Yesterday Voice for Change hosted their second conference on Parental Blame, 18 months after the first one. As Donna Kelso, who runs the group, promised, this was a follow-up conference to look in detail at the new report that landed in in November 2024 around this very important issue.

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DEBBIE HOLLINGSWORTH – ADASS

The first Speaker, Debbie Hollingsworth from ADASS (Association Directors of Adult Social Services,) took us through the report on Parent Blame and FII. ADASS undertook the report to provide an objective and authoritative voice and Debbie is one of the project leads.

This is a brief summary of the report.

ADASS read hundreds of papers which mentioned Parent Blame and narrowed it down to 14 to conduct their research.

It is clear that there is VERY LIMITED EVIDENCE, and the evidence deals almost wholly (91.97%) with white birth mothers. They conducted a survey amongst families which had over 650 responses from which to compile the most recent evidence.

The results of the study show that whilst parent blame is prevalent from a variety of sources, including family and friends, parents can largely shield their children from this harm as it comes from ‘behind’ them. Parental Blame from Institutions and Services, however, being the Gatekeepers of resources, are in ‘front’ of them and there is no shielding themselves or their children from the damage done by parent blame in this instance.

Autistic parents are at a higher risk of Parent Blame than Neurotypical parents. They are three times more likely to be accused of FII (Fabricated or Induced Illness, formerly known as Munchausen’s by Proxy)

Parent Blame leads to huge mistrust in services and prevents families from seeking further help.

The report found that Professionals were rarely held to account for false claims of Parental Blame and FII. Parent knowledge and expertise was routinely dismissed and disregarded, 81% of parents in the survey said they were not believed when seeking support. In many cases their knowledge was used against them.

Unsurprisingly those who had contact with neurodiverse professionals fared better. The report recommends that parents seeking help should be seen as a positive thing by professionals and that there should be partnership going forward. More training for professionals and more accountability around mistakes were also recommendations.

PROFESSOR LUKE CLEMENTS

We then heard from Luke Clements who has worked with the charity Cerebra to produce a report into The Prevalence and Impact of Allegations of Fabricated or Induced Illness.

Luke thanked Donna Kelso for her drive and determination to highlight this subject and explained his 6 years of research. Although Luke spoke of unacknowledged systems failures, and systems generated trauma he did say that there was hope.

Firstly, he talked about how families seeking help for their disabled children from the LA are treated using the same process as those suspected of abuse and neglect. This is from defective national guidance which contradicts Human Rights/Disabled People’s Rights/Discrimination law. However, the government recently accepted the findings of a Government Commissioned report which found that Disabled children’s assessments should be SEPARATE those from those for Abuse and Neglect.

Luke described how rare FII is – 0.4 cases in every 100,000. The problem comes from the Royal College of Paediatricians who did not take into consideration the rareness of the condition in their guidance. They then over-emphasised the prevalence of FII. The Royal College were sent an open letter about this; they have so far refused to amend their guidance but there are things happening behind the scenes…

Luke talked about the trauma resulting from accusations of FII which is life lasting and life changing. He also commented that 50% of allegations followed a complaint from families to the public body who then accused them. The records are always on file which then affects families asking for help going forward.

A positive development is that the British Association of Social Workers have revised their guidance on FII to be much better. Martha’s Law has also prevented serious and life-threatening harms being done to children by not taking parent’s concerns seriously.

EMERITUS PROFESSOR OF SOCIAL WORK ANDY BILSON

Before lunch we heard from Andy Bilson, Emeritus Professor of Social Work, who talked about trends in Parent Blame.

He looked at how Chid Protection wasn’t working – that child protection section 47 investigations had increased by 151% since 2010 but Child protection plans had only increased by 40%. This is actually ¼ million investigations and ¾ of them DO NOT lead to Child Protection Plans. There is a geographical imbalance too, as in the poorest areas, it is 10x more likely that an investigation leads to a Child Protection Plan. Andy asked the question, if we know poorer areas are affected like this, why are we waiting to do anything about it before children get to the stage of a section 47 investigation. We should be looking at other factors, not the parents.

