Stoke-on-Trent Clinical Commissioning Group
Herbert Minton Building
79 London Road
Stoke-on-Trent
Staffordshire
England
ST4 7PZ
Dear Members of Stoke on Trent Clinical commissioning Group.
My daughter was diagnosed with an extremely complex and challenging form of Autism called
‘Pathological Demand Avoidance Syndrome’ by Phil Christie at the ‘Elizabeth Newson Centre’ in May
2011. This condition is neither recognised or understood in Stoke on Trent which meant that my
referral was self-funded at a cost of £2600.00 and I have been flying solo in an effort to understand,
guide, support and provide my daughter with successful strategies ever since.
Because ‘PDA’ is not currently included in any of the diagnostic manuals there is much debate
between professionals as to if this condition actually exists as a separate sub group within the
‘Autism Spectrum’ or if the profile of these individuals can accurately be explained by the current
labels that are already included in the diagnostic manuals. E.G. PDD NOS/Atypical Autism and ODD
or Asperger’s and ADHD are two very common ones.
As a parent I can confirm that this condition does exist, that it is very real and that, no, these
individuals and their unique profile cannot be explained by a mix and match of other labels which
has recently been verified by research (please find enclosed). The correct label of ‘PDA’ is crucial for
understanding the individuals affected and more importantly the PDA strategies are the ‘only’ ones
that work.
When Mollie was diagnosed, PDA was not recognised by Stoke on Trent CAMHS or by the ASD
Diagnostic Team at ‘The Boat House’ or in fact by any health professionals and sadly I believe that
this is still the case today.
Since Mollie’s diagnosis there has been a growing movement of awareness and research about PDA.
A few years ago a search on google would yield few results but now, just three years later, a similar
search will find countless articles, websites, support groups and blogs all relating to PDA.
PDA is now being diagnosed and recognized in increasing numbers by clinicians, local authorities,
social services and education authorities. Getting a diagnosis and appropriate support for your child
with PDA is however very much a postcode lottery depending on your local authority.
I am appealing to you to seriously discuss and consider the possibility of acknowledging the
existence of PDA and therefore being able to offer the appropriate service’s to parents. Staff within
CAMHS and the ASD Diagnostic Team at the Boat House would need to be appropriately trained in
order to identify PDA and to offer the correct advice, support and help to parents.
I have educated myself in all areas of Asperger’s and PDA to a very high standard. I have single
handed, with no support from CAMHS or any other health services, had to educate myself and fight
tooth and nail for my daughter’s needs and ours to be met. I have, without any support from health,
been left to independently nurture, teach, guide and support my daughter while also trying to cope
with living with a condition that is extremely complex and challenging. Without the internet and
support from parent groups my child would now undoubtedly be in care. Life did get that bad and
was made all the worse because there was no support, help, guidance or education from the very
organisations that should have been my first port of call.
Identifying PDA as a separate and definable diagnosis within the 'Autistic Spectrum' puts this profile
of children into a collective group with the correct diagnosis, understanding, strategies and the
correct signpost for others to follow.
It is absolutely crucial that PDA is accepted and diagnosed in Stoke on Trent. Without diagnosis,
the correct early intervention and adequate support the long term outlook for these individuals
and their families is extremely bleak. This condition is so difficult to live with and would bring the
strongest of parents falling to their knees. Combine this with having to fight left, right and centre
to be listened too, understood and helped really is often the straw that breaks the camel’s back.
Until health professionals are ‘PDA AWARE’ how can they possibly offer any support to the
individuals and their families affected by PDA. In fact until they are ‘PDA AWARE’ any support or
strategies that they may suggest will undoubtedly just make an intolerable situation completely
unliveable!
Why is a ‘Correct Diagnosis’ so vital?
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A diagnosis of PDA immediately signposts parents to the correct support, strategies and
support groups.
Parents can research the literature available on PDA so that they can better understand their
child as well as support them. An understanding of PDA can help parents to understand
what drives the behaviour.
The strategies that are successful for children with PDA are unique to this diagnosis. Failure
to diagnose a child with PDA means that parents may never have the opportunity to use the
correct strategies or to have an accurate understanding of their child.
