Diagnosis attempt # ???

How things change overnight!

Yesterday I woke up depressed, it had been weeks since we got the phone call from the kind doctor who had begun my diagnosis here in this state, but had become so sick that the work was discontinued.
I have been full of anxiety and hope, dropping to despair as it became evident from his website stating that he has retired in July, and from the formal notice from his lawyer just before he phoned us, that he was not working any more.
The final appointment would not happen.

His ( Dr) lack of calling us back after a phone call to his office as he had directed, plus an email 2 weeks later had no responses.

I was sure this was a case of the good Dr’s health interfering and perhaps he might have more “want to” than “can do”.

Yesterday morning I gave in to the blues and felt sorry for myself and discouraged, determined to look only toward the July 2020 appointment already on my calendar with the Illinois Dr who is a well known author and who I am sure understands autism in adults/elders.

Yesterday while I was out of the house running errands the kind doctor called again.

My husband set up an appointment with him for the end of this month Sept 2019.

I am in shock. Afraid to feel hope or relief. I don’t handle sudden transitions that well, even if they are positive.

Dr said he has good days and bad days but wants to go ahead and finish this diagnosis as his health allows. We are to call or he will call a few days before the appointment this time to confirm that he is well enough to proceed. So many emotions whirling around inside me, so many seeds of hope afraid to sprout, so many doubts that this will finally actually happen, so many worries about “what if he tells me I am not autistic”???

and so on.

Sudden changes and arrangements needed! Let alone the arrangements needed to get downstate, hotel reservations, dog boarding, etc. Thank goodness I have my very supportive spouse to lean on. The days are going to drag now until appointment time and I will have a difficult time concentrating on much at all until I finally know.

I am hoping I can get rid of the diagnosis labels the first neurologist gave me , and not be saddled with those throughout the end of my life. I can see where I might end up being drugged and worse if I am ever hospitalized or must have nursing home care. One look at that chart!!!! Saddest of all is that so many older autistic people with struggles are misdiagnosed every day and some spend the rest of their days in conditions such as I just described. Younger autistic women are frequently misdiagnosed as Borderline or Bipolar and treated with psychotropic meds which do little or do damage to them in countless ways.

I am working hard on a series of descriptions and questions to help identify older adults with autism. I have spent countless hours on the internet looking at studies, at current test forms, at the DSM V , and many more hours reading blogs and interacting on a few forums /online internet groups.
I have asked a couple of these groups to collaborate with me and give input.
Each group has over a thousand members and I have gained much good insight and feedback.
The final description of adult autistic recognition and questions to ask to help understand if one is autistic, will be posted here as soon as it is finished.
The reason I do this is because so many of the diagnostic criteria and the tests and forms available to diagnosing medical entities today are aimed at diagnosing children.
Very few autistic adults present now as they did at age 4, 9, or 12, or even 25.
We learn to adapt, we exchange innocent stims for hidden ones or more socially acceptable behaviors. We adjust ourselves in many ways to try to fit into the world, masking skills probably increase for many of us as we age, but the underlying neurology remains the same and our struggles are real and often overwhelming.
A look “below the surface” can tell the story we have worked so hard to hide.
Knowing I am autistic has changed my life in countless ways, all for the better. I hope presenting these traits and questions will be useful to somebody as a help in finding undiagnosed autism in the elderly.

My own official diagnosis is pending. I hope I can help others find peace in knowing that autism was behind so many of the struggles and the pain of the earlier years in life.

Autism in the Elderly population

How many people are we talking about?

