The stories below have been submitted by families who have been accused of Fabricated or Induced Illness. They are not intended to scaremonger but to highlight the trauma these individuals and families have gone through. (All submissions are anonymous).

Thank you to everybody who shared their story..

STORY ONE

“I was recently told by a CAMHS therapist that my ASD PDA teenage child, who has been unable to attend school for six months due to anxiety and who was referred to CAMHS with suicidal ideation and has since self harmed, that there were no mental health issues and they were “just acting up” because I hadn’t been disciplined enough and had “let things slide”. The therapist recommended I punish my child more and go on a parenting course. This was after five months of me begging CAMHS for urgent help. Ironically, the course they recommended was a post-ASD-diagnosis workshop for parents which I had actually attended in 2019. While it was quite helpful for me at the time, my strongest memory of it is that there were many parents there whose children were presenting extremely challenging behaviour such as stealing, lying, violence, smashing up the home, refusing to wash, refusing to eat/drink, etc. and there were absolutely no strategies at all offered to help any of them. The workshop leaders just said, “Yes that does sound challenging” anytime these questions were raised.”

STORY TWO

“My child having extremely complex needs was looked after at age 6 this was devastating as a Mum & our family but having many a number of Years with “ child in need “ meetings & getting no support carer burnt out happened & I put my child in care . I didn’t understand the system & a complex diagnosis of ASD, PDA, ADHD, ODD, sleep disorder, pragmatic language and learning disabilities with CAMHS & Birmingham City Hospital a diagnosis at 9 was established. When I understood that my sons needs were not being met …. I started the with a educational statement to search and ask for a specialist setting during the tribunal process I was accused of Munchausen Syndrome by Proxy and Fabricated or Induced Illness, being obsessive mother with my son and his disabilities and if refrigerator mother. I was attacked all the time, disempowered and one social worker even was trying to block my child having a assessment in a school.”

STORY THREE

“After two failed CAMHS referrals I took my daughter for a private assessment. She was diagnosed ASD, ADHD and PDA. Her school was always insistent that she was fine at school despite her saying for a year that she did not want to go. When I shared the diagnosis the school accused me of not handing the forms in that they had filled out and did not believe the diagnosis. They still refused to provide any support for my daughter. This was just before Christmas. My daughter was unable to attend after the Christmas holidays. The head teacher said her being unable to attend was not a reason to be off school and when I said it was due to school trauma she was clearly annoyed and said I couldn’t say that as I was not a doctor. Then without my knowledge she was reporting me to social services about keeping her off school , isolating her etc. She was coming to the house telling my daughter that she had to go to school which made my daughter act like and say she was a baby to avoid the demand. She raised this as a serious concern which resulted in a police protection visit. My daughter and I were terrified. My daughter was screaming, banging her head on the wall and saying she couldn’t breathe. I was trying to comfort and calm her while the police were demanding I answer them instead of prioritising my daughter and telling me to look at them. I am autistic and have poor eye contact. This resulted in them saying that they were so concerned about my mental state that they took my daughter.”

STORY FOUR

“When my son was 6 years old his behaviour was spiralling. I would get bitten, kicked, scratched, he would literally throw things in his bedroom. I reached out to school for help (I didn’t know where else to go) and was told by school that he didn’t present any of these behaviours in school. Things got worse and I asked school to help me. They sent the school nurse who told me that it was how I was parenting and suggested some tips for me to try. Nothing worked so I contacted her again, she referred me to parenting classes, which I attended but no one could offer me anything I wasn’t already doing. I asked for a referral to the den and an autism screening assessment was done. I was told although he had ASD traits they wouldn’t diagnose him because they “weren’t severe enough”. Things got worse and I reached out to the school nurse again, she sent me on another parenting course and again there was nothing they could offer that I wasn’t already doing. It was suggested by the school that I had PND after the birth of my 2nd child and maybe I needed to see my doctor! The school nurse arranged for a one off session with CAHMS who came out to the house to talk to me and my husband about what was happening. The CAHMS worker who visited said that my sons behaviour was a direct result of my parenting, my anxiety and my husband working long hours. It was suggested things weren’t as bad as I was making them out to be – it was more my handling of the situation. I was totally upset at this and blamed myself – I mean if a professional is saying it then it must be my fault. Fast forward a few years and I was on anti-depressants feeling like an absolute failure. My son now aged 10 was really struggling and attempted to hang himself because he couldn’t cope. Again we were referred to CAHMS who told us we didn’t meet the threshold for support. Completely at the end of my tether I got private counselling for my son. After a few sessions, the counsellor told me that he believed my son was in the spectrum and he wrote me a letter (which I gave to my gp) asking for my son to have an assessment for autism. Suddenly everyone believed me and at aged 11 my son was diagnosed with ASD. As parents we were made to feel like we were making things up, not coping and working too hard. Once another professional listened to me and saw what I saw, people were willing to listen and help my son. It was such a painful experience. Not my youngest son has been referred for an autism assessment and school have identified some issues he is having. I am absolutely dreading going through the process again – although this time I am a bit more informed and in a different place mentally. Having said that I still feel sick at the thought of having to justify my sons difficulties.”

