Thank you Fran for this post! You were so helpful in gathering community resources in the past when I’ve asked about it and it’s nice to see an update. Also in the are-we/are-we-not PDA category and anyway a different way of doing things is beneficial for us all. If you and your son are open to sharing I’d love to know how you broached the subject about going after a diagnosis or not.
There are solutions to not wanting to brush your teeth, following others’ timetables, required clothing ... I have known children and adults for whom these things were choices not demands. I think it is up to parents to keep it all in the choices realm. Does that make sense? We can cancel appointments, dress as we please etc. Of course a parent has a responsibility to help a child learn about societal customs but the choice to follow or not belongs to the child and the parent then supports those choices, no? The goal I think is to reshape the world to fit our unique kids and selves and not the other way around. I’m still not quite getting it tho I feel my response has a bit of resistance in it. Perhaps it the mama bear in me protecting my kids and my kid self. Not entirely sure :)
I agree that it’s our responsibility to reshape our world so it works for our unique selves. I don’t like the idea of arguing about if a disability/identity should exist, though. I can’t tell from your comment if you have experienced PDA-like meltdowns in your children from general day-to-day expectations/activities/interactions. The word “demand” is used when there is an expectation that becomes too hard to meet. I think we all have expectations of others we interact with, whether they’re hidden or overt. The expectation they eat something we make, the expectation they sleep when we’re sleeping, the expectation they can voice opposition to a choice, the expectation they respond when we ask them a question, the expectation they exist safely around others. These basic (in the neurotypical world) things can become debilitating my difficult to navigate.
Hello Mei … thanks for responding. I don’t mean to suggest if a disability should or shouldn’t exist, but I do think it might be worth considering the lens through which the “expert” dxs come through. To me it seems they are filtered through a lens of mainstream parenting values : ie re demands and expectations. It’s easy and quite common to assume those are givens or “just the way things “are” … but I would challenge that assumption in a family where children are helped to have their preferences met or helped to find even better preferences :) Hope that makes sense.
Agree that we absolutely don’t need a doctors diagnosis but that sometimes for some people it can really help to get support, get others on board. Francine I hear what you’re saying but I’m not sure I really understand it. Demands and expectations just exist. And autistic PDA adults have a really tough time of just being in the world, anecdotally, no matter how non-mainstream they were parented. Same for PDA kids. I do agree that part of it is mainstream parenting, part of it is the way the world is structured and our environments have become so rigid. But from what I’ve seen, my child still very much ticks all the PDA boxes no matter where you put him. Also some PDA ppl externalise so the express their extreme dysregulation outwardly - violence, meltdowns, etc and others internalise so it doesn’t look the r same for everyone. I think you are willing to go all in on PDA and what it is once you’ve actually experienced it or had a child who experiences it.. I can see how it’s hard to understand if your child just isn’t autistic or isn’t PDA. But it is next level dysregulation that no matter how few demands you may have, still exists. And yes low demands means things get easier for the child and they may gradually be able to stretch that window of what is okay. But I still experience demand avoidance even around things I want to do, and it’s not easy. Ontop of that, it’s not just demand avoidance. If you read the symptoms in the link I posted to the PDA society there are several more things to look out for. It’s a complete profile of autism. Lastly, many people don’t enjoy demands but they can still make themselves do things or at the very least stay calm while they say no. Not PDA kids, for the most part. I get there is a temptation to make everything about the environment, and while I don’t subscribe to the deficit model of ND, I think brain diversity is simply a fact and evolutionarily normal. So if we call someone ADHD or PDA it’s not that we’re saying they’re wrong somehow, they’re simply different in special ways. A lot of people find that getting to know themselves helps them not blame themselves for what they struggle with - I’ve found that and I think my son does too!
Yes, thanks for clarifying. That’s been a big part of why I haven’t sought after a diagnosis for my child. I don’t really need a doctor’s “expert” opinion to tell me how to/his not to treat my child. Since birth I have been very disappointed in their lack of regard for respecting babies and children.
Forgive me for not having read the entire article through. Some of that is a time factor but a part of it is my knee jerk resistance to the whole idea of PDA. Oh no! Does that mean I probably have it?:)
First of all why would we make demands of our loved ones? I made requests of my family but they were always free to say no. We would work to find solutions that would have all our needs met.
As for expectations, I don’t know why I would have expectations for my family. The very idea of expectations on others seems deeply coercive to me. Certainly there would be discussions about cultural expectations they may run into, but it is entirely their choice as to how to and whether or not they will choose to address those expectations.
I agree with what you're saying about demands and expectations. I think the crucial thing about PDA is that PDAers have an extreme nervous system response to demands - and by demands, that means everyday things like brushing teeth, or demands put on themselves, or demands from others (not necessarily family members) such as, for example, having to be somewhere by a certain time, or having to wear a specific thing. Demands in this context don't have to be direct demands, they can be anything that feels like a stretch or too much for someone. PDA impacts your nervous system on the most basic level, where even something that is seemingly not a demand, or wouldn't feel like a demand to others, will trigger a dramatic nervous system response. Hope that answers your question?
