with Sally Russell, Trustee, The PDA Society
Scientific rigour in medicine is, thankfully, the rule rather than the exception. We want our medicines, procedures, and treatments to be based on robust evidence and able to withstand scrutiny. It's the very least we should expect, most certainly when the consequences of getting it wrong could result in avoidable harm.
We should also expect the same standards to be applied in social care and education, particularly in relation to the most vulnerable in our society. So I find myself intrigued and horrified in equal measures whenever I see training being run on 'Fabricated or Induced Illness' (FII) and 'Perplexing Presentations', or articles being published in well-respected journals such as the BMJ about how to identify this type of abuse.
I'd like to offer a clear definition of FII, but the problem is no one really agrees on one, and this is unsurprising considering there's so little evidence to support the FII theory.
In a moment, we'll hear from The PDA Society about some new guidance on FII, but first I'd like to explain why it's necessary, particularly from the perspective of a parent of an undiagnosed child."
What is Fabricated or Induced Illness?
What we can say about Fabricated or Induced Illness is that it shouldn't be confused with Factitious Disorder Imposed on Another (FDIoA), which is an extremely rare diagnosable condition. The general theory that FII tries to encompass, is that there are caregivers, nearly always mothers, who fabricate or exaggerate their child's needs in order to gain something for themselves, but not necessarily with the intent to harm their child.
What FII looks like is entirely dependent on what the self-proclaimed 'experts' have decided they want it to look like. Conveniently, of course, they're not relying on any evidence or scrutiny. As a result, caregivers can find themselves accused of FII if they are, for example,
- too anxious about their child, or not anxious enough,
- if they are involved in online support groups,
- if they try and raise money for their child,
- if they make a complaint,
- if they ask for a second opinion,
- if they disagree with a professional,
- if the professionals don't know what is wrong with the child,
- and many other equally spurious things.
It's easy to see just how convenient the FII theory is for any professional dealing with families who might not always do what they are told. How handy no one's had to prove that a parent making a complaint is a concrete indication that they're a potential child abuser and should be treated according. It's even more convenient that the professional doesn't even require proof that any harm has been done to the child in order to make the accusation. It's good enough that they can say that they think harm might possibly be done in the future.
Poor advice from the RCPCH
It may come as a surprise to hear the Royal College of Paediatrics and Child Health (RCPCH) also decided that evidence wasn't important and that it would be in the public's best interests to publish a 'practical guide for paediatricians' on FII. This guide relied heavily on the work of Danya Glaser and Paul Davis, who invented a list of 'alerting signs' for professionals ensuring any parent who was being "a nuisance" could be easily accused, "without the need for proof of deliberate deception". Even the authors acknowledged that they published and distributed this 'guide' despite no available research into whether the 'alerting signs' and 'proposed interventions' had any validity.
FII accusations harm families
We do, however, have increasing amounts of evidence about the harm that false accusations of FII does to families. Unfortunately, this isn't research collected by organisations to see if using these unsubstantiated theories was damaging families of disabled or unwell children. Instead, it comes from the thousands of families who are desperately reaching out to charities and organisations like SNJ on a daily basis because unfounded accusations are destroying their lives and they are powerless to stop it.
We have heard of parents no longer able to advocate for their child, of children being denied treatment or provisions that they need, of needless child protection proceedings, including removal of their child temporarily and sometimes, permanently. We've heard of accusations resulting in children being held in mental health hospitals, and sometimes, shockingly, resulting in the child's death. This is not a case of 'no smoke without fire'; simply disagreeing with a doctor or making a complaint is apparently enough of an 'alerting sign'. No proof is needed. All the medical records are written by the doctor, so the only version of events will be theirs. And if you try to complain about that, or seek another opinion, it's taken as even more reasons to silence you because you are clearly behaving suspiciously. Terrifying isn't it?
FII pseudoscience, but a glimmer of hope
While many people have tried to fight back against the injustice of FII accusations, local authorities, schools, hospitals and social workers, as well as private companies and even the government and NHS have accepted FII pseudoscience as fact. "Experts" offer lectures around the country in a field they have been allowed to create, unchallenged and without evidence. As a result, parents of disabled or sick children are at risk of being accused of FII in any setting where there is an imbalance of power between the family and the providers.
