The United Nations has declared that 2 April each year will be World Autism Awareness Day, with an aim of bringing more attention to the condition and help give a voice to the millions of individuals who are undiagnosed, misunderstood or looking for help.
An estimated one in 100 people has autism and autism is diagnosed in almost four times as many boys as girls.
Just as autism is a spectrum of disorders, there are many answers that add up to give the bigger picture of autism. For this I enlisted the help of a number of different autism experts: doctors, psychologists, people living with autism and support groups. Thanks to everyone who gave up their time.
This blog is for all those who wish to know something more about the spectrum that is autism. I have provided a number of links for those interested in finding out more.
Doctors and scientists
“Autism is a description of behavioural characteristics which may bring a person great challenges but also great strengths.” - Dr Lauren Taylor, a Psychologist from the University of Western Australia. Lauren recommends people seek information from the National Autistic Society, the leading UK charity for people with autism.
“Autism is term that describes a certain pattern of social, communication and other behaviours in humans, and all of the wonders and challenges that these bring.” – Professor Andrew Whitehouse, a psychologist. Andrew represents the Cooperative Research Centre for Living with Autism Spectrum Disorders (Autism CRC).
“Autism is an umbrella term for a set of highly heterogeneous neurodevelopmental conditions which share difficulties in social communication and restricted and repetitive behaviours and interests. These are generally present from early in life with onset variable over the first two years. In the absence of known causes and cures the best approach to supporting individuals with autism is early identification, diagnosis and early intervention. Most people with autism will need some supports throughout their lives.” - Professor Cheryl Dissanayake, Director, Olga Tennison Autism Research Centre, La Trobe University
“Autism is when subtle changes in neuronal wiring turn everyday social interaction and sensory processing into a monumental challenge.” - Elisa Hill, University of Melbourne. Elisa recommends the Simons Foundation Autism Research Initiative (SFARI) web site.
“Autism is a spectrum of developmental conditions, caused by a variable and complex combination of genetic and environmental factors, in which altered brain maturation affects various behaviours, including social interaction and communication.” – Professor Tony Hannan, Florey Institute of Neuroscience and Mental Health, Melbourne
People living with autism
“Autism is a difference in experiencing, being and doing” - Dr Emma Goodall who is on the autism spectrum.
“As an autistic woman, wife and mother, autism is just a different way of sensing the world. No cure needed.” - Tina Richardson, person on the spectrum.
“Autism is part of what makes me me. I like being me so it's hard to say it in overly negative terms” - Jeanette Purkis, also on the autism spectrum.
“The good, the bad and everything in between.”- Dr Sara Hassan, mother. Sara also went on to say:
“People often wonder what it's like having a child with autism. It's best described as follows: it's having a child with the impulsivity of a toddler but with the strength of an adult. You are constantly on your guard, during every waking minute. It's the inability to truly relax at the park or at the beach. It's rejecting kind invitations to friends’ homes because you cannot deal with the chaos that may ensue when your child's impulsivity rears its head. It's the staying up at night worrying who will take over the reins of care once you’re gone. It's the crippling fear of expanding your family, because one child with a disability is hard enough. It's the disdainful stare of strangers devoid of understanding or compassion. It's the tears of gratitude at every small accomplishment. It's the promise that one day, every tear, every hardship, every sacrifice, will be worth it. It is the kindness, compassion and support of those around us that make this journey bearable.”
Next, in the three awesome YouTube clips below, young people talk about what it’s like to live with autism and advise on how to treat a person with autism with respect and dignity, like you would any other person:
Finally, read this guide: How to Explain Autism to People
Watch, read and learn.
AMAZE is the peak organisation for Autism Spectrum Disorder in the state of Victoria. Here is an abbreviated version of their definition of autism.
Autism Spectrum Disorder (ASD) is a developmental condition which affects individuals in two main areas:
- Individuals have impaired communication and social interaction
- Individuals have restricted, repetitive patterns of behaviour, interests or activities
ASD affects the way that individuals are able to interact with others and they often find the world to be a confusing place. Difficulty communicating can result in ‘melt downs’ – this differs from a tantrum as the individual does not choose to have a meltdown.
Individuals with ASD often have sensory sensitivities – they may be under- or over-sensitive to any of the five senses.
Every individual with ASD is different.
Some people with ASD have other conditions as well, such as speech and language difficulties, intellectual disability, sleep problems, attention problems, epilepsy, anxiety and depression and difficulties with fine and gross motor (movement) skills.
Other useful and trusted web sites
The Raising Children Network is an award-winning website that connects Australians with tips and tools for everyday parenting, from pregnancy to teens. The Murdoch Children's Research Institute provides expert content and is a member organisation of Raising Children Network.
The website’s information on autism spectrum disorder (ASD) describe it as “a group of conditions that cause people to have difficulties with social communication, to have narrow interests and repetitive behaviours, or to be over-sensitive or under-sensitive to taste, touch, sight or sounds.
They also say that autism spectrum disorder is “a brain-based condition – that is, where the brain hasn’t developed in a typical way.”
They also highlight that:
- The prevalence of ASD has risen since the 1990s. Research suggests that the apparent increase is at least partly because of:
- increased awareness about ASD, so more cases are being identified
- changes in the criteria for diagnosing ASD.
They go on to say that:
Evidence also strongly suggests a genetic basis to autism spectrum disorders – that is, the condition might come from the complex interaction of several genes involved in brain development. One specific gene is unlikely to be responsible for ASD. Rather, it might be that several genes combine and act together. Researchers have found many possible genes that might play a role in the development of ASD. It’s also possible that different gene combinations might explain the differences seen in ASD – for example, why one child is more sensitive to sounds than another.
We don’t yet know exactly what causes autism spectrum disorder. In fact, it’s suspected that there might be several causes. Among these are brain development and genetic factors. ASD is not caused by anything that parents do or don’t do while raising their child.
Their support for parents:
Any young child might behave in the ways listed above at different developmental stages. This isn’t necessarily a sign of ASD. You know your child better than anyone – the key is to talk to someone if you have any concerns about your child’s development.
If you’re concerned about your child’s development, talk to your health care provider about a developmental assessment. Finding out for sure is the first step to helping your child and getting services and programs suited to your child’s needs.
It’s important to get help and support as soon as possible. The sooner children get intervention services, the more effective these services can be.
A paediatrician, psychiatrist, psychologist or other professional trained in ASD can diagnose ASD. They’ll use a combination of behaviour tests (watching the child play and interact) and interviews with parents about the child’s development.
Suggested Raising Children Network links:
- The award-winning Children with ASD & Disability app – videos, articles, resources, parent stories and support services and your fingertips
- Early signs of autism spectrum disorder
- Early intervention for children with autism spectrum disorder: getting started
- Types of interventions for children with ASD
- Encouraging cooperative behaviour in children with autism spectrum disorder
- Autism spectrum disorder and family relationships
- Emotional development in children with autism spectrum disorder
- Play for children with autism spectrum disorder
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