So much advice on PDA centers around young kids, but the principles of low-demand and collaboration are supportive for older PDA relationships as well.

The following is the testimony of an anonymous PDA USA member who is in the process of rebuilding with her adult PDA son:

"I did all the wrong things in raising my 42-year-old son, because he was a child when autism was not diagnosed in smart kids, and he is brilliant. I was told he was ODD and to implement strict rules and schedules, and to use rewards and punishments. And you all know how horrible that advice was.

"He has severe PTSD from his dad's physical abuse, before we were able to escape, and a lot of resentment towards me for the way I parented. So a year ago late spring, I started having symptoms of what was eventually diagnosed as ALS, and he got very angry and accused me of faking the symptoms. When I did get diagnosed, he raged at me so severely that I did not feel safe. Then he cut me off.

"He somehow convinced himself that it was not safe to shower (he lives in his own apartment) because of his own health issues, so he had not showered in over a year. He eventually responded to my overtures, and we have been talking and spending some time together, and today he took a shower at my house, so I could help him if he felt light headed.

"I have been using all the ideas suggested in this group for getting a PDA child to do self care, and it worked. I am so happy that he showered, and have no one to share it with. And then I remembered all of you. Hopefully he will continue to shower here occasionally, but over a year of grime is off his body. And he felt safe."

Thank you, anonymous, for sharing your story with us!

To readers: It's never to late to learn what may help in broken relationships with PDA family. They may or may not offer the opportunity, but as parents, friends, and extended famliy, can do our part and try to reflect on how to do better should we be given the chance.

Collaborating with kids who experience Pathological Demand Avoidance (PDA) is one way to help them engage with life in a way that feels safe. Tasks that feel demanding feel less so when PDA kids have a chance to contribute in the process.

An easy misunderstanding around collaboration is that offering choices is sufficient. One of our team Keri Schouten (adult PDA person and parent coach) responded to a parent whose PDA child was rejecting choices she offered him in an effort to be collaborative:

"Offering choices and having them rejected is not a failed accomodation, it’s a failed attempt at collaboration. In a sense, you’re trying to trick them in to agreeing to pre-set solutions dictated by you. This failure happens because PDA’ers tend to realize many choices are false, and reject them outright. (A choice between two things we don’t want to do isn’t really a choice.) False choices are typically answered with a flat "no", like "you can’t manipulate me into choosing between these two things." It’s also not an accommodation if the person doesn’t want it, or doesn’t find it helpful.

"I think it’s helpful to totally move away from "choices" with kids who react with "no" and instead look at each task through the following lenses:

—how can I make this easier for them while *also* reflecting their perspective?

("I know you don’t like picking out your own clothes, so I found your most favorite soft tee and leggings and left it on the bed for you")

("I don’t mind helping you get dressed, here, I’ll hold the pants for you and make it super easy")

("Here’s your toothbrush and a cup of water, in case it’s easier to brush while you’re watching on your iPad")

("Washing your own hair is hard, and annoying. I want it to be effortless for you. Maybe… a spa day where we set up the kitchen counter to be super comfy, and we pretend you are the customer and I am your hair washing servant? With cucumbers on your eyes and everything")

—how can I make it fun?

("I hear the toilet calling "I’m so HUNGRY why hasn’t anyone popped in me yet today? Don’t you know toilets deserve to eat, too? Geez people." "Be quiet toilet, no one has any poop to give you right now. And also why are you talking about poop? It’s so stinky" "poop poop poop I’m going to keep saying it until you feed me" "noooooo")

—how can I create routines that focus on slowing down, on connecting, on fun, on process? This can look a lot of different ways. 

(Having conversations about things that are very interesting to the child instead of talking about teeth brushing while teeth brushing, keeping the focus OFF the transition so it happens kind of in the background of the interesting conversation. ) 

(Having conversations during transitions that give information + "look forward" but focus on good memories. "Playground time is in five minutes. Remember yesterday when you started digging and then we found water to dump, and you turned that hole into a stream? I wonder what it looks like now", like we’re focusing our thoughts on what is at the end of the transition rather than the transition itself)

(Having something to look forward to after the caregiving tasks, like for example when my kids were younger, we would brush teeth and then I’d read to them for a super long time before transitioning to listening to our own audiobooks, me with headphones, while lying in bed together. So teeth brushing did not create direct resistance to "bedtime"— sometimes resistance to tasks is about what comes next, not the task itself. This is especially true before school, for example.)

