Please stop hurting PDAers

Trigger warnings – swearing, gaslighting, ABA, discrimination, ablesm, privalige, medical model, and other triggers.

Please stop! Please stop saying PDA doesn’t exist, please stop looking for causes of our demand avoidance, please stop telling people you know the ‘real’ cause of their problems, please stop trying to talk for us/against us/over us. Just STOP!

We’ve been here before, we had this argument last year and yet you’re persisting in stating that your OPINION is right and that our LIVED EXPERIENCES are wrong. Why?

Here’s a link to the last blog post I wrote in response to this person’s opinion – Sorry to tell you, but PDA ISN’T stealing your Autistic voice!

(All links open into new tabs)

I personally emailed this guy, Richard Woods, to disuss the issue with him. He refused to move from his stance that PDA is a product being sold to PDA families as a commodity (I think for financial gain) and that we are all being brainwashed into believing it (yes you read that right, this guy actually believes this).

As if that wasn’t bad enough, he has now gone even further, publishing a new post on PDA ‘not existing’ and is intending on sharing his opinion with the world on PDA action day in London – Participatory autism research

Another speaker is Damien Milton, a guy who works for NAS and believes as Woods does that PDA does not exist and that we are being fed lies.

These people are setting out to undo years of advocacy work, years of fighting to get PDA recognised. They want to overshadow actual PDA and PDA family voices with their opinion of something they have never themselves experienced. 

PDAers and PDA families have spent so much time and energy fighting for help and support, fighting to be heard and listened to, fighting not to be brushed aside or labelled as ‘naughty’ ‘bad parents’ ‘lazy’ ‘abused or neglected’, and now these people want to undo all that because of opinion!

Nothing about us without us!

Here’s the link to the blog post Wood has created – My current opinions on PDA

 It is, quite frankly, ableist gaslighting ignorant and just plain WRONG!

I’m going to copy each paragraph and explain how each bit is wrong. How some bits are damaging and if spread, will hurt actual PDAers. And sadly there are those who are uneducated and inexperienced on PDA who will not only believe what they say but will spread their lies as well, making our lives even harder than they already are. 

I do not think PDA itself exits. I think Newson was originally seeing autistic persons, which explains why it is has become fashionable to assume PDA is part of the autism spectrum. I think PDAers are just autistic persons being rebranded as PDAers. I also think that there are many interacting reasons to explain why PDAers display PDA behaviour:

• Looping effects.
• Internalising of medical discourses.
• Complex interaction between autism and its comorbidities.
• Being conditioned into the PDA behaviour profile.

This is his opinion! Not fact. There has been no research to show his opinion, no study of actual PDA people, no talking to actual families and comparing to non-PDA families. He’s basically just read a few things, formed an opinion and now insists the world show know and believe what he says.

He thinks Newson was originally seeing autistic persons… Yes we know that, because PDA is a type of autism. Back then the criteria for Autism was very narrow, with the atypical presentation that PDAers often display then it’s no surprise Newson originally thought PDAers weren’t autistic. This has since been proved otherwise.

It’s become fashionable to see PDA as autism in his opinion, not because PDAers actually are Autistic (face palm).

Looping effects, this was what he outlined in his last post. More opinion.

Internalizing of medical discourses and being conditioned into the PDA behaviour profile. Oh the irony! He thinks PDAers are willingly believing anything we are told. Yes, because we don’t have an automatic avoidance reaction which makes us not want to believe what people say when we hear it (scoffs).

Hands up parents if you didn’t have that ‘lightbulb’ moment upon reading up about PDA (or seeing Born Naughty), hands up if you didn’t think PDA ‘fits to a T/like a glove/could’ve been written about Me or my child/like someone wrote about our lives/ ect). Hands up if you had to be talked into believing PDA fits, if you had loads of doubts and didn’t think it fit until you were conditioned into believing it.

No Hands? Oh! How unexpected (eye roll).

I think there are many things being seen in the demand behaviours, some of it is due to high anxiety due to uncertainty [as explained by Luke Beardon’s (2012) Global Instability Theory] but it is not because of an inherent need for control, that is projected by others onto autistic persons. I think there other things in the demand behaviours such as Damian Milton’s (2017) Rational Demand Avoidance and PDA supporters seeing what they wish to see.

