The Autisms

PDA + an AutismThreads Controversy.

I’m in bed. It’s 6:30, just after dinner. David is in Australia and our older girls, Lucy and Edie are backpacking through Costa Rica. 

I’m not really in bed. I came in here to hide. To get some quiet. My eight-year-old Desi follows. She has been in varying states of rage all day. She is mostly the reason I am hiding. She isn’t going to let me. Any hope I had for a few minutes to reset myself, gather my calm, space to regulate my own nervous system, calm down. Re-set.  

Nope. Not going to happen. 

She is mewling like a kitten and jumping on the bed on all fours. She will communicate like this for the better part of the evening. Earlier in the day, I was sitting out in the front yard, taking in the sun, while Desi and her older brother Raffi (12) rode scooters through the neighborhood. The boy she wanted to play with said he would come in “5 minutes” but he never came and she stomped her feet and asked me 100 times to go down to his house and get him and make him come play. 

Did he already get a whiff that she is different? 

This is the fear, of course. 

Turns out, his parents went someplace with him, but he said he would come and then didn’t, and this triggered a sort of madness that she couldn’t right. All day. She threw a hammer at me. Hit me with her little balled up fists. Hissed at the animals. When she is mad, she raises her back up and hisses like she is a cat. She cleared two bookshelves. Threw a broom across the room and leveled the dining room chairs. 

David and I quietly joke with each other that we get new dining room chairs every six months or so. The humor helps. Having this relationship with David helps.

The protocol for this is for us to not give her attention, like redirecting or punishing. Let her do it. Ignore it. Stay close and keep her and everyone safe without it lighting your brain on fire and becoming unregulated yourself. By responding to it, you give it air, give it power, give it more energy to ka-boom. We let her rage safely and then use various non-pressuring, calming techniques, like humor, to get her to regulate. Sometimes it takes less than an hour, sometimes it can last a day. David is quite good with the humor and is able to get her to crack up, despite herself.

Desi eats the same things over and over for months, demands that food be consistently the same - thus, packaged foods like corn dogs are a fave. A change in the brand of teriyaki sauce made teriyaki chicken unmanageable. One taste and she was off that dish for life, except for one of two restaurants she prefers to eat in. After months of obsessing over one food and the perfection of how it has to be prepared - I have prepared up to four different meals for her at a time some days - she will all of a sudden switch to a new food and eat that consistently. 

Clothes are a big deal. She prefers nudity. Hates underwear and the tiniest little scratchy patch or a piece of clothing that rubs her the wrong way, will be banished from her wardrobe immediately. Once our kitten pooped on her sweater. We washed it over and over until it was like new. She was never able wear it again.

The ability to form a habit is intense for Desi, to the point that it gets OCD-like. She had to spit once, and overnight, spitting became something she felt compelled to do many times a day. It happens that fast. 

We started seeing that this child was different around age three. She was an easy-enough, calm baby, but also sleepless, who came to us from foster care at seven months. By three, she was far more explosive and her emotions more off-the-charts dysregulated than the average kid. And we already had some high needs kids, so we knew something was up. That parental instinct: Something is off. You just know. But there could be lots of reasons. Foster care = trauma. She had been in two foster homes and a residential institution for kids (Child Haven) before us. Could it be because she was born severely addicted to heroin? Or that her mother drank all through her pregnancy? (She definitely has the physical markers of Fetal Alcohol Spectrum Disorder.)  Something else?

Then, we found PDA on the internet. Desi checked off just about every box on the list. It was Cinderella slipping her foot into the glass slipper.

Desi has something called PDA (Pathological Demand Avoidance or Persistent Drive for Autonomy, depending on who you speak to). PDA is, at its core, a constant search for things to go your way. To have equity in every situation or relationship, and if you don’t have that autonomy to do what you want or need, the reaction is a breakdown of how much the nervous system can handle it. She can meet some demands, but each demand, each request, each thing she has to do, compounds until she maxes out. She goes right into fight mode. 

