What I Learned When My Autistic Daughter Refused to Eat

And what it taught me about my eating disorder

There was just so much blood.

The scalp is so vascular that wounds often bleed heavily and look more severe than they are. For a non-medical professional, it can be tough to tell the difference between a minor head injury and a life-threatening one.

The symptom that most concerned me was how every time she sat up, she projectile vomited. The retching was immediate and involuntary and I read terror in her eyes as the convulsions rocked her little, empty body trying to right itself.

The throwing up was indicative that her intracranial pressure was increasing, which can signal the possibility of a skull fracture or a brain bleed, both of which could be deadly.

But her vomiting wasn’t the primary concern for the Emergency Room nurse. As my 9-year-old autistic daughter, Charly, sat in my lap bleeding from her head, flapping her hands and moaning into her vomit bowl, the nurse peppered me with questions about the last time she ate and how much water she drank that day.

“I don’t remember. Probably not a lot.”

“I can see that. It doesn’t look like she has anything at all in her stomach. That bile is not normal.”

“Well, this is her 6th or 7th vomit. Can we please get her back to laying down?”

“How did you say she hit her head?”

“She slipped and fell at that damn splash pad on Main. The one with the concrete.”

“But how did she fall?”

“I don’t know. I wasn’t there.”

“Mmm-hmm…”

Yes, she has autism.
Yes, she has a history of seizures.
Yes, I know she’s underweight.
Yes, I know she’s extremely underweight.

“Can you give her something for nausea please?”

“Do you remember how this happened, honey?”

“She wants to sleep and I read that’s not a good sign. Is that okay? Is she okay?”

“Sweetie? Are you hungry? Do you want some food?”

“She has autism and is scared and in pain. She’s not going to talk to you.”

Exasperated, I scooped Char into my lap so that she could lay horizontally. She felt so tiny and avian — like a bird with its hollow bones.

The nurse finished triage and, as I carried her to the room, other patients in the ER, who intended just to glance at us, stared. I kept walking, undeterred, with my little bird in my arms.

I was used to people gawking at her 4 feet, 10 inches of skinny on a regular basis. This particular iteration of Char looked more concerning than usual. Laying limp in my arms, her sticky hair painted red streaks on my white t-shirt. Her limbs hung loose as her eyes struggled to stay open.

She was a beautiful child, like a lot of autistic kids. Their wide-eyed innocence seems to last longer than with neurotypical kids. They’re like little angels.

There were a lot of reasons to stare. And I was ready for all those eyes.

I carefully lowered her onto the gurney and tucked her in as nurses pulled the ER curtain closed. The tension in her body released as I covered her with two warm blankets the staff brought in without me asking.

Charly was always cold.

What I wasn’t ready for was overhearing the whispered conversation between nurses just outside the curtain. And as I softly rubbed her forehead and sang her favorite song, “Twinkle, Twinkle Little Star”, I could make out little snippets of the conversation:

“……. not even 60lbs

….. How old is she?

………………….. neglect

…. call

……… she says she doesn’t know

…….. have my doubts

…..”

Anger is an infrequent emotion for me and, yet, my proverbial blood was beginning to boil. My sense of urgency and resultant irritation was being quickly supplanted by actual hostility.

I told that fucking woman she has autism and sensory issues.
I told her that she struggles to eat.
I told her she has had swallow studies to make sure there is no physiological issue.
I fucking told her.

We’re not here for her weight, asshole. We’re here for the goddamn gash on her head.

“…like a diamond in the sky…”

“…CPS…”

My stomach dropped. Child Protective Services.

Holy shit.

Were they going to take my baby away?

I kept her on a bottle until she was just past 6 years old. It was the only way to get an acceptable amount of nutrition in her. I made sure she drank four eight-ounce bottles every day, each consisting of half part whole milk and half part Boost Kids Essentials — a calorie-dense supplement designed for kids who need to maintain or gain weight. That regimen kept her from dipping into the nutritional danger zone. She refused to drink the mixture from a cup so the bottle had to do.

I didn’t give two shits about the side-eye we got when people saw an almost seven-year-old drinking a bottle while eating out with her family. I’d give them a “fuck all the way off” look and carry on.

After spending essentially the first two years of her life — when her autistic symptoms were most severe — homebound out of fear of judgment from other people, I eventually had to surrender all concern for anyone else’s opinion.

It didn’t help that my own plate was barely touched. But any observer would notice that there were three other kids at the table who were healthy, normal weights eating healthy, normal portions. There was obviously something else going on with child number four.

