Autism and PDA

Iour May 2025 support group for parenting 2e kids, Tarra Knotts discusses the traits and experiences of students with PDA (Pathological Demand Avoidance).

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Read the transcript here

I think I ran into real to eat before I ran into parents helping parents. But anyway, I've been running the PDA, pathological demand avoidance or pervasive drive for autonomy parent group with parents helping parents. Originally it started in real 2 and then we moved it over to parent helping parents. We meet on the fourth Thursday of the month at 7:00 p.m. on Zoom and then again on the second Sunday of the month on Zoom.

So the Sunday one's coming up. Yes, it is on Mother's Day and I'm going to do it anyway. Just to I guess it's hard for me to see comments, but if anyone wants to chime in that they have a kid that this seems to make sense for, just chime in.

We have it it's a term coined all the way back in the 80s in the UK by Elizabeth and Ann Newsome. I think they recognized that it was some sort of neurodiversity, some sort of autism, but it wasn't behaving. The normal approaches to autism, behavior therapy and stuff like that weren't working. These kids like change. They don't do well with rules and regulations, opposite of many many other kinds of versions of autism.

It's not exactly Asperger either. Very commonly occurs with anxiety, depression, mood disorders, oppositional defiant disorder, ADHD, and guess what? Twice exceptionality. Many of the PDA kids are very bright, at least in some areas, maybe not every area, but they are independent thinkers.

It's not uncommon for them to be LGBTQIA as is many neurodivergent people tend to not pay attention to the social norms and they are more their authentic selves. They don't look as classically autistic for sure to the point where it can get very hard to get an autistic diagnosis because they are often highly verbal. They, you know, are bright. They look like they can understand social stuff, but their loss of autonomy or the bumping into demands can really throw them into a tail spin.

So again, loss of autonomy is a big one. Like a normal four-year-old, if you're like, "Hey Joey, can you go pick up the balls and throw them in the basket?" would be like, "No problem." But Joey, who is PDA, might have done that if you didn't tell him to. It's just that if you're gonna make me, I'm not going to thing.

They generally, like many bright kids, don't see a real hierarchy to this world. It's generally everyone's the same. There is not the higher the adults and the kids. Everyone's the same. The teacher and the kids same. Their nervous systems are extra sensitive.

They perceive their world they feel it bigger kind of I think sometimes people think autism doesn't pick up social cues I think in this case it picks it up but it overpicks it up. It might over interpret it might interpret as a threat it might interpret it extra negatively it might anyway it's over interpretation. Again they feel they look social and generally common autistic therapies don't work, but some mental health approaches work, counseling approaches, attachment, attachment work often helps with kids.

There's this is a book, Can't Not Won't. Going to blank on her name, the author's name. Anyway, there's a book that's titled Can't Not Won't. And it's it's kind of describes these kids as like they're always saying, "I can't, I won't." But they they want to and they just can't even make themselves.

They want to go to school, but they can't make themselves. They want to do their homework. They want to get a job. They want to have friends. And they just can't get over the anxiety and the intolerance for distress.

And so that's why more of a counseling approach can help these children. This is I took this from one of my PDA groups and I asked what are your common struggles? School refusal is super high on the list. So despite being bright, despite actually liking education, they can't get their can't get themselves to go to school or stay at school, it just feels too big.

Life refusal, you know, brushing teeth, changing clothes. They kind of live in defense mode. Some of them have very negative, you know, self-defeating sensitivities.

You know these are just some common quotes my my kid had my my kids avoid committing to activities even if they want to do them because it's an unspoken even if it's their own desire it's an unspoken expectation so then they don't want to do it. We run into this with my teen all of the time. I don't she's like I don't want to do my laundry cuz then you're going to expect me to do my laundry. I don't want to do well in class cuz then you're going to expect or I'm going to expect me to do someone's going to expect me to do well in class.

I think the hardest parts can be a lot of big lashing out, anger, dysregulation. Sometimes instead of externalizing, kids internalize. They might self harm. They may refuse to eat. They may just literally shut down. Kind of more of a freeze response.

It's as if if any of you recognize yourself as a little demand avoidant, you can understand why being in a job setting or being around social other peers can can place a lot of demands on us. But certainly there's gifts. They generally aren't so authentic. Both of my kids have a tremendous sense of humor and really good with words.