However, there is a glimmer of real hope on the horizon. The British Association of Social Workers (BASW) has recently published guidance, led by a variety of experts, to ensure social care practitioners understand the facts surrounding FII and Perplexing Presentations to help them make informed decisions. This is welcomed by SNJ and many other charities and organisations who have been supporting families wrongfully accused of FII, including the PDA Society, who help families of children with Pathological Demand Avoidance. The PDA Society has written more about the new guidance that they also contributed to.
We welcome the publication of BASW guidance on FII, by The PDA Society
The new, much-needed, guidance from the British Association of Social Workers (BASW) on Fabricated or Induced Illness (FII), aims to empower social workers to develop person-centred practice and carefully consider when further investigation may or may not be indicated.
FII isn’t a ‘diagnosis’ in and of itself, but may be identified where a set of behaviours lead to a child suffering emotional or physical abuse because of a parent’s intention to deceive. It now also includes people with a ‘misplaced’ concern for their child’s health, which, for example, might lead to requesting many medical investigations or maybe a parental assertion that their child isn’t able to attend school. In addition, it is suggested that a ‘perplexing presentation’ might be a precursor or early indicator of FII. As you have read above, the notion of FII has been controversial, with questions over the role of different professional groups in identifying and investigating such concerns.
PDA and FII
Pathological Demand Avoidance (PDA) is widely, but not universally, recognised as a profile of autism. As it is relatively rare, and the approaches that help are relatively unconventional, PDA could be considered a ‘perplexing presentation’ and it’s likely that only specialists in the field will know enough to be able to fully interpret what they are seeing.
In recent years, the PDA Society has seen increasing numbers of FII investigations among parents of PDA children. We’ve seen a mother banned from ever using the term ‘PDA’ in front of any professional and being told that if she did so she’d be at risk having her child taken into care. Another parent, a social worker herself, was investigated because a doctor, on first meeting her, accused her of possible physical abuse and, if that were found not to be the case, then FII. There was no evidence of either, but the local authority insisted that the allegations remain on record. Too many mothers (and it is mostly mothers) find they are simply not believed by services following a wrongful accusation of FII.
Within our stretched public services, with less time for people and less space for curiosity, clinicians and other professionals may sadly often attribute presentations they can’t explain as being down to ‘defective’ parenting or parents who are ‘overly-anxious’. Similarly, in education, there’s often a widespread perception that school is the best place for all children, and that children would be in school if only their parents were to make it happen.
From our work, we know that this isn’t necessarily the case, and regularly hear of autistic children suffering trauma from the immense stress of trying to cope in a school environment.
What does the new guidance say?
The new guidance from BASW explains in detail the types of concerns that can arise, together with the statistics and status of existing evidence regarding ‘perplexing presentations’. It includes a checklist of questions that may help in determining how a referral may be addressed, and what to do where a child meets the criteria for being considered disabled. It goes on to explore the relational aspects of working with children and families, describing a ‘Transactional Analysis’ approach to working with families.
The guide gives social workers the chance to reflect on the referrals that come to them alleging child mistreatment through parental fabrication. Looking at a family through a strengths-based, problem-solving lens is the best way to uncover the tiny minority of true incidences of FII, while also ensuring dignity and respect for others who may not appear to ‘fit the mould’ and would most benefit from being better understood. It recognises the importance of the safeguarding role by seeking to prioritise the right outcomes for children.
Many autistic individuals, including people with PDA, struggle to be properly heard and understood, so BASW is to be congratulated on their publication of this important guidance.
(Conflict of interest: please note that Sally Russell OBE is Chair of the PDA Society and contributed to the creation of this guidance)
Also read:
- Protecting Parents from False Allegations of Fabricated or Induced Illness (FII)
- What schools need to know to support learners with hypermobility and Ehlers-Danlos syndrome
- Racial discrimination and SEND: Why was I accused of harm?
- Know your child’s rights to social care support
- Does child protection guidance discriminate against disabled children?
- Children’s Social Care Review: Are disabled children ‘someone else’s’ problem?
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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