While I am posting this to the list, I want to say in my own defence, unlike
Colin and others on the AS spectrum who have behavioural and inter
relationship difficulties. I do not. Anyone who knows me will know that i live in an
inclusive community with excellent support systems, a good personal assistance
package and good friends around me. All of this is about connecting! What I do
have is perceived 'radical' thinking in which many negative assumptions are
made about me because of the cultural style of the internet. Yes I have
Aspergers Syndrome and no I am not involved in any underworld or sub cultural stuff.
Now that was a funny. I live a clean living type of lifestyle :-) Pretty
boring really. There are people on the internet with the most impeccable
mainstream manners and charm and would you beleive they are the ones who are involved
in seedy sub-cultures, hey, ho, how aobut that.
Please spare me any further patronisation. Disability Politics - most people
don't know the meaning of the word.
What was that saying again, if you are nondisabled and have a different
thinking you get called a professor but if you are disabled and have a different
thinking you get labelled mad! How about that?
Date: Fri Sep 19, 2003 1:30 am
Subject: Mrs Angela Browning and Stephen Ladyman's speech in Parliment on
10/9/03 on Aspergers Syndrome and Autistic Spectrum Disorders
10 Sept 2003 : Column 437
Asperger's Syndrome
Motion made, and Question proposed, That this House do now adjourn.-[Joan
Ryan.]
7.15 pm
Mrs. Angela Browning (Tiverton and Honiton): On 23 October 2001, I
introduced an Adjournment debate on Asperger's syndrome and autistic
spectrum disorder. I am delighted that the Under-Secretary of State for
Health, the hon. Member for South Thanet (Dr. Ladyman), is on the Treasury
Bench, as he also attended that debate. At the time, he was chairman of the
all-party group on autism and I cannot think of a better person, one with as
much experience and knowledge of the subject, to respond to the debate.
I want to move on from that debate in 2001 and focus especially on
Asperger's syndrome and mental health services. Although many symptoms of
autism are present in people diagnosed with Asperger's, there is a
difference, as such people generally have good language skills and may be of
average or high intelligence. However, they demonstrate many of the traits
associated with autism, which results in communication problems and,
sometimes, ritualistic behaviour. They can experience difficulty in social
relationships, causing a sense of isolation, especially in adolescents and
adults.
Too few appropriate packages of support are available and they can often be
obtained only when there is a crisis. However, where health and social
services work together, especially with agencies that specialise in the
management of autism, the results can be good, not least because stress and
anxiety are reduced, thus reducing the patient's mental health needs and an
unacceptably high suicide rate among that group.
Although the causes of Asperger's syndrome and autism have yet to be
positively identified, research to date shows that they are related to a
physical dysfunction of the brain that may have more than one cause,
including a genetic base. What Asperger's is not is an illness, nor are the
behavioural symptoms exhibited by people with the syndrome caused by
psychosis.
Management of the condition is best addressed by individually tailored
packages of support. They will not cure the condition-it is lifelong-but
they will vastly improve the quality of life for the sufferer and maximise
their opportunities for living independently. We are talking about a
vulnerable group of people, who have a strange mix of abilities, which can
mask characteristics that may include obsessive behaviour and lack of
imagination, resulting in their not being streetwise, yet can be coupled
with a range of educational abilities, up to degree level and beyond.
Behaviour may be challenging, especially if routines are interrupted or the
individual is faced with unexpected changes, such as a break with a familiar
environment or people. People with the condition can be quirky at best and,
at worst, threatening to those who are not familiar with their behaviour.
Such behaviour is almost always triggered by events rather than an emotional
response. It is in that context that I shall focus on adults and adolescents
who, under stress and perhaps presenting strange or challenging behaviour,
find themselves in contact with mental health services, especially
in-patient treatment.
10 Sept 2003 : Column 438
It is true, of course, that people with Asperger's can become mentally ill,
as with any other person. Indeed, depression is particularly common in that
group. As I pointed out in my debate in 2001, apart from any physiological
reason, such as low serotonin levels in the body, it is not rocket science
to understand why, by adulthood, people with Asperger's syndrome-desperate
for the social and employment opportunities in which they see their peer
group participating, but finding themselves friendless, locked out and
socially isolated because of their inability to relate to other people-start
to become depressed and demonstrate behaviour that, frankly, is quite
obvious to those who study the condition and understand it. Who among us
would not become depressed if we had tried so hard, as many with Asperger's
do, to normalise-for want of a better word-our behaviour only to find that
we cannot break through the glass wall that divides us from the rest of
society?
