Being autistic, for me and the 700,000 other autistic people in the UK, often means spending a lot of time inhabiting a world that doesn’t work well for you. This is why it’s vital that the needs and preferences of autistic people are better understood. A trial of a therapy whose findings were published this week attempts to address this issue by trying to ensure the needs of toddlers who may be autistic are recognised.
On one hand, the results are exciting, but they are also complex. Complexity is always hard to communicate. The international research study, led by Prof Andrew Whitehouse at the University of Western Australia in Perth, is technically well designed. It partly replicates a previous trial, and has promising results. Of its two main findings, one is exciting for child development. The second is thornier in how it relates to autism diagnoses.
The therapy used in the trial was an adapted version of one used among children who are not autistic. It focuses on working with parents to understand how a child prefers to play, and supports them to adapt their own behaviour to match their toddler’s natural way of interacting. Play is one of the fundamental building blocks of how children begin to learn how to interact with people and the world around them.
From speaking to autistic people and families, we know that developing communication and language skills alongside finding ways to ensure families feel able to support autistic people are top priorities for autism research. Social communication skills make a huge difference in all our lives. They improve our chances of being able to explain our needs, build stronger relationships and find employment: all things that autistic people can find challenging.
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. It is worth noting that the numbers leading to this effect are quite small, but significant nonetheless.
That raises questions that should give us pause. The main concern for us in the UK is that support only follows diagnosis. 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.
We’re working to fund research to create a system where support is based on needs and not on diagnosis, but we’re not there yet. This study itself shows that early, timely and sensitively designed support makes a difference, so what impact could the delay of support have in the long term?
We also have to ask what else a child may miss out on if they go on to be diagnosed with autism at a later date. For many autistic people, autism is part of their identity. As it stands under the current system, delaying a diagnosis could mean they miss out on a level of peer support and understanding that they could otherwise benefit from.
Medical research studies such as this, for all their methodological rigour, do rub uncomfortably against the experience of being autistic. Autism is not a “preventable” condition that we can treat like other areas of medical research. As with many studies, the research paper itself can, and frequently does, use terminology that can appear insensitive and be open to misunderstanding or misinterpretation.
Combined with the need to for simplicity, this can lead to headlines that spread unnecessary fear and anxiety about the goals and impact of this work. It’s easy to see how, without nuanced discussion and in the absence of reasoned debate, the positive elements of the study could be overshadowed by the more problematic parts. It’s important we see both the good and the bad and that those commenting on science understand that any inaccuracies actively harm autistic people and serve as barriers to progress.
The inequalities autistic people face are unacceptable: reduced life expectancy, significantly higher rates of mental health problems and exclusion from work, to name just three. All are faced with very little support, unhelpful attitudes and frequently inaccessible public spaces. It’s clear that we need research that directly improves lives.
That means, despite its complexity, we can’t shy away from the kind of research that throws up challenging conclusions. It is only by questioning the status quo that we can find what works and what doesn’t, what’s appropriate and what’s not, what’s right and what needs more study. Talking about that research with humility, empathy and sensitivity will help us to ensure that the many autistic people in the UK and elsewhere inhabit a world that works as well for them as it does for neurotypical people.
Dr James Cusack is chief executive of Autistica, a British autism research charity