Benefits of understanding the PDA profile

All research points to early understanding of strengths and needs, together with appropriate support, being key to positive long term outcomes.

Some PDA adults thrive in employment, particularly where they have sufficient control and a deep interest in the activity. Others may move regularly from one job to another, by choice or necessity, whilst others find they can’t function in a work environment. Some need significant support from loved ones and/or the care system; others don’t require support.

Children and young people may struggle with the school environment, and school ‘refusal’ is common with PDA. Sometimes schools are able to make sufficient accommodations, specialist placements can be effective and some families find home education works well for their child. In other cases young people are able to ‘mask’ during the school day but may need the time and space to release tension at home.

Many parents find that they need to adapt their parenting style considerably to meet their child’s needs.

Whilst our survey in 2018 highlighted that a PDA profile of autism often results in individuals and families being misunderstood, we look forward to that changing as understanding of PDA and the approaches that help increase.

Here are some of the benefits of understanding the PDA profile that have been shared with us …

Researching PDA was a massive ‘lightbulb’ moment! This feeling was cemented when we started trying the suggested approaches … it was nothing short of life-changing: we went from 6-7 incidents a day to 6-7 a week – Zara’s Mum

Before the PDA profile was specified in John’s diagnosis we had no support, 5 school exclusions and a very limited timetable. Afterwards an EHCP assessment was agreed to and he now has the right provision and support – nothing changed just words. I truly believe that without a differentiated diagnosis John would have been lost – to himself, to me and to the world at large – John’s Dad

We thought Zoe may be autistic but her needs were very different to other autistic pupils we had supported in school before, and none of our usual approaches helped. Searching for answers led us to PDA. Seeing Zoe through this lens enabled us to truly understand her and successfully adapt our practices by building trust and embracing a flexible and collaborative approach – Zoe’s teacher

Once I understood about PDA I was better able to articulate my experience of the world to my psychiatrist and take a proactive approach to reducing the daily demands I face. Previously I’d forced myself into mental, financial and physical ruin too many times, just because the world tells me that I “should be able to do it because everybody else can” – Tony

We were increasingly perplexed by the complex presentation of one of our service users and our team’s inability to meet her needs despite our very best efforts. Whilst Sarah doesn’t have a formal diagnosis, following PDA training we were able to devise some unique approaches that have been highly effective. Using these approaches is the difference between Sarah being able to live in her own home and being held in a secure hospital – Sarah’s social care manager

Working with the PDA profile of autism is a completely different way of being, for the individuals and for me, but it works. My biggest challenge and frustration has been the system thinking we should be firm, not negotiate, not give choices, not recognise PDA. This has at times been heart-breaking for the individual and those who support them – Ben’s psychologist