The importance of diagnosis

Knowing I am autistic has been the greatest and most useful information I have ever discovered.

I want to repeat once again an explanation of the purpose of this blog.

Recently I have been getting a lot of emails with apologies for my childhood pain and angst, for my sufferings and my struggles, and all are so sorry I went through that.

I feel I have failed if the only thing I have done us stir your sympathy/empathy for pains long past.
The point of telling these things is not to obtain sympathy or to lament “poor me”, but to illustrate how autism and my lack of understanding, and the lack of knowledge of autism in those around me all contributed to the struggles we had then.

I am trying to point out the dynamics at work in an ‘autism blind’ world.

I am trying to point out things that may work to help understanding and communication as persons interacting, whether autistic or neurotypical.

The point is, that nobody then knew what we know as I type this.

Autism was at work in our interactions and none of us knew what was wrong, or how to do things any better.

Now I know and understand that I am autistic, I can see clearly how so many things happened and why.

Now I know about autism I can figure out so much of what had confused me for most of my life.

My writing here is not about the suffering and struggles, as much more it is about learning what caused them, and how they can be averted for those who are having trouble in the world today.

Older autistic persons such as myself, who went through life without ever hearing about autism are likely still living every day with a sense of confusion, frustration, self doubt and blame, anger issues and a deep sense of being a failure.

Those were the lessons taught to us by society at large and our lives being lived without the insights and understanding, and especially the self forgiveness that comes when we understand that we are not personally to blame. Autism diagnosis changes everything!

Autism diagnosis can open doors and shed light on thinking that casts a shadow first upon oneself for being ‘bad’, ‘mean’, ‘coldhearted’, ‘selfish’, ‘thoughtless’, lazy, and so many more labels we were given because nobody knew about autism and how autism changes perceptions, understanding, behavior and above all human interactions. Nobody knew!

Knowing about my autism is the best thing that could have happened to me. It has allowed me to understand so much of my past and see the dynamics that were not obvious before.
Diagnosis has given me self understanding. I had no idea of the way my thought and sensory processes differed so greatly from others. I never understood why I failed at so much that seemed so easy for everybody else. I never understood that it was not my fault. Why was I such a miserable failure?? Nobody knew!

Diagnosis has allowed me to forgive myself for being less than perfect, although I truly tried all those years to do my best, my sense of failure in any social context was overwhelming. Nobody knew!

Diagnosis has allowed me to see in light of learning about autism, how all the others I interacted with did not know or understand either.

I have been able to forgive the past and am now free to work on my deepened understanding of myself and others.

For the first time I am able to know myself and understand how my own thought processes, and indeed all the sensory processes that make up ‘who I am ‘ define me. Self understanding has brought much deeper understanding to my interactions with others as well. Diagnosis and the subsequent self understanding has been a tremendously interesting and satisfying experience, I am so uplifted in spirits and feel encouraged. With the understanding of autism I have the tools to learn and grow in so many new ways, and the insight into my autism makes it possible to see things with much deeper understanding and allows me to explore so many new options for my life.

I hope that all older people who are autistic can find the same freedom and insight that has come with my knowing and understanding autism, in myself, in my interactions with others, and in my life of the past and especially my life as I am now learning to live it.

The purpose of this blog is not to arouse sympathy, but to make people aware of the desperate need to reach older autistic people and with proper diagnosis help make the world they live in more negotiable, more understandable, less hostile, and provide good working insights and tools to use to live life free of self blame, doubt, and so much misunderstanding.

Diagnosis is healing.

Diagnosis is the key to self understanding.

Diagnosis is a catalyst to personal growth.

Diagnosis is an answer to all of those questions of ‘why’ that torment and had, until diagnosis, been unanswerable.

There are thousands of us in the USA alone. ( undiagnosed elderly autistic people) I hope to help by raising awareness that we are here, autistic, most of us in these elder generations simply not knowing, and so much help can be accessed, so much understanding and forgiveness made possible, so much healing and inner peace finally available by diagnosis of our autism.


