Diagnosis Do you need one?

I began to read blogs about older women (in their late 20’s and early 30s mostly!) who talked about the surprise of finding they were autistic at such a late age. I began to search for articles about senior citizens and autism, only to find that not much information was out there.

I suspected I had autism at age 65 due to taking an online quiz. It suggested that I might be autistic and that I should look into it. My curiosity was piqued… I had heard of autism but never dreamed I might be “on the spectrum”. I really didn’t even know there was a spectrum then!

Digging deeper I began to read scientific papers and to learn the diagnostic criteria used by current medical practices to determine if one is autistic.

Things began to make sense. I could correlate my understanding (primarily my lack of understanding!) to so many incidents, pains and misunderstandings in my past. I began to see how, IF I was autistic, these misunderstandings may have come about because of my lack of social perception and my lack of social skills, and my inability to make myself understood, or to understand others.

I finally decided with great relief that yes, almost every question about my failures and struggles could be answered by looking through the lens of autism. I was so glad to understand it was not my fault, that I was not the bad person with lack of character, selfishness, thoughtlessness, cruelty and deliberate meanness that others had accused me of. I never intended to hurt others, but i made them angry so often! I did not understand, and neither had they. How freeing!

Now I understood, I was able to examine all sorts of things in my life and try to figure out how to go forward with this new understanding. I have things I know I need to learn… I can work on those. Do I need a professional diagnosis? Not for myself. I do not need one to access disability support, nor do I need diagnosis to confirm what is obvious to me at this old age of now 67. I need no financial support, nor accommodations for work, thus need no official confirmation.

I would be happy to leave it there and use my new understanding to go forward in my personal life, self improvement goals, etc. However, I have a new passion. I realized in uncovering my autistic identity, that I grew up with an autistic mother. I was caretaker of my mother for the last years of her life, and watched her suffer in a nursing home with Parkinsons disease, dementia and of course, her un-diagnosed autism.

So many things might have been made easier if it was known she was autistic.

I wish to become an advocate for undiscovered elder autistic people. I wish to speak to the public about the hidden generations who have survived on their own with little understanding of their condition, blaming themselves for their shortcomings and misunderstanding their own lives through the shame and blame of others in all they do, not understanding their own emotions and their perceptions, surviving and struggling so much more than they need to because they do not understand their autism.

I want to help people in nursing homes and institutions who are needlessly subjected to the tortures of over stimulation or sensory overload and whose autistic behavior have been misidentified as psychotic disorders, etc.

In order to do this, I must have that little piece of paper that says to the world “I have been diagnosed as autistic” . In order to have credibility with the public, I must have socially acceptable documentation. So my journey has begun.

You may not need professional diagnosis, or you may need it badly to obtain needed support. There is no shame in not seeking a diagnosis, there is no shame in being diagnosed professionally/ officially. But in the USA, obtaining a diagnosis can be a struggle. More on this topic soon.