Page 8 - SEN115 - November/December 2021

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New Autism research sparks controversy
A recent study has evoked headlines in the media, including the Guardian and the BBC. The original research can be found here: https://bit.ly/3lOI5gQ.
The study was reported in the Guardian Newspaper on the 20th September with the headline ‘Autism therapy aimed at infants may reduce likelihood of later diagnosis’, witht byline that the:
‘Study suggests tailored therapy could help some children develop social skills before school age’. The BBC, on the same day, issued a posting on their website with the headline ‘Early baby therapy could reduce autism diagnoses’.
These articles raised a significant amount of concern and comment with regard to the issue of how neurodiverse individuals are treated in society and how best differences can be accommodated within the modern education sector.
Feedback from the news pieces was such that the Guardian amended their article on the 1st October, 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.
Such events highlight the difficulties faced when reporting on highly sensitive issues which have very real impacts on others, who may be unconsciously categorised as ‘different’ by those writing such news reports.
In response to the original publication, The Guardian published an opinion piece by Dr James Cusack, chief executive of Autistica, a British autism research charity. In that piece, he both welcomes the findings of the research, but also sounds a warning about how such information can be used to deny children the ongoing support which they may need, if they are denied a diagnosis.
He notes: ‘What’s exciting about the findings of this study is that the therapy does successfully boost the social development of the children who receive it. That confirms what autistic people have been telling us for a very long time, namely that the best possible way to help autistic people build skills is to create the best possible environment for them and to follow their interests – rather than leaving autistic people feeling they have to hide or “mask” their autistic traits to fit in with a neurotypical world.
What makes this complicated, however, is that social communication skills are one of the main things measured when someone is assessed for an autism diagnosis. The fact that this therapy boosted those skills meant that children scored lower on those parts of autism assessments, which in turn meant they didn’t meet the criteria for an autism diagnosis. In fact, the study shows that this therapy reduced autism diagnosis by two-thirds.
That raises questions that should give us pause. The main concern for us in the UK is that support only follows diagnosis.
■ Help autistic people follow their interests.
Even if the therapy allows autistic people to have a better start in life, the system will need to change to ensure support is there if and when it is needed.’
Following this piece, the lead authors of the original paper wrote a letter response to the Guardian pointing out that there was indeed a paradox in the research and its implications. They were careful to emphasise that the therapy in question was working with parents (not the infant at all) to help their awareness and responsiveness to infant differences in communication.
They conclude their letter by stating ‘Maybe what really needs to happen as a result of this work is an examination of the very concept of clinical diagnosis itself and the way it is made.’
One of our readers has reached out and written an article as a result of this controversy. Her piece can be found on Page 12.
News deadline for next issue: 08/12/21. Email editor@senmagazine.co.uk
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