Trigger warnings – diagnosis, medical model jargon used, descriptions of demands. Plus, I tend to write like a lecturer with a big stick up my bum, sorry!
We are starting our work experience programme for young people, who are out of education, soon. We might be working with two young people, who have a diagnosis of autism with PDA traits, so I have been busy finding out more about this. I thought I would share what I have learnt so far, while fully acknowledging that I have no expertise or lived experience of PDA.
PDA is a rare (or maybe just under diagnosed?) part of the autistic spectrum. It is characterised by avoiding demands. Demands are expectations, commands, pressures, obligations; essentially, anything that is not generated by the PDAer is perceived as a demand. To a degree, we all do this; I have been putting off writing this blog post for over a week! People, who are on other parts of the autistic spectrum, may be more likely to show demand avoidance when they are stressed too. PDAers, however, experience demand avoidance more frequently and with far greater intensity that neurotypical people do in their everyday life; hence it is Pathological Demand Avoidance. The demand avoidance is also strongly linked with intense anxiety. It didn’t seem clear to me how this mechanism exactly worked, and, I think, this is due to a lack of understanding about PDA rather than me not understanding the literature. It could be that demands trigger intense anxiety and this leads the person to use avoidance techniques. However, some PDAers feel that demands automatically lead to avoidance, and that causes them anxiety because it often leads to conflict with other people or other negative outcomes. The avoidance techniques used can be extreme too: falling to the floor, spitting, violence towards others, self harm, shutting down. Although, there are plenty of PDAers who mask their anxiety so no one else is aware how hard they are working or how challenged they are by the social world.
Demands are a massive part of life, but neurotypical people hardly notice that they are everywhere! Demands can be intrinsic (coming from within us; e.g. a rumbly tummy demands that we eat something soon) or extrinsic (in the environment; e.g. a traffic light turning red demands that we apply the brakes). Demands can be explicit (e.g. a teacher telling us to turn to page 36 in our Maths book) or implicit (e.g. someone telling us that they have turned on the hot water system so there is enough hot water for a shower; the implied demand is “have a shower!”).
I am writing this in the morning. I have just completed getting my children ready for school and doing the school run. The sheer number of demands on me and the Allergy Brothers in that process becomes overwhelming when you start to think about it: getting up when the alarm goes off, making packed lunches, making breakfast, eating breakfast, having a shower, getting dressed in school uniform, brushing teeth, combing hair, putting on school shoes, choosing clothes to match the weather, getting out the door at a set time (might have failed at that one actually…), etc, etc. If each of those demands triggers intense anxiety, then getting ready for school becomes a emotional ultra marathon. At least, I have returned home. Today, my time is my own until I collect the boys from school. I am working on Allergy Brothers business, but I am choosing to do this. The Allergy Brothers are at school, where there is another barrage of demands: responding to registers, sitting in a specific seat, being quiet, listening, lining up, sitting in assembly, and more, and more through out the day. It’s no wonder that so many children with PDA fail to thrive, or even survive, in a traditional school environment.
Unfortunately, it is hard for young people with PDA to access the support they need to be successful. The first stumbling block is that PDA is not widely known about, and that was my motivation for writing this blog post. The second problem is that PDA is not recognised in either of diagnostic manuals (ICD and DSM) that professionals use. This has led to a postcode lottery, where some areas diagnose PDA and other areas don’t. We live in Essex in the UK. PDA is not a diagnosis recognised in Essex, although people can travel to clinics in London, Norfolk or further afield for diagnosis. However, it may then prove difficult to get organisations in Essex to accept these “out-of-county” diagnoses.
Misdiagnosis is also a big issue. PDA is part of the autistic spectrum so there are traits shared with other forms of autism, such as a lack of understanding of neurotypical social behaviour, obsessions, etc. This can lead to a person being given the diagnosis of autism rather than PDA, and this can be disastrous. The strategies that support an autistic person (visual timetables, first-then boards, plenty of warning about changes, sticking to a routine) are often demands! Therefore, these strategies would make things worse for a PDAer. The Allergy Brothers and I have been writing letters to Beth, a young person with PDA. Her story, told here by her Dad, shows how badly things can go wrong when a diagnosis is wrong.
The further stumbling block is that it is possible for PDAers to thrive, but that requires flexibility, adaptability and empathy from others. These are all things that institutions, like a school, struggle with.
I don’t want this to be a negative post, but it would be unfair to not recognise the struggle families have to access appropriate education in Austerity Britain, and also the gargantuan effort that PDAers put into surviving in a neurotypical world. I am going to finish with the positives of PDAers. Many PDAers are loving, creative, imaginative, caring, courageous and resilient. As adults, they can craft lives that they can control, and achieve in the worlds of work, relationships, and parenting.
If you would like to know more about PDA, I recommend going to the horse’s mouth, and reading the book “PDA by PDAers“, compiled by Sally Cat (N.B. – this is an affiliate link.) Also, the PDA Society website offers a wide variety of information for adults with PDA, families and professionals.
Finally, please let me know if there are any corrections that need to be made. I would especially like to hear from those with lived experience of PDA. Have I got this right? Can you tell me more about what you would want from a work experience programme? Thank you.
Thanks to Helen M., who offered suggestions on this post. She pointed out that PDAers are just as likely to shut down as they are to be aggressive in response to demands. She also recommended the following resources : PDA Parenting blog, Riko’s Page blog, Steph’s Two Girls blog, Harry Thompson’s YouTube channel, and The National Autistic Society website. Thank you, Helen!