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Autistic People Against Neuroleptic Abuse

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In 1998, Dinah Murray founded APANA (Autistic People Against Neuroleptic Abuse), an autistic-led campaign in the UK to stop the overuse of drugs being given to people with intellectual disabilities. The campaign subverted the medicalization of “challenging behavior” and focused on three cases studies of institutionalized autistic adults who were being overprescribed. Murray compiled statistics on their medications and their visits to doctors, found allies, began spreading the message via the internet and using legal recourse. Espousing a non-pathological model of autism, APANA raised awareness of the harms of overmedication in the learning disability world and, perhaps, more caution in the psychiatric world. It may have impacted on some government guidelines, and on the author’s reputation as resourceful and reasonable, which benefitted her future activism.
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4
Autistic People Against Neuroleptic Abuse
Dinah Murray
Origins
In the mid-90s I had a job as a support worker for people with severe and
multiple learning (intellectual) disabilities including autism, who had been
discharged from National Health Service (NHS)-run long-stay hospitals
into “the community.” Our training for this job was thorough and humane
in many ways, but little was said about the stacks of ring-bound blister
packs of pills kept under lock and key. A community pharmacist explained
to us how to administer the pills in the right order at the right time
with proper regard to hygiene and record keeping. Nothing was more
important, it seemed.
At first I took it for granted there were good reasons for all the pills:
after all, these people had come out of hospitals. However, after a while I
noticed that thioridazine was one of the “medications” and it rang a bell
as one of the “old, dirty” antipsychotics aka “major tranquilizers”—well-
known to cause severe movement disorders inter alia. I started looking up
D. Murray (B)
London, UK
© The Author(s) 2020
S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_4
51
52 D. Murray
the other drugs, then someone left this photocopied article in the office
about the use of antipsychotic drugs with adults with learning disabilities
and challenging behavior. These disabled people were being deliberately
sedated with extremely harmful drugs.
One night the young manager, in tears, told me she’d just discovered
that one of our most severely disabled people, who had gone into the old
institution when he was 4 or 5 years old, had ridden his tricycle into the
long stay hospital where he had then lived and been drugged with major
tranquilizersfor 40 years. We knew him as someone who needed help
even to turn over. The period when our people had been hospitalized was
a period of excited experimentation with new drugs and the doctors really
had no idea what they were doing when they prescribed doses of chlor-
promazine (an antipsychotic) to children which would later be regarded
as around twelve times the recommended maximum. I was in tears too.
I became obsessed with the medication. It was increasingly clear that we
were looking at routine, unquestioned, administration of substances that
everybody in the know knew to be dangerous, to people that everybody
in the know knew to be powerless: the rage drove work lasting into the
twenty-first century.
As I got deeper into the general research I was doing, I became more
and more horror-struck by the great range of problematic features of the
whole psychotropic prescribing business, which were stripped bare in the
power structures in which people with no information and no voice were
ultimately vulnerable. I discovered that the drugs had a negative impact on
hormones, insulin, dopamine, teeth, all drives including sex drive; I dis-
covered these drugs kill people as well as twisting their limbs; I discovered
that there was a long-term cumulative harmful impact and that the move-
ment disorders many develop include a terrible restlessness, emotional
and physical, as well as catatonia-like loss of function and uncontrollable
tongue and limb movements; that polypharmacy—multiple prescribing—
was often to counter iatrogenic impacts of other drugs; that it had long
been known that previously sane monkeys had gone bonkers after being
dosed with a neuroleptic for several months which was suddenly with-
drawn, causing not “relapses” but discontinuation syndrome, and gradual
withdrawal was strongly recommended but rarely followed; that people
were being medicated for distressing events and their signs of misery were
4 Autistic People Against Neuroleptic Abuse 53
seen as challenging instead of them being helped to deal with their under-
standable grief and upset; that urinary incontinence was a possible adverse
effect (with huge social consequences) that was regarded as insignificant;
that lactation was sometimes triggered, even in males; that weight gain
to the point of obesity was shrugged off in the research but punished in
the kitchens by stricter diets and locked cupboards. Worse still, all claims
of “successful outcomes” were based on reductions in behavior of various
sorts—given the usual sedating effects of the major tranquilizers, their
ability to reduce behavior was unimpressive—the sedative effect wears off
after 6–8 weeks, few studies at that time lasted longer than 6–8 weeks (see
Fig. 4.1).
So I left my regular job and signed on as a relief worker, a casual worker
status that meant I could never be asked to distribute medications. This
also gave me more time for research and to develop a campaigning website.
