PARENTS PROTECTING CHILDREN UK

In February 2008 the Daily Mail gave away the disc of the 2002 Meryl Streep Film “First Do No Harm” made in conjunction with the Johns Hopkins Hospital, Baltimore, USA. The title is taken from the Hippocratic Oath sworn by all doctors on completion of their training. The character played by Ms Streep fights to sort out the medical care of her increasingly ill son. When it is clear that the current plan is failing, she does her own research and comes up with an alternative, which might give her son a chance. The professionals close ranks against her and she is told that “there has been a meeting and” they believe that she is “loosing it” and they suggest that it would be better if she was divested of responsibility for her child.

This moment brings back memories of 1999, when my own son developed CFS/ME in the wake of bilateral pneumonia. The pneumonia had been missed because the GP practice had been too ready to assume a “snotty nosed kid” with an “over anxious mother”. Neither his school nor his GP practice had the faintest idea how to understand either his Asperger’s Syndrome or his Myalgic Encephomylitis (CFS/ME) so they were quick to call in Social Services and accuse me of “neglecting” to send a sick child to school. I was told that “there has been a meeting and” I found myself fighting to keep both my son and his young sister.

Political intervention (by an MP and a Councillor who actually knew the family) forced a professional climb down, but we were left shocked and scarred. The effects of still existent file notes etc has detrimentally affected both of my children’s education and health care but at least we are together as a family, My son is still fragile but increasingly successful as a musician, his sister also developed CFS/ME but nevertheless is headed for great things.

The fact that an older mother such as myself (a qualified special needs teacher with a post-graduate diploma in child development and extensive experience of management & training in voluntary sector children’s work), could be so misrepresented by the supposed experts; led me to search the internet for information and support. I made contact with other parents similarly misunderstood, other professionals struggling to support wrongly accused parents and with politicians who recognised that something was very wrong indeed and needed to be changed.

This led directly to the October 2001 House of Lords Debate where the Earl Howe, Lord Tim Clement Jones CBE, the Countess of Mar and others spoke about false & mistaken accusation of child abuse in cases of child or family illness and/or disability. Replying for the government Lord Hunt of Kings Heath appeared to promise sensitivity and careful consideration but sadly little came of this.
http://www.parents-protecting-children.org.uk/documents/Lords%20Hansard%2017%2010%2001%20(Full).doc
http://www.parents-protecting-children.org.uk/documents/Lords%20Hansard%2017%2010%2001%20(Cut).doc
In the wake of this debate and with the help of St Margaret’s URC Church, the organisation and website Parents Protecting Children UK (Parents, Professionals & Politicians, Protecting Children & families with Illness &/or Disabilities was formed.
http://www.parents-protecting-children.org.uk/
The website is sadly somewhat out of date as Revd John Alan Cox moved to a new church & I have been ill, but the documents section
http://www.parents-protecting-children.org.uk/documents.asp
is still a useful source of information and the support work continues – most recently through a link up with John Hemming MP and his organisation Justice for Families.
http://justiceforfamilies.freeforums.org/viewforum.php?f=8&topicdays=0&start=0
In the years since the formation of Parents Protecting Children UK we have had innumerable distressed phone calls and emails from parents to tell ask for help because “there has been a meeting and…”

In Autism & Asperger’s Syndrome
THE ROOT OF THE PROBLEM SEEMS TO BE….

I am not able at this time to comment on the whole plethora of children’s illnesses & disabilities (and family illness & disability including adult mental health issues) which lead to misunderstandings and false accusation of child abuse and inappropriate care proceedings, often with terrifying results (including wrongful adoptions). I will therefore concentrate on the condition known best to me – Autism & Asperger’s Syndrome – as not surprisingly it also features in a high percentage (probably the majority) of the cases known to me.
I would specifically like to comment on:

DEPARTMENT FOR CHILDREN, SCHOOLS AND FAMILIES
The Children Act 1989 Guidance and Regulations
Volume 1
Court Orders
A FRAMEWORK FOR THE CARE AND UPBRINGING OF CHILDREN
CHAPTER 1 INTRODUCTION
Child-centred welfare principles
1.12 In contested section 8 proceedings, special guardianship applications and in all care and supervision proceedings the court, when applying the welfare principle, should have regard to the following checklist of factors which focuses not only on the needs of the child but also on his views and the options available to the court:
(a) The ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding);
(b) His physical, emotional and educational needs;
(c) The likely effect on him of any change in his circumstances;
(d) His age, sex, background and any characteristics of his which the court considers relevant;
(e) Any harm which he has suffered or is at risk of suffering;
(f) how capable each of his parents and any other person in relation to whom the court considers the question to be relevant, is of meeting his needs;
(g) The range of powers available to the court under this Act in the proceedings in question.

