Rise And Rise Of Autism Is A Riddle The Experts Can’t Crack

By any measure, the rise in autism rates in the past 20 years has been astronomical. Pre-1990 estimates put the number at about four or five cases per 10,000 people. But a study published last year in the medical journal the Lancet suggested that the condition now affects one person in every hundred.

Such a huge surge has inevitably led to much speculation about the cause, but there has not been a definitive answer.

Those in the traditionalists’ camp insist that autism is a genetic condition and that the increase in cases is down to the fact that the medical profession has got better at diagnosing it.

But others say that, while that may explain part of the rise, there must be other reasons, given the enormous scale of the increase.

Their argument appeared to be given some weight in 1998, when the Lancet published research linking autism with the triple measles, mumps and rubella (MMR) vaccine.

Although the paper, by Dr Andrew Wakefield, has since been discredited, the effects of his claims are still felt today.

Many parents are still reluctant to have their children vaccinated with MMR, with the result that cases of measles in Scotland are on the increase.

The most recent figures show there were 26 in 2006 compared to just one the year before.

The ongoing uncertainty even led to 28 UK paediatricians and vaccination experts, including Neil McIntosh, a professor of child life and health at Edinburgh University, to sign an open letter warning of “more unnecessary deaths” unless the MMR fears were addressed.

Dr Iain McClure, a consultant child and adolescent psychiatrist based at the Vale of Leven hospital in Alexandria, is a specialist in autism assessment and intervention and subscribes to the view that there is no evidence linking MMR and autism.

He believes that improvements in diagnosis techniques are behind the apparent rise in autism cases.

But that is not to say that he has dismissed the suggestions that environmental factors may also have a part to play, or that he does not believe that continued research is essential to establish whether or not other factors may be at work.

He said: “Autism is on the increase, but there are pretty good reasons why that might be.

“For example, it is probably the case that we are getting better at identifying autism spectrum problems and we are starting to identify the more subtle cases.

“It’s also the case that more and more people are becoming autism aware and are referring cases in, so there is actually an increasing waiting list in Scotland for autism assessments.”

Dr McClure went on: “It’s important that we don’t have a closed mind on this. It’s important for people to keep asking the questions and to keep doing the research.

“Parents are worried about this, and if parents are worried, scientists and clinicians need to pay attention to that worry and not be seen as dismissing it, because then people start to suspect that there is some kind of cover-up.

“The problem up until now is that there hasn’t been adequate evidence about other possible causes of autism and so it’s about waiting until that happens, if it ever happens.”

One of those who have questioned the extent to which environmental factors have contributed to the rise in autism rates is Bill Welsh.

Mr Welsh set up Action Against Autism a decade ago after his grandson was diagnosed with the condition.

He is convinced that there is a link between MMR and autism, although he thinks toxins and pollution in the atmosphere may also be to blame.

The only way to end the uncertainty, he says, is for the government to launch a nationwide investigation which would involve every autistic youngster being tested.

Mr Welsh said: “The explosion of autism diagnosis throughout the developed world continues to throw an uncomfortable spotlight on the traditionalists within the autism community who maintain, against the growing evidence, that the condition is solely genetic in origin.

“There is absolutely no doubt that the MMR vaccine is deeply implicated in what has happened to a sub-set of these children.

“I see no reason to disbelieve the overwhelming and compelling evidence of the parents until the government or the medical establishment introduce a comprehensive and practical test for every autistic.”

Dr McClure insisted he would support any attempts to shed more light on what causes autism.

“Nobody that I’m working with wants to close down research or stop people asking these questions because that would be bad science,” he said.

“The whole point of science is to keep an open mind, but at the same time we have to have a robust scientific basis.”

As chairman of the Scottish Intercollegiate Guidelines Network’s (SIGN) forthcoming guideline on autism spectrum disorder (ASD), he has also spent the past three years examining all the available evidence on screening, assessment and clinical interventions in ASD, as regards children and young people.

The research will lead to the publication in March of guidance for medical practitioners involved in the treatment of autism.

“What we’ve learned is that there isn’t a lot of evidence out there,” Dr McClure said.

“The purpose of the guidance we are publishing is to make sure that clinicians are using the best evidence available and the best interventions are being used for children and young people with autism.”

Dr McClure is also reluctant to talk about ‘treatments’ for autism, insisting that can give false hope to the families of those with the condition.

“Treatments implies it has a cure or it can be cured,” he said. “But the evidence we have at the moment is that there is no evidence.

“It is much better to be realistic with patients and families.

“However, there are interventions that can improve the way the child presents with autism.”

These interventions can take the form of drugs to address the young person’s behaviour, or therapy to improve their communication skills.

However, Dr McClure stressed that doctors were reluctant to take the pharmalogical route unless all other options had been explored.

“Very few mainstream clinicians would be in favour of using medication for autism unless the non-pharmalogical methods had been used first,” he said.

“However, there have been some trials of some medications and some evidence that it might be useful for the short-term treatment of aggression.

“At the same time, though, there is also evidence of drugs that don’t work.”

Dr McClure also stressed that it was important not to lump all autistic youngsters into the one category, pointing out that there are different levels of severity across the whole spectrum.

While there are those who can enjoy a relatively normal and successful life, there are others who are severely debilitated by the condition.

He said: “Some children have autism which is a severe, life-long condition and it is those children who, it would probably be true to say, that not much in the way of significant discoveries have been made to advance their prognosis.

“What people are trying to do is improve the support for people like that and the recognition of their difficulties.

“What we want to do is minimise the stress for these people and their families.”

THE HIDDEN CONDITION

FAMILIES from across the country contacted The Scotsman after the launch of our week-long series looking at the education of children with autism.

Here are three of the comments posted on scotsman.com.

• We have been battling for two years to have our nine-year-old diagnosed with Asperger’s. The school has been spectacularly unhelpful and refuses to believe there is a problem because she is extremely bright and not disruptive in class.

It has only ever referred her for speech and language therapy, even although she has no problems with language development, and she has not yet seen anyone (such as an educational psychologist) who can help her with any of her other problems or make a diagnosis.

• My ten-year-old son has recently been diagnosed as having Asperger’s Syndrome. We have never sought assistance from the state machine in the past. The pace at which society has assisted us has been breath-taking.

We live in the greater Glasgow area. The school told us to seek help. We asked the school for an appointment with the educational psychologist. The educational psychologist would not take an appointment without a referral from the GP. The GP told us it was nothing to do with them. The school phoned the GP.

We managed to get an appointment with the speech therapist. They were unable to produce a report. The state enrolled our son at a speech therapist’s summer club for children with communication skill difficulties.

The above all lasted over three years.

Last September, he was finally assessed by the child psychologist. We are still awaiting a formal, written report. Perhaps I’m being ungracious and they need more time. I wish I could work at that speed when I go into my work.

• I have Asperger’s Syndrome. Our son, has Asperger’s Syndrome and we believe our middle daughter, five, may have the condition as well.

Based on both my own school experiences and an understanding of how our son works, we decided that school would be totally inappropriate.

We therefore decided to home-educate and have not regretted that decision for one minute.

Nothing can possibly be better at developing a child’s understanding of the real world than living in it, which is what home education offers.

All the evidence from research also shows that home educating, which is not about school at home in any way but child- driven learning, beats school on every measure, whether academic, social or building a confident and free-thinking adult.