow/eyelash pulling, chewing fingernails and fingertips, to biting oneself, using sharp objects to self injure, head banging , throwing oneself against sharp things such as corners of a wall or a table edge. It can include self cutting, burning, piercing, and multitudes of other behaviors which can cause permanent bodily damage.

You may be surprised to learn that self injuring behaviors are not confined to autism and certain mental disorders in humans. Animals can and do practice very similar forms of self injury.

Early studies on primates and zoo animals, as well as domesticated animals seemed to show that the worst self injuring behaviors were to be found in confined animals. (Labs, zoos, farms, kennels, and in animals kept as pets where close confinement and lack of social interaction with peers was a common condition).
Some studies at first blamed the behaviors on conscious use of self injury to gain attention. One earlier study said such behavior should be completely ignored and not rewarded by offering interactions, distractions, or other attention or show of concern.


Many studies since have put blame on unnatural environment, poor socialization or lack of ability to socialize naturally, lack of enrichment of environment, and some more recent studies are finding that brain chemicals are skewed in many cases, the subjects being studies being found lacking in dopamine or cortisol.

Many self injuries seem to be linked to frustrated sexuality and frustration of natural social/sexual behavior patterns in captivity as opposed to what would exist in the natural environment, and were assumed to be replacement for thwarted natural sexual behaviors.

Exposure to stress seemed to be involved and often made the self injury patterns worse or more frequent.

Forward now to studies being done in the past and currently involving human self injury.

Among diagnosed children with ASD studies using reports from their doctors said 28 percent of the autistic children in their care had some form of self harming behaviors.

Studies involving adults who were capable of self reporting showed that about 50 percent were actively or presently dealing with self injuring behaviors.

Studies of lower functioning individuals in care facilities show up to 60 percent struggle with self injurious behaviors.

Studies with both animals and humans have shown those who self injure often have lower levels of dopamine, norepinephirine, or cortisol.
Some studies show that certain chemicals used for sedation or anesthesia, or other purposes can induce self injuring behaviors.
Animals coming out of surgery seem to have more propensity to self injury immediately after. Studies pointed to the chemicals used to anesthetize the animal, as self injury was more common when certain anesthetics were used, than with others. I have not found comparative studies involving anesthesia with humans but I am wondering if the many calming drugs given to people who have anxiety or other behavioral problems might not be involved in some way for humans as well?

One very interesting human study tied certain self injury patterns with different known genetic disorders or syndromes. Named in the study as having recognizable tendencies to certain specific patterns of self injury are Lesch-Nyhan, Cornelia DeLange, Smith Magenis, and Prader- Willi syndromes. There may be others!


Self injuring groups studied showed overall lower verbal abilities, fewer self help skills, low mood, poor social interaction, higher levels of impulsivity, and higher levels of stereotyped, compulsive, or repetitive behaviors.

Another study showed the worst self injury behaviors were observed among those who had more severe sensory impairments, and among those who had physical illnesses associated with higher levels of pain.

I am not able to draw conclusions from these studies, but it seems evident to me that they provide some very strong clues which need further investigation.
Chemical, genetic, and environmental conditions all seem to play a part here. What will we learn from further studies?
Are there clues here to actions we can take to help those with Self Injuring Behaviors today?


Autism : Teaching compliance

Making the perfect victim

One topic that keeps coming up on the autism discussion forums I belong to is how many of us have been victims over time.
We seem to have suffered more than average rates of crimes ( simple physical and or sexual assault, fraud, intimidation, manipulation for profit, use and abuse by those we believed were friends or even domestic partners, on and on).
One of the most asked questions is “how can I know when people are taking advantage of me, how do I figure out if what I am experiencing is abuse?”
What makes us so vulnerable to this sort of use and abuse?
I believe it is a number of factors.

One of the characteristics of autism is its “black and white thinking”. We take things literally and often do not see what is “behind” a statement or a behavior.
If we think we see a duck, we do not suspect it is really something else.
What we think we see is what we believe.