Thanks to pharmacologist Paul Shattock who told me about it—he was
publicly concerned about the use of neuroleptics for behavior control long
Fig. 4.1 The chart clearly showed that the vast majority of claimed “benefits”
of medication in this sphere are about reducing behavior rather than enhancing
personal well-being or capacity
54 D. Murray
before his public support for Andrew Wakefield’s dubious research into
the MMR vaccine—I went to an Autism Europe Conference in Brussels
and heard about their Code of Good Practice on Prevention of Violence
against Persons with Autism [1]. Paul also introduced me there to a con-
cerned mother from the UK; meeting her at that conference was the first
necessary step toward getting some activists working together in the tiny
and unstructured group we called Autistic People Against Neuroleptic
Abuse, or APANA for short.
The point of APANA was to be an effective vehicle to raise awareness
of the harms being done to vulnerable people in the name of care, and
to penetrate some entrenched positions in huge and deep-rooted power
structures. For people with access (not the subjects of my case studies!),
the Internet proved a rich source of information about both government
and NGO thinking on these and related issues: there were consultations,
and guidelines, and that was one way to get one’s voice heard.
Getting to Work and Forming Alliances
APANA recruited two autistic people: as Chairperson, David Andrews,
who was in the process of acquiring several psychology-related qualifica-
tions; as Patron, Wendy Lawson (now known as Wenn Lawson), who was
well along a similar path. The rest of the team were all parents of adult
offspring they had seen damaged by psychiatrictreatment. I was spending
more and more time reading research (for example, [26]). I discovered
that an unexpected result of the hospital closures was that prescriptions
of psychotropics had gone up as neighbors of the new noisy people in the
community complained. When I looked into the old prescription records,
I found that this was true for almost everyone in the houses where I most
often worked. The institutions had eventually had a policy of reducing
medication.
There was one discovery in the files that tipped my concern from a
commitment to an out-and-out mission. A service user I’ll call Patrick,
who was on the highest neuroleptic dose I found in this group, had become
borderline catatonic. From the files it was clear that he had once been
fairly lively. Then I found a letter, addressed to senior management from
4 Autistic People Against Neuroleptic Abuse 55
the “community” learning disability psychiatrist. She complained in her
letter that support workers had questioned her judgment that Patricks
medication should be increased by 30%. Since the rules that govern care
providers explicitly require them to follow all medical advice or put their
business at risk, this reproach was significant and probably got some caring
and conscientious workers into a bit of trouble. Much worse though were
the repercussions for Patrick: the psychiatrist had increased his dose by
50% after her authority had been questioned in this outrageous way;
without prompting he was no longer able even to complete the action of
putting a kettle on to boil. It is ironic that “health and safety” risk aversion
in social care settings led to routine, authorized, high-risk behavior by both
staff and management toward the people receiving their “care.”
I discovered that distinguished psychiatrist Lorna Wing was interested
in autism and catatonia, and had expressed concerns that neuroleptic pre-
scribing was sometimes implicated in its onset. So I rang Lorna Wing’s
Centre, then known as the Centre for Social and Communication Disor-
ders, in the hopes of speaking to her. She was not there that day but Judith
Gould came to the phone to deal with this unknown support worker’s
anxious query. She listened to the problem, immediately said I should
ring Lorna Wing herself and gave me her home phone number. So next I
picked up the phone and dialed that. The great Wing answered the phone
herself and was so interested and open that I trusted her at once and said
very soon after our conversation began, that all I had found among her col-
leagues was “Arrogance, ignorance, and hypocrisy”—to which, taking my
breath away, she replied with vigor, “I couldn’t agree more!” One couldn’t
hope for a better ally in this particular battle [7].
Communicating Our Message Across Many
Platforms
I decided to write up case studies of what I’d found in the files in a way
that would make the research as effective as possible. I looked at quality
of life issues and the impact on those of the ramified adverse effects of
the prescribed drugs; I compiled detailed timelines for four service users,
three of them autistic, and their life events [8].
56 D. Murray
Unfortunately, how to carry out quality of life assessments objectively
remains a vexed question to this day [9], so instead I took and followed
advice on assessing relevant costs, such as travel and staff time, in British
pounds and went back through the records adding actual costs or rule-
governed estimates of costs to the timelines.
Our website, run by my friend Sue Craig, had much factual infor-
mation, including all the illustrations to this chapter, and useful links
and ancient advertisements for old drugs and new. Canadian artist Ralph
Smith designed an elegant logo for us (Fig. 4.2). This served us well and
got the message out that Autistic People Against Neuroleptic Abuse was
an active force. Autistic activists in the USA such as A. M. Baggs (now
Fig. 4.2 Summarized comparisons of restrictive or potentially fatal effects of
psychotropic drugs prescribed for autistic adults with learning disabilities and
challenging behavior (ca 2001). From left to right, starting with the antipsy-
chotics: phenothiazines (e.g. Chlorpromazine), thioxanthines (e.g. Fluenthixol),
Haloperidol, pimozide, risperidone, olanzapine; and then various non-neuroleptic
experimental drugs for autism-related perceived problems, viz paroxetine, lithium,
carbamazepine, buspirone, naltrexone, and the beta-blocker propranolol
4 Autistic People Against Neuroleptic Abuse 57
known as Mel Baggs) and Kassiane Sibley (now Kassiane Asasumasu) were
supportive and deepened my understanding of what it is like to be on the
receiving end of interventions designed solely for the purpose of suppress-
ing behavior which other people condemn.
