The kids will be all right

Education can help kids accept their peers' differences
Education can help kids accept their peers' differences Photo: Getty Images

Hell is other people. - Jean-Paul Sartre

Amanda Curtis has heartbreaking familiarity with this notion, famously put by the 20th-century French philosopher and writer. But she does not blame the people who treated her young son harshly, or who avoided and ignored him, causing him physical and emotional pain.

They did not know Philip is different to them, that he has Asperger's syndrome, an autism spectrum disorder characterised by repetitive, quirky and even obsessive behaviour and by difficulties with social interaction.

Determined to help her son and the many others like him - it is estimated as many as one in 110 children is diagnosed with Asperger's syndrome - today's guest in The Zone has written an unprecedented book: there are many books on the condition per se, but Curtis' is written primarily for the classmates of children with Asperger's.

In our interview - the full transcript you can read here -  she tells a story of courage amid anxiety and struggle, of creativity and collaboration. Above all, it is a tale of one of the most powerful emotions conceivable - a parent's love for their child.

A threshold question for the parents of children with Asperger's syndrome is whether to publicly disclose the situation. Curtis counsels that if the behaviour of the child with Asperger's is not clearly setting him or her apart from peers, then disclosure is not necessary. That was not the case with Philip, who was disturbing classmates, particularly by grabbing them and sitting disconcertingly close to them.

''For six months we thought we're not going to tell the parents and we're not going to tell the classmates he has got Asperger's. He's having therapy, he'll be OK. And he was not OK; the kids and parents did notice. It was just messy. It was awful.

''The principal suggested we hold a disclosure session and invite all the parents to the school to say 'our son has Asperger's and this is what we're doing about it and this is what it means'.


''And that was great. We had about 20 parents attend. But one of their questions was 'this is all good and we understand this now, but how do we explain this to our children'?''

This is how the book, My Friend has Asperger's, was born. Curtis has a background in business and was used to communicating with a range of associates - staff, suppliers, customers. She realised she could help her son by helping his peers and their families understand how and why he is different.

She and the school began by searching for such a resource - but failed to find it. Curtis started jotting down ideas for the book, and was spurred to write it when she saw Philip, when he entered grade one, continue to suffer the ostracism and teasing he encountered when he was in prep. She decided, too, to disclose Philip's situation by sending a letter and a mini version of the book (the full-sized version of which was to be read to the class by the teacher) to all the families in Philip's class.

She describes the decision as one of the hardest things she has ever done. She was terrified about adverse reactions. Her fears were, mercifully, misplaced.

''The next day I had a couple of mums coming to me teary-eyed saying 'we didn't understand, we did not know that there was a problem; we just thought that he misbehaved. Now we understand and now I'm telling my child to play with him and now we know what to say to my child to help yours.' So it was just overwhelmingly successful.''

Previously, Philip would be left out. Suddenly his classmates were holding his hand, literally and metaphorically. Philip is much calmer now because he knows his peers understand him. His mother, too, is finding some peace and optimism.

As soon as the book came out, Curtis knew she was onto something special. My Friend has Asperger's is being embraced by schools. Curtis, in an enterprising flourish, sent it to Australian-born Crown Princess Mary of Denmark, who has passed it on to the Danish Ministry of Children and Education.

Curtis also contacted former Victorian premier Ted Baillieu, who handed it on to an adviser. Curtis says the government is indicating support and she is hopeful the book will be added to school libraries.

The book has been praised by one of the world's leading authorities on Asperger's syndrome, Queensland-based, English psychologist Tony Attwood, who introduced Curtis to his book distributors. She has an agent in the US discussing publication there. And now she has been asked to produce a version for older students here in Australia.

Curtis' work is about far more than creating peer tolerance and acceptance of Philip and other children with Asperger's. ''I want him to be celebrated. He's cool.

''They are not sheep, they are little leaders in their own right and we should be proud of that … So I thought if I had to get my little boy accepted, education is the key and managing his stakeholders, which are his immediate peers and the parents.

''We underestimate the amount kids understand at the junior level in primary school. They are intelligent and they are flexible. Their minds are not set yet.

''These kids get it. Once they have read the book, they think 'that is why that little boy flaps his hands when he's excited and jumps up and down'.''

Like so many others, Philip was not diagnosed until just before he started school. Curtis believes he would have encountered far less trouble had he - and the family - been given therapeutic support early. She is passionate about the need for early diagnosis, early intervention and a co-ordinated approach by therapists.

She says these families need support. It can be draining dealing permanently with special needs. As many as four in five couples with a child with Asperger's break up. Curtis' marriage has ended.

''Had my son been picked up at three years old and been diagnosed then, there could have been a lot done at that age to prepare him for school.''

Like so many parents of children with Asperger's, Curtis is profoundly tired, but she is pushing ahead, buoyed by the happy change her book has brought to her son's life. Frustrated by the lack of communication she has often encountered between the various therapists helping a family with a child who has Asperger's, she is creating a series of workshops on bullying, psychology, disclosure and stress management (see link below). She will run the workshops with a team of specialists, including a psychologist, an occupational therapist, a speech therapist and a drama teacher.

Hell might be other people, but relationships can be heavenly. People with Asperger's are often totally without guile; they are characteristically unable to dissemble and lie. They tell the truth as they see it, unaware that so doing can sometimes be socially awkward. Their quirkiness and creativity and ability to focus forensically can be enchanting. These are the sort of things Curtis wants celebrated, the sort of things, too, that should be cherished in a friend.

Each day Curtis would drop Philip at prep, she would feel fear, even anguish, for him. She knows bullying can intensify as children get older, and that as many as 80 per cent of children with Asperger's are targeted in secondary school, with 25 per cent physically harmed. ''I think about my little boy entering a high school of 1500 to 2000 students, which is very different from the beautiful, gorgeous little school of 250 students at the moment. I think of the few times I was bullied or teased at school - and I was a pretty regular kid - and of him and his eccentricities and that he will stand out and be bullied.

''That frightens me. My goal is to get my book into as many primary schools as possible, and I can only do that with the help of parents, because disclosure needs to be driven by parents.

''If we can get as many children in junior school now using the word Asperger's like 'asthma', 'nut allergy' and all those other sorts of words as they are going through primary school through to high school, my little boy in high school will have a posse of peers around him, so that if he is bullied or pushed around he'll have a group that will say, 'Leave him alone, he's just got Asperger's, he's quirky, he's fine' and will help protect him.''

From: The Age