Survey reveals “systemic bias” of professionals and parental blame linked to family profiling of autistic children with Pathological Demand Avoidance

with Alice Running and Danielle Jata-Hall

Research of more than a thousand families of autistic children who also have Pathological Demand Avoidance profiles (PDA), has revealed what the authors say is systemic bias from health and support services, where decision-making is influenced by family profile rather than the needs of the child.

Alice Running and Danielle Jata-Hall, who compiled the report, say parents of autistic children have reported widespread use of blame, gaslighting and safeguarding investigations by professionals when attempting to advocate for their children. They found that neurodivergent, lone mothers appear to be most susceptible to parental blame from supporting professionals.

Alice and Danielle, who are also parents of neurodivergent children, surveyed 1016 families of autistic children. Alice has written for us about their research…

Unfair profiling for harm and blaming parents of children with Pathological Demand Avoidance are damaging lives and causing unnecessary trauma. By Alice Running

We know that parent-carers are often “blamed” for their disabled children’s presentations, particularly when children have hidden disabilities such as autism. Research has already been undertaken on this and parent-carer support forums are awash with accounts of parent-carers being disbelieved (or worse) by professionals that should be offering support.

For parent-carers of children with a PDA (Pathological Demand Avoidance) profile of autism, the worry of being told that they are “imagining” their child’s difficulties, or that their child’s difficulties are a “home problem”, is ever-present. But what does this really mean for PDA children and their families? What are parent-carers being accused of, and how many families have been subjected to blame? What effect does being blamed for your child’s disability have on family life, and are some parent-carers targeted more than others?

“Parent blaming is destabilising … it makes you a worse parent … the harm it does is long-term … it has ruined my relationship with my child.”

Danielle Jata-Hall and I conducted a survey (April 2022) to try to understand more about the impact of parental blame on families with autistic-PDA children. Our survey received over a thousand responses in only a few days, with 87.8% of respondents stating they had felt blamed for some aspect of their autistic-PDA child’s presentation or “lack of progress”. With such a phenomenal response, we were gifted with a large amount of data. Parent-carers shared their stories with us, in great detail, and the resulting report is a powerful collection of voices.

Professionals’ doubt casts blame on parents

The severity of blame placed upon parent-carers (by professionals) ranged from comments made during informal school-based conversations, to formal safeguarding procedures being instigated –

“The teacher said it’s a home problem … the SENCO accused my child of attention seeking.”

“Apparently, I medicalise my children. [They] separated me from my eldest and put my youngest in care … I’m being criminally prosecuted for alleged wilful neglect”.

We were struck by how the same phrases of blame were used by professionals across the UK (and the world). Parent-carers are being told by professionals that they do not observe the same disability presentations as reported by parents and/or that some aspect of their parenting is causing their child’s autistic-PDA presentation.

52.7% of parent-carers reported professionals raising concerns about the mental health of the parent-carer, as an explanation for their children’s disability presentation.

With such widespread use of parental blame by professionals, this cannot be a problem located within individual parents. Parental blame appears to be a systematic way of dealing with parents seeking support. Our report discusses the function of parent-carer blame in detail. To summarise, parental blame places a barrier between a disabled child and their right to accessible education and support services. In situations where parent-carers are blamed for their autistic-PDA child’s presentation, it is the child that ultimately suffers.

Uneven treatment by practitioners

One of the predominant motivating factors for me in conducting this research, was to evaluate whether all families are blamed equally by professionals – is parent-carer blame an unpleasant “part of the process” of acquiring assessment and support for autistic-PDA children, or are there additional factors involved? Are there particular family types that are more susceptible to parent-carer blame?

Parent-carer respondents themselves identified a feeling that they had received less, or no blame, due to their wealth, marital and professional status –

 “I am certain that because we’re married, heterosexual, well-educated, white, and comfortably off that we get full respect from professionals that work with us.”

This raises the question as to whether the disability need of autistic-PDA children is assessed on need alone or is affected by professional judgements of the family profile.

When we focused specifically on the respondent families who had been subjected to formal safeguarding procedures (on account of their children’s disability presentation), we found that families headed by a lone mother made up 57.66% of this cohort. Further, we found that families headed by a neurodivergent parent made up a staggering 76.57% of respondent families subjected to safeguarding interventions. Are professionals involved with autistic families relying on outdated stereotypes of both neurodivergence and competency of lone mothers to inform their practice and decision-making?

