A tragic story of mis-understanding

Email me

Front Page 

NEW Carers Expert- By Experience sister site This site will be where you will find carers stories. It is new at the moment and will be added to shortly

ASPERGER SYNDROME ACTION by PARENTS (ASAP).

NEW: Website http://www.asap-online.co.uk

The stories on this page have been provided by ASPERGER SYNDROME ACTION by PARENTS (ASAP). ASAP is an informal group based in Ealing, West London.  Founded by Sally Priechenfried who has a 31-year-old son with Asperger Syndrome. The agenda is to enlighten parliamentarians and professionals on the dangers of misdiagnosis leading to the prescribing of inappropriate drugs and the desperate need for NHS services for adults with Asperger Syndrome.  My email address is aspergeraction@aol.com and I advise and help, as much as possible, families who have had the devastating problems we have had through my son's misdiagnosis.

Sally's Story Link to story

ASPERGER SYNDROME

Since this story was released Debbie Storey sadly died on 24th May 2005

Dear Sally,

As we are receiving messages from all over the Net about Debbie we have decided to begin a Condolence
Book. Ruth, one of our parents, has taken this over and is going to put all of the messages we receive
into a book for her Mum and her Husband. If you know anyone who would like to contribute then they can send
any messages to aim1voice@yahoo.co.uk  It is only a gesture but the members on the Campaign Group along
with those on the Home Educating Groups wanted to do something.

regards  Carole                         The Key to Understanding is Awareness

Dear All
Rosemarie and Jeff, Debbie's parents, Michael, Ben and Sam have asked me to send you this email.  They would like to thank everyone who has sent them such caring letters and cards, kind messages and beautiful flowers following their tragic loss.  They are all overwhelmed.
Many, many thanks and would those of you who who have them please put this message on your websites and email lists.
Debbie was truly a wonderful person and let us hope that this time lessons will be learned and the appropriate actions taken following this dreadful sequence of events.
God Bless Debbie
With best wishes to you all
- Sally Priechenfried
ASPERGER SYNDROME ACTION by PARENTS (AS

Debbie's Story

It is hard to envisage more ignorant or unsympathetic treatment by the "caring professions" than that meted out to the Storey family of Rayleigh, Essex.

Debbie Storey, 41, has Asperger Syndrome (AS), as do her sons Ben, 16, and Sam, 12.  AS is a form of autism where sufferers often have high IQs but lack social and communication skills.  This can be seen in apparently "odd" behaviour.

Results of blame and not listening:
Last year Ben and Sam were nearly taken into care because a therapist who had been visiting the Storey home decided - without being qualified to do so - that the children were being psychologically abused.  Nothing could have been further from the truth.  But a confidential report prepared for Essex social services concluded that Mr and Mrs Storey were "consciously or unconsciously using their children to meet their own needs."  They were summoned to a child protection conference and the boys were put on the "at risk" register for emotional abuse and neglect.

In what was subsequently found to be only one of a series of failures by the authorities, no input was sought from any expert on autism to throw more light on the condition of Mrs Storey and her sons.  Lisa Blakemore-Brown, a psychologist and expert on Asperger's, was so horrified by what was happening to the family she even gate-crashed a case conference to act as a family advocate. She found the intimidation of the family "absolutely unbelievable and unacceptable".

After a mammoth battle with Essex county council involving lawyers and various experts, Ben and Sam Storey were eventually removed from the "at risk" register last September.  But the year-long ordeal took an enormous toll on everyone, especially Mrs Storey.  In emails she revealed the depth of anxiety and desperation she felt throughout the period.  In March last year, for example, she wrote: "They are ripping my family to pieces and there isn't anyone who can intervene at a higher level and stop the damage this is doing to the children.

"Ben is really unwell with all the flu symptoms again that flare up when he is under immense stress..but thanks to the core group (those monitoring the children) we're too afraid to take him to a GP who has blatant disregard for experts and is totally ignorant to the needs of a family dealing with autism..This is spiralling out of control and I'm rapidly going with it."

But it was not just her mental health that was suffering.  According to Debbie's mother Rosemary, Debbie had been fatigued and feeling unwell for some time but was too fearful to go to the doctor lest this was interpreted as more "attention seeking behaviour" that could harm her chances of keeping the children.

She had complained of increased back pain in the middle of last year and in November was referred to the Royal Orthopaedic hospital for spine and hip investigations.  No cause for the pain could be found.  Instead, according
to Rosemary, questions were asked about whether Asperger's could have affected Debbie's perception of pain.

Later in November the pain was so bad it was frequently causing Debbie to vomit.  A GP at her practice prescribed slow-release morphine to ease the pain, but another GP took her off it.  At one stage she was in such pain she dialled 999 and was taken to casualty at Southend Hospital.  After two painkilling injections she was sent home.  But she was then readmitted to hospital by her GP when blood tests revealed worryingly low levels of haemoglobin.  Again she was discharged.

It was only in March of this year that, on mother Rosemary's suggestion, Debbie was seen by the consultant who was treating her brother for a rare renal cancer.  It turned out that Debbie's "perception" of pain was all too horribly real.  She too was diagnosed with rare renal cancer, only hers had spread to other parts of her body.

While her husband Michael now cares for Ben and Sam, Debbie is being nursed by her parents and awaiting an operation to remove a kidney on 4 May 2005.

Because she is so seriously ill, an advocate from Mencap has written to the respective health authorities, the Southend Hospital NHS trust and Castle Point Health Trust, to question and complain about her treatment.  But Lisa Blakemore-Brown has no doubt that the labels attached in ignorance to Debbie and her family over the years mean she has not received the kind of treatment and care she needed when she needed it.  "What has happened to Debbie and her family should not be ignored.  We have seen over the last seven years more and more cases of parents being wrongly blamed and their real needs ignored. In this case a completely unqualified person set a rumour running that then permeated the entire health, education and social work systems, blinding the professionals.  This resulted in no support for the children, no recognition of their condition - and a mother fighting for her life.

From: AspergerAction@aol.com                        PRIVATE EYE  Issue No:1131