Yes, high anxiety does impact PDAers, uncertainty is a factor, and it’s not because of an inherent need for control. But he’s wrong, we have high anxiety from uncertainty because, aside from the fact that we are Autistic, uncertainty makes you anxious if you live in an unpredictable world with demands everywhere that you know you won’t be able to always comply with.

But don’t take my word on it, I’m only a PDA parent to PDA kids.

Our need for control comes from having demands pushed on us and needing more autonomy than the average person. Society isn’t big on allowing kids to have autonomy over their own lives, but when everything is a demand and demands cause anxiety and fear and you experience a fear of uncertainty then of course you will try to control those around you. It’s a coping strategy, a response to our environment, a way of protecting ourselves.

But don’t take my word for it, I only experience this every day.

There is a view that PDA was created by Newson as a response to Wing’s triad of impairment; I have been told by a colleague of Christie’s (use to be a module lecturer of mine) there was a rivalry between the pair as Newson was not included in Wing’s autism group which at the time was the dominant UK research group. PDA was first mentioned (1980) after the Triad (1979).

A view! Based on anecdotal evidence. He’s been told by someone so it must be true (shock face).

That PDAers frequently do need a substantial amount of support and that PDAers place significant psychological pressures on those around them; therefore all parties involved with PDAers require extra support. That is no different from the rest of the autistic population.

Hear that parents, you’ lives are ‘no different than the rest of the autistic population’, so stop complaining already (anyone else feeling like punching something?)

Yes, some autistics have the same level of care needs that PDAers do, and yes some PDAers are relativey ‘easier’ to care for and that level is in line with some autistic children. The main point that Wood is missing is that when we accomodate a PDAers needs their care needs do reduce. And when autistics needs are not accommdated for their care needs will increase. Saying that PDAers are ‘harder to look after’ than autistic people is rather insulting and ableist. Thanks for that Wood.

Although I’m sure research would show that due to the nature of PDA demand avoidance, parents of PDAers do have higher care needs in regards to the placement of accomodations. But parenting is not, and should never be, a comparison of ‘who has it harder’, PDAers and autistics and even allistic and neurotypical people all find parenting hard to some degree, this is not an argument anyone should ever be having except when issuing help and support for families are individual needs, regardless of neurotype and disability.

And I haven’t even touched on adult care needs and support needs.

There are also many issues of what the PDA label actually does? Which have not been conceived let alone considered or researched; what are the side effects of the label? There is a consensus at least among supporter of neurodiversity (which also includes non-autistic persons) that thve medical based language of autism has serious problems for autistic person such as; stigma, discrimination, psycho-emotional disablement leading mental health issues, oppressive power relations and worse cases mercy killings by autism parents.

What does the label actually do? I’ll just direct you to my blog post – “What do we want?” “A PDA diagnosis!” “When do we want it?” “Yesterday!”

What are the side effects of the label? Possible misdiagnosis, the same with any label. Can’t think of any other negatives, but oh look, Wood has done the leg work for me, let’s take a look. But first, for those unaware of the Neurodiversity Movement and the medical and social models, here’s a link.

And in case you agree that PDA is largely rooted in the medical model, here’s a Link to one of my blog posts that explains why I may still use some words from the medical model. We may be slightly behind the autistic Neurodiversity Movement but we are catching up. You can’t rush progress. Sorry we don’t match your privileged standards (eye roll).

Many PDAers and PDA families subscribe to the social model and Neurodiversity, maybe you’re looking in the wrong place Wood. And It’s a bit ridiculous to go on about PDA not being fully subscribed to the social model when the PDA community is not the one pushing ABA, fake cures, child abuse and eradication of autism. Maybe instead of nitpicking on PDA you coukd join the autistic people who are fighting to stop abuse of autistics. If you really care about your people!

PDA proponents seem to ignore that most autistic persons want better services and support and not another label; arguably most autistic people do not want autism in the diagnostic manuals, which is the exact opposite of what PDA proponents trying to do (get PDA into the diagnostic manuals). They discount autistic persons tend to dislike behaviourism because it judges us to non-autistic societal norms and seeks to turn us non-autistic, typically autistic persons disagree with ABA and other behaviourism approaches that PDA is a part of. Do these opinions not matter to the PDA supporters?

