Speaking out for Autism
Christina England
March 13, 2009
The main Convention, was backed by civil rights charity Liberty, the Guardian newspaper, Joseph Rowntree Trusts and the openDemocracy website - with support from a host of other civic organisations, including religion and society think-tank Ekklesia and took place at the Institute of Education in London.
There were also parallel Modern Liberty events in Belfast, Birmingham, Bristol, Cambridge, Cardiff, Glasgow and Manchester.
The Convention has grown over the years beyond anyones expectations and could be seen live on the Internet on the day.
On the Convention of Modern Liberty website it states:-
"The aim of the four-nation event, which crosses many political and social boundaries, was to galvanise opinion, analysis and action from the grassroots to challenge "attacks on fundamental freedoms under pressure from counter-terrorism, financial meltdown and the database state".
Many speakers from many walks of life took part to highlight issues of utmost importance that affects the basic human rights of many sub groups. I wish to highlight two of the speeches which were held in Glasgow and London.
Firstly Fiona Sinclair spoke in Scotland about 'Autism Rights'.
She spoke out about the legalisation and policy that was passed in Scotland that has had regressive effects she feels on the human rights of people with disabilities and their families particularly those with Autistic Spectrum Disorders.
She spoke of a failing system and how particularly adults with ASD are beginning to get confused and cross over with those who have mental health issues and very often are given psychiatric drugs to help cure their 'condition'. She said:-
"The experience of parents who have adult sons and daughters with ASD is of a system that has comprehensively failed them – and now seeks either to label behaviours that are autistic as those of someone who is mentally ill which require control by psychotropic drugs, or to use these drugs as a means of control in the absence of any appropriate care. These experiences are not confined to people with ASD, as Mencap's report on the routine use of these drugs to control people with learning disabilities amply demonstrated.
So, we now have legislation which further consolidates the use of psychotropic drugs to control people with ASD in the absence of any standards for the limited services that are provided for them. What we have to recognise as well is that these Community Treatment Orders, or CTOs, don't just apply to adults – they also apply to children. Autism Rights made submissions to both the SIGN committee (which drew up clinical guidelines on children with ASD for all medical and educational professionals in Scotland) and the Scottish Parliament's Health and Sport Committee's inquiry into mental health services for children and young people. Our latter submission provided fully referenced information on the highly toxic and even fatal effects of the drugs that the SIGN committee recommended for the `treatment` of children with ASD (even in preference to tried and tested dietary and nutritional interventions) and the fact that the full effects on the developing brains of children are completely unknown. It should be noted that both of these drugs - Ritalin and Risperidone - are also recommended for the `treatment` of children with ADHD – whether you consider this a catch-all label or a diagnosis."
Of course many children at present are not being given a diagnoses of ASD even when their symptoms are very obvious to outsiders. Parents are getting into a situation where some professionals agree that their child is on the spectrum where as others disagree. Sadly for a diagnoses to be accepted both sides need to agree. If not, the child's needs are not met and the agencies required to assist the family are denied to the family. I feel many children are denied the diagnoses of Autism because Governments are trying to hide the true numbers of children with Autism that now exist and also to avoid the expense of meeting their needs, which of course would be catastrophic.I feel however to diagnose children and adults who have Autism with mental health problems is disgusting, very convenient and also in my opinion little more than a ploy that covers up the real problem whilst peddling yet more drugs.
Fiona not only speaks of the dangers of giving children with ASD psychotic drugs but how the system fails these children educationally.She points out that most are lumped into already over crowded mainstream classes with little or no support from staff who understand the complexities of ASD. I totally agree with this having seen this happen not only to one of my own Autistic sons but also to many other friends children.She speaks of the vast numbers of exclusions which go on all the time to the many misunderstood, misdiagnosed and educationally neglected Autistic children.
She says:-
"Exclusions, in spite of disability discrimination legislation, are commonplace. `Secret exclusions`, where the parents reach an agreement with the local authority to keep their child at home because the emotional damage being done to their child is too great are common, as is part-time educational provision. Not many people will be aware that local authorities can actually fine a parent of a child that they have excluded for non-attendance at school. That gives a certain amount of leverage to a local authority."
She also speaks of Munchausen Syndrome by Proxy and speaks of Sir Roy Meadow and says:-
"The features of MSBP overlap with the internationally agreed clinical criteria for ASD. Initially, such accusations were made against parents who blamed the MMR vaccine for their child's autism. It is now routine to accuse parents of children with ASD of causing their child's problems if they don't put up and shut up with the services on offer."
