Finally a diagnosis!

Why is diagnosis important?



In conversation on a forum today we discussed the difference our lives before and after
diagnosis.

I said “learning about your autism is like reading your own biography but with the lights turned on instead of trying to see and understand the pages in the dark. ” I was so pleased with that analogy I thought I would share it here.

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.

Random musings from autistic old lady

Not my usual single topic page

There seems to be more interest in stress as related to Autism.
It seems there are tests showing that autistic people generally have more stress hormones such as cortisol in their systems. I am beginning to dig into the reports and studies. One thought is in my mind. Chicken/egg??? Is it reactions to dealing with autism symptoms which the cause of the stress, thereby causing release of hormones or are the hormones that are being found somehow controlled by the autism itself ( and therefore a symptom in its presence alone, even without stressful circumstances which usually cause release of the hormones) and might cortisol and other stress hormones in certain proportions or quantities be found to be a biological marker for autism?
So far all the tests seem to have been done under what might be stressful conditions to any autistic person, enough to cause the release of all those hormones they measured. Much remains to be seen. Watching with interest.

I want to report a great experience with the medical community regarding autism diagnosis. I have reported throughout this blog some of the struggles and miscommunications in my attempts to gain “official medical” diagnosis.
This time was different.
I have been referred to an adult autism diagnostic clinic in another state. My GP’s office had prepared me to expect an appointment next year (proof of the high demand for adult autism diagnosis) and I was duly contacted on the telephone by a clinic representative.
The phone interview was conducted by a person who spoke clearly and enunciated precisely.
She stated clearly her name and her title, and the name of the clinic she represents. She gave me time to respond without feeling pressured.
Most of the questions asked were to confirm the usual facts about birth date, insurance coverage, etc. Those questions were posed so that I could respond with yes or no. No open ended questions!
Even the final question regarding my problem (the reason I wanted the appointment) was set up to give me a choice of answer so I could choose a correct response rather than try to figure out exactly what information was wanted and then have to produce it under pressure of the caller awaiting response. I was given a choice of A, B, or C . Wonderful!
The caller explained the next steps and told me exactly what I could expect to happen. It only took a couple of minutes but it was handled perfectly, and in an autism friendly manner. I feel as if progress is being made!

I called the doctor who had offered to complete my diagnosis on Monday, as he requested. Today is Saturday. No response so far. His website says he retired in July of this year. I am feeling a bit confused. But perhaps I am just too anxious. Time will tell.

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?