Autism is a severe developmental disorder that affects 1 in 100 children with no treatment that has succeeded in improving these core developmental symptoms over the long-term. Researchers publishing in The Lancet are reporting the long-term results of an intervention with families early in development that may begin to change our expectations.
Prof. Dorothy Bishop, Professor of Developmental Neuropsychology, University of Oxford, said:
“I can see why these researchers are excited. The initial results in their previous report were a bit ambiguous, but these results at follow-up are pretty consistent in showing benefit of this early intervention for autism across a range of measures.
“This study is setting a new standard for research in this area with such a large and well-designed study done. Many parents of autistic children go for what is termed ABA therapy, which is very intensive behavioural treatment that involves one-on-one working with the child for many hours per week – often with the training including trainers other than parents. The ABA therapy is quite controversial for a number of reasons, not least of which is the stress it puts on the family; and there are questions about whether there is good evidence of effectiveness. So this intervention in the PACT study is more family-friendly because it does not require such a huge time commitment
“This study focused on children with core autism in the preschool years, my impression from the paper is that these were quite severe cases, though children with very low ability were not included. I was unclear if they included nonverbal children and it would be worth getting more detail from the authors about the severity of the autism at the start of the study.
“My impression is that this is an intervention that reduces the severity of autistic symptoms, rather than curing autism. Nevertheless, for parents of children with autism, even a modest reduction would be worthwhile. One of the most impressive findings was improvement in repetitive behaviours in the treated children. The authors are rightly cautious about interpreting this, because it was based on parental report and parents could not be blind to their child’s treatment status (with those who had participated in PACT possibly being biased to give more glowing evaluations). But insofar as we can trust the ratings, this is interesting because it suggests some generalisation from the behaviours that were the focus of intervention (i.e. social interaction) to other behaviours.
“One other question I had was whether the age at start of the study was predictive of outcome: they enrolled children from 2 yr to just under 5 yr, which is a pretty big range. There are various reasons why one might expect better outcomes for children where the intervention started earlier.”
Dr Max Davie, Assistant Officer for Health Promotion for the Royal College of Paediatrics and Child Health, said:
“This is a very good, careful study, of which the findings suggest that early intervention can make a long term difference in autism, which is a hugely cheering message for families. It means that up until early school years, a modest improvement in outcomes for children is possible.
“It’s hard to generalise what a reduction in core symptoms means in the real world, but, before an intervention, children are probably finding certain things easier rather than being able or unable to do things altogether.
“Comparing this intervention to others currently being used, this one is quite focused and not especially intensive, which makes the positive results all the more pleasing, since this may be taken up by commissioners. This is very encouraging.”
Prof. Uta Frith, Emeritus Professor of Cognitive Development at UCL, said:
“I don’t know of any long term follow-up study of early intervention in autism carried out with such rigorous controls. It is a remarkably positive story, because the intervention itself was neither intensive nor invasive. There were improvements on a range of measures, but the effects were not dramatic and they were very variable across the group. We are still a long way from individualised programmes that might produce lasting behavioural improvements in all autistic children. In the meantime, we can hold on to the finding that improvements over time did occur even in those who only had ‘treatment as usual’.”
Dr James Cusack, Director of Science, Autistica, said:
“This randomised control trial and the follow-up study are of exceptional quality. The standard of treatment trials is often low in autism research and this study sets an important benchmark. We need more trials like this one.
“Parents commonly tell us that they fight for a diagnosis, but when they finally get it, the cupboard is bare, with little information or tailored support available to them. Too often, parents fall victim to the false claims of charlatans who prey on desperate families. These results look promising for the many thousands of parents who want to find early interventions for their children based on solid science.
“The primary outcome measure used (the Autism Diagnostic Observation Schedule) was not designed to be an outcome measure and can be insensitive to change. On the other hand, this insensitivity to change may make the improvements seen in the study even more impressive.
“There is debate within the autism community over whether targeting the core symptoms of autism is the correct thing to do. Many feel we should be directly focussing on wellbeing. However, many of the improvements observed in this study are those that the autism community expressed as priorities in a recent consultation run by Autistica.”
‘Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial’ by Pickles et al. published in The Lancet on Tuesday 25th October.
Prof. Bishop: None received
Dr Davie: “No conflicts of interest”
Prof. Frith: None received
Dr Cusack: “i) I once wrote a grant application with Jonathan Green ii) Autistica have funded Jonathan Green and Tony Charman, previously. iii) Autistica is currently funding Jeremy Parr, Ann Le Couteur and Helen McConnachie iv) Tony Charman and myself have been co-authors on a report previously, and we have been on different advisory groups together. v) Vicky Slonims is on Autistica’s steering group for the James Lind Alliance Priority Setting Partnership.