That “something else” was Sensory Processing Disorder (SPD). WebMD does a more succinct job explaining it than I do:

Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.”

It’s common in children with autism and it manifests differently in each individual. We all have sensory sensitivities, but this is more extreme. Some kids can’t stand the feeling of the metal zippers on jeans or clothing tags on their skin. Some kids wear noise-canceling headphones because sounds that go unnoticed by most people are intolerably uncomfortable for them. Some kids wear sunglasses outside, especially in states like Arizona, because the sun is just too damn bright. Some kids develop aversions to certain tastes or smells and avoid trying new foods altogether.

And, on the flip side, some don’t get enough sensory input and seek it out by crashing into things, flapping their hands, or mouthing inappropriate items.

And because autistic kids have social deficits, they simply can’t cope with those kinds of sensory overload.

Charly suffered all of the above.

On top of those more typical manifestations of SPD, she resisted the sensation of swallowing. She was born with extraordinarily low muscle tone and if she didn’t take small enough bites, the food could move slowly down her esophagus and make her feel like she was choking. She was not choking — the food did move. I know because I watched it via X-ray during a barium swallow study that tracked the food in real-time as it traveled from her mouth to her stomach.

Still, the feeling, like so many other sensory experiences, was terrifying to her.

She also didn’t like the feeling of being full. She would say that her belly hurt, curl up on the floor and cry in pain if she ate more than a few bites. And she was chronically constipated and required a nightly dose of laxative. If I didn’t keep her BMs regular and pain-free, she wouldn’t eat at all.

In response to her aversions, her diet was extremely limited and her portions were very small. Her weight really started to go downhill after 6 years old, which is when we began seeing her doctor for weight-ins every couple of months.

The weight drop was my fault.

I made a choice informed by an interim Occupational Therapist who didn’t know Char at all, after the one she had been seeing weekly for five years retired. I agreed to wean Char off her bottle as she started first grade. The therapist’s theory was that if I only offered her nutrition drink in a cup, she’d eventually have no choice but to drink it. Given Char’s history, I should’ve known better. We played this game before — but I also wanted her to progress. She couldn’t drink from a bottle forever.

And maybe some of the disapproving glances were getting to me.

But instead of adapting to the cup, Char stopped drinking the nutrition mixture altogether. And after two weeks of failed attempts to transition to the cup and watching her weight start to tick down, I tried to cut our losses and offer her the bottle again.

She refused that, too.

I am not a religious woman, but as I waited for the results of Char’s CAT scan, I prayed — hard — to any God who would listen.

As I sat at her bedside, I prayed both that Charly’s brain was okay and that no one tried to take her away from me.

Of course, I was terrified that Charly had sustained a skull fracture or a brain bleed and, walking into the ER with her head leaving a trail of red polka-dots on the lemon-scented linoleum, I didn’t think things could get much scarier.

But they had. Now I was confronted with the specter of being declared an unfit mother and some faceless bureaucratic entity removing my little bird from my care.

My brain raced through the “What-ifs”, trying to be ready for any possible scenario. Do I charge out there and yell at the nurses that they’re wrong? Do I stay calm and comply with whatever they say in the hopes that my reasonable demeanor will attest to my fitness as a mother? What exactly happens when they take your kid away? How will it go down? She won’t understand…oh God, oh God, please don’t let this happen.

I wiped my tears as the nurse reentered to wake Charly up and offer her food and more nausea medication. She acted as if I wasn’t in the room. I didn’t want the nurse to rouse Char, knowing how uncomfortable and exhausted she was, but I quickly pulled back my interjection, aware that it was important she see for herself both Charly’s communication deficits and her refusal of food.

The doctor joined us shortly thereafter. Within a minute or two of interacting with Charly and asking me pointed questions about her autism, I saw him almost imperceptibly shake his head at the remaining nurse, who turned on her heels and left the room.

I involuntarily gasped from relief.

The doctor explained the results of her CAT scan, declaring her free of a skull fracture or a brain bleed. She did, however, have a pretty nasty concussion. They’d have to clean up and close the wound on her head and he educated me on what to expect over the next few weeks: headaches, confusion, brain fog.

Only after that conversation was out of the way did he ask about her eating. He straight up said, “The nurses were concerned that Charly might be suffering neglect, given how thin she is. I don’t think that’s the case at all. You’re clearly on top of this and she’s doing great. She’s lucky to have you.”

Turns out he had a nephew with autism and SPD. Sometimes I wonder what would’ve happened if he didn’t.

