2016 – 2017
This work is a very personal and public piece – it is sort of ongoing.
Reworking imagery, reframing the discourse, rebuilding my life.
What happened
In 2015 I was accused of Fabricated and Induced Illness. This, previously (and still frequently) referred to as Munchausen’s by Proxy. I will detail below the most up to date research and terminology and reference points. But here is a brief summary of events that led me to make this work.
- My child was atypical, hyper, controlling, sensitive, bright.
- He was assessed for autism. He didn’t present as what I, or anyone else was considering ‘typical’ autism. He definitely had his issues, including sensory issues, lots of movement seeking, echolalia, anxiety, a need for control, very intelligent and articulate beyond his years.
- As a family we went through all the traditional assessment bullshit, that meant dragging an already anxious child (and anxious parents) across town to crap-hole centre to be assessed in a ‘typical’ way. ‘Professionals’ (and I use the term very lightly) coming into the house, ‘assessing’ him for typical traits of what was still to me unknown.
- He didn’t fit the Aspie profile, certainly wasn’t Learning disabled, and was more than ADHD.
- I expected ‘Professionals’ to know what they were seeing and give me the answers.
- Instead what transpired was a life-changing experience from the stuff of films. What happened is not what I anticipated NHS children development teams to throw at any parent, let alone us, who were clearly doing everything we could to accommodate the boy’s needs and be as communicative and open as possible.
- Clearly too open, too honest, and they saw that as a negative and instead of seeing what was actually going on, i.e. autistic child, autistic parents, pda present, stuff they should have been able to identify as PROFESSIONALS working in the field of Autism Assessment?! They decided instead to disbelieve and misinterpret everything we said.
- Disregarding our instinctive ways of parenting the boy’s immense challenges, they opted to accuse me of causing the harm, they also accused me of making it up, they also said that there was nothing wrong with him, they also said that he wasn’t autistic. All of which was fucking wrong.
- They did however, ironically say that he did have a, b, c , d, issues. Issues that in fact, any decent professional worth their salt, would see were not comparable to an FII parent’s ability to manipulate, but innate symptoms of autism and PDA. They chose not to see; They chose to accuse.
- I now know that this happens to families like mine, A LOT.
- I was broken, and not at all consoled by the notion that it’s commonplace across the NHS.
- Once the shitstorm passed, I attempted to rebuild myself and the family, and bring myself back together by creating an artwork. It was the only thing I could think to do. I wanted to tear off heads, I wanted to pull people apart, I wanted them to hurt how we hurt.
- Largely, I wanted to name and shame the bastards who not only proved their incompetency, but ruined our lives at the time. And one thing that is for sure, they did ruin our life, all of us suffered and continue to suffer as a result of that NHS experience.
- I ‘work’ within the system now for change, but I WILL NEVER be able to forgive those people directly responsible for my pain and continued and grief.
- Everyone should know what happens to families like mine. No one is safe. No one is immune from the corruption of the system. The inept and ignorance runs deeply within established teams, and is allowed to continue, under the guise of safeguarding. Fuck that shit. It’s lies.
Research
It was inevitable that this would become a thing.
i made my dissertation about it, which i will fully publish at some point. With that comes descriptions of terminology.
- Institutionalising Parent Blame – This is an amazing study to know about with Cerebra
- BASW – Specific piece relating to ‘Fabricated or Induced Illness and Perplexing Presentations: Abbreviated Practice Guide for Social Work Practitioners’ British of Association of Social workers.
- https://www.basw.co.uk/system/files/resources/fabricated_or_induced_illness_-_a_practice_guide_for_social_workers.pdf
- and this Challenging Parent Carer Blame – Cerebra
Support & Advice
There is not a lot of support out there in these situations. You will feel alone. You are not. I would say the most accessible help and advice is on your local SEND or Autism facebook page. Read about your rights, know your enemy. Get moral support from people who know the reality of this.
NOTE: These are organisations i have come across, and know help some people if it suits their needs. I do not specifically or directly recommend them, and i am not affiliated with them. But so that you know people are out there with experience.
- SEND National Crisis Here Lots of Special Educational Needs parents are falsley accused of Fii. Reach out.
- Fiighback Open Group: Here It is not condition specific.
- Action for ME: Here I have come across FII accusations of people with ME and Chronich Fatigue
- Ehlers Danlos: Here as i have found that EDS and Hyper Mobility are causes for FII ‘red flags’.
“To her complete surprise she was issued a Child Protection Order in December and had to endure months being monitored by social services, causing her son anxiety and making herself physically ill.
Bernadette said: “It was harrowing- I was numb. It is the worst thing a mother who cares for her child can go through.
“I sat there while they picked apart every facet of who I am.
“They were blaming me for his anxiety, blaming my levels of anxiety for him and his behaviours.
“It is not unusual for parents of children with extra needs to suffer with illness. They were causing more emotional harm.”
She said that as part of the Child Protection plan by social services she could not put her children under any further assessments – medical or behavioural – and because of this it was impossible for her to get a second opinion.