Fiighting Back-Chapter Four: Advice for Parents

Advice from advocacy experts (and parents who have been through it)

As mentioned previously, “true” FII is an extremely rare form of child abuse. It is NOT a formal medical diagnosis. but an OPINION formed by professionals when a child presents complex or perplexing symptoms or there is a dichotomy of reported behaviours between parents and professionals which lead to confusion and disagreement , for example when a child presents as “calm” at school and “challenging” at home.

FII , now sometimes labelled “perplexing presentations,” is NOT the same as Munchausen Syndrome by Proxy (MSbP) or Factitious Disorder Imposed on Another (FDIoA), which have a prevalence of between 0.4 in 100,000 to 2.8 in 100,000 of parents. With over 12 million children under 16 in the UK, this means a possibility of between 50 and 351 “true” cases of MSbP. Statistically, therefore it is FAR MORE LIKELY that a child has a complex condition that is difficult to identify or diagnose, than a family is Fabricating or Inducing illness (information courtesy of Cathie Long, Independent Social Worker, and Dr Judy Eaton, Clinical Psychologist, 2021, via Sunshine Support ).

As FII is merely an “opinion” and not a diagnosis, it is easy to falsely identify concerned and loving parents with this label on the basis of conjecture masquerading as fact. Pohl et al (2016) reported a staggering 1 in 5 of mothers of autistic children had been investigated by social services. This number of false “positives” is likely to be in tens of thousands.

So what can a parent do?

IF YOU FEAR BEING ACCUSED:

Understand, sadly, having a diagnosis doesn’t protect you.

Gather all your documents in a file for each child and have photographic evidence where appropriate.

Keep a symptom/reaction diary. (This will make it easier if social services become involved).

Record all meetings (for your own protection and use). If this is for your personal use only, it does not infringe on GDPR or other people’s respect to privacy . You have the legal right to record, however, do not share this information without consent .

Never use medical terms, even when professionals may have encouraged you to do so (this can be seen as a red flag for FII). For example, my wife and I were advised (in writing!) by a paediatrician to read up everything on Autism, but very time we mentioned the “A” word (autism), it produced a red flag to professionals!

Understand, that if you are accused the school will be keeping notes on your conversations.

If your child is called into do a period of observation then be aware that they are maybe looking at you as the cause as well as other possibilities.

WHEN YOU ARE ACCUSED:

Only answer questions you are asked, DON’T volunteer information, don’t be scared of silence. Be very wary of “over-sharing. ” Whilst professionals can appear very friendly at times, they are not your friend, and their prime responsibility is to your child, and if they perceive a “safeguarding risk,” they have a duty to act upon it (sometimes before all the relevant facts are collated).

Do NOT use medical terms, unless formally diagnosed (in which case always name the doctor and hospital). NEVER say I think my child is … or has …without validation. (You place yourself at risk of “over-medicalising” your child).

Get ADVICE before choosing a lawyer (preferably from an advocacy service or charity specialising in FII, such as Fiightback, Sunshine Support)

Always use a lawyer from OUTSIDE your area (reduced risk of any conflict of interest), and preferably one who is knowledgeable about FII.

Never communicate with the social worker by text. It can’t be used as evidence in court. Always ask the to use email, and SAVE ALL EMAILS!

ADVICE ABOUT SOCIAL WORKER VISITS:

If Social Services turn up on your doorstep without an appointment, you have a right to refuse them entry. But do show your child through the window.

Ask the Social Services to phone in advance to make an appointment which is mutually convenient.

Arrange the meeting so that you can have a friend or advocate with you.

Only answer questions you are asked, don’t volunteer information, don’t be scared of silence.

Do not try and make friends, treat the meeting like a business meeting.

Make sure your home is clean and tidy with fresh food in the fridge. The social worker will ask to see the children’s bedrooms.

Make sure there are age appropriate toys on view.

Always be open to any suggestions they make, never appear to not be willing to comply with their strategies.

Know your children’s rights: in that SS will need to talk to your child without you present but your child doesn’t have to be alone with them, your child has the right to an advocate or a trusted adult to be with them.

GENERAL ADVICE:

Talk to your family/partner, they will understand.

After reading your reports or notes remember it can take a couple of days to recover, give yourself time.

Your extended family — siblings etc might not understand — be careful — family relationships can be easily fractured by this kind of stress.

Make sure your social media is set to?private. Consider disguising your name in some way.

(Contact Fiightback and Sunshine Support for support and confidential advice. Consider joining their Facebook pages for additional support).

Write a list of people on your side, friends, family, professionals, put it somewhere you can see it to remind yourself you are not alone. However, be mindful who you share information with. Not everyone may understand, and some will be quick to judge (e.g. “no smoke without fire”).

Remember you know the truth.

Be kind to yourself, you will be in shock, but you will survive this !

FINAL RECOMMENDATIONS:

• Provide as much evidence as possible to support your child’s difficulties (e.g. GP records, CAMHS (Child and Adolescent Mental Health Services, specialist consultants
• Engage good legal representation (you may be eligible for Legal Aid Funding)
• Link up with other parents with similar differences
• Instruct expert practitioners to undertake assessments e.g. psychiatrist , educational psychologist, speech and language therapist, occupational therapist, independent social worker, play therapist
• Keep accurate records of all correspondence with the local authority
• Endeavour to cooperate and work with the local authority to avoid escalation of any situation
• Use a Subject Access Request under GDPR (General Data Protection Regulations) to gain copies of records held by agencies. These can be made verbally or in writing and agencies, individuals or organisations must respond within a month to your request. In most cases , a fee should not be applicable

Further information and advice on FII and concerns about local authority concerns about you child can be found at?https://sunshine-support.org

References:

Fiightback (2019)?“Treatment of families with ASD by children’s services”?available online at:?https:www.fiightback.org/post/treatment-of-families-with-asd-by-childrens-services (accessed January 2023)

Gullon-Scott, F.J., & Long, C. (2022). “FII and Perplexing Presentations :What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?”?British Journal of Social Work (2022)?00.?1–17, Oxford University Press.

Pohl, A., Blakemore, M. & Allison, c. (2016).?“Positive and negative experiences of mothers with autism,”?Poster Presentation, IMFAR, Baltimore.