Being Misunderstood: PDA

A publication has been produced this week by the PDA Society entitled Being Misunderstood: Experiences of the Pathological Demand Avoidance Profile of ASD (click here to download a full copy).

One of the figures in the paper really confirmed the consensual feeling we hear so often and that is our needs are not being met:

71% of 79 adults and 70% of 1194 parents reported that they had found a lack of acceptance or understanding of PDA a barrier to getting relevant support.

These figures are astounding and truly reflective of the call for action.

It really is impacting so many vulnerable families and a clear sign of failure from the Department of Health’s declaration to be “needs based” and “outcome focussed.”

I can vouch for these findings, after all, I have first hand experience of it over the past three years.

As many will have already seen this week or been involved in (some way or another) that a protest was held to make a call for government action.

When you think about it – if you live in one area you may well have access to a professional who will understand your condition and give you the help you may need.

Yet, another individual could live as close as a ten minutes drive away from the first person, in a neighbouring county, and be told sorry we don’t diagnose that here, how about let’s give you another label for something else.

Well I’m afraid this is nothing other than disability discrimination.

Failure to be assessed for those ‘needs based outcomes’ results in individuals with an autism spectrum who, as a direct result, are being misunderstood.

It has been proven to impact life chances and opportunities as support is not being provided.

By ignoring this issue, individuals will continue to be discriminated against.

As parents, carers and individuals with PDA, we need to make our voices heard so we did it – together.

The protest in London was such a positive experience and at times incredibly moving:

In the iconic pictures above you can see the moment when we unravelled forty meters of individual ribbons that were all interconnected.

Each ribbon signified every individual who wanted to be there on the day but in one way or another couldn’t make it.

It was outside the Department of Health’s building in Victoria Street where we finally hand delivered five hundred letters to Jeremy Hunt who NOW has to respond to our action.

Like so many others I would not have been able to make it on the day due to childcare issues as my daughter currently only manages one hour per day at school.

So I made the bold decision to take her with me.

It paid off and it was such a valuable, uplifting experience.

My PanDA 🐼 got so much out of the day despite how anxious she really felt inside.

She made a beautiful friendship on the day with another young person with PDA.

They walked hand in hand, talking and turn-taking, handing out leaflets together to passers by.

As her warrior mummy said to me “it’s beautiful to watch.”

This was a sentiment I echoed back.

Our children are often desperate for social interaction with others – we just need to act as facilitators to enable those moments to happen.

On the day we were fortunate to have some influential speakers who wrote some powerful speeches about PDA.

As a group we were very grateful to have the presence of Autism Ambassador Anna Kennedy OBE support this cause (see here for a published article).

The part of the day that I was fearing was the journey home.

It was at rush hour time – I knew any commuter would be perceived as a threat to my daughter and the last thing I wanted her to do was go into meltdown.

So as we finally boarded our last train home, with a cumbersome sign and no place to rest it, the odds of it going smoothly were slim.

She pushed past the commuters and secured us a seat – well actually a collection of five seats to be precise.

Her belongings were sprawled on the chairs along with her body parts.

Her language and actions communicate her territorial nature.

So as people climbed on and asked to sit down I could feel my heart rate fasten.

Please not now.

Please don’t stick your tongue out or shout or scream or spit or hit out.

I stroked her and offered her my goody bag of tricks to distract the onset anxiety overspill.

All of the seats go but one. The one next to her she is securing.

Then a lady appears and politely asks to sit down.

I can see my child’s growl on her face, I’m hoping at this point the lady doesn’t see it. She may judge us and I’m not prepared to defend right now.

I try and make room with the sign now pushing into both commuters.

The lady begins to engage with my daughter and treats her with love, compassion and kindness.

She sees past my child’s difficulty to communicate and becomes absorbed in my daughter’s interests.

She even offered to help carry our sign down the stairs or give us a lift for the last part of our journey.

A stranger who knew nothing about our struggles but by just being kind she massively impacted our day.

She has started following this blog since our encounter and contacted me. The very next day she saw this article in our local paper:

So many people asked us about the sign on the day and coupled with the media attention that was raised by newspapers, TV and radio – all of this will have made some vital steps to get PDA better recognised.

Our train journey home was a fine example of the importance to be better understood –  it really does make a difference to families when we are able to feel a part of the community.

Thank you for reading and for all the shares this week – we CAN all do our best to make a difference!

 

🌟🌟 For anyone wanting to learn more about this issue, you can click on the following links: 🌟🌟

Here for ITV Northern coverage – with added thanks to our PDA Society Trustee Sally Russell OBE for her interview to accompany this bulletin (here).

Here for BBC Radio 5 Live PDA Action Day topics presented by Nicky Campbell and Rachel Burden.

Here for Action for PDA Campaign Page on Facebook.

For a comprehensive list of PDA resources, Notes On PDA has kindly put together this blogpost.

Finally, a post on the day from Steph’s Two Girls, who sadly couldn’t make it but does so much campaigning. Here is an update from her.

One Comment

  1. StephsTwoGirls (@stephstwogirls)

    Awww so glad you encountered a person with the right kind of attitude at the end of the day – and really, that’s all it takes, isn’t it?! Glad that your PANDA managed the day AND made a friend! Thanks so much for all you’ve done and for including me here x

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