Therapy

Cry for freedom

Some 15 years ago the UK government
proposed to make short work of moving
people with learning disabilities and/or
autism from long-stay hospitals into
community settings. But more
than 3,000 are still incarcerated
and can be forced into harmful
treatments. Dr Mitzi Waltz
examines whats going wrong

Special
Therapy
report

The year was 2001, and change

seemed to be in the air where
people with intellectual disabilities
and/or autism were concerned.
The white paper Valuing People
heralded a new policy: fasttracking the move of people from
long-stay hospitals into community
settings, with access to specialist,
person-centred local services, paid
for with personal budgets.
It happened for some, but not
for all. In 2010 came a progress
report, Valuing People Now, which
set out a three-year strategy to
finish the job (and stated clearly
that people on the autism spectrum,
regardless of their IQ, were to be
considered under these policies).
Along the way there was the Autism
Act in 2009, which also made clear
points about how people with
autism should be treated by the
UKs National Health Service and
other government departments.
So why are more than 3,000
people with learning disabilities
and/or autism the vast majority of
them adults still trapped in longstay hospitals, according to last
years Learning Disability Census?
And what can we do about it?

Not the answer

The crux of the matter is that
autism is being treated like a
mental health problem, when its an
inborn cognitive difference. When
people on the autism spectrum
become distressed due to sensoryperceptual issues, communication
difficulties or limited understanding,
antipsychotics are not the answer.
But as the old saying goes, when
all you have is a hammer,
everything looks like a nail.
So when autistic adults are in
need of help but no specialist
autism services are available, they
are referred to mental health
services, within which psychiatric
medications are the main tool on
hand. The next step can be
sectioning being placed in a
mental health facility and kept
there until others decide the person
should be released, during which
time they lose the right to refuse
consent to forced treatment.
Of course, like anyone, autistic
adults can have an additional
mental health difficulty but there
is ample research evidence
30 Au t i s m | e y e I s s u e 2 2 2 0 1 6

www.autismeye.com

www.autismeye.com

Dr Mitzi Waltz is a
senior researcher at
the Disability Studies
research organisation
in the Netherlands, a
freelance writer and
editor, and an expert
witness in autismrelated issues

showing different responses to

medication among people with
autism, as well as potentially lifelimiting side effects. Treatment
success rates are low, but
psychiatrists and GPs continue to
prescribe and hospitalise, usually
because they simply dont know
what else to do.
The result for families is that
children and adults on the autism
spectrum can find themselves
sectioned under the Mental Health
Act, or forced to take psychiatric
medication under Community
Protection Orders, even when they
get worse instead of better.
There are other sectioning
powers to be aware of, under the
Mental Capacity Act and as a
result of criminal justice
procedures. These, too, can at
times be misused, although there
are far more safeguards against
compulsory treatment or
hospitalisation under the MCA than
under the MHA.

Creeping concerns
There are times when a specialist,
secure medical setting is the right
place for someone with autism.
I work as an expert witness, and in
cases where a person on the
spectrum has committed a serious
crime and poses a danger to
others, the right facility can provide
a welcome, therapeutic alternative
to prison. When a person is
suicidal and other forms of help
have been tried and failed,
hospitalisation can save their life.
But once sectioning happens,
parents can lose control over the
situation and may find themselves
separated from their loved ones for
months or even years. And there
are creeping concerns that, at
times, the system seems keen to
ensure that individuals remain

Staff are encouraged to

report incidents of
challenging behaviour as crimes
when challenging behaviour may
be the persons only way to
communicate, or is the result of
sensory-perceptual distress

outside of society. An example of

this is when staff are encouraged
to report incidents of challenging
behaviour as crimes, therefore
allowing continued secure
treatment, when challenging
behaviour may be the persons only
way to communicate, or is the result
of sensory-perceptual distress.
Also at issue is whether the
treatments people are receiving,
either in the hospital or the
community, are right for their
needs. And this is something that
we have far less information about
than you might think.

Gross deficiencies
In Scotland, the pressure group
Autism Rights found that the Mental
Welfare Commission did not even
collect statistics on the number of
people with autism receiving mental
health services, much less the
appropriateness or outcome of the
services received. They needed to
file Freedom of Information
requests to force the collection of
information about deaths, injuries
and other adverse events
affecting patients with autism.
It has taken a full-time carer,
not an employee of a disability
charity or a politician, to
investigate and highlight these
gross deficiencies, says Fiona
Sinclair of Autism Rights.

Forced treatment
In England, changes are afoot,
including new policy guidance on
the use of the Mental Health Act
(see Resources, page 33).
Nevertheless, there are still many
cases, such as that of Matthew
Garnett in Northamptonshire,
where people are inappropriately
sectioned, often because local
authorities do not have the will to
commission appropriate
community-based services.
Forced treatment orders can
also cause great harm. In
Scotland, Christine McVicar went
so far as to take her adult son
Andrew to Spain for a while to try
to avoid forced drugging with
Risperidone an antipsychotic
medication that she alleges
caused her son to develop serious
health problems. Now back in
Scotland, Andrew has again
allegedly been subjected to depot
Au t i s m | e y e I s s u e 2 2 2 0 1 6 31

School of Education

Therapy

Are you working or living with children or adults with autism?

