The best way to work

Autistic strengths and weaknesses of function
Find the best way to understand everything!

I have been spending time examining the ways I learn. I am beginning to understand all the best and worst ways I deal with the world.
I spent more than 65 years not knowing that it was near to useless to attend a lecture or live demonstration of any technique or process. I simply can not absorb the information presented.

I spent more than 65 years never understanding that what I heard and saw in lectures, live demos, and other audio or visual presentations such as television, video, or podcast would be wasted time for me.

I spent 65 years wondering how I could be so stupid, and how come I didn’t
seem to “get it” or understand what was evidently plain to others. Any social interaction or gathering was nothing but confusion, chaos, misunderstandings, frustration, and disappointment or humiliation or both to me.

I finally found out , through neurological testing once I knew of my autism diagnosis, that my sensory processing in all things audio and video, and especially in a combined format was only 30 percent or less functional. That is very very low! Finally I understood.
Try this. put on a pair of sunglasses, tear a tiny hole in a paper napkin and cover the lenses of the glasses so that you can only see the bit of light and image through the hole. Then put on earplugs, the kind that muffle all sound. Now go watch a movie or a video you have never seen or turn the radio on and listen to it without raising the volume . How much did you understand?
That is what most of my life experience has been like! No wonder I ‘didn’t get it’!

In order for me to learn, and to understand, I must read the information and look at diagrams, line drawings or simple photos in order for me to truly absorb and process information.
I will always struggle to understand real life interactions with others, or anything I observe (think of baseball games at the stadium, a concert or an opera, a lecture or appearance by somebody you admire) Real time is always too fast for my processing. It is how my neurology works.

Do you know how the neurology of your autistic children , autistic parents, spouse or friends works best?
Like my parents, peers, siblings, bosses, co workers, and teachers all those years ago, are you thinking I am being stupid, obstinate, willful or deliberately mean when in truth I do not understand what is expected of me, why, nor understand what might have just happened to create the upset situation I have somehow caused?

Neurological tests show I have high average intelligence… it proves I can learn.

But I also have real definable handicaps to understanding most things around me that happen “in real life” or “in real time” around me. Think of how this affects me every day. Interactions at the grocery, post office, doctors office, with neighbors, spouse and family, any ordinary interaction for you is filled with social hazards for me!

Sensory processing is how we receive any information, make contact with our world, or understand
what is happening around us. Sensory input is how we interact with others, with how we learn.

I have become convinced that knowing my strengths is the best way for me to proceed from here forward in light of my autism diagnosis.

Now I wonder about all the ways other autistic people process information. It seems that most autistic persons are highly visual. Movies, live demonstrations, videos can all be helpful. If the person has audio processing struggles, or is not visual, but is able to process audio spoken or sung words, etc best, learning techniques can be adapted. Not only learning, but what of every day life? What if the person whose best strengths are visual could use visual reminders of things needing to be done, of schedules or lists or to learn new ways to do things? How can this strength be put to work for better successes in every day living?

What if the person whose strengths lie in hearing and audio input could use those to learn, to deal with lists and reminders, to find new ways to do things? Recorded information, books on tape, audio reminders on phone or hearing/listening devices would boost learning and performance. How else could tools that aid audio processing help every day?

People whose strengths are in physical performance, or related to scent, tactile information, or other ways of processing the information accessible around them could all be aided and supported better by finding ways that utilize their strengths.

I am especially concerned with children being forced to participate in meaningless rituals of social and traditional ways of ‘teaching” and other interactions, when in many cases very little benefit is to be gained. I struggled through out grade school. I was constantly scolded, punished, chastised for not paying attention when indeed I was trying very hard to understand what was being presented. It was demeaning and frustrating and I simply did not understand why I could not listen and learn. I was a very unsatisfactory pupil, and very unhappy almost always. I was completely lost! And I was trying so very hard to be good, yet getting scolded and demeaned almost continually. Nobody knew!

I got very little out of school until I was in 6th grade and the lecture method of teaching was augmented by assigned reading. I finally was able to read the assigned chapters and understand what all of the spoken lectures and demonstrations were about. I finally began to do well in school classes. Because my visual and audio processing lags so, I was never good at and never will be good at social interaction on a face to face, ‘real time’ basis, nor on the phone…… but because I get most out of reading and writing, I can still have a decent social interaction with people on the internet or by email. We can exchange ideas and information because I can process what I read at my own speed and do not make others or myself uncomfortable with my odd reactions, expressions, appearance, or easily misunderstood demeanor or emotional or flat expression in my spoken words. I do not get anxious to respond within moments to spoken requests, questions, statements, etc. I can take my time to understand the words in print, and to formulate my responses in print as well. Perfect media for my situation and particular strengths and weaknesses.

