People frequently ask me whether I am glad I was diagnosed with autism, whether I am glad I know. One day, my daughter Emma spoke with my mom about my diagnosis. She later told me that my mom kept saying, “If we had known, things would have been different.”
That sentiment exactly mirrors how I feel. No question. I wish I had always known because things would have been different. Gaining the awareness that autism underlies the differences between myself and others didn’t change me, but it changed my life.
No One Could Have Known
How does that even happen that you can be 45 years old and receive this diagnosis? Didn’t anyone notice my struggles? Did everyone just think I was that weird? Did I compensate so well that no one noticed?
Very simply, no one knew because there was no way to know. Even if my parents had had me evaluated as a girl, there would have been no diagnosis.
Forty-some years ago, others considered me to be different, really different, but that’s about it.
Twenty years ago, a diagnosis would still have eluded me.
Efforts ten years ago would have probably seen the same result.
So how did I even get there?
I Was Just Different – Diagnosably Different
During a difficult period for my family, some of my kids struggled with depression and anxiety. I called and found out that their insurance covered not only counseling, but also a psychological evaluation. Locating a provider offering what I considered the necessary testing proved challenging but doable. I asked the girls to go.
“Sure,” they said. “If you go too.”
“Easy enough,” I thought, “after all, I am healthy. I have always been different, but I am not anxious or depressed.”
As my scheduled appointment got closer, my confidence began to wane. It occurred to me that my difference may be diagnosable. In addition, in my recent return to work, not all of the feedback I received had been positive. No one criticized my work, they criticized me.
“How,” I would think, “can I go to work every day wanting to serve and be helpful, wanting to make others successful, and yet people react negatively? How have I gotten so far in life and not had this happen before?”
Picking apart my experiences, I realized that few of the places I worked had been so willing to give such extensive feedback. Few of the places I had been employed or volunteered had been so sensitive to the things I said and so insensitive to my feelings.
I told a good friend and co-worker of the upcoming appointments, and he suggested I seek testing for autism. He and I worked closely together, and he recognized just how different were my thought processes. I decided to really take advantage of this testing opportunity to find out what it was that made me so different.
I Had to Communicate…
At my first diagnostic appointment, I struggled. Though I had decided to really try to explain what life had been like, I wasn’t really answering the questions in a manner that would benefit me. I was not sharing. If I wasn’t careful, I would lose this opportunity.
I don’t know what it was that caused me to open up (I think my diagnostician would challenge that word!) and share more than usual, but I did.
I shared the ways in which my childhood had been different. The feedback I was receiving from co-workers, while not fun to share, confirmed my childhood experiences, so I shared it. I shared that someone close to me thought I may have autism. I shared that autism exists in my family.
Some of my disclosures during my assessment included that I taught myself to multiply in the first grade because no one would teach me. I actually obsessed over learning this skill. My mom and my teacher lost patience with my obsession, explaining to me that if I was allowed to progress too quickly, I would become bored in later grades.
I shared that for fun as a child I would add the prices of our chosen shopping items at the checkout and try to beat the cash register in totaling our purchases – including the tax. My mom used to tell cashiers to wait before hitting the total button and then looked at me to give the total. (Seeing the looks on their faces as they realized I was right was always the best part!)
When asked by my diagnostician if this came naturally, I realized just how much time I spent practicing this skill. It did not feel like practice growing up, it was just what I thought about while playing.
…To Be Diagnosed with a Communication Disorder
While going over the results, my diagnostician additionally pointed out things like my too-quiet manner of speaking, that I asked virtually no questions and engaged in little or no social conversation during the diagnostic process. Frustrated and confused, I could only think back to how much I felt I had spoken and how much more than usual I had communicated.
I sat remembering how exhausted I had felt when leaving each testing session.
I received a provisional diagnosis of Level 1 Autism. Provisional, I was told, because of my age at the time of the assessment. The diagnostician indicated that though she had to include the “provisional” language, she was confident of the diagnosis.
I Learned about Me While Trying to Help My Daughters
Receiving my diagnosis was like coming home.
Finally, I could clearly see the path I had traveled, the missteps I had made, the reasons for successes and failures. I could relive all the awkward moments, the confusion, and the trials and errors and understand how, despite my best efforts, those events happened. I could also see the ways in which my character was built, my compassion for others grew, and my hard-earned wins accumulated as a result of my autism.
While I do feel that I have done a tremendous (by tremendous, I mean I have absolutely done my personal best) job compensating for my differences, had I known to what the differences were attributable and how they were perceived sooner, I feel like I could have compensated even more thoroughly.
My journey has no doubt been complicated by the fact that it was believed that autism existed only in boys. The questions on the evaluation given to me by diagnosticians just last year more than likely reflected research done on men and boys with autism, as little has even done to determine how to diagnose autism in women and girls. It is only now that that focus is beginning to shift and women and girls with autism are starting to be noticed. (I recently read a great article that explained this phenomena! It appeared in The Journal Gazette, “Autism in girls different, could hold clues.”)
Could I have been diagnosed earlier?
In the beginning, I thought it would benefit my kids to go through this process. In the end, I got the biggest diagnosis of all. Autism. Funny how things work out sometimes.