If autism had a mantra, this might be it. One word in my vocabulary is used more than any other to help me understand my world.

I wonder if that question could become part of diagnosis tools for those who screen for autism?

When I was young, I remember I asked why until everybody was just sick of the question. It was considered challenging and belligerent as a response coming from a child. Why should I do this? Why did you do that? Why questions have always been a big part of my life. I have even met others who agree they love to ask and find the answers to why questions. (now I suspect some of those folks might be autistic too!)

“Why” is a quest for information and understanding.
“Why” questions are:
Looking for reasons, facts, patterns or rules behind the statement, request, or directions, behaviors in others.
Why questions look for basis of intent, factual information, structure, parameters, or something to anchor understanding of my world upon.

I do not understand much intuitively or by ‘reading’ physical signs of emotions
or seeing the “big picture” from things going on around me.

” Why” is an honest seeking for information to help me understand.

This is as true today as it was in my childhood.

I use that word “why” so many more times daily than any other word in my vocabulary.
I love to find people who want to ask the same questions about topics I am interested in, and to try to pick things apart to find the answers.
I love to ask trusted companions why that guy said or did something just now, or why the group thinks certain ways to proceed are proper.
Why was that lady offended or angry when I said or did (whatever it was- I do this a lot!) ???
Many times I do not have a companion or a book or a therapist, a feedback or replay button to gain more information.
I must struggle to find the answer to my “why “questions alone in order to make sense of my world.

If somebody asks you why, please interpret it as a search for deeper understanding, and not as a challenge to your authority, your status, your person in any way.

If it comes from an autistic person, please understand that WHY is my most powerful tool to use with others to help my comprehension and fill in the blanks missing with my sometimes impeded processing of the information available to others just by observation.

I do wonder if a person screening for autism, especially in older people , might find a way to see if the very frequent use of the word “why” is common to the autistic population.

The Spectrum is probably not what you think it is

A new blog by C.L. Lynch on the Aspergian is being shared

frequently by the autistic communities I participate in. I it a great and eloquent way to explain the endlessly varied expressions of autism in the human population. I wish so many people I know could have access to it and read to understand more about autism.

I don’t think I can add a thing to it, please just read and understand.

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.

Assumed incompetence

patronized in a whole new way …

Now to report on something that has changed in my life experience. For several years now, with my graying hair and evident age I have been “patted on the head” metaphorically, being called “honey”, “sweetie”, “dear” and other endearments by complete strangers, usually younger women. It makes me want to bite somebody, just to show I am maybe not such a “sweetie” after all. Of course there is a world of thoughts and ideas, fantasies and speculation, and another world that often doesn’t intersect in what one would actually do. Fantasy can be a comfort some time. I have adjusted to the endearments and tend to simply ignore them. It is just proof that they don’t know me very well… right? Are they attempting to show good will and friendliness? hmmmm.

But I have noticed something new since I have discovered I am autistic. I am open about my autism and make light off and on of some of my struggles. I have this blog, which I share with the public in hope of helping others who are not yet diagnosed to find the peace of understanding themselves and others in knowing how autism affected them in youth and in their daily living. I willingly answer any questions I get from others when they learn I am autistic. One way to overcome stigma is to educate others.
On learning I am autistic, there are some folks who seem to immediately assume I am therefore incompetent to make decisions, to perform certain functions, to have any sort of judgement or understanding of things in this world which I have long been familiar with.

