“It’s very bleak and we’ve just lifted the lid”
The abuse that autistic people have experienced at the hands of someone they know and the difficulties they face in trying to access support, have been unveiled in a new study.
The findings suggest many frontline professionals are not adequately trained in working with autistic people who have suffered some form of victimisation or abuse, whether it’s family, friends, colleagues or professionals, resulting in poor mental health.
Psychology researchers at the University of Sunderland carried out the study, the first of its kind in England, exploring more than 100 autistic adults’ experiences of Interpersonal Violence and Victimisation (IPV) – violence and abuse (emotional, physical, sexual and financial exploitation) within personal relationships – focusing on how it impacts on their identity, and their experiences of seeking help and support.
One factor explaining the high prevalence of IPV among autistic people is stigma. Autistic people are stigmatised at both a group level, due to negative perceptions of autism, and at the individual level for failing to meet normal expectations.
The report’s key findings found that victimisation was viewed as a ‘normal’ part of life and had come to be expected. Autistic people were treated as ‘other’ throughout their lives regardless of whether they were formally diagnosed as autistic.
The trauma of victimisation led to the development of ‘masking’ (feeling the need to suppress or hide aspects of their identity) within relationships, which often led to exhaustion and burnout.
The majority of the participants first experienced IPV in childhood. The most common perpetrators were friends or family members, followed by colleagues and partners.
Dr Amy Pearson, Senior Lecturer in Psychology, and the research team interviewed 102 autistic adults, aged 19 to 73, and asked them questions about their experiences of victimisation, including how it made them feel, how it affected their relationships, whether they had sought support, the barriers and facilitators to recovery that they faced, and recommendations for improving services.
“Autistic people experience IPV at an alarming rate, including repeated instances,” says Dr Pearson. “It’s very bleak and we’ve just lifted the lid, more research needs to be done at a national level. It’s essential that we understand the impact of IPV within the autistic population, and how to support autistic adults who have been victimised by familiar others.”
Other findings highlighted that support is scarce, and the limited support available is fraught with structural barriers, including a lack of understanding from professionals.
Dr Pearson says: “The study highlighted the difficulties many autistic people face in trying to access support after experiencing victimisation.
“They suggest that many frontline professionals, from police to therapists, are not adequately trained in working with autistic people.
“In order to make sense of their experiences, it was important that autistic people had access to the right language and concepts to put names to what had happened to them.
“We asked respondents what their ideal form of support would look like, and what kind of changes they might like to see. Many people found it difficult to imagine a world where good support was easily accessible due to the presence of structural inequality and said that we need to re-think how we consider and treat neurodivergent and disabled people.”
The study also found that compassionate and supportive relationships were instrumental in recovery.
Participants outlined the importance of autistic spaces, which included community groups or spaces run by autistic professionals. They emphasised how such spaces reduced a need for ‘masking’, and provided somewhere where they felt free from judgement.
Kieran Rose, The Autistic Advocate, a Durham-based international speaker, consultant and advocate for Autistic and Neurodivergent people, who was a partner in this research, commented: “The common role of victimisation in the lives of Autistic people and the trauma that comes with those experiences has long been either ignored, misconceptualised or victim-blamed as somehow being the result of being a naive group people whom others can’t help but take advantage of.
We need a new narrative that highlights the trauma Autistic people experience through victimisation, but which also shines a spotlight on the role of perpetrators, rather than what the victims should be doing to change.
It is our hope that this paper contributes to a shift towards this ideology and provides support for Autistic people in their recovery from being victims.”
In light of the report findings, the team have made several recommendations designed to guide better service provision in future.
These findings have been presented at the International Society for Autism Research (INSAR) which attracts Leading autism researchers, clinicians, and advocates from around the world to gather to share latest findings and discoveries. Dr Pearson was presented with an Autistic Researcher Awards, created to help support autistic researchers attend and present their research at the INSAR Annual Meeting.
The recommendations include:
- Up-to-date knowledge about autism, and working with autistic people. Being aware of how neurodivergence may impact on emotional processing, including how a distress response may differ.
- Flexible, compassionate approach to communication, and a willingness to work in different ways.
- Awareness of sensory needs, and the creation of a sensory-friendly space. Examples provided here were therapeutic spaces with soft blankets and dimmable lighting, being able to wear ear defenders, and items available to stim/fidget as necessary
The study: “I felt like I deserved it because I was Autistic”: Understanding the Impact of Interpersonal Victimisation in the Lives of Autistic People, was conducted by Dr Amy Pearson and Dr Jon Rees, from the University of Sunderland’s School of Psychology, and Kieran Rose of Durham-based The Autistic Advocate and will be published in the journal Autism: International journal of Theory and Practice.
The associated report can be read here: https://osf.io/preprints/5y8jw/