autism.html

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<article id="autism" class="content--wide blog-post fade-in-up-animation">

  <h2>My Autism Journey</h2>

  <p>Growing up my grandparents would take me down to ride the carousel in Watch Hill, Rhode Island. It was built in the late 1870s and has an exposed ceiling. My grandfather would brag to his friends that most of the time I wouldn't try to get the brass ring, no, I would just ride around staring at the mechanical linkages up above me - and this was a clear indication that I was going to become a brilliant engineer, <i>not</i> that I was simply enthralled by moving machinery.</p>

  <p>At the time my family also owned a small Dry Goods store in downtown Mystic, CT, right at Cotrell &amp; Main Street, at the base of the historical bascule bridge. I'd spend days at the store, but every hour the bridge would go up, and I was allowed to go outside and watch. The alarm bell would go off and the gates would come down, so I would run out the back door and onto the river walk. The bridge tender would blast the whistle, and then silently the 218ft long, 85ft wide bridge would rise straight up into the air, the massive concrete counter weights almost touching the sidewalks below on the other side of the river. Boats were then free to pass, and then the bridge would slowly come back down. It was a ritual for me back then, and if I am ever back in Mystic and its 20 minutes to the hour, I'll watch the bridge go up.</p>

  <p>Expand more about this</p>


  <figure class="post-image">
    <img src="/images/posts/bascule-bridge.jpg" alt="The Bascule Bridge in downtown Mystic CT" />
    <figcaption>Still one of my favorite things to see (I even have a tattoo of it on my forearm...not kidding)</figcaption>
  </figure>

  <p>this quote doesn't work here</p>
  <blockquote>Our brains don't in the predicted ways that a typically developed brain would, and this difference leads to experiences of social isolation, maladaptation to our environment, alienation, and constantly pretending to be someone we're not.  - Sol Smith</blockquote>

  <h3>The signs were there</h3>

  <p>When I was 6 or so, my mom started her battle with breast cancer. She lost the fight when I was 9 and my sister was 13. As soon as that happened, <i>everyone</i> treated me differently, like I was broken. Immediately I withdrew more than I even did before. I've always hated attention, preferring to blend into the background. I almost never ask for help, even when I desperately need it. I spent my summers in Connecticut at my grandparents, essentially left to my own devices. During the school year I was back home outside Chicago, where I would spend most of my time alone. I had one friend, but that was more due to the fact he lived a few houses down. I didn't really get how other kids worked, always feeling like I was missing something. I barely got through school, only doing the bare minimum - not because I didn't get it, but because I didn't care. Certain things would trigger my interests, but most classes were just something to get through.</p>

  <p>As I got older, I found my two best friends in high school, and they kept me afloat. To this day they are still a concrete part of my life. But apart from them I was never interested in going out to parties, bars, or socializing. I got pulled into computers at a young age and just kept learning as much as I could about them. The two programming classes I took in high school were the only classes I ever got A's in. That love of computers thankfully turned into a career and I started supporting myself, finally becoming a front end designer and developer.</p>

  <p>A few years ago I finally decided to get therapy because no matter what I did I always felt like I was on the outside looking in, joking that I was an alien sociologist studying human behavior. Therapy sort of worked, I learned healthy boundaries, and started to work on better identifying my emotional states and needs, but certain things weren't working. I would bring up my &quot;quirks&quot; as I lovingly called them, but my therapist just dismissed them. Things like my obsession with vintage Apple computers, the fact that I eat the same thing for lunch every day, or how whenever I go anywhere I take the same route and try to park in the same spot every time (much to my wife's chagrin). She would just dismiss these as nothing to be concerned about.</p>

