Pathological Demand Avoidance group bids for charity status

debroarke

Deborah Rourke with Tania

The most popular post on Special Needs Jungle continues to be about the condition Pathological Demand Avoidance

Last week I met Deborah Rourke, who wrote the post - it turns out she lives close to me so I hope we will see a lot more of each other.

There is to be a PDA Awareness Day on May 15th, and Deborah writes here about the group's plans.

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Pathological Demand Avoidance syndrome is increasingly being recognised as part of the autistic spectrum. One group instrumental in bringing about this change is the PDA Contact Group,  a supportive website filled with contacts and information.

It has a forum where parents, carers and siblings can ask questions or simply vent their concerns. Our membership numbers over 2000 now and the forum is busier than ever with the number of enquiries for support and information is increasing.

LOGO1It is fast becoming clear that the group must consider the future and start thinking ahead. Awareness and recognition of PDA is greater than ever before and it is perhaps time for the group to develop its role in response to this change in status.
PDA may not have made it into everyone’s vocabulary, but it is on the agenda for being taken seriously by a wider range of professionals.

Our immediate aims are for the PDA contact group to become a registered charity and we are currently campaigning for 15th May every year to become PDA Awareness Day.

The National Autistic Society has put on several informative PDA conferences across the country and we feel workshops and seminars as well as participating at wonderful events such as The Autism Show,at Excel London 14/15 June is the way forward.

With help from government grants and kind donations, our future aims are to ensure accessible information is available in every GP surgery, play-centres, nurseries, schools, to further help raise PDA awareness and provide vital information across the board.

We are very excited and overwhelmed by all the generous offers of help, support, donations; it will provide us with the much needed resources to begin to provide some of the above services.

Please do not hesitate to explore our website: www.pdacontact.org.uk (a new one is on its way, to better manage the increase in demand).

You can now also find us on twitter: http://twitter.com/pdacontactgroup

Other recommended PDA information sites: http://advocate4pda.wordpress.com

http://www.cafamily.org.uk/medical-information/conditions/p/pathological-demand-avoidance-syndrome/
Supportive Facebook group: http://www.facebook.com/groups/7165353156/
National Autistic Society: http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

Tania Tirraoro
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Tania Tirraoro

Tania Tirraoro is a journalist, author and the founder & CEO of Special Needs Jungle. Tania has two teenage sons with Asperger's & started SNJ to help other parents through the confusing world of SEN statementing. She also runs a PR & social media company, SocialOro Media.
Tania Tirraoro
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About Tania Tirraoro

Tania Tirraoro is a journalist, author and the founder & CEO of Special Needs Jungle. Tania has two teenage sons with Asperger's & started SNJ to help other parents through the confusing world of SEN statementing. She also runs a PR & social media company, SocialOro Media.
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  • Hilary Morrison

    thanks for posting this – my son has a diagnosis of aspergers but reading this, am seriously questioning that it should be PDA. I am covered in bruises from just asking him to wash, clean teeth and the “normal” hygiene things. But the most enlightening area was that they let everything go when they get home and act fine out/at school etc. I am so tired of professionals telling me, I am lying or exaggerating what he does.

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    • http://multicolouredsmartypants.wordpress.com sandyfaithking

      What would happen if he went to school unwashed, I wonder? I’ve been through similar with my ASD son. Risperidone was a last resort, I put it off for maybe a year, but it made such a difference (and he’s not on it now because he improved over time). I’ve also just read a very similar account in another blog: http://autisticson.wordpress.com/2013/04/07/out-of-control/

      I just wanted you to know you’re not alone, for what it’s worth. It’s awful when people don’t believe you and you’re the one on the receiving end of being physically hurt and screamed at. It’s like abuse (by the professionals). I wonder if the National Autistic Society would be able to offer any advice?

  • Pingback: Pathological Demand Avoidance group bids for charity status | advocate4pda()

  • http://advocate4pda.wordpress.com advocate4pda

    Once again Tania has provided a supportive platform known as Special Needs Jungle to assist us in raising much needed PDA awareness, it was an absolute pleasure meeting her, and look forward to future projects together. We really appreciate this unique service which reaches out and amplifies our voices into homes across the country. Special Needs Jungle a real gem. Our huge thanks.

  • http://shiggs55.wordpress.com janesherwin

    Reblogged this on Pathological Demand Avoidance Syndrome and commented:
    Another great article featuring Deborah Rourke aka PDA Advocate by Special Needs Jungle about Pathological Demand Avodance Group Bids For Charity Status.