"I was totally unprepared for the disruption it would cause in my life" she says."It's hard to describe to anyone who has never seen autism. The twins have great difficulty in expressing themselves, and can get extremely frustrated by their own limitations. Just like the character in Rain Man they are totally rigid in their routine, and if anything changes that routine they often react quite violently. For example, they come with me when I take my older boy to school. I take them on their reins, and they love it. But they associate going to the school with going to the park afterwards. If I decide to go a different route they throw terrible tantrums. It's quite frightening."
Luckily for Tina she lives in Brighton, where a new scheme to help autistic children is being piloted by her local education authority, in a project run by the Children's Society. The Picture Exchange Communications System (PECS) was developed in the US by a speech therapist and a psychologist, who recognised that many autistic children can understand pictures far better than they can understand the spoken word.
The PECS system is quite simple. The child has a book full of pages of cards depicting various images that are attached by Velcro. He or she pulls out the appropriate card and hands it over to the parent. For example, a child may give the parent a picture of a drink and then the parent gives the child the drink, while saying the word "drink".
"The advantage of PECS over a system such as signing is that autistic children don't tend to look at people. They are often very visual and can do all sorts of things such as jigsaw puzzles, and so PECS plays to their strengths," explains Jenny Cross, team leader of the Children's Society's Portage Project, who is helping Tina to cope with the boys.
"We first of all had to find out what would motivate the twins, so at their initial assessment they were presented with eight pictures of different types of food. We then simply recorded which food they went for first. Not surprisingly, chocolate buttons came out tops. So we began with those, and each time one of them gave Tina the card with a picture of chocolate buttons on it, he was rewarded with a quarter of a chocolate button," says Jenny.
The PECS programme has had excellent results in the US. In a five-year study of autistic children on the PECS scheme in Delaware, 76 per cent of them began to use speech within a year. Although the aim of the programme is not primarily to teach children to speak, but to give them a functional alternative means of communication, researchers on the Delaware project found that, once children get used to using up to 100 pictures, they often start to speak as a matter of course.
When Tina's twins first got the hang of PECS, it was an emotional moment. "People find it hard to believe how these children can break your heart," says Tina. "They are totally wrapped up in themselves and live inside their own heads. Not only do they have difficulty making sense of words, but they also find it hard to read facial expressions and gestures, so there is a total lack of communication. The twins had reached the point where they were really frustrated at not being able to tell me what they wanted. When Daniel picked up that first card and handed it to me, it was pure magic."
Sue Baker, an educational psychologist for West Sussex, believes the PECS system is the best scheme around: "A lot of schemes have been developed using pictures which the child pointed to. But autistic children don't realise that you need someone else in the room to communicate to. Pointing is no good if the mother is out of the room. When you have to exchange a picture, it means the child is forced to engage with another person. That's why I believe it is so successful. Most autistic children live in a world of their own and have no concept of why it's so important to interact with other people. They really don't understand how they are supposed to interact with the rest of the world. The beauty of PECS is that it helps both the parent and the child, because both are involved right from the start," she says.
"Some autistic children manage to acquire language skills, but don't understand why it's necessary. One three-year-old I worked with could speak a little, but he would often just repeat what other people said. He couldn't use words in a useful way. As soon as he started on PECS, he `got the picture' and started to say `drink, banana, biscuit' as he handed the cards over. Once he could see pictures of the words, things started to make sense to him. Then he twigged that the noises coming out of his mouth meant something and caused things to happen. It was an incredibly exciting moment for the parents."
Judith Gould, a clinical psychologist and an expert in the field of autism, is a speaker at a conference in London later this month. "We'll be looking at a variety of different approaches that can help autistic children. Early assessment and intervention is the key, but it is important to remember that autism is a spectrum disorder, which means the effects can vary from mild to extremely severe. I would never say one system of intervention suits every autistic child. PECS has a place, like many other programmes. What's important is to find a system that suits your particular child."
Sue Baker agrees on early assessment: "The sooner a child is assessed as autistic, the better his or her chances of a better quality of life. As soon as a child can recognise pictures, or have some way of reaching for or indicating what they need, they can be started on a PECS programme. One of the main difficulties is that many children are not diagnosed until they are two years old or more. We'd really like to start them sooner than that," she says.
"In the old days, the prognosis for these children was bleak. They were locked in their own world. Now we can see there are ways of improving their lives. If you can structure their environment so they can start to make sense of their world, then you can engage them and they can really start to learn."
For more information on autism, contact the National Autistic Society on 0171-833 2299Reuse content