  <p>Out of curiosity I started reading up on autism in adults - not some Buzzfeed quiz or TikTok video, but really researching medical journals and even reading the DSM V. The more I read, the more boxes I checked. (Side note, I HATE phrases like &quot;red flags&quot; or &quot;symptoms&quot; which imply that I am defective or something to be fixed.) Awkward in social situations? Check. Difficulty making eye contact? Yup. Intense interests? I can name models, trim levels, and options for most of the 1997-2006 Jeep Wranglers, and own close to a dozen Apple computers, so yeah that tracks. Difficulty in changing routines? You bet. When I asked my therapist point blank if she thought I was autistic, she straight up said no. I expected at the very least a &quot;Why do you think that?&quot; or some discussion, but it was just dismissed. I was confused. I parked in the same spot every single Friday for two years, with the same Hot Chocolate from Starbucks <i>every time</i>, fidgeting with the label during our session <i>every time</i>, wearing almost the same thing <i>every time</i>. I had asked her if it was odd that when I go to a certain restaurant I get the same food every time. I asked about why I feel like my skin is crawling when I am around strangers every time. The one time Starbucks was closed and I didn't have time to run to another one before our session I was noticeably agitated because I didn't have something to hold. The signs were there - I just fell through the cracks because I masked really well, and pathologically avoided help and attention.</p>

  <blockquote>Instead of trying to change how an autistic person reacts to us, we need to pay close attention to how <i>we</i> react to the person. - Barry M. Prizant</blockquote>
  <h3>Testing &amp; Diagnosis</h3>

  <p>My therapist had some medical issues and retired rather unexpectedly late in 2024. After a few months of a break, I reached out to a psychologist in the area who focused on autism testing and diagnosis. We had a Zoom call where I talked a lot about my experiences and why I thought I might be on the spectrum. He kindly explained the process, what we would do, and how we would proceed. He didn't dismiss me, or talk down to me, he was genuinely interested. A week later I went into his office and spent a good four hours doing all kinds of aptitude tests and questionnaires. I thought it was going to be more like a therapy session where I would talk about my experiences, but it was definitely more on the clinical side. We did one more quick session the following week of more tests, and he said we'd circle back on another Zoom call to go over the results.</p>

  <p>Finally on May 27th, 2025 we had our final video call where he confirmed I did have autism Spectrum Disorder, along with Social Anxiety (that I knew).</p>

  <blockquote>Autistic traits are human traits, nothing else. They diverge from what's considered normal in both predictable and completely surprising ways. Labels like &quot;good&quot; or &quot;bad&quot; do not apply here. - Sol Smith</blockquote>

  <h3>Discovery</h3>

  <p>After hearing the diagnosis and letting it sink in I've started having little 'Ah Ha' moments where I look back at certain points in my life through this new lens and suddenly things make more sense. I've been reading as much as I can about it but I it's hard because a lot of literature is either very clinical and about how autism presents in children, or looking closely at those on the spectrum who need much more support than I do. The two books so far that have helped the most have been <i>Uniquely Human</i> by Barry Prizant and <i>The Autistic's Guide to Self Discovery</i> by Sol Smith. (links below).</p>

  <blockquote>... a diagnosis revealed to them brings a sense of comfort, begins the process of erasing negative feelings about oneself. It offers a much needed explanation for challenges they experience - Barry M. Prizant</blockquote>

  <p>Not only am I coming to terms about how I work as an adult on the autism spectrum, but I am also becoming much more aware of how the public perceives and talks about ASD as well. I am still figuring out person-first language vs identity first language - am I a &quot;person with autism&quot; or an &quot;autistic person&quot;? I don't know where I will land on that, there's still so much to understand.</p>

  <h3>Resources</h3>
  <p>I love learning and reading as much as I can, so here are some of the resources that have resonated with me:</p>
  <ul>
    <li><a href="https://youtu.be/8-8VH3ohZX4?si=jpePHu4BCIMZ-yLp" target="blank">YouTube: Neurodiversity Q&amp;A</a></li>
    <li><a href="https://www.amazon.com/Autistics-Guide-Self-Discovery-Flourishing-Neurodivergent/dp/1608689980/ref=asc_df_1608689980?mcid=c30dab5c712c3354b017f5cc73a48b8d&hvocijid=12521994303461405729-1608689980-&hvexpln=73&tag=hyprod-20&linkCode=df0&hvadid=721245378154&hvpos=&hvnetw=g&hvrand=12521994303461405729&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9021699&hvtargid=pla-2281435179978&psc=1" target="blank">Autistics Guide to Self Discovery</a></li>
    <li><a href="https://www.amazon.com/dp/1982193891?ref=ppx_yo2ov_dt_b_fed_asin_title" target="blank">Uniquely Human</a></li>
  </ul>

</article>