I urge parents to look deeply into learning the best ways to reach your child. The same for spouses, caretakers, teachers, and others interacting with autistic folk. By changing the methods you use to communicate, teach, interact, express yourself, you may find you change the attitude and outlook of the autistic person/s in your life. Find new ways to do everything , keep trying until you get positive responses.
It will mean all the difference in both your lives to find the best ways to make the “real” world’s input make sense and to share information.

Masking

sorting it out, or trying to: random musings

I am reading more on my autism forums and blogs about masking. It has been confusing me a lot!

I am reading declarations from people swearing they will no longer be masking. They will stim in public, they will be their autistic authentic selves at all times and in all ways, loudly and proudly. “throw off the mask!”

wait a minute… really? I understand that masking is done to gain social acceptance… that it is done to ‘fit in’… things like wearing things that are the same as everybody else at the office, wearing ( for women) specific styles of makeup and doing hair and nails in conventional ways to be seen as ‘normal’ and become socially acceptable… forcing oneself to be careful to have manners and try not hurt anybody’s feelings, to respond in kind if asked to participate in social gatherings, group activities, etc etc. Many of these things are very difficult for autistic folks, and seem to be harder for us than those with neurotypical selves. Have I got it all wrong?

I suspect that a good many people who are not autistic struggle with doing all of these things and with “playing the social game” as well.
Why else would there be all the cartoons and comments about wanting to get home behind closed doors and take off your work persona along with the office clothes or uniform, slipping into comfy clothing or PJs all of that. ????????

At age 68 I have very many habits deeply ingrained. I have had a very difficult time sorting out my own “masking” which I am assured by others is being unhealthy and somehow morally untrue to my autistic self hidden deep inside. I can’t find that me.
I did ” play the game” (and mostly failed anyway) when I needed to and I dropped most of that once I left the world of the office behind.
Late in high school I did try to use makeup, wear appealing clothing, spend hours doing my hair – at least off and on. My attempts failed, and I went back to wearing cowboy boots and jeans for the most part, and spending more time with my horse than with people.

Things changed mostly around 21 years old when I had a boyfriend who pressured me to be more fashionable, to do things a certain way, to wear certain things, to change my basic self to make him more satisfied with me as a partner who brought admiration and social status to him by looking or acting certain ways.
Of course these were HIS ideas of who I should be. Being trained since infancy to appease and perform for praise and to avoid anger and punishment, I worked very hard at it all. I had chosen the wrong partner.

Subsequent marriage and then later divorce from that man, and a load of good counseling on making healthy choices and learning to be self assertive, that all went away. It took years !
I had spent so much time trying to please others I did not have a clue about who I was or what I wanted.

I gradually found myself, and married somebody completely different. My partner of 40 years supported me in being the ‘real’ me right from the start.
I stopped dressing to please others and began to wear clothing that was comfortable and didn’t hurt. I have not owned a pair of high heels in 40 years. My feet are so grateful!
I stopped doing my hair and makeup and stopped worrying about the latest fashions.
I found something that suited me.
I stopped going to social things and started finding delight in nature. In essence I found myself. Years ago.
It took quite a while to realize that I had developed confidence in my own choices of how to appear and how to behave in any given situation.

How much of ‘masking’ is due to our lack of self confidence, our lack of self knowledge and self understanding in the rush to fit in and please others? I wonder if this is just one more thing I had to be taught because my autistic rigid thinking did not let me see alternatives until somebody else pointed them out?

After thinking it all over, I suspect I don’t have much masking left in me.
I have no desire to openly stim in the ways that I did as a child. I have changed and adapted stims over all these years of life. Why should I go back to awkward and difficult behavior that caused me to be even more socially isolated? Don’t all people grow and change and adapt? Why is that so wrong?

I have no desire to aggressively proclaim myself as “different” and wear yet another “social uniform” representing another group of angry people seeking attention by “in your face” attitudes.

The strident calls of “unmasking” and demanding to be accepted no matter how far afield a person dresses, behaves, or self decorates, etc do not mesh.

