DISCLAIMER
Material herein is reported in condensed form from bulletins,
manufacturers' data sheets, patient information leaflets,
research documents, articles in newspapers, personal experiences
and other sources. As so reported, the information is
believed to be accurate. However APANA cannot be held
resposible for the validity of the information contained
in any reference noted herein, nor for the misuse of information
or any adverse effects from use of any stated materials
presented herein. Whilst every effort has been made to
ensure that the information given by APANA is as comprehensive
and accurate as possible, the information contained on
this site is for general guidance only. You should neither
act, nor refrain from action, on the basis of any such
information. APANA disclaims all responsibility (including
in negligence) for all consequences of any person acting
on, or refraining from acting in reliance on, information
contained in this site.Contributions from third parties
are their own views and while we attempt to maintain balance
we do not necessarily support or are responsible for those
views. No mention of any organisation, company or individual,
whether on these pages or other sites to which these pages
are linked shall imply any approval or warranty as to
the standing or capability of any such organisations,
companies or individuals. |
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The aims of Autistic People Against Neuroleptic
Abuse (APANA) are to:
- end routine prescribing and re-prescribing
of neuroleptics for asd
- reduce current neuroleptic prescribing for
all people with learning
disabilities, in a gradual and carefully monitored
manner to lowest
feasible levels - zero where possible
- raise awareness of side-effects and withdrawal
effects
- raise awareness of the non-psychotic nature
of autism.
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Download our letter about prescribed
drugs sent to the National Autistic
Society on 31 July 2000. Microsoft
Word (34 KB) or Text
Only (5.63 KB).
Download their reply (received in
April 2002) Microsoft
Word (26.5 KB) or Text
Only (3.94 KB)
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According
to Bazire's professionals' pocket handbook 'Psychotropic
Drug Directory' 2003-2004 p25:
"...autistic individuals seem very sensitive [to
antipsychotics] and so lower doses may be needed. A therapeutic
window may exist with higher doses counter-productive." |
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Pills in Question:
Neuroleptic/antipsychotic medications |
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Generic name 1st then UK brand name
Benperidol=Anquil: Chlorpromazine=Largactil:*Clozapine=Clozaril:
Droperidol=Droleptan: Flupenthixol=Depixol;Fluanxol:Flupenthixol
decanoate=Depixol:*Fluspiriline=Redemptin depot: Haloperidol=Serenace,
Haldol, Dozic:Haloperidol decanoate=Haldol Decanoate:
Loxapine=Loxapac:Methotrimeprazine/Levomepromazine=Nozinan:
*Olanzapine=Zyprexa:*Oxypertine=Oxypertine:Pericyazine=Neulactil:Perphenazine=Fentazin:Pimozide=Orap:
Pipothiazine decanoate=Piportil depot: Prochlorperazine=Stemetil:
Promazine=Sparine: *Quetiapine=Seroquel: *Remoxipride=Roxiam:*Risperidone=Risperdal:
*Sertindole= Serdolect :Sulpiride=Dolmatil, Sulparex,
Sulpitil:Thioridazine=Melleril: Trifluoperazine =Stelazine
:Zucopenthixol decanoate=Clopixol depot: Zuclopenthixol=Clopixol
*"atypical", more recent, antipsychotics
which may not have such severe immediate side effects
but many are implicated in heart problems and extreme
weight gain.
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| Some useful references which
add up to the conclusion that people on the
autistic spectrum are uniquely likely to be
inappropriately prescribed harmful antipsychotics
(see list of effects below): Autisme- Europe:
1999: European code of good practice for the
prevention of Violence and Abuse against People
with Autism: Brussels: DAPHNE/Autisme-Europe;
Bhaumik S, Branford D, McGrother C, Thorp
C: 1997: Autistic traits in adults with learning
disabilities: British Journal of Psychiatry:170:
502-506; Branford, D: 1996: A review of antipsychotic
drugs prescribed for people with learning
disabilities who live in Leicestershire: Journal
of Intellectual Disability Research: 40: 4:
358-368). Manchester, D: 1993: Neuroleptics,
learning disability, and the community: some
history and mystery: British Medical Journal:
307: 17 July: 184-187, Murray,D (1999) Potions
Pills and Human Rights, Good Autism Practice
vol 1,no1,pp71-84 or go to http://www.autismandcomputing.org.uk/potions.htm
for a longer version; Robertson, Emerson et
al (in press) Receipt of Psychotropic Medication
for People with Intellectual Disabilities
in Residential Settings. |
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Side
effects of neuroleptic medications
(compiled from manufacturers' datasheets and
elsewhere )
* signifies an effect which may be easily missed
in those who do not self-report
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Frequent onset
effects, sometimes fade with time
Blurred vision*
Breast enlargement, milk flow
Constipation*
Decreased sweating*
Dizziness, low blood pressure*, falls
Drowsiness* Dry mouth*
Headache*
Increased skin-sensitivity to sunlight*
Lightheadedness*
Menstrual irregularity or absence
Sexual difficulty*, decline in libido*,
genital pain*
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Other
Catatonic decline
NMS neuroleptic malignant syndrome:
a condition marked by muscle stiffness
or rigidity, dark urine, fast heartbeat
or irregular pulse, increased sweating,
high fever, and high or low blood
pressure.