The hospital did not take my Charly away. The nurses were ready to make the call, and their contempt for me was palpable. They saw an emaciated child with wet hair and a bloody scalp, being called by a different name than on her insurance card by an anxious, defensive mother. (“Charly” is a nickname she has had since birth.) Was she like the kids they read about in the news who were locked in basements or forced to eat nothing but toothpaste? Was she being abused? Neglected? Did this beautiful, angelic child need someone to save her?

In retrospect, I don’t begrudge their concern. Quite the opposite. I’m appreciative. They didn’t know me from Eve and I’m grateful they were looking out for a child they suspected might be in danger. It’s what we all should have done. My anger in that moment wasn’t because they did anything wrong — it was defensiveness about her weight.

Which was, in reality, part defensiveness about my weight.

Once we were home and Charly was comfortable and asleep on the couch, my emotions stabilized and I looked critically at the uncharacteristic anger I felt at those nurses. That was the first time the possibility occurred to me that I may have been projecting my own issues with eating and weight onto my emaciated daughter.

I got mad at those nurses, exactly like I did when someone would tell me to “eat a sandwich.”

And I started wondering just how much of an impact my relationship with food may have had on her relationship with food.

“AJ, you have to eat something.”

Why, Mom? You don’t eat anything.

“You’re going to sit here until you finish this plate.”

Bullshit. I don’t have to eat anything I don’t want to. I don’t have to wait out my plate…I just have to wait until after the nightly news when your shows start. There’s nothing worth missing your shows — not even me.

“You can sit there in silence all you want, but you still have to eat.”

My mom’s first reaction to my budding anorexia at 15 was force-feeding. She thought she would make me eat. Except you can’t make a person who is nearly a foot taller and way stronger than you do pretty much anything. It was a futile power struggle and not eating wasn’t about the food, anyway.

It was about having finally found the approval and acceptance I never found in my home. When I was skinny and pretty, people outside that front door were nice to me.

They laughed at my jokes and complimented me. I got invited places that allowed me to spend more time out of my house. More importantly, they weren’t mean anymore. Staying thin removed a proverbial target from my back that I spent the first decade of my life walking around with, both inside and outside of my home. She didn’t get to take that away from me, especially when she wasn’t offering any iteration of approval and acceptance in return.

So, fuck you very much, I’m not eating this shit.

Anger was the prevailing emotion at that time in my life.

And my anorexia became my constant companion for the next two decades.

I was 38 and Charly was 10 when I started my second attempt at eating disorder recovery. 23 years in, I finally started doing the work of changing my brain. I wish I could say the impetus was my kids, but that would be a lie. I was too deep in my own mental illness to be aware that my eating habits might be affecting my four daughters.

My epiphany came when I lost a man I was dating who discovered I had been hiding my anorexia from him for the previous year. I wanted him back so I entered recovery and it was through that process that I started to understand the effect my relationship with food might be having on my kids — just like my mother’s affected me.

That revelation was life-changing. There had been so much denial and defensiveness up to that point that I wasn’t able to see through the fog.

The shame and regret were almost too much to bear. Those kids were everything to me and I had been hurting them all this time.

With a budding awareness of my behaviors, I kept trying to help Char. I kept offering her new foods and she kept rejecting them. I tried sneaking her bottle into her mouth while she was sleeping, but she turned her head and spit out any drops that hit her tongue. I read articles about how to get underweight kids to eat and recoiled at a lot of the advice. I knew that pressuring her or demanding that she eat simply would not work. It might make her worse.

Plus, I knew that pressure and I hated it.

But the one thing I wasn’t able to do yet was model a positive relationship with food. I avoided food, just like Charly. I did not enjoy eating, just like Charly. I did not have positive associations to share with her. I was not capable of helping her change in this regard.

I was only starting to realize how important that was.

When you see someone every day, gradual changes aren’t as dramatic as when you only see them intermittently and it’s hard to admit that I don’t remember her looking as skinny in person as when I look at old pictures now.

Char was 10 years old when her pediatrician, who had been her doctor for the previous 8 years and whose practice specialized in treating Special Needs kids, sat me down for a talk. With Char installed in the waiting room with her big sister, Dr. L told me that with that day’s weigh-in, Char’s trajectory had changed from concerning to dangerous.

The quote I’ll never forget was, “She is one stomach bug away from hospitalization.”

Charly had already stopped growing. She was still 60lbs and 4'10"…essentially unchanged from two years before. Dr. L. explained that Charly’s heart wouldn’t be able to take much more weight loss.