Being able to brand the work as from “APANA” was I think particularly
helpful in being taken seriously rather than assimilated into the vox populi.
Mencap, the main British learning disabilities charity, agreed to circulate
the research to their consortium of service providers in this field.
It also helped that I had some strategically placed friends and allies.
David Branford, a senior learning disabilities pharmacist, was sympathetic,
and encouraged me to attend a conference he was organizing in Leicester
late last century. It was there I first encountered the “psychiatry is to real
medicine as astrology is to astronomy” meme, inadvertently shared with
me by a psychiatrist who misjudged my status until rather late in our
conversation, assuming I was a fellow clinician.
Rita Jordan at Birmingham University gave me a platform for the med-
ication issues on one of the Autism Distance Education Course weekends,
thus reaching everyone doing the course at that time. Almost all of those
were professionals in the field, some in senior positions, including people
who worked with adults. Glenys Jones was in the process of setting up
a new, practical, autism-relevant journal, Good Autism Practice,andshe
invited me to submit my research for the prototype issue, published in
1999. I also got a poster presentation at the Autism Europe Conference
in Glasgow that year and Wen Lawson and/or I were there in person
throughout ready to discuss it.
Pressing Parliament and Leaning on the Law
I undertook a careful analysis of a range of medications proposed
at the time for “ameliorating autistic behavior,” and I scored adverse
effects according to their recognized frequency (using the free Med-
line database). Risperidone, newly popular with prescribers, was only
slightly less harmful than chlorpromazine at the recommended (like-
for-like) dose ranges for psychosis (see Fig. 4.3). Wenn Lawson and
myself addressed a sub-committee of the All-Party Parliamentary Group
58 D. Murray
Fig. 4.3 The APANA logo, designed by Ralph Smith
on Autism about prescribing, illustrated with Fig. 4.1.(Oneofthepeo-
ple who heard us was Virgina Bovell, a mother of an autistic person with
learning disabilities, in whom we found a new ally despite her involvement
with behaviorism—I later came to understand that parents may be pre-
sented with behavioral approaches as the only alternative to a medicalized
attitude and recourse to drugs.)
I got views from as many as possible autistic people with relevant expe-
rience and discovered that some, but not all, were saying that at a very
low dose, they found risperidone positively helpful; that it improved their
mood and could make social encounters less stressful. If someone tells me
that they find a drug helpful and their consumption is moderate, I’m going
to see that as normal human practice. In the case of risperidone or other
antipsychotics, I liken this to accepting that a glass of wine every day may
do a lot of good, while a bottle will not. To me it is the absence of choice,
the absence of relevant information, and the inability to refuse that need
fixing. In the long run, it is worth noting that most of the people I knew
who liked risperidone at a low dose eventually developed adverse effects
that put them off—they were fortunate to have the capacity to articulate
their problems and the autonomy to make this decision.
(Having now, two decades later, read through extensive messages posted
in the last few years on mental health forums, it is clear that low dosing
with risperidone has become commonplace, especially for anxiety. It is
also clear that there is a major division in people’s experiences of this
drug, with some people greeting its effects with joy and others with real
horror.To give something as powerful and unpredictable as this to people
who are unable to tell you how they feel, still seems to me the height of
irresponsibility. People need to understand the potential risks and freely
4 Autistic People Against Neuroleptic Abuse 59
choose to take them. Clearly that did not apply to the people in my case
studies!)
Though our message was being heard in some quarters, the extreme
power imbalance sometimes seemed overwhelming. So we decided to keep
pushing positive proposals tied to precisely referenced and cited govern-
ment papers, by addressing civil servants, administrators, and Members
of Parliament about the law with some specific suggestions that I set out
at length. These are to be found following the main text of my “Potions
and Pills” piece [8] in the longer version online.