If we want to be successful with transitions and caregiving tasks, we need to find ways to take the spotlight off of those tasks and shift to more of a meandering vibe that makes life easy, effortless, fun, and also centers around "I see and value your point of view". This can feel a bit like jumping through hoops, because we also can’t do or talk about the exact same boring thing every day, but I think it’s also well worth putting energy into that hoop jumping. 

The foundation upon which collaboration rests is connection and support, along with "I want to find a way to make this work for you in a way that also works for me." If we are focusing on control, which looks more like "how do I get you to do what I want you to do", then it’s likely we’re going to end up frustrated. That’s not a meandering approach, that is always going to be direct and demanding, and rooted in behaviorist principles (like "first, then", or offering two choices). On the surface it seems reasonable, but in reality, simple solutions rarely work for long. It’s better to ask "how can I make it easy for you to do what I want you to do, how can I make it fun, interesting, connected?"

By Brook Madera (No Pressure PDA), CEO of PDA USA and co-author of The Insider Guide to PDA

This blog is not meant to diagnose any condition. If you have concerns that PANS may be impacting your family please reach out to the appropriate medical professionals.

PDA USA moderator Dr. Zee created an informative Youtube video explaining PANS/PANDAS (watch here) and I took it as an opportunity to talk about the significance of this under-recognized medical condition, and how it impacts the work my team and I do within the PDA USA Facebook group.

What is PANS and PANDAS?

As described in Dr. Zee's video, PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome (caused by a broad array of infectious triggers), and PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Both are known for sudden erratic mood swings, OCD and tic-like behaviors with other potential symptoms including skill regression, aggressive behavior/irritability, sleep disruption, attention and concentration struggles, and restrictive eating.

PANS is the larger set of conditions that impacts the basal ganglia of the brain (and flora in the gut) with PANDAS falling under this umbrella, but with it specifically being triggered by Streptococcal infection. 

Since this article is about the broader set of conditions that includes PANDAS, I will reference PANS for both.

I also highly encourage watching Dr. Zee's video to learn more about how these conditions impact the brain!

Overlap with the PDA world

PDA is best understood as a neurotype that has strengths and weaknesse that impact everyday demands and involves mood swings. During "PDA burnout" unsupported PDA people experience even more emotional lability and may have disrupted sleeping, restricted eating, OCD, and/or skills regression.

As awareness of PDA has grown, with it a subset of families has come forward too with the suprising similar symptoms as part of their PANS diagnosis. And if the behavioral similarities weren't enough to confuse this topic, it's our experience that there does seem to be an overlap between the PDA community and children who develop PANS--meaning even after treating their PANS, many of these effected children then show their underlying PDA traits.

This suggests PDA may come with a higher predisposition for developing PANS.

The Risks in Rushing for a Cure

Every so often a family experiences dramatic relief from treating the underlying infection caused by PANS and will share their story. Other families understandably rush to learn more. 

Over time our admin team was pressed to take a cautious position in how and when PANS conversations were had in our groups.

Our concerns were threefold:

First, because of typical societal stressors like traditional parenting methods and public school structures, every family impacted by PDA-like behavior requires a lens shift in how they parent.

A family coming to us in crisis is almost always burned out. Even the distinct "sudden onset" of PANS (as referenced in Dr. Zee's video) is not a guaranteed way to differentiate between neurotype burnout found in PDA and this medical condition with sudden symptoms: We have heard families share that their PANS was atypically NOT sudden onset, and some PDA children "suddenly" show erratic behaviors after masking their anxiety for years.

In our PDA USA podcast on Low-Demand Myths with Cheryl Quimba, we talked about low-demand approaches being similar to pulling a child out of a burning building: once everyone is safe, it's easier to troubleshoot the various sources of heat that created the flames.

Low-demand dramatically reduces the number of relational and environmental stressors so that the smoke can clear and it's easier for families to see. 

Second, even if an underlying medical condition like PANS is at issue, the child may still be PDA, which means the demands of medical testing and treatments can make them difficult to access if not done in the low-demand way that PDA requires.

Families in our groups frequently share that getting their kids to cooperate with medical procedures easily turns into no-win battles and trauma.

That said, PANS can impact supporting PDA. Supports that typically work well for PDA alone are harder when even low-demand is viewed as pressure. The combined diagnoses create a maze that requires understanding both.

One parent shares:

"My older PDA'er with PANS/OCD seems to think 'what if I'm losing my autonomy'. Confirmation bias and other disordered thinking kick in. She will resist the help she needs and interprets most attempts at communication as a loss of autonomy. 

"Low demands don't help this at all. We can even say 'it's up to you'. I can't say much of anything and walk on eggshells."

