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Contents:
- Executive Summary: Mental Health legislation and
people on the Autism Spectrum, APANA's views
- Capacity, Rights, and Advance Statements
- Crisis Management
- Preventing Crises from becoming Catastrophes
- Medication as a Last Resort
- Tribunals - Right to a Fair Trial (HRA 6)
- Inclusion
Appendix 1 An innovative approach to crisis
avoidance in autism 
Appendix 2 Side effects of neuroleptic (antipsychotic)
medications
Appendix 3 Socially and physically disabling and potentially
fatal effects of various drugs prescribed to modify
autistic behaviours
Appendix 4 Cited passages from the Law Society's, and
the United Kingdom Psychiatric Pharmacist Group's comments
on the Mental Health proposals.
Appendix 5 Please see Good Autism Practice (2002)
'Mental Health Issues in Asperger syndrome: preventive
mental health work in good autism practice' by APANA's
chair, David N Andrews; and 'Autism: a matter of attention'
by APANA's patron, Wendy Lawson.
Executive Summary
Re Mental health proposals, with particular regard to
adults on the Autism spectrum, the Government should
ensure that
1. It redrafts "its statutory proposals to take
account of all its policy views in the operation of
a future Bill" (LS:49); in particular, rights,
inclusion, independence, and choice.
2. The Incapacity bill is moved forward.
3. Advance statements with legal force are prepared
through a person-centred planning process which includes
circles of support.
4. Autism is recognised as neither a mental health problem
nor a personality disorder, and may not involve any
learning disability.
5. Autistic overload crises are routinely dealt with
by minimising both social and sensory stimuli, and allowing
individuals' own coping strategies to come into play.
6. Doctors especially psychiatrists are trained to identify
autism and appreciate that it is not an illness, and
are taught basic guidelines for dealing respectfully
and appropriately with people on the autism spectrum,
ie by minimising both social and sensory stimuli, and
allowing individuals' own coping strategies to come
into play.
7. All professionals in medical and related services
are thoroughly trained in autism and taught basic guidelines
for dealing respectfully and appropriately with people
on the autism spectrum.
8. All public service providers are taught basic guidelines
for dealing respectfully and appropriately with people
on the autism spectrum.
9. Physical problems are ruled out before psychiatric
attributions are made in people who do not self-report,
which may include even highly verbal individuals.
10. Environmental and/ or dietary triggers for and solutions
to overload crises are sought.
11. Medication is only used as a last resort, and then
at the lowest feasible levels (a fraction of standard
doses) for the shortest feasible time.
12. Everyone concerned with administering medication,
and everyone who sits on a Tribunal, is trained in potential
adverse drug effects and withdrawal effects.
13. The many safeguards for non-standard prescribing
of psychotropic drugs proposed by the United Kingdom
Psychiatric Pharmacy Group (see Appendix 4) are in place
for all psychotropic prescribing.
14. Circles of support including family members are
recognised and encouraged.
15. The named person who will help ensure appropriate
care is provided, is drawn from the circle of support
and knows the individual well, a sibling or cousin is
ideal.
16. The named person is named on the Advance Statement.
17. The named person is summoned promptly in any crisis.
18. Fluctuating capacity is recognized and all steps
to support communication are taken, including reduced
time pressure, and access to information technology.
19. Tribunals are able to draw on an appropriate range
of non-medical as well as medical expertise, from any
part of the country.
20. Tribunals are instructed to give equal weight to
non-medical expertise.
Mental Health legislation and people on
the Autism Spectrum, APANA's views
APANA has surveyed a wide range of responses
to the Government's Mental Health reform proposals from
members of the Mental Health Alliance. We at APANA share
many of the concerns raised but also wish to highlight,
as does the National Autistic Society (NAS), that autism
is a distinct condition, and requires a distinctive
approach. Of all the responses, the most generally cogent
and relevant to the concerns of Autistic People Against
Neuroleptic Abuse are those of The Law Society (LS)
and of the United Kingdom Psychiatric Pharmacy Group(UKPPG).
The latter particularly in regard to safeguarding patients
who are being prescribed dangerous drugs.
APANA shares the widely held view that
the proposed Mental Health legislation has been distorted
by considerations relevant to only a tiny minority of
cases. In particular APANA shares the Law Society's
view that the Government should "redraft its statutory
proposals to take account of all its policy views in
the operation of a future Bill" (LS:49). For example,
the principles which are prominent in the Valuing People
White Paper - ie rights, inclusion, independence, and
choice - should be just as prominent in legislation
concerning the Mental Health services. Like the NAS,
APANA emphasises that autism is not a mental illness,
and that if the appropriate measures are taken the vast
majority of people with autism need never encounter
mental health services.
