This post was contributed by Dr Emily Jones, a researcher into early markers of autism at the Babylab at Birkbeck and a member of the team which have just launched the Studying Autism and ADHD Risk in Siblings (STAARS) project.
Over 1.4 million people in the UK live with autism or attention-deficit hyperactivity disorder (ADHD). Autism makes it difficult to communicate and interact with other people, and ADHD affects attention and concentration. Autism and ADHD are lifelong disorders that can have a huge impact on people’s lives, affecting their ability to work, live independently or start a family.
Although parents often have concerns about their child from early on, autism isn’t often identified before toddlerhood, and children with ADHD often don’t receive a diagnosis before they reach school age. Recently there was wide-spread media coverage when singer Susan Boyle revealed she had been diagnosed with Asperger’s syndrome, a form of autism, at the age of 52. She spoke candidly about her relief at receiving a diagnosis which enabled her to make sense of the symptoms she had experienced throughout her life and which had caused her difficulties as a child. Although diagnostic services for autism and ADHD have undoubtedly improved since Boyle was a child, families still speak of the struggles they encounter in trying to access help for their child, a process that can take years and put an unbearable strain on family life.
Providing support for learning in early development can make a real difference to children with autism or ADHD, and the earlier a child receives this support, the more effective it is. Delays in accessing services can make families feel that time is running out for their child. But families can only access services after receiving a diagnosis – which means that being finding ways to identify signs of autism or ADHD in babies, rather than waiting for symptoms to develop in toddlerhood, would make a big difference.
Today (Thursday 23 January), my team at the Babylab at Birkbeck, together with similar teams from across Europe, is launching a new study of infants with older siblings with autism or ADHD. For infants with an older sibling with autism or ADHD, the chances of also having one of the conditions may climb to 20%. Starting in the very first months of life, our scientists will use cutting-edge techniques to study brain and behavioral development in infancy and through to toddlerhood. By looking at what is happening in the brains of infants who later receive an autism or ADHD diagnosis we hope to find the earliest signs of these conditions – before the children go on to develop the behaviours which can be very hard to ‘unlearn’.
We are looking for families with a baby (less than six months old) and an older child with autism or ADHD to help us learn more about the early signs of the conditions. Our work is supported by the UK Medical Research Council, the European Union, and major UK charities like Autistica, and our scientific partners are based in Sweden, Holland, Poland, Belgium and the US. It’s the first time that a study of this nature has been conducted on such a large scale, but by joining together, we believe that we can make the scientific advances that will drive change for the lives of individuals with autism and ADHD and their families.
Listen to the latest Birkbeck Voices podcast, which is about the new STAARS study.