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.
Glad you were able to see the wonderful doctor and get some answers!
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thank you!
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So happy for you! This sounds like such a relief after so much time thinking, searching and hitting roadblock after roadblock. I will be interested in hearing the doctor’s advice about your goals regarding raising awareness. He sounds like an amazing person as well as resource and I can only hope his retirement does not mean his knowledge retires with him. Your experience obtaining a diagnosis is – sadly – better than most, because you FOUND someone with the needed expertise. But it’s because YOU were able to persevere toward this end. It simply should not be this way. It shouldn’t be this hard. I salute your self advocacy. There is so much to do.
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thank you. I agree that most older adults, especially women are more often mis diagnosed repeatedly. I have been so lucky and so thankful that this kind doctor reached out to complete the diagnostic process for me.
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So happy you had such a positive experience with the good doctor!!
Bee
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I’m so happy for you, it really is an eye opener on life and past events. But here’s to the future and learning how to be us and not a masked version💜
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