Since the previous petition – PE01625 – was closed in November 2017 after a detailed investigation by the Public Petitions Committee a series of significant developments have occurred. These include:
1. the tabling by Sir Mike Penning MP of an Early Day Motion 1669 in the House of Commons - “That this House commends the PDA Society and other PDA campaigners for their Call To Action campaign to raise awareness, recognition and understanding of the Pathological Demand Avoidance profile of autism; and supports their calls for Autism Boards, local authorities and clinical commissioning groups to issue a position statement to help health and education professionals provide the support so desperately needed by children and young people with PDA and their families.”
2. Important articles in the Lancet by Professor Johnathan Green and others and the commentary thereon by Elizabeth O’Nions and others entitled ‘Demand avoidance is not necessarily defiance’.
3. The PDA Society’s recent survey entitled ‘Being Misunderstood’ , which showed that seven out of ten children or young people with the PDA profile were unable to access school and one in ten had been permanently excluded from school
4. The legal challenge to the UK Government on the way in which exclusions from school had hitherto been conducted. Part of the judgement is quoted below:
“In my judgment the Secretary of State has failed to justify maintaining in force a provision which excludes from the ambit of the protection of the Equality Act children whose behaviour in school is a manifestation of the very condition which calls for special educational provision to be made for them. In that context, to my mind it is repugnant to define as ‘criminal or anti-social’ the effect of the behaviour of children whose condition (through no fault of their own) manifests itself in particular ways so as to justify treating them differently from children whose condition has other manifestations.”
We consider that this adds weight to the information in previous petition PE1625 and demonstrates that more can and needs to be done.
Early and accurate diagnosis must surely be a priority and along with appropriate interventions will identify those living with PDA and increase their emotional wellbeing and help them to achieve their full potential in life. It will also provide relief to their families, friends and carers and reduce costs to the NHS. We believe that the Scottish Government is in danger of falling well behind developments which can be accommodated while still adhering to international standards and guidelines.