Like most people I have been following the recent news
stories about young people with autism and the PDA profile carefully. The first case to be highlighted was that of
Bethany, a seventeen year old girl with autism and the PDA profile. From what I can gather, Bethany’s family had
tried (unsuccessfully) for years to access the most appropriate support for
her. By reaching out and acknowledging
that they (and she) were struggling, the eventual outcome was that she was
sectioned under the Mental Health Act, and has been detained in a number of
hospitals ever since. In her current
placement, she has spent an inordinate amount of time in a seclusion room,
medicated and isolated from her peers, deprived of fresh air and her dignity
(her observation levels do not even allow her bathroom privacy). Bethany’s case is sadly not the only one
which I have personally come across in the course of my clinical work. There are many young people in similar
circumstances across the country.
This raises the question of how do things ever get to the
point of a young person needing to be detained in hospital, frequently with no
real plan in place to move them back into the community.
The Victoria Derbyshire programme on BBC2 featured a number
of young people who were all displaying behaviour that is both upsetting for
them and their families, and could potentially lead to them suffering the same
fate as Bethany. All of the families interviewed pointed to the lack of
diagnostic assessments in the first place, and a complete absence of support
for families and young people in need.
As someone who has had experience of working in both NHS
diagnostic teams, and as a clinical psychologist in Tier 4 inpatient services,
my aim with this article is to provide a (hopefully) balanced view of what the
issues actually are within both of these environments.
The NHS team I originally worked in was set up late 2002,
and commissioned to see between 40 and 60 young people per year. By the time I left in 2011, this number had
increased to 360 referrals per year. The
resources available (and consequently the size of the team of clinicians) had
not increased by this amount, so we were always faced with a growing waiting
list for assessment and the inability to offer anything more than assessment
and diagnosis. Currently, waiting lists
for assessments can be as long as five years in some areas. It is not easy to find appropriately trained
and qualified clinicians, and diagnosing a child can be a long and
time-consuming task if it is done properly – psychologists in particular are
trained to ‘formulate’ a hypothesis, or reason, for a particular behaviour or
presentation. This means that the
clinician needs time to assimilate information from various sources, and to
look at both risk and protective factors in that child’s environment. It is not good practice to rely on one or two
assessment questionnaires, nor a brief meeting with a child and their
family. The risk here is that either
something will be missed, and the child will not receive an appropriate
diagnosis, or that young people may be incorrectly given a diagnostic label
which then shapes the way people manage them in the future.
Unfortunately though, without an assessment or diagnosis,
families are often left in the wilderness with no support. This can then lead to a crisis situation
developing and parents reaching out to professionals who have no real
understanding of the complexity of the issues facing many families. Admitting a child to inpatient services should be a last
resort – a short term measure designed to keep them safe and to assess the
young person. It was never designed as a
long-term solution.
Given the nature of a support worker’s job, it can be hard
for organisations to recruit and retain committed and appropriately experienced
staff. This can, and often does, lead to
an over-use of agency staff. Agency
staff do not tend to know the patients as well as the regular care staff, and
may not always have time to read care and support plans. Obviously for patients (both with and without
Autism/Learning Difficulties) this can be unsettling, and often leads to more
‘incidents’ which may have been avoided had regular staff been on duty.
For some reason, it is also hard to recruit permanent Child
and Adolescent Psychiatrists in some areas.
This means that roles are often filled by locum Psychiatrists, who may
be adult, not child and adolescent trained.
Adult psychiatrists do not have specific training in autism. It also means that there are frequent changes
in lead clinician, which can lead to disjointed care, and frequent changes in
medication.
An ATU is not always the most appropriate environment for
young people. Hospitals are unfamiliar
and often too bright and too noisy.
There is little privacy. Low
secure units, where the perimeter is surrounded by a high fence can also be
terrifying for the young person and make them feel as if they are in
prison. In addition, they are often
hundreds of miles away from their parents and friends. This makes visiting difficult, and also makes
it almost impossible to carry out family work.
My own personal opinion is that young people with autism and
learning difficulties (including those with complex profiles like PDA) do not
need a psychiatry-led medical service.
There is a place for medication and support for mental health issues,
but the majority of young people are better served by a multi-disciplinary
approach – incorporating psychology, speech and language therapy, and
occupational therapy. All behaviour is a
form of communication. Therefore, a
formulation approach, where possible causes for behaviour are examined and put
into context, seems far more sensible.
Many young people, by the time they arrive in an ATU, will
have had many years of trying to cope in an environment that they find
difficult. Parents are often burned out
and crying out for help. Early support
is not always available, and many parents find themselves unfairly blamed for
their child’s behaviour. Young people
may go on to present with features of PTSD and even catatonia (where they
simply switch off). Managing this
distress by giving someone anti-psychotic medication merely damps down some of
the anxiety and anger, it does not deal with the underlying cause or help them
to recover from it.
There is often nowhere, and no team, for the young person to
move on to when they are discharged from hospital as Local Authorities do not
have either the resources or funding to make sure this happens. This leads to young people being kept in
hospital for far longer than they actually need to be.
This helps no-one.
These environments are not, and cannot be, truly therapeutic. I challenge anyone not to become stressed and
start displaying ‘inappropriate behaviour’ if they are locked up 24 hrs per
day, with no peace and quiet, and little or no privacy.
What is needed is far better support for parents and young
people BEFORE situations reach crisis point.
This means much better understanding of the ways in which autism
presents, a timely assessment and diagnostic process and a better understanding
of PTSD and trauma. Finally, there needs to be a stop to instant ‘parent
blaming’ and a move towards a formulation-driven collaborative approach. It would also be helpful if the views of the
autistic community were sought – maybe professionals need to engage in more
talking with, rather than ‘doing to’, autistic individuals.
Thanks for this Judy, I wholeheartedly agree.
ReplyDeleteYou have written our entire story.
ReplyDeleteIf only things had been different and we had recieved that early diagnosis, then Beth's life would have been so much better.
I pray things improve.
Beth's Dad.
Thank you,Judy. So well expressed and a mirror of our own experiences. The lack of appropriate support has devastated our lives.
ReplyDeleteI feel I can completely relate, my daughter is in the same position same struggles and battles. I am fighting on a daily basis to get my daughter the help and support she needs and deserves. . I read this article about Bethany and emailed the journalist that covered this story asking if we could meet with other parents in similar positions I asked if she could collectively raise concerns and highlight the treatment of our children so that we could get the appropriate help for our children. Sedation and medication is not the only answer. She did not reply.
ReplyDeleteThis comment has been removed by the author.
DeleteI also agree with Beth’s dad if the school had listened to me when my daughter first started showing signs I would not be in this position today. If anyone has any advice on how best to fight the system and get our children the appropriate help and back home with their families where they belong please contact me
ReplyDelete