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Petitioning Minister of State for Community and Social Care, Department of Health Alistair Burt MP

NHS & Social Services Understand parents of Autism/PDA Pathological Demand Avoidance

My name is Bee, I've started this petition as there is a desperate need to raise awareness of ASD/PDA on a NATIONAL level within the Local Authorities/Social Services and the NHS teams who deal with Autism Spectrum Conditions specifically PDA (pathological demand avoidance). There are several petitions to gain recognition locally, but after my recent experiences the need for change is deep within the Authorities and has to be acknowledged at the highest level possible, Alistair Burt MP, Minister of State for Community and Social Care at the Department of Health. I am tired of the lack of knowledge, and angered by the continuing ignorance and parent-blaming from the Authorities that goes hand in hand with this condition, ASD/PDA. Within the NHS there is a rampant culture of focussing children's emotional/behavioural issues on parents, especially if the symptoms don't fit the criteria of a specific 'common' condition. They also often refuse to even entertain the PDA criteria when it's presented by parents. This needs to change in order for children (and adults) to get the correct diagnosis and appropriate support for a lifelong Neurodevelopmental Condition. It has been a difficult few months for my little family, we have been dragged through Section 47 Child Protection investigations with orders being placed on our two sons on the grounds of Emotional Harm...one of my sons is only a toddler and the other, only 4 years old...he has ASD/PDA...now, we have a diagnosis, we are quite rare in that sense, however the diagnosis only came about as we were backed in to a corner with no choice but to gain a private assessment with ASD/PDA experts in order to clear our names...i say our names, as a couple we were dragged through the mud, but as a mother i was specifically targeted as a perpetrator of Fabricating and Inflicing illness (previously known as Munchausens by Proxy). According to our solicitor at the time this was a very unusual case as they are hard to pin down, yet since going through this ordeal i have personally discovered that in our circle, the wider network of PDA parents, this is in fact not at all unusual. The NHS couldn't answer the questions we posed to them, the boy did not fully fit any symptoms list of a 'typical' Autistic child. It is said that there is no such thing as a typical autistic person, yet the NHS are sticking to a criteria of typical traits in order to identify it, seems ridiculous to me. Their very fixed criteria (that is screaming out to be readdressed) led them to accuse me of all kinds of atrocities. The Social Services, guided by their belief that the NHS is infallible went blindly along with the referral. Now in my family's case, there were many NHS mistakes that alone discredit the referal, various things such as not meeting the NICE Guidelines and malpractice from staff but none of this mattered one jot to social services. Once we had the positive diagnosis they still made life very difficult. My family is safe, we came off Child Protection at our first Review which is almost unheard of. My family is lucky, i know of families that are torn apart emotionally and geographically due to these kinds of attitudes and the repercussions of the staff involved in 'helping' families. I asked for support from the health service and early help hub, help that was not offered and once our situation seemed too complex to be real they assumed Fabrication. Living in a PDA household is actually very stressful and the daily battles are exacerbated by the constant fight against 'Professionals' in order to get them to hear us. On the whole the lack of understanding of PDA is causing parents huge emotional stress to say the least. The most glaring and worrying aspect of this, of course, is the effect on the children who are labelled as naughty, or worse, labelled as having nothing wrong at all, the children and parents being forced to attend parenting courses and try behavioural techniques that don't work or make things worse, the children that have Healthcare Services closed to them as they don't paint whatever picture it is the NHS expects to see. Occupational health to deal with sensory integration, Mental Health Teams to deal with the underlying anxiety that dominates these children, Paediatrician's who are unwilling to diagnose and Social Services unable to realise the actual help they could offer but instead take the worst possible steps to Child Protection...Whatever it is, it all has a short and long term detrimental impact on families. This has got to stop. ~~~~~~~~~~~~~~~~~~ Additional Note: There is an e-petition on the government website that was started by Alison Wiliams. This is not connected to that but please do follow the link and sign the petition also. I feel that Change.org is getting a lot of attention and feel this might be a positive way to further the need for awareness. https://petition.parliament.uk/petitions/127106 ~~~~~~~~~~~~~~~

This petition was delivered to:
  • Minister of State for Community and Social Care, Department of Health
    Alistair Burt MP


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