by Paul Clark
Joshua is a young man who has just finished Year 12. He communicates only with loud grunts and when left alone, he may destroy everything in the room or smear the walls with faeces. His parents rarely go out together, because there are few other people who can supervise Joshua. Joshua has severe autism.
Autism is not well understood outside specialist circles. Some people have a limited understanding of autism based on the film Rain Man. In this 1988 film, Dustin Hoffman played the part of Raymond, an autistic man. The fictional Raymond exhibited socially isolating behaviour including obsessive counting.
People diagnosed with autism usually have difficulty with social interaction, communication, behaviour, or all these things. The scale of difficulty varies between cases. For example, some people may have restricted or delayed speech while others have no speech at all. There are people like Raymond, and there are many like Joshua, too.
There is little understanding in the community that autism causes a spectrum of behaviour, and therefore requires treatment. Joshua’s diagnosis of autism is on the higher needs and lower life skills part of the spectrum. He cannot go into the work force and will be in care for life.
Other children diagnosed with autism, like Donald, have some mild difficulties communicating but with assistance are able to overcome these. Donald received some specialised therapy and education for a year and is now doing well at a private school.
Both Donald and Joshua went to Giant Steps, a school for children who have been diagnosed with autism. Giant Steps began as a primary school in July 1995, in buildings leased from the NSW Department of Health within the grounds of the former Gladesville Hospital. The old residence of the Hospital Superintendent, built in 1842, was cleaned up to house the new school. Over the years, the school has leased other buildings from the Department of Health, and paid all costs of restoration, repair, heritage compliance, fitting out and maintenance.
The school now caters for Kindergarten to Year 12, and the Giant Steps Community College offers a program for young adults after Year 12. Giant Steps is classified as an independent school, a categorisation it shares with Sydney’s elite private schools. However, Giant Steps is a registered charity and charges no fees for students to attend.
Around 45 per cent of the Giant Steps budget comes from state or federal funding. The remainder comes from fund-raising. Funding coordinator Michelle Jocum says that every fund-raising initiative helps, and there are many alternative approaches adopted by parents. These range from the traditional sausage sizzle at local hardware stores to donations from corporate foundations.
There are also numerous events run by committees of parents and staff, such as an annual black tie ball and a road cycling event. “Everybody does something,” Ms Jocum says. “We find out at the end of a calendar year what the budget is going to be and then the challenge is to raise it.”
Barry Irvin AM, the current chair of the Giant Steps board, is no stranger to the corporate world, the source of a substantial part of the school’s funding works. He is chairman of Bega Cheese, and in 2011 received the Rabobank Business Leadership Award for Food and Agribusiness. Mr Irvin first encountered Giant Steps 16 years ago while looking for a school for his autistic son.
He says that corporate donors who become involved with Giant Steps can see the school is working hard to make a difference. “They see the scale of the challenge,” he says. “Giant Steps never asks anyone to feel sorry. We just need some help with funding our work.”
The key to the Giant Steps system of teaching children with autism is integrating the work of classroom teachers and therapists in what is called the trans-disciplinary model. The traditional model for treating children with special needs is that they attend therapy sessions outside the classroom. In the trans-disciplinary model, therapists and teachers work together with the children in the classroom and therapy is integrated as part of the activity during lessons.
The trans-disciplinary model is not unique. The inspiration for its use in Australia came from Canada, where it was seen in action by a group of parents researching the treatment of autism in the 1990s. Mr Irvin says that while the model is not unique, it is rare because it expensive to establish and operate.
The number of teachers, therapists and teachers’ aides required to work closely with the children results in a high ratio of staff to students. With some variation, the ratio is around 65 staff for 75 students, and the cost of teaching each student is around $76,000 a year.
The trans-disciplinary model is designed to meet the individual development and education needs of each child. Verity Millard, a teacher at Giant Steps since 2008, says that teachers and therapists begin with an understanding of the levels of need and skill of each child, and work with the child’s parents to set goals.
Educational goals are important and, for all children, these are linked to the NSW school syllabus. Ms Millard says the impending change for all schools to a national curriculum has caused some concern at Giant Steps as the initial draft of the new curriculum had little consideration of special needs education.
“The second draft is better. It’s always a matter of taking what you can from the curriculum. At Giant Steps we break the curriculum down ourselves to match the rate of progress of the student,” she says. “We always make it work.”
Trish Karedis, school coordinator for Kindergarten to Year 6, says that for the teachers and therapists to work together effectively, constant coordination and an understanding of student routine is required. The therapists have to move between classrooms, and sometimes teachers have to cover other classes.
Children with autism require adherence to a routine and disruptions to it can place extra demands on the staff. Ms Karedis says the team members support each other and that the support is needed if they are having tough day. She used to be a public relations consultant, and nothing she experienced in that career compared to the emotional rewards of teaching at Giant Steps.
“It is satisfying in a way that is different to working at a regular school,” she says. “At Giant Steps there is a sense of enthusiasm, and also a sense of calm.
Everything from the smallest thing to the largest thing is focused on delivering for the students,” she says.
Helen Appleton is in her eighth year working at Giant Steps. She started as a
teacher and then trained as a psychologist. As the Giant Steps psychologist, she has many responsibilities both in and outside the school. Ms Appleton finds that people who are not closely connected with someone diagnosed with autism struggle to understand the spectrum. Even taking autistic children to a medical appointment can be difficult, as hospital or general practice staff may not understand the autistic child’s needs and behaviours. Some behaviour may be misinterpreted as wilfully naughty, or the child may be unable to express that they are in pain or answer questions in the usual way.
Ms Appleton also assists the siblings and parents of children with autism.
“The whole social sphere shrinks for a family when there is a diagnosis of autism,” she says. Ms Appleton says that the stress for the family is significant, with many families experiencing difficulty coping.
“There is a huge grieving process for parents,” she says. “They don’t realise how many expectations they had for their child until those expectations can’t be met. It’s known as complicated grief because it has effectively no end.”
Many children diagnosed with autism are at the low needs, higher skilled, end of the spectrum. Some are able, as Donald did, to move on to mainstream schools.
Kerrie Nelson, principal of Giant Steps, says that the school tends to have more children with high support needs as a consequence of moving children on to mainstream schools when they are ready.
The school consults with parents in a continuous assessment process to consider where the needs of each child will be best met.
“Giant Steps is transitional for some children. We should not retain them at Giant Steps because it is easy,” she says.
Very little at Giant Steps is easy. The staff and parents make many things
look easy, but it is apparent how much work lies behind every class and every activity that happens each day. Giant Steps is a place that inspires hope, and imparts a sense of perspective. Its work is directed at making practical differences in the happiness and capabilities of children, young adults, and families.
“When people meet the staff they can see how professional they are,” says Barry Irvin. “It would be difficult to duplicate the quality of the current team. There are many people with passion but passion alone does not get the job done.”