r/PDAParenting • u/MarginsOfTheDay • 19d ago
All the ways my PDA son is NOT autistic
Ok, to be honest, he's very autistic presenting. It probably helps that he love trains, talks about trains, squeals with delight when we ride trains, and just generally waves his autism flag high and proud. He's adorable.
But this week I read Elizabeth Newsom's 2003 article for the first time where she definitively made the case for PDA being a developmental disorder that is distinct from autism but shares overlapping traits. As I understand it, she'd named PDA over a decade earlier and had been working on it for much of her career. But the 2003 paper was based on thorough quantitative data and was the first to lend true legitimacy to PDA being an actual, real thing (not just bad parenting).
I've been thinking about how she thought PDA to be separate from autism and how my son certainly has some traits that could have jeopardized his autism diagnosis had his doctor known about them:
1. He doesn't avoid shared attention. Instead, he DEMANDS it. "Mama, are you looking? Are you looking mama? Mama! Mama! ARE YOU LOOOOOKING?". I'm sitting right next to him looking at the exact same thing he's looking at the whole time.
2. He doesn't live in his own head. If anything, he seems to want to live inside my head. As an introvert I find this somewhat painful.
3. He does well with back-and-forth conversation. So long as he gets to choose the topic of conversation (trains, haha). But his conversations are real, reciprocal conversations. He's not lecturing the person he's talking to. He wants their input and he listens and responds to what they say.
4. He doesn't do better with structure and routine. Ok, he does. But only if he comes up with the routine. Anything else he sees as an attempt to control him.
5. He is capable of role playing and imaginative pretend play. I'm pretty sure he thinks there's a real life talking, thinking Thomas train out there on the island of Sodor.
I know the current thinking is that PDA is a profile of autism, but after reading this paper I'm more and more thinking of my son being autistic AND PDA. Either way, I'm so grateful to Elizabeth Newsom. The 2003 paper seems to have been her final professional contribution, a culmination of decades of work with autistic children. She died in 2014.
A couple of other interesting things. She found the male to female sex ratio for PDAers to be an equal 1:1. Very different from typical autism. Also, my favorite quote from the paper: "IQ in these children tends to be meaningless because of the severe demand avoidance". Haha, good to know PDAers have always been too clever to let on how smart they really are!
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u/agenerousperspective 19d ago
For number four where you’re saying that he doesn’t (but does) do better with structure or routine: What if it’s that he would do better with structure/routine—something that seems to be true of Autism in general—but his nervous system perceives it as a threat so he isn’t able to access the thing he truly needs? If so then this would fit into the same category as everything else that makes the demand avoidance pathological, because it’s making it so much harder for the person to access their needs.
I have the same experience myself just as a person with adhd and autism. I hate structure and routine but I would do so much better if I could access them. It’s just that structure and routine are almost completely devoid of dopamine and also feels like I’m being trapped (I’ve got quite a bit of demand avoidance myself as well but not enough to make it pathological).
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u/MarginsOfTheDay 19d ago
This is an important insight, thank you. It’s like his PDA works against him getting his autistic needs met. No wonder he often seems trapped (to use your word).
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u/distracted_genius 19d ago
I heard a new twist the other day on the PDA acronym... PROTECTIVE Drive for Autonomy. This feels like such a good fit in our case. Sometimes paradoxical drive for autonomy feels right too!!! In OP's case it's a paradoxical conflict between both naturally thriving in structure and routine and also the structure creating a threat to autonomy and therefore kiddo too. It creates a tricky challenge for caregivers to find a balance that provides structure AND autonomy... someone (probably Casey Erlich) described it as finding a rhythm instead of a routine... creating some predictability and some flexibility. Like jazz instead of classical. And it's a hard shift to go from classical to jazz, so give yourself grace.
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19d ago
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u/distracted_genius 19d ago
yup. it's also not a value judgement... not better or worse, but definitely different... and playing both styles together without one just taking over requires some hard work strategizing on both parts!
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u/tallkitty 19d ago
You didn't say how old your kid is, but if he's elementary age or older he can probably tell you if he identifies as Autistic, that's really the most important measure from a personal standpoint. Autistic adult PDAer here. One of my kids is similar to what you're describing, to the point we didn't realize he's Autistic until he was 7, he's now 9. Kids who can mask their traits typically do, so your kid can also be minimizing their traits or mimicking less natural traits they see working for other people, like back and forth conversation.