A related line I decided to follow was to get a proper legal view pro
bono (for no fee because for the public good) if possible. Somehow I
found a deeply committed solicitor, Karen Ashton, and barrister Paul
Bowen of the Doughty Street Chambers in London, who were willing
to look to assess the legal situation vis-à-vis medical treatment that flouts
the Hippocratic Oath, Do No Harm—especially to people deemed to be
“mentally incapacitated.” They needed someone to gather the evidence
together and I gave up my job entirely for three months, during which I
created a compendium of abstracts substantiating a great variety of adverse
effects and at the same time demonstrating that reduced behavior was
the key index of “efficacy” in their use (see Fig. 4.1). This resulted in
lawyers Bowen and Ashton producing a discussion paper (available in the
online edition of this chapter), which suggested that medical treatment
can amount to an assault unless great care is taken regarding consent or
“best interests.” They proposed that the Human Rights Court “may well be
willing to exercise its power in relation to the prescribing of psychotropic
drugs, particularly where serious side-effects are well-established.” This
was circulated widely.
In 2001, Ashcroft and colleagues [10] called for better research
into antipsychotic prescribing for “challenging behaviours.” They cited
Brylewski and Duggans [11]Cochrane Review, as showing “over 500 cita-
tions assessing the impact of antipsychotic drugs on challenging behaviour.
Of these only three were methodologically sound randomised controlled
trials, but even these were unable to show whether antipsychotic drugs
were beneficial or not in controlling challenging behaviour” [10].
60 D. Murray
Impact
Ashcroft and colleagues frame the issues thus: People with learning dis-
ability sometimes display challenging behaviour. This can be managed by
use of antipsychotic medication or behavioural therapy or both. There is
no solid evidence, however, that these therapies are safe and effective.”
Unfortunately the possibility that behavioral therapy may not be safe was
not pursued, nor was the possibility that a focus on behavior control can-
not preserve mutuality, create trust, or be authentically “person-centered.”
This fixation with behavior, along with skillful marketing of “Positive
Behaviour Support,” has underpinned and undermined a medical cam-
paign against the drugging launched in 2018 (see below).
Consent issues and the best interest concept were soon to be leading
themes in the Mental Capacity Act (2007), (a development to which Paul
Bowen contributed). That is a very strong piece of rights legislation in
principle, though it has thrown up some paradoxes in practice (see, e.g.,
DoLS discussion at House of Lords 2015, or this Parliamentary video
from 2018, https://www.parliamentlive.tv/Event/Index/d47bf41e-72b1-
48d8-afc5-b5727a40f05b). The MCA guidelines draw attention to the
possibility that the psychotropic effects of some medications may hinder
judgment, and there are widespread guidelines on administering medica-
tion to people whose best interests must in law be factored in. In 2006
the University of Birmingham published an attempt to address the con-
sent issues by creating a simplified symbol-based system for describing the
medications and their effects [12]. Perhaps our activities contributed to
the wider recognition of such needs, but how much long-term impact did
we have?
Maybe a bit for a while—however, see this from the Foreword of the
Faculty of Learning Disabilities of the Royal College of Psychiatrists [13]:
There is compelling evidence that a significant number of people with intel-
lectual disabilities are prescribed psychotropic medication that, at best, is
not helping them. In particular, there is a risk that doctors are prescribing
medication to treat behaviour that is an expression of distress or a mode of
4 Autistic People Against Neuroleptic Abuse 61
communication rather than a mental disorder. Some people with intellec-
tual disabilities have difficulty communicating their emotional needs and
preferences. Therefore, doctors have a particular responsibility to ensure
that they have fully assessed a persons potential to benefit from medication
before they prescribe. They must also check that the anticipated benefits
have occurred after they have prescribed.
David Branford, whose earlier work [5] influenced mine, co-edited this
careful and strongly worded document produced by a team dominated by
learning disability specialists.
With two provisos, this specialist report’s advice is generally clear and
strongly argues its case for greater prescribing caution. One reservation is
that the advice lumps in autistic people with all other learning disabili-
ties and generalizes that usual dosing practices will be fine for addressing
mental illness when it occurs. Much anecdotal evidence says that autistic
people often have atypical reactions including super sensitivity to drugs.
As Defilippis and Wagner [14] suggest, “Children and adolescents with
autism spectrum disorder appear to be more susceptible to adverse effects
with medications; therefore, initiation with low doses and titrating [adjust-
ing the dosage] very slowly is recommended.” Also, neither they nor the
Care Quality Commission (a public regulator of health and social services
in England) note the need for staff medication training. The latter says
(2017) “We will not consider it to be unsafe if providers can demonstrate
that they have taken all reasonable steps to ensure the health and safety
of people using their services and to manage risks that may arise during
care and treatment.” Since “reasonable steps” will of course include follow-
ing instructions from doctors, this regulation can only have a protective
impact if the doctors are also changing their practices: perhaps the current
alliance between the NHS and the behaviourists (the autism and learning
disability campaign Stopping Over Medication of People, or STOMP)
mayhavethepowertochangethose.
Sadly, it seems there has been little or no real progress this century—yet
the very existence of these reports shows that the zeitgeist may finally have
penetrated Bedlam. We may have helped let it in.
62 D. Murray
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