STORY FIVE

“Our son was premature and was in NICU. He went from 3.28kg to 2.85kg whilst in hospital. He never gained back his birth weight until 2 months old. Started with reflux at birth. Discharged early due to covid and lack of support due to covid in community. Was under dietician and hospital regularly due to this. Put on allergy milk and pump feeds. I requested help from other parents on a FB group, a professor in gastro contacted me and offered to have my son in his care in a hospital out of area, said he could sort him. Asked for transfer as my son was in local hospital due to weight issues already. Transferred but before transfer nurse raised FII as we complained about her being sexist because I (mum) don’t like hospitals so wasn’t with my son on admission and she didn’t like dad for some reason and made it very clear. FII ruled out by another consultant who reviewed case. (We weren’t aware until we got the notes) Everything fine and gaining weight, not great amounts but better. Ended up on ng pump feeds. Visited with daughter, she had a major meltdown in the hospital (possibility of autism) and father was arrested as hospital security didn’t like the sound of it and more false statements. Father released with NFA as no evidence of abuse. Triggered social services. Section 47 instigated, resulted in NFA until I complained about treatment of father and new gastro consultant doing CP examination without consent. Next thing new gastro consultant 100% adamant in FII to social services. NG tube wasn’t working (wouldn’t test so lost weight again) so asked questions about NJ that the professor had recommended to new consultant. Consultant not happy with me asking about NJ. Court started. Professor denied involvement with family (!!) Children removed for 14 months. Both parents diagnosed autistic in this time. I went to a residential unit for 4 months with both children, passed with flying colours with no evidence of FII. Both children have genetic condition (son was diagnosed at start of social involvement, daughter diagnosed after case ended as LA refused for any testing despite identical issues with reflux/weight gain as infants). Court ignored. LA then tried saying abusive relationship from father to mother as coercive control. No proof. Autism expert and expert paediatrician stated no concerns with parents. Gastro expert (who was friends and previous worked with accusing hospital staff) claimed my mental health caused all issues leading to FII – despite no evidence of this. LA finally withdrew last second before parents due to give evidence. Residential unit flagged daughter likely autistic and needs assessment. LA said if I ever get her assessed they will be at my door in court. Left us with huge trauma, our son doesn’t remember but our daughter does and is a very different little girl. They are now 2 and 3 (nearly 4) years old. Scared to go for assessment of daughter who is struggling. Scared to go to GP. Scared of my daughter having meltdowns in public (happens often). Scared everyday of a knock on my door. Do everything I can now to not risk any flags. Got a new GP and explained everything to him, he treats me and the children well but still always on edge. Relationship is difficult from the trauma and everyday I live thinking I’ll never see my children again, which is horrendous. I now try promote autistic women and girls and I’m a student nurse trying to change attitudes of professionals from the inside out and hoping to help families like mine one day. I lost my 2 babies for 8 months, dad wasn’t allowed in residential unit as deemed “ too high risk”, I lost 8 months of my children’s lives due to lies from professionals and false accusations. My partner lost 14 months of their lives. My son was 4 months old, my daughter was 23 months. Time we will never get back because they will never be that young again. My son didn’t know I was his mother. My daughter was hurt and confused. I wanted another, but I never will have now.”

