Talking about Autism

Research summary:
Talking about Autism – Autistic Parents’ Views and Experiences of Talking about Autism with their Autistic Children

Thank you for taking part in our research last year. This research summary tells you what we did and what we found.

What was this research about?
In 2019, researchers at CRAE published a survey about how parents talk to their autistic children (under the age of 18 years) about their autism diagnosis. Some of the most insightful responses to this survey were from autistic parents of autistic children, so we launched a new study that specifically sought the views of autistic parents.

What did we find?
We collected 34 autistic parents’ views and experiences of talking about autism with their children (autistic and non-autistic). Results showed that most (94%) parents told their children about their diagnosis. Whilst most (87.5%) parents did not receive support in this regard, around half (53.1%) did not feel the need for this anyway. About two thirds (68.8%) of parents were satisfied with the way the diagnosis was disclosed to their children.

We also identified two key messages from our survey:
(1) The need to be open and honest about the diagnosis
Parents felt that children have the right to know about their diagnosis, emphasising that it is nothing to be ashamed of. Parents spoke about the importance of speaking freely, openly and honestly about autism, as early as possible. Whilst it was felt to be important to emphasise the positive aspects of autism, parents also noted that the negative aspects should not be ignored.

(2) The need for appropriate support
The diagnosis of autism was often framed negatively by the professionals involved in disclosing a diagnosis, and support was felt to be needed in this regard. The important role autistic adults can play as role models for autistic children was noted.

What happens next?
We hope that the knowledge and expertise that autistic parents provided in our research can be helpful for other parents (both autistic and non-autistic) as well as professionals working with autistic children and their parents.

Thank you again for taking part in our research – we really appreciate it!

Lok Man (Tiffany) Lui
(supervised by Dr Laura Crane and with input from Prof Liz Pellicano)

Find out more about our earlier work on this topic:


Participants wanted! Meditation study

We are looking to find out more about the effects of a daily meditation programme in autistic people. Here is some important information about the programme and study: The programme will be delivered through an application on your smartphone, and will take 10 minutes of your time, every day for 2 weeks. The meditation will consist of breathing exercises, guided by the smartphone application. You will be asked to complete sets of tasks and questionnaires at different time points: 

  • Before the meditation programme starts (it will take about 1 hour to fill out questionnaires and complete tasks)
  • Right when the meditation programme ends (it will take about 1 hour to fill out questionnaires and complete tasks), and
  • Four weeks after the meditation programme ends (it will take about 1 hour to fill out questionnaires and complete tasks). 

If you fulfil the criteria and consent to participate, the entire study from start to finish will take around 8 weeks (from the time you consent, to starting the 2 week meditation programme, to filling out the final questionnaires 4 weeks after finishing the programme). You will be able to complete the study from your home. After completing the study, you will receive a 20 pound online shopping voucher as a token of our appreciation. Now that you know a little more about what to expect, please answer the following questions that will determine whether or not you fulfil the criteria to participate in the study. If you do not fulfil the criteria to participate in this study, you will have the opportunity to sign up for the CRAE participant database, to be contacted about other research projects. If you do fulfil the criteria to participate, you will see a message at the end guiding you through the next steps. You can change your mind at any point about your participation in the study, and this questionnaire does not imply any consent to participate.  Please contact us at crae.meditation@ucl.ac.uk if you have any questions.

For a summary of the project, you can watch this video: https://twitter.com/CRAE_IOE/status/1193943540755247104.

For more information and to check whether you can participate, please click the link and answer a few questions:
https://uclioe.eu.qualtrics.com/jfe/form/SV_blpYIRvviRO7F7T

Perceived credibility of autistic witnesses

CRAE’s Laura Crane and colleagues investigated perceptions of autistic people within the criminal justice system.

By showing videos of autistic mock witnesses to a group of mock jurors (simulating a real courtroom setting), they found that the testimonies of autistic witness were judged to be as credible as those of non-autistic witnesses. Importantly, this was only when no information about autism was provided to the mock jurors. When the mock jurors were told the witness was autistic and given information about autism, autistic witnesses were judged to be more credible than non-autistic witnesses. This suggests we need to be careful about how we inform jurors about autism, in case it biases the way they view an autistic witness.