Unchecked this condition can prove
fatal. Call the doctor immediately
if you notice any of these symptoms.
NB newer neuroleptics appear just
as likely to provoke this syndrome.Torsades
de Pointes: a condition which affects
the heart rhythm and can lead to sudden
cardiac arrest, when it is usually
fatal.
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Effects
which typically remain, worsen or appear
with prolonged use
Cataracts*
Difficulty urinating*
Difficulty talking*
Difficulty swallowing*
Eyes turning upwards
Fatigue*
Lassitude/torpor
Tardive dyskinesia (movement disorder)
Tongue edge "snaking"*(early sign of movement
disorder)
Jerky movements of head, face, mouth or
neck
Muscle spasms of face, neck or back, twisting
the neck muscles
Restlessness, physical and mental* resulting
in sleep difficulty
Restless legs resulting in inability to
sit down
Saliva drooling
Seizure threshold lowered
Skin rashes, itches, discolouration
Sore throat*
Staring looks
Stiffness of arms or legs*
Swelling of feet
Trembling of hands
Uncontrollable chewing movements
Uncontrollable lip movements, puckering
of the mouth
Uncontrollable movements of arms and legs
Unusual twisting movements of body
Weight gain
Yellow eyes, skin (indicate liver problem
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Frequently
found symptoms of abrupt withdrawal from
neuroleptics
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nausea*
emesis weight loss
diarrhoea rhinorrhoea (runny nose)
diaphoresis (heavy sweating)
myalgias (stabbing pains)* paresthesias
(odd sensations, eg burning feelings,etc)*
anxiety* agitation
restlessness insomnia increased
tremor (unmasked by withdrawal)
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HAVE
YOU GOT A STORY TO TELL?
APPEAL FOR INFORMATION - OPPORTUNITY TO TALK TO
A LAWYER
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The use of prescribed drugs - especially antipsychotics
- drugs to control the "challenging behaviour"
of people with learning difficulties or autistic
disorders has been of concern for many years.
The Government has now officially recognised the
problem in its recent White Paper, Valuing People:
A New Strategy for Learning Disability for the
21st Century:
Studies of the management of people with challenging
behaviour have shown an over-dependence on the
use of psychotropic drugs with poor outcomes as
a result. (p60)
There are concerns that alternatives are not
properly considered before the use of drugs, many
of which carry risks of side effects which can
cause social exclusion as well as physical harm.
Where the individual mentally incapable of making
the decision him/herself, treatment can only be
given if it is in his/her best interests*. The
"best interests" test is not just a
question of whether the treatment is acceptable
medical practice. Ethical, moral, social and welfare
considerations are also relevant. The availability
of a less restrictive or invasive approach - such
as addressing communication difficulties which
may generate "challenging behaviour"
- is of particular importance.
APANA (Autistic People Against Neuroleptic Abuse)
is concerned that the rights of people with learning
difficulties and autistic disorders should be
properly and fully respected in treatment decisions.
The group, with the help of their legal advisers,
is hoping to take up these issues with the Department
of Health. If you or a member of your family has
been prescribed psychotropic drugs to control
behaviour, or this is currently being proposed,
and you are unhappy with the treatment decision
or have noticed unwanted side effects, APANA would
like to hear from you. All information given would
be treated in confidence unless you give your
permission for it to be used.
Please contact Karen Ashton through Tyndallwoods
Solicitors on [UK] 0121 243 3139.
* If the person is detained under the Mental
Health Act 1983, the Act itself permits treatment
in the absence of the patient's consent, whether
they are incapacitated or not, but only in certain
circumstances.
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March 2001
Some quotes from UK Government
White Paper Valuing People: A New Strategy
for Learning Disability for the 21st Century
"Studies of the management
of people with challenging behaviour has shown
an over-dependence on the use of psychotropic
drugs with poor outcomes as a consequence." p67
"Challenging behaviours
are best thought of as being a way in which people
respond and try to gain control over difficult
situations.Psychotropic medication may be very
effective when there is an underlying psychiatric
disorder but there is concern that too often this
medication is used as an alternative to adequate
staffing." p110
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