You are an activist

A friend and I have been talking a lot recently about the ‘invisibility’ of PDA.

Actually, as I write that, I think that’s the wrong term.

PDA is not invisible to friends and family of PDAers at all, it radiates, permeates and the anxiety of demand avoidance is often at the core of the PDA person’s life, well-being and has an impact upon their daily abilities. It’s definitely not invisible.

But it’s often hidden, masked, and sometimes manifests to the untrained eye as something else entirely.

Naughtiness.

Stubbornness.

Awkwardness.

Being ‘difficult’.

Self-sabotaging.

Deliberately putting up barriers.

Manipulation.

Being controlling.

Yuck. Writing those words made me feel a bit sick to be honest.

Yet those perceptions what our children and young people have to deal with every day from people who don’t understand their anxieties and motivations.

Something I read quite a bit in support groups is that whilst the mother of the young person might have researched and come to a certain level of understanding of PDA, it’s often the dads who get criticised for being on the back-foot.

For holding on to traditional parenting methods, for always falling back on reward and punishment tactics when behaviour is difficult or mystifying.

This is just an observation, I’d like to add.

There are many fathers who have committed themselves to changing their lens, letting go of their own parenting beliefs, and recognising and accepting that PDA is indeed a disability and that blame should not be apportioned for something out of the child’s control.

I’ve also read and heard lots about, and have personal experience of, family members who struggle to accept this complex profile of autism.

Who, whilst they want to be understanding and supportive, are so utterly confused by our kids that they find it almost impossible to make the leap of faith to get to the point where they accept the disability and change their perceptions of the behaviour they see.

And when I look at myself…I’m not a PDAer. I may indeed be neurodivergent and some of my friends have strong opinions on this but I am not PDA. And so I can not ever truly understand or fully represent the PDA experience. Being an ally only goes so far.

But what I’m getting at here, is that if parents and close family members struggle to come to terms with and accept the existence and full extent of PDA and how it impacts our kids, what kind of future will they have?

Will it be a case of our young people learning, developing and perfecting a daily mask so they have moments of flying under the radar?

Imagine for a moment how painful, harmful and trauma-building this could be.

Or will some of them live their best, unmasked, spicy, intense, true and beautiful lives regardless of judgement from others?

How can we as a community of parents, carers and allies work together to try and secure a future as safe, nurturing and accepting for our kids as possible?

I think we already are, but we can do more.

Have the difficult conversations with doubting family members.

Point them to research, towards adult PDAers and their lived experience.

Know when to walk away when we’ve done as much as we can.

I sometimes struggle to explain PDA to people as for many it’s quite an abstract concept. It’s invisible to them, it’s beyond their experience, and so it’s not surprising that some will doubt its very existence.

I recently heard the CEO of the PDA Society, Ed Archer, say that each conversation we have about PDA amongst friends, on social media – each piece of advice we pass on – is activism.

So it doesn’t matter if you’re not blogging, or reading all the books, or volunteering, or running training courses…you’re an activist by the simple fact that you believe in your child and you advocate for them.

But we need to be brave, and *keep* doing it, despite the disbelief, the exhaustion, the daily struggles, the sense of isolation.

We have a common goal, and we’re all working towards that goal, in our own small ways.