Given my work with autism charities and in assisting those who seek to
improve the lives of those in the Asperger's group, I feel prompted to raise
the issue again in the House because of the pattern of treatment that has
clearly developed throughout this country, particularly in provincial mental
health hospitals. Very few provincial psychiatrists have been trained in
either the diagnosis or management of Asperger's syndrome and even fewer
have gained the experience, as part of their working lives, to be able to
differentiate between a mental health condition and what many of us regard
as normal autistic behaviour, which even professional psychiatrists may well
interpret as something quite different.
A level of expertise is required. For example, if someone with Asperger's
develops symptoms of schizophrenia, very few psychiatrists in this country
have the expertise to differentiate between autistic symptoms and a genuine
case of schizophrenia. Yet, day after day, people with Asperger's syndrome
are admitted to mental health hospitals and find themselves being diagnosed
and treated by people with that lack of experience. So they fall foul-I use
that phrase quite deliberately-of the mental health services, as
in-patients. They are often sectioned under existing mental health
legislation.
All too frequently around the country, we find that those in that group are
being treated in a way that would not be tolerated in any other part of
health care. It is all too common for psychiatrists even to ignore an
existing diagnosis of Asperger's syndrome. That is astonishing. One
professional has made a diagnosis, yet all too often another professional,
who is responsible for caring for the person with Asperger's, refuses to
accept the diagnosis. Behavioural symptoms are not recognised as normal
autistic behaviour. They are often treated with strong drugs that have
little or no effect on the symptoms, but in themselves cause yet another
problem for those with Asperger's. When a drug does not work, psychiatrists
work their way through the prescribing lists, building a cocktail of
medication that fails to address the symptoms. Why should it address the
symptoms if the underlying cause is physiological?
It is common for people with Asperger's to be misdiagnosed as schizophrenic
and given medication on that basis. Many of those cases result in long
hospital stays, with all the damage of long-term neuroleptic
10 Sept 2003 : Column 439
drugs, the effect of which needs to be addressed. I know that I need not
emphasise this to the Minister, but those are not isolated cases. The
problem is becoming increasingly common, even in the casework that Members
of Parliament have to take up on behalf of our constituents. The Minister
will be aware that we have held meetings in the House with the carers of
people who have been treated in that way, so we know of the absolute
distress and pressure on those carers.
10 Sept 2003 : Column 439-continued
Liz Blackman (Erewash): Does not what the hon. Lady is saying point to the
fundamental requirement for multi-disciplinary teams to be set up early for
autistic young people, including those with Asperger's syndrome?
Mrs. Browning: The hon. Lady has a great deal of knowledge and experience of
this subject, and I agree with her. It is necessary for the
professionals-the multidisciplinary teams that she talks about-to become
actively involved at an early stage in the management of the case. If that
worked everywhere-it works in some places-we would not see so many of these
people coming under the auspices of the mental health services in the first
place.
When those carers try to make representations and to be advocates on behalf
of their adult children or-if they are not relatives-on behalf of the
in-patient, the health professionals all too often simply will not listen to
them. The House will be aware of a high-profile case that has gone to court
and is still pending-R v. Bournewood Community and Mental Health NHS trust.
I have the carers' permission to quote their experience. They told me
personally that when they tried to become involved, they were described by
the psychiatrist as "unco-operative". When they pressed further, the term
"abusive" was applied to describe them as carers. Finally, when, at their
wits' end, they tried to explain to these so-called professionals how this
person actually behaved because of his autism, it was suggested that they
had mental health problems themselves. That is outrageous. Their knowledge
of the individual concerned and the way that he behaved was key to his
management and treatment, yet it was not wanted by the psychiatrist. That is
an example of arrogance-not of all psychiatrists, as we could all name some
who are doing a jolly good job in this area-that should not be tolerated.
Most of the damage done to in-patients will occur in the first four to six
weeks, through a combination of inappropriate medication, finding themselves
in an environment that exacerbates their difficulties in managing their
behaviour, and through carers and parents being resisted by professionals
and given the minimum amount of access. That cannot be tolerated. I
therefore urge the Minister to introduce the following measures as a matter
of urgency.