Something as simple as: “Go to the bathroom before we get in the car, please.” is a fairly benign parental demand, but one that can ignite her fragile ability to handle the demand and so she cries, feigns a hurt leg or melts down. A strategy called equalizing, which is a way for these kids to seek some kind of equity in the interaction, by derailing it. It can be mystifying for parents to understand why something so small and benign can trigger complete shit shows of behaviors. 

But you learn quickly. 

David and I have learned to frame everything differently: “Hey, long car ride coming up, I’m going to pee, anyone want to join me? Or a funny approach: “I don’t want anyone peeing on me in the car, so let’s all hit the bathroom before we leave.”  Then I sing the “Pee on Me” song to the tune of “Lean on Me.”

For people with PDA there is always a drive to be autonomous and equal and any perceived loss of that can trigger extreme fight, flight, freeze or fawn responses. 

PDA is not its own disorder. Right now, it is considered to be a type of autism. PDA is not even diagnosable in the US, although this is changing. And it is still not in the DSM5. But this has happened before. Disorders such as Retts Syndrome were once under the autism umbrella, considered to be autism for their autism-like symptoms. Ultimately, it was separated from the autism cluster when it became obvious it was its own thing. I suspect this will happen as well with PDA. And I say this because I am not an “autism parent” in this sense. A lot of Desi’s behaviors don’t mirror the things we consider typical autistic characteristics. Desi is bubbly, talkative, social, makes eye contact, holds conversations, doesn’t stim usually, and can make friends easily. She is an avid extrovert.

I wonder how many bubbly dramatic girls don’t know they have autism/PDA.

I remember dropping Desi off at pre-k, a four-year-old in her blue uniform skirt and matching shirt. We walked and talked on the way to school. And then she wouldn't go in. She cried, pushed and sat down on the ground, limp so no one could move her easily. The pre-k teacher was unprepared and not in a frame of mind to lure her in with fun and rainbows. She and a school counselor told me they would handle it. A few minutes later, I found her running back down the street towards our house, the counselor in heels, clacking down the street behind her.

After that we tried different schools, charters that prided themselves on being trauma-informed and accessible for neuro-diverse and developmentally disabled kids, only to have school administrators stand on the sidewalk and helplessly watch me chase my kid around the parking lot as she stole my keys, and locked herself in the car to keep from going inside. 

If someone had taken a video I would post it. I’m sure it is a ridiculously solid watch. LOL.

The basis for all things PDA for Desi is severe anxiety. She obsesses over dying. Wails in fits of hysteria over not wanting to die. Must have someone else in the room at all times. Must have certain spoons to eat with. She doesn’t like David and I being alone in a room together without her. We have had to cut back our date nights to one hour because she can’t handle us being gone for any longer, even with a sitter or her older sisters. We stagger our schedules when we both have to work outside the house. It usually works out.

I had the brakes lock up on a car, last week. I was driving with Desi in it. I fishtailed across four lanes of highway, taking out two trucks. (No one was hurt, thank God.) She hasn’t ridden in a car with me driving since.

Once something has turned bad for her, it falls off the cliff of existence.  Like the dance class she took. Desi picks her skin obsessively and during a bout where she picked her scalp bloody, a concerned dance teacher saw the little scabs and thought it might be lice. She and another teacher searched through her hair. (I had told them about the scabs and asked them not to touch her head)

That experience created a sense of massive nervous system crashing. Desi was never able to go back. 

Ironically, the dance teacher has an autistic son.

Autism is, according to Andrew Solomon in his book: Far From The Tree: Parents Children and the Search for Identity - a book I love so much and someday want to read and discuss with other people in an extended virtual book club, like 12 chapters over 12 months, because it is that good (someday) - a syndrome not an illness. 

It’s a pervasive disorder because it impacts nearly all aspects of behavior; social function, motor function, sensory experiences and physical and unconscious understandings of our own bodies and minds. We do not yet understand how it operates or why. Researchers know it’s a lack of connections between certain hemispheres of the brain while other connections are hyper-linked and cause all kinds of chaos, like an intolerance for loud noises or different kinds of touch. It’s very connected to genetics, but environmental factors also play a role. 

