Autism Spectrum Disorder (ASD) affects 1 in 70 Australians, but despite its prevalence, it’s a condition that remains largely misunderstood. “Myths that everyone’s like Rainman and can recite a phone book or has a photographic memory are common, but autism occurs on a spectrum and abilities are varied between people,” explains Nicole Hurley, head of partnerships and fundraising at Autism Awareness Australia (AAA) . “The biggest myth about autism is that everyone’s autism is similar, however that’s completely untrue,” Nicole says. “How the condition presents is highly individual. If you’ve met one person with autism, then you’ve met one person with autism. You need to overlay that with someone’s personality and everything else to know what they’re really like.” Here, Michelle answers the most frequently asked questions about Autism Spectrum Disorder.
What is Autism Spectrum Disorder (ASD)?
“Autism, or ASD, is a child development condition that affects the way children develop and relate to the world,” says Nicole Hurley, head of partnerships and fundraising at Autism Awareness Australia (AAA) who has lived experience as a parent of a child diagnosed with ASD. Characteristics usually present in early life, but are often not recognisable until a child is two or three years of age1. “Autism Spectrum Disorder (ASD) affects one in 70 Australians,” Nicole says. “AAA represents people on all aspects of the spectrum. There’s a lot of people who can contribute to society and live very fulfilling lives but there are others who might be nonverbal with profound needs that require full-time care. By no means do we consider autism a superpower, there are a lot of challenges.”
What tests diagnose autism?
“Some of the behaviours that professionals look for when going through the diagnostic process are around social interaction and communication problems,” Nicole says. “You might see a child who’s going through that process having trouble with back-and-forth conversation or in sharing emotions with other people. They might have difficulty with understanding other people’s body language, facial expressions or other social cues.
“There can be restricted and repetitive behaviours – some common signs include toe walking, hand flapping and a really intense interest in certain toys in an unusual way. Often someone with autism has a routine that needs to be very predictable and being outside of those routines can be really impactful. Sensory profile can also come into it, so they might be under-sensitive or over-sensitive to sound, smells or touch.”
Is autism caused by vaccination?
“Autism is not caused by vaccination,” Nicole says. “There have been many large, gold-standard, evidence-based scientific studies which have been done and there is absolutely no scientific evidence to support that myth.”
Is autism related to parenting style?
“Another myth is that autism is just down to bad parenting but it has nothing to do with parenting,” Nicole says.
Why are autism diagnoses increasing?
A greater awareness, particularly with regard to autism in girls who historically went undiagnosed, is responsible for the increased diagnosis. “With knowledge and education comes greater awareness,” Nicole says. “Instead of being mislabeled as the naughty kid, there’s more information about how people might be on the spectrum which helps with identifying their strengths and abilities and challenges. We also know more now around autism in girls whose traits can be masked in very different ways to boys,” says Nicole.
Why is autism now being diagnosed in adults?
“It’s true that diagnoses for adults with autism are increasing as well,” Nicole says. “Sometimes they were missed altogether or children were misdiagnosed with anxiety or mood disorders. Often it’s happening when a parent recognises the same traits in themselves as their child when their child is going through an autism diagnostic process. They might be thinking, ‘Hey, actually that’s me’. But 20 or 30 years ago there wasn’t as much information available.”
While some adults go through a formal diagnostic process, others don’t and will instead self-identify as having ASD. Like other health conditions, it’s never too late to talk to your GP if you want to know more. “There’s a few reasons people don’t go through the diagnostic process: first, it’s expensive and second, it’s really hard as an adult to get the diagnosis. So if you’re already putting your kids through it, you just might just focus on taking care of them for now and later on you’ll go and seek that diagnosis for yourself. But it’s still important for adults to seek that diagnosis to help with self-identification and understanding yourself if that’s what you want to do.”
Why is it important to talk to your GP early if you’re worried your child may have autism?
“Getting a child diagnosed opens up opportunities for early intervention,” Nicole says. “And we now know that early intervention means better outcomes for a child. It also opens up access to funding to support your child, whether that’s through therapy or school support. When kids go to school with a diagnosis, they can put scaffolding in place to help with learning, making friends and generally having better outcomes. And better outcomes is what AAA wants for everyone with ASD. We represent all their voices so we can empower autistic individuals and the families who love them.”
How can I be more inclusive of people with autism?
“Increasing visibility of disability is about being seen and being included. If you learn and know better, you can do better with your actions by including people. You might not know that your children are in a class with autistic children so it’s about inviting the quirky kids to the birthday party or having a conversation with people if you have friends that have children on the spectrum. Just be open.”
Nicole says demonstrating acceptance can be as simple as understanding when someone prefers to keep their headphones on during conversation or they avoid eye contact. Simply being aware that people may have different needs and preferences can make life easier for people with autism and their families.
“You can always ask about someone’s preference and check if they’re okay,” Nicole says. “But if you are not sure of what’s going on and there’s an opportunity to have that conversation, you can. Just don’t judge and don’t make judgmental comments. It can be really hurtful to the person and also the family that love and support them. Also, don’t point, don’t stare, don’t make funny faces. My son’s ridiculed a lot from that in the public space. I think society has a lot to do in terms of being inclusive.”
Nicole points to initiatives like quiet shopping hours, quiet Santa, zoo or museum visits and the opening of sensory rooms at big public events like football and concert as being helpful to increasing participation of people living with ASD. “Sensory rooms provide a safe space for families to let their children regulate their senses and have a place to retreat to just chill, get in tune with what the outing is and then maybe return back to that environment,” Nicole says.
References
- Autism Spectrum Disorder (ASD): Syptoms, diagnosis and treatment [Internet]. Health Direct [cited 17 May, 2023]. Available from https://www.healthdirect.gov.au/autism.