An Autism OdysseyTextPage 54 Having a child with autism is a devastating experience. When, rightly or wrongly, parents suspect that it could have been avoided (by not using the combined MMR vaccine for example) the effects are compounded. To be blamed for their problems, to have your children removed from your home with only very occasional visits permitted is unacceptable. To jail parents who are attempting to protect their children is sickening. We suggest the existence of a syndrome in which officials make false accusations about the fabrication or induction of disorders in children by carers. This syndrome, Munchausen Syndrome by Proxy by Proxy will continue to spread throughout the world unless appropriate interventions are introduced as a matter of urgency. References
Page 55 Adding Insult to Injury
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|||||||||||||||||||||
Problem |
Percentage |
Behavioural |
81 |
Hyperactivity or poor concentration |
39 |
Two or more autistic features |
60 |
Learning difficulties |
77 |
Speech delay |
81 |
Gross motor delay |
60 |
Fine motor delay |
42 |
Glue Ear |
33 |
Joint laxity |
70 |
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The behavioural traits were poor social interaction, poor communicative skills, short attention span, insistence on routines, hand flapping, gaze avoidance, aggressive or violent and no sense of danger.
The authors note that the 'high incidence of autistic type behaviours (81%) and hyperactivity (39%) was striking.' They go on to say 'There is currently a reluctance among health professionals to accept behavioural disorder as attributable to fetal anticonvulsant exposure. Wider knowledge of this association would relieve a great deal of anxiety among parents of affected children, who are sometimes told that either their child must have more than one disorder, or that they have inadequate parenting skills'.
This is just ONE example of many studies, which describe behaviours we recognise as autistic spectrum, which points to one particular causal route. There are many others. However, within MSBP the very presence of a behaviour is taken as indicative of child abuse.
Other 'likely culprits' are the strong and well researched genetic influence, viral infections, obstetric complications, medical problems and effects of interventions, exposure to toxic chemicals, vaccine damage etc. etc. Can ALL of these really be dismissed by the MSBP 'specialist'?
Given the increase of autistic and attention deficit problems in the last decade, often associated with hyperactivity, bowel problems and loss of skills, our advanced scientific community should put its energies into ascertaining why there is this population explosion, and no Government should encourage theories which make assumptions of abuse at first sight of a particular behavioural problem.
A recent UK Government consultation paper, Safeguarding children in whom illness is induced or fabricated (Department of Health 2001) unfortunately does just that. It further sanctions the use of such thinking by including reference to criteria which essentially describe autism (Jones and Bools 1999) but in this Guidance document the reader is worryingly invited to believe that the 'causes' of such features are based on abuse.
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This opinion is pure speculation and it beggars belief that it should be embedded within a guidance document which emerged from a Government Working Party, formed after the Griffiths Inquiry was alerted to the dangers of false allegations. This Inquiry, hearing evidence during 1999, some of it from myself relating to my first false case, reporting back in May 2000, recommended that a working party should be set up to ensure the 'correct identification' of MSBP. (Department of Health 2000b)
This working party signally failed to address the issues of false allegations. It starts from the premise that the diagnosis is sound and gives the impression that it has not even considered that it may not be, despite all the evidence provided to the Griffiths Inquiry. Not one article on false allegations appeared in the references and it would appear that not one member of the working party expressed concern about false allegations, either before or during their deliberations. It cynically uses the opportunity to promote MSBP as it is currently understood.
Articles are referred to which speculate that behaviours we would recognise as autistic are actually signs of abuse. They are likely to influence vast numbers of young social workers and medical practitioners, teachers etc. across the world, to believe, for instance, that if a child does not like to be cuddled, it is because he recalls being smothered. Some of the assumptions are breathtaking, I'll give them that.
Many MSBP self styled experts seem unable to accept that if the disorders are continuing, a crucial criteria is not met, and so the original formulation of MSBP must be wrong - that the illness or disorder was deliberately fabricated and induced by the carer. Remember that this pivotal criterion is the ONLY one which a team of MSBP experts agreed on in a Delphi Project conducted in Auckland University. It should surely follow that IF the disorder continues after being dismissed, there has clearly been no MSBP type abuse.
In other words, the accusation was wrong.
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If accusers want to shift to say that carers or mothers caused a continuing serious disorder then this is a criminal accusation and must be proven through criminal courts using the high standard of proof, not just on the balance of probabilities following a good performance by a high profile 'expert' witness. Indeed, the furore which has built up around this 'diagnosis' has been fuelled by the suggestion -delivered as fact - that 'these' mothers will go on to kill children, as did Beverley Allitt. This has led to the justification of draconian action - such as removing children, preventing people from ever caring for children again and ensuring the MSBP tag is attached to their files, forever influencing the thinking of medics who read them. In turn this can affect the medical treatment which is necessary for children and adults.
