‘Between my fingers, I held a completely new perspective on life. It felt like I’d been sucker-punched in the gut.’: Young woman shares journey through late autism diagnosis

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Autism Diagnosis

“‘It is in my professional opinion, that you do satisfy the diagnostic criteria for Autistic spectrum disorder.’

I must have read that sentence about three times over before I looked up from the piece of paper, and back over to the psychologist sitting before me. Further down the page, I could see where she’d listed my symptoms and behaviors, how she’d analyzed my life from the stories I’d told her.

I held between my fingers a completely new perspective of my life so far.

I couldn’t help but feel like I’d just been sucker-punched in the gut as I drew breath. I’d been researching this for a long time. I’d cross-referenced my strange quirks and repetitive nature with the diagnostic criteria daily. I’d interpreted and re-interpreted this outcome repeatedly. I knew in my bones that I was inherently not the same as everyone else… logically, I think I already knew what the verdict would be. But still, here I was now, dumbfounded. I re-evaluated my entire life once more, with more clarity than I’d ever had before. Every broken friendship, every petty argument, all of my mistakes and regrets – was this the reason for it all? Do I attribute my intellect and passion to this diagnosis? Where do I start and where does my autism end? The noise in my head whirred on as my mom eagerly continued to make further conversation with the psychologist. I regret to say I don’t really remember much of the rest of that appointment.

That was almost four years ago… and I have to say that it’s been a long road to become the person who writes this right now.

autistic woman taking a selfie
Courtesy of Melissa Vernon

Growing Up Autistic

Growing up autistic, especially when you don’t know you’re autistic, goes a couple of ways in my experience. You either struggle at a young age to the point where they take you to a professional, or you assimilate into the neurotypical world until one day – you just crack.

It took me a long time, but eventually, I cracked it wide open.

I had already achieved so much by the time I was accepted into university. I had three A-levels and a BTEC, straight A*-C at GCSE. I was proficient at playing the piano and singing in a choir. I wrote poetry, and I won awards for volunteer work throughout the school. I, to anybody who knew of me, was a polite and gifted young socialite that breezed my way through life.

At home, surrounded by family, I don’t remember ever having to pretend to be somebody I wasn’t. There was a level of expectation that I try not to be rude, as I often wouldn’t think to greet people when they entered a room. Generally, though, I was a very happy and unique child. My mom always did her best to ensure I was comfortable, even when my demands seemed illogical to her. For example, I had a sensory-driven compulsion to always wear two pairs of socks and I was unable to wear jeans from the ages of ten to sixteen.

sisters looking like twins
Courtesy of Melissa Vernon

She very well could have forced these habits out of me, but instead, she just allowed me to exist as I was. I spent a lot of time playing with my younger sister, who remains my best friend to this day. She also never really paid mind to the need for accuracy in our pretend games or the way my routines would weave their way into our playtime with dolls or stuffed animals. The home was truly a safe space away from the torment at school and I never felt out of place or impaired.

That being said, I was heavily picked on at school and ridiculed for being a nerd almost daily. I ran in social circles that people typically did not see as popular. I was someone who never really succumbed to peer pressure and didn’t follow the crowd. I loved all things sci-fi, anime, and video games; I would openly talk about them in class. But despite the openness about my hobbies, I still had to do a lot of pretending in order to fabricate a set of social skills. In my case (and in many others), I am proficient at studying others and copying their social customs and behaviors in order to blend in. This meant no ‘happy hand flapping’ at school and also that I was expected to understand unspoken social rules such as idioms and sarcasm. This is what we know as ‘masking’ and it typically happens in autistic girls/women because we’re often not recognized as autistic until much later in life, if at all…

Courtesy of Melissa Vernon

College Years

When it came to choosing a degree, I never really understood what had led me toward Speech and Language Therapy. Most of my colleagues have a story about having had speech therapy as a child, or had been hopelessly inspired by a speech therapist in the past. But I had no diagnosis, nor any specific attachment to the profession. It just touched me. When I rationalize this now, I think it was an instinct. I think, when on some level communication doesn’t come naturally to you, you want to fix that for others because you know exactly how that feels.

