| Presenter: There is still an enormous
amount of confusion and ignorance about the range of conditions
known as autism. Take Asperger's syndrome, which some
would say isn't an illness at all but just people displaying
unusual forms of behaviour. But one thing experts are
pretty certain about, though, is that autism and the related
conditions of Asperger's syndrome can't be treated with
anti-psychotic drugs. Yet in a disturbing number of cases
we have heard about it's claimed that Asperger's patients
are being prescribed this type of medication, either because
they've been misdiagnosed or because their diagnosis is
not being accepted by the psychiatrist treating them.
Historically there was thought to be a strong connection
between autistic behaviour and schizophrenia, a condition
where drug treatment can be very beneficial, but this
link has now been rejected. However, A.P.A.N.A. (Autistic
People Against Neuroleptic Abuse), a pressure group which
is campaigning against the use of drugs to treat Asperger's
patients, believes some psychiatrists are ignorant of
this modern thinking. Peter White has been talking to
Maureen Eldred who is convinced that her daughter is being
treated in the wrong way and for a condition that she
Maureen Eldred: (reading her letter): "Dear
Professor Appleby, Autism is NOT a mental illness and
if treated as such, with inappropriately prescribed
cocktails of dangerously addictive drugs, as in my own
daughter's and innumerable other cases..."
Peter White: This letter, to the Government's
so-called "Mental Health Czar", is one of
many Mrs. Eldred has written to draw attention to what
she believes is the inappropriate treatment being given
to her daughter. Despite being a withdrawn and rather
troubled child, she had successfully held down a job
for ten years, but after a sudden change of circumstances
(she left home and bought a house) she began behaving
erratically; but her mother thinks that despite the
evidence given to them, the profession misinterpreted
Maureen Eldred: The actual letter she wrote
to the psychologist had all the clues in it, which anyone
who is an expert in Asperger's syndrome would have picked
up immediately. She explained how she had always been
very anxious at school, how she'd hated it; she couldn't
cope with the other children; didn't know how to mix.
The psychiatrist she was eventually sent to see hadn't
got the training to recognize the symptoms and he diagnosed
her as not being mentally or physically ill, in spite
of which he started her on anti-psychotic drugs.
Peter White: Maureen Eldred claims that the
drugs prescribed caused a major deterioration in her
daughter's health, and triggered behaviour which has
on three occasions - the latest only recently - led
to her being detained under The Mental Health Act. She
also claims that a subsequent diagnosis of Asperger's
syndrome, obtained privately, has been ignored and inappropriate
drugs have continued to be given.
Maureen Eldred: She used to be a very quiet
person; a person who'd fade into the background because
she didn't like to be the centre of attention. Since
taking these terrible drugs she's completely changed
- she's very loud, disinhibited; she's 6 stones overweight;
she doesn't care about her appearance; she says she's
Peter White: Hillington Hospital NHS Trust won't
discuss this individual case. They invoke "Patient
Confidentiality." They say they are sorry Mrs.
Eldred is unhappy with the treatment given to her daughter
and that they will be meeting her to discuss how her
concerns can be resolved. But this is not an isolated
case. Dr. Judith Gould of the NAS (National Autistic
Society) runs a diagnostic unit:-
Dr. Judith Gould: We certainly have referrals
to our Diagnostic Centre as part of the NAS where there
are people who have a diagnosis of schizophrenia and
very clearly this is an incorrect diagnosis and they
do have Asperger's syndrome. So it is something that
is happening, I think still quite frequently.
Peter White: This view is confirmed by Paul
Shattock who runs the Autism Research Unit at Sunderland
University. He acknowledges that there is sometimes
a complex mix of psychological problems, which can make
a diagnosis difficult.
Paul Shattock: One has to say that in people
with Asperger's syndrome or autism there is no reason
why you shouldn't have some sort of psychotic state
superimposed on top of that. It does happen. Often the
medications that are required to treat schizophrenia
are completely and utterly one hundred per cent opposite
to those required to treat Asperger's syndrome. For
example, you might have one drug, which inhibits dopamine
production or dopamine transmission in schizophrenia,
which is appropriate, but in the case of Asperger's
syndrome it is completely wrong. There is already evidence
of insufficient dopamine transmission in people with
Asperger's syndrome so the medication will, in fact,
make the underlying Asperger's syndrome worse rather
Peter White: Wendy Lawson thinks her case is
a classic illustration of this. Because of what was
regarded as "odd" behaviour - twitching; talking
to herself - she was sent to a psychiatrist when she
was 17. This was over 30 years ago; before Asperger's
was widely recognized. She described to me the interview
which led to her diagnosis:-
Wendy Lawson: "Wendy. Do you hear voices?",
which I said 'Yes' to because, obviously, people who
can hear - that's what voices are for. So I said, 'Yes',
being very literal in my understanding. He asked me
also if I 'see things' and I said, "Yes, I do have
an eyesight problem. I only have sight in one eye but
I still see things." He then formed a conclusion
that I was detached from reality and that I had auditory
and visual hallucinations which equates to schizophrenia.
Peter White: What she had done is to exhibit
typical Asperger's behaviour; taking his questions absolutely
literally. But as a result she was sent to a psychiatric
hospital and over the years given a cocktail of anti-psychotic
drugs which have given her a range of unpleasant physical
and mental effects. It wasn't until 25 years later that
she was re-diagnosed "Asperger's." She is
now married. She has 4 children and is a social worker
but the effect of this misdiagnosis on her life has
Wendy Lawson: Well, it stole many years from
me. Some people have died because of misdiagnosis. Some
people have lost their lives completely, literally.
