How an Autism Diagnosis Made Me Feel Validated and Seen

A while back, I got assessed for autism. As a clinician, I have always had my suspicions, but wanted to get the opinion of someone else more qualified to assess. I haven't told many people; I mostly only self-disclose in certain contexts, or when I get the "how come you" or "why can't you" questions that can only really be answered by sharing this information. When I do share it, most people don't bat an eye; I think most who know me aren't surprised.

But every once in a while, I'll get the "you don't look/seem/act autistic." I usually laugh those off because it doesn't matter to me- a diagnosis was really only to validate me and help me realize that many of the things I had been struggling with (extreme sensory difficulties and struggles with understanding and navigating so many social situations) weren't just "in my head.”

A Lifetime of Unanswered Questions

When I was about 3 or 4 years old, my mother has a journal entry that describes me as being "held hostage by a television commercial" due to my extreme discomfort with the sound of the music playing. I had such extreme reactions to things that so many others simply found mildly irritating or were even able to ignore. As long as I can remember, certain sounds or textures have bothered me to where I feel physical discomfort. As an adolescent, teachers and friends' parents would call me "sensitive" and say I complained a lot. I learned quickly that other people didn't have these "issues" that I dealt with every day.

For me personally, my diagnosis was one of the most validating things to ever happen to me.

Source: K.Gillis

In elementary school, a teacher suggested to my mother that I get testing done. I was always in gifted and talented classes, finishing books and assignments weeks ahead of my peers. But I couldn't follow basic directions or understand certain social cues. This was the early ‘90s, and words like "autism" and "ADHD" were stigmatized and eagerly avoided by most middle-class families. But I sometimes wonder if this validation could have helped me understand myself—and also help others understand me.

Because I was highly articulate and excelled in school, most adults likely did not think that my behaviors were anything other than behavioral difficulties. As a girl, my symptoms of overstimulation, high levels of irritability, and discomfort with social situations were often labeled as difficult. I remember having to leave the room when classmates had a runny nose because the sound of sniffling would send me into a complete meltdown. Unfortunately, my parents, often tied up in their own stress and dysfunction, thought that I was just being "difficult" and I would get punished.

The Validation of a Diagnosis

The road to validation was long for me. I spent over 30 years making excuses for things that, in the back of my head I knew were not typical of my allistic friends and colleagues.

"I just have social anxiety,” I said as an excuse when others noticed I had no problem speaking in public but had extreme stress in mingling situations.

You are just easily distracted, I told myself every time I was unable to speak, unable to make eye contact , or even unable to cross the street because of extreme sensory overload.

Everyone has certain textures, sounds, and fabrics that drive them bonkers and cause physical pain, I reassured myself again and again... right?

"I'm just a cat lady," I would joke, when asked why I have such a strong connection to animals but struggle to make friends with humans.

And these quirky behaviors, waving my hands in front of my face, repeating many sounds and words loudly throughout the day, and other things that I tried my best to keep to myself, aren't stims, I thought, just my "quirks."

But as I continued into adulthood, I realized that there were more than a few of these "things" that were getting harder to mask. Masking had left me feeling that I was just a difficult and angry person, and it was getting harder to explain why I was constantly irritable and overwhelmed.

Eventually, I mustered up the courage for an assessment- an assessment that ended up being one of the most validating events in my life.

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Source: Messan Edoh/Pixabay

Why does a diagnosis matter?

Many autistic people feel like an official diagnosis does not matter as much as lived experience, especially since the road to diagnosis is often long, stressful, and expensive. Still, many feel validated when they understand the "whys" behind many of the behaviors and feelings that had otherwise been unexplained. This is likely why there are more diagnoses of Autism and other neurodivergences: because of an expanded recognition of how these conditons and diagnoses present across different lived experiences.

We now have an expanded understanding of how neurodivergence manifests, especially in women and in marginalized groups. Women often have their symptoms seen as manipulative or aggressive. And due to how women are socialized, we also tend to have less of the monotone, direct way of speaking than those socialized as males may have.

My diagnosis was one of the best, most affirming things that has ever happened to me. It's not to be feared or cured.