PDA Society 2018 Survey: Recommendations


Local Authorities, Autism Boards and Clinical Commissioning Groups ‚Äč

Local Authorities, Autism Boards and Clinical Commissioning Groups across the country must urgently communicate their position on the PDA profile of ASD to service providers and their users, to clear up the confusion over assessments and service availability that currently exists.
  • This should recognise that: assessments should follow NICE Guidelines through fully considering presenting traits. They should be conducted collaboratively with individuals and parents;
  • Diagnosticians have the professional competence to use the terminology which they think best fits and should be sufficient to highlight needs to post- diagnostic services.
  • Leaders must confirm that those who have a PDA or PDA profile diagnosisshould not be barred from services, and referrals for PDA assessments should not be rejected.
 

Government and autism leaders

Government and autism leaders must consider why so many people are being failed and press Local Authorities, Autism Boards and Commissioners to create the conditions so that needs are assessed fully and in a collaborative manner, so services can be truly outcomes-focused.


Education services and schools 

Education services and schools must increase their awareness of the needs of individuals with a PDA profile of ASD, and how to make reasonable accommodations.
  • Educational psychologists and SEN co- ordinators should have training available in the PDA profile of ASD and feel confident to support staff to work in appropriate ways with individuals.
  • Ways of engaging that are very different from the norm may be needed, such as allowing part-time attendance and student-led learning. Special schools should consider the development of new educational environments where existing ones fail.
  • Staff should be encouraged to work together with parents of those with a PDA profile to truly understand their needs.
  • Schools, including special schools, should review cases of young people they are currently excluding or who are unable to attend to see whether a PDA profile of ASD may be an explanation.
  • Local authorities and attendance officers should identify those with a PDA profile and offer suitable tailored support.
  • PDA-friendly education schemes, with a focus on how best to support learning, should be developed for those who cannot thrive in schools.


Autism education and training providers

Autism education and training providers should ensure that differing responses of individuals across the autism spectrum, including those with a PDA profile, should be included in autism courses and literature.
  • Professional training should raise awareness of the PDA profile and ensure further information can be found when needed.
  • Providers of mental health and autism services need to ensure that their staff are equipped to identify and work with those with a PDA profile, whatever terminology they choose to use.
  • Providers of diagnostic services will understand how diagnosis works as a signpost. Those that incorporate terminology around avoidance are better able to signal the type of support needed. The use of ASD alone points to accommodations which don’t work.
 

Professionals

Professionals should ask themselves what more they can do to develop their own understanding and that of others, and challenge themselves to be open to the explanations of individuals and parents.
  • Those who have experiences of working with individuals who may have a PDA profile should be encouraged to share their experiences.
 

Parents 

Parents should feel able to recognise and assert their expertise, both individually and collectively, and continue to provide information to those they meet.
 

Autism advocates and adults with PDA 

Autism advocates and adults with PDA (some of whom prefer the term ‘PDAers’) should be encouraged and enabled to use their voices.
 

Researchers

Researchers are aware that the specific issues around the PDA profile remain relatively unexplored and the unique nature of these autistic responses neglected. Identification of research priorities for this area will help to focus attention and much-needed funding on a group who are often being unwittingly discriminated against.
  • Research to date has largely focused on the ‘can we call this a syndrome?’ question, with little on helpful interventions. A collaborative effort amongst all those with an interest in this area should investigate the profile from the perspective of the social model as much as the medical model.
  • When designing more general autism intervention studies, researchers should consider how to include atypical profiles.