All in all Fiona Sinclair speech was excellent and raised many important and crucial issues that do worry parents and I believe gave Autistic children everywhere and their parents a voice. showing that Autistic children do have rights.
To read Fiona's speech go to Modern Liberty One Click
The next speech I am going to discuss is that of Lisa Blakemore-Brown. Again an excellently delivered speech raising many similar issues to Fiona's.
Lisa's speech was entitled Distortion, Denial And Destruction New Labour Legacy For Children With Disabilities And Their Families
Lisa opened her speech speaking out about gross miscarriages of justice she has seen and in a particular a case she herself was involved in back in 1996.
She says:-
"Back in 1996 I was an Expert Witness in a Court case involving autistic spectrum hyperactive identical twin girls who had been born at 26 weeks gestation in 1984. The behaviour of the twins, one in particular, was so difficult for the mother to manage especially with two other younger children, that she threatened to sue the authorities if they had missed the nature of the twins´ problem. This triggered an allegation of Munchausen Syndrome by Proxy (MSBP) – that she was fabricating or inducing the children´s behaviours/illnesses. What became clear to me was that Social workers, the Court and other professionals were being groomed by perverted logic to see real disorders and symptoms of real illness as child abuse. Henry Porter has just written an example of exactly what I saw starting to happen all those years ago and was unable to stop. "
She also speaks of another expert witness involved in the same case Dr David Southall who said that these twins were perfectly normal, she felt very strongly that this was not the case and this increasingly worried her.She also worried as she saw the theory of MSBP spreading very quickly. Lisa describes how she viewed the twins situation saying:-
"The two youngest children were indeed perfectly normal, as they had been born at the expected time and did not suffer from the health problems experienced by their very premature older sisters. The Social Worker response to this was that the young ones would turn out the same as the older ones if they stayed with their mother! This was of course impossible. These children were rapidly put up for adoption. When I mentioned my deepening concerns about all this to someone in the new Labour Government I was told "You need to know Tony´s position on adoption". As we were to discover, Tony Blair was very keen to increase the number of adoptions of children in care and to help achieve this goal, social work departments were paid bonuses depending on how many adoptions they could deliver. Such speedy fast tracking for desperate children in appalling homes previously stuck for many years in care is of course commendable, but what if the parents were innocent and the children wrongly taken? They would never go home again. How would this affect those children for the rest of their lives? The more I saw within the Social Services and Court system, even the educational system caught up in the hysteria, and the more shocked and sickened I became. It felt like fascism. My colleague, Charles Pragnell, Independent Consultant Social Worker, saw the same thing developing. He said to me one day "Lisa, this is you and me".
Later Lisa was asked to take part in films about this case in NZ and despite being very ill with Breast Cancer she agreed.
She continued her speech speaking about how she was a witness at the Griffiths enquiry involving many aspects of Dr Southall's work including his theories of MSBP. She explains how this led on to the Government being advised that a Working Party was needed to ensure the correct identification of MSBP but how this failed leading to the writing up of the Consensus Report
Her speech continued to highlight many issues, including how she wrote many letters to the British Government about her growing fears and how she was ignored.She spoke of how several attempts to silence her manifested themselves in the form of farcical complaints to her then Governing body the British Psychological Society and how she lost her home in order to pay legal costs and how after winning each complaint she subsequently resigned from the society who instead of supporting her did nothing.
She, like Fiona spoke of how parents battle with local authorities to get the basic needs of their children met, especially the ones who believe vaccines were the cause of their children's Autism. She explains how some professionals have been so disgusted by the way our country treats children and families that they have left the country taking with them valuable skills and knowledge. This is the last thing parents need. I can quite understand their frustration but we need good professionals. We already have a failing health service and a failing social service system, losing many good professionals is causing such catastrophic shortfalls that we are needing to recruit untrained and inexperienced professionals from abroad in order to cope. This serves no one, least of the very children who need help and support.
Lisa speaks of children forcibly taken into care as a result of growing numbers of parents with sick and disabled children being falsely accused of MSBP saying:-
"For those who have been wrongly taken into care with real illness or disorders morphed into child abuse, we can only guess at how their lives progress without the understanding and support they need, but I was able to see both sides in the first case as I met the most damaged child when she turned 17. As she had been regarded as abused and perfectly normal, her bizarre behaviours, learning difficulties and poor co-ordination were seen as a result of the "abuse". No-one could change that by putting her in a "good home" because that wasn´t the reason for her problems. So extraordinary methods were put in place to rid her of her "demons". These included real abuse such as swinging her from trees, throwing her downstairs and smashing her fingers in a door. Other forms of abuse were suspected and eventually the child was placed with another foster parent – but only after she ran away many times. The Police were never informed by Social Workers about this abuse in care. When l informed them they did nothing."