We tend to be anxious to find approval and friendship, and romantic love. ( Isn’t that human nature?)
But it seems we are not equipped to see (hidden motives) behind the face that is put on to gain our confidence.
We take things literally, so if my man friend tells me he loves me, do I even suspect he does not, but has more nefarious purposes? (gender used in this case is just an example and does not reflect that this can and does seem happen to all of us regardless of gender). Manipulative use can come from people we see as ‘friends’ , buddies from work or other situations asking for money, asking us to give them homes with us, help them do things, even directing and or pressuring us to do illegal things, either innocently, or knowingly.

I know one thing that made me very vulnerable was being taught to be compliant and obedient. This was the style of child rearing practiced in the 1950’s and 60’s. Kids were meant to be seen and not heard, they were to be polite and obedient to adults, neighbors, teachers, the minister, the folks in the stores and other public places. We were taught unquestioning response to adult demands.
I was punished over and over for asking why, although I was looking for clarification of intent or purpose and not questioning the actual commands that were given to me.
I was taught to sit still, to not speak unless spoken to, to be in all ways at all times a “nice little girl”, to be a “lady”, and society’s expectations for women to please men was role modeled for me.
I was taught to seek approval in everything I did, and to wait for directions, not to take my own initiative, and to in all things be subservient, looking for approval.

This ties in to lifelong struggles to appease any person I come in contact with. I must strive to please every person I meet. I learned this behavior as a very young child and it was the safest way to live in my world.
That approval was the only way I was able to keep myself safe, if I did not have approval and permission or direction from somebody else more powerful (and EVERYBODY was more powerful) then I did not proceed, for it was not safe to do so.

Thinking back, I realize I had learned these lessons and this behavior before I even entered school, and subsequent experiences throughout my childhood repeated and re-enforced the lessons.
I had learned not to be self assertive under any conditions, to wait for instruction , to seek approval. I was not allowed to get angry, and was punished severely for any angry or resentful behavior.
Combine that with my autistic lack of insight into human nature, lack of understanding of social and other interactions, lack of life experience and lack of explanation for any factors beyond ” Do it when I tell you to, and how I tell you to” … you can understand how I was ‘set up’ to fail. I was raised to be the perfect victim, and this is what I became.


Flash forward to today’s ABA , where kids are taught the exact same things to make them “socially acceptable” and “cure” their autistic behaviors.

They must endure adult pressure for extended periods of time, are taught to seek approval, act only when told to act and in the way that those adults choose, how and where they choose. This is performed for up to 40 hours a week usually before the child enters school.
ABA kids are taught to accept touch from those in power over them, uncomfortable, often sudden touch in the form of tickles, hugs, etc etc and taught to endure and act to please the controlling adult.
They are taught to do without protest the rote projects they are faced with performing.

ABA kids are taught to perform for approval or ‘rewards” such as a bite of a favorite food, much as dogs, or circus animals have been trained for years.


What will become of them when they are faced with demands from society, from classmates, from unreasonable bosses, co workers, high pressure sales persons, or demanding manipulative devious “user” adults who demand money, sex, or other unreasonable and unhealthy behaviors?
Will they have been taught to discriminate, or will they blindly try to appease those sorts for approval?

I can tell you which behavior I chose and used until a suicide attempt at age 30 sent me to therapy, where I learned how to become healthily self assertive.

I did not know there were alternatives to appeasement behavior. I had to be taught!

38 years later and I still struggle most days with appeasement behavior.
( for more information look up” freeze, flight, fight, fawn” patterns of behavior.)

See also “learned helplessness”

Are these early diagnosed children any better off than I was?


I can only hope that they eventually receive close attention to teaching about human interactions, how to spot people with devious intent, and are taught as soon as possible to become self assertive and to express their own personal boundaries and needs in a clear and healthy manner.

I greatly fear that in most cases this won’t happen.


There are so many autistic people in positions of being used and abused, we do not intuitively suspect others, it is something that needs to be taught, this self defensive questioning of other’s motives.
I have always said I had to have things explained that seem to be obvious to others.

Here above in this blog is a very good example of my spoken perception.


I wish somebody had taught me those things early on.

Autism sensory processing

VISUAL INPUT what do you see?

