Hello and Happy 2024 to you all! You are receiving this newsletter as you have expressed an interest in either following or supporting my campaign focus - challenging parent-carer blame within autism provision.
I hope these newsletters will be of interest to you and that together we can generate the momentum needed to challenge the current (and entrenched) narratives of blame that many parent-carers face when navigating systems of SEND.
Please feel free to share this resource with any person who may also be interested in ‘Campaigning to Challenge Blame’.
2023 round-up …
In February 2023, myself and Danielle Jata-Hall (www.pdaparenting.com) published a report detailing the results of a large-scale study into parent-carer blame within the PDA parenting community.
The report is available via the PDA Society - Parental Blame and the PDA Profile of Autism | PDA Society Resources
A shorter summary, presenting the key findings is available via my blog - Parental Blame and the PDA Profile of Autism – NEW RESEARCH
The study was received well by the SEND community and the findings received coverage from Special Needs Jungle and Disability News Service:
A summary of the study and its findings are also featured within ‘Your Child is Not Broken’, a Sunday Times Bestseller authored by Heidi Mavir. (Bluebird, May 2023)
In April 2023, Danielle and I were invited to present the study findings to the Cross Party Working Group on Autism at Senedd, Wales. Following which, the Chair - Mark Isherwood MS - felt it necessary to write further to Senedd, highlighting the issues we had brought before him.
In November 2023, Professor Clements and Dr Aiello published a substantial research report - ‘The Prevalence and impact of allegations of Fabricated or Induced Illness (FII)’. The appendices pull together many reports, papers and articles that suggest an increased prevalence of FII allegations, including our study - ‘Parental Blame and the PDA Profile of Autism’ :
‘A 2023 report concerning a survey of 1,1016 parents of children with Pathological Demand Avoidance (PDA) in which over 87% of the respondents reported that they had felt blamed by professionals for some aspect of their child’s presentation or lack of progress, with a number commenting that they had experienced allegations of FII.’ (pg 37, The Prevalence and impact of allegations of Fabricated or Induced Illness (FII))
I have remained in contact with the PDA Society and in November 2023 I was able to speak with many other parent-carers and supportive professionals at a PDA Society discussion event focusing on parent-carer blame and ‘what can be done’ about it. The outcome of which has provided the impetus for further and continued campaigning.
Moving forwards …
Jessica Kingsley Publishers will be publishing my second book, provisionally titled ‘Navigating Blame - A Guide for Parent-Carers of Autistic Children’ and to be released in 2025.
I am continuing to have conversations with the PDA Society and other leading researchers, professionals and academics around the best ways to challenge parent-carer blame, and when I am able to share firm information about future campaigns etc, I will do so via this newsletter and my social media channels:
Alice Running - Autistic Writer and Blogger | Facebook
@AliceRunning1 (X / Twitter)
Mobilising parent-carers and empowering them to speak out in a safe and easy way will be a particular focus as the year progresses and it would be great to work with other advocates on this.
Please do get in touch with ideas or information regarding ‘Campaigning to Challenge Blame’. My email address is alicerunningwriter@gmail.com
Next time …
A round-up of resources, research and reading!
My very best wishes,
Alice X