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Autism advert 127 x 181.indd 1

Special
Therapy
report

Resources
l Autism Rights (Scotland):
www.autismrights.org.uk/drupal/
l European Convention on Human Rights:
www.echr.coe.int/Documents/Convention_
ENG.pdf
l The Law Society (2015): Deprivation of
Liberty: A Practical Guide. Online at:
www.lawsociety.org.uk/support-services/
advice/articles/deprivation-of-liberty/
l LB Bill (England):
https://lbbill.wordpress.com/
l Social Care Institute for Excellence (2015):
Deprivation of Liberty Safeguards (DoLS) at a
glance. Online at: www.scie.org.uk/
publications/ataglance/ataglance43.asp
l Rights in Reality blog by Steve Broach on
the Law Commission consultation on DoLS:

https://rightsinreality.wordpress.
com/2015/10/30/response-to-the-lawcommission-consultation-mental-capacityand-deprivation-of-liberty/
Its an excellent discussion, informed by the
LB Bill, of current proposals in England.
l UN Convention on the Rights of Persons
with Disabilities (UN CRPD): www.un.org/
disabilities/convention/conventionfull.shtml
l Victoria Butler-Cole (2015): The new Mental
Health Act Code of Practice.
Online at: http://network.autism.org.uk/
knowledge/policy-guidance/new-mentalhealth-act-code-practice
Its a good summary of the recent policy
changes, including a link to the full Mental
Health Act Code of Practice.

@UoBAutism
16/10/2015 11:37:02

Feeling powerless: but Deprivation of Liberty Safeguards

support adults in making their own lifestyle decisions
SOURCES
l Department of Health (2001): Valuing People: A New
Strategy for Learning Disability in the 21st Century:
www.gov.uk/government/uploads/system/uploads/
attachment_data/file/250877/5086.pdf
l Department of Health (2010): Valuing People Now: A
New Three-Year Strategy for People with Learning
Disabilities: http://webarchive.nationalarchives.gov.
uk/20130107105354/http:/www.dh.gov.uk/prod_
consum_dh/groups/dh_digitalassets/documents/
digitalasset/dh_093375.pdf
l HM Government (2009): The Autism Act:
www.legislation.gov.uk/ukpga/2009/15/contents
l Fiona Sinclair (2015): Autism and the madness of the
Mental Health Act, NewsNet Scotland.
Online at: http://newsnet.scot/citizen/autism-and-themadness-of-the-mental-health-act/
www.autismeye.com

injection with Risperidone, with the

side-effects ignored, despite the fact
that he has been shown to improve
when given the right social services
support and alternative treatments.
We now have legal aid for
medical negligence, with a human
rights and disability discrimination
case following, says McVicar.
However, my son is still subject to
the MHA and being forcibly given
the drugs. Although she supplied
expert opinion to the MHA that this
is adding to the original condition
and requested a different
psychiatrist, the familys pleas have
been ignored.
In England, the families and
adults with autism who have
championed the LB Bill (see
Resources, left) have also called for
care and support for people with
autism and learning disabilities to
be to removed from the provisions
of the English Mental Health Act.

Deprivation of liberty
Deprivation of Liberty Safeguards
(DoLs) have become a hot topic in
the past couple of years, as
landmark cases in the UK have
established that a person can be
wrongfully deprived of their liberty
in situations beyond the obvious
injustice of forced hospitalisation
for no good reason. In well-run
services and local authorities, these
developments are driving changes
to practice. They recognise that,
with the right support and advocacy
services, adults with autism or

intellectual disabilities can make

competent decisions about their
own health care, what they want to
do, and where they will live.
Deprivation of liberty can even
arise in a good residential care
facility or a family home. This can
happen if unnecessary compulsory
treatment or legal orders prevent
an individual from exercising free
agency when they should be able
to do so. As the new Mental Health
Act Code of Practice plainly states,
Hospitals are not homes, and most
support for people with ... autism
should be provided in a local
community setting.
It must be said that the inverse
should also apply: homes should
not be hospitals, with those living in
them under surveillance, controlled
and subject to forced treatment.
Research has shown conclusively
that what most adults with autism
and/or learning difficulties need is
support for communication and the
activities of daily living, and better
management of sensory perceptual
difficulties they experience.

Hospitals are
not homes, and
most support for
people with ... autism
should be provided in
a community setting
Medication cannot treat any of the
core symptoms of autism.
In the end, it is individual choice
and freedom, with full human rights
protection as afforded by the
European Convention on Human
Rights and the UN Convention on
the Rights of Persons with
Disabilities (See Resources), that is
at stake. When people with autism
have the right support and their
rights are protected, problems and
the abuses of power will be fewer,
and we will have the tools we need
to handle them.
As long as adults with autism do
not have recourse to the help and
support they need in the community,
the conditions that can result in
deprivation of liberty and harmful
forced treatment will remain.
Au t i s m | e y e I s s u e 2 2 2 0 1 6 33