Is my child (and am I) PDA?

All the resources that have helped me figure this out.

Hi lovely people!

This Monday post is about PDA, which officially stands for Pathological Demand Avoidance, but some of us prefer to call Pervasive Drive for Autonomy ;)

PDA is a profile of autism, and there is a degree of debate around whether you can be PDA and NOT be autistic. The general consensus, and where the PDA society stands on this, is that it is best seen as a profile of ASD (Autism Spectrum Disorder), but there are alternative views on this. On top of that, there is also a degree of debate about what PDA is and whether it even requires its own terminology - this may explain why it is not a formal diagnosis in the DSM and other diagnostic manuals, and is also not very well known in the US and other countries.

Some countries, likes the UK, are a little more ahead in terms of recognizing PDA as its own diagnosis, while others see it more as a symptom of autism eg. demand avoidance, and don’t have a separate label for it, and others don’t actually thing it’s a thing at all.

The British psychologist Elizabeth Newson developed and named the PDA profile because she observed it didn’t fit within the ‘typical’ presentation of autism, and PDA individuals were often missed or diagnosed later for this reason.

I am not in any way an expert on PDA or autism and I’m only offering resources that have helped me to figure this out. I have a child who is most likely PDA autistic (we are in the process of assessing this), and knowing this for the past few years has helped me care for him in ways I would never have been able to otherwise.

While having a label is crucial for many children and adults, for us it has helped for one main reason: it has supported us in shifting from “He won’t” to “He can’t”.

This mindset shift has meant accepting both our children for who they are NOW, lowering demands and expectations, and meeting them where they are.

My second point is also: I see myself in so many PDA traits. I have no diagnosis and I am still figuring things out, but I see my young self in the PDA profile and it has been eye-opening and so validating to have all of the information and support I was able to access around PDA.

Lastly, I approach PDA from from the viewpoint proposed by the neurodiversity movement (a term coined by Judith Singer), (which owes debts to but is distinct to the social model of disability), and sees brain diversity in humans as normal, locating many (but by no means all) of the challenges neurodivergent people experience in the way the world is set up for one type of brain and body, and fundamentally unaccepting of the many ways humans can be.

With that in mind, while the medical knowledge matters to get PDA recognized and correctly diagnosed, I think my understanding of it goes beyond that: it is about figuring out who I am, and also about really hearing and trusting what my child is telling me about their experience of the world.

I’m sharing with you what I know, what has helped me, and what is out there that might help you. Not all the PDA resources I’ve accessed have felt helpful or supportive for me, or for my child. But they might resonate with you, so I’ll share what a selection of resources in that spirit.

Note: none of the amazon links in this post are affiliate links.

Articles, research, psychological writing about PDA

PDA Society information sheet on what PDA is (the entire PDA society website is super helpful!)

A study by Newson et al to help distinguish PDA from other ASD diagnoses.

A study looking at the educational experiences of PDA children (PDA children experience a higher rate of challenges, exclusion and other barriers to learning and fitting in to educational settings)

PDA v. Demand Avoidance (this piece includes lots of good info about how PDA shows up, versus demand avoidance)

This is a really interesting paper about PDA behaviors and parenting strategies.

A book about food refusal and avoidance in children with ASD

Paper with a helpful summary of the PDA diagnosis, why it makes sense within an autism profile, and how it’s different to ODD

Lived experience writing about PDA

I haven’t read this book but it’s high on my list! A mother’s experience of understanding her PDA child, and their family’s journey.

Helping your Child with PDA live a happier life. I have not read this book, but it sounds interesting.

Kristy Forbes in an autistic PDA adult who writes about her experience on her blog.

Emma Svanberg

has written a parenting book, and writes a Substack about parenting as an autistic mother. I loved this piece specifically about PDA.

Instagram accounts and autistic adults who support parents caring for PDA kids

Lindsay is doing her best - Linday is mom to a PDA child, therapist and parent coach and I love her slides and shares on PDA. Posts like this one:

lindsayisdoingherbest

A post shared by @lindsayisdoingherbest

Amanda Diekman

Amanda Diekman

is an autistic mother of ND children, and I’ve learned so much from Amanada’s transparency about her days with her ND children, and the way she practices low demand parenting.

Casey Erlich Also mother to a PDA child, Casey focuses on PDA as a nervous system disability and science-based information to help us understand our PDA child

PDA Project Early childhood therapist sharing about PDA

Journeys with PDA ND parents supporting parents of PDA children

Unschooling Stanley Linsey is an ND mum to ND/PDA kids, unschooling and living alongside her children. Really inspiring account!

The Neurodiversity Mom New follow for me, and I’m enjoying this account so far!

Educating Ella Clare is super knowledgeable about neurodivergence, PDA, autism, trauma and disability. Definitely worth a follow.

educatingella

A post shared by @educatingella

90 Minute School Day Kelly is a homeschooler who focuses on educating ND kids. She also has a new podcast that focuses on child-led home education and neurodiversity.

Books

A Different Way to Learn by

Dr Naomi Fisher

is directed at parents of ND and PDA kids who struggle at school, or who are hoping to embrace self-directed education.

Me and My PDAis a guide for young people to understand their PDA. I haven’t read it but I’ve seen it recommended a lot by people I trust.

The Educator’s Experience of PDA. Essential for anyone who is an educator or works with neurodivergent children.

Low Demand Parenting. Really supportive, encouraging, honest book about parenting ND/PDA children and healing ourselves and our relationships in the process. I loved reading it.

Declarative Language Handbook Not specifically about PDA, but declarative language has been a great tool for us (my husband now uses it on me too! ha!)

PDA by PDAers A book recounting the stories of 70 PDA adults.

Can’t, not Won’t Storytelling, guidance and support for school avoidance.

Podcast episodes

There are SO many, but I’m going to share a few I’ve really enjoyed, specifically about PDA:

Sage Podcast on Declarative Language

Sage Podcast on Equalising Behaviour

Sage Podcast on Low Demand Parenting

The Neurodiversity Pod on PDA

The Neurodiversity Pod with Kristy Forbes on PDA

TILT Pod with Eliza Fricker on parenting a PDA kid

TILT Pod on Self-regulation with Stuart Shanker

I hope some of these resources are useful, please put your own favorites in the comments for others to see!!

A few last thoughts: I don’t talk super openly about PDA because I am still figuring it out, none of us have a formal diagnosis, and also I have feelings about whether it’s really the overwhelming identity I wish to claim. After all, I am many things. A mother, a writer, a neurodivergent person, a woman, a quilter and sewer and very amateur artist, a disabled person, a walker, a cancer survivor, a lover of coffee and chocolate (preferably together), a traveller, a wannabe homesteader (!!), an unschooler, a student, an advocate for children.. I am all of these things and so many more.

As far as my child goes, I hold strongly to the belief (which is personal to me, and absolutely not a judgment of what anyone else does) that this is predominantly their story to tell, their identity to figure out, theirs theirs theirs. So while I share a little bit, with permission, I think hard about what I share.

Additionally, I think we are dramatically and tragically short of resources for PDA and Low Demand Parenting that approach both from an intersectional lens. Please, if you know of any, reach out.

One such resource might be Unmasking Autism by Dr Devon Price. It is not uniquely about PDA, and it is aimed at adults. So I would definitely love to see a much broader range of voices talking about LD Parenting and PDA.

I think our thoughts and actions are incomplete without them.

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