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NAS response

Safeguarding children in whom illness is induced or fabricated by carers with parenting responsibilities: consultation from the Department of Health

Response from the National Autistic Society

The National Autistic Society is the leading charity for autistic spectrum disorders in the UK. It has a membership of over 11,000, a network of 65 branches, and 60 affiliated organisations in autism.

A meeting with Health Minister Jacqui Smith took place on Thursday 11 October 2001 when the National Autistic Society (NAS) raised grave concerns about this guidance document and the impact it would have on parents of children with autism. In acknowledging these concerns it was agreed that representatives of the NAS would meet with Jenny Gray, the official responsible for this consultation, in order that the Society's detailed comments and concerns could be taken on board.

This response is therefore a summary of the key concerns that this document has raised within the autism community.

A rare condition

Factitious or induced illness would seem to be an extremely rare condition - even accepting that it may be under-reported. The health professionals at whom the guidance is targeted are likely to encounter far many more examples of other conditions - such as autistic spectrum disorders before they come across an example of this type of abuse. It is estimated that 91 people in every 10,000 have an autistic spectrum disorder. A practitioner could therefore see 1,820 people with an autistic spectrum disorder for every one case of factitious or induced illness (0.5 per 100,000). Without putting factitious or induced illness into a proper context the NAS fears that there may be an 'epidemic' of this type of abuse, with many parents/carers reported as abusers, when the reality is that their children have very real but undiagnosed conditions such as autism. If this guidance on factitious or induced illness has to be issued, then this rare form of abuse must be put into an appropriate context, with a list of prevalence figures for other, more common, conditions which could explain the 'symptoms' which are said to indicate possible abuse.

Why a concern for autism?

The reason that the autism community is appalled by this guidance is two-fold:

• Firstly, the list in chapter two (para 2.16) which describes symptoms which may occur as a result of abuse is a list of classic pointers to autistic spectrum disorders. These symptoms are, however, presented in a very subjective way (see our light italic type, below) - underlying causes are implied, yet the people being asked to recognise these symptoms are not qualified to make these judgements. There could be many other reasons for these symptoms, all of which must be ruled out by referral to appropriate specialists before suspecting factitious or induced illness in the parent.
• Delay in speech and language or motor development as a result of distress;
• Development of feeding disorders as a result of unpleasant feeding interactions;
• Dislike of close physical contact and cuddling because it recalls episodes of smothering;
• Development of attachment disorders as a result of the mother-child relationship being over-controlled;
• Low self-esteem as a result of not being able to understand why they have been abused in this way;
• Having no or poor quality relationships with peers because their opportunities for social interactions are restricted;
• Under-achievement at school because of frequent interruptions in attendance;
• Development of abnormal attitudes to their own health (for example, the development of abnormal illness behaviour and even somatoform disorders) because of their abnormal experiences

This list of symptoms is likely to become the 'cut out and keep' checklist for your average health practitioner from the 60-plus pages of this guidance document. In order to avoid a wrong diagnosis, a full developmental history of the child must be taken by a qualified clinical professional before the possibility of an autistic spectrum disorder can be ruled out. There are undoubtedly many other conditions which may cause one or more of these symptoms. All of these must also be ruled out through assessments by appropriate specialists.

• Secondly, awareness of autism amongst all the groups identified in this guidance is very low. Given that autism is far more prevalent than 'factitious or induced illness' there is an urgent need for guidance on autistic spectrum disorder to be issued by the Department. This particular guidance document places a huge weight and importance on a very rare form of child abuse, out of all proportion to its prevalence. Yet a complex and far more common condition such as autism is not taken as seriously as it needs to be.

Secrecy

This guidance overemphasises the need to keep any suspicions of this type of parental abuse secret from the parents. It is emphasised at least nine times (five times in the space of two pages, sometimes in bold type) that concerns should not be raised with parents if this might put the child at risk. Whilst the NAS acknowledges the reasoning for this, in practice this means that parents are completely unaware that they are under any type of suspicion - perhaps even the subject of a police investigation - when they believe they are merely fighting for a diagnosis for their child. This is taking us back to the dark ages in autism when cold parenting was blamed for autism. It is unacceptable. As soon as there is any suggestion that the parent is at fault the real needs of the child are overlooked and the parents become the subject of investigation. The document places more emphasis on assessing the family rather than the child. This balance must be redressed if the guidance is to avoid wrongful allegations of 'factitious or induced illness'.