I feel a special kind of connection with people who can’t properly communicate. Often, I too, feel trapped in my own head, unable to say what I’m really thinking or feeling. Be it because you can’t find the words, or you’re too afraid of the consequences of saying the wrong thing. Either way, your lips tend to stay shut. Living with a social communication deficit, especially when you have perfect insight into it, feels like you have a missing piece of yourself. It feels like everyone else got an instruction manual detailing how to build a clock, and around you, everyone else’s clock ticks perfectly in time. Only you never got that instruction manual, and now your clock, although perfectly functional, ticks a second out of sync. I think this is the true reason why I become a Speech therapist; to support other people and to help them understand that although they might not communicate or see the world the same way as everyone else, they’re still ticking.

woman showing her thesis - how a late diagnosis impacted the lives of autistic women
Courtesy of Melissa Vernon

In the lead-up to my diagnosis, I was going down in flames. I barely kept up with assignments, I could hardly eat or sleep. I was once again tangled up in another toxic relationship. I was doing fine academically, but I could not understand why everybody else seemed to manage everything so perfectly; study, social life, meal prep, cleaning up, food shopping, budgeting, trips home, romantic relationships. They made it look easy and I was barely staying afloat. I felt like a social outcast sitting in my little apartment and living with a constant dread that if I let my guard down for a second, if I stopped manually controlling my face, body language, tone of voice, level of eye contact…then I’d offend everyone in the room. It was around this time that I tried even harder to be liked outside of my four walls.

I lathered on bold makeup and made a show of myself by creating this big, confident character. I often said outrageous things for shock value and talked myself up to be this bold character at my job back at home. And then every night I’d head back to my flat, take off the makeup and the persona, and spend a quiet evening regretting everything I’d said and done in the day. College is hard for anyone, but it’s much harder when you’re constantly using all of your energy pretending to be someone you’re not. It’s a lonely feeling.

autistic woman in a red dress, wearing a lot of makeup, in a back yard
Courtesy of Melissa Vernon

I can really empathize with people who have lost their speech or language in that way. The loneliness and isolation. It takes a long time to grieve that loss, and each person will do it in their own different way. At work, I see people who are going through that process every day as they struggle with a new reality. And I’ve felt that process too, in my bones, while I’ve cried in the mirror wondering who I am. At a time, I was no different from the patients I see every day. Because from the moment I was handed that piece of paper from the psychologist, I felt like I’d found an answer to all of my questions. But I also lost a huge piece of myself, all at once. I remember once saying to my mom, ‘How do I figure out who I really am, if I’m always acting like the someone I’m expected to be?’

As I sat with the diagnosis, I threw myself into a cycle of self-depreciation and no matter what I did, I could not suffocate the idea that I was fundamentally broken. My sensory profile soared once again; I limited my food intake because the texture of food in my mouth often felt wrong. Because of this, I got down to about 98 pounds. I cried relentlessly and seemingly over nothing. I let friends and boyfriends abuse me because the mere mention of the word ‘autism‘ would have me immediately apologizing, regardless of the issue. I was a shell of the confident, clever schoolgirl I used to be, and still, I had no idea if she was ever really me or another mask I’d created. I usually remember things in vast amounts of detail, and I feel that I can often taste memories. Around this time, it’s more just a few greyscale stills and an unrelenting bitter taste.

Graduation

The idea that I could ever graduate and become a Speech therapist seemed laughable at this time…

There was something therapeutic about eventually finishing my degree in 2021. I was learning to support others’ communication while also slowly learning to support my own. I finally realized that the mask I so desperately kept in place throughout school and university? I could put in place and remove it as I pleased. In time. I’ve even learned to just wear it in part.