APANA agrees with the strong statement
at LS:2
"The Law Society views the central
proposals of the draft Bill as fundamentally flawed,
and suggests that any progress by the Government on
the draft Bill should be halted immediately. Instead
the Law Society asks that urgent parliamentary time
is made for an incapacity bill, while the Government
works with the Law Society and other key stakeholder
groups to draft a more effective and ethically desirable
set of law reform proposals."
Capacity, Rights, and Advance
Statements
APANA hopes both Mental Health legislation
and incapacity legislation will take account of the
fact that the capacity to make decisions of an individual
on the autism spectrum will vary with topic, situation,
interlocutor and means of communication. Care must therefore
be taken in every case to maximise each individual's
functional capacity.
APANA believes everyone on the autism
spectrum who is not in full-time care should have a
carefully prepared Advance Statement. We concur with
the Law Society in the view "that Advanced Statements
should be included in a future Bill, as a demonstration
of the Government's commitment to the principle of patient
involvement."
These Statements should parallel the care plans which
are obligatory for those in residential care in being
derived from a person-centred planning process in which
both the individual themselves and those who care for
them are involved. It should focus on empowering individuals,
and detail the best ways to help them gain control over
their own behaviours and therefore their own lives.
(LS:2ii;6;106; LS:52-54)
Because of their communication difficulties
- which always worsen in crises - everyone on the autism
spectrum benefits from supported communication which
minimises overload and time pressure. It is extremely
easy to manipulate most adults with autism who speak,
since they tend to have learnt early on that their best
bet for staying out of trouble is compliance, especially
with authority figures. That makes it crucial to draw
up Advance Statements which involve individuals' circles
of support, including family members, in low pressure
situations with lots of time for shared understanding
to develop. It is notable that emails can be used even
by people who are not literate (symbols will be automatically
translated into text and vice versa) and with support
can provide a low-pressure means of communicating in
all dealings with service providers.
Crisis advocacy is particularly ill-suited
to supporting individuals on the autism spectrum, even
if advocates have received autism-specific training:
the communication gap will be too wide. Only long-term
citizen-advocacy relationships are potentially useful
here, but without incentives of some sort it is unlikely
that the required increase in recruitment of citizen
advocates will occur. Encouraging families to foster
circles of support for those they care for would be
the most expeditious way to address these issues. Any
'nominated person' should also have a long-term connection
with the individual whose best interests they are meant
to represent, or they will be poorly placed to do so.
Therefore such a person should be part of the circle
of support - a same generation family member such as
a cousin or sibling is ideal - should be identified
in advance, and should be named on the Advance Statement.
(LS: 37f; 42ii; 43; 115-20 incl fn). Access to the familiar
named person should be as nearly immediate as possible
for anyone with severe communication difficulties.
Crisis Management
Overload crises are commonplace in autism, build
up very rapidly and can lead to temporary loss of capacity,
with complete cognitive and communicative "shut-down".
Sometimes an underlying cause of such a crisis may be
a painful physical problem such as severe constipation
or toothache which may easily be missed in those who
do not self-report . But in general crises typically
resolve rapidly, ie within minutes rather than hours
or at worst within hours rather than days, if they are
handled appropriately. The individuals involved in these
crises do not require mental health interventions, they
require socially sensitive non-intervention and a chance
to recover using their own coping mechanisms. A dramatic
decline of pressure on crisis intervention services
could be secured if these naturally short-lived crises
were generally handled with greater understanding.
Better training in autism should be a
focus of training needs in all the emergency services
and also among all people who provide a service directly
to the public, from doctors to bank clerks. It should
also be obligatory for everyone who is a regular member
of a Mental Health Tribunal. This training should include
many of the useful recommendations from the DoH and
DfES relating to ASDs in children, which could be adapted
to the adult population (www.dfes.gov.uk/sen/documents/ACF4DAB.htm).
Preventing Crises
from becoming Catastrophes
APANA agrees with the NAS that "The Bill ought
to emphasise the importance of prevention," and
recommends that ways of pre-empting overload crises
in individuals on the autism spectrum should be explored.
General increased awareness, specific training, and
improved understanding are needed. A non-medical, educational
and environmental approach to autism is called for,
with attention to sensory as well as social difficulties.
The possible role of diet in these should be taken into
account: many people on the autism spectrum have food
allergies or intolerances.
People on the autism spectrum generally
feel that their autism is not "something"
which they "have" i.e. is not a disease to
be cured, but is a distinctive way of perceiving the
world which is at the core of their being. It has advantages
as well as disadvantages, but in a rapidly changing
world with fluid and shifting rules the disadvantages
usually dominate the life experience. The clearly structured
and stable society and low stimulus environment which
favour the autistic disposition are no longer available,
therefore we need to give people on the autism spectrum
the means to cope with the world as it is. Please see
Appendix 1 for an innovative approach to these issues.