I started wondering yesterday just how many people in the US population 65 and above were likely to be autistic. I have used statistics from the Washington DC based Population Reference Bureau( PRB) to try to figure this out.
According to PRB there are currently 52 million adults over the age of 65 in the United States as of 2018. Our life expectancy is 78.6 years.
Using only these figures and not adding all the missed diagnoses and undiagnosed people under the age of 65, and using the often quoted average of 2 percent of the population as being autistic, I came up with at least 1,040,000.
That many adults may be considered to be Autistic without diagnosis, although of course some of us are now finding diagnosis as autism and its hallmarks are becoming better known.
If we add in the population of adults who are younger than 65, to include the adults from all the years before 1980 when autism was first listed as ‘infantile autism’ in the DSM, you can see there is a need for diagnosis in adults now reaching middle age as well.
If you know 100 adults over age 50, you know at least 2 autistic people among them. My high school graduating class just celebrated its 50th anniversary. There were just over 200 people in the class ( 229). I know I was one of the autistic people in that class and I think I know of at least 2 others who, looking back, would probably be diagnosed as autistic. I wonder if they have any idea they are autistic, or if they still struggle with issues not understanding why, or having tools that could help. How many of us will end our days not ever being aware of why we struggled, never understanding the neurological condition that affects us every day and knowing our problems are not a matter of character, morality, goodness, evil, or inner strength, and never knowing that all our supposed/ believed/ blamed by family and society’s pointing fingers of shame…. never knowing what we think are our personal failures are not our fault?
How many of us need the tools that knowing about our autism provides? I know from personal experience how much better is life from the other side of autism and understanding how it has affected me, affected others through my behavior, affected my life, the choices I made, the things I believed, the things I do… everything looks different from this side of diagnosis. It has made a world of difference to me. I would love to know that others like me, even this late in life, could find the utility of new ways to live, peace and understanding that comes with diagnosis of autism.

Diagnosis Dance Continues

Yesterday I was not at home for most of the day. When I arrived, my husband was waiting with a smile on his face and a story to tell.

Husband received a phone call mid- morning from my GP’s office. They wanted us to know that they had tried to give GP’s referral to the Diagnostic Clinic in the other state and that the Diagnostic office was not making appointments until July of 2020. Did I want to go ahead and make an appointment?

Yes, Husband said, continue to attempt to make appointment. GP’s office said OK and that I should expect to hear from the out of state Diagnostic Clinic in a while for them to set up details, date, get info, etc. Who knows how long before we hear from them?

Then when I had properly processed and digested all of that, and was beginning to settle, my husband (secret self satisfied smile on his face) said.. “then I got another call”

It seems the kind psychologist who had been so ill that our diagnostic session in July had to be cancelled was on the phone, wanting to talk to me. When he learned I was out, he spent a period of time talking to my husband and apologizing profusely about the fact that we had not been notified about our previous cancelled appointment . Husband assured him that we were more concerned for his health than we were worried about the cancellation, Things like this happen. Then psych Dr told husband that he was ‘sort of back’ and that he wanted to make an appointment to do an assessment with me if I still wanted to proceed.
Psych Dr explained to my husband how we would go through joint and individual sessions of discussions about my behavior/traits, etc and that I might be given some tests.

Testing is to take 4 to 6 hours. We would get a written assessment at the end of it, no need to come back again, and further discussion at the end of assessment as well.
We want to do the testing and diagnosis procedure ASAP while the Dr is still strong enough. I know he is in poor health and has officially retired, and I wonder to myself if he sees me as “unfinished business” or if he is curious from a professional viewpoint… or what dynamic or motivation has set this in place… I have no insight into other people’s thinking. But regardless of the motivators, I am profoundly grateful that the good psych Dr decided to contact us, to reach out despite his circumstances, and is willing to proceed.
I am to call him this coming Monday so we can set up a time for evaluation as soon as possible. I understand psychDr’s health is still very fragile ( not expected to recover) so trying not to get my hopes up. I feel stunned, delighted by the knowledge that the doctor is feeling better, that we have not lost him, and that he has actually invited me to complete my sessions with him at this time.
I will still set up an appointment with the out of state Diagnostic Clinic if they phone, as “insurance” backup in case we do not complete the interviews and diagnosis with Psych Dr as hoped.

I will cancel the diagnostic clinic appointment if we are able to complete with Psych Dr, and at a year out I will not feel too guilty if I have to do that. Many will be willing to take my place in line.

Feeling grateful, delighted that Dr is doing better and feeling stronger, and that I have another opportunity to get his opinion..Thankful that he would reach out to me in this way.

What an exceptional man! Feeling so lucky/blessed/ encouraged today. Things like this only happen in story books, don’t they?

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.

WHY?

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

https://theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

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.
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Tomorrow I will be asking my GP for a referral to another autism specialist. Anxiety building. Subject /topic for a new blog page soon.