Qualitative Studies

This is a collection of completed studies where we are interested in the views of the participants on a variety of topics. For example, what are the attitudes of employers towards employees with autism; or what is it like to grow up as the sibling of an individual with an autism spectrum disorder?

Employer attitudes to autism

This recently-completed study was a response to the career prospects of adults with autism, which are currently very poor. This is the subject of a major National Autistic Society campaign at the moment. It is obvious that employers play an essential role in offering a job. However, employers’ attitudes to people with autism may not always be positive. Autistic people may encounter barriers because of discrimination or misunderstanding from employers.  One way to deal with this situation is to provide better information to employers about autism, such as this information leaflet created by Autism Rights Group Highland.

In order to explore whether employer training might be useful, we investigated attitudes to, and understanding of, people with autism among experienced employers. We received full survey responses from 24 employers all of whom were involved in recruitment (most reported interviewing candidates more than once a month) and had on average 12 years’ experience in that role.

Our employers were easily divided into a group of 12 individuals with good knowledge of autism and 12 with less knowledge. This was defined both by self-reported level of knowledge and also by the quality of the sources of that knowledge (for example, high quality knowledge derives from personal experience or specific training, low quality knowledge derives from the media).

All employers had fairly positive attitudes to people with autism.  This was measured by asking them to agree or disagree with statements such as “Individuals with autism can make a contribution to the workplace“. Further good news came from the finding that nine of the participants had at least one colleague with autism.

Most interestingly, employers who had good knowledge of autism from high quality sources also had the most positive attitudes to autism.  The same pattern was found when we asked employers specifically how likely they would be to employ someone with autism. When we evaluated employers’ feelings about becoming an employer of someone with autism (for example, asking them to rate their agreement with statements like “I would feel confident employing a person with autism.“), again, experience made a difference.  However, in this case, most employers – regardless of existing experience – also welcomed the idea that they might receive specific training to help them support and supervise an autistic employee.

These findings don’t tell us whether good knowledge causes good attitudes, but this logic seems more plausible than the other way around. Certainly these findings will provide some of the justification for a future study, which we hope to get funded, which will create, deliver and evaluate evidence-based autism training for employers. The long-term goal of this research strand is to get more people with autism into employment, in workplaces where their skills are valued and their role is supported appropriately. What the data from this survey tell us is that there is a good reason to focus on the employer, rather than just on the person with autism.

In the meantime, if you want more information about employing someone with autism you might be interested in this information on the NAS website.

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Autism and bilingualism

This project aimed to find out more about the relationship between bilingualism and autism. It was run by four researchers at the University of Edinburgh: Sue Fletcher-Watson, Hugh Rabagliati, Antonella Sorace and Sarah Hampton.
What were the main aims of the project?
Speaking more than one language has been linked with a number of cognitive and social benefits such as advantages in communication skills, perspective taking and flexible thinking. It has also been linked with a slight delay in acquiring language. As yet, there is very little research looking at how these advantages and disadvantages might be relevant to children with autism who grow up in a multilingual household.
This study aimed to gain a better idea of the relationship between autism and growing up in a multilingual environment. Ultimately, we hope the study will be able to provide evidence that can help multilingual families with a child with autism decide whether or not bringing up their child to speak more than one language is the right fit for their particular family.
What did the project involve?
The project involved conducting interviews with multilingual families with a child with autism. The interviews explored the choices the families have faced and what the families feel the influences are on the languages they speak in their household.
In addition, data from a previous study involving both children with autism in monolingual households and children with autism in bilingual households will be re-analysed. The data includes measures of language and social development and it is hoped that the re-analysis will help us learn more about the relationship between autism and growing up in a multilingual household.
Where are we now?
We have recently completed our data collection and will be sharing a short report on what we found on this page soon. We’ll also be aiming to publish the work as an academic article and, most importantly, use this as an opportunity to secure some more, longer-term funding for a larger project on the same topic.

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Attitudes to early signs of autism research

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.  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.

The online survey phase is now closed. We are currently analysing data from about 2500 respondents across 11 European countries and hope to publish the results in 2015. In the meantime, we have drafted a short report of the key findings which you can download here.

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

If you think these are issues in which you have an interest, please consider signing up to the blog to receive updates on this work, and other DART projects.

If you have any questions about the project please contact sue.fletcher-watson@ed.ac.uk or read on for more information.

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.

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  include: 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.

Who is funding the project?

The project is 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 will be gathering information from a selection of the 23 nations now involved in COST-ESSEA with the support of some of the 60 scientists involved.

If you have any questions or comments about this project please don’t hesitate to get in touch.

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Taiwan UK Siblings Project

The TUKS project is being led by Joy Tsai, a PhD student at the University of Edinburgh. The project supervisors are Katie Cebula,  Sue Fletcher-Watson and Dr Evelyn McGregor. She explains a little about the project below.

Being an older sibling of a sister with special needs myself, I found I really needed more support to help me to cope with challenging or meaningful things in the family. I didn’t want to upset my parents when they needed to take care of my sister and therefore had to postpone the things they promised me. I had so many questions during my childhood/adolescence, “Why I am the one who needs to compromise?” or “Where are these confused feelings coming from?”

After several years and when I reached adulthood I then realized that this is what we do for family. When I look back at what my family have been through, I wish there had been someone who could have given us siblings more support. If there was more understanding of our feelings, we might be in a stronger position to help, contribute and feel stronger in our ability to cope.

The TUKS project aims to understand the experience of siblings having a brother/sister with autism spectrum disorders (ASD) (including Asperger Syndrome) and how siblings cope with challenges in their life. I am also taking a cross-cultural viewpoint, exploring whether young people in the UK and in Taiwan have different experiences and responses to have a sibling with autism.

For further information please refer to the Information Sheet for Parents _Guardians and Information For Siblings . You can also download a recent poster presented during Innovative Learning week at the University of Edinburgh, which gives an overview of the project.

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