Austism spectrum disorders
There are many disabilities affecting children and adults that are notobvious. Autism, which affects up to 31,500 children and 100,000 adults in Australia*, is one of them.
Laudie Miate remembers clearly how it felt to be told her child had autism. ‘I was in shock for a long time,’ says Miate. ‘My husband was in denial too. My eldest girl is fine, and when Jonathan came along I didn’t think there was anything wrong.
He was my first boy, and he was a quiet baby who used to crawl off and do his own thing. He had three other cousins of the same age, and it was my sister-in-law who first suspected that there might be something wrong and came over with this book on autism.’
The term Autism Spectrum Disorders (more commonly referred to as ‘autism’) is an umbrella description which includes Autistic Disorder (sometimes called infantile autism or childhood autism), Asperger’s Disorder and Atypical Autism.
Autism Spectrum Disorders (ASDs) are lifelong disabilities that affect the way a person communicates and relates to other people and the world around them. People affected by autism typically display major impairments in three areas:
- Social interaction
- Behaviour (restricted interests and repetitive behaviours)
It is not a mental illness and it is not caused by trauma or poor parenting. Current international research suggests that the prevalence of ASDs is 65 in every 10,000 people* and that autism affects four times as many males as females.
There is no single known cause, although recent research has identified strong evidence of a genetic factor for many people. For some individuals, however, there may be evidence of damage or developmental abnormalities in the brain occurring before, during or soon after birth.
The Autism Society of America estimates autism is the fastest growing developmental disability in the US with an annual growth rate of between 10 and 17%. In the UK and in Australia, paediatricians, teachers and others are reporting a sharp rise in school-age children with ASDs – however this anecdotal evidence is unsupported by statistics as current data collection is inadequate.
People with autism vary enormously. Its effects may be mild or severe. Not every characteristic is evident in every person, and different features of autism may be displayed in different contexts.
Most autism sufferers require life-long care. That’s why the Autism Association of NSW uses the statement ‘Autism affects one in 100 Australians’ as an indicator of the impact of autism on all family members. Early diagnosis and treatment aimed at teaching the child skills to transition into mainstream society can often greatly minimise its effects.
Although autism is almost always present at birth, it often becomes evident only at age two or three. Sometimes, it takes an outsider to notice that something is not right.
Catherine Forster recalls that she didn’t think there was anything wrong with her son Rohan other than he needed a little help with speech therapy. ‘Looking back I was actually quite cavalier about it,’ she says. ‘Rohan was an active little boy and behaved much like his two older brothers. And it was my speech therapist who suggested that we investigate further.’
Psychologist Anthony Warren, Director of Outreach and Consultancy at the Autism Association of New South Wales (AANSW) advises parents to watch closely for the early indicators of autism.
Warren says, ‘If you suspect something is wrong, be persistent. Ask for an assessment by a paediatrician or for referral to the child development unit at your local hospital. Or contact your local community health centre.’
Waiting lists for services, including government-funded services, from diagnosis to speech pathology to early intervention programs can be long. ‘From parents’ first concerns to diagnosis can take a year or longer,’ warns Warren. ‘For those with milder presentations, expect provisional diagnosis when the child is under 3 and a half years of age. Assessment can be an ongoing process; provisional diagnosis enables access to services and support.’
Concerns about your child’s communication and language development should be referred to a speech pathologist. Also, contact your state autism association for parent information courses.
The earlier problems are investigated, the earlier ASDs can be identified. Indeed, the biggest hurdle is often getting into the system. Once there, parents are quickly embraced by a supportive network of professionals and parents, through services such as Someone To Turn To or Parent to Parent Support Program, run by the Autism Association of NSW.
What treatment is best can be controversial but there is consensus that early intervention followed by specialised early schooling is critically important to enable people with autism to achieve as independent a life as they possibly can.
The AANSW runs a variety of early intervention programs, such as Building Blocks and Jigsaw programs. Other possibilities include:
- The Hanen Parent Training Program, accessible through some speech pathologists and early intervention services
- The Picture Exchange Communication System (PECS), accessible through speech pathologists
- Intensive behavioural intervention programs like Applied Behaviour Analysis (ABA)
Warren advises, ‘The most effective intensive programs are those which assist parent’s skills, are enjoyable for the child and do not use punishment. Programs must suit the needs of the child and their family.’