Human nature is attracted to those who are similar and rejects those who are radically different (in most cases).

I have no gripe with the way anybody else wants to represent themselves, but if I walk into a formal situation wearing a diver’s wet suit instead of traditional formal dress, should I be offended if people avoid me and look at me askance? My reading of some of these loud opinions on the forums is that I should be angry not to be accepted as myself no matter how I present myself. Really? I think that might be a tad unrealistic.

Maybe I misunderstand it all. In any case it is only my observations and construct from my own
” old lady ” perspective.

I speak for nobody but myself in my limited understanding of so much of the world.

Anger and strident behavior do not seem to me to be likely social attractants.

One side of the group autistic mouth proclaims and demands and the other side laments lack of friendship, finding few who willingly interact and respond.
Do what is right for you.

Autism and friendship

Social struggles are one of the hallmarks of autism

One of the most important diagnostic elements in obtaining an autism diagnosis is social struggles.

Difficulty with human relationships and struggles with communication are both things that need to be present in any person for diagnosis of autism.

DSM 5, description of autism, the diagnosis manual guidelines used in the USA, defines several different ways a person may struggle with relationships and communications.
To receive a diagnosis of autism, a number of specific struggles must be present.
Use your search feature to look up specific DSM V descriptions of all the ways an autistic person can struggle with social issues and communication.

In other words if one does not have social difficulties, one will not be diagnosed with autism.

This being so, I continually see threads of discussion on autism forums I attend, asking how to make friends, how to find a partner to love and share life with?

I have struggled with these too, when I was younger. It breaks my heart that so many of us feel this so deeply, and it is completely understandable. To want companionship and shared affection is human nature.

Being autistic myself, I have had a lifetime of social pains, disappointments, misunderstandings, crushed hopes, trampled dreams, and horrible memories of failed relationships. I suspect this is human and all people can probably relate to this in one way or another, not just those who are autistic.

On the other hand, I also have had a few lifetime friendships and have now been married for almost 40 years. Because I see so many people sharing their pain and struggles in relationships and friendships, wishing to do better and not knowing where to start, I have been giving a lot of thought to the few successful relationships I have had over time.
Maybe there are things within these successful experiences that could be used or adapted in other people’s situations to find friends or attract a mate.

What do all of my successful friendships over the years have in common? First and foremost, we have shared interests.
We share information, enjoyment, and activities surrounding a common passion ( special interests!).
We are peers from the same economic status, similar educations, and have somewhat similar outlooks on life, or we are willing to tolerate, support and respect each other’s differences.

We were local to each other at the times our relationships formed, so we had easy access to each other for interaction.
I met each of my good and true friends while following a common( shared by the other person) special interest.
That gave us something in common to talk about and to interact with , also gave us the opportunities for other activity planning around the common interest. This seems particularly significant to me.

I retired 7 years ago to a new community where I did not know anybody.
I tried to join a couple of interest groups but found that in both cases, the members and I had little in common. Both were groups whose basic life outlook differed from mine and whose socio-economic standing was far different from my own.
In spite of that common interest, no wonder I could not find anybody to relate to!

I joined a couple of facebook groups online which exchange discussion and information about one of my favorite activities.
A few local people from the facebook groups suggested getting together to do that activity together.

Some of the people I met were not very compatible, and i did not see them again, but a handful of them were. We found so many things we shared in common, not just the special interest, but our lives, our outlooks, even similar disabilities. Amazing!
I now have a small group of local people who share my passionate interest and who I can meet with when I choose, and with the person or people I choose… whether a large group or a smaller more personal group.
It has taken 5 years, but now I almost always have an activity to share and people I feel comfortable to share it with.
Having that common interest and basic social background seem to be the key. I can be as active as I want, they know me and accept me for who I am.
I have never experienced having a group of friends to do things with before. It worked for me. Maybe it will work for you too.

Because autistic people like lots of detail, I will talk about a few things that I have learned ( the hard way!) which don’t work.
I looked for others on the fringe of the group, the outsiders or the “odd ducks”. I get along best with others like me.
I did not attempt to chase a friendship in a family group or to follow the group leaders and social high status people of the group. I learned not to try to be a part of the “in” crowd , in other words.