First, unless a psychiatrist has received an accredited training course and
has a recognised working knowledge of the treatment of Asperger's syndrome
and autism, a second opinion on the treatment and management of that
individual patient must be sought from another professional who has that
expertise as an input to the case. Secondly, the Department of Health should
set up an immediate investigation into the number of adolescents and adults
with an Asperger's syndrome diagnosis who have also been treated for
10 Sept 2003 : Column 440
schizophrenia, as we should know how many of these people are being
misdiagnosed and mismedicated. When an undiagnosed adult is suspected of
having Asperger's syndrome, a referral must be made to a professional who
has experience of autism. Diagnosis of adults cannot be learned from a
textbook. It takes years of work. It is much more complex than the diagnosis
of children, and there are people who have reached their 20s, 30s, 40s and
even 50s before being diagnosed, as other factors must be looked for. That
requires a huge level of expertise.
Paul Flynn (Newport, West): I congratulate the hon. Lady on securing this
debate on an important subject. The doubts that she has raised about the
effects of neuroleptic drugs have been experienced by a large number of
people in residential homes for the elderly and by many women in prison.
Will a call for such an investigation include a general investigation of the
effects of neuroleptic drugs among many other people?
Mrs. Browning: I would not disagree with that at all. We all have concern
about this area, and we would like to know much more about it. I know that
the hon. Gentleman has knowledge of this area, and I would certainly like to
know more.
On my list of what I would like the Minister urgently to consider is the
requirement for all primary care trusts to identify their autism and
Asperger's professionals for in-patient care and community care-from
community psychiatric nurse level to consultants in hospitals-and to
implement a structured training and accreditation programme. They should
also draw up a referral list, even if it is out of area, so that those
people who do not have the expertise know of a professional on whom they can
call for case-by-case referral.
If I need an operation for a broken leg, I would expect an orthopaedic
surgeon to deal with it. If I were admitted to hospital with an existing
heart condition, I would not expect to be medicated for some other
condition. It seems that psychiatrists are laws unto themselves. There is an
ignorance and an arrogance that permeates their approach to Asperger's
syndrome that is all too common.
In the advice to carers, many of us who are involved in dealing with
individual casework, including Members, are not prepared to accept the
status quo. It is becoming more common for cases to be tested in the courts.
I believe that many more cases will be so tested if the situation is allowed
to continue. It is criminal.
I have many files of heart-rending casework. I will not quote from them
because I know that those Members who are in their places will have had to
deal with such casework in their constituencies. I know that they will
understand the heartbreak for the individual and their carers when they come
up against a system that treats them in this way. It is leading to family
breakdown, where increasingly ageing parents and carers bear the strain of
lack of provision, of failure to diagnose or even a failure to recognise
diagnosis on the part of other professionals. In some cases, this has led to
permanent damage caused by inappropriate medication.
10 Sept 2003 : Column 441
I can think of no other area of health care where this situation would be
permitted. These patients are the least able to self-advocate, yet the
people who could advocate for them-their immediate carers-are sidelined. It
is cruel and it is unjust, and it must stop.
7.32 pm
The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman):
It is a great pleasure for me-I know that Ministers always say that when
they come to the Dispatch Box to respond to Adjournment debates, but on this
occasion it is truer than usual-to respond and to congratulate the hon.
Member for Tiverton and Honiton (Mrs. Browning) on raising the issue again.
I know that we are not allowed to refer to Opposition Members as right hon.
or hon. Friends, but on this subject I would like to think of the hon. Lady
in that way. She has made many constructive suggestions, while speaking with
much feeling and compassion.
Becoming a Minister was a joy for me. The one thing that I regretted,
however, was that I had to give up chairing the all-party group on autism.
The only consolation is that my hon. Friend the Member for Erewash (Liz
Blackman) has agreed to take over. I look forward to working with her and
the rest of the group in my new capacity.
10 Sept 2003 : Column 439-continued
Liz Blackman (Erewash): Does not what the hon. Lady is saying point to the
fundamental requirement for multi-disciplinary teams to be set up early for
autistic young people, including those with Asperger's syndrome?
Mrs. Browning: The hon. Lady has a great deal of knowledge and experience of
this subject, and I agree with her. It is necessary for the
professionals-the multidisciplinary teams that she talks about-to become
actively involved at an early stage in the management of the case. If that
worked everywhere-it works in some places-we would not see so many of these
people coming under the auspices of the mental health services in the first
place.
When those carers try to make representations and to be advocates on behalf
of their adult children or-if they are not relatives-on behalf of the
in-patient, the health professionals all too often simply will not listen to
them. The House will be aware of a high-profile case that has gone to court
and is still pending-R v. Bournewood Community and Mental Health NHS trust.
