When Mike McRae took his son Asher to see the film Toy Story 2, the five-year-old couldn’t bear the loud music and strobing visuals. Asher turned around in his seat and put his hands over his ears.
It is the reality for people on the spectrum that so many of the sights and sounds of everyday life can be a cause for distress and anxiety. Mike says in those situations, the family has learnt a survival instinct.
“We have a child that we are responsible for and his well-being comes first,” Mike said. “So, how do we ease his discomfort? Ninety percent of the time, it’s easy – we just leave.”
There are approximately 230-thousand Australians – or one-in-70 – on the spectrum. And the increasing number of people diagnosed with the condition has created a movement that is demanding society make more of an effort to give these people the everyday experiences that most of us take for granted.
Asher is now eight and Mike says with some early intervention, his son really doesn’t present them with many serious challenges.
“Asher is extremely communicative and he has no real social challenges. However, he has difficulties understanding certain social cues and he has some difficulties in how he actually responds in certain situations. And he does have a reaction to over-stimuli.”
Autism is a lifelong developmental condition that can create a number of challenges. These include difficulties communicating and interacting with others, sensitivity to everyday sounds, lights and textures, and, for some, intellectual impairment or learning difficulties.
As a result, they can spend a lot of time and effort avoiding situations that trigger distress and anxiety. Unfortunately, many of those triggers are part of the routine of everyday life. Traffic congestion, noisy school environments, and the bright lights and sounds of a shopping mall can be a menace for people with autism. But the worst thing they can do is retreat from life’s experiences – routine or not.
Liza Cassidy from Autism Spectrum Australia says her organisation and other advocacy groups have been working with public places and businesses to be more accommodating in catering for people who have particular sensory and social needs. And they are making progress.
Coles has introduced ‘Quiet Hour’ shopping once-a-week at some of its stores. During the hour, in-store music is turned off, there are no PA announcements, trolley collections are avoided, lights are dimmed, and the volume on scanners and registers is turned down.
“Even though we have had a great reaction from the autism community, we have had a number of people who have come to us outside of the community, who have just said, ‘We just prefer shopping in an environment that’s not so in your face’,” Ms Cassidy said.
Other organisations including Surf Life Saving Australia, the Museum of Contemporary Art in Sydney, and the National Museum of Australia and Questacon in Canberra have introduced similar initiatives. Mike McRae says it does make a difference.
“There are movie times where they’ll have the lights off a little bit and the volume turned down, so children aren’t overstimulated. There are places like Questacon that are aware of how we do still want to have an experience but one that can tone down stimulation.”
Questacon, as the National Science and Technology Centre, is a popular attraction for children but many of its displays have the triggers that can make it stressful for people with autism.
Tristen Hoffmeister, the centre’s senior manager for tourism, said they have held autism access days, opened early and only invited families who have children on the spectrum, and provided pre-visit materials for families so they can organise their visit.
“We modified exhibits to make them more accessible in a sensory sense so we looked at some of the lighting that’s too bright and too flashing,” Mr Hoffmeister said. “We’ve even looked at areas that could be too dark. We turned off some of the noisy exhibits as well and then before we did the day, we also did a lot of training with the staff.”
While many of these settings are one-off or irregular, Liza Cassidy says much of Autism Spectrum Australia’s work is trying to make the everyday, routine and essential features of life more autism-friendly. A priority is developing ways to improve the classroom environment.
The Australian Institute of Health and Welfare has conducted research that found people with autism can face barriers in an education setting. In 2015, there were 83,700 children (aged 5-20) with autism attending schools in Australia and that 85 per cent said they had difficulties that included fitting in socially, learning and communicating.
Mike McRae says, in all modesty, his son Asher has shown some remarkable academic skills. But he fears his potential might not be realised in the standard education environment, including exams.
“There needs to be a greater understanding for schools, for teachers and academics to say if we are going to ascertain the abilities of certain kids, we need the right tools to do that, because the one-size-fits-all is not going to fit kids with ADD or kids with ADHD.”
Mr McRae acknowledges that schools and community organisations are providing more tailored assistance as well as counselling and disability support, simply because there are so many more children who have these needs.
One of those organisations in Canberra is Marymead which has established an autism centre. Helen Gardner, who is manager community engagement, said they cater for a range of needs.
“Some of these groups might be for carers of someone who has autism, the partner of someone,” Ms Gardner said. “We run support groups for families with children that are newly diagnosed, young kids, we run groups that are for grandparents and extended family members.”
All of which points to a growing understanding of the condition and awareness of how it impacts on an increasing number of Australians.