Tag: being seen

Undiagnosed autism means you might act, speak or be in a way that others don’t  like.  I see so many stories on social media about this.

This is another area where I struggle to identify with the experience of other autistic people. In my diagnostic assessment, I scored in the 96.4th percentile for masking and in the 94.2nd percentile for assimilation.

What do those numbers actually mean? It means I masked at a very high level, frequently and with more intensity than 96.4% of other diagnosed autistic people. It means that I adopted behaviours, language and cultural norms to fit in, at a higher level and intensity than 94.2% of other diagnosed autistic people.

But those high scores belie the untold toll of exhaustion and turmoil, the contributing factors for C-PTSD that I would likely be diagnosed with, should I be interested in such a diagnosis.

(I’ll post about late diagnosis,C-PTSD, masking and assimilation on another day.)

“Why can’t you be more spontaneous?” That’s the way my autism runs.

Masking and unmasking

My difficulty in being spontaneous is related to my autistic need for routine and structure.  Changes in plans or routines can be disabling; masking and assimilation means covering that up so my distress is not seen.

Since my autism diagnosis, I’ve been working on unmasking,  unwinding all those things that cause internal stress simply by virtue of being aware of my differences.

The challenge is engaging with society, unmasked.

“Why can’t you be more spontaneous?” That’s the way my autism runs.

A Francophile and Brisbane’s annual French Festival

I’ve been aware that I need to start getting out and about again. Since my diagnosis, I’ve been a bit reclusive, not going out much,  just going out for my Shebah work and groceries, and the occasional movie.

I heard promotions for the 2024 French Festival, and decided I would go. I bought a three-day pass, thinking that it would Gove me some flexibility around Shebah bookings.

I went along, catching the bus down to South Bank. Getting to the festival was easy. My autism made the rest of it tricky.

My planning was simply to go to the French Festival. I didn’t plan for what to do at the festival. And that was my unmasked downfall.Wandering aimlessly might sound wonderful to some people. For autistic me, it was distinctly uncomfortable.

“Why can’t you be more spontaneous?” That’s the way my autism runs.

Regathering and planning another outing

After thinking deeply, on the bus after leaving the festival,  on the drive from the bus station to home, and at home,  I realised that the discomfort I was in was from the aimless wandering.

Hence, I then planned outings that I could set up a program for; no aimless wandering.

… drumroll … The Ekka.

The Ekka, or more correctly, the Royal Queensland Show, is a celebration of agriculture and a joyful meeting of country and city in the Brisbane CBD. It started in 1876, and has run every year since except for:

• 1919 – because of the influenza epidemic;
• 1942 – during World War Two,  the showgrounds were used by the military, including what we now know as The Old Museum;
• 2020 and 2021 – during the Covid-19 pandemic.

Yes, the Ekka is an institution.

My Ekka memories

I went to the Ekka many times as a child. My parents bred and showed dogs, so we were at the dog show that is part of the Ekka. We had backyard chooks, so I would go to the poultry pavilion.

I remember sitting in the stands at the main arena, watching the cattle and horses being paraded, the horses being put through their paces in dressage and show jumping.

I remember the Ekka “must dos”; the showbags which, back then, were sample bags; the dogwood dogs, the fairy floss and the now famous strawberry sundaes.

The Ekka 2024

I bought a ticket for Tuesday,  because at the dog show, Tuesday was the day for Terriers (Group 2). I grew up with Australian Terriers and Scottish Terriers that were showed. Of our dogs, in the 1970s, we had three champions (Australian Terriers) and one triple champion (Scottish Terrier). So, yes, there is a connection to Group 2.

But then,  I heard a callout for volunteers for The Common Good, the charity that put on the strawberry sundae stands, raising funds for The Common Good, the Prince Charles Hospital Foundation. I decided to register as a volunteer.

Ekka Strawberry Sundaes

My autistic heart was singing. Registration was easy, on-boarding was slick and well done. I signed on for four shifts as a Cashier.

The Ekka runs for nine days, from Saturday to Sunday on the following week. My four shifts were from 5pm to 9.30pm, Sunday, Wednesday, Thursday and Sunday.

First shift, at the Gregory Terrace stand. They had four cashiers for two registers,  so I volunteered to stay out the back,  cutting and slicing strawberries. For the first shift, I was very nervous, and anxious. So when they  needed strawberries cut,  I jumped in.  Having a knife in my hand, a cutting board in front of me and food to be prepared; that’s my happy place.

Second shift, at the Plaza stand. They only had one register, and was on that register for my full shift. Busy, busy,  busy.  And I had a golden moment.

Third shift, back at the Gregory Terrace Stand, on the registers. A negative experience.

Fourth shift, at the Gregory Terrace stand, in the registers. Good as gold.

“Why can’t you be more spontaneous?” That’s the way my autism runs.

The golden moment

At the Plaza stand, we had two cashiers for one register, so one of us ran the register and the other handed across the card that was to be presented at the next window to receive your sundae/s.

I was on cards when I noticed a young man come up, wearing a sunflower lanyard. I noticed his speech pattern, eye contact, and the way he moved,  and knew he was autistic. As I handed him his card, I told him that he was “doing great,  autistic brother,  from an autistic sister”.

His smile, and the slight change in his posture, made my day.

So imagine my delight when he came back, later in the evening. He looked at my name badge, and in a measured way, called me by my name, and said I was also doing great,  “autistic sister, from an autistic brother”.

I nearly cried.

If you have any hidden disability, you know how moving it is to be seen. My words obviously affected that young man, the same way his reciprocation moved me.

When I think about that young autistic man, going to the Ekka on People’s Day, usually the busiest day of the Ekka, my heart swells. (Autistic hyperempathy.) Deploying his coping strategies, not masking, wearing the sunflower lanyard, moving about the Ekka.

So yes, I’m counting those combined experiences as a golden, precious moment.

The negative moment

At the start of each shift,  I disclosed my autism. On the third shift, another cashier was a retired teacher. My experience with her was less than stellar. She questioned my diagnosis and didn’t believe it was possible to be diagnosed so late in life. I had to explain Level 1, 2 and 3 support needs for autistic people.

Later in the evening, this person socially excluded me from the social chat among the cashiers at the end of the shift. 

I had a little RSD (Rejection Sensitivity Dysphoria flare, but then reminded myself – it was her loss, not mine.

In conclusion

So, no,  I didn’t get to see the dog show. I did have a fantastic experience volunteering for The Common Good. And I had that golden moment.

I’ve bought myself a sunflower wristband and pin, so maybe there might be more autistic recognition, and potential for more golden moments.

Going to big event, with a definite plan of what to do, made a big difference in my autistic experience at The Ekka, in contrast to the aimlessness French Festival.

My next test of my coping strategies at an event will be a trip to the Eat Street Markets at Hamilton. A plan – to explore it as it is now, and have something to eat.

Here’s to the next steps in my journey as a late diagnosed autistic women.