This section 1.12 appears to me to be a massive area of potential downfall & difficulty in the case of children & young people with Asperger’s Syndrome & related difficulties

What I want to say here is a reiteration of evidence given to the Dept of Health by Parents Protecting Children UK and assorted other professionals & agencies in 2001, as evidence to the consultation on the MSBP/FII guidelines. The guidelines and the consultation process were flawed by the limited or non-existent understanding of Autism & Asperger’s Syndrome on the part of officials & elected representatives within the DoH.

This latest document:
DEPARTMENT FOR CHILDREN, SCHOOLS AND FAMILIES
The Children Act 1989 Guidance and Regulations
A FRAMEWORK FOR THE CARE AND UPBRINGING OF CHILDREN
Appears to be flawed for the very same reason.

This is the area of misunderstanding into which our family fell & which countless other cases that have come across my phone & email in the 9 years since have also fallen & continue to do so...
Significant harm to vulnerable children & families is being unwittingly done by Government, Courts, Schools & Social Service Departments; because they simply do not understand the nature of people with Autism & Asperger’s Syndrome.

My comments on Section 1.12 are as follows:

a) The ascertainable wishes and feelings of the child concerned (considered in the light of his or her age and understanding): Aspie kids are often highly intelligent but are invariably unable to articulate their own wishes & feelings in any way commensurate with their age or their intelligence.
b) His or her physical, emotional and educational needs: social workers are not trained to understand invisible disabilities such as A.S. so they haven’t got a clue how to understand the emotional needs of Aspie kids, they fail to realise that Aspie kids almost always have subtle minor but significant physical disabilities (e.g. can't chew, e.g. hypermobile joints etc) and they underestimate Aspie kids intelligence because of the poor articulation.
c) The likely effect on him or her of any change in his or her circumstances: Aspie kids are devastated by change & by stress - any change is likely to be counterproductive but the professionals just don't see it... they stress the kids out and then observe & report on the stress they have created without understanding that they have caused or contributed to the stress.
d) His or her age, sex, background and any characteristics of his or hers which the court considers relevant: the neuro-typical court doesn’t understand AS thinking so it can't take A.S. characteristics into account.
e) Any harm which he or she has suffered or is at risk of suffering: the NSPCC FULL STOP campaign etc has encouraged social workers teachers & the general public to see A.S. symptoms as symptoms of child abuse (e.g. failure to make eye contact or speak up for oneself) so the so called "professionals" get it wrong right from the start - if you start with a false premise you reach a false conclusion
f) How capable each of his or her parents and any other person in relation to whom the court considers the question to be relevant, is of meeting his or her needs: because an AS child or young person will tend to rely on one neuro typical parent or sibling as their conduit to communication with the NT world - there is likely to be one relationship which appears to some NTs as "overly close" and is open to be misconstrued by people with little or no understanding of AS - and because the parent or sibling who carries the responsibility of this “special relationship” is likely to be stressed, they are unlikely to take kindly to professional interference; therefore whilst fighting for the child’s needs they may well alienate the professionals who don't know how to understand A.S. and the family stresses created by A.S.
As far as I can see it these guidelines can do nothing to improve the situation for families with Aspie kids - who because nobody understands them are vastly over-represented amongst those wrongly assumed to be suffering abuse..
These problems will never be solved until there is proper training about A.S. - provided not by expensive book learned professionals - but by families & friends of people with A.S. who have first hand experience & understanding.

As far as I can see there are 3 main reasons why families with autism & Asperger's Syndrome find themselves in an unreal world of professional mistakes, misjudgements and misunderstandings:
1. Psychiatry & psychotherapy and hence medical & social work training has long been in the grip of the Freudians who by very definition cannot begin to understand Asperger's Syndrome - as there is no way that the neurological differences in Asperger's Syndrome can be controlled by psychoanalysis .... & recent therapies e.g. CBT also rely on the person being in control in a way that people with neurological difference cannot be in control – and probably wouldn’t want to be as it may well undermine the great creativity which many Asperger’s people contribute to society.
2. Our government & other western governments (with health care financially interlinked to the drug companies) are afraid of Asperger's Syndrome & Autism because of the potential legal liability & threat to the vaccination programme which would pertain if a link to vaccination really does exist - of course what they should have been doing is screening - the families likely to produce Autistic spectrum offspring (e.g. with a family history of auto immune disease) should be taken out of mass vaccination programmes
3. The panic about risk & liability in child protection cases which has become a growth industry in itself and has led to "guidelines" and "definitions" with insufficient subtlety to separate neurological difference from potential abuse.

© Jan Loxley Blount for Parents Protecting Children UK 18 & 24 02 08