There is very little research to suggest that Child Protection reduces harm. Investigations don’t look at poverty or disability, they look at the terrible, much publicised cases of child deaths and give everyone more of the same. For disabled children, the trend is that Child in Need plans have increased far more compared to no change in non-disabled children. Abuse or neglect is by default seen as the primary need rather than disability when assessing disabled children.

Andy discussed Human Rights violations in social care, such as the right to privacy and non-discrimination. He described that agencies excel at covering their own backs, and the more agencies, the more back covering they do. They are terrified of the risk to reputation and all the while the damage that is being done to parent and child relationships is huge.

Andy talked about the lack of research in FFI/Perplexing presentations. In 2002 the definition was changed from Munchausen’s by Proxy to FII and there were cautionary notes about the lack of evidence but since then the definition has widened substantially. There is now a continuum in the definition from ‘anxiety and exaggeration’ all the way to causing harm and death, and there should be different responses to these very different things – they should not be part of the same pathway.

Andy couldn’t stress enough how poor the evidence base was for FII which had nevertheless become part of the growing culture around Parent Blame.

TANYA ADKIN – AUTISM SPECIALIST AND SOCIAL WORK ASSISTANT

Tanya Adkin was our next Speaker who talked about her MA research on Autistic Mothers and Social Care. Tanya is a Neurodivergent mother herself and focussed in depth on two complex case studies for her research.

Her findings include how Autism is misinterpreted: stereotypes around autistic people contributing to Parental blame. The parents’ mental health was scrutinised; their ability to ‘let their children be normal’; preconceived notions of what disability looks like; minimising the autistic experience; failing to acknowledge the parents’ expertise in their child.

Tanya looked at how lack of resources/funding/skills meant that Social Care was gatekeeping resources, and that starting from the point of parent blame was easier than allocating scarce resources. When Independent professionals were involved, however, outcomes were much different. Tanya explained that often Social Care makes the family fit into what they can offer , and that there is an empathy gap because of this. Institutions create a FEAR-BASED response because of what they lack – their focus on parents creates therefore a self-fulfilling prophecy where parent’s frustrations reflect badly on them, and feed into the pre-conceived notions of the professionals.

Tanya talked about the power imbalance as the Social workers holds all of the power so that even professional people working in the same field are made to feel powerless. Approaches can be intimidating and dismissive of the parents as experts in their own child. There is a sense of manipulation, that this is a kind of game and it’s only ever going to go in one direction. The case studies Tanya produced told of professionals who use their position to steer things in a certain direction and autistic parents might struggle to pick up on this manipulation.

The emotional impact on families is immense. This includes: mistrust and lack of confidences in services; safe spaces like homes and bedrooms violated; erosion of family relationships; tensions in the wider family where the home becomes a place of tension and stress. This then leads to confirmation bias in professionals who watch as families become more fractured. Families are unwilling to seek help in the future, there is a profound lack of trust in the system ‘Don’t poke the social care bear!’

There are lots of remedies to this if Institutions were to consider them, such as looking at the barriers in society that cause the problems, rather than seeing the person themselves as needing to be fixed. Interestingly Tanya talked about using masking as a survival strategy. It can take a toll but it can protect the autistic parent. Some of these strategies are seen in one of the photographs provided.

No one wants to admit they don’t know, but Tanya urges professionals to acknowledge when they don’t have the skills or resources necessary. ‘It’s okay to say you don’t know’.

LIBBY HILL – CONSULTANT SPEECH AND LANGUAGE THERAPIST

Our next Speaker was Libby Hill, who will be known to many of you as the Communication and language specialist who has done so much to support families with her business ‘SmallTalk ‘

She also looked at Autistic parents and Parent Blame.

Like Tanya she discussed the Bias surrounding Autism and parenting, misconceptions about autistic people being less empathetic or emotionally expressive, when in fact the opposite, in her experience, is true. She discussed the lack of research into PDA and how the literature research must catch up with the clinical knowledge of PDA which is out there.