If an unmanageable crisis does occur then
the individual involved is likely to encounter both
police and mental health professionals. At such times
the nominated person should be called in as rapidly
as possible. Most people on the autism spectrum, like
Ros Blackburn (to an APANA meeting at the House of Commons
on Nov 18th), testify that they prefer the law to the
medics. Mental health services are commonly not merely
ignorant of ASDs and how to tackle problems arising
from them, they are programmed to carry out a number
of procedures which - however well intentioned - are
harmful to individuals on the autism spectrum. They
tend to assume that intrusive social behaviour is appropriate.
They tend to assume that any distressed behaviour they
see has a psychiatric cause and overlook possible physical
causes. Yet their approach to psychic distress is to
see it as always pathological and hence requiring medical
intervention. Ros Blackburn (loc cit) says that, for
a short spell, the peace, safety and freedom from other
people of a padded cell is far preferable to a medication
which takes away her ability to control her self.
Furthermore, because of their training
psychiatrists tend to be looking for schizophrenia.
People with autism sometimes make elaborate idiosyncratic
mental connections and have beliefs which strike other
people as bizarre. But these are not the florid delusions
of schizophrenia: they do not result from a loss or
breakdown of previously sound understanding, they result
from a prior absence of sound understanding. As for
anyone else who is not psychotic, the way to dislodge
such delusive beliefs is through improved understanding
rather than drugging. Antipsychotic drugs make improved
understanding less likely not more likely.
APANA does not share the National Autistic Society's
view in its response that newer drugs are much better
than the old. At standard (and especially accumulating)
doses there is mounting evidence of a range of adverse
effects from the 'atypical' antipsychotics, with a potential
to be as physically and socially disabling as the very
first antipsychotic, chlorpromazine (Largactil) - please
see attached charts. The NAS's view is puzzling given
the following, also from their official consultation
response:
"Confusion with schizophrenia, obsessive-compulsive
disorder, schizoid or schizotypal personality disorders
in men and borderline personality disorder in women
may lead to inappropriate drug treatments with potential
adverse side-effects or negative reactions…. Individuals
whose behaviour is thought by mental health professionals
to be strange or bizarre may find themselves liable
to compulsion even though they pose no danger to themselves
or others. Given the limited awareness and understanding
of autism spectrum disorders amongst adult psychiatrists,
there are real grounds for concern that the behaviour
of people with autism and Asperger syndrome may be misinterpreted
in this way."
The broad definition of mental disorder in the proposed
legislation increases the likelihood of being incorrectly
identified as having a mental health problem, unless
the qualifications of the criteria as at LS: 70; 71
are in place, and it is explicit that autism is not
in itself a health problem and therefore there is no
medical treatment which is appropriate, because there
is no 'health benefit' to be gained.
The issue of capacity in autism is extremely complex
and leaves people on the autism spectrum highly vulnerable
to mistreatment. APANA has witnessed a psychiatrist
announcing that a 30 year old man with autism, vocal
but with an IQ below 70, was well able to decide whether
or not to take the medication she was proposing. She
had asked him and he had said, "Yes". Even
people on the autism spectrum with much higher IQs than
70 may not understand the nature of such a decision
without lengthy step by step explanation.
Medication as
a Last Resort
APANA would choose environmental rather than pharmaceutical
approaches, but recognises that sometimes a crisis may
develop into a situation in which habilative approaches
have been abandoned and medication options considered.
For short-term sedation (i.e. one to three doses in
24hours or less) APANA would always choose a benzodiazepine
rather than an antipsychotic, because of the lethal
potential of the latter (see Appendix 3).
APANA broadly agrees with the safeguards listed by the
UKPPG for people who are being given what the UKPPG
refer to as "non-standard" pharmaceutical
treatments or who have long-term incapacity. Their citation
of American standards in this area is appropriate:
"The pivotal standards were stated by US District
Court Judge Frank Johnson in a 1972 Wyatt v. Stickney
case:
Residents [with learning disabilities] shall have the
right to be free from unnecessary or excessive medication.
The residents records shall state the effects of the
psychoactive medication on the resident. When dosages
of such are changed or other psychoactive medications
are prescribed, a notation shall be made in the residents'
record concerning the effects of the new medication
or new dosages and the behaviour changes, if any, which
occur.
Medication shall not be used as punishment, for the
convenience of staff, as a substitute for a habilitative
program, or in quantities that interfere with the residents
habilitation programme.
