I was working full-time and didn't realise that my four-year-old son, Adam, wasn't playing like other children. I didn't notice a lot of things. I was a working mother and left a lot to others.
Then I noticed him flapping his hands. He wouldn't make eye contact. People bought him toys and he wouldn't play with them. He was diagnosed as autistic. Often people are shocked by the diagnosis but I was pleased because I thought: now I can get help."
Diana is telling her story to parents who have gathered to learn about a unique approach to helping children who are behind in their development.
The meeting is oversubscribed and extra chairs have to be brought in for latecomers at the Spark centre for children with disabilities in Bethnal Green, east London. Sibylle Janert, the psychologist running the session, says the neuro-developmental approach can make a huge difference to the lives of children and their families – but there is no magic wand.
Hers is a simple, practical method, inspired by the knowledge that children with autism, like any others, have the potential to develop and grow socially, emotionally and mentally. We have come to think of autism as something terrible and static, she says, but if we address problems early enough we can help children to join the world of social relationships.
Diana says Adam has made a lot of progress since she began to work with Janert. He loves sharing play with others and is beginning to talk. "Sibylle has opened my eyes to how you need to be there for your child and I have given up work," she says. "Before I would give him a toy and let him get on with it. Coming here I have learnt that you can't leave them to do their own thing, even normal kids; you have to join them, take turns and play with them."
The author of three books on supporting autistic children, Janert works with families through MindBuilders, a not-for-profit organisation aimed at empowering parents through family-centred intervention. Now the London Borough of Tower Hamlets has commissioned her to work with the parents of children under five and other professionals who support them.
She is the first trained home consultant in the UK for the method – Play and Language for Autistic Youngsters (PLAY) – which was devised by Dr Rick Solomon, the director of the Ann Arbor Centre for Developmental and Behavioural Pediatrics in the United States. In October, Solomon is visiting London to conduct workshops with Janert for parents and professionals.
At the core of the programme is the idea that the people who spend the most time with the children – their parents and carers – are the ones who can make the biggest difference. Children with autism find it difficult to process the sensory information coming at them and adapt by concentrating on one thing, such as running a toy car back and forth or jumping up and down, says Janert. She calls this a comfort zone activity; the actions are repetitive because the child can't think what else to do. They are solitary and if you try to stop them, they get anxious and do it even more.
That children can focus on one thing means that they can tackle other things and learn to share and communicate, she says. "Don't try to stop him but join him," she says. "Tackle the solitary behaviour by giving him a taste for interactive play. Engage him through shared pleasure, not coercion."
She shows a video of Nabil, aged four, who was unresponsive and did not make eye contact. He was on the floor, moving a car up and down, lost in his own world. Janert gets down next to him and guides his hand, showing him how to move the car up and down his arms and on to his head. He laughs, and while he is enjoying the game, she takes the car from him and hides it under his jumper, then gives it back. Delighted, he tries it himself. By now he is not frightened that she will take the car away and hands it to her to continue. She does the trick again, gives it back and he copies, running it down her left arm, and then on to her right arm for a longer "drive".
She says: "He can sustain a state of shared attention with another person and stay calm and engage in social play," she says. Now, two years after the video was made, Nabil is talking and learning to read.
Parents are keen to share their stories. Doreen says her three-year-old son, Toby, used to stare into a corner or out of the window when anyone tried to talk to him. Other times he would jump up and down. "Since Sibylle has been coming to see us he doesn't look out of the window, he doesn't jump and the only thing he still does is look at the corner, but not as much as he used to do. If he is excited he bounces and he lets me bounce with him. He looks at me and laughs. He has been toilet-trained for a year and he can let me know what he wants."
Dega says she was once desperate for her four-year-old, Yacqoup, to speak but now realises that he can communicate in many different ways. "He was lost in his own world, and couldn't keep still for five seconds," she says. "Sibylle came to our home and showed me how to play with him. He has improved immensely. He can only say a few words but he can communicate and that is the most important thing. He can make choices and he is much calmer."
Children are assessed and placed on a six-tier developmental ladder, beginning with level one when they share attention and progressing to higher levels, when they can relate to others, initiate two-way communication, and solve problems. Almost all make some progress and a few, like Nabil, reach levels five and six, which is near normal.
The whole family benefits, says Janert, as she welcomes Sam, mother of four-year-old Kiera to the session. In just 10 months, the relationship between Kiera and her mother has improved almost beyond recognition, she says. From a child with unmanageable behaviour who pushed people away, Kiera is now happy and communicative.
It is almost 11 years since she began her work in Tower Hamlets. While shopping last month she spotted Carl Fofi, the first child she helped. "When I first met Carl he was flapping his hands and didn't play or talk," she says. "The Carl I saw this summer was a strapping, confident teenager who told me casually, that he was doing his GCSEs."
For information on MindBuilders and Dr Solomon's PLAY-workshops (5-10 October.2009) email: info@ mindbuilders-consulting.org; or visit www.reachingautism.org