Third, these conversations sometimes lead to implications that PDA is nothing more than untreated PANS.

Conflating PDA with a treatable medical condition bypasses is problematic for a number of reasons, not the least being that PDA is best supported life-long when viewed as a neurotype that's more than only defiance, refusal, or explosive behavior (my book with Sally Cat The Insider Guide to PDA has a chapter on PDA positives). 

Reducing PDA to stress responses erases the internalized PDA presentation which is NOT explosive, but impacts people just as significantly. It sidesteps the families (mine included) who never tested or treated for PANS and successfully supported their families.

When We Suspect PANS

As a team leading an online support group, we only get snapshots of what families share with us. 

We do suspect more than PDA when:

1. The family has been practicing low demand/homeschooling/public school with a robust IEP for a number of years with minimal improvement.
   
   
2. Other stress factors have been excluded, including unsafe relationships (sometimes one parent will be practicing low demand with the other co-parenting being punitive) or behavior-based therapies like ABA.
   
   
3. The OCD feel dramatically dispurpotionate to stressors. Behavior overall also feels more like longer stretches of peace with abrupt regression (a PANS "flare")
   
   
4. Anti-inflammatories such as ibuprofen temporarily make behavioral symptoms subside (ibuprofen should not be considered treatment for PANS and is dangerous with long-term, off-label use)

In Conclusion

From our limited perspective and training we know we can't definitively say whether any family is experiencing PANS, and we encourage individuals to assess their situation with the appropriate medical professionals.

Our hope, however, is that lived-experience informed discussions like these provide more accurate tools for treatment and support.

Thanks again, Dr. Zee, for your informative video that launched this discussion!

If you'd like to learn more about screening and treatment of PANS:

 Demystifying PANS/PANDAS by Dr. Nancy O'Hara 

https://www.facebook.com/aspirepans

(illustration by Brook Madera/No Pressure PDA)

One of our PDA USA members asked the question, "What hill do you die on when it comes to living low demand?" (Post viewable for existing members here)

Families new to low demand ask variations of this, and since it comes up so frequently (and since one of our admins wrote such a detailed and helpful response) we decided to share it here for future reference:

From admin Keri Schouten (more resources from Keri included at the end):

Hills I will die on:

1. Could it kill or seriously injure you, right this minute?
   
   I will do everything in my power (including using “power over” methods of control, like grabbing and restraining a kid to keep them from running in the street, or locking car keys in a safe to keep them from an inebriated person) to maintain that immediate safety. “Power over” methods would still be a last resort, and I am not punitive in my responses regardless of urgency.
   
   
2. Does it infringe on my right to choose for myself?
   
   If so, I try to stay collaborative, making it work for everyone, but I prioritize autonomy. Including mine. I honor my OWN needs, while avoiding the extremes of fawning or fighting. This takes a lot of work and skill, and it is anything but easy. Examples of this might be like a kid says “you’re not allowed to sit in that chair, you need to sit on the floor” and I will respond “oh do you want this chair? I don’t mind moving, so long as I’m comfortable. Maybe there’s a way we can make the floor more comfortable, hmm” and I don’t move unless my need for comfort and ease continues to be met. So my “line” is “I’m willing to make things work for you, so long as we can also find a way to make it work for me.”
   
   
3. Another “line” I have for myself is to avoid win/lose power dynamics as much as humanly possible, to consistently prioritize the autonomy and consent of others, right along with mine, and to consciously put their perspective first, and ultimately as equal to my own.
   
   I find the best way to make things work for ME is to start with “yes.” “I can see why you want this chair, it’s pretty comfortable. Maybe even your favorite, huh” instead of “you don’t have the right to make me move if I don’t want to move.” While the latter statement is ultimately true, my goal is to be collaborative, not combative, and needs focused rather than control focused. Another example: my five year old yells at me “go get me water!” and I’m likely to say “I don’t mind getting you water, but I don’t like being yelled at. You can say “I’d like some water” instead.” And then without waiting for any kind of response or acknowledgement, I go get the water. Because I really don’t mind. But if they yelled at me again while I was getting the water, I’d likely sit back down without getting it. Because I’m in charge of me, I don’t like being yelled at, and I have no desire to make it an effective way to communicate with me. But I’m also not doing battle over trying to make anyone stop yelling at me, more like “no thanks, I decline being reactive, but I also decline being a doormat”.
   
