This page is all about a new, registered multi-site clinical trial. We are going to be working with parents of children with autism to help them understand their children, and hopefully support them better. The project is focused on a range of behaviours often observed in autistic children that are currently not well understood or supported. You can see the official trial website here.
Why are we doing this project?
Restricted and Repetitive Behaviours (RRB) are one of the two main characteristics that are required to make a diagnosis of Autism Spectrum Disorder (ASD, hereafter just “autism”). This clinical category can include
- specific, repetitive ways of moving the body such as, hand-flapping or complex body movements
- strong preference for specific routines
- having highly focused interests
- becoming easily distressed as a result of everyday sensory experiences
Lots of RRBs play a positive role in the lives of autistic children, helping them regulate and manage their environment, or giving them pleasure and skills. We don’t want to take this important positive role away. However, other RRBs can present more of a challenge, both reflecting stress on the part of the child and causing stress for their family. Examples might be when RRB take up a large majority of the child’s time, limit their opportunities to spend time with other people, make it difficult for them to engage in everyday activities or have a negative impact on learning. In some cases RRBs can include self-injury, and / or result in enormous distress if they are ever interurpted – including interruptions that happen by mistake.
After receiving a diagnosis of autism, families can feel uncertain and it may sometimes seem like there is very limited support available. Even when support is available, these programmes often focus primarily on social communication difficulties and rarely offer guidance on how to respond to RRB.
The Managing Repetitive Behaviours (MRB) parent group is designed to address this gap in services provision. It is an intervention programme that focuses on helping families better understand RRB and deal with them more positively. In order to be confident that the MRB parent group is effective, we are carrying out a clinical research trial to investigate the potential benefits. This is a really exciting opportunity and could potentially help improve the well-being of many children with autism and their families.
Autism community input
This intervention was developed with a lot of input from parents of children with autism, as well as expert clinicians. A pilot study included a qualitative aspect to explore parents’ experiences of the groups – you can read about it here. The approach is founded on a large literature exploring autistic people’s experiences of RRBs, anxiety and related issues. Now we have parents of autistic children on the trial steering committee and we hope to recruit an autistic parent to join that committee too.
Funder information
This study is funded by the NIHR Health Technology Assessment Programme (ref 16/111/95). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. The official trial website is available here.
Who is involved?
Sue Fletcher-Watson
Saoirse Heron
Vicki Grahame
Leila Mackie
Outputs
Our trial is registered here on the ISRCTN (International Standard Randomised Controlled Trial Number) Registry.
FAQ
Is the aim of this intervention to get rid of repetitive behaviours?
No. The aim of this project is not to get rid of restrictive and repetitive behaviours (RRB) but rather to increase parents’ understanding and provide strategies to help approach them in a more positive and helpful way.
Although RRB can sometimes cause stress for families and limit the child’s ability to engage in other activities, they can also help autistic people cope with everyday life, reduce anxiety, meet their sensory needs and act as a source of enjoyment. Therefore, the MRB parenting group is not aiming to manage or get rid of these behaviours but rather to support families in managing their response to them.
Where does the study take place?
At the start of the study, appointments will take place at your home and at the Kennedy Tower, Royal Edinburgh Hospital. To see a short video of how to get there, please click here
To see a video of our lab and the space you’ll be visiting if you participate, please click here
For the parent groups, these will take place in a range of places locally – like church halls or schools. We will work hard to make sure parents are enrolled in a group which they can get to.
If I join the study, will I definitely get to take part in the MRB parent group?
The MRB parent group is a new course that we think will be really beneficial to children with autism and their families. However, in order to be certain, we need to compare it to services that are currently available. The way we do this is by randomly assigning families one of two groups; the MRB group or a National Autistic Society psychoeducation group.
Both groups are specifically designed for parents of children with autism, and both of them will help you understand your child better. One is specific to MRB, but unproven. The other is more general, and more established.
The decision as to what group you will be attending will be made by a computer and will be completely random. Therefore, although we cannot guarantee that you will be assigned to the MRB group, we can assure you that everyone has the same chance of being assigned to the MRB group.
Does my child need an official diagnosis to take part?
Yes. In order to be eligible for this study your child must have a formal diagnosis of Autism Spectrum Disorder from a qualified clinician.
In fact, to begin with, we will be recruiting families by asking their doctor or therapist to send them a letter about our study.
Children also need to be aged over 3 years old, and under 8 years old at the start of the study.
Will I get any compensation for taking part?
You do not get financial compensation for participating in this research study. However, we will cover any travel expenses incurred when attending meetings with the research team. You will have to cover your own costs for travelling to and from the parent groups.
Where can I find out more?
If you would like some additional information about the Managing Repetitive Behaviours (MRB) trial you can contact us via email:
Saoirse Heron (Research Assistant) Saoirse.Heron@ed.ac.uk
Dr Sue Fletcher-Watson (Edinburgh Research Lead) sue.fletcher-watson@ed.ac.uk
If you have any further questions about the project please contact sue.fletcher-watson@ed.ac.uk