I am losing track of the number

of attempts to find somebody who is competent and willing to provide a diagnosis.

Late last week ( Friday). I contacted the autism department of our state’s largest medical teaching school. The form required to be filled online included a space for explanation of my problem and what it was I wanted of the university.

The online form I filled out was set up in such a way that I could ask referral to psychology, neurology, or autism departments. It also gave an option for “I don’t know” ( which I want). I explained that I was elderly and was seeking autism diagnosis. The form asked name, email, and phone number and asked how I would like to be contacted.
I said that I would provide the mandatory phone number but because of processing and social issues my preferred method of contact was through email.

I enclosed a link to this blog which explains exactly why I want a diagnosis and how hard it has been to find somebody competent to do the necessary screening.
Monday afternoon we came home to a telephone message spoken rapidly by a soft voiced woman with some sort of speech impediment or speaking through a distorting phone speaker.. I had to listen to the message several times to understand what she said. ” She could answer all my questions, just call this number!”

I called yesterday morning to be confronted with an automated phone menu. This button for this department, this button to choose who to leave a message for, this button to call the operator… The caller had not left her full name, her title, or her extension number. I hung up.

After noon yesterday (Tuesday) I got a phone call from the same woman, a little easier to understand than her message if I listened very closely. I asked one or two very specific questions and was put on hold both times and made to listen to tinny wavery music of one finger plucking a piano very very slowly, to the point that i dreaded hearing the next note… I waited about 3 minutes the first time. No, there was no availability for such diagnostics there, but I could be referred.
Did they have anybody with experience in diagnosing the elderly for autism?
Any experience diagnosing or working with women? (I asked)
OH I was paying cash? My insurance was not acceptable (in system) for them but it would be around $2000. Just a moment please. (their focus seemed to be on getting payment rather than helping me get the services I needed, this is a rule rather than an anomaly, I am finding)

Back on hold. I hung up after 5 minutes. The plinky- tinny piano notes drove me to higher anxiety. Why in the world would they use that sort of music when putting somebody on hold for a psych department???? aaaugh!
She called back. It would be $3600 to get an assessment there, did I want to go ahead? No answer about my questions regarding experience, no answers regarding any of my own questions. No, never mind. “sorry about that”.

I am very frustrated ” sorry about that”
” You could try getting a referral from your doctor” ( Dr did not know of anybody nor did the huge medical association she works for have any Dr available for this).
“you could call your insurance company and they could recommend somebody” I had done this long ago and there was nobody in their system.
I said never mind, thanks, and just hung up the phone.
Another exercise in how to find somebody to help with diagnostic testing for autism. Or how not to. So frustrating and depressing. My autistic perseveration is coming in handy, I am not ready to give up yet.

I search the internet for hours, many days of the week, trying to find new (to me) information or perspectives on autism.
I recently came across a pdf. presentation from 2012 regarding the ageing autistic population and how the USA will be needing to prepare for us, about how to recognize us, and about those of the earlier generations who had no access to diagnosis as children or even young adults. I plan to contact the author of this pdf. It has almost everything which I want to cover and points I want to make in presentations. Perhaps if she is willing to spend a bit of time with me in discussion she will also have a name or two to refer me to for possible diagnosis. The search goes on. I grow tired. Time for a bit of self care, rest, and doing something completely different for a while.

One thought on “I am losing track of the number

  1. I can picture your opening statement in a speech being about how difficult it is/was to find/get a diagnosis. Would be a fitting way to describe the dark obscurity in which elderly autistic people live.

    Liked by 2 people

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