North Wales MS and Chair of the Cross-Party Autism Group Mark Isherwood highlighted in the Senedd yesterday shocking cases where parents of Autistic children fear losing their children to the care system, because they are being blamed for their child’s disability presentation by professionals working with their family.
In his Short Debate on ‘Parental blame and the Pathological Demand Avoidance (PDA) profile of Autism’, he said a report on this subject published in February, which presented the findings of a survey of more than 1,016 parents and carers of PDA children, revealed that 88% of parents/carers completing the survey said that they had felt blamed for some aspect of their PDA child's presentation.
Mr Isherwood, who, on April 17th, Chaired a meeting of the Cross-Party Autism Group at Bangor University, where the issue was “given long overdue attention”, said the research was born from the personal experiences of the authors, Alice Running and Danielle Jata-Hall, who have both been subjected to misaligned scrutiny and blame by their respective local authorities in respect of their children’s autistic presentations.
They described the PDA profile of Autism as driven by need for autonomous control due to anxiety, manifesting as consistent resistance to everyday demands. Raising concerns about a lack of recognition and understanding of the PDA profile, they said this impacts the support families receive and leads to parents facing safeguarding scrutiny.
He told Members of the Senedd that their experience is not uncommon, “with many families describing their experiences of how they have been blamed for their Autistic children’s presentation or perceived ‘lack of progress’ ”.
“Families with Autistic children fear losing their children to the care system, and the associated stigma around this fear can render sources of help as inaccessible.”
Mr Isherwood said common themes identified from the survey included parents being told by professionals that their parenting or mental health is causing their child’s Autistic presentation.
11% of respondents had been subjected to formal safeguarding procedures, citing the parents at fault for the child’s presentation, and nearly 60% were lone mothers and almost 80% were neurodivergent parents.
He went on to speak of cases in North Wales where parents have been blamed for their child’s Autism.
“A neurodivergent Flintshire Mother shared her own lived experience of parental blame. Raising the importance of training, she highlighted the case of Paula McGowan OBE, who successfully campaigned for mandatory autism training in the NHS in England following failures which led to the death of her son, Oliver.
“My casework also confirms the desperate need for mandatory Neurodiverse training not only for staff in NHS Wales, but also in our Schools and Social Services departments, endorsing both the “Neurodiverse Unmasked” campaign led in Wales by Clare-Anna Mitchell regarding education staff, and research with BASW, the professional association for Social Work and Social Workers, published last year in the British Journal of Social Work.”
He added: “A Wrexham Mum wrote ‘We have a 15 year-old autistic son who is statemented, bright, in mainstream school and has a type of autism called Pathological Demand Avoidance Syndrome which we have educated school/LEA about. However, the very ALN unit staff supposed to be advocating for our Year 11 son are doing the complete opposite’. Their Education Tribunal is next month.
“A neurodivergent Flintshire Mum whose children were taken into care after she was recorded as mentally ill and making up illnesses, despite her children displaying evidenced behaviours consistent with children who have Autism, PDA, ADHD, wrote ‘I can safely say no neurodiverse child or family in Flintshire is safe or exempt from this level of harm being done to our children and us as neurodiverse families, as long as there remains no accountability’.
“Another Flintshire Mum, whose daughter’s diagnosis includes Autism with a PDA profile and ADHD, and who herself has a diagnosis including Autism, ADHD and PTSD, wrote: ‘Flintshire’s culture seems to be that of bullying, victimisation and coverups of serious safeguarding concerns and threats to remove children in order to gag the parents who complain. In my case, I was inappropriately referred by Flintshire County Council for a Fabricated or induced illness assessment’. I am now in fear that my daughter will be removed from my Care. This is not just about individual cases of targeting Neurodiverse individuals’.”
After, Mr Isherwood asked the Deputy Minister to respond to this constituent’s request for a face to face meeting with her and others, to which they could bring the key records for the Minister to see, the Minister replied that she would be happy to come to the Cross-Party Autism Group to meet any of the families.