Attitudes to “early signs of autism” research

Background

Research on early signs of autism aims at identifying the earliest hints of autism in toddlers, usually with prospective longitudinal studies that closely monitor the development of babies and toddlers over many years. These studies, that usually require large funding to gather data from enough children across enough time-points, provide results that will allow clinicians to diagnose autistic children earlier, thus allowing the child and their family to receive support earlier in the development. However, currently we know very little about what autistic people think of this type of research.

 

Please be aware that this study covers some sensitive issues. Key facts include:

  • Brothers and sisters of children with autism have a higher likelihood of having similar problems.
  • 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
  • We want to ask the opinions of the autism community on whether we should be pursuing this line of research

 

Why did we do this study?

The goal of this project was to gather information from the autism community about their attitude to research exploring early signs of autism in so-called “at-risk” infant populations (generally siblings of autistic children, or children with autistic parents – in these populations the occurrence of autism is higher than in the general population). We hope this information will provide a strong ethical foundation for research in this area and help academics more deeply understand how to meet this community’s expectations, including responsible communication and dissemination of research goals, methods and outcomes.

 

Why do we work with infant populations?

Many children with autism grow up with a range of skills and find a positive place in society. Nevertheless, during young childhood the experience of raising a child with autism can 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.

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 these projects recruit babies with a higher-than usual likelihood of developing autism. These are often babies who already have an older brother or sister with autism, or babies who are born premature.

 

What are some of the issues raised by this kind of research?

Being involved in a study like this is a big commitment for families, as they are asked to come in for a series of appointments from when their child is very young (maybe just after birth) until they are three years old or more. Families may be asked to wait a long time before they receive any information about their child’s personal profile.

The goal of this project is to think about the issues attached to this kind of research. We want to find out how we can make sure that this work serves the needs of the autism community and that the people directly involved are treated fairly and with respect.

 

What did the project involve?

In the first stage, we convened a series of focus groups in three European countries (UK, Portugal and Italy) in order to think about the issues in depth, with a range of stakeholders. We spoke with parents of young children with autism, practitioners who work with children with autism, and autistic adults.

Following this, we used the information gathered during this process to compose an online survey asking people about some of the issues which seem important to the community. These included: thinking about the use of “at-risk” language; asking people what measures are reasonable to include in research (e.g. multiple visits to a research centre, blood tests, brain scans); thinking about how people involved in the research should be provided with information before, during and after the process; considering how the infants involved in the research may feel once they are grown-up.

 

What did we find?

We collected responses from over 2300 respondents across 11 European countries, and we found extremely important results. We found that almost all respondents agreed that early autism research is important, especially regarding early signs of autism and the genetic basis of autism. Respondents pointed out that the sharing of information between participating parents and researchers was essential, and that researchers should take into account the needs and opinions of parents involved in long-running studies.

 

Outputs

You can find an accessible summary of the findings here. The findings have been published in a peer-reviewed journal, and are available at:

 

Who conducted and funded the project?

This study was conducted by Sue Fletcher-Watson (more details on this page). 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). We gathered information from a selection of the 23 nations involved in COST-ESSEA with the support of some of the 60 scientists involved.