A guest blog from an anonymous professional
So what do you do if the suggestions that your child’s difficulties ‘don’t exist, as professionals can’t see them’ or that ‘you are causing or fabricating your child’s difficulties’ start to be aired publicly?
These are some tips based on shared experiences. This is not intended to be a definitive list of what to do but are some thoughts and ideas gathered from a few parents to support you in this situation. This a complex area and it is important that you seek further specialist support and advice if the concerns move forward from suggestions to formal child protection investigations.
Fabricated or induced illness (FII) used to be called Munchausen’s Syndrome by Proxy. Fabricated or induced illness (FII) is considered a rare form of child abuse. It occurs when a parent or carer, usually the child’s biological mother, promotes the sick role by exaggeration, fabrication (lying), falsification or deliberately causes symptoms of illness in the child. It covers a spectrum of behaviours from causing or inducing physical symptoms to alleging unfounded psychological illness. It can include situations where it is suggested that the parent is overanxious or has mental health problems themselves and are seeking attention themselves from medical professions. One of the features is that the carer reports symptoms in the child, but clinical examination and investigation do not support the carers report.
So given this, you would think that, if your child already has a clinical diagnosis e.g. Autism, then that should put the ‘the parent is making it up’ stuff to bed, unfortunately it doesn’t always stop it happening particularly when resources to support needs are limited. So, if your child has a diagnosis which other professionals dispute, ask the professional disputing the diagnosis to contact the person or team who made the diagnosis. You could suggest getting everyone around the table to discuss the concern about the diagnosis.
If your child doesn’t have a diagnosis and professionals don’t ‘see’ what you do at home, try to help them see it e.g. you can make an audio recording of a full morning in your home without your child knowing. This is helpful as they can hear how it really is and how you are responding to your child over a longer period of time. This is much better than a video or short snippet of a recording which arguably could be a ‘one off’ or staged. For one parent, they recorded a whole morning and played it to school..… it was a ‘warts and all’ recording of which the child was unaware. The school staff member could hear the parent trying everything to get the child dressed, they could hear the distress of the child and what the child was saying about school and they finally recognised that there was a real problem.
One aspect of a potential of fabricating is that ‘only you see it’ so try to be open to letting others see what is happening e.g. if your child won’t leave house to go to school you may be resistant to the idea of staff coming round to ‘help’. For one parent this was actually helpful because the staff member quickly realised that the child was very distressed and they couldn’t do anything to help or change the situation. Some parents feel it is intrusive have staff in the home and it can stop home being the child’s safe space. Being resistant to having staff come into the home, can be interpreted as more evidence that the parent is fabricating, particularly if no one else sees the behaviour. You are in a no-win situation and you need to weigh up the different options carefully.
There is a growing awareness about masking or camouflaging behaviours where children present differently in different situations. You can share this information with the professionals supporting you, as they may not have come across this situation before. A teacher friend admitted to one parent that she thought parents were exaggerating about school refusal until she saw school refusal in her friend’s daughter and realised that a child can present very differently in different environments. Teachers often get very little training in special educational needs and may have not encountered this situation before.
One difficulty parents can face is that, once ‘fabricating allegations’ are raised, continuing to seek a diagnosis (if your child doesn’t have one) is viewed as ‘a red flag’ sign; the parent is not accepting the professionals view that there is nothing wrong with their child. This is another no-win situation. However, the assumption in fabricating allegations is that nothing is actually really wrong. So, for example, with mental health or ASD, an assessment needs to occur and the doctor must rule out other possibilities before supporting the view that the parent is fabricating concerns. A number of parents have found having a new doctor assess the situation (paediatrician or psychiatrist) has been very helpful, as their view generally is respected over that of school staff. Reports from NHS clinicians tend to be respected over independent specialists, particularly where there are also allegations of ‘doctor shopping’. This isn’t right as professionals are bound by ethical codes of practice and an independent report is equally valid but you need to be aware of this if you choose to seek independent reports.
Children’s social care can investigate a concern of fabricated or induced illness without telling you. It is one situation where telling you about a child protection investigation can be delayed while they collect evidence. If they find evidence to support the concern, you would then be told about the investigation. However, if they are investigating, they should be following a procedure to collect information in a systematic way and medical staff at a senior level should be involved in reviewing records and preparing a chronology of events. If a referral to children’s social care is made (and you are informed about it) then do your homework. Look up your Local Safeguarding Children’s Board website for your council and on there you will find the online link to the safeguarding procedures. Read the procedures for your area so you understand what is happening and can check that the procedures are being correctly followed e.g. time frames when you should receive copies of reports.
