Phase 2
What does masking look like for autistic children and young people?
This part of the research project will explore what masking feels and looks like for autistic children and young people. These answers will then be used to co-develop ways to measure masking in children and young people, in order to test the relationship between masking and mental health in the future.
Why is this question important?
In recent years there has been a lot of interest in masking or camouflaging of autism - hiding and/or compensating for autistic characteristics, and its impact on mental health. (NB: the exact language used to talk about this in the research project will be decided with the advisory group). However, most research has focused on adults. We still don't know much about what masking looks like for autistic children and young people. This means it is hard to tell if we are measuring masking, and its impact on mental health, in an accurate way.
If you would like to learn more about masking you can read this article written by Laura. It is aimed at anyone aged 11 years and older.
In order to explore the relationship between masking and mental health in children and young people, we need to develop accurate methods of measuring masking. Most previous methods were developed for adults, and may not reflect autistic children and young people's experiences of masking. We also want to explore how much children and young people are aware of masking, and the ways they communicate about their masking, in order to help families and professionals support autistic children and young people who mask.
How will the question be answered?
The exact methods for this part of the study will be developed with the advisory group, and a group of autistic young people and adults who will be recruited specifically to co-develop the new ways to measure masking. However, the general design will be something like this:
Autistic children and young people will be asked to reflect on their experiences of masking, compared to being authentically themselves. This could be through words, images, movement, or other methods.
Common experiences and ideas from this will be used to develop a framework for what masking looks like for autistic children and young people. The framework might involve statements and pictures, or other approaches.
The co-development group will explore ways to transform the framework into a method of measurement, such as by measuring how strongly people identify with different experiences, or producing questions for people to answer.
The method of measurement will be tested in a small group of autistic and non-autistic children and young people.
What will you do with the results?
If the method of measuring masking is useful, we will share it with other researchers, clinicians and education professionals working with autistic children, and with the families of autistic children and young people. We hope that this measure will be helpful to explore masking in children and understand more about their experiences at an individual and a group level. The measure will be freely available for anyone to use, and we aim for it to be easy to interpret.
In the longer term, my aim is to use this measure to track the impact of masking on autistic people's mental health and wellbeing over time. I would like to measure masking from very early in life up into older adulthood, to see if masking causes mental health problems. If this is the case, we can then find ways to try and reduce the expectation to mask, and hopefully reduce levels of mental health problems for autistic people.