September 20, 2021

expert reaction to trial looking at the effect of a pre-emptive intervention in children showing early signs of autism on developmental outcomes

A study, published in JAMA Paediatrics, looked at the effect of a pre-emptive intervention in children showing early signs of autism on developmental outcomes.

This Roundup accompanied an SMC Briefing.

Dr James Cusack, CEO, Autistica, said:

“This study is promising in that it confirms what a lot of autistic people and families have always said: creating an environment that works for autistic people and following their interests is the best possible way to allow autistic people to build skills.

“The study also clearly shows that early support makes a real difference and that government and services need to think differently and more proactively about how we support autistic children. We shouldn’t have to wait for a diagnosis to do that.”

Prof Dr Marie Schaer, Assistant Professor at the Faculty of Psychiatry, University of Geneva and Head of the Outpatient Clinic specializing in autism in Geneva, Switzerland, said:

“This study is of great importance for the field of autism, as the authors provide a very rigorous demonstration that we can offer efficient interventions even before autism can be diagnosed. The authors used an intervention promoting positive parenting using video feedback in children aged 9 to 14 months showing early concerns, and reported that this intervention reduces the onset of symptoms and decrease the probability to be diagnosed with Autism Spectrum Disorder (ASD) at age 3. In the field of autism, we already know that it is very important to intervene as earlier as possible when the diagnosis is identified. This study however represents a paradigm shift that advocates in a very rigorous manner for intervening before the onset of full-blown autism.

“ASD is a neurodevelopmental disorder, often associated with increasingly deviant developmental trajectories as the child grow. The increasing deviance from typical development explains why it is often easier to diagnose autism in children older than 3, when the signs are more prominent. But it also explains why, if we intervene as early as possible when autism is diagnosed, we can most efficiently “narrow the gap” (Klintwall et al., 2015: doi: 10.1177/1362361313510067) that can appear between the skills of a child with autism and the skills that are expected in a typically developing child at this age. The recognition that we should intervene early as early as possible with adapted behavioral interventions (Zwaigenbaum et al., 2015, doi: 10.1542/peds.2014-3667E) currently puts high pressure on clinicians and families to get a diagnosis of autism as early as possible. In their study, the authors provide robust scientific evidence that we should not wait until a autism diagnosis can be made, and that we should intervene even earlier, before all signs are evident.

“The method is based on the principle that parents can be empowered in their ability to stimulate the socio-communicative development of their at risk child. Here, the authors showed that only 10 sessions following a specific protocol relying on video feedback leads to durable changes in modeling the way parents interact with their child to support the development of their social skills in a manner that will reduce the autistic symptomatology. The relatively low intensity of the intervention is a real asset, so that the intervention can easily be scaled at moderate cost. To screen for children eligible for this approach, simple screening questionnaires filled by the primary health care practitioners would be sufficient to identify children at risk who would benefit from this intervention (this is the approach that was used in the study). Given the relatively low amount of sessions, we could also imagine that such type of intervention can be systematically offered to children in groups particularly at risk of developing autism, such as younger siblings of a child on the spectrum, or children diagnosed with specific neurogenetic conditions in their first year of life.”

Tim Nicholls, Head of Policy, Public Affairs and Research Partnerships at the National Autistic Society said: 

“There are some strong technical points in this research, but there will be questions about its general premise.

“There are some challenges within the study, including the small number of children the intervention appears to have been used successfully with, and that it only tracks where there has been a positive, rather than negative, result. Both are acknowledged by the authors. Given these challenges, it is not clear whether the findings would be replicative in another independent study.

“But the main difficulties of this research are a lack of community involvement, not testing for wider harms or negative impacts and that very early intervention will almost inevitably mean using intervention on infants who are not autistic.

“Autism is not a disease and not something that should be cured or lessened, so how this study assessed the impact of intervention on “autism behaviour severity” may cause concern amongst many autistic people and their families. It’s important that any further study into very early intervention doesn’t seek to lessen “severity” – early intervention should be about supporting autistic people with the biggest challenges they face. For effective research to be done in this area in the future, autistic people must be involved in every stage.” 

‘Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism’ by Andrew O.Whitehouse et al. was published in JAMA Pediatrics at 16:00 UK time on Monday 20^th September.

DOI: 10.1001/jamapediatrics.2021.3298

Declared interests

Dr James Cusack: Autistica funded the initial pilot study of this therapy back in 2011, which enabled this larger trial to take place. We are not directly involved in this study and did not fund it.

None others received.