Libby talked about system ableism, where professionals are not trained to recognise autistic parenting strength which are different but valid; how Autistic parents are assumed to parent poorly because of their autism, not seeing any issues with the child’s genuine additional needs; that autistic parent-child dynamics are very different to neurotypical ones. She also looked at the historical context and that we have yet to shake off the idea of the ‘refrigerator mother’ from over 50 year ago, long since debunked.

Libby explained that: ‘Running a Neurodivergent-affirming household doesn’t look the same as /Neurotypical expectations of what parenting should be’ She gave the example of a parent criticised for giving her autistic child chicken nuggets for Christmas dinner. Everyone in the audience knew what the child’s Christmas dinner would have been before she said it!

Stress and Burnout in Autistic Families was discussed and how that was often mistaken for incompetence and neglect. Yet stress and burnout is NOT an inability to parent. The parent may also have experience of trauma with school and authority which can be misinterpreted.

The most important thing, however, is communication difference, and how communication is different for Neurodivergent people. They may not recognise the importance of body language, eye contact, polite niceties or conversational conventions. This is not a problem – until you are with someone who EXPECTS those things – such as a Neurotypical professional with no training in autism.

Some autistic people may have a freeze or masking response to being challenged or to authority, and when stressed are unable to access higher executive functioning; this again leads to confirmation bias amongst professionals, mistaking this perfectly understandable neurological response for poor parenting.

Libby explained that it takes two to have a communication breakdown; professionals expect courtesy and respect from parents, but when it is a parent up against the system, it is the parent who will often be at a disadvantage or overwhelmed. Autistic parents are therefore pre-judged and their parenting devalued.

Libby gave the example of parents who had been judged because of their children’s Gestalt language processing whereby children would communicate through unrelated and sometimes triggering phrases like ‘You’re strangling me’ meaning ‘I don’t want to go out today’.

Libby thinks it would be helpful if we saw Autism as a cultural difference, much as we do with race and religion – make an effort to be understanding and tolerant, de-pathologise autism and accept difference.

Libby recommended Kieron Rose (The Autistic Advocate) as an excellent resource for neurodivergent people.

KIRSTY MACMILLAN – SOLCITOR, COURT OF PROTECTION SPECIALIST

Our final speaker of the day was Kirsty Macmillan from Irwin Mitchell solicitors who talked to us about potential legal routes for combatting decisions made by public bodies.

From a legal perspective there are no options to specifically challenge parental blame and FII but here are things that can be done. Letters from solicitors can be very effective in detailing a public body’s failings and there are specialist Education and Human Right’s solicitors who can help.

Kirsty talked us through the children’s act and what that meant in terms of rights and redress, and what the legal process can do to support a parent when the EHCP process is unsatisfactory. She recommended being prepared for when a child becomes an adult because things then ‘drop off a cliff edge’ and parents become ‘carers’. She strongly recommended getting adult services involved before a child turns 18.

Kirsty explained about Care Act Assessments (social care) and Continuing Healthcare Assessments (health) and what that meant in terms of finance and support. She talked about capacity and the mental capacity act and Power of Attorney. She described how LAs can drag their heels until the conditions children and young people and adults find themselves in become the norm. She urged acting before that happened.

Kirsty talked us through Judicial Reviews and how they can be used to challenge any decision of a public body, like not providing needs assessments or the outcomes of needs assessments, discrimination etc. Judicial Reviews are intended to examine decisions that may be irrational, or which did not use the correct process to be achieved, that are unfair or contain misleading/incorrect information – however there are time constraints with this and parents are urged to begin the process as quickly as possible.

Kirsty said that often LAs will take ‘irrational’ etc decisions because it saves them money in the long term and even going to Judicial Review can be money saving.

Kirsty took a lot of questions and was able to give quite a few people present some reassurance. Her details are in the pictures.

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It was an amazing day full of surprising if sometimes disheartening information, but we all left feeling more educated, enlightened and empowered.

For more information on the conference, and on the Parent Blame Reports generally, do contact Donna Kelso at Voice for Change https://www.facebook.com/groups/voiceforchangestaffordshire

PARENT BLAME CONFERENCE TUESDAY JANUARY 28TH 2025