Autism - a glimmer of hope

By John Freeman

| 01 November 2016

There is plenty to be gloomy about at present - everything from unaccompanied children seeking asylum, which itself is just a symptom of huge international problems, to the continuing austerity regime which is now biting harder and more sharply on public services, with everything from libraries closing en masse to schools being unable to balance their books, to police services having to admit they can't meet the demand from victims of crime, to care workers having to limit their time with ‘clients' to just a few minutes.

Part of that gloom is caused by pressure on mental health services - at a time, as I have written before, when there is a perfect storm of pressures that will cause or exacerbate mental health problems for children and adults.

But, amidst all the gloom on mental health, there is some really good news about autism, with newly-reported research on an intervention - not a treatment - that has the considerable virtues of being reasonably cheap, effective, and a great example of early intervention. And since it also plays into one of my obsessions, parent education, I'm especially excited.

Essentially, the Pre-school Autism Communication Trial, PACT (everything has to have its acronym these days…) trained parents to communicate with their children. That's it, no drugs, no medical intervention, just intensive training for parents on how best to communicate. The trial involved 152 children aged between two and four - the age at which autism typically starts to show - with twice-weekly clinics for parents, not children, over six months - so around 50 clinics - with parents, again, not children, being given exercises to practice every day. That might sound a lot - in some ways it is, but compare that to a childhood and lifetime disrupted by autism.

The outcome was, I think, hugely encouraging - six years after the intensive clinics and training, the children were very much improved with significant moderation of the symptoms of severe autism, including unresponsiveness and the inability to speak.

Professor Jonathan Green at the University of Manchester led the study, and he said: "Our findings are encouraging, as they represent an improvement in the core symptoms of autism previously thought very resistant to change. Working with parents to interact with their children in this way can lead to improvements in symptoms over the long term."

There were significant improvements by the end of the first year, but the improvements continued into the longer term.

As a proper controlled trial, there was a comparative control group, and the children in the control group continued to develop further symptoms of autism as expected, while those I the trial improved. The control group showed an increase of 50 per cent to 63 per cent of children assessed as having severe autism over six years, while the treatment group showed a reduction from 55 per cent to 46 per cent. So, not a magic bullet by any means, but a real and significant improvement - if my arithmetic is correct, that means that around 30 children who might have been expected to develop severe autism over that period did not do so.

James Cusack of the charity Autistica said that parents often say that they fight for a diagnosis but that a diagnosis does not lead to effective treatment. "Too often, parents fall victim to the false claims of charlatans who prey on desperate families."

Now, this is all great, and let's hope that the research continues, so that interventions can be refined and made yet more effective - and, vitally, so that the work can be replicated and extended so that the parents of every autistic child do not feel pressured to seek out ‘charlatans'.

And on a wider point - my obsession with parent education - shouldn't and wouldn't every parent and child benefit from basic training in ‘communicating with their children'? There has been consistent coverage over the last few years over the number of children joining school at four or five unable to communicate orally, some not even knowing their name. It seems obvious to me that these parents need help. And of course the parents of ‘children in need' need proactive help as well.

The obvious place for all this is at school, delivered, universally, in a non-threatening way, as almost all school children will become parents. And clearly improved communication between parents and children is a good thing - not just for autism but more generally. I know all the arguments about limited curriculum time, but, truthfully, this would be a better use of time than many of the ‘academic' qualifications - just reflecting personally, there was a lot I did at school, and that my children did at school, that was just going through the hoops and has proved of no use in later life. Introducing parenting education would be a real social good.

And, while I'm on the general subject of parental support, the very best place for non-threatening engagement with parents of young children would, of course, be children's centres - located in communities, and providing universal general support, and an ideal location (and cheaper than medical centres) for specialist clinics of all sort … except, of course, that they are being closed round the country - a false economy based on a complete lack of non-joined-up thinking.

John Freeman CBE is a former director of children's services and is now a freelance consultant

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