Lisa went on to reveal what we have been reading about recently in the media, how vaccine damage and adverse reactions have been covered up for years in secret meetings of the JVCI and how key professionals who took part in those meetings as far back as 1980's and despite knowing about the adverse reactions they are being used as Expert Witnesses in cases and swearing blind that vaccines did not play are a part in a child's disability,injury or death. This to me raises issues as Conflicts of Interest.The professionals involved are Dr David Salisbury, Prof Sir Roy Meadow and Dr Liz Miller.
JVCI Meetings
Lisa feels naturally shocked and outraged by this, particularly as Sally Clark was convicted for killing her children who died hours after a vaccines and the expert witness was none other the Prof Sir Roy Meadow.
She says
"Of course Drs David Southall and Meadow are well known for promoting MSBP with Professor Sir Roy Meadow being the architect of the distorted theory. To find him in a Committee in which adverse reactions to vaccinations were openly discussed with specific case details – especially as many of the so called symptoms of child abuse could be adverse reactions to vaccines - was shocking.
The profoundly worrying implications are that powerful medics have been aware of adverse reactions and have ensured, through Government crossing of boundaries, that public health, social work , legal and education policy and training has distorted thinking and put in place draconian measures to blame parents and deny many children´s illnesses, and in some cases children´s deaths. In the Sally Clark case, questions have been raised as to why all the lawyers were told not to raise vaccine issues even though one of the children had been vaccinated just hours earlier. I recall in that very first MSBP case wondering why a "cot death" specialist (Dr Southall) was swimming in my sea – ASD and hyperactivity. Of course if children react to a vaccine but survive, it is not surprising that gradually over time other problems could emerge linked to that adverse reaction. See What killed Sally Clark´s child? Neville Hodgkinson asks why the jury in the Sally Clark trial was told to discount the DTP jab given to her second child, Harry, just five hours before he was found dead. Neville Hodgkinson, The Spectator 16th May 2007,
I am aware of a number of parents whose children reacted to vaccine who were subsequently wrongly blamed for the adverse reaction instead of admitting that this was iatrogenic abuse not child abuse. Professors Sir Roy Meadow and David Southall were involved with a number of them."
As I showed a few days ago and Lisa has said in this Convention many of the professionals involved have been found have to have links to the Pharmaceutical industries
Lisa finishes her excellent speech by explaining that many adults with Aspergers and ADHD end up without their needs being met and going through the prison services and gives examples of this,one being an adult misdiagnosed with a mental illness and who has been the high security prison Broadmoore for the past 13 years.
She says:-
"If the system fails to admit why children are ill/suffer from disorders, or even that they have the illnesses and disorders, these children will not be supported through appropriate health and educational support and can so easily become those on the streets with the ASBO´S, the knives and getting hit by Tasers etc. Any workers involved with children in trouble need to establish if they have an ASD condition."
I think both Fiona Sinclair and Lisa Blakemore-Brown should be applauded on their immense courage and bravery.Standing up and speaking out against Governments who for years now have covered up and ignored the disabilities of so many of our children is not easy and shows that there are still a few brave and dedicated people out there who do care.
Many issues brought up in these speeches certainly struck a chord for me having two sons who are now adults both with ASD who have been overlooked and had needs ignored for years. I do worry as I am sure many reading this do that one in particular will enter the mental health system because of his unusual and 'strange' behaviour. Like the parents refereed to in their speeches I have had fights with education systems, failed tribunals, false accusations but despite this I have two remarkable special children who I will continue to fight for daily.
When will professionals like Lisa and parents like Fiona be listened to? When will groups like the Age of Autism, J.A.B.S and One Click all valuable Internet sites be taken seriously and when will the Governments sit up and take notice of all of us? Our children need help now and so do the families and carers. MSBP allegations is not an answer ,it's a convenient get out clause for professionals to ignore the problems and blame the parent.
Looking back over the last decade we have never moved on from Kanner Autism theories of 'Cold Parenting'. Its time to move on, now!
I wish to personally thank Fiona Sinclair and Lisa Blakemore-Brown for all their efforts and urge them to carry on their good and valuable work which gives the silent world of Autism a voice.