Preparing for the assessment
In 2022, I took a deeper dive into the research of Autism traits and characteristics in hopes of finding answers for myself and why things have gone the way they have throughout my life. After meeting more of the faces of Autism through my work as an RBT (ABA therapist), I further suspected that I was Autistic myself and came to the self-realization that I am indeed Autistic.
I read studies, research journals, articles, blogs, books, and watched Youtube videos to have a better understanding of Autism, particularly in those who are AFAB (assigned female at birth). I asked my family questions and had my mom fill out a document from the assessor. Her memory is not the best so she was not able to complete the document for me. I recollected as many memories as I could and analyzed both the memories and my present-day self in order to better understand the reasons behind my behaviors and to discover that many of my behaviors have been overlooked throughout the years and are indeed Autistic traits.
With this information, I compiled a 6.5 page document complete with the DSM-5 criteria for Autism, corresponding traits, and lists of other traits as well as specific topics like meltdowns & shutdowns, self harm, executive dysfunction, etc. I also brought with me to my assessment documents from observations on me during my seconds out of 4 inpatient hospitalizations.
The night before the assessment I drove 1.5 hours to my hometown to spend the night at my parents’ house. The next morning I left just after 6am to drive 2 hours to the assessment. As I approached the light to turn to my destination, I was giddy with excitement. I had finally made it! I had never been so happy to spend $850 on something intangible, yet so meaningful to me.
The Assessment
At my assessment, there was a second person sitting in to observe the assessment and fill out his own ADOS-2 booklet and take his own notes. They first asked me questions like why I thought I may be Autistic. I basically said because of the 6.5 page document I brought with me, with all of the reasons why that I could pinpoint myself. The first activity of the assessment was a puzzle.
Now, I won’t be going into too much detail on these activities because when readers have their assessments, I’d like for them to know what to expect but not attempt to decide how to respond to the activities when they are in that scenario themselves. I had already read about some of the ADOS-2 Module 4 activities before my assessment and I specifically avoided preparing for the assessment in any way. I wanted to walk into it with a general idea of what to expect though.
The assessor had me look at a photo and describe it in my own words, and then gave me another to describe. They had me “read” a book with no text to them, and the assessor actually “read” the first page of the book. This was actually a big struggle for me. I also struggled with the puzzle in a way that was unexpected to me, but I was able to complete it, albeit in a way that makes me laugh. The assessor gave me 5 or 6 picture cards, sequenced to tell a story. She asked me to tell them the story, which I did. Then they asked me to stand up and present the story to them. They also had me take 5 items out of a bag and tell a story with them. I also struggled with this and ended up playing with a toy car in order to tell the story, making crashing noises and all.
There were tons of questions during the assessment. I was asked to describe how emotions make me feel, if I’ve exhibited aggression, what was the antecedent of all of my hospitalizations (rejection from a significant other every single time), how I feel about germs, how I would describe a friend, if I have any friends, questions about bullying targeted at me, and so many more that I can’t remember off the top of my head.
At the end of the assessment, they asked me to wait outside the room for 10-15 minutes while they added up the ADOS-2 scores and had a discussion. 40 minutes later, I was invited back into the room. They told me that I am indeed on the spectrum and that some of the things they noticed through observation was my vocabulary and broken or lack of eye contact. They also told me that I did not engage in reciprocal conversation, which I felt like I needed to apologize for. The assessor mentioned things she had done recently that were fun and mentioned her children, but I never asked about them once. I only answered questions and talked about my own experiences.
At the end of the assessment wrap-up, I asked again for clarification, “so I’m autistic?” And they again confirmed. I sat there with a flat or blunted affect, as I do feel relieved, overjoyed, and enthusiastic about finally getting a diagnosis at 33 years old. But for some reason I wasn’t able to express that at the time and my demeanor just looked neutral or blank. Funny enough, that’s another Autism trait.
After the Assessment
It’s been 4 days since my diagnosis and I’m still processing things and will be for a while. I only have positive feelings about it though. Many of my feelings right now are a bit indescribable. I already knew that I’m Autistic, but to hear it from the gold standard assessment and 2 assessors hits you differently. I feel validated to finally have the answer I’ve been looking for and wondering about for all of these years. Everything makes so much more sense now. I will be working more on unmasking as well as affording myself any necessary accommodations I need.
“Coming Out” as Diagnosed Autistic
The first person I told was, of course, my boyfriend. He was excited for me and told me congratulations. Some people at work were happy for me and some seemed taken aback and appeared to struggle with how to respond. I guess I can understand that. My mom said “wow” and I’m truly not sure how to take that. But I suspect she may be on the spectrum as well and I’m 99.99999999% sure my brother is as well. Hopefully the next step for them will be to get him diagnosed, as it’s been a long time coming.
The Journey of Unmasking
In my next blog I will write about how I’ve begun to unmask and covering methods to help with unmasking.
Where are you on your journey?
What have you found that helped you prepare for your assessment if you’ve had yours?
❤ Lauren