‘Unacceptable reason my lifespan is 20 years less’

Elena Filipczyk could have died numerous times during her childhood. Today, she still faces a shorter lifespan. The reason is unacceptable.

Unacceptable reason my autism means my lifespan is 20 years less.

Trigger warning: Contains themes of suicide

I was in primary school when I told my mother for the first time that I wanted to die.

At age 12, tortured by tiny noises in my head, I had my first nervous breakdown.

At 16, when my father died from a long, traumatic fight with cancer, I fell into a deep depression I couldn’t escape from.

At 23, while studying overseas, I battled an unknown illness that left me dizzy, half-deaf and in constant pain. As fellow exchange students went clubbing and enjoyed German Christmas markets, I stopped eating and wandered the empty, icy streets of Berlin alone contemplating suicide.

By the time my mother died suddenly and unexpectedly of a heart attack and when I was 27, I’d already resigned myself to a life of suffering. Despite medication and therapy, depression and anxiety had been my constant companions.

Unbearably sensitive to the world, unable to sleep, constantly sick, and achingly lonely, I also couldn’t shake the feeling there was something else going on. Something was secretly, fundamentally “wrong” with me.

Elena Filipczyk struggled through her childhood. Picture: Supplied

She felt like there was something “wrong” with her but didn’t know what. Picture: Supplied

Why did I feel alone in a crowd? Why couldn’t I verbalise my innermost feelings? Why was eye contact painful, and human touch sometimes electric?

Why did I feel comforted and connected lying alone listening to the same albums on repeat but feel nothing talking to the people I knew in real life?

At 28, I was finally diagnosed with autism.

Though finding out I am autistic has made my entire life made sense, my relief at the diagnosis has been short-lived. As well as looking back and reassessing every pivotal moment in my life, I’ve begun to look forward, and the future is terrifying.

As well as experiencing higher rates of homelessness and being eight times more likely to be unemployed, autistic people have a life expectancy 20 to 36 years shorter than the general population.

Though the exact reason for this horrifying lifespan discrepancy is unknown, it’s most likely got something to do with the comorbidities autistic people often live with.

As well as facing physical and neurological comorbidities like congenital abnormalities, epilepsy, insomnia, and gastrointestinal disease, autistic people are also prone to psychological conditions like depression, anxiety, obsessive-compulsive disorder, eating disorders, and bipolar disorder.

We’re also more far more likely to commit suicide.

Elena Filipczyk in hospital following surgery on her ear. Picture: Supplied

In one Australian study of autistic people without intellectual disability, 66 per cent of respondents reported suicidal ideation, with 35 per cent reporting suicide plans or attempts – about five times higher than the general population.

But why can life be so unbearable for autistic people?

The sad reality is that we’re just not made for the neurotypical world. In a world built by and for neurotypical people, is it any wonder that autistic people struggle to work, house ourselves, or fight constantly against our physical and mental illnesses?

In Australia, up to 75 per cent of autistic people do not complete education beyond year 12, with a federal parliamentary inquiry finding that a “significant proportion of autistic people are reliant on their families and/or government funded services and benefits, such as income support payments”.

What governments fail to mention, however, is that these income support payments are rarely above the poverty line, with many autistics ineligible for the NDIS (National Disability Insurance Scheme) let alone the DSP (Disability Support Pension) anyway.

Currently, the maximum “basic rate” DSP a single adult can receive is just $501 per week. With Australia’s poverty line at $489 per week and the median rent in Sydney now at $670 per week, it’s hardly surprising that even autistic people with access to the DSP or NDIS are struggling.

Elena Filipczyk’s autism diagnosis was a relief but it was short-lived. Picture: Supplied

So how can we make life better for autistic people, and help change the terrifying statistics we live with?

In my opinion, it begins with our governments and communities listening to us – to what we really need to not only survive, but thrive.

In October, Australia’s first National Autism Strategy (NAS) opened for public feedback, and I’m hoping our voices will finally be heard.

According to the government, the National Autism Strategy has been designed to “improve life outcomes” for autistic people in Australia, with key reform areas including access to services, healthcare, education and employment.

Done wrong, nothing will change for autistic people.

Done right, the NAS is an opportunity to increase both the autistic lifespan and our quality of life.

To do so, the NAS must prioritise our financial security – by fostering truly accessible workplaces, but also by ensuring that unemployed autistics get income support that is actually above the poverty line.

Only with financial security can everything else in life fall into place: diagnosis and support, social inclusion, physical health, and, ultimately, mental health.

I know, because I’ve lived it.

Having grown up in poverty and government housing, with no idea I was autistic, I’m lucky I’ve made it out. Though it’s taken a huge toll on my mental and physical health, I’ve managed to graduate university, hold ‘good; jobs, make friends, and find secure housing (well, as secure as rentals can be). Today, even with a diagnosis and (expensive, self-funded) support, I still struggle. Mostly, however, I am doing OK.

But I’m in the minority.

And like my parents who died young and the quirky, sensitive friends I’ve lost to suicide, autistic people deserve better.