Autism and Aspergers
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Pathological Demand Avoidance PDA A rare form of Autism.

Yiman60Yiman60 Member Posts: 95 Connected
edited October 2016 in Autism and Aspergers
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.  

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