Petition update

PDA Updates ~ The Pressure Grows

Autistic Parent
United Kingdom

Oct 27, 2018 — 

Dear Supporters,

since last posting an update a few things have been going on:

PDA Action group have been pushing the Government and gaining support for an Early Day Motion publicised here on the PDA Society's website: https://www.pdasociety.org.uk/blog/2018/10/early-day-motion-about-pda

There have been cases of PDA in the news, including the tragic story of Stephanie Bincliffe: https://inews.co.uk/opinion/stephanie-bincliffe-died-because-she-was-imprisoned-for-being-disabled/

The anger and outrage people should feel about cases like Stephanie's is enormous. If a parent treated their child that way they wouldn't be allowed to keep them. So why are the authorities and 'care' homes? Children have been taken from parents for being allowed to become obese. Stephanie had ASD-PDA. This home made Stephanie obese through isolating her and stuffing her (through a hatch) with junk food and drugs, which literally killed her. She died at 26 stone of sleep apnoea and heart failure, her weight had doubled in their 'care'. They didn't understand her PDA, so they subdued her with drugs and placated her with junk food. They wouldn't even allow her access to washing facilities and made her use wet wipes. Is this all people with ASD-PDA deserve?

Then there is the case of Bethany, who also has PDA: https://www.bbc.co.uk/news/uk-england-birmingham-45849075 who has also been locked away in isolation in a secure unit for two years in a 12x12ft room. The fuller story by her dad is here: https://itmustbemum.wordpress.com/2018/10/14/bethanys-dad-gives-the-rest-of-the-story/ and you will note that when Beth was diagnosed with PDA, the local psychologist's attitude was:

"she dismissed the diagnosis stating it’s not recognised so she cannot possibly be diagnosed as having it." and nobody in a position of authority would accept the diagnosis.  Beth had a biro lodged in her arm for a significant period of time following self-harm, which they did nothing about and she has developed type 2 diabetes. Her family are forced to kneel down and speak to her through a feeding hatch when they visit.  Only since her dad spoke out publicly has care for Bethany altered.

How many autistic people have to be abused this way before something is done? Those with PDA have the most extreme form of all autistic behaviours and anxiety, but without the right recognition and understanding of PDA they will continue to be locked away. And there are countless families dealing with this extreme behaviour at home, without support. Some families have more than one child with PDA too.

Finally, please see this Parliamentary discussion about autism, which arose from the heroic parental campaigning efforts following the tragic death of 18yo Oliver McGowan who had Asperger's, who was given antipsychotics that he was allergic to, again for the reason of subduing his anxiety: https://www.theyworkforyou.com/whall/?id=2018-10-22a.1.0&s=NHS+Negligence#g25.0  In this discussion, Mike Hill asks the question as to "the need for a national database for autism and associated conditions designed for the purposes of splitting the autism spectrum into subsets?"

If this happens, then PDA needs to be one of those distinct subsets!

Please keep signing and sharing to get formal recognition of PDA into the diagnostic manual.


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