VIEWPOINT
Should autism diagnoses be prevented early in development? By Iciar Iturmendi Sabater
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utism is characterised by social and communication differences relative to the normative standards of the general population. It is considered a neurodevelopmental disorder since its neurobiological determinants are present very early in development, with the mean age of diagnosis being three and a half years for children who start showing early signs of autism before ten years of age.¹ As autistic* people usually claim their diagnosis as a critical part of their identity since childhood² the question arises: should research efforts aim at preventing or curing this neurodevelopmental condition? This question has sparked debate after the recent publication of a randomised controlled trial in JAMA Pediatrics.³
A positive parenting intervention to decrease autism symptomatology The JAMA Pediatrics study, carried out in Australia, tested the efficacy of a social skills training for caregivers of infants at risk of autism called the iBASIS Video Interaction for Positive Parenting (iBASISVIPP). The researchers hypothesized that the training would decrease autism diagnoses and symptom severity in children by the age of three. A team of specialised therapists (psychologists or speech pathologists) implemented the iBASIS-VIPP training 20 | IMS MAGAZINE FALL 2021 GI & GUT MICROBIOME
among 45 caregivers of infants at risk, while 44 caregivers received the traditional training (a two-hour information workshop on autism which is considered the current best practice on caregiver training). Both interventions had been piloted in previous studies and showed to produce no harm. Throughout the ten home-sessions over five months of iBASISVIPP intervention, specialised therapists guided caregivers in understanding the potential of their infants’ interaction styles while going over previously filmed caregiver-infant interactions. Its main objective was to achieve optimal interaction between infants and caregivers. Dr. Andrew Whitehouse’s research team found that, by three years of age, autism was diagnosed in 21% of infants whose parents did not receive the iBASISVIPP training, compared to only 7% of infants whose caregivers participated in the training. The iBASIS-VIPP positive parenting intervention lowered the odds of infants at risk of autism being diagnosed with the condition at three years of age. The severity of future autistic symptomatology was also significantly smaller among the children whose parents participated in the iBASIS-VIPP training. An important question that this study left unanswered was: might the effectiveness of the iBASIS-VIPP intervention in reducing the odds of autism diagnoses extend beyond childrens’ three years of age? Future research might aim to answer this question by performing a longitudinal study.
Controversy arises: should autism be prevented or ‘cured’? Soon after publication, these findings became a controversial topic among researchers and autistic individuals on Twitter, as different newspapers (e.g.: The Guardian5, The Telegraph6) cited the results of the study as potential evidence that the iBASIS-VIPP can ‘cure’ autism. In fact, The Guardian rectified its wording and now states at the bottom of the publication: “This article was amended on 1 October 2021 to remove a reference to the therapy not being “a cure” for autism, as this term is not appropriate within the context of reporting on autism”. But why is the term ‘cure’ problematic to describe the findings of this investigation and in the context of autism research in general? The aim of the iBASIS-VIPP intervention is not to change the interaction style of the infant at risk of autism to accommodate the ‘normative’ expectations of their caregivers and societal norms. Instead, the intervention seeks to help caregivers adapt to their infant’s communication styles and change their attitudes towards their autistic child. To that extent, the intervention does not aim to prevent or cure autism, but rather to construct a more understanding social environment that welcomes neurodiversity. It is thus problematic to state that the results of this study evidence the possibility of a Graphic design by Amy Assabgui
