The study, funded by autism research charity Autistica, will explore the psychological impact of stigma on the carers of autistic children and how this affects their ability to care for their child. With support from the charity Autism Bedfordshire and Luton Borough Council, the study will develop and evaluate the first ever ‘stigma protection intervention’ for autism carers.

This ‘stigma protecting’ intervention will help family caregivers of young children just before, during and/or immediately after diagnosis. The ten week programme includes a combination of group experience sharing and skills-training to improve caregivers’ mental well-being. The course aims to increase parents’ understanding of autism, reduce their levels of self-blame and social isolation, and increase their self-esteem and resilience.

The University’s Principal Lecturer in Public Health Dr Chris Papadopoulos, who is leading the project, said: “Self-stigma can be extremely damaging to a carer’s wellbeing. It can cause reduced self-esteem and lead to carers feeling that they are to blame for the situation they are in.

“This can lead to carers hiding their feelings, withdrawing from social situations and isolating themselves, which ultimately can have a negative effect on the person they are caring for.

 “New carers who have recently received a diagnosis of autism are particularly vulnerable to self- stigma, especially if they have never encountered autism on a personal level before.”

Jo Worgan, a parent who has experienced stigma directed towards herself and her young son with autism, is supportive of the project.

“I sometimes feel judged, stereotyped and isolated due to my little boy’s behaviour. I’ve been told that autism is just an excuse for naughty children. One incident on a bus greatly upset and to some extent traumatised me. Afterwards I really struggled taking my little boy out again,” said Jo.

“The idea of a group-based intervention for caregivers I feel is a wonderful and much needed resource.”

Chief Executive of Autistica Jon Spiers, said: “Research shows that parents of autistic children experience increased stress and feelings of isolation, and sadly other people’s reactions can often make this worse, affecting the whole family.

“We need to know the best ways to support parents to care for their child so that everyone affected by autism can live fulfilling, happy lives. We’re hugely excited to be funding this unique project at the University of Bedfordshire, and if it proves successful, we will push for the programme to be rolled out to families across the UK.”

Autistica both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions. All the research that Autistica carries out is guided by families, to ensure that it makes a real difference to the lives of those living with autism. 

Since being founded in 2004, Autistica has raised over £9 million in support of autism research to build longer, healthier, happier lives for those affected by autism.