6 Monday April 4 2022 | the times
life
Q
<
N
My 16-year-old
daughter has been
diagnosed with autism
spectrum disorder
with “significant
pathological demand
avoidance [PDA] traits”. She is on
medication for anxiety, which helps,
but has left her without motivation
to do anything — possibly revealing
that she has underlying depression.
She refuses to attend school, saying
it is overwhelming, rarely washes
or changes clothes, and hardly
leaves her room. Attempts to interact
with her are met with screaming
and refusal.
Child and adolescent mental
health services (CAMHS) has
declined to support her; even private
therapy is hard to access, due to long
waiting lists, and she struggles to
engage anyway.
She is highly intelligent, but
seems to have given up on life. Her
PDA traits mean she is extremely
challenging to parent and we cannot
find any useful guidance on how to
help her not to be so resistant to any
sort of advice, suggestion, request or
instruction. I have given up work to
support her and try to get her into
school, but it is no longer enough. I’m
exhausted and concerned about her.
Carolyn
A
<
N
Your bright 16-year-old
daughter, who has a
life to build, is having
to navigate significant
neurodevelopmental
challenges. These are
clearly a huge struggle for her as well
as you, her family, and are leading to
a failure for her to thrive. She is on
the autistic spectrum and shows
pathological demand avoidance, which
is a profile that describes those whose
main need is to go to sometimes
extreme lengths to avoid everyday
demands and expectations. It is not
a “label” to excuse difficult or lazy
behaviour, but instead a term to
describe difficulties to shape helpful,
rather than harmful, responses and
support. First described by Professor
Elizabeth Newson in the 1980s, PDA
is increasingly accepted as a profile
that is seen in some people on the
autistic spectrum (as well as some
who aren’t).
To begin with, I have to express
concern that, given your daughter’s
complex challenges, CAMHS “has
declined to support her” and I suggest
that this is vigorously challenged. You
can ask CAMHS why it has refused
to support your child and expect it to
outline where your child doesn’t meet
their access-to-service criteria. In
rejecting the referral it should have
signposted you to other sources of
support. I advise that you contact your
NHS trust’s patient advice and liaison
service and consider making a formal
complaint. Also contact your local
Healthwatch, who can provide details
of your local health advocacy service.
The school can get involved to
not only support a further CAMHS
referral from you and your GP, but
also to look at your daughter’s special
education needs provision. Does
she have an education, health and
care plan (EHCP)? This is a legally
enforceable document maintained
by local authorities (LA) that sets
out the education, healthcare and
social care needs of a child or young
person for whom extra support is
needed in school (ie more than a
school can provide within its
resources). Given your daughter’s
age, she can also request one herself.
Once an application is made, the
LA must respond within six weeks
to say whether it will or won’t carry
out an assessment.
If the request is granted, an
education, health and care needs
assessment is undertaken and the LA
will decide whether or not to issue an
EHCP. If the LA refuses to assess —
or refuses, after assessment, to issue
an EHCP — reasons must be provided
and the decision can be challenged via
mediation or a special education needs
and disability tribunal. With a number
of professionals involved (other
professionals who work successfully
with people with PDA include speech
and language therapists, occupational
therapists and physiotherapists), a
Team Around the Child meeting can
be arranged. This would enable the
co-ordination of a package of solution-
focused support to meet the multiple
needs of your daughter.
As with all conditions, autism affects
different people in different ways and
some people with autistic spectrum
conditions also struggle with PDA,
experiencing intense emotions and
mood swings, finding everyday
activities difficult and often feeling a
need to avoid such activities, which is
called “demand avoidance”. The latter
can be obtained via procrastination,
distraction from the demands,
withdrawal and — due to a significant
fear response — anger and aggression.
Remember, the anxiety response is
also known as the fight/flight/freeze
response, so when behaving like this
your daughter is in a state of panic.
There are a number of strategies
that can help to support a person
with PDA. These are described
as low-arousal approaches and
keep anxiety to a minimum and
provide a sense of control. The
PDA Society uses the acronym
Panda: pick battles, anxiety
management, negotiation and
collaboration, disguise and
manage demands, adaptation.
Find the helpful infographic at
pdasociety.org.uk. The aim is
to build a relationship that is
based on trust — where your
daughter feels understood;
flexibility — where she sees
that you can negotiate and
compromise, and strategies
to manage anxiety and
collaboration, so she feels in
control. Language and tone
used are especially important.
I advise that you stop all
“advice, suggestion, request
or instruction” and instead
rebuild your relationship
in a calm and safe way for
her. I wonder if she also feelsMy autistic teenage daughter seems to have
given up on life. How can I help her?
overwhelmed by her diagnoses and
needs time to process what this means
for her.