   
4. I will also do my best to keep myself and others from being hurt, in the least restrictive and least punitive way.
   
   So I might step between two kids and say “hey, tell me instead, talk to me instead”, I will divert to something fun for them, I will stick close and focus on connection, seeking to coregulate prior to anything happening, or take a break with the child. Or without the child, if I’m the one being hit. “I’m not okay with being hit, I’m taking a break, I’ll be back to check on you soon” and trying to find a way to gain space for myself. I consciously prioritize physical safety (everyone’s) over anyone’s potential nervous system disregulation (for example, my child getting more upset because I’m taking a break).
   
   And yes, it can be very messy, and anything but easy. It’s still my priority, hand in hand with long term connection. Now that I think about it, most of the “lines” I have are for myself and my own behavior, my own commitment to being collaborative, respectful, and honoring my own needs along with others. I know that wasn’t what you were asking here, but I believe effective PDA parenting takes a radical kind of mindset shift rooted in “what is mine to control? What is not? How can I let go of what is not while holding on to what is?”
   

Thank you Keri for such a thorough response!

More about Keri:

Keri Schouten is an adult PDA’er herself, the parent to 2 young adult PDA’ers, and has also worked as a teacher and respite provider for young PDA’ers. She’s worked with more than 20 children between the ages of 3 and 9 who fit the PDA profile, and is currently a trainer for PDA North America, focusing on collaborative and PDA friendly communication. Check out this Facebook post to see how to schedule coaching with Keri.

Submission by Jewel Magadan Gonzales

I have a PDA son. I struggle with him still, and he’s 17. 

I believe I was a PDA child. My birth mom gave me away, then my Godmother couldn’t handle me, so ultimately my great-grandmother ended up informally adopting me.

As a child I was called hateful by my aunts and I have to say that I really was an extremely difficult child. Back then in the 80s, people didn’t know about autism, or gentle parenting. I don’t know how my mom (great-grandma) survived raising me, let alone how she was able to parent me with such amazing compassion.

She did, though. And while I had my struggles, I grew up to be a very empathetic individual. I’m working on degree #2 and applying for grad school currently. I run a community health non-profit.

My mom died when I was 29 or 30, but the love she showed me as a child carried me through the hardest times, even after her death.

As a mom of a PDAer, it sometimes feels like my son will never get better, but I remind myself that I made it because my mom raised me with love. She never hit me. She always encouraged me. She told me that it was okay if no one understood me, and told me to continue to trust my own instincts. I wouldn’t be where I am today without all of that unconditional positive regard and support.

 So I just want to encourage you, that when it feels like things are impossible- sometimes you couldn’t possibly imagine the end result by the way things look now, but your love and encouragement matters to your PDA child.

My mom didn’t live long enough to see the fruit of all of her sacrifices, but she did live long enough to see me get to the point where I recognized the sacrifices she made for me.

Keep on going. You’re doing a great job just by being here and doing your best to understand your child.

Jewel's nonprofit will introduce the Rebecca Picazo Hernandez scholarship in her mother's honor

My son has a “tradition” where, after everyone has finished their Thanksgiving dinner, he asks to go get McDonald’s.  This came out of Thanksgiving 2019, when he was in 2nd grade and, apparently, in his class, they talked a lot about the traditional Thanksgiving meal, and he got really excited to eat all the things they had talked about.  He was always a very “picky” eater - likely ARFID, although I didn’t know much about that at the time.  He had never really eaten anything offered for Thanksgiving dinner in the past, so I was pleasantly surprised at his excitement. 

He asked for everything to be put on his plate.  And he dove into his meal. About 5 minutes later, I noticed he was crying silently, and I asked him what was wrong.  And he tearfully told me he had been so excited to eat everything; everyone had told him how good it all was - and he didn’t like any of it.   Then he put his head down on the table and just sobbed.  

Honestly, looking back on that, my heart still breaks for him. I think it was really the first time in his life that he was able to give me some insight into how HARD it is to be him.  I think parents often forget about that - I know I do. He’s always been a very frustrating person - inflexible, oppositional, argumentative…. And I always thought it was just him.  It was just his personality, or that he just wanted to be difficult. That was when I first realized how different his perspective on things truly I was (is). And in that moment, I just wanted to make him feel better, so I suggested we find an open McDonalds and get him a happy meal, and he was so shocked that I had suggested such a thing (maybe I’m a bit inflexible, too!). 

 Of course, we did it once, so we’ll have to do it forever now.  

He’s actually doing a lot better now with eating different foods.  This year he ate turkey, mashed potatoes, gravy.  He even tried some other things that he previously didn’t like, and said they were “okay.”   But he still had to have his McDonald’s afterwards.  And every year it reminds me of that day that he gave me my first little glimpse into his mind and the challenges of being him.  It reminds me each year to pause and remember that underneath all the challenges, that sad little boy who’s struggling is still there, and I want so desperately to help him be less uncomfortable in this world.

