These are just some snapshots of my life growing up in a society with a poor understanding of neurodivergence (particularly during the 90s), with no access to the support I truly needed.

I didn’t see myself as “disabled” for a long time

I was diagnosed with selective mutism at the age of four. It was a label that defined me and explained my differences for most of my life (I only got an autism diagnosis when I was 20). However, the word “selective” made people think I was “faking” not being able to speak and therefore wasn’t truly disabled.

The most uncharitable interpretation people had of me was that I was an attention seeker and master manipulator, tricking people with my fake disability to receive special treatment.

This left me feeling deeply isolated. I believed that I was an awful person who didn’t deserve to find a sense of identity and belonging within the disability or other marginalised communities, because my struggles were “fake” and other people had it worse than me (TBH, I still feel this way sometimes).

(Note: I personally don’t use the term “situational mutism” for myself because I have an atypical and severe presentation of selective mutism, and the word “situational” doesn’t reflect my experience at all. I speak in a soft whisper to everyone, including my parents, sister, and closest friends. The only people I was completely mute around were my grandparents. There is no situation where I speak in a “normal” voice.)

I had no access to AAC

Growing up, AAC (Augmentative and Alternative Communication) was never offered as an option to me. People expected me to learn to speak and did not want me to rely on other forms of communication.

As a kid, I was used to having my needs go unmet if I wasn’t able to communicate them verbally. I thought this was something I just had to live with. I internalised the belief that “if I cannot speak up, I don’t deserve to get my needs met.”

One time in primary school during a class, I needed to pee, but had no way to inform my teacher. I held it in for as long as I could until I eventually wet myself. It was a deeply humiliating experience. My teacher made me feel as if it was all my fault this happened. After that, I told myself I could only drink very little water while I was in school, so that I wouldn’t feel an urgent need to pee.

I have to explain myself to every new person I meet

I identify a lot with Elphaba from Wicked. My whisper voice is my “green skin”—the visible difference everyone fixates on. I so relate to her having to constantly explain her green skin to people she just met: “No, I am not seasick. No, I did not eat grass as a child. And yes, I have always been green.” For me, it’s “No, I don’t have a sore throat. No, it’s not an illness and there’s no cure. I’ve been speaking this way since I was four.”

This was (and still is!) a huge source of anxiety for me. I dreaded meeting new people because I knew I had to deal with their judgment and endless questions once they heard the way I speak.

Therapists often mistook my anxiety for typical social anxiety and thought what I needed was exposure therapy and CBT (Cognitive Behavioural Therapy). They completely misunderstood the reason behind my anxiety and made me feel as if I was simply being “irrational.”

I get unsolicited advice all the time

When I do attempt to explain myself, people often respond not with understanding, but with advice I never asked for.

“You should see a doctor to check your throat.”

“You just need to come out of your shell and be yourself!”

I know they mean well, but it is deeply exhausting to deal with and only adds to my anxiety around meeting people.