Others have just given up and fallen into the system.
Many probably walk our streets.
Peter White: But with our increased knowledge
of Asperger's, why are these cases still happening?
And why do they take so long to resolve?
Dr. Judith Gould thinks it's because the profession
often isn't prepared to listen to the right people:-
Dr. Judith Gould: Unfortunately, when we are
talking about adults the view is that it is not politically
correct to be seeing them as the child of the parents.
Quite often the parents really understand and would
be able to advocate very appropriately for their offspring,
but this is always the problem that parents are not
Maureen Eldred: People like my daughter become
trapped in the Mental Health system because there's
not enough training in Asperger's syndrome among doctors,
psychiatrists, and so people like my daughter lose their
lives quite literally. She has no quality of life. She's
just a "THING" that they keep throwing drugs
at, at the moment.
Presenter: Maureen Eldred ending that report
from Peter White.
Joining me:- James Mackie, a prospective Conservative
MSP (Member of the Scottish Parliament), who is campaigning
on behalf of a number of Asperger's patients and their
relatives; and Dr. Tom Harrison, a Rehabilitation Psychiatrist
in South Birmingham.
Dr. Harrison - Firstly, do you accept that cases of
misdiagnosis are still happening?
Dr. Tom Harrison: I think, quite clearly, a
number of cases have been missed and there is a number
of reasons for that. I work in rehabilitation psychiatry
and see a number of people whose diagnosis has been
Presenter: And why is that happening? Because
it is so complex?
Dr. Tom Harrison: I think it's partly because
it's so complex. I mean, it's become known to psychiatrists
more widely in the last 10 years and it's still something
of an unusual experience for most psychiatrists. I mean,
it's very unlikely that many adult psychiatrists will
see a case of autism or Asperger's syndrome that hasn't
already been diagnosed.
Presenter: And yet we heard there that the effect
of misdiagnosis can be profound. Some people have even
lost their lives!
Dr. Tom Harrison: Oh! I mean, I think that's
absolutely unquestioned that it's a disaster; both the
lack of diagnosis and the effects on the family when
things aren't recognized and the appropriate things
are put into place.
Presenter: James Mackie - How many cases like
this do you know about?
James Mackie: Personally, over two dozen and
that's across both Scotland and England.
Presenter: And why do you think the psychiatric
profession is getting it wrong so often?
James Mackie: Unfortunately, most of the psychiatrists
come across as being very arrogant and are perceived
as being "Gods in white coats", and despite
other professionals giving their opinion that these
people do have an Autistic Spectrum Disorder, and the
parents who are the experts in every individual case
are just totally ignored.
Presenter: Dr. Harrison - Are you arrogant?
I mean, why don't you listen to parents and other people
who know about Asperger's? Maureen Eldred said she could
SEE her daughter's health was deteriorating when she
was put on these anti-psychotic drugs! Why don't you
listen to the experts - the people who live with the
Dr. Tom Harrison: Personally, I'm very lucky.
I have a very specialized job in Rehabilitation Psychiatry
where I have much more time and am perhaps more sensitised
to people with Asperger's syndrome, in the sense that
I have now seen probably 20 myself that I have picked
up as cases that have been referred to me by my colleagues.
Presenter: But do you listen to carers, Dr.
Harrison? Do you listen to parents?
Dr. Tom Harrison: One of the things I have the
time to do is to be able to sit down with parents and
spend quite a long time taking the history about what
has happened to the child, the person, in the past -
their children in the past - where I can, though I have
a number of people whose parents I have not been able
to contact because they have been isolated.
James Mackie: It's not an excuse that they don't
have time. A psychiatrist normally sees a patient on
a ward once a week for about 10-15 minutes if the patient
is lucky. And it's not only the parents that they're
ignoring - there's other professionals. I know of one
in Scotland, a Neuro-Psychologist, who is recognized
as being the expert in autism in Scotland, and on a
number of occasions - very many occasions - when he
has given his diagnosis and it's been handed on to a
psychiatrist, the psychiatrist has totally ignored it.
The psychiatrist on the ward has taken all his information
from his ward staff. They are not trained in autism
and, unfortunately, many of the traits of autism are
similar to schizophrenia, so if you have got ward staff
who are trained just to observe purely schizophrenia,
that is all they will see and that is all they will
report back to the psychiatrist.
Presenter: Dr. Harrison - Is there a need for
better training amongst psychiatrists, so Asperger's
sufferers won't be seen as "things you throw drugs
at," as Maureen Eldred said.
Dr. Tom Harrison: I mean, I think unquestionably
that - er - I personally think there probably needs
to be more specialists who are aware of Asperger's.
The whole way of working with someone with Asperger's
is entirely different to working with people with schizophrenia,
and - er, I mean - I have to dispute Mr. Mackie's view
that people haven't got time. My colleagues have often
300 or 400 patients to see with lots of new cases coming
in every week. It is very difficult because the time
you have to take to work with someone with Asperger's
is a long period of working with time, and I've seen
a number and I've been lucky to have the opportunity
to be able to spend that time.
Presenter: Dr. Tom Harrison and James Mackie
- Thank you both.