My Adult Autism Evaluation
I had no clue how to prepare myself, or feel prepared, for my adult ASD evaluation. For me, and for many other neurodivergent adults, feeling prepared relieves the anxiety of new situations. Feeling unprepared (in any situation) makes me anxious, nervous, fearful (at times), and can even initiate my flight response in certain situations. This whole crazy, out of the blue situation was heavy on my heart and on my mind, but I had already set my mind to going through with the adult autism evaluation I had scheduled and nothing was going to stop me, even though I had a couple freak out moments the week before questioning whether I should do this after seeing a few horror stories in my research. I had to come to terms with what was right for me and for me only.
You may wonder why I went through with the adult ASD evaluation. Deep down in my soul, I knew that I was autistic and I was already coming to terms with that (and would be doing that with man evaluation scheduled or not). Self-diagnosed adults are welcome in the autistic community due to a long history of errors (and I don’t say “errors” lightly) done to autistic children and adults from the medical community. On top of that, women are more likely to “mask” and hide symptoms causing doctors to overlook them for a diagnosis. Strapped with all of that information, I still knew a piece of paper wasn’t going to change what I already knew to be real and I knew there is not much anyone (especially in a medical field) can do for late-diagnosed autistic adults beyond therapy and education. Still, for some reason unbeknownst to me at the time, I felt a large need for an official medical confirmation. Maybe it would help me be more confident when I “came out” to family? Maybe the official diagnosis would release the “what if it’s something else” question? I’m not sure exactly why, but I suspect it was mostly because the situation I found myself in was shaping up to be one of the biggest life-changing events I ever had experienced and quite possibly ever will experience in my lifetime.
Due to me feeling completely anxious and unprepared, I asked the intake coordinator what to expect during the evaluation. Unsurprisingly, she didn’t tell me much beyond what I could gather on my own and explaining they would be giving me, my husband, and my mother forms/tests to fill out. I had non-stop racing thoughts beforehand and even barely slept a few nights before the evaluation. It became an obsession and it was the only thing I could think about. I was even dreaming about the evaluation (stress dreams of course).
A common coping tactic I have acquired over the years is to prepare for the worst. I was ready to fight and expected it all to go horribly wrong, but still hoped for a favorable outcome. There was only one favorable outcome. A professional confirming what I already knew was my reality. I needed a doctor to confirm that I am an autistic adult with ADHD. Since everyone, including myself and all of my many doctors, had always missed my autistic traits, what if this doctor did, too?
I had so many negative and racing thoughts heavily bouncing around in my mind:
Would I be met with resistance or talked down to, misunderstood, miscategorized, and I even worried I would somehow misrepresent myself during the evaluation? Yes, I was “pre-blaming” myself. (insert eye roll here)
Would I be dismissed and treated as if I am just over-thinking everything?
Would the symptoms I’ve experienced be minimized or “explained away” to other possibilities like my original ADHD diagnosis?
Did the doctor know autism presents differently in girls and women and has barely been researched?
Would he deny me a diagnosis because I’ve always made eye contact, run a successful business, have a family, and generally look happy to the outside world?
All of these were valid concerns as I had personally had similar experiences with doctors in the past. I was always anxious before doctor’s appointments, even if I knew how it would go, and this seemed to be the most important doctor’s appointment I had up until this point. It is common knowledge that women are not only missed in everyday life, but they are also told that they “do not meet the diagnosable guidelines”. I had seen, and continue to see, personal stories of women that were told they could not be autistic because they are “married and have a degree” or “were successful so they couldn’t have autism”… If only this world was that black and white.
The moment was finally here…
It was a hot Monday morning on July 1, 2019. I still remember the smell as I walked to my destination, the stench of the heat on the pavement oozed into my brain raising my anxiety. After I signed in, I sat down in the cold chair and shivered alone in the chilly, beige waiting room. The swift temperature change from stagnant heat to the wet artificial chill made me nauseous and added even more to my unusually high anxiety level. I had already self-diagnosed myself and I was completely convinced of the presence of autism since I was born.
I whispered to myself, “This is make or break time.”
It wasn’t a pep talk. It was my reality. An official denial from a professional would be a crushing blow, but I knew there were only 2 ways this was going to go. Since, I had already fully aligned my past, my identity, most of my personal struggles, and even some of my failures to the idea of being autistic, I longed for validation only a real diagnosis could give me.
The Ivy League doctor came out to greet me and invited me back to his office. He wore glasses and had a non-threatening stature. He wore khakis, white polo with the university hospital’s name where he had a psychiatric lab named after him, and brown leather shoes. As he signaled to welcome me into his office, I sat down in the comfortable chair. I wondered, as I often do, if he was as calculating as I am. Did he plan to have his patients sit initially in a cold and empty waiting room only to transition them to a warm and comfy office as a means to relax them? I soon realized I was overthinking every little detail because his first official sentence was to apologize if I “saw anything” because an employee had seen a mouse earlier that morning. I actually laughed with him and it ended up relaxing the tension and nausea I was experiencing. As he got his computer ready to take notes, I scanned him and processed what I had noticed so far. My first impression was that he seemed intelligent, gentle and patient and maybe even someone I could open up to. This was significant, since this was one of the first times I felt that way in a medical setting. As we began, he could tell I was anxious (I later noticed he wrote that in his report) and he assured me that we would spend around 4 hours together and I could get his “impressions” before I left. I told him I had written down all of the symptoms I found online that I felt aligned with. I had really done this in preparation because I have been known in the past to space out in times where sharing my own personal information is essential. That was the last thing I wanted to happen that day and he even thanked me for the list and closer to the end he told me the list was helpful to the evaluation.
It was calming to know that my careful and obsessive preparation helped.
In the next 5 hours, I would share everything I thought would be relevant. Every symptom, every struggle I could think of, family history, and anything else applicable to the diagnosis.
Before he told me his immediate impressions and my results, he asked me, “Why are you seeking a diagnosis and what outcome are you looking for?” That was a question I wasn’t prepared for and didn’t know to answer. I put the mask back on and gave an answer I thought he would want. He then proceeded to tell me it was his professional opinion was that I met the diagnostic criteria for a diagnosis of Autism Spectrum Disorder.
I should have been happy right? I don’t really remember what happened after that. I just remember feeling numb. It was now real.
On paper, I was now officially autistic and there was no going back.
What I wasn’t prepared for, was what would happen next. I was hoping I would align with so many women I had read about who felt validated and confident. The women who said they felt free to know that they were autistic and they could now be themselves, unapologetically. I did not feel any of that. What was wrong with me?
