Being diagnosed as autistic as an adult made these people want to make a change. Now they’re flipping the switch on the negative perceptions of autism. 

ABC Riverina

“I am a broken person, trying to put the pieces back together in the (perhaps vain) hope that maybe the repaired version will be more beautiful than the scars that pain left behind …”

I first wrote these words online in mid-2019.

I had just experienced a psychotic episode — not my first — and had suffered several years of “hell” as I struggled through an array of challenging and, at times, devastating mental health struggles.

By this point in my life, I’d almost completely lost any sense of who I was.

I hid behind various social masks, which I subconsciously wore each day, as I tried to fit into a social world that so often felt foreign and difficult to comprehend.

My camera became an impenetrable barrier to stop anyone from getting too close to a version of myself that I considered too much for anyone else to love.

What I did not know as I wrote those words was that just a few months later, at the age of 27, I would walk out of a clinical psychologist’s office as one of the estimated one in 70 Australians diagnosed with autism spectrum disorder.

Being diagnosed autistic as an adult would change my life in an immeasurably positive way — but first, it would nearly destroy me.

Tailor-made healthcare

Jonathan Ho is a mental health GP who lives and works in Wagga Wagga in the NSW Riverina.

Dr Ho has been my GP since early 2019 so our clinical relationship is well established, but when we sit down to chat in late-2022 the nervous energy in the room is palpable.

This particular day we are sitting down to talk about being autistic adults, an identity that, like myself, Jonathan came to recognise later in life, at the age of 41.

Back in medical school, he had tried to seek help for what he thought was a learning difficulty.

“That minimisation, that because … I have a job or I’m able to pass my examinations, I’m able to converse with people and have warm and friendly chats, that there was possibly nothing wrong with me and it’s just in my head.”

Now 43, he openly speaks about his diagnosis.

“It dawned on me that I’d had [autism] all my life, but it was never recognised,” he says.

Jonathan’s approach to clinical practice is as unique as his numerous colourful suits, each of which he bespoke tailors and sews by hand.

As we sit I listen with curiosity, contemplating various metaphors he has carefully woven throughout his practice.

The conversation soon turns to the topic of his fountain pens, which he uses daily to write his scripts in green ink.

I tentatively ask the meaning behind the pens, already knowing the answer.

“Each fountain pen is unique,” he says.

“When I use that fountain pen it is really an embodiment of how precious individuals are.”

My heart sinks.

In September 2019, nine months after we met, and within weeks of confirming I was autistic, I determined that I was irrevocably broken, and I attempted to take my own life.

I hesitantly push through the distinct tension hanging in the air and ask Dr Ho how it felt to interact with me back then.

He shows some hesitation before answering,

“My understanding was that you didn’t get the help that you needed. There wasn’t a system or approach to really listen to your needs and respond to them,” he says.

To say hearing this was unsettling is an understatement.

Moreover, I sit discomforted by the knowledge that my story is not unique.

Autistic individuals have a suicide rate nine times higher than the general population.

If you or anyone you know needs help:

• Lifeline on 13 11 14
• Kids Helpline on 1800 551 800
• Beyond Blue on 1300 224 636
• Suicide Call Back Service on 1300 659 467
• headspace on 1800 650 890
• MensLine Australia on 1300 789 978
• Care Leavers Australasia Network (CLAN) on 1800 008 774
• ReachOut
• Head to Health

‘Every system in my life collapsed’

Jennifer Hankin, 29, was diagnosed autistic five years ago.

When I arrive at her home in Newcastle, she is in an NDIS phone meeting. Her concentration has an intensity to it, and she appears stressed and somewhat frustrated.

She asks many “why” questions about the way the system works, as she struggles to get the support she feels she needs to live life on her own terms.

After the meeting, her persona dramatically changes. She hurries to greet me with an enthusiastic hug.

We began corresponding via social media back in May last year, but this is the first time we have met in person.