Failure to diagnose PDA can lead to an incorrect diagnosis which neither adequately
describes the child, her difficulties nor provides the correct strategies. E.G. Strategies that
are usually successful for children with ASD or strategies that are usually successful for
children with a conduct problem do not tend to be successful for children with PDA. Possible
diagnosis clinicians may give; using the labels that are currently in the diagnostic manuals, in
order to describe these children may be ASD with comorbid conduct problems and
emotional problems. None of these labels accurately fit the child with PDA and more
importantly the strategies are unlikely to be successful.
Another incorrect diagnosis that clinicians may use to describe children with PDA is
‘Attachment Disorder’ this can cause huge upset for parents because it implies that the
child’s condition is the result of a lack of nurturing within the home, even when there is no
evidence of this.
The correct diagnosis of PDA means that the child can have the correct provision, support
and understanding implemented within an educational setting.
Many clinicians don’t believe in diagnosing or ‘labelling’ at all. Instead citing that they
believe in looking at the child as a whole rather than as a condition and that simply providing
the correct strategies for the individual is the best way forward. I really do not understand
this ethos at all. Why waste valuable time trying to find the best strategies for a child when
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a diagnosis gives you a fast track signpost to the recommended strategies which can then be
tailored to the individual child.
A set of strategies does not give the parents any understanding of the underlying condition
or the difficulties that are driving the behaviour.
A diagnosis is enduring over time and will provide understanding, strategies and an
immediate signpost for the individual for life. A set of strategies without a diagnosis does
not and professionals who come into contact with the individual, in the future, may attempt
to make their own diagnosis. They may disagree with previous successful strategies and
insist on a return to more traditional strategies in the belief that tried and tested
behavioural support has to be the way forward. For the individual with PDA this would be
disastrous!
An accurate diagnosis of a physical ailment is crucial for the correct understanding and
treatment plan. If a child is physically ill it is deemed normal for parents to want to know
what the problem is, for a diagnosis to be made and for a relevant treatment that is
successful for that illness to be administered. If our child has a neurological condition we
want to be shown the same courtesy and respect. We are not trying to label our child for
the sake of it. We simply want our child’s neurological condition to be specifically identified
so that we can offer our child the best psychological intervention possible.
A diagnosis is essential in order to access many services and support. E.G. Social Service’s
‘Outreach Service’, which provides families with precious respite, will not support families
whose children do not have a diagnosis. Again, the ethos of CAMHs in some areas, to not
assess and diagnose first and foremost baffles me.
I cannot stress enough how vitally important the identification, acceptance, understanding and
knowledge of PDA is. With the correct strategies my daughter is now coming on in leaps and
bounds. We did it our way and it was the right way but what about the children whose parents
never understand or find the right way. They need to be signposted by you the ‘professionals’.
I feel that my daughter and I were extremely let down and neglected by Stoke on Trent Health
Services. Please don’t allow this to happen to any more families!
“Just because a condition is not in a diagnostic manual does not and should not mean that the
condition doesn’t exist. The official line from the department of health is that clinicians should use
their own clinical judgment. Refusing to diagnose or to accept a private diagnosis of PDA from a
professional of impeccable professional standing, not on clinical judgment, but on the omission of
PDA from the two diagnostic manuals is choosing to not “exercise clinical judgement”. In the case
of the ICD-10 refusing to diagnose outside of the manuals is to refuse to accept nearly 25 years of
research and improvements in practice. In any other field of medicine (or indeed most other
professions) someone who refused to take on board new information and rigidly stuck to the
accepted practices of 25 years ago would be struck off as incompetent. In no other field of
medicine would it be acceptable to say that we will wait for text-books to catch up with research
before we sanction a diagnosis – indeed, it would be a scandal in any other field if referrals were
only allowed to clinicians who stuck to treatments that research had shown ‘not to work’ until
diagnostic manuals had caught up. “We only diagnose what is in the manual” is not an acceptable
or tenable position.
Parental Quote 2014
Thank you for taking the time to read this letter and I can only hope that you do decide to give my
request some serious consideration.
Please do not hesitate to contact me should you wish to discuss any aspects of my request.
