First attempt at diagnosis

I began by contacting the Community Mental Health agency here in town, and asking if they knew of any local doctors who worked with adult autistic people. No

I asked at all the local psychologists offices. No

I searched the network which my GP is part of. No

I searched the internet. I found several listings for autism clinics (called and all were based strictly on 18 or under. I found a teaching hospital with an autism clinic… only for 18 or under. I found a few doctors listed, and a couple of agencies which seemed to support autism. One was the Autism Society and another was called Autism Alliance. I found a list of providers who worked with autistic people on the Alliance page. I copied it for reference. I also PM’d the Society asking about doctors know to work with adults. I got a PM back from the secretary. No formal list but one named doctor had diagnosed her as an adult though his usual practice was under age 18.

I began calling the referred numbers on the list of 10 providers in state which worked with atusim . Out of 10 there was only one provider whose screening appointment desk assured me their doctor had much experience with diagnosis in older people and especially with women. All others had said they accepted only 18 and under. Even the majority of doctors listed with this one were on the page as 18 and under.

This doctor’s specialty was “dementia and alzheimer’s screening”. I asked again if he had experience with the autistic population. Yes, he did hundreds of screenings per year. WOW that sounded right to me. They would work with my insurance. I signed up with that neuro- psychologist and anxiously waited the 6 weeks until the appointment.
We boarded the dog and my husband came with me, the appointment desk had said the Doctor would want to talk to him too.

We got a room for the night so that we could appear first thing in the morning. We were told the testing process could take between 5 and 8 hours, so we had a room reserved for that night again.

The doctor was half an hour late. He asked what brought me to him, and I explained how hard it was to find a doctor who would screen for adult autism and how we had landed with him after my long search, and how relieved I was to know he had experience assessing autism. ( note, at this point he could have said something about diagnosing autism but he did not).

“what makes you think you have autism?”

I explained how I had taken the online test and did research on autism for over a year, and that nothing else seemed to explain the struggles of my early life as well. He snorted when i made the comment about researching online. He spent a total of 20 minutes interviewing us, asking intense questions about my one desperate suicide attempt almost 40 years ago, even though I assured him I have not been suicidal since. He never spoke again to my husband but gave him a brochure to fill out that my husband said was aimed at childhood behaviors (husband had not met me until i was age 30). Tests were administered and I was exhausted by the end of it.
Doctor did not speak to me again but I was informed that he would see me again in two weeks for the test evaluation and summary. I was expected to appear in person, although we both had requested to learn the details over the phone, since it entailed traveling 4 hours one way to come to his office. He refused that request and said I must come to the office. I waited on pins and needles for the next 2 weeks, wondering if his snort had been contempt or because it was typical autistic behavior to do loads of research on any interesting subject.
I was told within 5 minutes of the assessment meeting that I could not possibly be autistic because I could communicate, do an interview and hold a job, had a husband and a family, and was aware of having been bullied all my life. Autistic people do none of those things, ( !!!).

I was told I was passive aggressive and would resist treatment but that I should really get therapy because of my problems. My passive aggressive behavior was the source of the bullying I had experienced all my life, I really needed help! All this from a 20 minute interview and a few multiple choice questions in some of the forms of tests I had filled out. It was also recommended for me to be assessed for suicidal behavior and to take a drivers test to make sure I was safe to drive . I had told him I was clumsy and had trouble with depth perception. (I hold a driver’s license for my state, passed the test easily and have a great safety record, not even a parking ticket in 10 years).

I was shocked to say the least. Stunned.
It took a long time for the results to sink in, and then I was filled with despair.
I knew that it was not true that autistic people do not hold jobs, have spouses, are not capable of recognizing they have been bullied, etc..
Every reason he used for ruling out autism was false by what is know today.

This may have been what he learned in college in the early 1970s. The understanding of autism has changed since then.

I felt I had been sent to this doctor under false pretenses, and indeed, in that exit interview, in questioning him about his other autistic patients and repeating what his appointment desk people had told me about his screening experience, he said yes he screened up to 300 patients a year and had over 600 in his care in institutions etc in the area. He said he had never diagnosed a case of autism. !!!!! ” it just doesn’t come into it”. ( ???)

Thinking about the emotions that rose in me and left me stunned at this 40 minute exit interview (which I had driven 4 hours to alone and which I was going to have to drive 4 hours back home immediately after finishing the interview) still leaves me emotionally at a loss… I can not even explain the shock I felt, the disappointment, and the frustration of having thought I found somebody who understood, received assurances from his office, and the feeling of having been defrauded, tricked, and finally disparaged… I drove home safely but remember little of the trip. I was thinking of what might be next. I did have a few alternatives, I thought. more soon.

4 thoughts on “First attempt at diagnosis

  1. A link to this post should always be the response to anyone who ignorantly criticizes self-diagnosis. I doubt that most people even go to as much trouble as you did to get a diagnosis. And then to be blindsided by a so-called expert!

    Liked by 1 person

    1. I am still searching, more to the story in posts soon! Thanks, I think the experience of assessment failures is very common, especially for adult women. Hoping that raising awareness will pay dividends down the line.

      Liked by 1 person

  2. What a horrific experience! Unbelievable a professional would treat you so poorly!! And yet, you persisted!
    This truly is your calling, Debra! You have so much to share and do it so well!

    Liked by 2 people

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