The picture above was found on Unsplash, after I entered “autism” in the search menu. It looks nothing like me, as I am a 40 year old woman. But somehow it manages to capture exactly what I felt like as a child, struggling with my undiagnosed nuerodiversity, lonely, eager for company, desperately trying to not get lost or abandoned, yet surrounded by beauty.
So many times as a child and as an adult, I had to find my own way, make my own path, while feeling left behind, lost, isolated, in the proverbal lonely forrest of the world around me.
It’s been eight weeks since a psychologist concluded my evaluation for ASD, it will be another two weeks until my appointment with him and I learn the results. He already has made his decision, his diagnosis or lack of one. He made it clear I might also be diagnosed with another condition, such as a mental illness or another disorder.
“Autism is very much a diagnosis of exclusion” he explained to me. He had to assess me for a variety of conditions to rule my symptoms out to them. It was a long, intensive, and dare I say thorough process.
This time right now, will not last for much longer. It feels precious, unsettling, and frustrating. I would love to just know once and for all after he reached his conclusions, instead of waiting for 2.5 months.
Still, there’s a lot to be learned, a lot of self-reflection and insight I can gain right now, from not knowing and what that feels like. An unsetteling state of anticipation, of wishing for clarity, a time of guessing, but also my last days of ignorance, of innocences, of learning to accept whatever outcome he may have. This is a time to learn about my openness to reflect on who I am, what I’ve been through, what all of this means.
The assessment was in depth, and it alone brought me a lot of relief. The psychologist talked to me for hours and hours each day, for many days, over a period that lasted 3 months, and that was just the intake. He asked me questions about things no one else had talked to me about before. Things that I had wondered about myself, that I was confused by and wanted to talk about, wanted to understand, but my whole life it seemed no one wanted to listen. It was like he read my inner diary of concerning behaviors I have had my entire life and brought it all up to me on his own account. Issues I had wondered about, wanted to understand better, but everyone around me had dismissed it as inconsequential, or worse, a personality trait of mine. But he seemed to care about these things, and he was a medical professional, able to give me sound, medical feedback. The assessment alone felt so validating, that when it was complete I found myself feeling a joy, a release, a freedom of being seen and an easing of my long-lasting depression. Someone listened to me, gave weight to my concerns, and made space to talk about it.
“I don’t want to imply anything or make assumptions about your family, but I am curious, given all these issues, did no one think of getting her assessed as a child?” is one of the many questions my assessor asked my sister. As part of the process, the psychologist interviewed my sister, as well as the therapist I have been seeing for the last 12 years. I know because she and I are quite close and she told me all about her interview. She also felt validated talking to my autism assessor, she said he asked lots of questions about concerns around me that she had spent a life time wondering about.
My therapist didn’t reveal what he asked, but instead gave his analsys as fellow mental health provider. According to my therapist, my assessor is clearly a skilled psychologist with quality interview and psychotherapy techniques.
Often I imagine about what my therapist may have said to my autism assessor. He probably said something along the lines of how I needed to move far away from my family of origin, and create a new life for myself, one full of accepting, open-minded misfits who accept me for who I am instead of trying to fit me into a pre-ordained mold, and that’s okay. I’m assuming he said something like this to my assessor, because it’s what he’s been telling me for the last decade now, among other things of course.
“My therapist suggested I get evaluated for autism” said my girlfriend two months ago. “What do you think?” she asked me. I told her yes. Since meeting her I have strongly suspected she has autism, in fact it feels obvious to me. So much so that sometimes I worry being close to her I will unconsciously pick up her social deficets. But I decided long ago it’s worth it because the way she communicates feels so safe to me. I’d rather have safe communication in a relationship than just about anything. She’s worth it.
“Do you think my results will come back positive?” I asked her. “Do you think I have autism?” I asked her. She seemed hesitant, and asked me if I really wanted to know. I told her yes.
“You have it, the results will be positive. I didn’t want to say anything, but I’ve noticed a lot of flags for it, from your lack of eye contact, to the way you behave in social situations, I’m not an expert or anything, but I believe you have autism.” she explained to me.
