Back in May, we invited the PDA community to contribute to the House of Lords Special Inquiry into the Autism Act 2009. We want to say thank you to the 266 of you who responded. We used your feedback to let the inquiry know how important it is that that an autism strategy meets the needs of all autistic people, including PDAers.
Our submission based on your feedback focused on four things:
1. Recognition
PDAers exist and deserve to have their needs met – but that at the moment they often don’t, with very real consequences for them and their families. To meet needs, greater understanding and awareness of PDA is crucial. Universal services and support should be accessible to everyone. But without the ability to recognise and adapt to all autistic people’s needs, they exclude too many people – including PDAers.
2. Diagnosis
Diagnosis and the ability to be able to clearly describe strengths and needs is crucial. But you were also clear that support should not depend on diagnosis. You said it’s important that:
- Everyone working in universal provision is trained and empowered to notice and respond to needs from the start – without waiting for diagnostic confirmation.
- Diagnosis has a purpose, and that purpose is to deepen our understanding of a person – not to serve as a barrier that must be passed before help can begin.
3. Better training, everywhere
Awareness isn’t enough. We need deep, practical understanding embedded in professional training, that enables people to recognise and meet the needs of people with less typical presentations.
4. Research that reflects real lives
The strategy must invest in research that listens to and works with everyone in the autism community – including PDAers.
And importantly, accountability
You told us that there must be a role or organisation who is resourced, empowered, and required to make sure the strategy is working. That a strategy that outlines clear, defined measures of both activities undertaken and the impact of this activity is crucial. In our response we shared some of the measures you said were important.
This matters because we want change for PDAers. But what we’re asking for in our response – more flexible services, more responsive support, and more human systems- would benefit everyone. A society that meets PDA needs by default is a society that’s more compassionate, more inclusive, and frankly, more functional.
The Autism Act had big ambitions. We still believe in them. We hope the next autism strategy reflects your feedback. You can read our full response here.