Diagnosed with autism at 48, charity founder encourages celebration of neurodiversity

The New South Wales-based founder of a charity for autistic children and their families is celebrating her own autism diagnosis at age 48.

Key points:

  • Rachel Rowe started Autism Camp Australia after her daughter was diagnosed as being on the autism spectrum
  • Ms Rowe was recently diagnosed with autism at age 48
  • Autism Awareness Australia says adult diagnoses are on the rise

Rachel Rowe started Autism Camp Australia to support and provide respite for the families of young autistic people after her daughter was diagnosed with Autism Spectrum Disorder at the age seven.

Ms Rowe's work, which has included meeting hundreds of families living with autism, made her question her own neurodiversity.

"I think there are a number of ways that autism presents," Ms Rowe said.

"One is in repetitive behaviours — so that idea of continually looking for new information to flesh out ideas that I had, the eternal quest for knowledge, always looking for more.

"The other side is the social side of autism — not understanding why, when I communicated, people reacted differently to how I expected they would react.

"I always felt a bit like the black sheep of the family, second-guessing what I was meant to do, or having to work through things quite hard to find out the answers, or to behave appropriately, or say the right things."

Ms Rowe self-diagnosed and recently sought professional diagnoses from several experts who agreed she was on the autism spectrum.

"I knew that I was — there was no doubt in my mind," she said.

"But when you have someone say, 'This is the reason you feel so different' — for the first time ever there was a real validation in who I am.

"There's now an incredible celebration in knowing who I am, having a really clear idea about how I navigate the world, connecting with my people and being able to support my daughter in a way that perhaps I wouldn't have been able to before."

Adult autism diagnoses increasing

Autism Awareness Australia CEO Nicole Rogerson said adult diagnoses appeared to be on the rise.

"Recently there has been an increased understanding of what autism looks like in adults," Ms Rogerson said.

"This has led to increased awareness and is helping people to understand the signs and challenges they may have, which leads to an autism diagnosis later in life.

"So, whilst not common, it is certainly on the increase."

Ms Rogerson said autistic adults were often misdiagnosed with anxiety and other mental health issues.

"This can lead to a feeling of not knowing where you fit in and some frustration in getting to the bottom of it all," she said.

Woman in t-shirt with Spectrum Women branding speaking at a lectern.

Barb Cook was diagnosed with autism in adulthood.(Supplied: Barb Cook)

Barb Cook, a neurodiversity consultant and editor of Spectrum Women: Walking to the Beat of Autism, was diagnosed with autism at 40 after several misdiagnoses.

She said adult women were often undiagnosed because of their ability to "mask" their differences.

"They also mimic their peers, in order to not appear as the odd person out, or to draw attention to themselves," Ms Cook said.

"While these masking strategies may appear to help them to get by through their younger years … by the time they reach their 30s and 40s, the cracks start to appear due to burnout or a major breakdown."

How recognition can help

Ms Rowe said she hoped her story would inspire others to seek out early diagnoses.

"You start to look at things that have happened in your childhood and there have been moments where I've felt very sad for the little girl and young adult who didn't have that clear understanding of who she was," she said.

"Not understanding your neurology has cumulative mental health downfalls … the average life expectancy for an autistic person across three major recent studies is 36, 39 and 54 … there are major mental health issues for autistic people who are undiagnosed or not diagnosed early.

"The earlier they can seek diagnosis the better."

Woman in striped top and glasses sitting at table smiling at camera.

Rachel Rowe says her Autism diagnosis has helped her connect with a community of people who have similar life experiences.(ABC North Coast: Samantha Turnbull)

Ms Rowe said she also hoped sharing her diagnosis would help others to better understand autism.

"When you first tell people you're autistic, they'll often say, 'Oh, we're all a little bit autistic,' and they expect you to take it as a compliment that you're not any different," she said.

"But it's really denying the difference in the way our brains work.

"It's important people acknowledge the neurology is different, and until we start working with that in mind, rather than trying to change or cure autistic people, we're not moving forward in a progressive way."

from https://www.abc.net.au/news/2020-08-07/charity-founder-diagnosed-with-au...