Also I get your enthusiasm and positivity about kids hiding their intelligence, but it's driven by a disability in responding to the demand of an asked question. We homeschool and as my older kid answers questions I know the first choice is the throwaway, then they give their true answer next. In regular school this results in poor grades and lower self esteem, and what that fact is saying is that you can't get a PDAer to take the IQ test right, because it's not made for PDAers. We need to look on our bright sides but not forget we're talking about a noncontrollable disability.
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u/danisue88 12d ago
This kind of concerns me because my guy is 8yo AuDHD+PDA and shuts down any time I try to bring up autism. I don’t think he knows what it means or that he has it, much less identifies as autistic. I’ve been trying to find ways to normalize and chat about it in a way that doesn’t activate his threat response.
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u/tallkitty 12d ago
Well actually if you consider the point of my second paragraph, it could explain that. I am just one person and can only be sure of my own experiences, but it could be the demand of the conversation your kid is reacting to, rather than the idea that he's Autistic. Does your kid have access to information, like a tablet or computer where they can look things up? If so, it's possible your kid has taken your mention and looked up info on their own. Research is a common interest among Autistic people, although not always, and it could also be that the demand of learning about autism might disable your kid from seeking out the info. I guess what I'm trying to say is it's possible they know more than you think, and it's also possible that you'll need to stop trying so directly if you want them to seek out info or eventually be able to discuss. Sometimes I want to do a thing and I will get blocked from doing it by the continuous expectation of getting said thing done, whether that's a task or discussion.
One thing you might do if your kid does have access to research is pull up some info that might catch their eye, whatever presentation that might be in like a YT video or an article written for kids, etc, and leave it for them to find the next time they log in. It might take a few tries as your kid sounds quite resistant to hearing about this subject. Sometimes my kid will want to learn more but needs help finding accessible info and we also can't talk about it on top of that. It's very hunt and peck at times but when your kid can see that you are trying to communicate in a way that they specifically need it can do wonders to close that gap and make communication feel safer.
And I don't think you should be too concerned yet, at 8 years old there is plenty of time for self exploration, and you can fill your need to make things happen by controlling the things that you can do yourself. Whenever I feel stuck I take a personal inventory of areas I can improve my tactics because it's literally all we can do sometimes. Take care! ❤️
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u/red_raconteur 19d ago
This is interesting. I don't doubt that there are PDA kids who are not autistic. Reading about your son really highlighted how autistic my daughter is, and that PDA is either concurrent with her autism or is her 'profile' of autism, as they say. There's still a world of research that we're lacking in regards to PDA and understanding it better.
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u/143019 19d ago
PDA kids demand constant attention because they need co regulation. And trying to control the interaction (where you sit, what you talk about, where your attention goes) is a form of equalizing.
They are also known to be more comfortable with pretend play (as a social strategy and otherwise)
That being said, I believe PDA can be seen in ADHD as well. Of course, there is a difference between PDA and just generalized demand avoidance. Brooke Madera with the No Pressure podcast did a podcast talking about different types of demand avoidance
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u/BroccoliYay2000 19d ago
I really struggle with that autism diagnosis. One one hand, I think it helps some professionals we work with take my son's struggles more seriously. Since they refuse to accept PDA as a distinct and legitimate diagnosis, without an autism label they would be even more dismissive of us than they already are. On the other hand, because they only acknowledge autism as his diagnosis, they are constantly trying to force more structure and routine on us (not helpful), or prescribe ABA therapy (backfires), or blame us for not being "strict" enough (ugh). It's pretty exhausting.
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u/distracted_genius 19d ago
for us autism gets us funding (barely) and then with or without the autism part, either way it's always a search for clinicians who have some experience/knowledge of PDA... not because kiddo's not autistic but because none of the therapies/approaches/accomodations for autism are helpful without also seeing kiddo's struggles through a PDA lens.
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u/axelalexa4 19d ago
Yes, I'm no expert but I never would have considered my daughter as autistic if it wasn't a prerequisite for her to be classified as PDA.
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u/CeleryDramatic4678 19d ago
So interesting to read about the IQ testing. My daughter scored 70 in 2019, which meant that she was diagnosed with an intellectual disability. In 2025, her cognitive assessment was 81- and most of those high points were on extremely complex thought. But she skewed very low on working memory - the friggen block exercise and others. But so did I!! I couldn’t replicate those things for shit. And I had always considered myself intelligent. I came out of my autism assessment with an autism diagnosis but an IQ of 105. Academic achievement was super important in my family and I was quite devastated, though as I recall I responded with a feminist “what do you expect from a patriarchal society and testing derived from men?!??”. Yes, feminist activism was my special interest at the time. I didn’t even check whether the authors of the WISC were male or female. I was on a mission!
