Action you can take about PDA

Many parents contact the PDA Society to ask how they can ask their local authority to recognise the PDA profile of ASD. Here we have outlined some ways in which you can help.

Don't think you need to do everything, or all at once. If we all work together to develop understanding about the PDA profile, the support we receive will improve, and every letter and discussion counts.

The aim

To raise awareness of the PDA profile of ASD we need to see some clear leadership on this issue from those responsible for local services. We are asking those in charge to publish a position statement on the PDA profile of ASD. 

Experiences are currently very variable, and this is because of
  • a lack of direction, and
  • a lack of detailed understanding amongst front-line staff, both of the nature of the profile and of how to provide helpful support.
By working constructively together, professionals, PDA adults, young people and parents will see improvements to services. 

It is hoped that the information here will help you to start that conversation and encourage individuals to take action. These are the steps you can take:
  • Find out who has the power to make a difference
  • Share information in a practical and non-confrontational way
  • Let others know what you are doing
  • Keep in touch
  • Give them the solutions and give it time
  • Don't give up

1. Finding the right people

Every area is set up differently and this information mostly applies to England, but the principles apply everywhere.

Find out who is responsible for commissioning local services and the strategic groups which oversee them. Contact the Chairs or key individuals. Find out names by looking up published reports online and don't be afraid to ring up and ask who you should write to. Look out for them on social media too.

Local Authorities and the NHS should have :
  • Autism Strategy Group with a lead professional responsible for the local autism pathway for diagnosis of children and young people.
  • Autism Partnership Board (usually just adult services)
  • Health and Well-being Board (not Autism specific but should have some oversight)
  • Clinical Commissioning Group

2. Information that you can share

You might include:
Make use of other evidence, such as examples of your own experiences.

3. Letting others know

  • Find out about local autism charities, support groups and carers groups in your area and contact them to let them know what you are doing. Ask if they have any experiences that it would be appropriate to forward by way of examples, and whether they would be able to raise the issue at any meetings they are attending.
  • Involve your MP. Ask if they will also write on your behalf
  • If you have specific difficulties with a response you have had from health service providers, talk to Health Watch and ask for their support.
  • Involve your local newspaper

4. Keeping in touch

  • If you haven't heard within a few weeks, ask for an update.
  • As you come across more information, send it through to keep ensuring they are aware of issues.
  • Consider conducting a survey of local families to provide stronger evidence of needs.

5. Give them the solutions

  • Ask whether you are able to meet to discuss the issues. If you feel you need support, contact the PDA Society for advice. (It may be that a Trustee could be available to give a presentation if it helps).
  • Suggest that they arrange a workshop for senior staff. 
  • Point to case studies to demonstrate what can be acheived. 

6. Don't give up

It can take time for issues to be raised and for thinking to evolve. Be patient but persist!