Job-based protective factors to parent-blame, unless you’re also neurodivergent and single

There were some respondents who identified that working within autism-relevant, or high-status professions stopped them from receiving blame from the professionals working with their children. However, in these instances where respondents cited their profession as a protective factor, the respondents were either parenting as part of a couple (married / cohabiting) and/or neurotypical themselves.

What we found to be particularly concerning was how high-status and/or autism-related professions were only categorised as a safeguarding risk (for being too knowledgeable in regards to their child’s disability) when the parent-carer was both a lone mother and neurodivergent (predominantly autistic).

52.5% of our parent-carer respondents identified as being neurodivergent themselves. 58.8% of this neurodivergent cohort reported being in fear of repercussions from professionals working with their children, should they disclose their neurodivergent status. Our research unfortunately found justification for this fear. Respondents identified instances where their own neurodivergent presentation was misidentified as either being a mental health issue, or as being obstructive to the process of helping their child to progress. An autistic parent-carer told us -

 “…apparently, [according to professionals] my black-and-white view of things gets in the way”.

This pattern of treatment towards neurodivergent parent-carers could restrict neurodivergent parents from accessing their own support and reasonable adjustments.

False safeguarding allegations cause massive parental trauma

Where we did find similarity of experience, was in how affected parent-carers and their families are by blame placed upon them. Respondents have shared heart-breaking accounts of the impact upon their own mental health, and wider family well-being, of being blamed for some aspect of their child’s disability. Whether parent-carer respondents had experienced formal safeguarding allegations being made against them, or not, was irrelevant to how ‘traumatised’ parent-carers have felt because of being blamed by professionals when attempting to advocate for their child’s needs.

Our research evidenced that systems of support for autistic-PDA children can create mental health issues for the navigating parent-carer. Parent-carers shared how they initially had no mental health needs but after receiving blame from professionals, began to develop significant mental health conditions.

“I was also assessed for PTSD symptoms and scored highly but I didn’t want that written anywhere for fear of repercussions. My symptoms relate specifically to my treatment by professionals whilst trying to support my child.”

The fear of having serious safeguarding allegations made in relation to their parenting, combined with the damaging effects of all types of parent-carer blame, has led to some parent-carer respondents intentionally withdrawing from support and/or actively avoiding support from relevant professionals –

 “…the lack of support and understanding has forced us to withdraw … I’ve tried not to let it, but it has made me anxious…”

This demonstrates just how unfit for purpose the current system of support for autistic-PDA children is.

We will now be writing to the Secretary of State for Health and Social Care (Rt. Hon. Steve Barclay), and the Minister for Women and Equalities (Rt. Hon. Kemi Badenoch) to read our report – Parental Blame and the PDA Profile of Autism – to undertake all necessary action to rectify the issues raised within.

Parental Blame and the PDA Profile of Autism can be freely downloaded direct here or via any of these links: www.alicerunningwriter.com    www.pdaparenting.com    www.pdasociety.org.uk

Also read:

• Urgent change is needed to stop the institutional culture of parent-carer blaming
• Protecting Parents from False Allegations of Fabricated or Induced Illness (FII)
• Parent-blaming to avoid professional accountability is a human rights issue
• YouGov survey: Teachers blame “parental pressure” for misdiagnosis of SEN
• Children with SEND and the emotional impact on parents
• Stress and parenting: Don’t fall into the guilt trap
• Dying to be seen: Why is it so hard to get help from CAMHS? By Carrie Grant MBE
• 70% of children with Pathological Demand Avoidance missing out on education
• The SENCo – parent relationship: Making it work to benefit the SEND child
• The worrying trend of social care tactics to target SEND ‘problem parents’
• How a parent held her council to account for its SEND failures
• Creating a PDA coping system, after CAMHS’ strategies failed my son
• Why did my PDA son have to fail in five schools before I was listened to?
• The frustration and heartbreak of Pathological Demand Avoidance

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Special Needs Jungle was founded in 2008 as a personal SEN blog by Tania Tirraoro. It is now a multi-author, award-winning site covering special needs, disability, mental health and rare conditions in children & young people birth-25 years.

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