My Autism Diagnosis Story

Photo by Imani Clovis on Unsplash

I have always known that something was different about me. It’s also very possible that the people close to me know it, too. I’ve always been shy, anxious, and quirky. I’m a picky eater, I crave alone time, and I sometimes get way too upset about things that other people don’t care about. It was only after years of searching for what made me different, that I was diagnosed with autism at the age of twenty-five.

Though I’ve always been a highly-sensitive, anxious person, my anxiety spiked when I was eight years old, and it manifested itself in ways such as severely obsessive behaviors, major separation anxiety, and various sleep issues.

My anxiety got to the point where I was not able to function in my day-to-day life anymore — from the incessant hand-washing and compulsive checking to the constant fear that my mom was going to die — all of which led to depression. Anyone who knew me back then probably thought I was pretty weird, though I tried to hide it the best I could.

It probably didn’t work.

When I was around twelve, my mom took me to see a licensed counselor. I remember that I absolutely despised him. I knew something wasn’t right with me, but I didn’t want him to tell me that. Even though his methods for trying to help me never quite worked, he did open my mom’s eyes to a whole new world of mood disorders and research. It soon became pretty clear that I had obsessive-compulsive disorder and some sort of anxiety disorder.

Close to three years later, I went to see a psychiatrist, and she prescribed some anti-anxiety medication. They helped to subdue my anxiety, though they obviously didn’t solve any of my problems. I subsequently began to see a psychologist for therapy sessions to help me with the transition to high school. She was helpful, but I was still having trouble with anxiety, as well as obsessive thought patterns and depression.

On top of all of that, I began to struggle in school. Even though I paid attention in class, took notes, and studied, my test grades suffered. Everyone told me it was just test anxiety, but that never felt quite right to me. I began to feel inferior to my classmates and friends who were doing better than I was in the same classes.

As my high school graduation drew closer, I became anxious about the comfortable routine ending and having to move on to college.The impending adjustment seemed terrifying and insurmountable, though, to my bewilderment, all my classmates were excited to graduate and move on.

I only applied to one university because it was small and close to home, and it luckily ended up being a good fit. However, college was not a particularly great experience for me, but I didn’t know why. I became frustrated because I felt so different from everyone else my age: I didn’t like social events, I didn’t want to live on campus, and I found it difficult to make friends.

At some point during my college years, I watched the TV show Parenthood, and I began to identify with a character who had Asperger syndrome. I shared my thoughts with my mom, but we both decided that I really couldn’t be autistic because I didn’t exhibit the “typical” symptoms. First of all, I wasn’t a boy. I wasn’t good at math, I felt empathy, and I could read social cues.

Please forgive our ignorance.

Fast forward a few years. I was twenty-four, I’d graduated from college, I had my first “big girl” job, and I was married to the man of my dreams (hi, Honey!). But something just wasn’t right. When I looked back on my life up to that point, and I felt frustrated with myself for how hard and completely exhausting it had all been for me compared to others. Sure, I had a pretty great life (and husband), but none of it was easy or particularly enjoyable. I chalked it up to a lengthy adjustment period and subsequent anxiety and depression. No big deal.

But towards the end of 2017, after nearly a year of marriage, my impatience with myself grew because I was still feeling unsettled, anxious, and just generally unhappy. I decided to start therapy again for the first time in years. While I adored the therapist that I began to see, he didn’t quite get what I was going through– just like every other therapist I’d seen in the past. Sigh. All the advice he offered for my vague complaints of anxiety and unhappiness just didn’t work.

But it got me thinking.

One day in January 2018, I came across an article online about something called “stimming.” I’d heard of stimming before, but I thought that it was merely the hand-flapping or rocking that some people with autism did. It turns out that it’s so much more than that.

The word “stimming” is derived from the term “self-stimulatory,” and it’s a behavior that people with autism do to self-soothe when they’re over-stimulated. I learned that actions like hair-chewing or twirling can also be considered stimming. This immediately resonated with me because if you know me, you’ve probably noticed my weird habit of chewing on the ends of my hair (don’t judge me). I sent the article to my mom and asked if she thought that it could explain this habit, and she said: “I think you should find out more about autism.”

And so, I did.

For an entire weekend, I researched everything that I could find about autism (obsessively, of course), including several enlightening YouTube channels. I found many more questions than answers, but I learned enough to realize that I could, quite possibly, be on the spectrum.

I had an appointment with my therapist scheduled that following week, and so I wrote down all the reasons why I thought I might have autism, including stimming, meltdowns, special interests, and sensory issues. To my relief, he was very positive about it and suggested that I take the ADOS-2 (Autism Diagnosis Observation Schedule) test. I decided to go through with it, and we set a date for the test.

And so, on February 26, 2018, I was officially diagnosed with Autism Spectrum Disorder (formerly known as Asperger syndrome).

According to National Autistic Society, “Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.”

Knowing that I have a medical diagnosis that confirms that my brain works differently than everyone else’s is scary, but it is also a monumental relief. Do I wish I had gotten a diagnosis earlier? Sometimes. But I wonder if I’d always known that I’m autistic, would I have grown up hating the term and thinking of it as a disability? Instead, I think of it as something special about me that explains why I am the way I am. Since my diagnosis, I have been able to be so much more patient with myself. I have found peace and comfort in my diagnosis.

Yes, I’m different. And yes, that’s okay.

7 thoughts on “My Autism Diagnosis Story

  1. I enjoyed reading your story very much. My older daughter self-diagnosed Aspergers about seven years ago when she was thirty-one. I was keenly aware since she was less than a year old that she was”different.” I took her to countless doctors and therapist. They never suggested that she was on the Autism Spectrum, perhaps because she was female. Although she had most of the classic symptoms. She had a great deal of difficulty making and keeping friends, temper issues and being obsessive. Her adolescence was a nightmare for her and the rest of the family. She moved to her own apartment when she was in her senior year of art school. I forgot to mention how intelligent, and artistically gifted she is. She is married now but still has difficulty with social interacting. She prefers spending her time alone in her studio. Very thoughtful and sensitively written article.

    Liked by 3 people

    • Thank you for your comment! I can definitely empathize with your daughter; I was also likely not diagnosed because I’m a female and didn’t exhibit the “typical” signs of autism. It is so sad to know how many women out there get late diagnoses because of this, but I hope as autism research continues, more doctors and psychologists are able to identify that females show signs differently. I hope your daughter is doing well now that she has an explanation. I know it helped me a lot.

      Liked by 2 people

  2. Thanks, Rachel for the write-up. You give a lot of hope to all the parents out there who are always in fear about their autistic child’s future. Looking forward to more posts from you. Please share about your school experience; your studies, friends etc.

    Liked by 4 people

    • I am so glad to hear that! That’s my overall goal for this blog, so it’s nice to hear that I am giving some hope to others. And thanks for the post suggestions; I will definitely write on those topics in the near future!

      Liked by 2 people

  3. Rachel, your blog will soon be added to our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description on the list (or to decline).
    Thank you.
    Judy (An Autism Observer)

    Liked by 2 people

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