Autistic Anniversary

Happy anniversary to me!

About this time last year I was finally certain I am autistic.

I joined several online autism groups and began asking questions.

I was amazed as I discovered so many things I struggled with were “like that” because of autism. I am still learning about ways I have been affected, and each time for just a few moments I wonder… what would I have been like, who would I have become, if I had not been autistic?

Other older people have commented that getting a diagnosis nearer the end of your life than the beginning is a shock. Many have compared diagnosis at this age (I was 65 when I first suspected I was autistic, and age 66, when I was certain.) to the grieving process.. Shock, denial, bargaining, grief, anger, acceptance. I have now completed my first full year of knowing my diagnosis. I have gone through that cycle over and over.

It is popular in some autism circles to speak of autism being a gift, or simply another “operating system” rather than a handicap or a disability. I am firmly on the side of its being a disability. I have struggled with too many things in life that would not have been a struggle had I not been autistic.

Painful interactions with others top the list. Had I understood emotions, my own and others, and understood that I causing pain to others, had I understood that any correction or misunderstanding on the part of others was not a mortal mistake and been able to accept that, offer apologies and move on, much suffering of others and my own would never have happened. Perhaps I would have had friends and fewer failed relationships, and not always have been in trouble with people at home, in school, at work. Perhaps estranged family members would not be estranged. Perhaps my first marriage would not have failed. No way of knowing for sure, but perhaps.

I might not have gone through life afraid. I might have gone to college, might have had a profession. Alas, all too late.

The Best thing about finally knowing I am autistic is that now all of that other chaos and pain in life finally makes sense. I finally “get it” and can see how autism has affected every day of my life, and how it still affects me.

The huge difference is that now I can forgive myself and others, now I have a lamp in the darkness, I can see how autism surrounds me and encloses me, and also now, how I can smooth my own path and use new ways to survive and even thrive.

The growth this year in my personal understanding and the relief I have in finally knowing about autism is boundless. So many formerly impossible things are understandable and manageable in context of autism. So much that was perplexing, confusing, frustrating, and depressing is now understood and outcomes of any activity attempted are not presumed to be inevitable failure. What a relief to know about autism and that I have so many “new to me” options and outlooks!

Second Phase first attempt at diagnosis.

Having left the follow up session in absolutely stunned confusion, being told in no way could I have autism because of my ability to communicate, hold a job, be married, and be aware of having been bullied all my life… (autistic people don’t do that) I was both shocked and simultaneously frustrated, disappointed, and dismayed.
I was just sure that the answers he gave about my autistic state were wrong… I knew that autistic people could communicate, could work, could have relationships, and could know when they were being bullied. The ideas the Dr quoted to me were from the late 1960s when diagnosis criteria were completely different. Still I questioned everything about my life up to that point… could I have got everything that wrong? How else could “everything” be explained, especially with the alternative diagnoses he saddled me with at that point. ??

I began to think about how to handle what I thought was a completely unfair set-up, where I was assured the doctor had much experience with autism, and in the end finding out he had never diagnosed a single person with autism.
I first sent him a letter (depending on his assurances at the exit assessment meeting that I could, and should, contact him with any questions once I received his written evaluation). Then I emailed him when there was no response. In both communications I requested further appointments to discuss autism, referring to the appointment desks’ original assurances that he was experienced with autism and diagnosis.
Barring more appointments with him, I asked for referral or joint or referred individual sessions with any child autism specialist in his practice- none of the others were willing to accept clients over age 18. (he is head psychologist over about 30 others, counselors and many specialists listed for autism, which was the reason I approached this clinic). It was listed as an autism resource on the “Autism Alliance” page I found on the internet.

No response for a month.

Next step was to contact “Autism Alliance” whose page clearly states that they are advocates for autistic people…. I thought they might like to know that the clinic they recommended was not helpful for people over age 18 and told them of my experience. Two things happened after my email to them… The next day I got an email from the Doctor saying he could not help me. I also got a phone call from Autism Alliance saying they had never had a complaint before, and that their providers were all carefully screened. Then they told me they would be glad to advocate for me and help me find another qualified provider who would be more helpful. I felt as if I had been heard and since they posed as advocates, I did not suspect what would happen next.

I got several phone calls and emails from Autism Alliance, all saying they were working on finding me a follow up counselor with autism experience who would work with me. I was gratified and felt assured the issues would be resolved and I would get a good psychologist. I was assigned my own personal “navigator” to help me find my way through the system.
They turned out to be a predatory insurance sales group who were looking for any psychologist or therapist who would take me on for a percentage of the referral fees.
It ended up that they tried to hook me up with one counselor in my area who would think of this idea as acceptable, a woman who only recently had renewed a lapsed “counselors” license which was either expired or suspended after a couple of years of practice as an infant therapist/art therapist, and who had a sociology degree.( the internet is amazing, all the things you can find if you dig around for a while!)

Insurance was not able to cover visits to this woman at all, but the navigator pressed hard in phone calls over several days. I would have to pay cash but I could get a discount! At this point I realized they were not looking out for my interests at all, but were “insurance navigators” who were in the business solely for profit as getting a cash percentage fee for referrals of any patients. There seemed to be no concern at all about fitting my needs or conditions, but they pushed me, “reminding” me that the diagnosis which the other doctor had given me recommended how much I needed therapy and that I should go!!!! ( it seems as if they had forgotten that his diagnosis was in dispute!) At this point I was alarmed as well as angry!

No thank you.

Please educate yourself about “insurance navigators”, who are definitely “for profit” groups which perhaps may do good for some folks but who were a complete disaster for me. In this case it appears their agenda on the website was quite hidden… and the thing that helped me is because I did not immediately assume they knew what was best for me. I knew the thing they were pushing me to do was not what was right for me, and I questioned why they were doing it. A little belated research and I had the answer.

I told them I no longer needed their services, that I had been able to find what I needed and thanked them.

After a couple more emails and another phone call, with my firmly repeating that I no longer needed their services, they subsided.

I count this a lucky escape, and warn others needing medical help of any sort to be alert when you hear that word “Navigator”. When I once again gather my emotional resources and quell the anxiety this brings to me to re-live it all, I will continue with the ‘next chapter’ in my search for diagnosis.