I knew years ago that visual input was upsetting to me. Long before I knew about my autism, I knew I could not handle moving images or images of violence, suffering, or anything emotionally significant.
Seeing those sorts of images, whether moving or still give me emotional reactions that stay with me to re-live the feelings they evoke repeatedly and randomly, never knowing when thoughts and memories of those images will haunt me and torment me.

There is nothing I can do in most cases to alleviate the horror of these visual images once I have seen them. I learned as a pre-teen to avoid the nightly news broadcasts. The war in VietNam was the focus of almost every broadcast, the bloodier the better.
Repeated images of the Kennedy assassination when that happened, standards for what visual images were allowed on TV , newspapers, magazines, etc changed rapidly in the 1960’s and anything gruesome or horrifying was usually the opening story. “if it bleeds it leads”.
Not only do I struggle to understand moving visuals and always have a processing “lag”, whether it is something on the screen or a photo or actually unfolding ‘in real life”, but I find I am filled with a rush of emotions in the graphic visual input which seems as if it has no place to go. I experience horror, fear, angst, all the intended emotions meant to be drawn out by these images and the experience is immediately and continually emotionally overwhelming. I am battered emotionally and continually when I allow myself to be subjected to such images, whether real life images or scripted fiction being enacted. I choose to avoid this experience whenever possible.

I can not sort and file the experiences and tell myself “it is over” “It is just a movie” or use other filters which most people use when they have visual input. Those filters for me have never existed.


Add a sensitivity to sounds of suffering ( screaming, crying, pleading, anguish and pain) I find many tv or movie/video experiences too painful to subject myself to willingly.

Even in day to day life, I have always struggled with visual demonstrations of “how to do” from teachers, medical explanation videos, employers visually demonstrating how they wanted the work done, etc etc etc.
Give me a booklet with line drawings and printed explanations to illustrate these things and I will understand.
It all happens too quickly for me to sort the steps and expectations, listen to instructions and see what is being done… “are there any questions now?”
I always annoy the presenters of these things. Yes, there are plenty of questions.

It is as though I don’t have a working filter or a thermostat for the emotions aroused by seeing such things and hearing them.

My first memory of this effect is when I was taken to see Disney’s original Fantasia and my screams of fear at the skeletons in the bald mountain scene and the trouble Mickey Mouse was getting himself into (NO Mickey, NO NO!!!) and simply being “shushed” because it might annoy others around me. I was about 4 years old. I have been able to protect myself from such distress since I became old enough to choose not to participate in activities that are likely to lead to such distress.

It is said that visual processing is a strength for most autistic folk and that being able to visualize is our greatest ‘gift”. Not for me, and maybe not for many of us. I can not visualize a thing!
Don’t let generalizations lead you to forget autism is experienced on a spectrum, and not one of us is the same.
Is my reading considered a form of visual processing? Perhaps, but it is at my pace and although I rely on seeing the words to read them, my “inner brain” speaks the words and I have always thought my reading experience was more sound oriented (the sound of the words in my head to myself) than visual.

Perhaps my inability to visualize in my head has much to do with the processing of visual things. I do not recognize people out of context, this includes in movies when there is a change of scene and wardrobe. (who is that guy? Oh, that’s the hero of the story?) I am repeatedly made fun of because I recognize none of the movie stars, tv heroes or other popular characters. ( OK, I just realized I do still recognize Mickey).
I do recognize voices after listening to them just a few times. I surprise my tv watching husband when I announce that the voice belongs to X actor or actress… I am usually right. Can’t recognize a face to save my soul, but give me a voice.

Sometimes I imagine myself in a nursing home at some point (one out of 3 people eventually spends at least a month in a care home before end of life) and can only be horrified thinking about the managed use of the common room several times a day , and me being forced to listen to dozens of people, a blaring music intercom and a TV turned up to accommodate those who are hard of hearing. If I am unfortunate enough to be unable to move myself, I could be plunked down somewhere facing a TV with horrible images, screaming and crying, in a room full of din and things I would never choose to see, people I would ordinarily hide from, and subjected repeatedly to this…. There are no ways to describe the resulting misery. Perhaps you can imagine for yourself.


