DMH 271 National Autistic Society
| Submission to the Joint Scrutiny Committee on the draft Mental Health Bill 2004
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Introduction
Under the current Mental Health Act
1983 autism is not defined as a mental health condition and the
National Autistic Society wishes it to remain this way. However,
people with autistic spectrum disorder (ASD) including Asperger
syndrome are particularly vulnerable to mental health problems
such as anxiety and depression, especially in late adolescence
and early adult life. [39]
People with autism generally experience
three main areas of difficulty; these are known as the triad of
impairments.
- Social interaction (difficulty with
social relationships, for example appearing aloof and indifferent
to other people)
- Social communication (difficulty
with verbal and non-verbal communication, for example not fully
understanding the meaning of common gestures, facial expressions
or tone of voice)
- Imagination (difficulty in the development
of interpersonal play and imagination, for example having a limited
range of imaginative activities, possibly copied and pursued rigidly
and repetitively).
In addition to this triad, repetitive
behaviour patterns and resistance to change in routine are often
characteristic
Purpose of this submission
The National Autistic Society is a member
of the Mental Health Alliance. The purpose of this paper is to
highlight the particular nature of autism and draw the committee's
attention to the impact of current practices in mental health
on this group. This paper also outlines our thoughts on some proposals
in the revised draft Mental Health Bill 2004 and the Mental Capacity
Bill 2004.
Misdiagnosis
The current lack of understanding of
the nature of ASD often results in individuals with autism being
misdiagnosed. This can lead to isolation and acquired mental health
problems. Autism, in particular Asperger syndrome is often confused
with schizophrenia and personality disorders (schizoid and schizotypal)
by mental health practitioners inexperienced in autistic spectrum
disorders, resulting in completely inappropriate drug treatments
with the ensuing side-effects, and in some cases negative reactions.
Underlying this problem is the fact that in practice, adult psychiatrists
do not routinely consider a patients developmental history, which
is often the only indicator of their underlying diagnosis of an
autistic spectrum disorder. By failing to ask the right questions,
the condition is not identified.
For people with autistic spectrum disorder,
the key to mental well-being lies in prompt and accurate diagnosis.
According to a 2001 report,[40]
46% of people with Asperger syndrome were not diagnosed until
after the age of 16. Without a diagnosis, it is impossible to
put in place interventions that can assist the positive development
of people with autism spectrum disorders. They are unlikely to
receive appropriate services and may experience feelings of frustration,
depression and anger as they struggle to comprehend their impairments
and live independently. In order to prevent this downward spiral,
local authorities need to provide this group with practical life
skills that will empower them to lead happy and productive lives,
ultimately reducing the burden on the public purse.
Difficulties accessing appropriate
services
Adults with ASD often fall between Social
Services' Learning Disability Teams and Mental Health Teams.
It is often the case that these teams are in dispute with one
another as to which team has responsibility for an adult with
ASD. There are countless cases of prolonged arguments between
teams that lead to adults with an ASD missing out on support until
one team finally takes charge or in some cases legal proceedings
are brought against the local authority. Some local authorities
are seeking to combat this by creating "Vulnerable Adults"
teams, but eligibility criteria may still exclude many adults
on the autistic spectrum.
Question 2a
Is the definition of Mental Disorder
appropriate and unambiguous?
We have serious concerns about this
new broad definition because we do not believe that mental health
legislation is the most appropriate for people with autism. In
general we believe that the mental capacity Bill, with its assumption
of capacity, is the most relevant to the majority of people with
autism. We urge the committee to consider the relationship between
these two Bills. Under the current 1983 Mental Health Act autistic
spectrum disorder is not defined as a mental health condition
and we believe it should remain this way. We believe that people
with autism per se without any additional mental ill health should
not automatically be covered by this Bill. Whilst we acknowledge
that some mental health services can be helpful to people with
autism, we do not believe that people with autistic spectrum disorder
should automatically be covered by this particular legislation.
That is not to say that a person with autism and a genuine mental
health diagnosis on top should not be treated as anyone else under
the terms of mental health legislation.
