It’s baffling, ridiculous and counterproductive. Why is it so hard to get a PDA diagnosis? At the least, we get told they’re not Autistic, they don’t score enough points, they’re just naughty or bad or deliberately defiant, at best we get a diagnosis of ASD with demand avoidance and we have to be happy with that. But we aren’t happy, it’s not enough. Yes the words are there that describe the behaviours, PDA is an ASD so surely that should be enough? PDAers have demand avoidance so saying ‘with demand avoidance’ should be enough? Right?
Nope! It’s not ‘enough’ because it’s missing the point. Yes PDA is an ASD and there is demand avoidance, but any Autistic person can develop demand avoidance, even to the degree that PDAers have it, but it’s not the same.
For a start, PDA is so much more than just demand avoidance, by labelling them as ASD with demand avoidance they are missing out on important traits which are different from Autistic traits, this can lead to those behaviours to be mismanaged.
Secondly, labelling a person as ASD with demand avoidance implies the demand avoidance is an add on, something that has developed outside of Autism. Yes, this is true in Autistics with demand avoidance, but it’s not true for PDAers. Demand avoidance is intrinsic to PDA, it’s the crux and baseline of PDA. Autistics can develop demand avoidance and they can manage their difficulties and get help to lesson and even maybe stop demand avoidance. This is not true of PDA, you can help PDAers reduce their demand avoidance, manage it even, but it will always, always be there, no matter what we do.
By using the diagnosis of ASD with demand avoidance it doesn’t necessarily ensure the correct accommodations are used. If an Autistic person who has really bad demand avoidance has an ASD with demand avoidance diagnosis, and a PDA person has a ASD with demand avoidance diagnosis because clinicians refuse to give out standalone PDA diagnosis, how do we know they two people will be given different accommodations? Why should they? If they both have the exact same label then why should they be given very different accommodations? Surely two people with the same label need the same help? See the problem! Not every will know that two people with the same label may need very different help, and they do need different help. Yes, they both need a reduction of demands but using humour, games and making changes to demands might cause an Autistic person more anxiety resulting in more demand avoidance, whereas that may work for a PDAer. Having a PDA diagnosis ensures the people working with the PDAer know they may need specific accommodations, and if they don’t then surely just having a PDA diagnosis will mean they will need to learn what different accommodations are needed, they wont make assumptions based on experience working with Autistic with demand avoidance. You’re not going to see a person with an ASD with demand avoidance diagnosis and a person with a PDA diagnosis and think “oh they must need the same help”, the fact they have different diagnosis shows that they need different help.
And it’s not enough to just add onto the piece of paper that explains the person’s diagnosis that people should be using PDA strategies for a person diagnosed as ASD with demand avoidance. Is every person who comes into contact with that person going to take the time to read that piece of paper? Do we have to photocopy out the paper and hand it out to every person we meet so they don’t misunderstand the diagnosis, when simply telling them they have PDA would suffice? It’s clumsy and annoying and not very helpful. There are plenty of people who know a person’s diagnosis and make assumptions despite being given that piece of paper, because they think they know better and so don’t need to read a doctor’s recommendations. They see the person’s diagnosis and decide based on that what help they will give, and no amount of writing will change their minds.
A diagnosis is the first thing a person hears about someone, assumptions will be made and so it’s extremely important that the diagnosis accurately reflects that person’s disability. ASD with demand avoidance doesn’t accurately reflect a PDAers disability and difficulties. It accurately explains an Autistic person who has high levels of demand avoidance, but a PDAer is not an Autistic with high levels of demand avoidance, they are a PDA person, Autistic, intrinsic, pathologically demand avoidant with many other traits unique to PDA.
“What do we want?” “A PDA diagnosis!” “When do we want it?” “Yesterday!”