Over anxious parent or perpetrator of abuse?
Professionals are asked to judge whether parents are understandably anxious in their dealings with medical practitioners, or whether their behaviour indicates they are responsible for significant harm. The NAS has clear evidence that in cases of autism parents often have to wait several years before their child obtains a diagnosis, and they have to see several different practitioners along the way, often fighting for referrals. Inevitably they present themselves with increasing anxiety the longer it seems that their child's needs are going unrecognised and unmet. A 1999 report showed that more than 40% of parents wait over three years for a diagnosis of autism (15% between five and nine years, and 10% more than ten years). They are likely to have to see several different practitioners before a diagnosis is confirmed: 65% saw three or more professionals before they got a diagnosis; 23% saw five or more (Opening the Door, Stirling and Prior 1999). This guidance indicates that these parental behaviours could be interpreted as further evidence of abuse on the part of the parent. Yet our evidence demonstrates that there are justifiable reasons for parents of children with autism to present their concerns in this way.

Autism: different behaviours in different settings

Experts in autism recognise that people with this complex disability can behave very differently in different settings. It is therefore fairly common that health practitioners will not witness the behaviours and symptoms that parents describe during an assessment. This is a feature of the disability. It should not therefore be seen as further evidence of abuse by the parent.

Judgements by unqualified professionals

A huge responsibility is placed on social services staff by this guidance, and yet they cannot be qualified to recognise the wide range of conditions which might affect a child and which must be ruled out before suspecting this extremely rare form of child abuse. It fails to encourage referral to experts in order to rule out the wide range of psychological or developmental disorders which may be responsible for the symptoms and it fails to put this rare form of abuse into context.

Assessing the family at the expense of diagnosing the child

Despite an emphasis on the best interests of the child there is a grave risk that professionals will be more inclined to assess the family's behaviours at the expense of failing to identify the very real problems and needs of the child. This is borne out by the observations in chapter two (para 2.32) and chapter three (para 3.54) that even when removed from their 'abusers' they may continue to have emotional and behavioural difficulties. Perhaps this is because they have autism or a similar disorder which doesn't go away by moving the child. It has to be recognised and the right sort of support provided.

In summary

• The far higher prevalence of autism and other developmental/social and communication disorders must be acknowledged in order to place the likelihood of MSBP in a proper context. Otherwise we will see an epidemic of MSBP and actions similar to Cleveland.
• The checklist in para 2.16 should be removed as it is misleading, subjective and there are many other potential causes for the symptoms it describes which require specialist referral and diagnosis.
• Guidance should actively state the need for a full developmental history to be taken in order to rule out developmental disorders such as autism. There should be a thorough elimination of all other possibilities resulting to the child before suspecting abuse by the parent.
• Autism awareness training must be provided for practitioners, particularly for social workers, Area Child Protection Committees and the police.
• Social care and health workers must understand that the symptoms outlined in chapter two can be explained in other ways and they should be trained to identify the underlying reasons for such behaviours accurately in order to refer to an appropriate specialist
• Guidance needs to acknowledge that children with autism may present differently in different settings. Therefore just because behaviours are not witnessed by practitioners in other settings this does not mean that they are not happening at home.

The whole issue of factitious or induced illness - or Munchausen Syndrome by Proxy, as it is more familiarly known as in the autism community - is one of rising concern. Significant numbers of families are finding themselves accused of this form of abuse. There are serious concerns that this guidance will lead to a huge increase in the identification of this rare condition at the expense of identifying the real needs of the child. A Cleveland-style epidemic is feared.

The NAS is keen to work closely with the Department of Health to resolve these issues to ensure that children with autism and their families receive appropriate diagnosis, services and support, without weakening necessary child protection procedures.

Submitted by:
Dr Judith Gould, Director - The Centre for Social & Communication Disorders
Judith Barnard, Director - Policy & Public Affairs
On behalf of The National Autistic Society
31 October 2001

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©The National Autistic Society 2002