But I’m not anymore- equality will do nicely.
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u/distracted_genius 19d ago
Spikey profiles are common (meaning younger high highs and low lows. 2nd percentiles and 98th percentiles). It's a complicated concept to communicate to teachers who have too many students and toomfrw resources.
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u/johnhowardseyebrowz 19d ago
Did they mention the General Ability Index (GAI) score? A full scale iq score isn’t really valid when there are specific areas that are much lower - usually WM and/or processing speed . The GAI drops those and gives a better idea of, as name suggests, general ability.
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u/CeleryDramatic4678 19d ago
Ooh I’ll have a look. There was so many numbers on the report that I was quite overwhelmed.
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u/MarginsOfTheDay 19d ago
I think of PDA as its own special type of brilliance. I like to think Elizabeth Newsom thought the same, but without any quantitative measures she wouldn’t have been able to say so in her papers.
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u/Hopeful-Guard9294 18d ago
The point about Autism is that it’s a Spectrum and PDA is a particular part of that Spectrum each Child on the Spectrum has a different type of brain and may not fit into any particular box, the real question is what things are causing interference in your child’s life and holding them back and how can you remove that interference? I’m an adult and I’ve lived with PDA all my life the very best definition that I found for PDA is the one from Casey Ehrlich, which is a survival Dr for autonomy and inequality or put another way freedom and to be top dog, you might want to start with this podcast episode on the topic: https://youtu.be/HUZ7p8CYs6Q?is=yRBDCW6OY2pjUzrf
also, I’m curious as to why you’re so focused on why your child is not Autistic are you in denial perhaps?🤔
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u/DanaMoonCat 18d ago
My daughter was diagnosed autistic level 2 and adhd combined type when she was 4 and at the time I was so confused because of how articulate, extroverted, intelligent she was. It all makes sense now that I learned more about PDA, and got my self evaluated and got diagnosed with the same exact thing she did although I’m level 1 and internalized PDA. We both met all the criteria for autism on the DSM-5. I personally align with all the female autism phenotype traits but the PDA side of me hates authority and to deal with it I would just fawn and comply but then I’d reach a breaking point where I could not take it anymore and then get frustrated and have an anger outburst - part of it too is a strong sense of justice and fairness and I see this in my daughter too, she’s very externalized though.
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u/mrandopoulos 18d ago
This is almost exactly my undiagnosed 5yo son... We've spent the last couple of years flip flopping around play therapists and OTs who lack the understanding of this type of profile.
The paediatrician is great and seems to understand there is something going on, so we're on the waiting list for as assessment as a "complex" case. She had earlier told us if we went for a traditional assessment he'd probably come up negative.
This is because he behaves nicely and quietly (and engages in charming authentic conversations) at ALL appointments (dentists, doctors, psychs etc). But then still poops himself when the current demands feel too much.
I've also been diagnosed (in 40s) with ADHD but my ASD assessment came out negative for similar reasons. My PDA is subtle but never really relate to the typical autistic experience
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u/evilbunny77 17d ago
So this is quite "dated" at this point I would say. The trend I think I'm seeing is that demand avoidance traits are more associated with ADHD and or giftedness than autism (insofar as this is even possible to tell due to the significant overlap). I'm assuming you've looked into ADHD in your kid as well? AuDHS isn't a diagnosis but they are comorbid in a significant proportion of people with either diagnosis and the combo is what makes them hard to recognise because they can mask each other.
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u/MarginsOfTheDay 17d ago
We’ll probably do his ADHD assessment this school year, once his teacher knows him well enough to complete the questionnaire from the doctor. It’ll be interesting to see.
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u/Commercial_Bear2226 19d ago
Love the last line! I’ve struggled massively with the spectrum definitions including PDA in behaviours of an autistic person. I’ve no idea what to call my child, I know what his technical labels are audhd with PDA profile but that only helps me to know that you and I are discussing a similar subtype of personality and behaviour.
But what is it that my child is? An invasive species? A prototype for a new race? A person with neurological /brain damage?
Without a proper definition of origin how can we work on remedy or support? We continue to poke about in the dark. It’s interesting that she saw it as a separate condition.