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Is it worth writing a letter to all national newspapers highlighting plight + seeking petition help
  • Ja
    Posts: 8
    Just wondering if a letter might help. Could there be a download for smart phones ?

    One of my colleagues also suggested me asking GP to contact the local Community Health Council re lack of PDA recognition. I have been advised not to do by employer as I work for the NHS and want to criticise it ...but know a local councillor who is interested in autism who could do the same thing. Also has the World Health Organisation been contacted directly ?
    Thanks
    J
  • You could try. Try this independent journalist to start with:

    Suzanne Kelly sgvk27@aol.com

    The Sustainability and Transformation Partnership should also address the postcode lottery.

    What is happening is that health Trusts are using as an excuse that PDA doesn't exist standalone in the diagnostic manuals. But it is an ASD so it doesn't need to, so for the DSM 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: 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 etc.".

    I have submitted to the WHO's ICD-11 beta draft that PDA is listed as an ASD subtype. They haven't made a decision yet for some reason.
  • What you need to understand is that it's not accidental, we are fighting a system that is avoiding diagnosing because it opens up access to resources for families. ASDs are the most expensive conditions to treat. http://www.lse.ac.uk/newsAndMedia/news/archives/2014/06/Autism.aspx

    The Government has known for 26 years or more that autism parents are being falsely accused of neglect or abuse and they have done nothing, because it suits them not to allow families access to expensive resources. By blaming parents, they can shut down access to diagnoses. Hence false accusations of FII and emotional harm have absolutely skyrocketed among SEN families.

    PDA is better assessed using the DISCO clinical tool, CAMHS seem to pray to the ADOS even though it's only 77% clinically reliable in typical ASDs, therefore will be less so in PDA. Parents are being fobbed off with parenting courses and denied access to assessments. They are having their parenting blamed. Children are being taken into care.
  • "Raise Awareness and Understanding of PDA Among Health Care Professionals"

    https://petition.parliament.uk/petitions/202680
  • Holly59
    Posts: 2,586

    said:

    Just wondering if a letter might help. Could there be a download for smart phones ?

    One of my colleagues also suggested me asking GP to contact the local Community Health Council re lack of PDA recognition. I have been advised not to do by employer as I work for the NHS and want to criticise it ...but know a local councillor who is interested in autism who could do the same thing. Also has the World Health Organisation been contacted directly ?
    Thanks
    J





    http://lawstuff.org.uk/my-rights/what-are-childrens-rights/

    Children's Human Rights , they don't exist either . I mentioned this in Parliament . Not worth the paper they are written on .
  • Don't know if anybody saw the half hour slot about child to parent violence from autistic children on Victoria Derbyshire this morning (approximately 9.10-9.40am)? The NAS says families are being failed but LAs complain they don't have enough money to provide the support. This is despite the massive costs for putting a violent autistic child into care being way higher. The Government don't give a crap.

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