The power of suggestion is grossly underestimated. In a Canadian study, it was shown that even when a person KNEW that information had been suggested to them - 'they may still incorporate it into their own recollection of events'. So we can even recall false events and truly believe them. (Higham, P. 1998) This has implications not only for the few families who can be proven to have 'falsified' evidence - but also for the workers who really believe what they have been told is the truth.
Astonishingly, the Consultation Document also invites us to set to one side the criteria that disorders go away once children are removed from the MSBP abuser -the perpetrator - by embracing the findings and assumptions from another study by Bools et al (1993). Far from disorders and problems going away once children were taken into care, they actually found ' a range of emotional and behavioural disorders, and school related problems, including attention and concentration and non-attendance."
For years there were attempts to hide how the children were developing or behaving in care, to avoid having to admit that the problems had not actually gone
away.............. However, a number of foster and adoptive mothers are now being
accused of causing the problems through MSBP type abuse - so it's open season. The MSBP experts' moveable feast explanation is that we should now realise that 'the abuse' probably has a life long impact.
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However - perhaps there was no abuse' by the carer, perhaps the real disorders were actually not recognised and the child and family not supported, leading to a spiral of system abuse which will certainly have a life long impact on the child.
In its current form this Document is highly dangerous to families and children with autism and other misconstrued disorders and to workers influenced by this thinking. There have already been letters in www.bmj.com which clearly indicate that the writers considered the Guidance to be the final version.
Summary of how errors are made - and their effects
INCIDENCE
Whilst the Working Party was deliberating, I was preparing the talk for Durham. I decided it would be helpful to have some statistics on the number of MSBP allegations over the years, to back up my initial prediction that this would become an epidemic if not stopped. Over the years this has been proven to be the case, but secrecy in the system has allowed details to remain hidden - until this time, when it is
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obvious to anyone working with children and families that there is a now a very serious problem.
Whilst most of those falsely accused are still struggling to get their cases to Appeal Court, evidence from support groups for parents of children with a variety of disorders has suddenly noted a mushrooming of this allegation. One social worker said she knew of 70 cases - in one patch. One mother was threatened that if she would not allow her child to be in a study, she would be accused of MSBP. Another woman in the same road had been threatened in the same way. The one who refused was accused of MSBP.
1 expected the Working Party at the Department of Health to be able to give me the figures. 1 naively assumed that if they were looking at false allegations - which one would expect them to do given their brief to ensure 'correct identification' - they must surely first want to see the extent of the apparent problem. What I had not realised at that stage was that they were avoiding looking at false allegations, instead cynically using the chance to promote the use of MSBP and sanction its methods of 'identification'.
From what I could gather the working Party were not easy to speak to, although I was told that 1 needed to speak to Jenny Gray - who was never available.
The Department of Health very kindly gave me all the figures pertaining to children on the At Risk Register. When I looked at the year on year figures (of children placed each year) it was very clear that there had been a year on year RISE in the children placed on the Register since figures were first kept in the year 1995. Within those figures were hidden the MSBP allegations, under 'Physical' or 'Emotional' abuse.
Astonishingly, the figures for Emotional Abuse had almost doubled in five years, froth just over 3000 to just under 6000.
As Chairwoman of Promoting Parenting Skills, a group of psychologists in the UK, I know that the understanding of parenting issues has IMPROVED vastly over that
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time period, and yet we were invited to believe that over the same period of time, increasing numbers of mothers were engaged in the most appalling kind of abuse against their children.
BRIDGE OF SIGHS
'Processes' within MSBP accusations lead workers and mothers and their falsely accused families across bridges hitherto uncrossed. The beguiling emotional impact is extreme and helps to maintain the attitudes of false accusers.
Using an acronym 1 attempt to highlight some of the processes which result in the terrible actions of workers
Suggestibility, Shock, Scandal
Ignorance of real disorders/Ignoring real disorders/Interference with evidence -making picture fit the frame
Gross errors of judgement/Groping obscenely at innocent mother
Hyperbole/Hysteria/Heresy
Secretive/Sectarian/Sensationalist
Using the same acronym - how it affects innocent families Shocked and horrified Impossibility of proving innocence Gross injustice
Humiliated/Hurt/Helpless and Hopeless
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POSTSCRIPT
If readers consider that my opinions are based on ignorance, exaggerated or malicious, they may like to consider the now undisputed rise in such accusations and the increasing public awareness of false cases (Face the Facts Radio 4 July 2001) Earl Howe, Shadow Spokesperson for Health in the House of Lords has tabled a debate on the issue on October 17th 2001.
For the public record, from the outset I have diplomatically raised my concerns to Government about the dangerousness of this accusation and the methods - to no avail.
I only feel saddened that what I said is being proven to be true.
Readers might like to consider the effects of the truly ignorant assumptions about autistic behaviours reflecting 'abuse' when these and other pearls of wisdom are 'taught' in ONE DAY seminars to ANYONE working with children and families with a credit card or cash. Think about that rumour effect when even play leaders are 'taught' to diagnose MSBP.