So it sometimes has made it hard on the diagnosis aspect because they get idioms, they get, you know, more than one meaning of a word. They're loyal, they're wise beyond their years, and just like any other twice exceptional bright child because they perceive and pick up the adult world in their young experience, there is just such a conflict and it does can can lead to some hard days, some really, you know, this world is too hard to handle kind of feelings. This is the book by Eliza Fricker.

This is I this I have this this was a presentation from Big Mind School. And they are over in East Bay and they definitely understand PDA. I do think there's other settings and I can talk about that a little more, but they really get, you know, how to pick battles, anxiety management, kind of working with the spirit, not against the spirit.

And they can they can see you know you know being if they have to demand something they come at it from an interesting angle. I have to do that at home all the time. I can never and these kids you can never come at it from an authoritarian or authoritative parenting expect. You always have to come in from the side. You have to come with the child to where you want them to go. You have to kind of parent by influence not demands.

And you kind of have to give them time. I you know, if I'm going to tell my kid they have to do something, it's never going to happen that day. It's sometimes going to happen a couple days later. It also depends on how regulated or not regulated they are.

If they are otherwise their anxiety is not treated, their depression is not treated, their mood is not treated, some of this this won't work. You're in a battle and then you need to get other kinds of help in first and then you just are left with a beautiful PDA child that is more regulated and not as heightened.

This is more about demands. Just you recognize how many demands all children experience. You know, put on your shoes, sit here, do this assignment, go to bed. And even us adults don't always like to do those things. And indirect demands are obviously perceived demands that kids put on themselves.

You really I have found over the last my daughter's 17, my only hope of parenting a kid like this is through a relational model. Like I can't be the normal authoritarian authoritative parent. So I have to like I have to know that she's my she's safe with us. We care about her but and we're working with her not against her.

But I think I had another thought there. Sorry. Obviously no shaming it is so hard. I think I've had to do a lot of work on my own anxieties of expectations of my children, especially as they get older. Oh my god, if she doesn't work do doesn't learn how to do homework, she is literally never going to get to college even though she could teach the class. That kind of thinking.

I think they don't get a lot of positives, they get a lot of negatives. So especially indirect positives, not direct positives. A lot of kids don't like compliments, probably because they're so smart, they don't need to be complimented by us.

Here's some general PDA resources. I love Christy Forbes. If you are an adult that recognizes yourself as a little PDA, you might really like her. At Peace Parents is by Casey Erlick. She is she's some a person that a lot of parents that are familiar with the PDA literature, the websites and stuff really like her.

And I think it's really good when you're in a really hard spot when your kid is just in tantrums and raging or completely shut down. It's worth following her advice. But it I say this gently. I think especially as kids get older what I see happening sometimes is that if we if we remove all demands they don't kind of get a you know they don't get a little bit of a a tiny callous to some demands.

So, I think you have to strike this balance between reestablishing peace and then doing little little demands that that are within their realm so they can start to feel capable again. We and and unfortunately for my family, we really did have our kids did had to do some out of home care. My my son actually just got back from a really loving therapeutic boarding school where they kind of got him to relearn that he can do hard things that when he wants to do them. So now we are in a better spot.

But at peace parents is a start when you are really in a really messy situation and or if your kid is quite a bit younger. PDA USA has a lot of good support groups. Ross Green is never going you're never going to go wrong with Ross Green. PDA society is a decent place. It's UK. So if you join those groups, you just have to be aware that UK resources are different and things like that.

And I think this is my Facebook group, Bay Area PDA group. I run that. It is not part of PhD, but there's a lot of crossover. Alex Klein is in the Bay Area. He's a psychologist from Kaiser who really recognizes PDA. Absolutely awesome. Children's Health Council, we've had pretty good luck with them understanding PDA profile. Summit Center has done well with recognizing the autism in a PDA kid. Like I said, sometimes it's hard to get a diagnosis.

But all that said, like therapeutically, what what's been helpful for my family is actually finding therapists, parent coaches, things like that that are really coming from a very trauma-informed relational attachment approach rather than, I don't know, CBT, DBT, those sort of like cognitive behavior therapy approaches that a lot of that is the normal go-to for mental health kind of stuff, mental health, autism. And once in a while you can find a person that is a behaviorist, a BCBA that understands PDA, but it's rare and you have to kind of go hunting for it. It's not to say it can never happen, but it's rare. So, I think you can go ahead and stop my slides. I have a lot more in there.