Additional safeguards are provided under OBRA guidelines
which specify circumstances in which antipsychotic agents
may not be prescribed. These include the control of
nuisance behaviours such as shouting and wandering…
Recommendation No.6 The New Mental Health Act contains
a mandatory review of psychotropic drug treatment prescribed
for people who are incapable of understanding the purpose
of the treatment. Guidelines for psychotropic drug treatment
prescribed for people who are incapable of understanding
the purpose of the treatment should be stated in a new
Code of Practice"
In addition to the points raised by the
UKPPG, we suggest that when psychotropic drugs are prescribed
to people on the autism spectrum, it should be at the
lowest possible levels, with no assumption that titrating
upward will always be necessary. Doctors who remain
convinced that neuroleptic prescription is called for
should be aware that individuals on the spectrum report
that as little as one sixteenth to one eighth of the
supposed minimum dose may be effective and calming for
them, without loss of function. A small number of psychiatrists
have been practising this low-dosing approach (eg Dr
Steve Hinder in the West Midlands), but unfortunately
the vast majority of prescribers do not realise that
the "therapeutic" dose level is irrelevant
to autism, having been decided in studies of treatment-resistant
psychosis. They habitually raise the drug to the supposed
"therapeutic level" over a period of three
days. This can result in severe and multiple loss of
function. The contrast in usefulness of these different
dosing regimes parallels the contrast between the effects
of one glass of wine or two bottles of it. The new Code
of Practice should address this issue.
Long-term cumulative damage from psychotropic drugs
includes dependency-creating neuronal changes causing
withdrawal problems of increasing severity. Therefore
APANA also urges that these medications should not be
prescribed to people on the autism spectrum, who often
have compromised immune systems, even at the lowest
doses for longer than a few weeks at a time. Withdrawal
effects are often mistaken for independent, non-iatrogenic,
psychiatric, or physical problems. Withdrawal symptoms
can cause much human misery and provoke damaging prescribing
cascades: to avoid this, withdrawal should take place
over a period of months rather than weeks. It is vital
that doctors and other involved professionals, including
Tribunal members, should be trained to recognise both
side effects and withdrawal effects. This also should
be addressed in the Code of Practice.
APANA differs from the UKPPG on two main points. We
would like to see equally stringent safeguards applied
to "standard" as to "non-standard"
prescribing practice. We do not believe that a pharmacist
is well placed to play an advocacy role, especially
(for general reasons given above) in relation to individuals
on the autism spectrum.
Tribunals - Right to a Fair
Trial (HRA 6)
APANA applauds the attempt to broaden Mental Health
Tribunals and bring in non-medical expertise. However,
in practice limited panels of experts based in local
areas will,in time, lose focus and cease to be genuinely
independent. APANA has heard a Mental Health Tribunal
chair referring without a blush to "our doctors",
and has experienced similarly close relationships between
approved social workers, psychiatrists and Tribunal
members. In our view anybody with relevant recognised
professional expertise should be available to Tribunals,
so that expert witnesses can be called as appropriate
on an occasional basis. For example a movement disorder
specialist might be called to discuss akathisia, or
a former teacher with autism expertise might be called
to testify that an individual showed no challenging
behaviour in structured and predictable situations.
Doctors, who are often untrained in autism, should not
retain their current pre-eminent role in MHTs involving
people on the autism spectrum.
APANA shares the Law Society's view (LS:95) and is equally
concerned
"that there is no indication that the Tribunal
will be removed from the auspices of the Department
of Health to the Lord Chancellor's Department and the
Court Service, as proposed in the Leggatt Report. This
would provide not only the proper level of independence,
but the appearance of independence necessary to ensure
public confidence."
Inclusion
APANA would like to draw attention to the attached list
of side-effects of a variety of drugs, especially antipsychotics,
sometimes prescribed to people with autism. These side-effects
are assessed at standard dosing levels. As you can see,
a large number of adverse effects can result from these
drugs, even in people with psychosis who are thought
to be less susceptible to them. These effects may be
worth it to someone who would otherwise be excluded
from society by their psychosis: in that case the drugs
may promote social inclusion. However in people on the
autism spectrum the large number of socially disabling
effects means that at the usual doses the drugs tend
to have the opposite effect and make social inclusion
less likely. Stiff shuffling walk, slurred speech, drooling
and twitching, and sudden uncontrolled gross movements
of the tongue, mouth or face, or of an arm or leg, are
not socially appealing. These are all frequently found
adverse effects.
Also relevant to issues around inclusion is LS 63:
"It is widely recognised that there is a disproportionate
representation of
certain minority groups within the mental health system
…. It is accepted that members of these groups
are more likely to be compelled to accept treatment,...
As such, compulsion falls more heavily on these minority
groups."
Although this was conceived as a comment
on discrimination against ethnic minorities, people
on the autism spectrum are members of a similarly discriminated
against and excluded minority.
People on the autism spectrum are among
the most vulnerable in our society. Previous policies
have caused their lives to be ruined and their abilities
and potential to be wasted, because their distinctive
needs have been overlooked. APANA hopes that the new
Mental Health legislation will not worsen their situation
as it threatens to do.
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