Read more about it here: https://bit.ly/2mdCJ2m


Learning how to read autistic behaviour from interactions between autistic people

In 2018, Jaswal and Akhtar wrote a paper that questioned the assumption that autistic people are socially uninterested. They provided a compelling argument, explaining that this apparent lack of social motivation in autism was not consistent with how autistic people describe themselves, and did not recognise the many other reasons why autistic people may behave in unconventional ways. The paper has attracted comments from more than 30 scholars across many disciplines.

CRAE’s Brett Heasman and Alex Gillespie (The London School of Economics and Political Science – LSE) published their response, suggesting that by examining how autistic people appraise autistic behaviour, it can provide solutions to improving neurotypical-to-autistic interaction.

Read the original study here https://bit.ly/2ZevkOW and Brett’s and Alex’s full response here https://bit.ly/2LLSOI7


Educational needs of children with neurodevelopmental disorders

CRAE’s Maria Ashworth has published a new paper with Jo Van Herwegen and Olympia Palikara on the views of professionals working with children with Williams Syndrome, Down Syndrome or autism.

Their study examined professionals’ knowledge of either Williams Syndrome, Down Syndrome or autism and their views about the type of support children should receive. Although professionals generally had a lot of knowledge about specific neurodevelopmental features and difficulties associated with these features, more complex difficulties were less likely to be recognised. Further, almost half of the professionals said that they had been giving no specific information about the disorder they were working with when they first started. Instead, they had to rely on finding their own information. Because of this, the researchers suggest providing professionals with more in-depth training, including lesser well-known difficulties of a developmental disorder and how these difficulties may affect children in the classroom.

Read more about the study here: https://bit.ly/2YoUkTj


Neurotypical people over-estimate how helpful they are towards autistic people

CRAE’s Brett Heasman has just published a study on how autistic people are perceived by neurotypical people. Brett’s research used a computer game where 255 neurotypical players either believed they were playing with an autistic or non-autistic player. This player was actually an artificial confederate that was programmed to behave the same way across all interactions.

When neurotypical players believed they were playing with an autistic person, they perceived them as more intelligent and useful than when they believed they were playing with a neurotypical person. Moreover, when the neurotypical players believed they were playing with an autistic person they over-estimated how helpful they were compared to their autistic counterpart in completing the game collaboratively.

This research concurs with existing reports that the label of autism has a positive effect on social perception, leading to a higher perception of intelligence. The findings also suggest that people may perceive themselves as more helpful to autistic people than they actually are in their behaviour and actions. These findings help to explain why diagnostic disclosure can still result in negative discrimination; hence why disclosure not always straightforward.

Read the full paper here: https://bit.ly/2ZyPCm5


PARTICIPANTS WANTED! Autistic adults’ experiences of camouflaging

Julia Cook, a PhD student at UCL, is seeking autistic adults of all genders who use camouflaging, masking, or compensatory strategies during social situations to take part in some new research.

Taking part involves:
 •  Completing online questionnaires
 •  You may then be invited to UCL where you would complete a short social interaction, reading task, and interview

If you would like to get involved or would like some more information please email Julia at julia.cook.18@ucl.ac.uk

Please note that all data you provide is kept confidential and will be safely and securely stored in line with GDPR compliance.


Research Passport

What is, presumably, a research passport. Blue cover and background.

Towards empathetic autism research – Developing and evaluating an autism-specific Research Passport: This project aims to develop a Research Passport. This research passport is a tool for improving autistic people’s experiences of taking part in research. It is a way for autistic people and researchers to have a conversation about things like communication preferences and the research environment. To ensure the Research Passport is useful and meets people’s needs, we gather views via surveys and focus groups. We will trial the passport with autistic adults, parents of autistic children and researchers. Importantly, this project also aims to create a series of ‘toolkits’ to share with researchers. This toolkit will include guidelines on inviting participants to your lab and how to facilitate inclusive, autism friendly research.

CRAE lead: Laura Crane with Maria Ashworth and Liz Pellicano

To keep up to date with its progress, please get in touch with Maria by emailing maria.ashworth@ucl.ac.uk.


Key publications:

  • Research Toolkit: The research toolkit is a collection of tips and example documents we have collated to help researchers produce documents to conduct inclusive, accessible autism research by learning from examples of good practice. It includes templates, such as:
    – Information sheets & consent forms
    – Recruitment flyers & posters
    – Directions to find research labs
    – Interview schedules
    – Participation certificates
    – Good practice guidelines
    – Research summaries.
    Find them here: The Research Toolkit