I am so old that my high school class just celebrated its 50th anniversary of graduation. There have been reunions before, and I have not participated.
Most of my memories of high school are of being mocked, bullied, socially isolated, and other non- successful social interactions.
I really had no desire to revisit those memories or to interact with those individuals who inflicted them.
When the announcement was made of the 50th anniversary celebration, there was also a form forwarded to fill out, asking class members to share what life has brought them in the past 50 years and to keep others informed.
I had filled out these forms before for the 10th, 25th anniversary etc. .
This time instead of the usual progress report, I asked that the link to my blog be included.
The reaction was interesting. ” Oh my what a blog, how brave of you to share your struggles, I am so proud of you.” This from somebody who I never had any interactions with at school and have no personal relationship with at all!
Then the question, not once but twice. “are you sure you want to do this?”
Implied was the idea that I would be ashamed to share this information about my autism with my former classmates, or that somehow I would damage myself or my personal image among my peers. It would be made public! Oh NO!
Yes, I assured them that I did indeed intend for my public blog to be publicly shared with all of the persons on the classmates list. I want as many people to be aware of un-diagnosed autism in the older generations as possible. I see this as an opportunity to share the benefits of diagnosis. Knowing I am autistic has been healing in a way that no other event of my life has come close to.

I am getting metaphorical and verbal ” pats on the head” and “aren’t you special” treatment now from others I am interacting with. I tend to just leave these comments alone, too, and attribute their reactions simply to attempts to be kind and to their ignorance of autism in general.

It is interesting that even though I was a social pariah in many ways before I learned I am autistic, I was not automatically treated as though I was also incompetent in general. This assumption of stupidity or lack of judgement does not sit well with me, it is a new experience and tends to make me feel crabby when it happens. So far I see it as well meaning ignorance. Perhaps that is better than the active hostility and aggression I experienced throughout most of my life.

The label of being autistic seems to have changed people’s perceptions and added an automatic layer of disdain or contempt for my ability to think. Yes, stigma!

Just shows there is need for not only autism awareness and education as to what autism actually ‘is’ in its many forms, but also need for acceptance. Hoping to open and win minds one person at a time.
Tomorrow I will be asking my GP for a referral to another autism specialist. Anxiety building. Subject /topic for a new blog page soon.

“what is wrong with you?”

What is wrong with me? What is wrong with her?

Something is just awkward and off about that person. They don’t understand your directions, they don’t understand your complaints, they don’t do a thing to correct their behavior, which is obviously inappropriate, wrong, bad, socially unacceptable, harmful, etc.

This is about autistic perception and processing, and how it can be different from NT (NeuroTypical) thinking.

Not everybody who is autistic struggles with this particular problem, but many of my autistic cohorts think in a very direct way which does not include guessing at less than specific directions, comments, thoughts, etc. Many of us are incapable of guessing from hints.

As a child it was a very painful struggle, and is still at the base of many of my worst memories of social mistakes and misunderstandings.

Direct communication as specific as possible, with plenty of details is the best way to reach my understanding.

Vague, generalized, hinting, innuendo or hidden, veiled suggestions or threats will not be noted or responded to. I just don’t understand them for what they are. I in essence can’t see or hear them as they are meant.

Today I ask for specifics, as a child I was thought of as being challenging, difficult, deliberately being naughty, uncooperative, etc etc etc.

My life growing up was full of questions about why I did not co-operate with the school group, the family unit, with others I was in contact with in almost any and every situation.

I wanted to perform as they desired, but did not understand what was expected of me.
I was often challenged with questions about “what were you thinking” when I did something I got punished, humiliated, mocked or degraded for.
This was an every day thing, sometimes happening multiple times a day. It could have been avoided, in many instances could have been helped and ended successfully.

“Why don’t you straighten up and fly right?”
“Pull yourself together and get on with it!”
“What’s the matter with you?, you better get busy!”

“You always” ( fill in the blanks, screw things up, ruin the fun, feel sorry for yourself, think only of yourself, are so thoughtless, are so selfish, etc)

Same for the “you never” lots of things to criticize and scold me about there, too.

I felt as if I was constantly wrong and bad, and in one sense perhaps I was.

But you will note that all of these comments are non specific… they do not explain exactly what I am doing at the time that engenders anger, frustration, impatience, disgust, hurt feelings, or other emotions.
I was never able to extrapolate from these exasperated comments what behavior was wanted from me, in what ways, and how to perform the expected behaviors.
All I knew was that I was once again being punished as a failure.