Aaaand here we get to the meat of it. Apparently, us PDAers and PDA families ‘seem to ignore that most autistic persons want better services and support and not another label’. Hands up if you believe this to be true? Do we not care about getting better support and services for all those who need it? Feel free to tell me in the comments if you agree.

Trust me Wood, we all want better services and support, we know how shit help is in many countries, we have been turned down and turned away from help far too many times. Trust me when i say we want nothing more than better support and services. Thanks for the insult though.

We want PDA to be in the manuals BECAUSE we want better support and services, many just want access to the exact same support and services non-PDA autistics have. But because too many are unable to get a diagnosis of autism because we present differently we are cut off from the (limited) support and services autistics get. But thanks for sharing your privileged attitude.

I’m still struggling to understand this bit ‘typically autistic persons disagree with ABA and other behaviourism approaches that PDA is a part of.’ Aside from the fact that nearly everyone in the PDA community knows ABA is BAD and the fact that, even if it wasn’t, ABA would never work on PDAers, I think you’ll find that the PDA community is almost fully against behavioural therapies such as PDA. In fact, PDA strategies aim to promote autonomy and respect. I’m pretty sure that is the complete opposite of ABA.

I don’t understand how PDA is part of any behavioural approaches, unless you count the fact we see behaviour as communication?

Do those opinions not matter to PDAers? I think you’ll find (as autistics) that those opinions not only fully matter but are also inline with our own opinions. As explained above, the PDA community DOES NOT agree with ABA or any other behavioural therapies which seek to change autistic people. Get your head out of whatever dark box it’s stuck in!

An example of something that has not been considered about PDA is that it likely places considerable psychology pressures on parents to always utilise PDA strategies on PDAers, as argued by Christie et al (2012). One could even argue it is bad parenting to not always use the recommended adjustments.

I swear this guy only wrote this to insult and piss us all off.

In the PDA community we have a saying “do whatever works”, maybe you’d know this if you bothered to even get to know PDAers and their families. We don’t come down on parents who don’t always utilise the PDA strategies, we know full well that demand avoidance is so varied that sticking to set parenting strategies would cause more problems. We would never say that not using the PDA strategies is bad parenting, haven’t parents been through enough criticism, they don’t need more from their own people.

How dare you!

The only time we would push for PDA strategies is if we can see they are not being used when using them would help. Sometimes parents forget how pervasive demand avoidance is so they need gentle reminders to use autonomy and respect and choices as much as possible.

PDA doesn’t place considerable psychology pressures (I think he meant psychological) on parents anymore than choosing to adopt peaceful parenting or attachment parenting or autonomous parenting styles does. But thanks for saying using more respectul parenting styles with children is akin to psychological pressure. It’s easy to report to controlling and disrespectful parenting styles that traditional parenting includes. “Come here now” “Do this or else” “no screen time for you” “go to the naughty step”.

Yes, respectful parenting is harder, yes it’s easier to control and dominate children, unless you have a child who sees your ‘positive behavioural strategies’ aka rewards for ‘good’ behaviour as a demand to be avoided. But yeah, keep saying PDA is all about behavioural approaches and that parents should continue using harmful parenting techniques because in your OPINION that is less psychological pressure. (Clearly has never tried to parent a PDA child. Has his head in the clouds).

 I find it highly offensive how PDA is largely portrayed; “it is a part of the autism spectrum, first mentioned in the 1980s, provides support for PDAers and removes socials barriers etc. etc.”

He finds it highly offensive, aww didums! Because his post isn’t offensive at all. Nope, not at all! (Eye roll).

Most of that is basically propaganda and possibly miss selling their product as PDA is a commodity (Woods 2017).

( Laughs hysterically) I like how he referances his own work (cue more laughter).