These types of seminars have occurred for some years now in the UK, but largely 'secret'. Now, thanks to the success of these early secret meetings and the validation of MSBP in secret courts and now Government documents, the MSBP theorist operates openly, their success providing them with a renewed vigour and sparkling self-confidence. Passing the tablets of stone over to other countries has been long associated with the UK, and we have usually been proud to admit that we have influenced other countries across the world.
Below is a quote from adverts for a forthcoming 'roadshow' in Australia and New Zealand on MSBP by a self styled US social worker, herself influenced by the UK
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experts during the nineties. She has just 10 years in social work, is only 'scheduled
'to receive her MA in Psychology ............................. later this year......................... but is considered an
international expert on MSBP who is 'cogent and compelling'. They usually are -that's part of the problem.
So sure now are these people that they can promise you that:
AFTER ONE DAY 'Participants will be able to:
Explain/ differentiate among factitious disorder, Munchausen Syndrome and MBP maltreatment
Recognise common MBP suspicion indicators
Explain MBP conflrmation/disconfirmation process basics
Explain the importance and role of a multi-agency/multi-disciplinary team throughout the MBP case process and will be able to state step (sic) in organising and planning an initial team meeting
Discuss how and when to interview(confront) the perpetrator for the first time after the MBP confirmation
Explain the activities and decision making regarding MBP victim out of home placement
Describe safe victim access and guidelines
Discuss key elements and activities involved in court preparation and presentation
Explain and recommend MBP case plan elements/activities to be completed prior to recommendation of unsupervised access or reunification
Explain the role of the mental health professional regarding MBP related cases, strategies for therapist selection and MBP related goals
Explain issues related to MBP case plan'
References
American Psychiatric Association. (1994) Diagnostic and statistical manual of
mental disorder. 4,h Edition.
Blakemore-Brown, L.C. (1998) 'False Illness or False Allegations? The Therapist,
Volume 5. No.2.
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Blakemore-Brown, L.C. (1997) 'Munchausen Syndrome by Proxy.' The
Psychologist. Letters. September.
Book, C.N., Neale. B.A. and Meadow, S.R. (1993) Follow-up of victims of
fabricated illness (Munchausen Syndrome by Proxy). Archives of Disease in
Childhood. 69: 625-630
Craig, S. (1980) Delphi Project. University of Auckland. New Zealand
Department of Health (2000b) 'Report of a review of the research framework in
North Staffordshire Hospital NHS Trust.' Department of Health. London.
Department of Health. (2001) 'Safeguarding Children in whom illness is fabricated
or induced by carers with parenting responsibilities'. A Consultation Draft.
2001. Department of Health. London. Responses by October 15th 2001.
Higham, P. (1998) 'Believing details known to have been suggested'. British Journal
of Psychology. 89 p. 265-284.
Howitt, D. (1992) Child Abuse Errors - when uood intentions no wrong. Harvester
Wheatsheaf
Jones, D.P.H. and Bools, C.N. (1999) 'Factitious Illness by Proxy.' In David, T.J.(ed) Recent Advances in Paediatrics. Livingstone. London. P57-71
Meadow, R. (1995) A talk. 'Munchausen Syndrome by proxy.' Medico Legal Society at the Royal Society of Medicine, Wimpole Streeet, London Wl. Thursday March 9,th.
Meadow, R. (1977)' Munchausen Syndrome by Proxy:the hinterland of child abuse.' Lancet.J/. 343 - 345...
Moore, S.J., Turnpenny, P., Quinn, A., Glover, S.,Lloyd, D.J., Montgomery, T. and Dean, J.C.S.(2000) 'A Clinical Study of 57 children with fetal anticonvulsant syndromes' Journal Medical Genetics 2000, 37: 489-497
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Abstract
AS Interactive is a multidisciplinary project comprising researchers from the University of Nottingham and the National Autistic Society. The main aim is to improve social skills amongst people with Autistic Spectrum Disorders (ASDs) using Virtual Reality Technology. At this early stage of the research, the first step is to see how people with ASDs use the technology. This paper outlines the rationale of the project and some preliminary results from a group of 13 pupils with ASDs aged 13-18 years. Participants had the opportunity to practice basic skills in a 'training' virtual environment, which was presented on a laptop computer and navigated with a joystick. Participants then used a Virtual Cafe in which they had to perform a number of simple tasks, such as finding a seat and ordering food from a menu. Initial observations suggest that participants in this group were motivated and extremely comfortable with the technology; they experienced few difficulties completing the required tasks. Participants also seemed to understand the virtual environment as a representation of reality. However, preliminary findings suggest that individuals with autism might lapse into infringing personal space in virtual environments.
Introduction
The name of the AS Interactive project reflects our target participants and the nature of our approach to developing social skills. That is, using new technology