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

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👉 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

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#PDA Awareness Day- Sunday 15th May 2016

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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!

Look at your own behaviour first!

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I wonder how many of us have considered our own behaviours which may display themselves as: Too chatty, too loud, too quiet, lack of empathy, lack of self awareness, intolerant, excitable disposition, too demanding, unrealistic expectations, no expectations, lack of consistency, superiority, self importance, arrogance, thinking we know best mentality. 

Whenever we consider the behaviours of a child with ASD, it may also be helpful to first reflect on our own behaviours and the impact we may have upon another. Many of us have the ability to be flexible in our approach; however, many of us may be steeped in old school mannerisms, know-all attitudes and textbook training institutions. 

So lets break down this ASD behaviour… Behaviour may be inappropriate (inappropriate only to us) both verbally and physically – Verbally is often learnt through inappropriate settings, older siblings, tv, peers, bullies or by other means. When a particular shocking’ word is used this word may become reinforced by the recipient. For example, a child might swear at a teacher, the word is reinforced by the child being removed from the classroom (this is a relief for the child) especially as the classroom may have been over stimulating and uncomfortable on a sensory level, noisy, scuffing chairs, laughing, talking, teacher demanding. 

Or maybe the child took flight (ran off), or became physically aggressive; so what is aggression? It is a meltdown, so what is that? It is a visual cry for help. It is a panic attack, what is the panic? The panic is the adrenaline rush caused by anxiety, which may be due to fear, what may be the cause of fear? A sense of being out of control; a sense of failure; being unable to fulfil demands or maybe being uncomfortable in an unfamiliar situation or environment. 

Remember once you have met one child with Autism Spectrum Disorder you have only ever met one child with Autism Spectrum Disorder.

Help us to make 15th May PDA AWARENESS DAY

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Hold a cake sale/hand out leaflets/put up posters/hold a sponsored event/inform your MP/create a twitter storm/flood fb – Whatever it takes to inform your local neighbourhood about PDA – If we all get behind this we can make the difference.

PDA Contact Group are working hard to raise the £5000 needed to set up as a charity, please help in whatever way you can, every penny helps – Thank you xx