Getting EDA/ PDA recoginised is currently a postcode lottery.

It is crucial that it is identified because EDA/PDA needs have a huge impact on the education, training, employment, and support needs of the Individual.

The national PDA Action campaign team is headed by four parents Maria Smith from Bognor Regis (who originally set up a petition after having the threat of her child being removed through social services, due to lack of recognition of PDA), Tracey Tanner from Dorset who also has a son with undiagnosed PDA, Alison Fisher from Walsall, West Midlands and Cassandra Davies from Somerset, also parents of children with ASD with a PDA Profile. All parents undertake this on a voluntary basis and have rallied support in two large Facebook Campaign Support Groups with active members that undertake the actions of the campaign.

They have brought together a strong movement around the recognition of PDA by healthcare professionals and instigated a petition which secured sufficient signatures (11,200) to activate a Government response from the DofHSC.

The campaign team and PDA Society felt unhappy with the Government’s initial response, finding it “woolly and inaccurate”. The team lobbied MPs and asked for support in challenging local Clinical Commissioning Groups to issue a position statement about how PDA can be assessed within current ASD guidelines. Such position statements are already in place in Surrey (Jeremy Hunt’s own constituency) and Bradford. The letters also requested that the DofHSC provide further clarification to enable clinicians to fully assess and diagnose PDA under the current diagnostic criteria and NICE Guidance CL128.

Over 180 MPS were contacted by members of the campaign and over 50 have received responses. The responses were largely unhelpful – quoting outdated data which had already been challenged and ignoring the fact that diagnoses of PDA or Autism with a PDA profile is already being given across the country - and this prompted the peaceful protest/march which took place yesterday to mark PDA Action Day.

The D of HSC responded stating that they support our call for action.

A protest held in London in May 2018, saw speakers included Sally Russell OBE, trustee of the PDA Society, who released the shocking results of a large scale survey of 1500 PDA adults and parents/carers/partners and Anna Kennedy OBE, who supported the call for action in order to prevent the continuation of parent blaming and to avoid unnecessary mental health conditions developing in the PDA community. The protest included a march to the Department of Health where over 500 letters requesting that Jeremy Hunt ask to take action were handed over. The campaign group also requested a meeting with representatives from D of HSC to work jointly on position statements that can be used by every local health authority area around the autism profile of PDA.

The PDA Action Team require support to move the position of recognition of PDA amongst health care professionals further by undertaking a variety of actions at both National and Local Level