Yours faithfully
Jane Sherwin (Mrs)
www.understandingpda.com
https://www.facebook.com/pathologicaldemandavoidance
https://twitter.com/lifewithPDA
janesherwin@outlook.com
Research
The following research was undertaken to explore the similarities and differences between three
different groups of individuals in order to substantiate if the PDA group was, in fact, unique. I have
compiled the following information from this research in order to dispel the common misconception
that PDA is simply another term used to describe individuals with either conduct disorder or with
ASD and co-morbid ODD. I would be very grateful if you could take the time to fully read and digest
the following information.
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Research conducted by Elizabeth O’Nions, Essi Viding, Corina U Greven, Angelica Ronald and
Francesca Happe at the institute of Psychiatry, King’s College, London: Exploring the Behavioural
Profile of Children with PDA. Published in 2013 ‘Autism: The International Journal of Research and
Practice’.
This research has gone some way to identifying the distinct profile of children with PDA when
compared to children with traditional ASD and children with Conduct Problems E.G. ODD & CD
(Oppositional Deviant Disorder and Conduct Disorder).
Results of the Research
The CAST (Childhood Asperger Syndrome Test) screening tool was used to measure autistic traits.
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Children with PDA and children with ASD both had similar scores on a ‘measure of autistic
like traits’ (CAST), both scored as having similar levels of difficulties in social interaction,
communication, difficulties with peers and so on. Both the ASD and the PDA group were in
the most affected 1% of the population sample for CAST total score.
The PDA and the ASD group scored considerably higher than the Conduct Problems group on
a total CAST score.
The difficulties that children with PDA had with ‘Autistic Like Traits’ differentiated them from
the group of children with Conduct Problems which indicates that PDA is not just another
name to give to children with behavioural difficulties.
Research using neurocognitive tasks is needed to explore whether apparent behaviour
overlap between the ASD group and the PDA group reflects similar or separable underlying
social processing difficulties.
Differences between the ASD group and the PDA group with regard to Autistic Traits
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Children with PDA appeared to have better social imagination/empathy, eye contact and
conversational skills than you would typically expect to see in children with ASD.
Children with PDA scored higher than those with a typical ASD presentation for having
difficulty understanding the rules of polite behaviour, turning the conversation around to
what they wanted to discuss and imposing their routines on themselves and others.
Children with PDA respond best to spontaneity humour and unpredictability which is very
different to the routine and structure that tends to be successful for the ASD group.
PDA is described as showing a fairly balanced gender distribution in contrast to the strong
male bias in Classic Autism and Asperger’s.
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The PDA group had more difficulty with conduct problems, emotional issues, pro-social
behaviour, total childhood behavioural difficulties and higher levels of parental stress than
the ASD group.
The obsessive need for control and pathological avoidance of simple every day demands
including avoiding demands to complete tasks that they enjoy or simple demands like sitting
down, regardless of the personal consequences, were unique to the PDA group.
The ASPD (Anti-Social Personality Disorder) screening tool was used to measure anti-social and CU
(callous and unemotional traits)
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The PDA group and the Conduct Problem group both scored in the 1% of the population
showing the most difficult behaviour e.g. impulsivity, temper tantrums and poor planning.
Although they both scored in the top 1% of the population the overall score of the Conduct
Problem group was slightly higher than the PDA group.
In this area the PDA group scored significantly higher than the ASD group.
There were no differences between the PDA group and the Conduct Problem group for
narcissism and CU (callous and unemotional traits).
Whether disruptive behaviour in PDA group and the Conduct Problem group is underpinned
by different underlying motivations or neurocognitive deficits remains to be tested.
Differences Between the Conduct Group and the PDA Group in relation to conduct problems and
CU (callous and unemotional problems)
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Children in the conduct problems group may lack respect for authority but they do appear to
be more aware of their pecking order in society. It would be unusual for them to see
themselves as an adult with the right to insist, for example, that a certain adult leaves the
room or a guest leaves the house.
