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?

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.