There is national guidance on how paediatricians should be involved and how investigations into fabricated or induced illness should be carried out. Read the guidance to understand what should be happening here
There are also national guidelines, here, and your local safeguarding children’s board procedures should also have a specific section (Search online for the Safeguarding Children’s Board for your Council).
Keep a record of interactions and write notes on conversations. Keep a diary of events. Email your notes of the conversations with professionals so there is a written record. This was essential for one parent as they could prove what they had done to share their concerns and work with professionals; they were able to put together an email chronology to evidence their attempts to seek help and work with professionals.
Bring someone to support you to appointments or at meetings e.g. so you are not on your own and they can also take notes for you. It is helpful to have someone to debrief with who is not as emotionally involved as you are.
However you feel, don’t get angry at professionals or the social worker. The social worker may not understand the special educational needs system (particularly if they are a child protection social worker and not a children’s disability social worker). They are being told by professionals you are the problem. They could have been told that you are not engaging. They have no reason to believe that the professionals are wrong. You being critical of other professionals, angry at the social worker or refusing to talk to them, supports the picture they have been given. Give the social worker information and evidence to support what you say. E.g. copies of medical letters, diagnosis letters. Find out how much they know about special needs and you can ask for assessments to be carried out by someone with training in specific areas e.g. disability, mental health or ASD.
Make sure the Social Worker has contact details for everyone involved and if a child protection conference is called then ask (and double check) that everyone you want to be there is invited. This is important if there are people who have evidence to support you. If professionals can’t attend the meeting, they can submit written reports to be read out. Be aware that ‘seeking professional allies’ can be viewed as a ‘red flag’ for those seeking evidence that you are fabricating your child’s presentation. Again, this can be a ‘no win’ situation but you do need professionals who can ensure that a range of explanations are explored rather than seeking evidence to support their suspicions see here for more information.
Look at getting a referral for an independent advocate for you and / or your child. They will take your child views and ensure that they are put forward and accurately recorded in any formal meetings. Children’s Social Care should collect your child’s views and enable them to be involved in any formal meetings but they are also investigating the concerns and this dual role can be challenging. An independent advocate can attend meetings to put your child’s view forward and some parents have found this very helpful.
Undertaking a subject access request can also provide additional evidence. However, you should be aware that you may receive information that is difficult to read and make you have personal support to do so.
At some point, you may want to complain about your treatment, particularly if professionals don’t follow procedures. Again, using complaint’s procedures is another of those ‘red flags’. That is not to say you shouldn’t make a complaint and, if the procedures haven’t been correctly followed, it may be important to do so. One parent made sure that they kept a record of procedural errors and made a formal complaint once the child protection investigation had concluded.
Make sure you see copies of professional’s reports (again being aware of expected timescales is useful). Do correct factual errors in reports in writing. Don’t correct opinions you don’t like, unless you can state evidence (preferably in writing) to support your alternative view.
Seek specialist advice. There are range of organisations who can help you (some further links are at the bottom of this blog). Seek legal advice if child protection investigations progress, and particularly if a legal planning meeting is arranged.
Be careful what you post on social media. Social media gives you access to brilliant support groups but please be aware that what you post is not anonymous or confidential and personal information can be shared. They are a great source of support so do use them to ask for help but then hold your detailed personal conversations in private messages rather than in a public forum.
If you have ASD, then you may find that you need additional support. Recent research and anecdotal evidence suggests parents with ASD are more likely to find themselves involved in these types of situations which is not surprising given that allegations of fabricated or induced illness are often based on staff perceptions of your communication or your manner. If you suspect that you may have undiagnosed social communication difficulties which are contributing to the situation (which is not really surprising if there is ASD within the family) then getting your own diagnosis may be helpful so you can be supported rather than misunderstood.
Recognise that you can and will be judged whatever you do. For example, one guidance document states that, if you raise concerns that professionals are thinking you are fabricating the illness, this in itself is a ‘red flag’ that FII could be present. As you can see from the thoughts and experiences above, lots of natural responses can be taken as further ‘red flags’. You can tie yourself in knots trying to say the right thing to professionals and just end up making it worse. Trying to stay calm, honest, and communicate openly against this background is very difficult. Our advice is please don’t try to be anything other than yourself.
Being in the middle of any allegation is very stressful. Do make sure you look after yourself (eat, sleep, rest, self-care and keep your daily routine). If your mental health declines, this is not going to help how you are seen by professionals, who are at this point looking for evidence that you are unstable. You may well be frightened, ashamed or embarrassed about this situation. Tell people who you trust. However, as much you want to hide away, you need people around you who can support you through this. This is time to accept offers of practical help from friends and to seek support from others.
Remember, this has happened to other people and you are not alone – you need to keep going and survive.
Sources of support:
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