Thank you Fran for this post! You were so helpful in gathering community resources in the past when I’ve asked about it and it’s nice to see an update. Also in the are-we/are-we-not PDA category and anyway a different way of doing things is beneficial for us all. If you and your son are open to sharing I’d love to know how you broached the subject about going after a diagnosis or not.
Will do when I have a sec!!
I can relate to you and so appreciate you sharing all the resources 💗
There are solutions to not wanting to brush your teeth, following others’ timetables, required clothing ... I have known children and adults for whom these things were choices not demands. I think it is up to parents to keep it all in the choices realm. Does that make sense? We can cancel appointments, dress as we please etc. Of course a parent has a responsibility to help a child learn about societal customs but the choice to follow or not belongs to the child and the parent then supports those choices, no? The goal I think is to reshape the world to fit our unique kids and selves and not the other way around. I’m still not quite getting it tho I feel my response has a bit of resistance in it. Perhaps it the mama bear in me protecting my kids and my kid self. Not entirely sure :)
I agree that it’s our responsibility to reshape our world so it works for our unique selves. I don’t like the idea of arguing about if a disability/identity should exist, though. I can’t tell from your comment if you have experienced PDA-like meltdowns in your children from general day-to-day expectations/activities/interactions. The word “demand” is used when there is an expectation that becomes too hard to meet. I think we all have expectations of others we interact with, whether they’re hidden or overt. The expectation they eat something we make, the expectation they sleep when we’re sleeping, the expectation they can voice opposition to a choice, the expectation they respond when we ask them a question, the expectation they exist safely around others. These basic (in the neurotypical world) things can become debilitating my difficult to navigate.
Hello Mei … thanks for responding. I don’t mean to suggest if a disability should or shouldn’t exist, but I do think it might be worth considering the lens through which the “expert” dxs come through. To me it seems they are filtered through a lens of mainstream parenting values : ie re demands and expectations. It’s easy and quite common to assume those are givens or “just the way things “are” … but I would challenge that assumption in a family where children are helped to have their preferences met or helped to find even better preferences :) Hope that makes sense.
Agree that we absolutely don’t need a doctors diagnosis but that sometimes for some people it can really help to get support, get others on board. Francine I hear what you’re saying but I’m not sure I really understand it. Demands and expectations just exist. And autistic PDA adults have a really tough time of just being in the world, anecdotally, no matter how non-mainstream they were parented. Same for PDA kids. I do agree that part of it is mainstream parenting, part of it is the way the world is structured and our environments have become so rigid. But from what I’ve seen, my child still very much ticks all the PDA boxes no matter where you put him. Also some PDA ppl externalise so the express their extreme dysregulation outwardly - violence, meltdowns, etc and others internalise so it doesn’t look the r same for everyone. I think you are willing to go all in on PDA and what it is once you’ve actually experienced it or had a child who experiences it.. I can see how it’s hard to understand if your child just isn’t autistic or isn’t PDA. But it is next level dysregulation that no matter how few demands you may have, still exists. And yes low demands means things get easier for the child and they may gradually be able to stretch that window of what is okay. But I still experience demand avoidance even around things I want to do, and it’s not easy. Ontop of that, it’s not just demand avoidance. If you read the symptoms in the link I posted to the PDA society there are several more things to look out for. It’s a complete profile of autism. Lastly, many people don’t enjoy demands but they can still make themselves do things or at the very least stay calm while they say no. Not PDA kids, for the most part. I get there is a temptation to make everything about the environment, and while I don’t subscribe to the deficit model of ND, I think brain diversity is simply a fact and evolutionarily normal. So if we call someone ADHD or PDA it’s not that we’re saying they’re wrong somehow, they’re simply different in special ways. A lot of people find that getting to know themselves helps them not blame themselves for what they struggle with - I’ve found that and I think my son does too!
Yes, thanks for clarifying. That’s been a big part of why I haven’t sought after a diagnosis for my child. I don’t really need a doctor’s “expert” opinion to tell me how to/his not to treat my child. Since birth I have been very disappointed in their lack of regard for respecting babies and children.
Forgive me for not having read the entire article through. Some of that is a time factor but a part of it is my knee jerk resistance to the whole idea of PDA. Oh no! Does that mean I probably have it?:)
First of all why would we make demands of our loved ones? I made requests of my family but they were always free to say no. We would work to find solutions that would have all our needs met.
As for expectations, I don’t know why I would have expectations for my family. The very idea of expectations on others seems deeply coercive to me. Certainly there would be discussions about cultural expectations they may run into, but it is entirely their choice as to how to and whether or not they will choose to address those expectations.
What am I missing? Thanks...
I agree with what you're saying about demands and expectations. I think the crucial thing about PDA is that PDAers have an extreme nervous system response to demands - and by demands, that means everyday things like brushing teeth, or demands put on themselves, or demands from others (not necessarily family members) such as, for example, having to be somewhere by a certain time, or having to wear a specific thing. Demands in this context don't have to be direct demands, they can be anything that feels like a stretch or too much for someone. PDA impacts your nervous system on the most basic level, where even something that is seemingly not a demand, or wouldn't feel like a demand to others, will trigger a dramatic nervous system response. Hope that answers your question?