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Why it’s time to retire low and high-functionig autism levels

When my older sister was 13, she got a job at a fish-and-chip shop. Watching her cash tills and serve customers, I was in awe at her self-composure and sparkling confidence. Though just two years older, she seemed a decade ahead of me in every way, and I often wondered what was wrong with me.  I knew that even in five years, I wouldn’t be able to hold a regular job like her or my teenage classmates. 

Ten years later, I still felt like the anxious, sensitive child I’d always been. Though I’d been Dux of my high school and had moved from my regional hometown to the city to attend university, by age 21 I still couldn’t make friends or attend events without having a panic attack.

If I was so smart, why couldn’t I function like everyone around me? Two years into my undergraduate degree, I decided it was time to prove myself: I was going to get a casual job, just like everyone else. Applying to be a waitress at a local cafe, I didn’t tell anyone in case it went badly. 

It went badly. Not even an hour into the unpaid trial shift, I was sent home. I wasn’t handling it, the owner told me. I looked anxious and wasn’t smiling enough, she said. Though I’d tried hard to hide my distress, the constant barage of noise, odours and movement in the cafe was disorienting. I was too flustered to remember the table numbers, let alone the orders being spoken to me through the warped onslaught of other voices, scraping chairs, and clanging kitchenware.

The owner was right – I couldn’t handle it, and it was devastating.

I cried with shame when I got home, and resolved myself once again to study hard with the aim of securing an office job one day. But even as I entered the professional workforce in my mid-20s, I was horrified to keep finding myself in situations that, logically and in hindsight, were “beneath” me.

There were the students and colleagues who bullied me. There were the friendships I could never maintain, and the romantic relationships I could never initiate. Worst of all, there were the people I let take advantage of me, like the street-seller who stopped me to comment on my severe eczema, and in the space of 20 minutes convinced me to buy a dozen cosmetic skincare products worth $700.

Of course, the products didn’t work. Alone at home, deeply ashamed and coming to the realisation I’d drained my student bank account, I hid the products in the top cupboard of my sharehouse bedroom. I’m smart, I told myself. So why do these things keep happening? 

I was 28 when I was finally diagnosed as autistic. Suddenly, my life made sense: the anxiety, the suicidal depression, the imploded relationships, the loneliness, the sensory overwhelm.

Confronting yet comforting, everything I’d always struggled with was right there, written in black and white.

But my relief at my autism diagnosis was short-lived.

Initially, I hoped that with a diagnosis would come support and eventually some relief from my life-long social and psychological suffering. Almost two years on, my quest for relief has been self-directed, lonely, and mostly unsuccessful.  

Looking back, I can’t help but wonder if things would be different had my autism not been categorised. Level 1, says my report. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), doctors classify autism as either Level 1, 2 or 3, categories that also dictate how much support an autistic person needs.

In reality though these “levels”, along with the labels “low functioning” and “high functioning”, serve to help neurotypical people more than autistic people, namely by defining who they think needs support. 

These categories also play into the common myth that the autism spectrum is linear – ranging from “not very autistic” (“high functioning”, Level 1) to “very autistic” (“low functioning”, Level 3).

The reality is autistic traits fall into an outward-sprawling graph, like a spider-web or colour wheel. So while I have above-average intelligence, poor social skills, high sensory sensitivity, and significant mental health issues, another autistic person may present in complete opposition to me.

To be clear, I’m not saying that Level 2 or 3 autistics do not need significant assistance. Instead, I’m arguing that “high functioning” autistics, particularly adults, are often left to fend for ourselves.

Whether we’re denied assistance or even a diagnosis, we’re just not autistic enough to warrant support from the services apparently designed to help us. 

Sadly, I know I’m not alone. Online, I’ve found a diverse community of fellow autistics, many of whom, like me, were diagnosed later in life and categorised as “Level 1”. For many of us, above-average intelligence, professional achievements, or even hyper-empathy have meant we’re labelled “high functioning”.

Tellingly, us “high functioning” autistics are also often high-masking and high-suffering – lonely, burnt out, and both mentally and physically ill. Yet because we have a career or partner, we are perceived to be “functional”.

Take this line from my own diagnostic report, for example:

“Elena reported no academic or intellectual challenges, in fact her intelligence has been used to offset other areas of difficulty.”

Though my report also states I require support “managing the demands of life and relationships”, the overall theme seemed to come down to the assessors’ opinion that I have “used logic to overcome many of the deficits associated with autism”.

While this may be true in some areas of my life, I can’t help but feel this intellect-trumps-all sentiment erases the psychological, social and physical suffering of “high functioning” autistics, making it harder for us to secure support services. 

So how do we as a society support all autistic people?

It’s time to move on from the damaging “low” and “high functioning” labels, and to ditch the myth of the linear autistic spectrum.

Importantly, doctors and therapists need to rethink autistic people’s percieved functional capacities.

Rather than assigning support based only on the DSM-5’s categories, priority should be given to an individual’s self-reported needs and social history.

Instead assessor need to actually ASK autistic people about our experiences without making assumptions and advocating with us, not for us.

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