This project aimed to gather information from the autism community about their attitude to research exploring early signs of autism in so-called “at-risk” infant populations. We hope this information will provide a strong ethical foundation for the field and help academics more deeply understand how to meet this community’s expectations, including responsible communication and dissemination of research goals, methods and outcomes.
We ran focus groups with autistic people, parents of children with autism, and practitioners across education, medicine and social care to understand the key issues of interest. We then used this information to design an online survey. This was translated into 10 languages, as well as English, and circulated in 11 countries across Europe. The survey collected data from about 2500 respondents in a range of stakeholder categories.
You can hear a summary of the main findings from the project in this short podcast, hosted by Laura Crane from the journal Autism.
The main points included:
- People who responded to the survey were largely enthusiastic about the value of early autism research. The different groups who replied to the survey were quite closely aligned.
- They endorsed the importance of understanding the earliest signs of autism. This might be related to the fact that on average children were diagnosed at about 5 years old, but parents had noticed differences many years before
- Survey respondents aren’t keen on the use of terms like “at-risk” to describe infants who are more likely than the general population to get an autism diagnosis. We suggest more neutral terms, such as “higher likelihood” or “increased chance”.
- There weren’t many differences between the countries that we could easily detect. But in places where services were considered to be poor quality, those survey respondents also tended to be less positive about research.
We already know that:
- Brothers and sisters of children with autism have a higher likelihood of having the same condition, or related neurodevelopmental differences.
- The latest data indicate that about 18% (1 in 5) of baby siblings of autistic children will go on to receive an autism diagnosis.
- We don’t know much about the patterns of behaviour in infancy which are linked to later autism diagnosis.
- We also don’t know whether it is helpful to identify any possible problems in infants early
Since autism is present in about 1% of the population, this means we’d need to work with 1000 babies in order to find just ten who turn out to have an autism diagnosis later on. So instead, research projects recruit babies with a higher-than-usual likelihood of being autistic. These are often babies who already have an older brother or sister with autism, or babies who are born premature.
We wanted to ask the opinions of the autism community on whether we should be pursuing this line of research
We’re very aware that research looking at autism in infancy can be controversial. Lots of autistic people fear that efforts may be made to prevent or eliminate autism. This is partly why we did this study.
Nevertheless, we think there are some good arguments to try to understand what autism looks like in the early years. Although many children with autism grow up with a range of skills and find a positive place in society, during young childhood the experience of raising a child with autism can still be very challenging for parents. For example, children with autism may take a long time to learn to talk, and during this stage their struggles to communicate with people around them can lead to expressions of anger and frustration.
One way to support parents and children during this difficult stage is to provide additional support for learning social and communication skills, known as “early intervention”. Early intervention could be applied more effectively if we could identify children with autism at a younger age (for example, about the time children start to learn to talk) and if we had a better understanding of the needs of these very young children. We use research studies to learn about these needs.
The project was part of a series of initiatives driven by the European Co-operation on Science and Technology Action on Enhancing the Scientific Study of Early Autism (COST-ESSEA). Twenty-three nations were involved in COST-ESSEA, encompassing more than 60 scientists.
- This is an open-access pre-print of the main paper reporting on the survey. You can also find it on the journal website at this link, and cite it using these details:
- We also published a separate paper reporting specifically on the data from parents of autistic children: here’s the open access pre-print. The journal version of the paper is available at this link, and you can cite it using these details: