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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.
COPY
PRIVATE EYE No
1108 11 June – 24 June 2004
After
years of campaigning by the parents of Piers Bolduc – a young man with
Asperger syndrome who was incorrectly diagnosed as schizophrenic and
incarcerated in Broadmoor – health chiefs have finally promised that moves are
in hand to secure his release.
Stephen
Ladyman, minister responsible for mental health, told Piers’ MP David
Lidington that he would ensure the 28-year old (who has spent nine years in the
special hospital for the criminally insane) was released as 2expeditiously as
possible”.
That was more than a month ago; since when inertia at the home office and department of health has meant that a precious place secured for Piers at The Hayes, a special centre in Bristol for those with Asperger’s (the high-achieving end of the autism spectrum) has gone to someone else. Thus Piers remains wrongly locked up for slightly wounding a young man with a penknife while taking powerful anti-psychotic drugs he should not have been prescribed.
Piers’
case, first highlighted in the Sunday Telegraph, is far from isolated.
Ladyman told the Commons that 31 people with autism, 21 of those with
Aspwer4ger’s, were held in three special hospitals.
But many more are inappropriately detained, sectioned under the mental
health act in secure psychiatric wards, hospitals, care homes and units for
those with learning disabilities having suffered misdiagnosis and inappropriate
treatment, often with powerful anti-psychotic drugs.
The
one positive aspect of Piers’ detention in Broadmoor was that his condition
was recognised and steps were taken to wean him off the drug cocktail that had
worsened his condition. The same
cannot be said for Matthew Thomas, now 43, who has been in and out of hospital
since he was 17.
Matthew
was sucked into the mental health system in 1978 when a breakdown during his
exams led, as with Piers, to the wrongful diagnosis. His parents, Jackie and Geoff Thomas, have been unable to get
their son out of the system.. Even
though Asperger’s was finally diagnosed nine years later, Matthew remained on
the cocktail of anti-psychotics, tranquillisers and anti-depressants he has
taken most of his life.
To
his parents Matthew had always appeared a 2bit different”.
But it was not until he was studying for his O levels that he suffered
what everyone thought was a mental breakdown.
He was taken in the Priory in Roehampton and was diagnosed as
schizophrenic. His parents, then
knowing nothing of Asperger syndrome, went along with the diagnosis.
It
led to two prolonged sessions of electro-convulsive therapy (ECT) and a cocktail
of powerful drugs – his parents list no fewer than 23 different ones in those
early years. As they watched their
son get worse, only one registrar dared challenge the diagnosis and suggest
Matthew’s schizophrenia was 2atypical”. His already sceptical parents read everything they could and
because convinced Matthew was not schizophrenic. They sent him to the US where the diagnosis was finally
overturned. Back in the UK a year
later at the Maudsley, has was officially diagnosed with Asperger’s and his
parents were told he “did not have one schizophrenic feature”.
Unlike
Piers, there has been no concerted effort to break Matthew’s addiction to
powerful drugs and today he lives in a psychiatric special unit in Wales.
“Matthew’s life was stolen at 17 and for us parents it has been like
a living bereavement,” said his mother.
Nick
Priechenfried was only 14 when he was given his first dose of anti-psychotic
drugs by a GP. Although another
doctor took him off them, the reprieve was short lived. Nick was correctly diagnosed with Asperger’s, but seven
years later he was still sectioned and diagnosed as schizophrenic and put on the
cocktail of psychiatric medicine his mother says wrecked his life.
He
ended up in the medium secure unit at Horton Hospital, Epson, with very ill and
disturbed patients. Even though
leading autism experts confirmed the diagnosis of Asperger’s, Nick’s
treatment with powerful anti-psychotics continued.
Following other disastrous placement, Nick eventually went to the Eric
Shepherd Unit in Hertfordshire. Three
years ago, psychiatrists there weaned him off all medication, resulting in a
huge improvement in both his mental and physical health.
As Nick says: “If you are put on anti-psychotics when you do not need
them, you soon develop a psychosis.”
What has happened to people like Piers, Matthew and Nick is nothing short of scandalous. But it is a simple message that they and their parents have been trying to convey to Stephen Ladyman and his fellow health chiefs. Not only is the continuing misdiagnosis, treatment and inappropriate placements for people with Asperger’s devastating for those involved, it actually costs millions. An investment in proper services now – particularly with the huge increase in children being diagnosed on the autistic spectrum – would save money in the future. Why isn’t the government listening?
