One of the most important aspects for a PDAer is safety and trust
This will look different for each person who identifies as a PDAer, but for me it means being heard
Feeling like I matter
When I am ignored, dismissed, invalidated, overlooked
It feels like a betrayal
I’ll give you an example
When I came onto the autism scene as a speaker, I was more than willing to collaborate with others.
In fact, I was excited about it and whether they were autistic or not really didn’t matter so much to me, as long as they were respectful of the voices and rights of autistic people.
As I write this, I realise the damage that has been caused by these experiences I’m about to write about.
I can feel a well of emotion rising inside that I haven’t been in touch with.
The sadness has felt like anger and defeat and injustice - something that is common for us PDAers when we feel we have been wronged.
I spoke at an event on autism acceptance.
It was received well by parents and I enjoyed engaging with parents and teachers after I presented.
I was then, however approached by an autistic person who told me they didn’t agree with acceptance and told me I was too invested in it; that I should learn to better engage in a neurotypical dominant society.
I watched this person respond to tearful Mothers in conversation with me by interrupting with a nudge of the elbow and a stern and short “You need to be strong for your child”.
In that moment, I internalised whatever it was that I was feeling in response.
I still don’t really know what it was. But it wasn’t good.
We discussed our differences and moved on.
I wasn’t okay.
I then discovered a resource offered by the conference on the four ‘causes of autism’.
No. Just no.
It wasn’t good.
It was written by someone who does not identify as autistic and who had confused correlation with causation.
I spoke up in a gentle way.
And was dismissed.
Pregnant mothers breathing toxic air does not cause autism, just so we’re clear.
I moved forward, but noticed a resistance to continue speaking for others.
I was aware of the growing resistance and feeling of disillusionment and lack of safety, but not so much engaged with it.
At the same time, I was invited to be a part of an online event on autism.
It involved topics I wasn’t fond of, and I made it known to the organiser that having a speaker on ABA (Applied Behaviour Analysis) would not be received well by the autistic community.
I watched this person who does not identify as autistic then delete all comments by my autistic siblings and community when they expressed distress at the prospect of involving an ABA therapist as a speaker, having consistently shared the damage this therapy has caused.
Against my intuition, against my better judgement.
Autistic people will often believe we are ‘overthinking’ or overreacting to things that hurt us or feel wrong or uncomfortable, because our experience has been that since early childhood, we’ve been told this.
We internalise self loathing, self rejection, ableism.
We feel embarrassed, ashamed, wrong, over the top when we speak up.
It is seriously hard work, exhausting, terrifying to speak up.
Many of us autistic speakers experience not being paid after the promise of being paid,
We experience being othered and criticised and boy oh boy the gaslighting.
And then after some time
We get angry.
And we become resistant.
I started saying No.
No, I’m unable to speak at your conference.
Sorry, I’m unavailable on that date.
Apologies, I’m too busy to collaborate.
My words become shorter and blunt.
My voice, monotone.
I can’t listen to podcasts, read other peoples’ content, engage in discussion with others or watch videos on the topic of autism unless they align with what feels completely safe and non threatening to me.
And of course, unless they are autistic.
But even that doesn’t guarantee a safe voice.
Do I think I am the ultimate voice on autism?
My point is, that now, PDA is here.
It shows up as a trauma after being violated time and time again.
And what that violation is, will be different for all of us.
For me, it’s the not being heard, being dismissed, having my community misrepresented..
It hurts. It’s painful. It is infuriating.
For many of us, we dwindle away until we no longer speak anymore.
But for me, a PDAer, it means I speak louder and longer and harder because that’s my version of explosiveness.
It’s my version of avoidance.
I will no longer stay quiet. I will no longer do anything I don’t feel is safe. I won’t listen to others. I won’t stay silent. I won’t tolerate ableism.
NO. NO. NO.
I recognise my part, my responsibility in saying no, setting boundaries.
But setting those boundaries isn’t easy when you’ve been violated repeatedly.
Autistic people, autistic children, PDA children need to be BUILT UP.
We need to know we can say NO. To ANYONE who doesn’t feel safe.
We need to know we’ll be heard.
Engaging us in therapies we don’t want to engage in is not safe.
It’s a violation.
Forcing us into environments that are frightening or overwhelming is not safe.
It’s a violation.
Not listening is a violation.
When we feel heard, safe, validated,
We engage. We participate. We negotiate. We collaborate.
Violations are traumas that create resistance
And that resistance is the demand avoidance.
Listening to a podcast, reading content, watching a video is now a demand, a threat to me.
It feels like being controlled. Giving away pieces of myself. Saying Yes to being unsafe.
It isn’t safe.
People reaching out and asking me to collaborate
Is no longer safe.
I’m working on this passing.
But there has been a lot of damage done.
As a PDAer, I internalise a lot of things that I witness as well,
Such as the way others treat eachother,
The way problems are dealt with in society
And it incites a level of demand avoidance.
I don’t always know,
I’m not always conscious of the demand avoidance
And I’ll become frustrated with myself
“Why can’t I just do this?!”
And then I link it back.
And there it is.
Some form of violation.
Reading all about the impairments and disorder
How it needs to be changed and fixed
Is a violation.
And then my PDA is triggered and that assignment due tomorrow?
I haven’t managed it because my brain has been activated into demand avoidance.
It is complex and frustrating and so largely misunderstood.
Since my first post, I received so many messages telling me what I needed to do (not in a good way)
Telling me I am frightened of hard work, of being compliant, that I’m attention seeking, that we are a social society and I need to get on board.
And the best of all, that I need to get over my self serving bullshit.
And that’s okay.
Underneath it all,
There is openness, acceptance, love, a drive for social justice and change, advocacy, warmth, authenticity, honesty, rawness and truth in every single PDAer I know.
I long for us to be better understood, accepted and less resisted.
And oh, the irony in just that.