When we sit down on her bright red couch to chat, Jennifer nestles under her rainbow-coloured weighted blanket, which matches her colourful, hand-sewn overalls.

It soon emerges that Jennifer has also struggled with her mental health for many years.

In 2017, she turned to the internet for help following more than a decade of unrelenting depression symptoms and it didn’t take long for her to realise she was probably autistic.

But when Jennifer approached her psychologist, she was initially taken aback by the idea.

Jac Den Houting, an autistic post-doctoral research fellow at Macquarie University, tells me this experience is particularly common among women and girls, as well as other socially marginalised groups.

“The vast majority of what we know about autism, and even how we define autism, is based on research that was conducted with boys: white, middle-class boys in Western countries,” they say.

“We have started to recognise that autism is a lot more heterogenous than that.

Dr Den Houting explains this acknowledgement of the broad ways autism can present has only started to emerge in the past decade or so.

As a result, many psychologists’ clinical training is not up to date with recent research.

Jennifer tells me her hard-to-recognise autism is actually a presentation that is “highly masked”.

Masking within the autistic community is the experience of camouflaging behaviour or acting a particular way, sometimes subconsciously, to hide in plain sight, in a society where autists often don’t feel socially accepted.

It’s a reality I am far too familiar with.

“Wearing a mask for me means I am presenting as socially and societally acceptable, no matter what my internal experience may be,” Jennifer says.

Jennifer tells me she lives a “double work life” where teaching flute provides financial stability, and sits alongside her work as a professional flautist.

She describes being a flute player as “the only career that I’ve ever wanted”.

Despite the common idea that autistic people only excel in science and technology, creativity can be an innate part of the autistic experience.

But regardless of the field, sustaining a meaningful career as an autistic person isn’t without its challenges and compromises.

About 31.6 per cent of autistic adults in Australia are unemployed and many more are underemployed.

For Jennifer, sustaining her career has been challenging due to long-term autistic burnout — which feels intense, unrelenting, and permanent.

“From what I understand, in regular society, burnout doesn’t necessarily mean a collapse of every system in your life. It might just be one or two,” she says.

Jennifer may live in a dual world as a creative professional and an autistic adult, but I have a sense that she’s starting to lean into this existence.

One thing she clearly values is the empathetic and nurturing relationships she forged with other autistic adults along the way.

What she’s just described is better known as the double empathy problem, first suggested by an autistic researcher, Dr Damian Milton, in 2012.

The theory asserts that autists don’t lack empathy, but rather we have different ways of expressing ourselves and communicating, which often leads to a social disconnect that is erroneously perceived by non-autistic people as a lack of empathy.

Jennifer elaborates.

“Being around other neurodivergent individuals doesn’t cost me anything,” she says.

‘It’s really a heavy thing’

“I only ever thought of it as a negative thing, to be autistic,” says 55-year-old Kathy Halbsch.

Kathy and I met in an online support group for autistic women, which I was co-facilitating. That was almost a year ago, but this is our first meeting face-to-face.

Her one-bedroom social housing unit in Wagga Wagga is sparsely furnished, so much so that her TV is balanced upon a pair of cardboard boxes.

As I take in my surrounds, I realise that throughout the room are meaningfully placed ornamental pieces and artwork, which lend small bursts of vibrancy and personality to the space.

The most compelling object in the room is a life-sized mask made of concrete that, once spotted, is hard to ignore.

“The mask I made, it’s made of concrete and that’s to show just the weight of it, it’s really a heavy thing,” she explains.

Through the safety and support of engaging with other autistic adults her perspective on what autism is has profoundly changed.

I glance towards the bench near the windowsill, where the mask is placed.

The midday sun filters through the eyes revealing an inner layer of gold that hides behind the flat facade. I ask her about the meaning.

“Gold’s precious, who you are is precious,” Kathy passionately declares.

I’m struck with a sense of irony that among autists who are so often typecast as literal and uncreative thinkers, I continue to encounter such profound metaphors that challenge the pervasive stereotypes that we don’t feel or understand nuanced emotions.