The Conduct Problem group appear to have more social insight, are more likely to respond
to reinforced behavioural approaches and are less likely to display shocking or embarrassing
behaviour that would be deemed weird by their peers E.G. behaving infantile, removing
their clothes, drawing attention to themselves at concert or play, asking personal questions,
making loud inappropriate comments or having a meltdown in front of peers than those in
the PDA group.
Children with Conduct Problems appear to be highly motivated by rewards unlike the PDA
group where the uses of rewards as an incentive do not tend to be successful.
The Conduct Group did not display the same avoidance to everyday demands, obsessive
need for control and lack of social constraint as the PDA group.
The PDA group had more difficulty with peer problems, autistic traits, emotional issues, total
childhood behaviour difficulties and higher levels of parental stress than the Conduct
Problem group.
The SDQ (strengths and difficulties questionnaire) was used to measure child behaviour
problems
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Children with PDA scored higher than both of the other groups for emotional difficulties E.G.
high anxiety and internalizing feelings placing them in the most affected 1% of the
population.
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The PDA group was also in the most affected 3% of the population sample for lack of prosocial behaviour (the psychology of giving, helping and sharing for harmonious group
relations)
The PDA group and the ASD group both scored in the most affected 1% of the population for
peer problems.
The PDA group and the Conduct group both scored in the most affected 1% for conduct
problems.
The PDA group scored significantly higher than the ASD group for conduct problems and
significantly higher than the Conduct group for peer problems. The PDA group scored
significantly higher than both comparison groups for emotional symptoms and total
behavioural problems.
All three groups scored in the most affected 5% of the population for hyperactivity.
Characteristics that are to be Unique to the PDA Group
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The PDA group had higher levels of parent rated anxiety than either of the other groups and
were in the 2% of the population sample with the highest level of anxiety.
Children with PDA scored higher than both of the other groups for emotional difficulties E.G.
high anxiety and internalizing feelings placing them in the most affected 1% of the
population. This could be consistent with the hypothesis that individuals with PDA find
demands affectively aversive, or seek to control because of high anxiety.
Children with PDA also scored higher than both of the other groups for total childhood
behavioural difficulties.
The obsessive need for control and pathological avoidance of simple every day demands
including avoiding demands to complete tasks that they enjoy or simple demands like sitting
down, regardless of the personal consequences, were unique to the PDA group.
Summing Up
Given the small sample size and other limitations the research paper does suggest that these
findings should be considered preliminary until they are replicated in a larger group.
It is quite apparent that the PDA group exhibit a behavioural overlap between the ASD group and
the Conduct Problem group. This may lead many to assume that PDA is simply another term used to
describe an individual with ASD, co-morbid conduct problems and extreme emotional difficulties.
However this does not accommodate the difficulties that are unique to the PDA group and are not
exhibited by either of the other two groups. Neither does it explain the atypical presentation of ASD
and ODD behaviours that were noted in the PDA group. In addition current educational or
therapeutic provision for ASD children with conduct problems does not seem to suit those described
as having PDA.
The term PDA may well reflect disturbances in more circumscribed socio cognitive pathways
associated with social reciprocity or processing of incoming social cues. These hypotheses must be
explored using cognitive level paradigms.
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There have now been an increasing number of papers written and published about PDA.
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Pathological Demand Avoidance Syndrome, diagnostic criteria and relationship to autism
and other developmental coding disorders; Elizabeth Newson, Child Development Research
Unit, University of Nottingham; 1989
Pathological Demand Avoidance Syndrome: a statistical update; Elizabeth Newson; Durham
Conference; 1996
Pathological Demand Avoidance Syndrome: discriminant function analysis demonstrating its
essential differences from autism and Asperger’s syndrome; Durham Conference; 1998
Communication development of children with Pathological Demand Avoidance Syndrome;
Charlotte Graham-White; Early Years Diagnostic Centre, Nottingham; 2002
Helping your child with PDA to play; Josephine Carlile; GAP, 12, 2, 2011
Educational and handling guidelines; Elizabeth Newson in consultation with Phil Christie
How does PDA present in a play based environment?; NORSACA
Strategies used to discover PDA in a play based environment; NORSACA
Elizabeth Newson et al (2003) Pathological Demand Avoidance Syndrome: a necessary
distinction within the pervasive developmental disorders; Archives of Diseases in Childhood.