I have the carers' permission to quote their experience. They told me
personally that when they tried to become involved, they were described by
the psychiatrist as "unco-operative". When they pressed further, the term
"abusive" was applied to describe them as carers. Finally, when, at their
wits' end, they tried to explain to these so-called professionals how this
person actually behaved because of his autism, it was suggested that they
had mental health problems themselves. That is outrageous. Their knowledge
of the individual concerned and the way that he behaved was key to his
management and treatment, yet it was not wanted by the psychiatrist. That is
an example of arrogance-not of all psychiatrists, as we could all name some
who are doing a jolly good job in this area-that should not be tolerated.
Most of the damage done to in-patients will occur in the first four to six
weeks, through a combination of inappropriate medication, finding themselves
in an environment that exacerbates their difficulties in managing their
behaviour, and through carers and parents being resisted by professionals
and given the minimum amount of access. That cannot be tolerated. I
therefore urge the Minister to introduce the following measures as a matter
of urgency.
First, unless a psychiatrist has received an accredited training course and
has a recognised working knowledge of the treatment of Asperger's syndrome
and autism, a second opinion on the treatment and management of that
individual patient must be sought from another professional who has that
expertise as an input to the case. Secondly, the Department of Health should
set up an immediate investigation into the number of adolescents and adults
with an Asperger's syndrome diagnosis who have also been treated for
10 Sept 2003 : Column 440
schizophrenia, as we should know how many of these people are being
misdiagnosed and mismedicated. When an undiagnosed adult is suspected of
having Asperger's syndrome, a referral must be made to a professional who
has experience of autism. Diagnosis of adults cannot be learned from a
textbook. It takes years of work. It is much more complex than the diagnosis
of children, and there are people who have reached their 20s, 30s, 40s and
even 50s before being diagnosed, as other factors must be looked for. That
requires a huge level of expertise.
Paul Flynn (Newport, West): I congratulate the hon. Lady on securing this
debate on an important subject. The doubts that she has raised about the
effects of neuroleptic drugs have been experienced by a large number of
people in residential homes for the elderly and by many women in prison.
Will a call for such an investigation include a general investigation of the
effects of neuroleptic drugs among many other people?
Mrs. Browning: I would not disagree with that at all. We all have concern
about this area, and we would like to know much more about it. I know that
the hon. Gentleman has knowledge of this area, and I would certainly like to
know more.
On my list of what I would like the Minister urgently to consider is the
requirement for all primary care trusts to identify their autism and
Asperger's professionals for in-patient care and community care-from
community psychiatric nurse level to consultants in hospitals-and to
implement a structured training and accreditation programme. They should
also draw up a referral list, even if it is out of area, so that those
people who do not have the expertise know of a professional on whom they can
call for case-by-case referral.
If I need an operation for a broken leg, I would expect an orthopaedic
surgeon to deal with it. If I were admitted to hospital with an existing
heart condition, I would not expect to be medicated for some other
condition. It seems that psychiatrists are laws unto themselves. There is an
ignorance and an arrogance that permeates their approach to Asperger's
syndrome that is all too common.
In the advice to carers, many of us who are involved in dealing with
individual casework, including Members, are not prepared to accept the
status quo. It is becoming more common for cases to be tested in the courts.
I believe that many more cases will be so tested if the situation is allowed
to continue. It is criminal.
I have many files of heart-rending casework. I will not quote from them
because I know that those Members who are in their places will have had to
deal with such casework in their constituencies. I know that they will
understand the heartbreak for the individual and their carers when they come
up against a system that treats them in this way. It is leading to family
breakdown, where increasingly ageing parents and carers bear the strain of
lack of provision, of failure to diagnose or even a failure to recognise
diagnosis on the part of other professionals. In some cases, this has led to
permanent damage caused by inappropriate medication.
10 Sept 2003 : Column 441
I can think of no other area of health care where this situation would be
permitted. These patients are the least able to self-advocate, yet the
people who could advocate for them-their immediate carers-are sidelined. It
is cruel and it is unjust, and it must stop.
7.32 pm
The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman):
It is a great pleasure for me-I know that Ministers always say that when
they come to the Dispatch Box to respond to Adjournment debates, but on this
occasion it is truer than usual-to respond and to congratulate the hon.
Member for Tiverton and Honiton (Mrs. Browning) on raising the issue again.
I know that we are not allowed to refer to Opposition Members as right hon.
or hon. Friends, but on this subject I would like to think of the hon. Lady
in that way. She has made many constructive suggestions, while speaking with
much feeling and compassion.
Becoming a Minister was a joy for me. The one thing that I regretted,
however, was that I had to give up chairing the all-party group on autism.
The only consolation is that my hon. Friend the Member for Erewash (Liz
Blackman) has agreed to take over. I look forward to working with her and
the rest of the group in my new capacity.
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