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.


Autism Diagnosis at age 68

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

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

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

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

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

THINGS I LEARNED:

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

The evaluation appointment was to define my strengths and weaknesses.

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

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

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

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

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

I asked so many questions and got such clear explanations!

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

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

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

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

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

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

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

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

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

Diagnosis attempts continue

Yet another attempt to find somebody who understands adults, more specifically OLD adult women with autism.

This struggle is rather the norm for adults seeking diagnosis in the USA rather than an uncommon report.

I am blessed to have insurance that will help, but it still will pay for only a small portion of the diagnostic fees, and will not pay, of course, for all of the travel and personal expenses entailed in attempts to find somebody qualified and willing to work with older adult autism diagnosis processes.
The ability to travel or to absorb expenses not covered by insurance is non existing for so many adult elderly.

The best hope for ageing populations with autism is to familiarize the medical and supportive communities with autism struggles and the ways this might present itself in older adults. (We who have not had the advantages of diagnosis and support in youth, and who have largely had to struggle through life with little understanding of all the ‘whys’ surrounding our varied forms of disability and how those have affected us all our lives. )


I had talked briefly with my GP (general practitioner) DR about my search for diagnosis and she agreed she could not help, did not know of anybody who worked with adult subjects. She noted the input from my previous unsuccessful attempt with the neurologist.

Evidently the following/second attempt at diagnosis psychologist’s appointment notes were not forwarded to her as I requested, perhaps pending my diagnostic appointment which never happened due to extreme illness on the part of the psychologist.

The GP Dr has been aware of my struggles with anxiety and depression, and had prescribed meds for me about a year ago. It helped with my mood, and I was able to experience time with no anxiety, but at the cost of sleeping 4 or 5 hours during the day and at least 10 hours each night. I was sedentary and my weight shot up 25 lbs in a 2 month period. We decreased dosage but I was still lethargic and feeling unhealthy in spite of a less anxious outlook on life. I made the decision to go off the meds.
Anxiety is far less since I retired, and my understanding of how to control situations that might call up stress or distress (by avoiding them!) has helped greatly to reduce every day anxiety. Depression seems to be lifting as my feelings of being helpless to deal with so many day to day situations (mostly involving other people) have been fewer.

I saw the GP for my yearly check up yesterday and after my explanations about struggles with communication (which she has experienced with me herself, losing patience when i tried to talk to her and ask questions in the past) she has become more empathetic, or my perception of her recognizes this in her, where in previous encounters that factor seemed to be missing.

Dr GP agreed ( after some verbal wrangling and misunderstanding on both of our parts but mostly mine), to proceed with referring me to the Adult Autism diagnosis clinic in another state. It will entail a long drive (over 8 hours) and overnight stays both before and after the day of testing/examination. I will learn more when the clinic calls me to gather information and set up an appointment.
I have read the books the Autism diagnosing doctor has written about elderly autistic people and how diagnosis differs from standard diagnostic procedures for youngsters.
I have struggled recently to listen to a podcast interview with her. (my auditory processing is not very good) and I am sure she will either be able to pick my much-adapted autism out or tell me I am not autistic with accuracy.

This will be the ‘last stop’. If diagnosis is not autism I will have to look elsewhere to understand all the things that learning about autism seems to have answered for me. I can not ask my very supportive spouse to continue to invest our retirement dollars in a quest that will be of no financial benefit to anybody, and will only confirm what I am sure of in my own mind and heart. ( the benefit of official diagnosis for me being credibility as an autism advocate).
I will no doubt discuss the appointment and everything surrounding it in more detail as things fall into place for the event to happen.
Mean time I worry.

The neurologist of my first diagnosis attempt told me I was not autistic with an aura of almost gloating smugness, and the emotional devastation I felt because of his descriptions of my so called “other diagnoses” still gives me anxiety and dread.
I know his knowledge (or lack thereof) of autism was from the 1960’s-70’s when autism was not understood as well, and was not accurate, yet the damage done through his assigning so many other labels of impairment/mental illnesses had/ and still has me shaken to the core. The childhood and early adulthood me believing I am wrong and bad about everything surfaces and remains strong when I think about this, it is so easy to slip into the old habits of my approach to life for the first 65 years – all my fault!!!



One small part of me is fearful this will happen again.

So many people, women especially, in some of my on line autistic groups report having been given multiple labels for serious mental disorders and having been treated sometimes for years, for these disorders with little to no success, drugs and therapy simply compounding struggles, making one inert, or actually making things worse.


Society and medicine are just beginning to understand autism and how to recognize it, especially in aged persons who have had to learn coping mechanisms on their own, and to find their own way. I look forward to seeing adult diagnosis and understanding of autism before I die. I think it is coming. The more we can do to raise awareness of adult autism and help establish criteria and availability of information to diagnosing and supporting entities, the sooner this will become reality.