Uncovering the “hidden stories” of late-diagnosed adults with autism
These days, Dani Croaker lives in Melbourne with her two children and three dogs.
But growing up, she loved the space and freedom of living in the countryside. She mostly remembers it as a happy childhood – being out in nature and the big open paddocks with her sister and two brothers.
Yet when it came to things like school and friendships outside of her family, Dani always felt something was wrong.
“I was too much. I fooled myself, like I didn’t know how to temper my excitement or my enthusiasm for things.
Reading social situations was a challenge for Ms Croaker – like who to play with at lunchtime.
“There are kids running around and they all seem to be interacting and playing with each other, and I wouldn’t have a clue how to fit in there and then how to continue with what they’re doing.”
Living in country Victoria in the 70s and 80s, the concept of ‘autism’ or ‘being autistic’ was not on the radar.
Ms Croaker says that for her and others who grew up around the same time, the 1988 film Rain Man, in which Dustin Hoffman plays an autistic person with savant syndrome, was the first popular portrayal of autism that they saw.
“Rain Man…is what I thought was autism,” she says.
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A changing understanding of autism
Over the past three decades, our cultural understanding of autism and what it means to be autistic has expanded far beyond these early stereotypes.
But much autism research has focused on children and young people and how to ‘fix’ autism, rather than how to support people with autism, said assistant Gabrielle Hall. research at Macquarie University.
She is co-author of a recently published project titled Hidden Histories, documenting the lives of late-diagnosed autistic adults.
“So, first of all, [the project] was pretty much a story of the undiagnosed lives, and then what worked for those people and what didn’t, what were the catalysts for a good life and what got in the way of a good life.”
Ms Hall is a late-diagnosed autistic adult herself and says having autistic researchers on the team has added to the authenticity of the project and made it easier to connect with those interviewed about their life stories.
Professor Liz Pellicano from Macquarie University’s School of Education co-led the project and says a number of common themes became apparent when the team interviewed adults with autism and analyzed the results.
A major theme was experiences of trauma.
“One woman described how she was so affected by the bullying that she [had] was an absolute wreck.
“Others talked about self-perception always feeling different. Others said they were ashamed of who they were.
“One of our participants said it very well: ‘For 40 years I felt bad and different, but I couldn’t put it into words.'”
Another theme that several people spoke about was a feeling of regret or missed opportunity for being diagnosed later in life.
“They could have accessed services and supports, and they could have potentially connected with others with shared autism experiences much earlier than they do now.”
But while there were negative experiences in the lives of many of those interviewed, Ms Hall says their resilience also shone through.
“I saw such resilience and strength and so many gifts and skills that it made me really proud to be part of this community.”
Ms Croaker was one of the autistic people interviewed for the Hidden Histories project.
She says that as she grew up, the pressure of trying to behave as people expected and follow social norms brought her to a dark place in her adult life.
But then came a revelation.
The child of one of Ms Croaker’s close friends was diagnosed with autism, which led her to discover how autism presents differently in women and girls. Suddenly things made sense.
She says the eventual diagnosis she received was “the best thing that ever happened to me”.
“I was 46 at the time, so I tried for a very long time to fix myself, without success, but losing myself completely along the way.
“So that was just the start of this process of letting go of all this ‘homework’ that I had around who I was supposed to be and rediscovering who I was, which I didn’t know since I was born. was a child, I don’t think.”
Ms Hall says it’s critical to understand the lives of adults with autism, especially when their health outcomes may be worse.
People with autism experience higher levels of chronic and acute illnesses compared to the general population.
“It’s really important to consider that, as we understand people with autism throughout their lives, preventative measures to scan or look at how we can detect physical illness earlier [can] avoid more discomfort later,” she says.
“These things take a long time, but it’s really about knowing that it’s a priority and funding that to make changes as soon as possible.
“Because people with autism age, and people with autism age differently and require different services and supports.”