I have seen some males do odd things in search of romance. They will inevitably pick the “hottest babe” in the group, set sights aggressively focusing interest on her alone, and be disappointed if she is not interested in return.
If they had looked around them they would have seen lots of average, woman on the street , sometimes chunky, funky, interestingly dressed , bold or timid women watching from the sidelines. Get real. Most of us are not fashion models, women or men! ( and I don’t mean to be exclusive of any group/groups/gender or non gendered people seeking companionship or love, I am just using as examples of experiences from my own long ago past) .
Don’t look twice at the #1 pick from the fantasy movies or books, but real life people of your own social status and physical type.
Find somebody who is real. Hormones are funny. Think with your head. Women do this too, and will sometimes chase a high social status man not at all compatible with her own status or physical type in the same way…. wondering all the time what they might be doing wrong.
Take a realistic look and try to discern fantasy from reality.

Funny, me the social failure giving relationship advice. I have to see the irony in all of this. If there ever was a social failure for most of her life, its me.
I did finally get some of it right, the results speak for themselves. I’ll never be a social butterfly, a politician or a diplomat. But I am not so lonely nor do I feel as defective and as much of a failure socially. The best news is that things can change. We can change the ways we go about things, learn new ways to react, interact, new ways to do things. This goes for social struggles too.

I learned about the acceptability of being squeaky clean and showing signs of good old soap and water. No need to mask and use makeup, fancy clothes you don’t feel good about, no extra adornment if you don’t like it. Just be good and clean… that is attractive! I learned the same about wearing clean clothing, and about basic manners, and am getting better at conversation now I am aware enough to practice good manners in conversations, learning social cues about when somebody is bored, when I am talking too much, not listening enough, etc.
I am sure it all takes conscious practice for something that might be instinctive to some. Harder work for us but maybe worth it. You will have to decide for yourself how far you want to go with socialization and “how to do it”.
I somehow missed a lot of the basics, having nobody to explain them to me all those years ago.
I wish somebody had sat down with me even as an adult and talked to me, talked to me about all my social weaknesses so that I would have been aware enough of them to have done something about practicing social skills and learning about them… but until I learned about my own autism at 65/66 and had discussions with so many others with similar struggles, social interactions were just one more thing I did not know that I did not understand!
I am trainable! ( that is one of my standby mottoes which has stood me in good stead).

I keep going back to this point in my blog, I recognize it.

” If you are raising an autistic child, please explain simply everything!”

Explain what to do in social situations, how and why we do it. Explain what can happen in every situation you can think of and talk about unexpected outcomes, handling awkwardness, apologies, explanations, manners, what to wear, what is appropriate, what is not in any situation. and WHY.
The more you explain, the more understanding cooperation you are likely to receive, and the better your young one will be prepared for the realities of being an autistic adult in a social world.

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.

autism in elders

raising awareness

This is the first edition of my one page autism in elders awareness flyer. Everybody is welcome to reprint and distribute it if you see fit to do so.

AUTISM in older adults???

Autisticelders@gmail.com
Autistic Elders on Facebook. https://facebook.com/groups/543548473159235/
Blog https://oldladywithautism.blog/author/debrabrisch3436/

LOSER! Thoughtless, rude, cold, uncaring, inept, inappropriate, failure, outsider, weirdo, clumsy, out-of-it, gullible, stupid. Have others given you these labels? Has it seemed impossible to do anything right? Have you been told it is all your fault? Do you think your life has been much harder than other people’s but not sure why?

Do you have trouble understanding what other people expect of you? Are people often angry with you and it is not clear how it happened or why?

Are you too open and trusting? Is it difficult to stop others from using or abusing you?

Are you bullied, and do you understand why?

Are you estranged from family members or do you have few or no close friends?

Have you had “people problems” at home, work, school, and other places?

Are you often frustrated, hurt, angry, sad, depressed, or anxious? Do you feel misunderstood and socially isolated? Do you have a sense of “otherness”?

Do you wonder why it is so hard for you to do so many things that seem to come easily to others?

Do you self medicate using cigarettes, booze, street drugs or other things to help you deal with life?

Do you have a very narrow range of interests, but the interests you have are intense and all consuming?

Do you have a lot of self blame, do you believe the negative labels you have been given?

What if You found out that it was not all your fault after all?

What if I told you that you might have an in-born neurological difference and that you have struggles that other people simply do not have because of your unusual neurology?

HAVE YOU HEARD ABOUT ADULT AUTISM ?