Once a child is old enough for school, options range from special support in a mainstream school to specialist schools where the environment is highly individualised, structured and supportive.
School support services can vary enormously from state to state. Marcie Cronstedt, the mother of a school-aged son with autism, discovered this when her husband Mal was seconded from WA to join the NSW Fire Brigades in July 2003.
Cronstedt and their two children followed, moving from a house in Perth with a big backyard kitted out with trampolines and swings to an inner city apartment above the fire station. The move also meant that her son’s schooling was affected. ‘It was a huge disruption for Daniel to go from attending school full-time in Perth to hanging out with mum. It was devastating for everybody,’ says Cronstedt.
Although having a child with ASD can place enormous strains and stresses on families and relationships, parents also emphasised the joy from their special child. Says Laudie Miate of her son, ‘Jonathan makes us laugh so much. He has touched so many lives and has taught us to appreciate the simplest things. It would be a dream come true to have a cure for autism, but I can’t imagine life any differently now. I wish Jonathan the best. He is who he is and I love him dearly.’
*based on current international research which indicates a prevalence of 65 per 10,000 population where ASD is defined strictly according to DSM-1V and ICD criteria, i.e. criteria met for Autistic Disorder, Asperger’s Disorder or Atypical Autism, and most recent census population figures.
Asperger’s Syndrome (AS)
AS was first documented in 1944 by Hans Asperger, who described a pattern of behaviour in young boys. The boys appeared to have normal intelligence and language development but exhibited some autistic behaviour (were distant) and had poor social and communication skills.
One of the most obvious features of children with AS is that they tend to be very literal – tell a sufferer to ‘jump to it’ and that may be just what they’ll do. They also lack social skills and may seem odd to other children.
There may be difficulty with creative or imaginative play and they may be oversensitive to sound. Some AS sufferers may indulge in ritualistic behaviour, such as hand-flapping, finger-twisting or rocking, while others may need to follow a set order of behaviour for every day activities, such as leaving the house or going to bed.
Early Indicators of Autism
No single ‘red flag’ necessarily signals autism. Usually a child would present with several indicators from two or more of the following categories.
If you are concerned about your child’s development, talk to your GP about a referral to a paediatrician for an autism assessment
- Not responding to his/her name by 12 months
- Not pointing or waving by 12 months
- Loss of words previously used
- Speech absent at 18 months
- Suspected hearing loss
- No spontaneous phrases by 24 months
- Selective hearing, responding to certain sounds such as a siren or advert on TV, but ignoring the human voice
- Looks away when you speak to him/her
- Does not return parent’s smile
- Lack of interest in other children
- Often seems to be in his or her own world
- Is unable to follow simple instructions such as ‘Give me your shoes’
- Has inexplicable tantrums
- Has unusual interests or attachments
- Has unusual motor movement, eg flapping or rocking
- Is overactive and uncooperative
- Has difficulty coping with change
- Afraid of some everyday sounds
- Uses peripheral vision to look at objects
- Eats a very limited range of foods
- Preoccupation with certain textures
- Walks on tip toes
- Prefers to play alone
- Very limited social play such as ‘Peek-a-Boo’
- Play is limited to certain toys
- Plays with objects in unusual ways such as repetitive spinning or lining up
By Doreen Koh
Autism Association websites:
Autism Information Line: 02 8977 8377 or 1800 069 978 (NSW only)
Other helpful sites:
For information on support for siblings go to Siblings Australia.
Peoplemaking (specialist bookshop) has an extensive stock on autism and many other life affecting conditions. Contact ph 03 9813 2533.
The information provided in this article is intended as a guide only. Always consult your doctor if you or your child is suffering any medical complaint. Any websites referred to by Australian Family contain information moderated by government and medical institutions or organisations.
This article was first published in Australian Family Magazine, June 2004. Updated July 2009.