- Anonymous Parent

When my son Frankie first conceived of the idea for Kriewaldt Academy, he told me it should be free. “Why should anyone pay for school? That is what we are supposed to be doing: learning.”

His words were not a dream or a throwaway thought. They were a declaration.

Frankie is determined to make education accessible for every child, and I take that vision seriously.

That is why the recent mass layoffs at the Department of Education, 466 staff gone, including those charged with protecting disabled students under IDEA, are more than a policy shift. They are a direct attack on the futures of children like mine and millions of others.

The Individuals with Disabilities Education Act (IDEA) guarantees every child the right to a free appropriate public education.

Free.

Appropriate.

Public.

Education.

Those words are non-negotiable.

They mean that disability cannot be grounds for exclusion. By gutting the Office of Special Education Programs and leaving only a handful of officials in place, this administration has made it clear that enforcement of IDEA is no longer a priority. Hundreds fewer people will now be monitoring to ensure schools follow the law.Families already fighting for their children will be left to fend for themselves.

This is not efficiency. It is abandonment.

I know what it means to fight for a future. My late father, Lt. Col. Dr. Franklin Harold Kriewaldt, left a Wisconsin dairy farm at seventeen with nothing but determination. He hitchhiked to Minneapolis, worked his way through college, became a veterinarian, and served in the U.S. Air Force space program before joining the USDA.

He built a life of service from nothing but grit and vision.

His path carved the way for his children, grandchildren, and great-grandchildren to live better lives. My father paved the way to the stars not just for his children and grandchildren to reach, but for every child to explore every inch of human possibility. His story is proof that access to education is not just personal. It changes the trajectory of families for generations.

When he married my mother, Carole Ann Holmes Kriewaldt, a special education teacher, he found his match in service. My mother modeled inclusion long before it was a word on a policy document. She kept the brown door of her townhome open for all. That brown door was more than an entryway; it was a welcome sign. She gave free lessons to those who could not pay, she adapted her teaching for children who needed accommodations, and she created a space where every child felt loved, accepted, and capable. Walking through that door meant stepping into a place where differences were not deficits—they were recognized, honored, and embraced.

For my mother, music was never only about skill; it was about belonging. The sounds of children learning, stumbling, laughing, and playing filled her home. She made sure that every child who came through her door had the chance to make a joyful noise. That joy, that inclusion, that insistence on creating space for every voice, is a legacy as profound as my father’s work in science and service. The brown door was her declaration: education is for everyone.

Together, my parents embodied what it means to give freely and fight for inclusion. They are buried now at Arlington National Cemetery, honored for their service, remembered for their belief that this nation could and must do better. Their daughter and their grandson carry that work forward. Frankie’s vision of a free and inclusive school is not a dream plucked from the air. It is the continuation of what my parents lived, what I was raised to believe, and what our children still deserve.

The gutting of IDEA enforcement will not erase this legacy. It will not silence families like ours.

My father helped pioneer the space program. His grandson, his namesake, is pioneering a new vision for education rooted in inclusion and science. My mother opened her brown door to everychild. Her daughter is insisting that the doors of education must remain open to all.

Gatekeeping does nothing to increase one’s power. Uplifting others and amplifying their voices is how we build true strength together. Holding anyone back only sabotages ourselves. Education itself is an epistemic game, a continual exchange of knowledge, perspective, and lived experience. None of us has all the answers, but in learning from one another, we refine our understanding of the world and expand what is possible. When education becomes a competition instead of a collaboration, we all lose. When it becomes a dialogue, we all rise.

Our nation must now become a choir of voices, not individuals competing for the high notes. Music teaches us that a single note alone may be beautiful, but it is in harmony that we experience fullness and resonance. A nation that amplifies every voice, that adapts for every need, that refuses to drown out its most vulnerable, is a nation that will endure.

When we match harmonies, we resonate with all of humanity.

Every child has a right to an education, whether born here or not, whether they require assistance or not. That right is not negotiable. If we must build an entirely new Department of Education, funded by the people, then that is what we will do.

We will resist.

We will fight.

And we will win.

The legacy continues.

We will not stand down.

Amy Kriewaldt is CEO of Kriewaldt Academy and COO of PDA USA.

Follow her on Substack

Our first podcast episode has dropped!

In it we talk about...

- how Amy and Brook got to know each other- what our plans are for families, training for professionals - scholarships for families to access PDA-specific resources - maybe RETREATS are in our future Available on most podcast platforms!