Today most scientists believe that autism is probably genetic, although causes have not been completely identified, there are several genes that have been identified as associated with autism. Autism is present at birth, it is not caught, does not develop, can not be cured.

Autism causes uneven neurological development and is present at birth.
All autistic struggles are based on neurological functioning and have to do with sensory processing. Our understanding of our whole world is based on information gathered and processed by our senses. Every person with autism has sensory processing struggles, but in every autistic person the struggles are different.

What happened to all of the people with autism before 1980? We are the Lost Generations. We grew up struggling and being blamed for our lack of success. Nobody knew! Autism affects approximately 2 percent of the population according to conservative estimates. Some studies suggest autism may affect up to 7 percent of the general population. There are millions of undiscovered and undiagnosed adults ( over 21) who are unknowingly autistic in the general population. Autistic struggles can be recognized and helped with diagnosis. Diagnosis can be life changing.

Diagnosis even at a very late age can bring healing of hurts, self understanding, and provide new ways to live a better life through accommodations once it is known that one is autistic.

Are you somebody who is struggling in life? Do you know somebody who might find the descriptions here familiar? Undiagnosed autistic people have gone through life not understanding that so many of their struggles are not their fault, that life really is more difficult for them, and that there are many ways to make life easier once we know about our autism.
Contact Autistic Elders at Autisticelders@gmail.com or check out the links at the beginning of these pages for more information.

Autism Trauma, PTSD,Anxiety

Trauma, anxiety, and PTSD are not diagnostic of autism, nor are they believed to be caused by autism.

But it still appears there is a connection for many autistic people. There seems to be a higher incidence of anxiety diagnosed among the autistic population than in the general population ( 16 percent as opposed to 5 percent) in one study i examined .

I have spent a good bit of time reading about autism and the fact that so many autistic people report having anxiety, having experienced traumatic incidents, been traumatized repeatedly through abuse, bullying, certain therapies, and in some cases repeatedly distressed due to autistic processing struggles. (sensitivity to sound, touch, etc)

The part about the trauma or distress being due to processing struggles is what I want to address here.

A few years ago until the present, there were studies and diagnostic explanations released which said in essence ” PTSD can have the same symptoms as autism, so don’t diagnose autism until you are sure it is not PTSD”. I read several articles all seeming to say that too many children were being diagnosed with autism instead of PTSD.
But today something interesting seems to be happening.

Instead of saying children with PTSD seem to have the same symptoms/behaviors as autistic children, they are seeing that autistic children seem to be more prone to PTSD. That PTSD and autism can and do occur together in the same individual.
Things that can be experienced by neurotypical children and not be traumatizing can be devastating to a child with autism.
The difference is in the way the experience is processed. Examples were given of one child who had PTSD due to the sudden ringing of a loud automated bell that marked class periods in early grade school. Kids who are neurotypical would not be traumatized by the experience, but due to sensory processing difficulties, the autistic child was traumatized.

This only makes sense to me.
I can understand how this happens by looking to my own autistic early life upbringing.

Using my memory of my earliest childhood experiences I can see how my own inability to regulate sensory input or make sense of my experiences worked to give me tremendous anxiety.

I have said that before I knew about my autism I lived my life in fear. Fear has been the predominant emotion of my life. It overwhelms everything else persistently and continually.
Knowing and understanding about my autism has provided much understanding and is slowly causing the anxiety to ease as I understand more and more from my past experiences in light of the autism and how it affects me every day.

At the time I grew up it was perfectly OK to swat, spank, hit your child to train them in behaviors and make sure the parent was respected and obeyed.
My mother was autistic and a first time mother. ( we did not know or understand she was autistic until well after she died)
She kept me fed and bathed, took me for walks in a pram and later in a stroller, and most of my time was spent in a “play table” that locked me in a sitting position with a surrounding table from which I was fed, entertained, and kept safe from the dirty floor and the dangerous things around the house. My mother and father held my hands and ‘walked’ me around from time to time, and my mother says I was standing in this way by 9 months old. I began to resist the table/staying in the chair routine and actively fought her when she tried to place me into it. A few whacks on the seat at first got compliance but soon it didn’t matter to me, I did not want to sit there any longer!!!!!
When she finally let me out of the safety of that chair, she began swatting/hitting/spanking me on the hands or the backside if I touched anything or did any other thing she did not want me to.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hitting as punishment stopped when i was 8 and my sister( much larger, stronger and not as intimidated as I ) was 6 and she turned on my mother and attacked her while being ‘punished’.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