Armed with new confidence, I turned up at my final year placement at the Royal Derby Hospital feeling hesitant. I so desperately wanted to succeed at something after a long journey to self-acceptance during the lockdown. From this placement, I quickly realized that I was interested in working in an acute hospital setting and became interested in not only acquiring communication difficulties, but also dysphagia. Walking around the hospital was the very first time I felt like a professional and it was nothing short of empowering. I was offered a job at that same hospital in September of 2021, along with two other job offers.

woman with her partner
Courtesy of Melissa Vernon

I now work full-time at the Royal Derby as an acute/neuro speech and language therapist. I work with stroke patients at the outpatient clinic for people with Parkinson’s, and see Acute patients with swallowing difficulties. Every day, I learn something new, such as today when I learned that cervical osteophytes can affect the swallowing mechanism! Or last week when I saw unilateral velar/palatal elevation in a stroke patient clearly for the first time. My time doing clinical work is always very rewarding and I can visibly see and feel my progress as I get further into my role, not only clinically, but in the way I feel about myself.

After working for three months, then came January 21st, 2022. My 22nd birthday. I was in the middle of Leicester, sitting there in a busy auditorium, chomping on my nails. I was so nervous knowing that I was about to walk down the stage at my graduation. I’d been told since my school days, that I walked like a dinosaur, and I knew that I was far from graceful. There was a loitering feeling of dread sitting in the crowd; the music was loud and there were many layers of perfume lingering in the air. Frankly, I was just petrified of tripping over and was so overstimulated I could barely breathe. Heading up to the stage and hearing the crowd clapping wildly for other graduates as they walked only added to the anxiety I felt.

I could have easily run away in the opposite direction at that moment. But then, the time came. They announced the course ‘for the degree of bachelors of science in Speech and Language Therapy.’ Shortly after, they called ‘Melissa Elizabeth Vernon’ and I walked down that stage like a complete natural, hand in the air, waving to the crowd and beaming. That was a key moment when I knew I’d made it through this war with myself, and was utterly at peace with everything that I am. I’ve also watched back the video a few times now and every time I think to myself, ‘I didn’t even look even remotely dinosaur-esque.’

woman walking across the stage
Courtesy of Melissa Vernon

Today

I love everything about my life now, and I have it all. I have a kind and patient family and I live in a beautiful apartment with my wonderful partner. On top of that, I have a great job as a Speech therapist, a second-class degree, a life-changing diagnosis, and a co-published piece of literature in the SEND field (all at only 22 years old). It’s a shame I’ve had to get here to realize it, but there are so many wonderful things about being different in this world that you’d probably never think of. The love I have for my partner and my family, for example, is the most genuine example of love that I know. They see me so clearly, for everything that I am, and I truly believe there is not a thing they would change about me. That is the best thing you’ll find about being different. When people love you, you know they love you for you. And I wouldn’t have gotten to where I am without that love.

There will always be times when I’m out in the world and I feel completely alone, but I’ve learned that a lot of the time that’s not really a reflection on me. I can often put in more effort in a single working day than anyone could ever fathom, but it’s just no good if people refuse to meet you halfway or won’t try to accept you. The world just doesn’t quite understand different people yet. And I look forward to the day when people feel they don’t need to change so much just to feel included.

woman at her place of work
Courtesy of Melissa Vernon

I think to end my story, I just want to say this:

Often when I say Speech and Language Therapist and Autistic in the same sentence, I think people see that as a juxtaposition or question my diagnosis. At a time, I would have thought it impossible too – ‘the communication expert who can’t always communicate.’ In the past, I’ve felt like I had to pick one or the other because I can’t be both a functioning professional and take care of my autistic needs.

But here I am. Every day, I am in the hospital. I am sitting by somebody’s bedside teaching them to say their children’s names again. I am standing there, patiently, showing them how to safely swallow water. I am in the line-up clapping as they leave the stroke ward after months of rehabilitation. I am content just being there, holding their communication chart while they tell their family that they love them.

I am doing it all with the confidence that these people are in capable, autistic hands.”

Courtesy of Melissa Vernon

This story was submitted to Love What Matters by Melissa Vernon of Derbyshire, UK. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about autism here:

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‘If your son was less disabled, we could be of service to him.’: Mom shares ‘horrendous email’ received when seeking support for son with autism

‘Best birthday I’ve ever had.’: Strangers celebrate 11-year-old with autism after no one shows up to his party

‘All I want is to keep his memory alive.’: Mom puts spin on elf on a shelf to teach world about autism after son passes from cancer

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