The National Autistic Society urges
the committee to consider the non-psychotic nature of autism and
look at the particular needs of people affected by this condition
before making recommendations relating to the definition in the
Bill. The National Autistic Society would be happy to provide
further advice on this matter and would welcome the opportunity
to give oral evidence to explore this issue further.
Link with the Mental Capacity Bill
The National Autistic Society is an
active member of the Making Decisions Alliance and the Mental
Capacity Bill is currently being considered by Parliament. The
National Autistic Society believes that clauses 34 - 39 of the
Mental Capacity Bill which propose an 'independent consultee service'
under the Capacity Bill should be removed and replaced with independent
advocates.
Background on the Bournewood case
Mr L had autism and severe learning
disabilities and was admitted to Bournewood hospital following
an outburst at a day centre that he regularly attended. The doctor
in charge of the case decided that there was no need to detain
Mr L in hospital under the Mental Health Act as Mr L was compliant
and did not resist or attempt to run away. The patient was unable
to consent to admission but was not actively refusing to go or
remain in hospital. Mr L's carers opposed this course of action
and then took action against Bournewood NHS Trust claiming that
he was unlawfully detained.
Following the judgement of the House
of Lords it was established that those who do not have the capacity
to consent to admission to hospital for mental disorder but do
not actively object can be admitted informally under section 131
of the Mental Health Act 1983. Thereafter they can be treated
in their best interests under the doctrine of necessity. Mr L's
carers took the case to the European Court of Human Rights which
ruled on 5th October 2004 that his treatment in a hospital amounted
to detention and that this detention was unlawful.
In practice, the Bournewood case demonstrated
that carers have no right to challenge the decisions of doctors
when an informally detained patient is in hospital. Neither the
person with autism and learning disabilities nor his carers had
any legal right to challenge the decision because he had not been
detained under the 1983 Mental Health Act.
The Bournewood gap leaves people and
their carers without any of the safeguards available to detained
patients such as access to hospital managers' hearings and Mental
Health Review Tribunals, a care plan or review of that care plan
or controls on treatment such as second opinions. This was described
by Lord Steyn as an indefensible gap in our mental health law".
This is an area of law commonly referred
to as the "Bournewood" gap. It is of deep concern that
this individual was placed under continuous supervision and control
in a ward for a period of five months and was not free to leave.
Clearly, Mr L was deprived of his liberty. Health professionals
assumed full control of his treatment solely on the basis of a
clinical assessment, completed as and when they considered fit.
There was no requirement to fix the purpose of admission or limits
in terms of time, treatment or care attached to that admission.
The Bournewood case in relation to
the Mental Capacity Bill
It has been stated by some that the
Mental Capacity Bill would safeguard against future cases like
Bournewood. However the National Autistic Society does not share
this view. We are concerned that neither the Mental Capacity Bill
nor the draft Mental Health Bill addresses the concerns recently
highlighted by the European Court. The Mental Capacity Bill provides
none of the safeguards that were included in Part V of the initial
draft Mental Health Bill 2004. This includes appeal rights against
detention and second opinion on treatment options, a right to
a care plan and a review of that care plan, a right to a nominated
person to act as that person's representative and an advocate
to be available if that person wishes. These safeguards are necessary
to protect those who do not require formal detention but who are
regularly admitted into NHS settings.
The committee recently (Wednesday 20th
October) recently took evidence from Professor Genevra Richardson
who stated that one of the ways to close the Bournewood gap would
be to improve the safeguards in the Mental Capacity Bill. She
said "I am worried that the relationship between these two
terribly important Bills has not been properly worked out."
We share this concern and call on the scrutiny committee to consider
this matter and highlight these concerns with the Government.
Contact: ªenay
Camgöz
Parliamentary Officer
National Autistic Society
393 City Road
London EC1V 1NG
0207 903 3769
39 (Tantam & Prestwood, 1999). Ghaziuddin et al
(1998) found that 65 per cent of their sample of patients with
Asperger syndrome presented with symptoms of psychiatric disorder. Back
40
Barnard J. et al, Ignored or Ineligible? The Reality for Adults
with Autism Spectrum Disorders, NAS: London, 2001 Back
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