But more importantly, I’m glad that Kathy appears to have reached a place of self-acceptance after several years of personal struggles where she didn’t get the support she needed.

Despite the validation of her autistic identity by clinical professionals and peers, Kathy still craves further supports, which she can only access with a formal diagnosis.

It’s something that remains unobtainable for her, as assessment for autism in adults can cost upwards of $2,500 in regional Australia.

Dr Den Houting tells me within the autistic community, self-diagnosis is valid and generally accepted.

They acknowledge that other autistic people are more likely to recognise factors such as the exorbitant cost, stigmatisation, and the medical model that underlies a diagnosis of autism in which autistic people are characterised by deficits.

Cumulatively these lead to formalised diagnosis being inaccessible for many adults.

Nevertheless, it’s clear that for Kathy a weight has been lifted.

Reconciling her autistic identity has come with a new-found sense of empowerment.

‘Us not-broken humans’

Megan Spindler-Smith is the chair of ABC Inclusive, the disability employee network at the ABC. We met when I joined the committee in 2022.

Megan was diagnosed autistic two years ago, at the age of 41.

When I arrive at their home in Richmond, in north-west Sydney, I immediately notice the letterbox covered with LGBTQIA+ and Aboriginal flags, nestled among the tree-lined streets.

The letterbox is just one example of how Megan’s life involves embracing the world from an intersectional perspective.

“I’m non-binary and I am queer … I have a wife; my wife is Aboriginal. My younger sister is Korean, so I have grown up in multiple cultures,” they say.

There is a saying in the autistic community that if you know one autistic person, you know one autistic person.

“My experience as an autistic person will never be the same as your experience,” Megan says.

They are right, we are very different people, with very different life stories.

Despite our differences, Megan and I effortlessly hit our stride in conversation.

We certainly don’t sound like the stereotyped “expressionless” social expectation of autism — we can both be described as talkative and opinionated.

However, it’s important to acknowledge that ways of communicating vary, even for autistic individuals, and there is no singular correct way.

Megan and I have a few other traits in common, one of which is a strong sense of social justice with a particular fervour for changing the disability space.

“I do absolutely see autistic people as marginalised,” they say.

Perhaps the most compelling commonality between us is that we both embrace the notion that autism is actually not a form of disorder.

We reject the medical model of autism, which defines people by so-called deficits.

Instead, we see autistic as simply a description of a particular type of brain, or neurotype.

The more we talk about our shared experiences the more passionate Megan becomes.

For Jonathan, Jennifer, Kathy, Megan, and myself, a common sentiment emerges from our largely divergent life stories. As Megan says:

Each of us has expressed a similar mindset as we come to terms with our autistic identity as adults.

Slowly realising our worthiness and value as individuals and as part of the autistic community is an important understanding we all share.

Not hoping in vain

On August 30, 2019, I was diagnosed autistic.

At first it felt like a tragedy, and it very nearly was when I tried to end my life.

But being recognised as autistic later in life meant finding an identity and acknowledging that autism is so much more than a medically defined “diagnosis”.

Being autistic also means belonging and being part of a vibrant and intersectional community with shared cultural experiences.

Realising I was autistic was not a missing puzzle piece, but rather a rich new lens through which to understand my life more fully, both now and in retrospect.

My autistic identity informs and reframes how I think, feel about, interact with, and understand my world.

It has led to paradigm shifts I never imagined, relationships with new depth and meaning, and opportunities I will cherish forever.

Will the hard parts of being an autistic adult disappear in my lifetime? Maybe not.

But I am reassured that hoping the scars and painful parts will continue to fade, and something more beautiful will emerge, was not hoping in vain after all.

Credits:

• Reporting and photography: Jessica Horner
• Additional photography: Graham Horner
• Animation: Sharon Gordon
• Digital production: Nicole Mills

 

from https://www.abc.net.au/news/2023-02-06/autistic-adult-autism-diagnosis-identity-stereotypes-myths/101678172