Viewpoint

Should autism diagnosis be prevented in early development?

Article by Iciar Iturmendi Sabater

Graphic design by Amy Assabgui

Autism 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 (iBASIS-VIPP). 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 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 iBASIS-VIPP 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 iBASIS-VIPP 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 ‘cure’ or prevention of autism when the iBASIS-VIPP intervention actually changes expectations and behaviours in the social context of the child, but not in the child at risk of autism.

Moving beyond medical accounts of autism

This iBASIS-VIPP approach attempts to battle medical accounts of autism by considering the ‘double empathy problem’ of autism. Medical explanations characterise autism by individual’s deficits in the capacity to understand the mental states and intentions of others. This psychological ability is known as theory of mind. However, more sociologically-oriented researchers and autistic individuals themselves have emphasized that it is not only autistic individuals who struggle to understand their non-autistic counterparts, but also non-autistic persons who have trouble interpreting the intentions of autistic individuals. This is known as the double empathy problem, which proposes that the social and communication difficulties that define autism in medical diagnostic manuals like the International Classification of Diseases (ICD) or Diagnostic and Statistical Manual of Mental Disorders (DSM) are not within the autistic individual, but rather the result of interactions between two or more people who struggle to understand each other’s states of mind.⁴

Dr. Whitehouse released a Twitter statement7 addressing the debate his paper had given rise to, insisting:

“Autism can’t be prevented, this is not an aim the study authors believe in. The babies remain neurodivergent, but they are not showing the same degree of developmental barriers that lead them to meet ‘deficit-focused’ DSM-5 diagnostic criteria of autism”.

What Dr. Whitehouse means is that the findings of his research seem to show that infants whose caregivers are helped to better understand their interactional needs, grow in such a way that they are less likely to meet the deficit-focused medical definition of autism, which locates the social and communication problems within the autistic individual. Interventions such as the iBASIS-VIPP may in fact importantly shift the focus of autistic social and communication difficulties from the individual onto the social context, and thus make communities, not individuals, responsible for their remediation.

Autistic individuals will remain autistic, but their autism may not result to be an impairment in their daily lives if their environment is understanding of the way they socially interact differently from others. Under this paradigm, autistic individuals may thrive as their differences become valuable sources of diversity in our communities. As Durkheim (1895) put it, deviance in society challenges standard norms and promotes social change.

References

  1. Hof MV, Tisseur C, Berckelear-Onnes IV, et al. Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019 National Autistic Society [Internet]2020 [cited 2021 Oct 7];25(4):862–73. Available from: https://journals.sagepub.com/doi/full/10.1177/1362361320971107
  2. Milton D, Sims T. How is a sense of well-being and belonging constructed in the accounts of autistic adults? Disability & Society [Internet]. 2016 [cited 2021 Oct 4];31(4):520–34. Available from: https://www.tandfonline.com/doi/abs/10.1080/09687599.2016.1186529
  3. Whitehouse AJO, Varcin KJ, Pillar S, et al. Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism: A Randomized Clinical Trial of Outcomes to Diagnosis. JAMA Pediatr [Internet]. 2021 [cited 2021 Oct 5];e213298–e213298. Available from: https://jamanetwork.com/journals/jamapediatrics/fullarticle/2784066
  4. Milton D. On the ontological status of autism: the ‘double empathy problem.’ Disability & Society [Internet]. 2012 [cited 2021 Oct 4];27(6):883–7. Available from: https://www.tandfonline.com/doi/abs/10.1080/09687599.2012.710008
  5. Sample I. Autism therapy aimed at infants may reduce likelihood of later diagnosis [Internet]. The Guardian. Guardian News and Media; 2021 September 20th [cited 2021 October 17th]. Available from: https://www.theguardian.com/society/2021/sep/20/autism-therapy-infants-study-social-development
  6. Knapton S. ‘Coaching’ parents found to reduce autism diagnosis by two-thirds [Internet]. The Telegraph. Telegraph Media Group; 2021 September 20th [cited 2021 October 17th]. Available from: https://www.telegraph.co.uk/news/2021/09/20/two-thirds-autism-cases-could-prevented-baby-video-intervention/
  7. Whitehouse, A. Comment on JAMA Pediatrics paper: https://twitter.com/AJOWhitehouse/status/1441709985763713031 2021 September 25th [cited 2021 October 18th[Tweet]. Available from: @AJOWhitehouse