👉 What to reply when told PDA (Pathological Demand Avoidance) does not exist/is not recognised in your area 👈 By Planet Autism

Standard

Planet AutismLiked

👉 What to reply when told PDA (pathological demand avoidance) does not exist/is not recognised in your area 👈

A clinician can diagnose a condition which is evident before them, it does not need to be in diagnostic manuals to do so, the manuals are about allocating diagnostic codes to descriptions of conditions. Having said that, PDA as an ASD, is present in diagnostic manuals as an ASD diagnostic code. For the DSM-V it would be diagnosed as ASD as they diagnose all ASDs under one umbrella now, DSM-V code 299.0 (autism spectrum disorder). For the ICD it would be either (ICD10 F84.0 (autistic disorder), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified), but noted on diagnostic reports as ASD-PDA subtype, ASD-PDA profile, ASD with demand avoidance profile etc.).

PDA is a specific profile of behaviours and is an ASD. You cannot deny a profile of behaviours exist! It does constitute an ASD subtype which isn’t individually mentioned in the diagnostic manuals – yet. But it’s looking likely that the ICD11 will follow with the DSM-V diagnosing all ASDs under one umbrella, so from that perspective it’s irrelevant. However, PDA does need different strategies and support.

This is why there is a DfE endorsed educational guidance document:

“The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice”
http://www.aettraininghubs.org.uk/…/5.2-strategies-for-teac…

Read this excellent article by Dr Judy Eaton (consultant clinical psychologist with years of experience in NHS and private sector, expert in ASD as well as PDA): https://help4psychology.blogspot.co.uk/…/back-to-school-for… she explains very well how families suffer when LAs and NHS take this attitude of PDA not existing and clearly states that PDA does exist.

https://www.pdasociety.org.uk/education/teachers-guide

“Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.”

There is a growing body of research about PDA:

https://www.pdasociety.org.uk/resources/published-articles

https://sites.google.com/site/lizonions/publications

“Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

Point out that if the Department for Education recognises it, that’s central government and that should be enough. The NAS recognises it and they are the UKs major autism charity which is government funded. www.autism.org.uk/about/what-is/pda.aspx

Look on the NHS England website for your area’s Sustainability and Transformation Plan (STP) www.england.nhs.uk/stps/view-stps/ and see if your local plan says anything about making care uniform across the region, losing the postcode lottery, improving varied care etc. because there may be a town in your area which recognises PDA and another that doesn’t. You can use this information as the STP covers everything, including mental health issues.

Have answers for every denial they offer. Don’t passively accept what they say, a lot of it is based in ignorance.

Known NHS areas that have diagnosed PDA (there will be others):

Kilmarnock, Ayreshire and Arran, Scotland
Stratford-upon-Avon, Warwickshire
Stroud, Gloucester, Gloucestershire
Bradley, Stoke, Staffordshire
Liverpool, Merseyside
Todmorden, Lancashire
Sheffield, Yorkshire
Stourport-on-Severn, Worcestershire
Hawley, North Hykeham, Lincolnshire
Wolverhampton, Midlands
Nottingham, Midlands
Northampton, Midlands
Lincoln, Midlands
Birmingham, Midlands
Bristol, Avon
Slough, Berkshire
Reading, Berkshire
East Sussex
Andover, Hampshire
GOSH (NHS) London
Guildford, Surrey

Advertisements

Why did my PDA son have to fail in five schools before I was listened to?

Standard

This post is with our huge thanks to:
Special Needs Jungle – http://www.specialneedsjungle.com
for their continued support in raising the profile of Pathological Demand Avoidance Syndrome.

Why did my PDA son have to fail in five schools before I was listened to?

#PDA Awareness Day- Sunday 15th May 2016

Standard

PDA Awareness Day is Sunday 15th May (thats this weekend:-)

As its National Limerick Day today I thought Id make up a little limerick for Sunday… If you like it, please feel free to share especially on PDA Sunday x

Autism they said is like Rainman
PDA they said is naughty kid syndrome
They have closed minds bound by fear
and would rather we all just disappear.

Judgemental faces they simply cannot relate
Instructing us to medicate & sedate
They really don’t want to understand
Nor will they ever try to lend a hand.

Don’t look down on us with expression so glum
We simply march to the beat of our own drum
My last point for your personal reflection
is wake up people, we are all on the spectrum!

PDA Awareness Day Wednesday 15th May 2013

Standard

 Thanks to Graeme Storey for creating this wonderful resource page ahead of PDA Awareness Day 15th May – http://www.thepdaresource.com

PDA awareness day – 15th May 2013

Image

PDA awareness day - 15th May 2013

BIG NEWS: 15th May 2013 lets raise awareness and acceptance and offer support for the whole family

PDA conference slides

Standard

http://uk.search.yahoo.com/r/_ylt=A7x9QV4SDSBRUQUAMHxLBQx.;_ylu=X3oDMTE2czBjOW9pBHNlYwNzcgRwb3MDMTAEY29sbwNpcmQEdnRpZANTTUVVSzIyXzg0/SIG=15ios6bjl/EXP=1361083794/**http%3a//www.autism.org.uk/~/media/NAS/Documents/News-and-events/NAS-conferences/Pathological-Demand-Avoidance/PDA-Conference-Plenary-session-Phil-Christie.ashx

PDA information

Standard

All the PDA information and support can now be found in one place at:

http://www.pdasociety.org.uk

Includes their wonderful resource page at:

http://www.pdasociety.org.uk/resources

Also a link to the educational and handling strategies at:

http://www.pdasociety.org.uk/education/educational-and-handling-guidelines

Formerly known as the PDA Contact Group, the PDA Society aims to offer support, advice and information to anyone involved with an individual with PDA, whether suspected or diagnosed, child or adult.

The PDA Society is a voluntary organisation, overseen by a management committee, each of whom is a parent of a child with PDA.

The PDA Contact Group was originally set up in 1997 to put people with an interest in PDA in touch with each other, which we still do today through our discussion forum. The change in name to the PDA Society is a reflection that we are becoming more than a ‘contact group’ and see ourselves as the voice for PDA, running awareness campaigns and sharing information.

Objectives include:

to raise awareness and understanding about the condition
to signpost people towards gaining a diagnosis
providing a telephone support line
sending people information through email or post about PDA
putting families in touch with each other locally
imparting good quality information about the condition as new research comes out
and providing people with information to set up their own local support groups.
We will fund these objectives through direct donations to the group, proceeds from awareness days, and any funding we manage to secure through grants/awards. We aim to become a registered charity in the future to be able to further those aims. In 2013 we were successful in obtaining a Big Lottery Fund grant to fund our Awareness Matters campaign, which included the production of this web site.