UNTIL 40-year-old Sydneysider Marissa Ely was diagnosed with high-functioning Autism [known as Level 1] by the Black Dog Institute almost two years ago, she said “I lived my whole life feeling different but I couldn’t put a finger on it”.
April is Autism Awareness Month, and Ely will be sharing what it’s like to have autism specifically from an adult’s perspective at the Autism and Me forum in Randwick on April 29, where she appear on stage with five younger people with autism, aged between nine and 30.
“Things are improving in terms of knowledge and early detection these days for school-aged children, which is very positive, but when I was 18 there was no understanding of autism at all,” she said.
“And for adults with autism today, there is still a stigma there and very few, if not any, support groups or adequate services for adults exist, particularly when it comes to access to employment opportunities.
“That’s something I’m trying to raise awareness about and push for in my local area [Sydney’s south-eastern suburbs], and I’m now awaiting correspondence from federal assistant minister for disability services Jane Prentice.
“I’m not going to give up.”
Ely, who runs the social network site Maroubra Community and previously worked as an administrator for Maccabi NSW Basketball Club, experiences elevated senses, anxiety attacks, sometimes struggles to express herself properly in conversations and hold eye contact, struggles with self-esteem and has a sensitivity to loud sounds and background noise.
Currently unemployed, she lives with her parents, but since being diagnosed and gaining access to the National Disability Insurance Scheme (NDIS) last November, “the opportunity to have a plan has been very helpful”.
On the flip side, Ely has “an awesome long-term memory, and an amazing visual mind which is always full of ideas.”
“The biggest advice I can give is that respect and acceptance of people with autism – and working towards a more inclusive society – is so very important.
“Because autism is not often talked about, it is misunderstood, ignored and stigmatised.
“It can sometimes feel like an invisible condition to others.
“People tend to give it really specific checkbox descriptions, but in reality there’s a whole variation as to what we are really like.”
Ely believes there a lot of Jewish kids with an adult or child on the autism spectrum, and she hopes to be a voice to raise awareness “for people who are in search of support, just like me”.
Autism and Me is a free event at Randwick Town Hall from 1pm on Sunday, April 29.
Booking is essential – visit http://bit.ly/autismandme.