Phil Christie (2007) The Distinctive Clinical and Educational Needs of Children with
Pathological Demand Avoidance Syndrome, Guidelines for Good Practice; Good Autism
Practice Journal.
Peer reviewed journal articles
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Elizabeth Newson et al (2003) Pathological Demand Avoidance Syndrome: a necessary
distinction within the pervasive developmental disorders; Archives of Diseases in Childhood.
Phil Christie (2007) The Distinctive Clinical and Educational Needs of Children with
Pathological Demand Avoidance Syndrome, Guidelines for Good Practice; Good Autism
Practice Journal.
O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2013) Development of the 'Extreme
Demand Avoidance Questionnaire' (EDA-Q): Preliminary observations on a trait measure for
Pathological Demand Avoidance; Journal of Child Psychology and Psychiatry.
O’Nions E, Viding E, Greven CU, Ronald A & Happé F (2013) Pathological Demand Avoidance
(PDA): exploring the behavioural profile; Autism: The International Journal of Research and
Practice.
Current Screening Tools for PDA
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The Diagnostic Interview for Social Communication Disorders (DISCO) (Wing, L et al 2002)
contains 17 items targeting PDA related behaviours
A parent report questionnaire for PDA (EDA Q) has been developed to identify individuals
with an elevated risk of having a profile consistent with PDA. The EDA-Q should not be
considered a diagnostic test. For diagnosis, a thorough assessment by an experienced
professional is required. The EDA-Q has been developed as a part of ongoing research into
PDA:
Extreme demand avoidance questionnaire (EDA-Q)
To be completed by parent and/or teacher. One box to be ticked per question.
Answer the following questions as not true / somewhat true / mostly true / Very true
1 Obsessively resists and avoids ordinary demands and requests.
2 Complains about illness or physical incapacity when avoiding a request or demand.
3 Is driven by the need to be in charge.
4 Finds everyday pressures (e.g. having to go on a school trip/ visit dentist) intolerably stressful.
5 Tells other children how they should behave, but does not feel these rules apply to him/herself.
6 Mimics adult mannerisms and styles (e.g. uses phrases adopted from teacher/parent to tell other
children off).
7 Has difficulty complying with demands unless they are carefully presented.
8 Takes on roles or characters (from TV/real life) and 'acts them out'.
9 Shows little shame or embarrassment (e.g. might throw a tantrum in public and not be
embarrassed).
10 Invents fantasy worlds or games and acts them out.
11 Good at getting round others and making them do as s/he wants.
12 Seems unaware of the differences between him/herself and authority figures (e.g. parents,
teachers, police).
13 If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick).
14 Likes to be told s/he has done a good job.
15 Mood changes very rapidly (e.g. switches from affectionate to angry in an instant).
16 Knows what to do or say to upset specific people.
17 Blames or targets a particular person.
18 Denies behaviour s/he has committed, even when caught red handed.
19 Seems as if s/he is distracted 'from within'.
20 Makes an effort to maintain his/her reputation with peers.
21 Uses outrageous or shocking behaviour to get out of doing something.
22 Has bouts of extreme emotional responses to small events (e.g. crying/giggling, becoming
furious).
23 Social interaction has to be on his or her own terms.
24 Prefers to interact with others in an adopted role, or communicate through props/toys.
25 Attempts to negotiate better terms with adults.
26 S/he was passive and difficult to engage as an infant.
How to score the EDA-Q
Questions 1 - 26 (apart from questions 14 and 20)
Not true = 0
Somewhat true = 1
Mostly true = 2
Very true = 3
Questions 14 & 20
Not true = 3
Somewhat true = 2
Mostly true = 1
Very true = 0
Results
For children aged 5 to 11 a score of 50 and over...
For children aged 12 to 17 a score of 45 and over...
...identifies individuals with an elevated risk of having a profile consistent with PDA.
The EDA-Q should not be considered a diagnostic test. For diagnosis, a thorough assessment by an
experienced professional is required.
The EDA-Q has been developed as a part of ongoing research into PDA:
O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2013)