Edited a few days later to add more content.
Visual processing issues can also cause much distress in everyday living. One often reported distressor is light that is too bright, light that flickers, light that is the wrong color or too direct, too focused, too diffused. Think of all the ways we see light in our day. I get motion sick due to the rapid changes in light/flicker effect/ inability to process moving images. I can get sick in a car, or I will get sick watching any rapidly moving images on TV, Movies, Videos, and video games. I always do better in a vehicle when I am driving, perhaps because I can correct the motion of the vehicle and affect it in a direct way, or because I am more in tune with the motions of braking, turning, stopping, slowing down or speeding up and can prepare myself for such things and correct for them. Wearing very dark wrap around sunglasses seems to help keep shadow flickers from affecting particularly my peripheral vision, and I am sick a lot less now that I finally learned that trick.

Visual struggles and issues with bright light, colors, patterns, and shadows can cause much distress for those unwillingly subjected to certain conditions.
In many cases, those of us who are prone to seizures (about 30 to 60 percent of autistic people, depending on who is reporting the issue) will react to flicker and rapidly changing visual input by seizing.
Reports of meltdowns caused by the flicker of a fan throwing shadows repeatedly across a room, motion observed through a window and resulting reflected light changes, etc. are frequent. The affected person might not even recognize what is distressing them.
If you experience distress when you are in certain situations you might be able to seek out causes when you recognize problems with light and visual processing. Many autistic people wear sunglasses or colored lenses which seem to help change how we process visual input.

What do you hear?

Sensory input and autism HEARING

I thought it might be useful to discuss sensory struggles in a little more depth.

I want to stress that sensory struggles for each individual with autism will be different.

It is probably understandable that I have no idea how my own experiences compare with those of ‘normal’ or NT “Neurotypical” individuals or others with autism.
I can only report my own experiences, explain them to the best of my own understanding, and let you decide for yourself if your struggles are the same or different.

I woke up this morning feeling a bit slow and did not immediately get out of bed. Instead I let myself wake slowly and soon became aware of the sounds surrounding me there in the dark.

I could hear my partner breathing deeply and hear the gurgle and rumble of his tummy , the sound of his body against the sheets as he moved and readjusted his position under the covers.
We are having a small storm here.
I could hear the rush of the wind outside in gusts that caused sounds through the branches of close by trees and the hedge near our home. I heard the sound of multiple twigs and small branches hitting the roof, the window, and the side of the house (each sound is different but sometimes they are also simultaneous). Each sound burst when the branches hit the house is sudden and slightly surprising, random and not rhythmical.
I could hear the roar of the lake a block and a half away. The sound of those rushing high waves pounding the limestone and sand is very distinctive.
I heard the water in the radiators rushing and gurgling, I could hear the clicking of the switch on the boiler thermostat turn on and off and could hear the pump initiate itself to push the water through, it hums.
I could hear the low drone of the dehumidifier in the basement.
I could hear the ticking of the clock on the dresser.
I heard our refrigerator running and then shutting off.
I heard the traffic on the highway intermittently when the wind was not gusting.
I heard the sound of the car belonging to the guy who delivers our newspaper every morning. I heard the newspaper hit the porch.
I heard the pie tin placed as a squirrel baffle on the neighbors bird feeder flexing and making tinny noises in the wind.
I heard the dog walking restlessly from room to room and the faint squish of her paw pads, the faint click of her toenails on our laminate floors, and her sighs.

I could hear faint very high ringing in my own ears, ( tinnitis, something fairly new to me and quite annoying) my breathing and for a short while the thudding of my pulse in my ears.

After a few moments I got up to start my day. It was almost 4AM and most people would say the house and even the city was dead quiet at that time.


I am completely unable to edit what I hear at any point in my day.
When I hyperfocus on a book I am reading I am not conscious of any outside noises and people must touch me to get my attention even if they are standing in front of me speaking my name or yelling across the room. I do not do that deliberately, it is something that just happens when I read.

Now think about the sounds I will hear during waking hours and when I go to any new place.


