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It took 35 years for Kathy to be diagnosed with autism

By Jo Abi|

Kathy Divine had lived her entire life wondering why she found some things more challenging than others, like walking into crowded restaurants. It was the lights that bugged her the most.

In fact, Kathy felt sensitive to most light and would regularly turn off of hers each night at a certain time and exist in darkness.

"My nervous system falls apart," she tells 9Honey. "I couldn't go into restaurants with bright lights and I can't have lights on at night after a certain time. I find it weird everyone is cool with it [lights]."

Kathy Divine was diagnosed with Autism Spectrum Disorder (ASD) at the age of 35.
Kathy Divine was diagnosed with Autism Spectrum Disorder (ASD) at the age of 35. (Supplied)

She'd accepted it was just one of her quirks. We all have them.

However, she then fell ill and her life became even more difficult to navigate, prompting her to search for some answers.

Then, at the age of 35, Kathy was diagnosed with Autism Spectrum Disorder (ASD) and was finally able to make sense of everything.

"I'm 45 now and I was diagnosed at 35, which is quite common in girls and women," she says. "We go under the radar. It's only when life changes or something big happens that we notice."

RELATED: 'I am raising three boys with autism': Gold Coast mum's struggle to cope

For Kathy, that "something big" was a chronic illness, namely Ehlers-Danlos syndrome (EDS), a connective tissue disorder than can be inherited and causes joint hypermobility skin hyperextensibility and tissue fragility.

She admits it took her a long time to accept her diagnosis and process it.

"I'd denied it for ages," she says. "It's the stigma of the word, so many stigmas and stereotypes. But it's just me, there are just differences."

According to Autism Spectrum Australia, one-in-70 Australians are on the autism spectrum, with inclusivity in the autism community still low.

She now works to raise awareness of the cognitive difference through her organisation Ask The Aspie.
She now works to raise awareness of the cognitive difference through her organisation Ask The Aspie. (Supplied)

Following her autism diagnosis, Kathy found herself looking back at her life and finally understanding so much of what had been happening to her.

"I had to think back and make sense of things and it was good to be able to figure things out," she says. "Everything made much more sense and now I can make better decisions just as a result of knowing."

For example, she knows she can't work under lighting, so working from home suits her. Having the right environment is "everything" to her, even if she is just relaxing.

"We go under the radar. It's only when life changes or something big happens that we notice."

Kathy is sharing her story for April's Autism Awareness Month. She also runs the organisation Ask The Aspie, raising awareness of autism and issues such as creating the right environment for those diagnosed with the cognitive difference.

"The right environment is everything so if children with autism are upset or have meltdowns its because their environment is not right," she explains. "They are not bad kids. They just don't have the right environment."

To find out what the right environment is for someone with autism, Kathy says to simply ask, unless that person is non-verbal, in which case carers can learn by observing.

"Ask what they need instead of assuming a lot of things," she says. "Finding the right environment helps people with autism thrive at home, in school and in employment.

Carolina (left) is a Mable carer who helps support Kathy as needed.
Carolina (left) is an independent support worker on Mable who supports Kathy as needed. (Supplied)

What she wants for every Australian with autism is to be able to "enjoy life" and be "valued".

Since her diagnosis Kathy has been able to access support through Mable, a platform that links those in need of support with the carer of their choice.

Autism is one of the most common disabilities on the Mable platform. That is why Mable partnered with Autism Explained to deliver the training Autism 101 to independent support workers using the Mable platform via the learning hub.

"What I find is working from home for me works and working for a small amount of time, and I've been using Mable workers to help support what I am doing," she says. "I think adults with autism are an untapped talent pool. They have skill sets people aren't aware of and if we can highlight this unique skill set we can add value to a lot of work places and governments and corporations.

"Hire autistic people and experience the difference."

It frustrates Kathy that she has so many autistic friends who aren't working and have so much potential.

"They are full of potential and have so many skills and so much to offer," she says.

Share your story at 9Honey@nine.com.au.

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