Perplexing presentations, FII or genuinely complex condition?

Being a parent of a child with a special educational need , including autism can be stressful at times, but even more so if your child presents with a complex or rare condition , with an array of perplexing symptoms, that may vary over periods of time.

Our children, in common with a considerable majority of young autistic children behaved differently in certain settings, particularly at school. As a consequence, a dichotomy of behaviour is observed, with professionals doubting the validity of parental testimonies and reports. 16 years ago, "masking" in autistic children was much less understood than it is today , particularly within girls and adolescents. Even today , there are many professionals who blatantly dismiss a child from having autism on the grounds that the child presents differently within different settings or environments.

Professionals often state platitudes like "parents know their children best," but when there is perplexing presentations being observed from a child or differences between a child's behaviour at school and clinic than those presented by the parents, their views are too often dismissed. "Challenging behaviours" (I hate that term !) at home are blamed on parents, either their parenting styles or parental stresses (often due to professionals themselves not being fully believing them) having a negative impact on their children. This leads to barriers between both parties, institutional parent blaming on one side, and mistrust and fear of professionals on the other. With the passage of time, I have come to acknowledge that sometimes the observations of a child both by parents and professionals might be accurate, especially if the child "behaves appropriately in school or clinic" (due to fear or masking) but is free to express their anger and frustration with their parents at home, with this being their "safe place" to express their thoughts and feelings without reproach.

Reports from Professor Luke Clements , Fiona Gullon-Scott , Cathie Long and others have found that the actual incidences of fabricated or induced illness are extremely rare. To counteract this some professionals may use the term "perplexing presentations, " which is basically FII by another name to describe situations where a child presents differently at a hospital, clinic or school than at home; or doctors , schools or psychologists are simply unsure of what they are dealing with . As a result, a red flag is raised, thinking it's all down to the parents and cruel and unnecessary safeguarding and child protection procedures are put in place which cause substantial and long term trauma to both parents and children and a denial of both the human rights of the parents and the disability rights of the child and a breakdown in trust may last for several years. .

Further References:

Bilson, A. (2021). Response to RCPCH draft guidance on FII |https://bilson.org.uk/home/response-on-fii/?doing_wp_cron=1632899820.9372239112854003906250

Clements, L., & Aiello, A. (2021). Institutionalised parent carer blame. The experiences of families with disabled children in their interactions with English local authority children's services departments. Cerebra.

Clements, L., & Aiello, A. (2023). The prevalence and impact of allegations of Fabricated or Induced Illness (FII). Cerebra.

Gullon-Scott, F. J., & Bass, C. (2018). Munchausen by proxy: Underrecognition of autism in women investigated for fabricated or induced illness. Good Autism Practice, 19(2), 6. Complementary Index.

Gullon-Scott, F., & 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? The British Journal of Social Work, bcac037. https://doi.org/10.1093/bjsw/bcac037

Long, C., Eaton, J., Russell, S., Gullon-Scott, F. & Bilson, A. (2022). Fabricated or Induced Illness and Perplexing Presentations: Abbreviated Practice Guide for Social Work Practitioners. Birmingham: BASW.

Pragnell, C. (2004). Fabricated and/or induced illness in children: Theoretical basis of FII is unsound. https://www.davidlane.org/children/chdec2004/chdec2004/pragnell.htm