Today I can tell you that I needed specific instruction and perhaps explanations. I didn’t need to hear a lot about somebody else’s emotions, I just needed to know how not to anger you.

Tell me: “Stop kicking your brothers chair leg.” instead of “stop that”.

Tell me: “Take the laundry upstairs and put it away”, instead of just handing me a basket of clean clothing.

Tell me to set the table, instead of saying “dinner is almost ready”.

Tell me to empty the waste baskets in every specific place, and to then take the garbage bag to the can or out to the curb, instead of just saying “put out the trash”.

Tell me get ready to go to the store by saying “we are going to the store soon, so change to clean clothes, wash you hands and face and put on your shoes.”

General statements of intent such as “we are leaving in 5 minutes” does not tell me what I need to do to be ready to leave.

To Neurotypical people it seems things ‘should’ be automatically understood from short, non specific comments as above, but I can guarantee you those comments were not understood at the time and remain a puzzle in my mind and painful to my soul as reminders of how stupid I felt and how angry everybody was with me, when I did not understand a thing. If there is an autistic person in your life perhaps you and they may find life easier if specifics are given when requesting co-operation instead of using generalities.

Asking for a referral, social anxiety, why I prefer my own company.

I am planning to make another attempt at “official diagnosis”

Due to problems with communication and my GP’s short, abrupt, impatient treatment of my questions, and incidents of her scornfully yelling at me in the past, I had avoided the idea of asking for a referral, or trying to explain to her why I believe I am autistic.
I had searched both my insurance network and the network of health care providers she works for, and none of them had any specialists in autism, not even for children.

I considered asking for a referral from the GP an unnecessary, dead end approach to diagnosis. I did not bother asking her, because I knew from my research on Doctors available in her extensive statewide medical system that none were providers with any interest in autism.

Now I have found a Hospital in another state, 9 hours drive away, which has a department devoted exclusively to diagnosis and care of autistic adults. The doctor in charge of the clinic is an author whose books I have read. It seems she does indeed understand autism in adults. In order to see her, or to be considered for diagnostic testing and interviews, I must have a referral from another doctor.

I dread going for my yearly scolding/wellness check so am already beginning to fret.

A thousand “what if” questions run through my head. I feel as if I have to be prepared for any eventuality and of course I am not able to do that. Feeling incompetent to deal with a given situation is a BIG trigger for anxiety in me.

Most social situations (dealing with any other humans and trying to interact with them on any level is something I consider a social situation) cause great anxiety because I fear I am not competent to deal with whatever may happen. Let me re-phrase that, I know I am not competent to deal with most situations that may arise. Life long experience has taught me that. I am much better at age 67 than I was in my first 30 years, but by comparison with most NT persons, I still find I fail quite frequently.

Most anxiety for me is because I feel that I will not be able to deal with whatever situation I am facing in a competent manner, without making a fool of myself or annoying or angering somebody.
So many life experiences in the past have proved these fears are founded in truth.
As an older adult I no longer fear physical harm from most situations, but I dread anger, argument, aggression, criticism, scorn and rejection. I am simply afraid to subject myself to situations where these dynamics come into play, leaving me emotionally hurt and helpless to defend myself.
With life experiences of this sort of thing happening in interactions with others, is it any wonder I am anxious?

It is not that I don’t want to interact with other people, it is more that I seem unable to do so without causing anger, scorn, or other negative treatment from others.
I prefer not to ‘socialize’ – that is interact with others regardless of whether it is in an informal or a service or professional setting, because the negative experience has been the most common in my life, and why indeed would I seek that out?

BUT: Is that not what the goal of seeking diagnosis is all about?
I wish to interact with persons to tell them about autism in elderly people. One by one I am facing my fears, the message is important.
I hope to help others understand how autism has affected their own lives, and mean time I continue to try to find a way to overcome the way it affects me as well.