At this point, age 9 months, I believe I understood spoken words quite well, although my own speech was at the ” point and say” stage.
I don’t believe I understood why I was hit for most of my life until I was about 5 or 6 years of age. I simply did not process the action i was caught in with the punishment, frightening, sudden, and painful, that I received.
Even by age 5 just telling me to “stop it” did not tell me what was making my mother angry.. autism. My sister probably understood.
To my autistic understanding at 9 months old, punishment sudden, surprising, painful and fear causing, was surrounding me always, waiting to happen in unpredictable times and for unknown reasons. It suddenly came on me with no warning and no comprehension of why or that this punishment was in any way connected with whatever I was caught up in at the time.

Please don’t worry about that confused little girl, ( she is fine today!) the point is not to get sympathy or to complain, but to explain how it happened that I had anxiety for most of my life.
I was always worried that I would be punished for things I felt woefully inadequate to deal with. I simply had no understanding of how or why these awful sudden , yes traumatic things happened. I learned to be quiet and wary and to wait for instruction or indications of what I should or could do. Those situations seemed safer. At the same time I was punished if I ever showed frustration, anger or resistance to any parent or sibling. I learned to block my anger. I learned not to protest or to cry.
If I was given a toy to play with and told to go to a certain place to play, I played with that toy in that place. To venture any other thing was to invite danger. By the time I was 4 years old and I was reading complete sentences at a much higher level than for a normal 4 year old. I spent hours drawing and reading quietly. At age 5 I was having nightmares about my father blowing up the house, or my mother chasing me with a butcher knife wanting to kill me because I set the table wrong. My parents were to be feared and obeyed. They were never comforts or safe havens or somebody I could turn to for help or understanding. I did as I was told and was to otherwise not show I was there or ask for anything. I simply did not understand things in any meaningful context and there was nobody to know this or to explain to me all the things I did not understand.

By the time I went to school at age 4, I believe I was programmed to be anxious and fearful.
My early life experiences taught me to be hypervigilant, appeasement oriented, and to expect to endure pain, fear, and other emotions in a stoic manner. I had no other options available, no ability to reason or to see when or how I could be safe or how to manage or negotiate or communicate wants or needs.
Autism in me (and I believe others) needs explanations in as much detail as possible for everything that happens, for everything that is done, going to be done, or done in the past. I simply can not understand most things without either previous experience and understanding to build on, or explanations.
My autism ‘understanding’ as a small child led me to make many conclusions which were probably false and led to my anxiety. Add to this the bullying, emotional and physical abuse and not understanding why all of these things happened, I was lost and had to design my own ‘survival kit” of defensiveness, anxious watchfullnes-hypervigilance, avoidance, and self isolation. This pattern continued for most of my life, feeling inadequate to whatever might be ahead, not knowing how to cope, not having understanding or tools to deal adequately with almost every circumstance in my life. No wonder I have been anxious!!!!!

I need to know what is going to happen, when and how. I need to know why somebody is angry with me and what I did that caused them to become angry. I still need all of that explained.

Failure to gain those explanations meant I was at my own resources to understand my world. I got a lot of things wrong but I survived.

Now with my autism diagnosis at age 68 I am going back over all of the ways autism has affected me since even before I had words, well that is taking a long time. But now I have explanations and understanding of my autism to help me sort it all out and see how autism has worked in everything .

It makes all the difference to know and understand why after all this time.

Think of what happens when children are physically and sexually abused, when they are subjected continually to therapies that are traumatic and/or incomprehensible emotionally or mentally.
I can certainly understand how autism has played its part in my anxious and self protective, helpless view of the world. I can understand how experiences other autistic children and adults experience can be much more traumatic than they would if those same experiences were had by neurotypical individuals.
I think I am on the right track when I say I believe that PTSD and anxiety and autism can be co- existing conditions, and I think I understand why. What do you think?

What Next?

Now I know I am autistic, what next?

I started this blog almost exactly a year ago! So much has changed, so much has stayed the same.

Now I have my ” official diagnosis” I can move forward with my original plan.

I want to reach out to other undiagnosed older adults and help them find out about

autism and how it might have worked in their lives. Diagnosis can bring self understanding,
self forgiveness, new understanding of old hurts, emotional healing, repair of relationships, and learning of new ways to make life better.

