Pathological Demand Avoidance PDA A rare form of Autism.

Yiman60

Hi,
Since I can find only one other post about this condition I thought I would share my experiences.
My children were late diagnosis Asbergers due to the horrific lack of knowledge within the NHS , CAMHS and Education System. By my experience there is so little good practise out there most are totally clueless.
I eventually had the youngest assessed again and it was discovered he had ADHD when he was young now has ADD. Normal Autism Stratagies did not work and I eventually came across PDA.
It was recognised in the 1980s but it has not formally been accepted by the medical world which is shocking.
The main source of information comes from the PDA Society Website. Normal Autism Stratagies don't work , you must use PDA Stratagies. This rare type of Autism has a Jeckyl and Hyde Personality, it's like a switch , one minute fine the next boom. The anxiety is off the scale . It's the lengths, some very subtle, others plain refusal to do things and the Role Play, they think they are in charge. They rule their lives and yours.

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

There are support groups throughout the Country , FB Pages. Training Days .

https://www.facebook.com/groups/1129228007099112/

http://www.pdasociety.org.uk/families/support/local-support-groups


The PDA Awareness group has just started in Scotland.

You can have PDA on its own or with ADHD , Asbergers , there are all sorts of combinations.
There is a lot of information on PlanetAutisms blog page under info sheets. This condition is so often misdiagnosed. It's often diagnosed wrongly diagnosed as attachment disorder or poor parentening . So many folks with ADHD get labelled wrongly.

http://evolutian.wixsite.com/planetautism/infofactsheets

Some CAMHS will recognise but very few. There is lots of advise on how to get a referral . It's not easy or straightforward.

There are specialists who will recognise . There is a small list on the PDA site. My friends have used this lady who has masses of experience and years of  outstanding research.

http://drhilarydyer.co.uk

https://allevents.in/norfolk/understanding-pda-the-facts-and-the-fiction-dr-hilary-dyer-£15/908316142646263

Its worth checking on the PDA site. There are Specialist units in Nottingham, Newcastle upon Tyne etc.
.
At the end of the day all the Stratagies of early intervention, help and support are just not there. . There are so many of us trying our utmost to get this condition recognised.

https://www.facebook.com/l.php?u=https://www.change.org/p/scottish-government-give-children-with-disabilities-the-support-they-need-in-school?tk=Z_LhwZ4ysjp_Cxm_lJ7rMNnMqpNg1w8v7fAh5Llu2wU&utm_source=petition_update&utm_medium=email&h=0AQGBr43-AQGp4AGjOfXMCCChX5C3YbCFSswliH4rLHCRgg&enc=AZOu1oEvqKQmi74q0CDdOXTZ7DqwP-6p0_fupNq07VPI0lfMCPtBGR441LaxpylgKcV5zubidX3RcKALIIBGzQVTVR2v0a-jzOVqCe4YcAS9HdzAEUkWFWziArH0hjozvMw5YCyB9_HeYVpD3u6Ht5tjXa0B531jruJM_hZ7WMvDobgbNdKB0b89eScSBjciARg

The attitude of the Scottish Government is appalling. Their GIRFEC Get it right for every child is a joke. There reply is shocking. Fobbed off to Enquire and Govan Law Centre. There are so many children with Additional Needs being totally failed in mainstream education. Children and families  are passed breaking point  and the effect on their education, mental health is shocking.  

Chris_Alumni

Hi @Yiman60, many thanks for sharing this information, I'm sure it will prove useful to some community members. 

Yiman60

Thank you.

At the end of the day my 20 year old who was expected to go to a first class University is a virtual recluse and will spend his life on benefits. The youngest was humiliated, degraded at school, in fact both were. They refused to put support in till we obtained a diagnosis. Found out too late I did not need a diagnosis under the Additional Support for Learning Act and they had a duty to refer, they never did with the youngest. Because they refused to put the support in the anxiety went off the scale causing severe sleep deprravation .He was staying up 24/36 hours. 
In my opinion that's Mental Cruelty , Child Abuse. The blatant lies that have been told since to cover up what happened with boys boys has been shocking. It Starts from Politicians and the SNP downover.
So many children are being excluded because of the lack of the right facilities, correct teacher training , we need to return to the old system of specialist residential schools, special units like the Columba  Unit in Renfrewshire and every teacher trained in Learning Support. Inclusion is a failure.

http://www.dailyrecord.co.uk/news/scottish-news/scots-child-handcuffed-school-three-7278998

Just one example . PDA must be recognised . To understand PDA you must first of all recognise Autism Spectrum. That's not happening in so many places.

https://www.pressandjournal.co.uk/fp/news/highlands/973727/north-mother-appalled-by-gtcs-decision-to-clear-teacher-of-mistreating-son/

Another example of abuse of a child in Scotland . Covered up by the teaching union. I was fobbed off by the teaching union , said it was the Councils responsibility. It's an absolute disgrace. Shocking behaviour.

Yiman60

http://www.autism.org.uk/about/what-is/pda.aspx

Forgot to mention the NAS recognise this condition.

Yiman60

http://www.parliament.scot/GettingInvolved/Petitions/PE01625

Petition started . Please sign . Get PDA formally recognised