She asked me to consider surgically inserting a G-tube, which would allow us to put nutrition directly into her stomach, bypassing her upper GI tract, the premise being that Char wouldn’t have to worry about the sensory experience of tasting, chewing, and swallowing and we could manually increase her weight without her having to eat. Dr. L said that there were several feeding therapists on staff at the local Children’s hospital and that inserting the g-tube would buy Charly time to overcome her sensitivity to swallowing and taste aversions.

This time I balked. It would never work. I knew Char. I knew her anxiety and fears. A G-tube would traumatize the shit out of her. And if I let her stop eating, she would never start again. It was a one-way road to a medicalized life. I didn’t think it would heal her. I knew it would hurt her.

How could it have come to this? How could I be such a failure as a mother that my kid was wasting away right before my eyes and I was powerless to do anything about it?

My anger welled up again because this was un-fucking-acceptable. Except for this time, the anger was directed at the right person: Me.

So I went against medical advice and told the doctor for whom I had the utmost respect, “No.”

“Well, you have to do something.”

“What about feeding therapy without the g-tube?”

“It’s nearly impossible to find one outside of the hospital and, even if you do, it takes months to begin seeing progress. We have to do something about Char right now.”

I told her that “Impossible” didn’t work for me and that I would start looking for a therapist that same day.

In was in that moment that it dawned on me that maybe Charly could learn to eat if she had someone else to teach her. And I couldn’t teach her.

I didn’t know how.

Charly had been in various therapies since she was six months old. Symptoms of her autism showed up immediately and dramatically around just 10 weeks old, and I credit intensive therapeutic interventions with her incredible progress. She is not the same child she would be had she not received four hours per week of Occupational, Physical, Speech, and Developmental Therapy, plus 30 hours per week of Applied Behavioral Analysis (ABA) Therapy, for the first six years of her life.

I don’t know why it never occurred to me that therapy for eating could help her but, in my defense, I kind of blocked out that such a thing existed.

But I did what I promised Dr. L. I admitted my ineptitude and started looking for a therapist. I searched relentlessly — hours and hours of phone calls to agency after agency — until I found an Occupational Therapist who was trained in feeding therapy and I took the only slot she had open — 5 pm on Thursdays. With rush hour traffic, the round trip drive took over 2 hours for just 50 minutes of therapy, but Char and I attended faithfully every week thereafter.

One thing I learned from both Charly’s emaciation and my own eating disorder is that our relationship with food is about how food makes us feel. Charly’s SPD created negative feelings that caused an adversarial relationship with food, just like my anorexia did for me. To get her to eat, we had to change negative feelings into positive ones. She had to learn coping skills that reframed her unpleasant experience as pleasant.

Charly and my feelings did not come from the same source, but they affected us similarly. I didn’t like the feeling of swallowing either. I didn’t like the feeling of being full, either. I got anxious during mealtime, too. And pretending that my own negative emotions didn’t affect her emotions about food was willfully ignorant.

Charly’s therapist rewarded her with flavors she already liked when she dared to try new ones. She created fun games that involved experimenting with textures and desensitized her to previously off-putting sensations. Meanwhile, in eating disorder recovery, I was learning that “healthy = beautiful” and that my adversarial relationship with food was costing me the communal experience of enjoying a meal with people I love. Char and I were both learning to reframe our experiences and change the stories we told ourselves about food.

The therapist also taught Charly cognitive reframing strategies and she learned affirmations to recite when she was struggling. They included validation of Char’s current feelings and recitation of what we wanted to change her feelings into.

“This isn’t my favorite and that’s okay. Eating this will make me healthy and strong.”

“This is a little chewy and that’s alright. I can always take smaller bites and take my time chewing.”

Most importantly, the therapist always let Charly spit food out if she felt she couldn’t handle it. I still allow her that freedom to this day. There are rules, of course. Charly has to excuse herself from the table, discreetly spit the food into a napkin and throw the napkin away….but she is allowed to reject sensations that don’t work for her.

Giving her that control has done wonders for her fears and her ability to try new things, and allowed her to eat greater quantities. And I understood how liberating that was. During that time, I reconciled with the man I had been dating at the peak of my anorexia. In support of my recovery, he never attempted to coerce or persuade or force me to eat anything I didn’t want to. He had his own traumatic experiences with power struggles between his neuro-ayptical sister and mother at the dinner table and had no desire to reenact them with someone he loved.

If we went on a date and I ordered food that went untouched, it was not a problem. The freedom of refusal — without judgment — was the most dramatic step in changing my relationship with food. It was one of the first positive feelings I associated with meals since I was 15. The ability to say, “No”, without fear of criticism or letting someone down, is incredibly empowering and releases a lot of fear.