Last month was my 40th birthday party, and I was so excited that no fewer than 11 people, most of my closests friends showed up. One of them, a close friend of mine, is the about same age as me and has been diagnosed with autism, though her diagnosis didn’t come until she was 30. Four other women, including my girlfriend, suspect themselves of having autism as well.
“Why get assessed?” asked one friend of mine, who I have long suspected of being on the spectrum. “I think I probably have autism, but I’m doing fine in life. I don’t need to know.” Another friend of mine, who I also suspect is on the spectrum, said the same thing. I have my reasons for being assessed, it is the right move for me. They can make their choices, and I can make mine.
About 10 years ago, I realized I have a tendenacy to befriend autistic women. This started in high school, when I became “best friends” with an interesting girl in my art class that I couldn’t leave alone, even though she weired me out to the point of discomfort, she was so interesting, and I felt more comfortable around her than anyone else. As we got close, she revelaed she had autism, at the time the label Asbergers was still being used. I was drawn to her years before I understood or really knew about autism. I had always been drawn to autistic women.
At university, I found this woman who felt so interesting to me, I overheard her graduate level theoretical calculus conversations in the math common room and thought she was so cool. She dressed like me, in long sensory-friendly floral skirts, thick black-brimmed glasses, and lose t-shirts. She moved like me, head tilted just enough to avoid eye-contact with strangers, long hair following behind with a slight lean forward. She was perfect, she felt like a sister I was missing. I may have freaked her out with my eagerness when I approached her, but we still were friendly. Years later she “came out” on social media as being diagnosed with autism, and suddenly it made sense why I liked her so much.
A different question is coming up right now, and I don’t know how to phrase it. Perhaps, what is my relationship to autism? Because even if I am not autistic, I seem to have autism in my life. Autistic women feel safe, comfortable, and I’ve long sought them out as friends, this is usually before I know they have autism. It should also be noted I am a teacher who works with a variety of disorders, but does very well with ASD students. Maybe there’s some other reason I feel comfortable and relatable to autistic women. I strongly suspect my father of having autism, and enjoyed a close relationship with him growing up. We would sit around and talk about science, math, history, literature, and more interesting social skills. He taught me different rules of social engagement. How to make small talk, how to make people talk about themselves and listen, when to make eye contact during conversations, how to look at someone’s forehead if eye contact felt to intense, and other tricks. He understood social skills had to be taught like any other topic, and not just picked up in context.
So many signs seem to point to yes, I have autism, but I can’t be sure. A diagnosis would explain so much of my life, of my experiences. However, I’m not married to the idea. I know there is something here, something that had made me feel different my whole life, something that makes me seek out the company of autistic people, something that made me feel so alienated and lost for so long. It doesn’t have to be autism, and not getting an autism diagnosis won’t erase the struggles I’ve lived with my whole life.
It could be what I have, has no diagnostic right now, that there is no name for it yet, it hasn’t been studied. It could be I have a different mental-illness or other condition that isn’t understood or studied, and for whatever reason autism feels safe for me. Regardless of the diagnosis, I can give weight, hold space, and awknowledge the trauma I went through as a child dealing with the friction between how I worked and what the world expected of me. Something was there, and it was painful and hard to be that misunderstood and different.
At the end of the assessment, I asked the psychologist if this was a good idea. If it was wise of me to get assessed for autism, or if I was just being being parnoid and wasting his time. So many people tried to discourage me from getting evluated. My therapist, my family, and my friends all told me they didn’t think I had autism, or if I did it was just a very mild case and not really noteworthy. It’s easier for them to dismiss my symptoms than me, I have to live like this after all, day in and day out, and what I do to fit in the world around me the sacrafices I have made to fit in and have my life. He responded with the following sentence.
“There are many things going on with you, which can’t be explained by your ADHD, or other learning disorders, so yes, it’s good you got it checked out.”
That alone felt validating. I guess I’ll know soon.
Thanks for reading.