STORY SIX

“We are an adoptive family of five that is, two adults and three children. After eleven years of fighting for support and recognition for our eldest child, he crumbled. The wall he had made to ensure he survived in schools, in the playground, at friends homes, literally fell down and with it went his education, his social life and the remains of any emotional stability. His autism was apparent to us but apparently his complex chronology and history, the reasons for his adoption meant that he ‘could not’ be autistic too, certainly not for him to have a timely diagnosis over the nine years he had then been in our family. In this time we were desperate for a family life free of social care, adoption services and special measures that seemed to hang over our home. We had adopted two other children subsequently both of whom came with high probability of social and medical needs. Our ability to provide for all three children pre-adoptions was scrutinised, meetings with Chief medical officers, genetics, social workers all had to satisfy the court that our children would be served well by us as parents. It’s almost impossible to believe that as an adoptive family we would seek to add more complex issues to our children’s lives by suggesting that they needed additional unnecessary diagnosis or treatment. But that is what happened. In the midst of meltdowns, child to parent aggression, PTSD, education break downs, a short break service and sibling bonded violence we presented ourselves openly, with honest opinion and integrity. On attending our last TAF meeting I was surrounded by a dozen people, hitherto unheard of in the typical 3-4 gathering. Suggestions were made that I was struggling, husband was absent from meeting, money was short, I was seeking DLA for a second child and a diagnosis of autism for the first, I spoke and wrote too cleverly about my children. I rallied and queried their assumptions, but when the minutes arrived I saw blatant disregard of me, my husband and children. What I saw in black and white was the DSM criteria of FII on the pages. We were in the thrall of abject horror, social workers corrected some parts and redacted others, I was assured corrections had been sent out, but the collateral damage was huge. Under sage counsel from one member of staff we closed our small business, closed our doors to any social care support, met only the most pressing of medical appointments and withdrew our son from school, respite, and I just stopped. I stopped the fight, to staunch the massive flow of energy being spent on professionals so that i could direct it wholly to keep our family together. These actions and those of my husband to leave work and be a full time carer was just enough to avoid further investigations as to our ability and motives to parent our loved children. We are the luckier ones, evidence of FII being noted could be incidental, anecdotal, certainly the thinking of a burnt out adoption support worker (who had left a Child Protection post). We accessed our records, huge pages redacted, secret meetings and comments made in casual light conversation had been pasted into a file that looks from a very particular date to be a vendetta against me and my family. Those were a painful couple of years where the threat of loss, our credibility, our voice for our children was lost. The relationships I had tried so hard to make with schools, health and socially felt dirty and compromised. I almost stopped being able to give any opinion on anything. The public suggestions of FII rent our family, leaving it ragged. We stitched it painstakingly back together. We have an autistic son, we have 2 children with the life limiting possibility of a horrible illness. We are FII survivors.”

STORY SEVEN

“Our daughter passed away sadly at birth in 2011 and not long after we got pregnant again. He was the shining light at a very dark time in our lives we much needed. He was born a healthy 9lb 4 and it’s safe to say he flew into the world like a rocket and hasn’t stopped bouncing around since. From birth he struggled with sleeping and was a fussy eater. We always thought it was just something he would grow out of. As he got older we started to notice little things he did like lining his toys up, obsessed with the colour orange, struggled to potty train, likes everything soft to touch and hated wearing clothes. As he grew it was like he hit the terrible 2s and never grew out of them. He became violent and fussy in busy places often having major meltdowns causing us to leave. He started to become very withdrawn and liked his own company. When he started school his anxiety got worse. He would scream every day at drop off to the point he would be pulled off me and held so I could leave. On pick up he would be violent towards us and be in a fussy mood all evening leading to meltdowns and late night’s with no sleep. No matter how late he goes to bed he is up at 6 am ready to go again. I approached the school when he was in year 2 with concerns over autism as he seemed to have a lot of traits. I was told time and time again he is fine at school and must be a home life issue. Then at a meeting with the school we got accused of making his symptoms up and that we were putting the death of our daughter onto hum and making him act this way. As you can imagine shock and anger hit us and I actually walked out over it all. I didn’t give up no matter how many times we got called out by the school and eventually he was diagnosed with autism in 2020. The school couldn’t believe it and even phoned the doctor who assessed him to check we had really attended. The treatment from start to finish was horrible and there was times we just thought about pulling him out of school completely. We got many outside agencies involved all of who stood by us but even now everyday is a fight and it’s exhausting. He needs a EHCP which again the school refused to apply for so we did it ourselves, attend every meeting ourselves and even paid for a detailed report on him so we know more about him. Throughout the whole experience so far we have been nothing more than called bad parents, faking illnesses, making up symptoms, mothering him, being called out for being a working parent. It mentally draining but our fight will go on for our little boy.”

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