I suggest that you start with
small steps around self-care since
if this deteriorates it can lead to her
developing worsening depression,
locked down by high levels of anxiety.
It is clear that your daughter needs a
medication review, even though it is
also clear that medication alone is
absolutely not meeting her needs. If
she struggles with eye contact and
discussion, try communication via
SMS or email. Start with asking her
what would help her to feel better
about herself, rather than setting the
small goals for her. Leave a face mask,
nail varnish, art materials, magazines,
anything she enjoys outside her door.
Suggest that she leave dirty washing
outside her door and leave the clean
washing for her to put away.
To get her outside, suggest fun
things you can do together. Start
really small and use humour to find
ways to make requests indirectly.
To build this relationship, imagine
climbing a mountain really slowly and
carefully with her, stopping to take a
breath when needed and stopping and
sitting down when overwhelmed.
To achieve a collaborative
relationship, you and your daughter
can learn more about how she
views the world and how the world
impacts on her. This means that she
feels you are looking to accommodate
her sensitivities and needs via
understanding who she is, rather than
her feeling that she has to fit into your
expectations based on your world
view. There are many resources to
access to achieve this. I recommend
ambitiousaboutautism.org.uk and
online content (across all social media
platforms) made by teenagers who
manage PDA, including a podcast by
15-year-old James who discusses his
PDA and school refusal (about 70 per
cent of children with PDA do not
attend a school): pdasociety.org.uk/
pda-school-avoidance-podcast-with-
james. There are also Facebook
support groups for teens with PDA.
All this can help her to feel
less alone and even find a
community she can identify
with. Links to these and
more resources (including
resources for parents)
can be found at
pdasociety.org.uk/pda-teens.
I appreciate how
extremely challenged you
must feel and see how
giving up your job to
support your daughter
illustrates your level of
concern, but also your
commitment to her.
I encourage you to focus
less, for now, on her getting
things done and instead look
to build a relationship where she
feels that you are calm and
accommodating and so feel less
threatening to her. From there, she
can slowly re-engage, then begin to
tackle aspects of life that feel
demanding and overwhelming.
I wish you all well.Start with
small steps
around
self-care
Ask Professor Tanya Byron
Name a therapy,
and the singer
Will Young has
tried it. Except the
one with llamas, he
tells Michael Odell
W
ill Young
had a
nervous
breakdown
in 2011, but
he didn’t
hide under
a duvet or
sit on his sofa rocking back and forth
hugging a cushion. He embraced it.
He even told the barista at his local
coffee shop about it.
“Even though it was horrible and
frightening, the fact that I believed my
border collie Esme was judging me
was also very funny,” Young says. “And
to be honest, I wish I’d crowed about
it a bit more because I love attention
and it feels liberating to say that.
“I’d like to go on the Graham Norton
Show and when he asks how I am, I’d
say, ‘I’m actually having a nervous
breakdown right now, in front of you.’
That would certainly be different from
all the fake celebrities who pretend
everything is great and wonderful
the whole time, wouldn’t it?”
Still, some of the things Young went
through sound terrible. Not only was
he anxious and depressed, at one point
he was suffering from post-traumatic
stress disorder and “disassociating”
to the extent that he didn’t recognise
his reflection in a mirror. “I was so
traumatised I’d sort of abandoned my
own identity,” he says with a shrug.
To get better he embarked on
the full stack of rehabilitative
treatments. There was some
psychotherapy, of course. But he also
consulted a shaman, did somatic
therapy (exploration of trauma
through yoga and dance) and equine
therapy (you hang out with horses).
He also had cranial osteopathy
and acupuncture, attended a “love
avoidance and addiction” course
and cognitive behavioural therapy
sessions and took up Thai boxing.
I’m fascinated to read that he also
consulted a herd of llamas.
“Llamas? No... I made that one up.
But all the others I’ve done. I’m like
David Attenborough, poking my face
through the bamboo of trauma.”
Young, 43, has been a pop star for
20 years. In 2002 he won the ITV
talent show Pop Idol (one of the show’s
judges, Simon Cowell, later created
The X Factor) and went on to score
four UK No 1 singles and release eight
albums. He even won a Laurence
Olivier award for his role in the West
End musical Cabaret. Early on, Young
also outmanoeuvred the tabloids by
coming out as gay — in those days
they still threatened to “expose”
people’s sexuality.
He still records music and acts, but
it’s his tortuous journey to mental
health that is his focus; his experience‘I’m the
If you have a problem
and would like
Professor Tanya Byron’s
help, email proftanya
[email protected]