Think about when I was a small child at school and trying to sort out important sounds from those which had no meaning or significance to the learning and schoolroom.
I was surrounded by other small children, each of them snuffling, squirming, scratching, giggling, whispering, toe tapping, finger thumping, hand clapping, playing with pencils, paper, erasers, crayons, scissors, and the sound of the teacher’s voice, the sound of 30 pairs of little feet on the floor, the sound of chalk on the blackboard, turning pages, school bells, the intercom announcements, sounds of chairs being pulled or pushed into place, walking rustling , calling, talking, whispering others as they all passed through the hallways to the buses with motors running just outside, the sounds of traffic, passing airplanes, mowing or snow plowing, and I could list so much more. How is that little autistic kid in the class NOT going to get into trouble for “not paying attention”… and those are just the sounds.

I have learned to sort significant sounds from non significant ones as I have gotten older, but what seems to have been fairly easy for most people has taken me a lifetime, and new environments all call for adjustments and new learning in the new situations.
How difficult is it for an autistic child without the advantages of experience or insight? How difficult is it for an autistic adult in workplace environments?

How difficult is it for an elderly autistic person newly placed in a nursing care or hospital environment?


More soon on other sensory processing issues.

What happens when we have struggles not just with hearing but also with other sensory input?

( hint, most of us have multiple sensory struggles)

Newly diagnosed Autistic Adults

Comments on forum are a strong argument for adult diagnosis of autism.

I was so deeply moved just moments ago.
I have a routine of checking in with each of the four on line autism forums I attend every morning.
One person had written that she was newly diagnosed and that she wondered what other people’s reactions to diagnosis had been.

People began to check in and tell their stories.
Some said they were initially shocked because they had no idea.
Others said they felt deep loss for things that might have been.
Some said they felt angry that they had spent their whole lives not knowing why they were different.
Some said they refused to accept diagnosis and fought it to begin with, but eventually became convinced the diagnosis was correct, and accepted it.

Every person (and more checking in as the morning unfolds – it is 5:30 AM as I type this) said that they felt relief because they finally understood they were not bad, wrong, morally inferior, weak willed, crazy, broken, hateful, spiteful, mean, cold, or any of the other labels they were given all the years they did not know and understand about their autism. Diagnosis explained so much!

Each person said it was a relief to have the answers to why life had seemed so difficult for them in so many ways.

Each person said it made so much difference in how they felt about themselves, how they saw their past struggles, and how diagnosis helped them make a new life with fewer struggles since knowing about their autism.

That parallels my own experience and speaks volumes about the tremendous need for finding lost autistic adults and giving them the tools they need to live better lives through gaining and understanding their own diagnosis.

I learned something from an article on autism and ageing the other day.
I had not thought of it before in this way.
This requires the assumption that autism has always been with us, rather than thinking it is an epidemic or sudden plague that appeared out of the blue in the middle of last century when it was first suspected and began to be explored.
Stick with me here.
If there are approximately 2 percent of every generation who are autistic, and autism has been missed as a diagnosis in adults ( childhood being measured from birth to the age limit of 20 years old), and there are currently ( as stated in the statistics I read) 5,500 autistic (diagnosed) people turning 20 years old every year here in the USA:
think about the 5,500 autistic adults in every generation each year who missed diagnosis simply because it was not done before 1980, and until very recently diagnosis was very rare.
People of the baby boom generation will have had more autistic people because there were more people born in that generation…
Half the baby boom population has retired, the other half is in progress of ‘coming of retirement age’. Using those same statistics, can we generalize that there are approximately 5,500 undiagnosed adults with autism reaching retirement age each year? How many are in the ‘over 65’ age category?

There are approximately 275,000 (between the age of 20 and 70) undiagnosed autistic adults in the USA alone. Of course this is only an estimate. Nobody knows, because that population is currently hidden. Actual statistics( I have looked at so many studies) estimate autism in all populations occurs at a rate of between 1 and 5 percent. I have assumed a conservative 2 percent for this discussion.

The relief of suffering in knowing yourself to be diagnosed with autism could reach and help so many people. We need professionals to diagnose, study, treat, provide therapies, care for, and otherwise support this group.

I hope that together we can raise awareness of this need and that we will soon see services provided for these truly lost and struggling generations.

OK, this is corny, but you will understand.

“I once was lost but now I am found”.
It has made all the difference to me. I hope others can be ‘found’ too.