Opinion: EDS, Autism and the Spectre of FII
David Crisp, autism trainer and speaker, explores the stigma that parents can experience when seeking care for children with autism, and what toll it takes on them.
From 2 May through to 6 May, I was privileged to be involved in the First National FII Awareness Week 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 in Social Care Today and in my new You Tube Channel, “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 joint hypermobility, of which the most common form is Ehlers-Danlos Syndrome or EDS.
This brings us to EDS Awareness Month which continues throughout the month of May. EDS parents are often targeted in relation to FII, due to the condition having a multisystemic presentation, resulting in many various comorbidities requiring management across a number of specialisms. Consequently, EDS parents and their children are often poorly misunderstood , leading to safeguarding concerns and allegations of FII. According to Professor Rodney Grahame, Consultant Rheumatologist, and long-term supporter and advisor to the Ehlers-Danlos Society, ‘no other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome.’
You may ask “what has this to do with autism?” Well, in addition to both EDS and autism being strongly indicated in false accusations of FII due to their complex presentations, the two are being increasingly linked together as comorbid conditions. Indeed research studies by Dr E. L. Casanova (2020) , E. Kindgren (2021) and others have found significant associations between neurodiverse conditions such as ADHD and autism and EDS.
At first glance, this may appear strange as autism is a neurodevelopmental difference, characterised by “impairments in social communication and social interaction, and restrictive, repetitive patterns of behaviour (DSM V, 2013)”. EDS, on the other hand, is characterised by joint hypermobility, joint instability, scoliosis and skin hyperextensibility, amongst other symptoms. However, both EDS and autism are present from birth, although both may not manifest themselves immediately and consequently be misdiagnosed or under diagnosed for a number of years. The perplexing symptoms of both, and the fact that every individual presents differently, can cause diagnostic shadowing, in which a person’s symptoms are attributed to a psychiatric problem, rather than comorbid conditions.
9 to 15 May 2022 is Mental Health Awareness Week. Autism is not, in itself a mental health disorder (please refer to my article on this in Social Care Today), 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, 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.
Whatever conditions or disabilities their special needs children have, the mental health impact upon parents 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, EDS Awareness Month 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 EDS Awareness Month, please go to https://www.ehlers-danlos.com
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
Photo by Sandy Millar