Parental Blame and the PDA Profile of Autism  

 

Alice Running : Danielle Jata-Hall

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Parents and carers of autistic-PDA children can find themselves blamed for their children's disability presentations by professionals working with their families. Historically, this issue has been self-reported by individually affected families via parent-carer support groups and forums.

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In 2022, a survey was conducted to ascertain the collective views of parent-carers of autistic-PDA children, with a view to understanding:

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* how prevalent professional blame towards parent-carers of autistic-PDA children is,

* emerging patterns regarding susceptibility of parent-carers to being blamed,

* how being blamed for their children's disability presentation feels for parent-carers,

* the impact of blame upon the family unit.

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The subsequent report, 'Parental Blame and the PDA Profile of Autism', presents data from 1016 parent-carer respondents:

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* 87.8% of parent-carer respondents said they had felt blamed for some aspect of their autistic-PDA child's presentation or "lack of progress".

* 111 families (10.93% of respondents) had been subjected to some element of formal safeguarding procedures which cited the parent-carer at fault for the child's autistic presentation.

* Of these 111 families subjected to formal safeguarding procedures, 57.66% were headed by a lone mother and 76.57% were headed by a neurodivergent parent. 68.46% of these families had a child with an accepted (NHS) diagnosis of autism.

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Returned qualitative data demonstrates the devastating impact being exposed to blame can have on parent-carer well-being, family function and access to disability support.

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Research conclusions include:

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* In situations where parent-carers are blamed for their autistic-PDA child's presentation, it is the child that ultimately suffers.

* Systems of support for autistic-PDA children can create mental health issues for the navigating parent-carer.

* Certain types of parent-carers are more susceptible to the most extreme form of parental blame - safeguarding. Survey findings show that safeguarding procedures are most prevalent amongst families headed by either a lone mother and/or neurodivergent parent (s).

* Neurodivergent parents are understandably fearful of disclosing their neurotype to supporting professionals.

* There is a need for more autism / PDA informed professionals.

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