Local search for cause of baffling disorder of children

Press, 16 July 1983, Page 17

Local search for cause of baffling disorder of children

By

GARRY ARTHUR

Professor Philip Ney is looking for a big, full-length, stainless steel mirror for the department of psychological medicine at Christchurch Hospital. Not for the purpose of straightening his tie or combing his hair, but for the benefit of dozens of autistic children who will be taking part in a new research programme. It has to be stainless steel, not glass, because the children are likely to kick it to bits, or bang their heads against it. But it will be useful therapy, Professor Ney believes, because autistic children are not only unaware of their parents most of the time, they are also strangely unaware of themselves.

With a big mirror they can be encouraged to look at themselves and explore their own bodies, getting to know themselves. Autism is a baffling condition which is thought to affect 40 or 50 children in a city the size of Christchurch. Professor Ney has been treating autistic children and researching the condition for 20 years. Now he has embarked on a new nine-month research programme with the threefold purpose of bringing all the Christchurch cases together, looking into possible causes, and trying out a promising new drug. Professor Ney also wants to try some other treatments, including an idea of his own which involves the use of a natural botanical

product which he is not prepared to name at this stage. “It has to do with the development of the nerves,” he says. “If there is a chance of something neurologically wrong in terms of the development of nerve pathways, it might help if we can catch it early enough. There is even evidence that the development of nerve connections in the brain goes on into adult life.”

Autism is a puzzling condition that is noticed in about four children in every 10,000 at an early age. “From 18 to 24 months they tend to be withdrawn,” says Professor Ney in his notes for parents. “They seldom enjoy playing or communicating with others, seem to be sensitive intelligent children with good memories, but poor in learning.

“They tend to ignore their parents or disobey instruction. Their speech is poorly developed. They are often fascinated by water, music, or objects that spin.”

He says most parents are very perplexed by such a strange combination of behaviours. Some feel that they have made some serious mistake in handling these children because they developed normally for a period and then stopped. Autism is found all over the

world, and in the children of all kinds of parents, so Professor Ney thinks the cause is probably not genetic. Neither does it seem to be caused by the way children are educated or trained by their parents.

Very sensitive hearing appears to be a common factor, and it may be that autistic children find human voices painfully loud. They would then avoid people and not want to talk.

Autistic children appear to have a deficiency in using language, but Professor Ney says they occasionally confound this view by speaking very clearly and elaborately. “The parents of autistic children are all desperate,” he says. “They are all beautiful, good-looking children, and it is disturbing to anyone to see a good-looking child getting further and further behind. If there was evidence of brain damage, it wouldn’t be so hard, but there is not. It tears the heart out of parents.” As far as medicine can determine, says Professor Ney, autistic children are not mentally defective or damaged. In all probability the autistic child has normal mental abilities but these are so tightly locked up that he cannot function. They tend to be retarded in their development because they are

afraid to explore their world or learn by their mistakes. “It is very hard to predict which autistic children will become normal,” he says. “Many do, but it depends so much on parents’ patient persistence. Some autistic children complete formal education and lead almost totally normal lives. Others learn enough to get self-supporting jobs but remain isolated people. Some may need long-term residential care.” Successful treatment depends on patient re-education of the child by the parents. Professor Ney has found a combination of behaviour modification, counselling, and (sometimes) drugs, to be most effective. Just last week he had a letter from the parents of a girl he had treated at the University of Illinois when she was three years old, inviting him to attend her high school graduation. He treated her for about nine months, followed by letters of advice, and although she is probably still painfully shy, her scholastic success shows that she is coping well with life. For his research project, Professor Ney wants to "collect” all autistic children in Christchurch and their parents. “They really do need each other for support, encouragement, and mutual understanding.” He wants parents to get in touch with the support group, Contact, whose secretary is Mrs Lesley Gair (telephone 517-831).

The children will be investigated to try to uncover the causes of their condition. One interesting lead is that they have a high level of seratonin in their blood. It is a chemical associated with the transmission of nerve impulses, and if the level is too high it could be the cause — or the result — of autism. Autistic children are very noncompliant and oppositional, Professor Ney says. “They tend to use their intelligence to frustrate people. Why they are like this is a Part of our treatment programme will be to train children to be more compliant.” He emphasises that the purpose of the project is to encourage and support other professionals treating autistic children — not to take over from them.

The McKenzie Trust has granted $9OOO for the research project, and Professor Ney is soon to hire a research worker. A representative sample of Christchurch’s autistic children will be given biochemical and neurophysiological tests, and those who might benefit from them will be taken into hospital for a short time for treatment with the new drug, fenfluramine, which was first developed as an appetite suppressant. One concern of Professor Ney’s is that there are no places properly developed for autistic children. The School for the Deaf takes them, and treats them very kindly, Professor Ney says, but it is not entirely appropriate. They really need to be surrounded by speech and language. Templeton Hospital takes them too, but they really need to be surrounded by normal children.

He has known of ordinary schools elsewhere which have special classes for autistic children, which means they are surrounded by and interacting with other children. Some such schools pick out their brightest and most patient children to spend time in class with the autistic ones.

“As much as possible they should live with their parents,” Professor Ney says, “but it is very difficult for the parents and they need

relief. When they get desperate we have emergency admissions to Ward 24 — the child and family psychiatric unit at Christchurch Hospital.”

He would also like to see a team of people in the community who could go into homes and relieve the parents. Contact is developing such a roster.

Autism is a complete enigma, but Professor Ney is optimistic that it will eventually be understood. And when it is, that knowledge may open the door to much more.

“I have a feeling,” he says, “that if we understood autism better it might give us a clue to understanding a lot of other mental illnesses.”