Guest writer: Until the wheels fall off – My autism diagnosis at 24 and finding acceptance with Little Science Co by Elisa Ly

by | Apr 18, 2022 | Guest Writers | 0 comments

Hello lovely people! Heidi here for a quick intro before I had over to Elisa for a new blog post. It’s been a while, blog-wise, because honestly the weeky/fortnightly schedule I set for myself was too intense, sometimes too expensive (I’m a tiny business and I pay the writers that you see on the blog), and a lot for me to add to everything else I do business-wise and elsewhere. I needed to take a break and distance myself from it for a bit so that I can come back with a less neurotic approach. I’ll be updating the blog every now and again, I’m not setting myself a schedule and it’ll be a case of me adding business updates when I fancy, and then including guest writers when someone pitches something of interest or when I’ve asked someone to write about a specific topic – a much more chilled approach to the Little Science Co blog you may have known previously. I hope that’s ok!

Anyway, this week I asked Elisa to write a blog post for us. If you don’t know, Elisa’s our one and only Little Science Co Intern. She gives me a bit of structure, helps with things that I don’t have time for, and provides me with an all round sense of calm. I didn’t give her a set topic for this post, and I haven’t edited any of her words. This post made me cry, then I emailed Elisa to tell her how wonderful I think she is, and that made her cry. So.. just be prepared for that..

Happy Autism Acceptance Month x

Trigger warning: mentions of suicide

Elisa has her dark hair in two long plaits. She's looking at the camera with her head slightly tilted upwards. She's wearing a fair isle knit jumper in tones of dark blue, pink and grey, and her hoop earrings are a matching pale pink colour. She's wearing glasses that has an upper rim in tortoiseshell brown.

Like many autistic people, I grew up feeling different and out-of-sorts from the rest of my peers. I had tried my best to fit in with the crowd, learning how to behave ‘correctly’ by observing what others were doing around me.  During my school years, I was painfully shy, would never participate in class, and would only have two or three close friends I would constantly hang around with. My conversations and how I acted were never instinctual. In secondary school, I had to quickly figure out within the first week that girls hugged each other, and the only acceptable answer to “how are you?” is “I’m fine, thanks, how are you?!”.

The possibility that I could be autistic was never considered.

School gave me the rules, structure, and routine I needed to thrive: I was an over-achiever who consistently achieved straight A grades, I took part in all optional extra curriculars (yes, I was that student), and I socialised adequately enough with others that teachers would constantly write in my school reports every year, without fail: “Elisa is a quiet and conscientious student, who likes to keep to herself.”

As I got older, when being young, quiet, or shy was no longer an excuse to avoid life’s tasks, I started generating scripts for social interactions and phone calls, often observing conversations around me, and adding them to my script directory for future interactions. Learning. Adapting. Masking.

I found safety and comfort in my familiar environments and surroundings, so that by the time I was at university whilst living at home, it was all going relatively smoothly. I had put my stress at social situations down to social anxiety, so I was getting cognitive behavioural therapy (CBT) through the NHS IAPT service. But I found that CBT never seemed to have a lasting effect or teach me anything I didn’t know already. The definition and symptoms of social anxiety also never quite seemed to fit. It wasn’t that I feared talking to people, I just never knew what to say.

It took moving across the country and starting a new job after university, for the carefully crafted threads to slowly start unravelling. I was one of the lucky few to get onto the NHS Scientist Training Programme, a highly competitive post-graduate healthcare science training programme. I was no longer safe among my family and the friends I had grown up with. It was a completely new environment, with completely new people, and a completely new way of living. At work, my department was not prepared to train me, so the training was unsupportive, disorganised, and unstructured. All the coping strategies I had unknowingly put in place over the previous 21 years of my life, were now obsolete. I had to start from scratch.

I didn’t know how to start from scratch.

I was lost, and then the suicidal thoughts found me.

Most autistic people diagnosed as adults often struggle profusely with their mental health, before their autistic identity is recognised. It is not uncommon for many undiagnosed autists to experience repeat mental health crises or severe autistic burnout, or to be misdiagnosed, commonly with borderline personality disorder.

In fact, it is widely acknowledged among the autistic community that ‘diagnosis’ only happens when life overwhelms your coping mechanisms, when society begins to disable you, because your autistic needs are no longer being met.

Throughout 2020 and 2021, and towards the end of my training, a variety of factors resulted in several consecutive mental health crises. Conflicts and misunderstandings at work were a massive factor (see: the double empathy problem). I took several bouts of sick leave due to severe depression, suicidal thoughts, and suicidal intent.

During this time, no one at work checked up on me. When I felt ‘well enough’ to go back to work, I explained to my seniors I was struggling and that I desperately needed their help to finish my training. Their response? Where have you been for the past year? It’s too late to ask for help now. You won’t be able to finish everything on time. This is your fault, I can’t help you, it’s your problem. An end-of-training appraisal with anonymous feedback showed that my colleagues thought I was a ‘poor communicator’, ‘confusing’, ‘disdainful’, and that I was ‘hard work’.

The month of April is Autism Acceptance Month. This month is also referred to as Autism Awareness Month, but really, what is the point of making people aware of autism? What we really, desperately need, is acceptance of autism and other types of neurodiversity.

My official journey to discovering I was autistic began in early 2021. This was after two friends separately suggested that I may be autistic, after listening to my difficulties within the workplace and with my colleagues. True to autistic nature, I went down a deep internet rabbit hole, finding out that contrary to my own belief at the time, autism isn’t always the cis-white-male autism that is depicted so pervasively on film and TV, and noting all the non-classical autistic traits that aligned perfectly with mine. Autistic people can be kind, empathetic, funny, and creative. I discovered that I wasn’t broken, that I wasn’t a ‘poor communicator’, or any of the words my colleagues had used to describe me.

I was autistic. I am autistic.

Like so many others, my autistic journey so far has been filled with pain and grief. There have been several times I didn’t want to be alive. Several times where I thought I wouldn’t, couldn’t, make it through. I grieve for my past undiagnosed self, but also for my present and future self: I am living in a world not built for me.

I moved back home after my training ended, re-surrounding myself with my family and my friends who describe me as funny, generous, and talented. I adopted a cat (quick shoutout to Ava!). I needed time to grieve, to recover, to heal. To find and accept my newly discovered autistic self. But I also craved acceptance from others, and a place I could build my self-belief and self-worth. My numerous attempts to get a job were met with rejection after rejection. Approaching Heidi to ask for mentorship and a possible internship at Little Science Co, was one of the best decisions I have made.

To me, Little Science Co is a place where I feel like I can have a seat at the table. Where my talents, strengths, and skills are recognised. Where my voice is heard, my existence is validated, where there is a community who lift each other up.

I am so glad that I am here, and I am glad to be here.

Ava feat. major sleepy toe beans.