Learning a New Way of Life After My Adult Autism Diagnosis | Organization for Autism Research

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This blog was originally posted on The Mighty and is re-posted here with the author’s permission.

Three years ago, I was diagnosed with Asperger’s syndrome.

I am now 48 years old and learning a new way of life, a way I should have always known but didn’t. I have had a particularly hard time finding resources dedicated to the specific issue of late life diagnosis of autism spectrum disorders. The situation carries with it some very unique circumstances, and most of what’s out there for autism support centers around children or adults who have known they had autism all along.

I was diagnosed at the age of 46. Since my initial diagnosis, I’ve been thorough a number of stages of acceptance of the condition, almost like the classic stages of grief, and it’s still an ongoing process. I’d say the first stage was a sort of denial. I did not seek out a diagnosis of autism. I was just wondering why I was like I was, and after being misdiagnosed (more accurately partially diagnosed) with other conditions such as generalized anxiety, depression, and attention deficit disorder, I ended up being referred to a neuropsychologist. After about four to five hours of tedious (and seemingly irrelevant) tests, I was left to wonder while the results were tabulated, however that’s done. When I finally returned for my diagnosis weeks later, I was told a whole list of all these fabulous things I could have been, had my teachers and parents known how to accommodate my issues, and had I known how to work around my own deficits.

But we didn’t have autism back in my day! (sarcasm)

The way it was presented to me was upsetting. I was being made to feel once again that I’m not as good as could be expected, but for a new reason. It was not made clear to me that autism was actually even part of that diagnosis, until a counselor I was seeing read the neuropsychologist’s report which included a diagnosis of Asperger’s syndrome. I was so put off by his delivery that I could not even bring myself to read his diagnosis and interpretation of the tests.

After that understanding, I was somewhat frightened. I really had no idea what Asperger’s syndrome was, and unfortunately my knowledge of autism as a whole was very rudimentary and (in retrospect) pretty much dead wrong. I understand now what awareness campaigns are about. I am aware that people get breast cancer and heart disease, but though I was aware people “got” autism, I had very little idea what that really meant.

Over the last two-and-a-half years, autism has probably been my primary “special interest,” a term you will hear ad nauseum (among others), if you have not already. I have read and studied about the topic, and I know I have still barely scratched the surface, which is frustrating for someone like me who wants to be thorough in most everything I do. In retrospect, it’s hard to see why I hadn’t known earlier, now that I know what I know.  Don’t be upset with yourself for not knowing. Does a fish know it’s wet? The more I learn, the more I relate, and the better I will eventually understand how to face certain issues that have become less and less tolerable to me over the years as I’ve approached a sort of burnout stage.

I reached a stage of acceptance after realizing I had spent all of my energy basically pretending to be someone else for most people I would encounter in my daily life. I was a retail manager, and I even sold cars at one time! These are not typical jobs for autistic people. I am currently a specialized mechanic of sorts for complex rehab mobility equipment. The work makes better use of my abilities, but it’s still fraught with challenges, which I’m trying to learn to face or change if possible.

I even started a small social media group of people who were also diagnosed as adults, and we share with and learn from each other most every day. It has been a relief to know that other people are like me in many ways and to have “found my tribe,” as it’s often said. I hope to share that relief with those of you who are experiencing similar circumstances. We’re out there (polyentendre).

As has also been said many times, but still not enough, “If you’ve met one autistic person, you’ve met one autistic person.”

Now you’ve met me.


About the Author

Timothy Kiley is an adult on the autism spectrum who wants to advocate for knowledge of and support for adult diagnosed Autism Spectrum Disorders.

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