I feel sorry for PDA parents and PDAers who are being exposed by those selling PDA because the case for PDA is overstated, a lot it is based assumptions (such as surface level Theory of Mind), myths (that PDA removes social barriers, it likely creates as many as it could remove), politics (such as Christie’s involvement in Autism Education Trust is the likely reason why it supports PDA) and reputations (NAS and AET supporting PDA etc.). Most of the case for PDA does not survive critical thinking and those selling PDA like NAS are aware of PDA flaws. It is the reason why I say if people have a problem with my views take it up with those who are selling PDA.

He feels sorry for us, we should be blessed (snorts).

The theory of mind theory is garbage.

PDA removes social barriers? (shrugs) I don’t know what He’s going on about here.

Politics and reputations? Because Wood has absolutey  none of those (eye roll).

NAS is selling PDA? That’s why the Milton who will be speaking in London along with Wood on how PDA doesn’t exist, works directly for NAS. Guy can’t even get his facts straight.

If we are being sold PDA does this mean we get benefits and discounts? No? Oh well I might unsign from PDA then (eye rolled so much my eyes have fallen out).

He says if anyone has a problem with HIS views then to take it up with those selling PDA. Uh! No, I’ll take my problems with YOUR views up with YOU since YOU are the one sprouting YOUR views. Talk about trying to shirk responsibility.

If needs based approach was properly supported and resourced it would work, which most people accept is currently not happening due to the effects of austerity (do you think it is coincidence that rise in support PDA has happened simultaneously as austerity?)

Yeah! We know. That’s why we are fighting for PDA to be diagnosed, so we can get support and services. We wouldn’t need to do this if a needs based approach existed.

Stop trying to put barriers in our way!

You want us to not need a PDA label? Then go set up a needs based approach to care instead of trying to stop us accessing help the only way that is currently available (swearing insults in my head).

There are alternative ways of providing support such as using universal design in schools. They practice universal design in USA universities as it is a legal requirement. There is whole literature critiquing the use of labels to provide support, I suggest looking at these open access journals:

• Autonomy, the Critical Journal of Interdisciplinary Autism Studies.
• Canadian Journal of Disability Studies.
• Disability Studies Quarterly.
• Scandinavian Journal of Disability Research.

Researching these journals will help you get an idea of what is out there.

Great, we’ll just do that then (rolls eyes).

He doesn’t want us using PDA strategies and fighting for a PDA diagnosis so we can get people such as teachers in schools to use PDA strategies THAT WORK! But he wants us to use ‘alternative ways of providing support’ (is this guy for real?).

Not to mention that some PDA children are totally unable to manage school no matter what supports and accomodations are in place, even if the whole school is adapted to cater for their every need, the demands and anxiety is just too much. Of course he would know this if he’d bothered to speak to actual PDA families.

Overall I do not believe PDA is a case of Occam’s Razor; it is part of the autism spectrum and centred on high anxiety driven need for control. I think there are many things that all contribute to the construction and operation of the PDA and we will discover these in due time.

But, but, but… PDA doesn’t exist? It’s not autism? PDAers are just autistics that have been brainwashed into believing PDA exists when it’s not (I’m going to die from these eye rolls).

It’s not an anxiety driven need for control, anxiety and a need for control are symptoms of demand avoidance.

He thinks there are many things that contribute to PDA and that we will discover them in time (another eye roll) what’s this ‘we’ he speaks of, PDAers most likey do not want this guy and his ableist opinions anywhere near future PDA research, I certainly don’t. And we already know what makes up PDA, here’s some blog posts on it:

Is anxiety at the root of PDA?

Why anxiety isn’t the cause of demand avoidance

Autistic Demand Avoidance vs Pathological Demand Avoidance

Not that he will listen. He doesn’t want PDA to exist because it interrpts his nice little world, privaliged much?

And in case he does ever deign to read this post, it would be nice if he stuck to this list of 10 things not to say about PDA

I could go on all night about this guy’s insulting, ableist, privaliged opinions, but I think everyone reading this probably knows just how horrible this guy’s views on PDA are. It must be nice to be able to speak about other people’s lives from a place of privalige. He hasn’t experienced PDA nor had to live with PDAers, he doesn’t know our lives, our struggles, our fights. He doesn’t know how hard it is to get help, how much parents are blamed for their child’s struggles, how much we PDAers are blamed and insulted and abused.

Nothing about us without us!