Autism and the Spectre of FII
Reflections on the First National FII Awareness Week (UK)
From the 2nd May through to 6th May, I was privileged to be involved in the First National FII Awareness Week (UK) organised by Sunshine Support CIC. For those unfamiliar with the terminology, FII is the abbreviated term for “Fabricated or Induced Illness” which is a term professionals give to parents when they believe that they are “exaggerating” their child’s disabilities or behaviour. The term is not a clinical diagnosis, but an assumption based upon perceptions of parental behaviour, often as a result of their frustration at being denied access to the support they feel their child needs and a consequence of asking for help from the local authority.
I have covered my own personal experiences of this in an earlier article, and more extensively in my new You Tube Channel, launched this week, “ Musings from an Autistic Carer.” The incidences in which parents fall fowl of the spectre of FII or institutionalised parent carer blame are most felt by parents of autistic (especially PDA) children and those with rare genetic conditions or complex medical presentations such as Ehlers-Danlos Syndrome or EDS.
Whilst autism is present from birth, the symptoms may not manifest themselves immediately and consequently autism may be misdiagnosed or under diagnosed for a number of years. The unique and sometimes perplexing individual presentation of autism , particularly when an individual masks their autism symptoms or appears to behave differently in the home and school environments, leave parents open to criticism of “exaggerating” their children’s difficulties or behaviour.
Often autism occurs alongside other conditions such as ADHD, dyslexia, dyspraxia, joint hypermobility and epilepsy. These can cause diagnostic shadowing, in which a person’s symptoms are attributed to other conditions or a psychiatric problem. This adds to the confusion, doubt and disbelieving of parents and professionals, often exacerbated by conflicting and confusing viewpoints from all parties involved in a child’s care.
9th to the 15th May 2022 is “Mental Health Awareness Week” in the UK. Autism is not, in itself a mental health disorder (please refer to my earlier article about this), however, research has consistently shown that their anxieties due to social situations, sensory issues or isolation, make autistic individuals more likely than neurotypicals to experience mental illness.
For example, a national survey by the National Autistic Society in 2019 (published in their Good Practice Guide for Mental Health Professionals 2021, page 6), “found 76% of autistic adults report reaching out for mental health support in the last five years (i.e. 2014 to 2019). Anxiety and depression are the most common mental health problems amongst autistic people.” It is highly likely that this percentage is likely to be far higher now as a consequence of the Coronavirus pandemic. In addition, the frequent and unpredictable changes to education over the past couple of years have had a significant impact upon children who are autistic.
As we consider FII following the recent awareness campaign and Mental Health Awareness Week, the mental health impact upon parents (mostly mothers) can be devastating. Studies, such as Pohl et al (2016) have reported that “1 in 5 mothers of a child with autism had been investigated by social services.” Further, Griffiths et al (2019) identified that 19% of intellectually able autistic adults who were parents had professionals question their ability to parent, 14% had been investigated by social services, 9% had been put through CP investigation, and 4% lost custody of their children.”
The trauma and damaging impact upon parental mental and physical well being cannot be overstated.
Here are some examples from Sunshine Support from the FII Awareness Week:
(The experience) “left us with huge trauma… Scared to go for an (autism) assessment… Scared to go to the GP…Scared everyday of a knock on my door.”
“Every day is a fight and it’s exhausting…it’s mentally draining, but our fight will go on.”
“The public suggestions left us ragged…(but) we are FII survivors.”
As someone who has personally gone through this ordeal, I can fully identify and empathise with these stories. This is why I am proud to support the National FII Awareness Week and Mental Health Awareness Week.
I would like to thank Sunshine Support CIC for their consent to discuss their FII Awareness Week, and all of the parents who have been sharing their stories with me and been so supportive of each other.
For information on FII Awareness Week, please go to https://sunshine-support.org/fii
For information on Mental Health Awareness, please go to
https://www.mentalhealth.org.uk
To find out more about autism, book a training session, or 1:1 professional advice and support, please go to my website-https://wired4autism.co.uk
References:
Griffiths, S. et.al : (2019) “The vulnerability experiences quotient: A Study of vulnerability, mental health and life satisfaction in autistic adults, ” Autism Research, 12,1516–1528
Pohl, A. et.al : (2016) “Positive and negative experiences of mothers with autism,” Poster Presentation, IMFAR, Baltimore