Charly relates.

At first, when we instituted the spitting rule, she did it all the time. Now she barely ever does it. Knowing she had the option was enough to change that negative feeling into a positive one.

It made her brave enough to try.

There were times I struggled, sitting in the waiting room listening to her therapy sessions. They took place within earshot of the waiting room, down the hall in the kitchen of the therapy facility. I sometimes had impulses to run in there and “save” her, especially in the beginning, when she gagged or cried. In those moments, the extent of my ineptitude was the most salient. Thankfully, her therapist was amazing. Only 3 months into therapy, Charly started to gain noticeable weight.

It’s now two years later. Charly is 12 and her eating habits have improved so much that we are currently taking a break from feeding therapy to see if she can take the skills she has learned and maintain her weight on her own.

She has grown 4 inches, now weighs 80lbs, and her BMI is on the rise. She’s at a 14.2 and needs to get to 16 to be out of the “underweight” range, but progress is progress and her trajectory has changed. That’s a win in my book.

She grew out of her clothes recently for the first time in four years and I was crazy excited to buy her new ones (albeit still tagless and zipper-free.) She remains skinny but she is no longer living under the threat of hospitalization for malnutrition.

She is growing, dare I say thriving and, for the first time since she was five years old, she is above the 1st percentile for BMI for age. That means that statistically-speaking, there’s at least one kid out of 100 her age, that is thinner than she is.

There used to be virtually none.

And I wish I could hug that one kiddo’s mom and offer anything I’ve learned that may be of help.

Even as she gained weight, I knew there were going to be new challenges. Her dentist recommended braces, and the movement required to widen her palate and reposition her permanent teeth was extensive.

Based on the experience of her older sisters, I was afraid that Char’s teeth and jaw would hurt so much that she’d lose her appetite altogether. Not only that, but I wasn’t sure that she could even tolerate the sensory experience of wearing braces at all.

She did tolerate it and she kept eating. The skills she learned in feeding therapy were a tremendous help.

Another test came when Charly got the flu this past winter. After her second round of vomiting, I called her doctor’s emergency line. She reassured me that, barring an unlikely degree of severity, Charly could weather this storm. And she was right. She did temporarily lose a couple of pounds and was absent from school for a week, but she recovered well and resumed her normal healthy eating.

She still prefers softer food choices, like mashed potatoes, and that’s okay. She will drink 8 cups of chocolate milk per day if I let her. Some of her new favorites are roast turkey and grilled chicken and the kid dips her carrots in barbeque sauce which gives me the heebie-jeebies, but more power to her. She will now try almost anything and her portions are twice the size they used to be. She also doesn’t take laxatives and is no longer perpetually constipated.

And — here’s the most awesome part — she enjoys eating. She asks for food. The “Mom, I’m huuuuuunnnnggggrrryyy!!!” I hear from her every day after school is like goddamn music to my ears.

She will always be skinny. She was born with an underlying connective tissue disorder which means her body is tall and waifish, by design. But skinny can be healthy as long as she is putting enough wholesome food into her body.

I know because she got the connective tissue disorder from me and I will always be skinny, too. Even so, I’m now 20lbs heavier, have an almost normal body fat percentage, and have completely changed my relationship with food — and I did it by putting enough wholesome food into my body.

Sometimes Charly still talks to herself — out loud — while she’s eating.

Sitting across the table from me, she’ll say, “Well, I’ve never had this before so I’m just going to just lick it first.”

or

“It’s not my favorite, but it doesn’t have to be my favorite to eat it.”

or

“It’s a little chewy, but I’ll just take small bites and get through it.”

She repeats these affirmations to reassure herself, change the story she tells herself about food, and also as an indirect request for reassurance and validation from me.

And sometimes, it feels like she’s coaching me.

Because it helps me, too. On days when my new positive associations with food falter, I say some of those very things to myself. And they remind me that if my sweet girl can overcome her negative associations with food, so can I. And, more importantly, that her success is dependent on mine, so I’d better keep all my shit in one bag.

Sometimes her statements are questions.

“I’m doing great, huh Mom?”

“I’m gonna be okay, right Mom?”

“Yes, baby. You’re doing great. I’m so proud of you and you’re going to be okay.”

And that’s something I couldn’t have said just two years ago…about either of us.

Thank you for reading. Here are a few other stories I wrote about our journey with autism:

Mama, writer, lover, fighter — I wear my heart on my sleeve because my pants pockets are too small. www.ajkaywriter.com

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