A new understanding: how research into autism is evolving
Kirsty Orton didn’t mind whether her baby was autistic or not – she just wanted her 12-month-old to enjoy being with his mummy: to notice her when she came into the room. To meet her eye when she talked to him and to be able to communicate.
“All I wanted to do was be able to connect and bond with Fynn,” she said. “But when your baby looks everywhere else in the room except at you and stays in their own zone, like you’re completely unimportant to them, it’s upsetting in a way that I struggle to put into words.”
Orton reiterates that it wasn’t about not accepting the autism that runs in her family. “I was fine with that,”’ she said. “But Fynn’s lack of communication wasn’t safe for a child and would be even less safe as he grew up: you need to be able to communicate if there’s something you don’t like.”
Orton, who lives in Kent, turned to the internet and discovered the first experimental trial of a targeted social communication therapy programme for babies as young as 10 months old with an increased chance of developing autism.
The pilot therapy – still in its infancy – aims to support and maximise the babies’ communication and brain function by focusing on the one-toone social interaction they receive in their first year with parents or carers. It hopes to change later behaviour too, as the child ages.
Led by Prof Jonathan Green and his colleagues, and based on work funded by the Medical Research Council, the charity Autistica and the national autism team at NHS England, the project claims to improve the developmental trajectory of babies. Autistic children will still have developmental differences but will be more easily social and able to engage.
“This is going to change our concept of what autism is,” said Green, a professor of child and adolescent psychiatry at the University of Manchester. “It will redirect our attention away from an idea of intrinsic social impairments and get us into a deeper level of what autism is really about.”
Autism research has transformed in the last two to three decades. Gone are the offensive and misguided attempts to “cure” the condition – the depersonalised, medicalised approaches that treated autistic people as objects in need of treatment.
Gone too is the discredited and controversial approach of teaching autistic children to hide their autistic identities using behavioural techniques.
Green said: “Treatment, as it was traditionally given, focused on removing autistic behaviour and came to be felt by many autistic people to be an assault on their identity. A focus on genetic ‘cures’ led to concerns that the aim was to remove autism from the
world.”
But despite the evolution of research into autism, there is still so much we don’t understand about the condition that continuing work is crucial.
We don’t understand, for example, how its many genetic and environmental influences give rise to so many different presentations. And importantly, despite the condition’s impact and prevalence, and the fact autistic people do not always respond to conventional treatments for mental health difficulties or may experience unacceptable side effects, there are still no specifically tailored medications.
Research is now striving to address those issues, and many others. But it is doing so by using a participatory approach: engaging with the autistic community and co-designing interventions focused on developing an empathic understanding of the autistic experience. Researchers then take that understanding and use it to devise environmental adjustments to help autistic people flourish.
Green’s therapy aims to modify aspects of the infant’s environment by helping parents understand their child’s communication style and adapt their own responses to it. Families who have taken part in his project talk of vastly improved outcomes for their children, deeper connections and transformed relationships.
He said: “What we’ve shown is that children whose parents have gone through our process are still autistic but are better adapted and happier individuals.
“We have proved that our early interventions, both iBasis and the version for older children, called Pact, change a child’s autistic profile in a way which suggests a whole range of autistic expressions – not making eye contact, repetitive behaviours, not communicating and so on – can often be seen as secondary products of environmental experience rather than necessary parts of the autism itself.
“It’s such a success that I would dearly like to see it proposed as a new model for early-years autism services nationwide.”
Green’s is far from the only project working hard to make a fundamental difference to autistic people’s life experience. Declan Murphy is leading the National Autism Project, the largest autism research network in the world. Funded by the EU and conducted across 14 countries with 48 partners, he hopes to have results as early as May 2025.
Murphy, from King’s College
London, is exploring drugs to modify the brain signals in autistic individuals to, he said, modify the differences between them and neurotypicals. “This is not a cure – we don’t think like that any more,” he said.
What the drugs do is modify sensory processing, for example visual, thereby improving symptoms for issues that can cause many autistic people distress, including sensory sensitivity and irritability.
The exciting thing about Murphy’s research, part funded by the National Institute for Health Research Maudsley Biomedical Research Centre, is that he is using drugs that already have regulatory approval and are commonly used for other conditions, so if his study results are a success, the treatments could be introduced immediately.
Murphy said: “At the moment it looks like 30% to 40% of individuals have a significant brain response to this drug. If that translates into a clinical trial outcome then this could have massive implications for the lives of one-third of all autistic people, reducing pressure on services by the same proportion.”
Dr Grainne McAlonan, a clinical professor of translational neuroscience at the department of forensic and neurodevelopmental sciences and Institute of Psychiatry, Psychology and Neuroscience at King’s College London, has just started investigating a psychedelic compound – psilocybin – found in magic mushrooms.
She is looking at the serotonin pathway, which plays a key role in a range of essential functions such as sensory processing, cognition, mood and sleep. One of the most consistent findings in autism research are differences in the serotonin pathway: more than 25% of autistic people have high blood serotonin levels.
If McAlonan identifies individual differences in the brain serotonin system targeted by psilocybin, the next step will be to ask whether they can establish if there is a biological response to the drug that might be clinically useful. “Ultimately, this research may allow us to provide more personalised choices for those autistic people who want the option of a medication for their difficulties,” she said.
This was an exciting time for autism research, said Matthew Swindells, an evidence, research and evaluation manager at the National Autistic Society.
He points to other research that addresses real-life issues, including the Bridging Project led by the University of Plymouth, which uses virtual reality to reduce the autism employment gap; autism in affinity spaces, led by Queen Mary University London, which explores how young autistic people use social media platforms to engage in their interests; and Audit 50, led by University College London, which focuses on the experiences of older autistic people, an often overlooked population.
Swindells said: “Perhaps, most importantly, researchers have moved away from stigmatising, deficit-based language and approaches. Instead, it has started to focus on the topics that really matter to autistic people. This can be seen with the emergence of more autistic lead researchers, as well as some brilliant examples of participatory approaches within research practice.”
White House national security council spokesperson calling it “an important and welcome step” adding that the Biden administration would work with Congress “to further strengthen this legislation and put it on the strongest possible legal footing”.