Struggle, Diagnosis, and Cure

[Originally published here on January 16, 2020]

CW: this post discusses ADHD, autism, anxiety, diagnosis, and disability

👋 Hi, friends. Little life announcement here. Thanks for reading and for your continued love and support.

So…what’s up?

Some of you know I began the lengthy process of neuropsychological evaluation in the fall of 2019. In October, I completed a 2-hour long interview with a Neuropsychologist, and on December 30th, I spent 7 hours completing a range of neuropsychological tests. The impetus for seeking this testing was the significant amount of struggle I experienced during my first semester of graduate school. Struggle here includes inability to focus, difficulty starting tasks, paralyzing feelings of overwhelm, increased perfectionism, sensory overload, intense frustration even to the point of physical pain, inability to do even basic tasks (washing dishes, going to the grocery store), and a variety of other things I’m happy to elaborate on if you have questions.

This week, I received an official diagnosis confirming my suspicions: I have Combined Type ADHD (complete with both inattention and hyperactivity or impulsivity), and I am also autistic. I have ‘high functioning’ autism, or what was previously known as Aspergers. More specifically, I am what psychologists refer to as ‘2E’ or twice-exceptional. This means I am both ‘exceptionally gifted,’ and ‘exceptionally disabled.’ Such a strange combination of words. What this boils down to in my case is that I have what is classified as a “very superior” IQ (which I put no stock in as IQ tests are ableist and have roots in racism, classism, and a host of other things I don’t support or subscribe to), and I also have exceptionalities relative to my same-aged peers. For me, those exceptionalities manifest in ADHD and autism.

I wish I had something profound and nuanced to say about being 2E or living life with Autism Spectrum Disorder and ADHD. The truth is that I don’t. I have so much to learn and unlearn about the names I now have for my nearly 30 years of lived experience. In many ways, I feel like I’ve been waiting for these diagnoses all my life. I also feel both grief and relief, and I have a lot of work to do to build an environment and routine that supports me the best way possible.

A few notes in closing

  1. Autism does not need to be cured or eradicated. There is nothing wrong with me or other people with autism. Avoid getting your information from organizations like Autism Speaks. People with autism have different brains than people without autism, and none of this is a problem that needs to be solved. Vaccines do not cause autism. About 15–20% of people with autism do not communicate verbally. It’s very likely that you know someone who is autistic, even if you think you don’t, because most autistic people do not match the stereotypes you’ve been handed down by popular media
  2. There is a fascinating body of scientific literature exploring the links between gender non-confirming people and autism. Depending on what research you consult, a significant percentage of gender non-confirming people exhibit traits of autism, and there may be a link between gender dysphoria and autism. If you look into this research, I encourage you to resist the impulse to link gender identity to biological markers such as neurodiversity or brain structures. I haven’t read these books and therefore cannot endorse them, but Gender Identity, Sexuality and Autism and Supporting Transgender Autistic Youth and Adults have both been recommended to me as good sources of information for those who are curious
  3. Results from my neuropsychological testing revealed my anxiety levels rank in the 97th percentile (and that’s on Zoloft). What I want you to take away from all of this information is that I struggle in real and specific ways, but I also have friends, a loving partner, a successful career, and so much else. I own a home, drive a car, attend graduate school, get straight A’s, and appear “functional” in all aspects. Much of what I struggle with is masked. Take this as a reminder that disability looks so many different ways. Be patient, gentle, and loving with those around you. We never really know what pieces and parts make up the whole of a person, and it’s best not to make assumptions about what someone can or cannot do, be, say, accomplish, etc. given their status as a person with a disability

If you have questions for me, I’m happy to do my best to answer them. For anyone curious about my testing process and how they can seek similar testing for themselves, I am also more than happy to help you navigate that. I welcome recommendations for organizations, networks, skills, coping mechanisms, etc. related to living with ADHD and/or autism. Lastly, to my friends and family, I love you! Thanks for being on this journey with me. ✨

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