For me, this means that I will not only have a blog, but will start workiing on a forum for discussion of autism and the lost generations of people age 55 and over.

I want to develop talks to explain how autism is hiding in these generations and how useful knowing about one’s autism can be to people when they learn of it.

Since December I have been working on developing a two sided single page information sheet to share with others. It has been very difficult to find the right words to explain autism and to create a short sort of self test to help people see if they too might be autistic. Along with this I need to include contact information and a place to go for more information. A lot of stuff to fit on one sheet of paper!

Here is a link to my newly created forum, as a page on Facebook. It is meant for information sharing about autism diagnosis among older people and not as a social page, for parenting, or other ( such as sales or self promotion) venue. Please join up and share – there are so many who might benefit if they were able to find out that they too have always been autistic, but did not know it! https://www.facebook.com/groups/543548573159235/

Next I plan to approach local groups and perhaps radio or newspapers to propose a talk about undiscovered autism in the senior populations. I think of such groups as the senior citizens center, nursing homes, emergency room/medical facilities, the homeless shelters, shelter for victims of abuse, drug treatment group, mental illness support groups, etc.

I will print as many of my one page sheets as I can afford to and pass them out, leave them in public places such as grocery store bulletin boards, the library, and other places where people may gather (with permission).

The idea of talking to groups is terrifying to me, but in new understanding of my autism and working on personal growth, I feel bound to try this. Knowing how much I have been helped and how much relief of emotional pain, how much better my life has been since learning of my autism, it is something that seems very important. Important enough for me to try!

OK, here goes… wish me luck! ❤ It is going to be a new year of discovery and exploration. Learning how to be old and autistic at the same time, and hoping to find others along the way. I’ll keep you posted!

Autism tools you can use

How to find help

This continues regarding tools you can use to help yourself live a better life. The same goes for those who care for an autistic family member or care about somebody who is autistic.

Many times we struggle with problems that are too big to handle alone.
Yet we are afraid to reach out to others or ask for help from professionals or groups which may be able to provide information, training, or other support you need.

If you are afraid to ask for help by yourself, please try to get somebody to be your advocate, whether you contact an attorney, social worker, minister or priest or others in a church group, service groups, there are specialists who are waiting to serve your needs and help you find ways to make your life better.

If you have struggles communicating there are people who can teach you skills to help express yourself better.

If you have needs for housing, food, clothing, there are agencies and individuals who are willing to help.

If you struggle with problems with drugs and alcohol or other substance abuse, even over eating, there are professionals and support groups waiting with tools you need to succeed.

If you struggle with emotional overload or anger management issues, there are professionals and support groups available.

If you need help with almost any struggle, there is help available.

There are things standing in the way of getting help, though. First we have to know ourselves well enough to understand our struggles. Second we have to admit we need help with them. Third we have to reach out to others to find the help we may need to overcome these problems.

Which stage are you in? Do you know your worst struggles? What brings the most frustration or pain to your life? Do you know why? How can we sort it all out?

Therapists, Social workers, and psychologists can help us understand ourselves better. We can find information online, in books, self tests, or talking with others in support groups or online forums. Take time to think through the biggest problems you have now or have had in the past. Then know that you don’t have to work on those problems alone.

Your Doctor might be a good place to start. You can ask for referral to professional help if your problems can be helped by medical professionals.
You can call the local crisis hotline and ask what agencies they have on their lists that could help you. The more specific you can be about your struggles, the more likely they can be to match you up with somebody who can help.

Hospitals and churches usually have lists of helpful connections, as do all social agencies and usually senior citizens centers have resources available. These can be to help almost any issue from depression and suicidal thinking, mental illness, homelessness, hunger, domestic abuse, child care, respite for caregivers, health care, home help, anger management, substance abuse, sexual abuse, and many other issues.
There are resources available for learning better communication skills, finding help for specific chores such as cleaning, laundry, mowing or snow shoveling, helping with transportation to medical appointments or grocery shopping.
The list of helps available is long, and there are usually more resources available in larger urban areas than in small communities. If you are afraid to reach out, you can check a lot of things online, or perhaps you will have a friend, family member or other willing soul to help you search out answers to your struggles.

There is no reason to struggle alone when there are so many ways to find the help you need. If you struggle with overwhelming issues, feel lost and alone, even if you can’t be specific but only know you need help, there is help available.
Please reach out, you do not have to do this alone.

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.