The autism community is intense and staunchly activist. And like all kinds of advocacy groups - thinking of adoption groups here because I am in that world often enough - there is massive infighting, hostility, and loud advocacy And a lot of trauma, hurt and bad experiences get played out in public discourse.

This popped up again when recently on Threads (I lurk there sometimes, mostly BookThreads) a fight broke out over a mom in Australia who said in a post about her son: "If I knew he was autistic I would've never had him." 

This prompted a cavalcade of responses from people with varying degrees of autism, and parents and caregivers of autistic kids. Some people came out in support of caregivers and parents and their mammoth tasks in raising kids with autism. How easy it is to go to the dark place when it gets bad. Some talked about the need for places to vent and receive support. Some autistic adults came at parents for emphasizing caregiving and parenting over the experience go the child. About using their parenting struggles as content. They told stories of family members abandoning them, hurting them, neglecting and abusing them. Others lambasted the mom for wishing her child didn’t exist, saying this is entirely different from wishing the raising was easier and there were more supports in place. Some people were appalled that anyone could wish their child dead.

And many referenced the highly-publicized murders of autistic children that happen on the regular.

• The mom in Florida who lead her son into a canal and drowned him (2020).

• The mom in Texas who strangled her two--year-old daughter and five-year-old son because they were autistic (2010).

• The 6-year-old boy whose mother threw him off a bridge in Oregon (2014).

• The mom who tried to poison her fourteen-year-old, and when that didn’t work, stabbed him in the chest multiple times and slit his wrists. (2017)

• A mom and blogger who tried to kill her autistic daughter and herself by lighting a charcoal grill in their van. (2017)

The list is long. And sad. And it illustrates that there is a real problem:

This kind of soul-sucking despair is a real issue for people in parenting and caregiving situations with humans with high needs. And if we get it wrong, there is so much at stake. People need community to speak freely and be aware of their own mental health. They need real supports and respite, day programs, weekend programs, therapies for themselves. Time to fucking get away once in awhile.

People are often isolated and on their own and they are WORN THE FUCK OUT.

When I see Desi I often think of her biological mother. She died when she was 27 from a morphine overdose. Family stories tell me that she was always “different”, argumentative, hard to be around, not cooperative. She screamed at people. She was unruly and out of control. Sometimes violent. She stopped going to school in the 8th grade.

I think about how genetic autism is.

Sometimes I read her mother in Desi’s tantrums and eccentricities. I only knew her in heavy addiction so I can’t be sure. But what if mom was autistic/PDA like her daughter? What if she was un-diagnosed? What if the times she lived in prevented her family from seeing what was going on? If she had PDA how it must’ve gutted her to the core to lose her kids to CPS? To not be able to neutralize that loss? It’s no surprise her drug use spiralled after the kids were taken. What if she tried to help ease her own pain by turning to prescription drugs and alcohol and heroin? What if addiction was a co-morbidity of her autism?

That's how high the stakes are.

One last thought: When our oldest daughter, Lucy was little, long before she was diagnosed with bipolar, there was a day when I was really burnt out parenting her.

“I don’t know who she is anymore,” I said to David, frustrated and frazzled.

He got upset with me.

“Of course you know who she is,” he said sternly.

“And when she is giving you the hardest time, that is when you have to love her the most.”

Stopped me cold.

Then, he took care of me, filled me up so I could get back to it. I have never forgotten it: The harder they are, the more love you have to pour into them. You have to choose to love more. Somehow that makes it easier to keep going.

_______________________

END NOTES:

We are super lucky to live in this time of the internet where I can turn to people like Dr. Casey Ehrlich PhD, @atpeaceparents on Reels, who has kept us curious and searching for better ways to be a family with PDA.

And check out these books for parenting solutions that rocked our world:

• Changeable: How Collaborative Problem Solving Changes Lives at Home, at School, and at Work by J. Stuart Ablon

• The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross Greene

• Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them by Ross Greene

And, of course: Far From The Tree: Parents Children and the Search for Identity by Andrew Solomon.

Thank you, as always, for reading. xo Kim