Research - trauma and parental blame / Using 'double empathy theory' to reduce blame in autism provision.
Challenging (Parent-Carer) Blame in Autism Service Provision. May 2025.
Hello All, and thank you for finding your way here!
For new subscribers: my newsletter is a free, bi-monthly space where I share information useful for challenging blame (towards autistic people and their families) within autism-related service provision. I also share updates relating to my own work output.
Trauma and Parent-Carer Blame
At the beginning of May I delivered a presentation for the PDA Space (2025 conference) around trauma and parent-carer blame - focusing on my own experiences, linking this with academic research and suggesting ways to fight against internalising parent-carer blame. The presentation can still be accessed (payment required) via the PDA Space website.
The academic research I referred to during my presentation is below:
Baker, P., Cooper, V., Tsang, W., Garnett, I., & Blackman, N. (2021). A survey of complex trauma in families who have children and adults who have a learning disability and/or autism. Advances in Mental Health and Intellectual Disabilities, 15(5), 222-239.
This study surveyed families involved with accessing SEN-related services, finding that 10% of participants exhibited indicators of CPTSD, with families reporting that systems of support create additional trauma.
Yakeley, M., Bonger, N., & Villierezz, P. Difficult parent or traumatised parent?.
This article is written for professionals and discusses how traumatised parents can be labelled as ‘difficult’. The article states how parents navigating SEND services have a greater risk of poor mental health and that navigating services leads to an ongoing pattern of accumulated trauma. Authors conclude that guidelines for the treatment of PTSD are not applicable due to the ongoing nature of acquired trauma (ie, navigating services constantly re-traumatises parents).
Rabba, A. S., Smith, J., Hall, G., Alexander, V., Batty, K., Datta, P., ... & Pellicano, E. (2025). ‘I’m sick of being the problem’: Autistic mothers’ experiences of interacting with schools for their autistic children. Autism, 29(4), 1034-1046.
This research provides rich detail and gives space to the voices of autistic mothers and their experiences of trauma while navigating provision for their children.
Parent-Carer Blame and E/PDA Autistic children.
I may be a little ‘late to the party’ with sharing this research:
Nawaz, S., & Speer, S. (2025). What are the experiences and support needs of families of autistic children with Extreme (or ‘Pathological’) Demand Avoidance (E/PDA) behaviours?. Research in Autism Spectrum Disorders, 119, 102515.
This research centres on families with autistic children who have a ‘demand avoidant’ profile, looking at their interactions with service provision. Authors point to how their support needs are not well understood by professionals who use a label-based, ‘typical-autism’ framework.
One of the key themes identified within this research is:
“Judgements that parents are to blame for E/PDA behaviours - Allegations of Fabricated or Induced Illness (FII)”
Authors write: “Parents’ reports suggest that where understanding and acceptance of E/PDA behaviours is lacking, parent blaming (typically of the mother) flourishes. In extreme, but not uncommon cases, parents stated that they were accused of FII, which irrevocably destroyed their trust in professionals and undermined their efforts to safeguard the wellbeing of the whole family.” (p.10)
Reducing parent-carer blame by amending (UK) Children’s Act legislation:
Dr Aiello and Professor Clements continue to advocate for changes to current (UK) Children’s Act law, specifically the need for amendments to better address the needs of disabled children and their families. Read their latest statement below:
Putting the record straight - Cerebra
To briefly summarise: parents, disabled charities etc have expressed significant concern at how approaches to social care for disabled support services may be assessed via a safeguarding lens, leading to the blaming of parents and unnecessary use of child protection procedures.
The Law Commission held a consultation, concluding that “the Children Act 1989 should be amended to better address the needs of disabled children and their families.[2] In particular – its proposal to ‘take disabled children out of the Children Act and devise a new system for them”.
Dr Aiello and Prof. Clements respond to comments made regarding Law Commission proposals.
Using ‘double empathy theory’ to challenge parent-carer blame within autism provision:
I am very proud and excited to share that I have written a chapter inclusion for Damian Milton’s forthcoming Double Empathy Reader (May 2025).
My chapter is titled, Double Empathy and Professional Scrutiny of Autistic Families and is a personal exploration of how a lack of shared understanding between myself (as an autistic mother) and social care professionals contributed to the blaming of me for my children’s normal and rational autistic responses and communication.
I am hopeful that this text will be useful and informative for practitioners working with autistic people. Details below:
The Double Empathy Reader - Pavilion Publishing
“The Double Empathy Reader brings together a substantial collection of work from leading researchers, theorists and practitioners, with first-hand accounts of neurodivergent people, to explore this growing area of study within the neurodiversity movement.
This comprehensive handbook explores Damian Milton’s ‘double empathy problem’. It challenges the traditional view that in exchanges between autistic and non-autistic people, this breakdown was simply the result of autistic people being inherently deficient in empathy. The Double Empathy Reader brings together an important volume of work to explore the research that has developed in that time as well as the many gaps in our understanding that still exist, with the aim to understand the potential of this theory to aid a reframing of autism itself and the radical change this could bring when considering best practice models for supporting autistic people in different settings.”
Many thanks for reading,
Alice X
www.alicerunningautismadvocacy.com
alicerunningadvocacy@gmail.com