terrible autism mom anecdotes in the washington post

The Washington Post published Autism Mom stories last week and this week. Obviously I had problems with them, or I wouldn’t be writing this.

The first announces directly that it’s going to be a horror story: Bystanders were horrified. But my son has autism, and I was desperate.

What I did to help my 5-year-old autistic son overcome his intense fear of indoor spaces might not have been right or even safe. Doctors didn’t recommend it. The people who witnessed it were appalled, understandably. I don’t suggest this for others.

I could have been more patient with conventional methods, but I wasn’t. I am not certified in restraining children, though doctors say anyone attempting what I did should be. They would also recommend a much slower approach.

I am writing this because I hope to educate people about the burden families face when their autistic children have tantrums in public spaces, so next time you witness such a struggle you don’t immediately resort to blaming the parents. I’m also reaching out to fellow parents in pain to remind them to cast off shame, because I believe nothing is more important than getting your autistic children out into the world.

I learned to tie my shoes, swim, ride a bike later than other kids, but I eventually took up flatland BMX as a side hobby. My mom forced me to do swim lessons, and it sucked. I was freezing the whole time and afraid of the deep end, so I kept failing the test at the end of the class and having to repeat it. Or I wouldn’t want to just jump into the pool rather than slowly getting used to the temperature shock.

I think that was around second grade. Around 5th, I got tired of not being able to join my friends in the deep end, got my shit together, and jumped off the 3 meter board before coming home and explaining it nonchalantly to my stunned mom. It was soooo important that I learn how to swim. I learned the minute I really wanted to, because I wanted to do flips off the diving board.

“I believe nothing is more important than getting autistic children out into the world.” I believe it’s needlessly stressful for everyone involved to push some agenda your kid isn’t ready for, on an arbitrary timetable. Believe it or not, being autistic means it can suck being out in the world, and it’s nice to be alone at home. I visit friends and have them over. I attempt romantic relationships. I’ve lived with roommates. I can do it, but there has to be recovery time.

Why is she in such a hurry? It’s possible I was “out in the world” more than a lot of 5 year-olds because I could, like, play in the yard without much supervision. I accompanied my mom on errands. How much “out in the world” do you need at age 5? She should meet her kid where he’s at.

Learning to do scary shit doesn’t have to be a horrible nightmare of people pressuring you so much you’re doomed to fail. That’s the worst way to learn things. An excellent way for children to learn to overcome fears is skateboarding. Once someone sees the magic in skateboarding and wants to learn it, they’ll try. They’ll naturally strike a balance between whimsy, specific trick goals, fear, and ability. As you practice and internalize the movements, you’ll naturally add little challenges. Can you manual for 1 parking space width? For 2? 3? Can you jump down 3 stairs? 4? Once you can pop shove-it and half cab, can you fakie bigspin?

You learn that your body’s performance is variable from day-to-day, and you calibrate what you’re attempting to what feels reasonable and solid that day.

Or you can think of it like this:

It was a desperate time. Nothing else had worked for Zack — flashcards, photos, play therapy. gradual exposure to feared indoor spaces. That is how, very much against his will, I ended up physically dragging Zack into Verizon Center (now Capital One Arena) one day 10 years ago to see his favorite character, Elmo, perform as part of a “Sesame Street Live!” show.

There is nothing anyone could have said that would have convinced me my son was anything other than precious and worthy of the extreme measures I intended to take to save him from a life entrapped by autistic phobias.

My mind-set that day: If I can get him through this without either of us getting physically hurt, his fear of this place will be behind him for good. He will reset his association with this arena, and it will no longer be frightening. I believe this deeply, but getting him over the hurdle is terrifying.

Flashcards and play therapy didn’t work for what? Were they intended to address the same problem? What’s the criterion for success?

He’s 5 years old at the time of the anecdote. When she’s talking about “a life entrapped by autistic phobias”, it concerns me that she doesn’t mention sensory issues at all. They can be a major reason for avoiding things, based on the avoidance of intense physical discomfort rather than irrational bogeymen. More exposure doesn’t make it better. It just keeps building until Bad Things start to happen.

Being autistic, I find public speaking, or speaking with a well-defined teaching or corporate role, much easier than “casual conversation.” At my job, there are normal people terrified of the phone. Department policy is based on accommodating the normal people’s fear of facing the customers. They’re crippled by a lifetime of neurotypical phobias. Can’t they just Aspie ramble like people who think right?

We enter Verizon Center, and the moment the exterior door closes behind us, Zack reels back and plunges toward it, trying frantically to get back outside. At 50 pounds, his furious strength is a troubling match for mine. He is a thoroughbred of resistance.

My usually buoyant child is slamming his fists and clawing at the metal door’s push bar. I quickly seize him by the shoulders and pry his fingers from the bar as he jerks his head back in a sudden motion. His skull smashes into my chin, and I taste the metallic taint of my own blood.

I give up trying to pry his fingers away, wrap both arms tightly around his torso and yank him back fiercely. We both tumble to the floor. Zack momentarily escapes my grip and scrambles back toward the door, but I leap on top of him, pinning his entire body flat to the ground. We are still in the vestibule.

This was a mistake, too ambitious, I think to myself. Everything is happening too quickly.

Breathlessly, I pivot myself to secure Zack’s entire body between my thighs as I clamp down tightly and interlock my feet to prevent him from breaking free. Zack is shrieking at an alarmingly high pitch, but I keep heaving and dragging us both, inch by dreadful inch, closer to the show’s main entrance area, which we are separated from by a red curtain. I can hear voices around us.

“Hey, lady! Your kid obviously doesn’t want to go to the show!”

An icy shock sprints down my back, and I reflexively arch and look around wildly. Someone has just thrown their soda at me.

No, I’m not giving up.

Suddenly, I feel an imaginary cloak descend and slowly envelop me. These are the moments I’ve been dreading, but also building toward, and I don this invisible armor, now impervious to ridicule because I don’t care what anyone thinks. My singular focus is getting Zack where he needs to be: inside the main area, looking at Elmo. The show has already begun inside, and I know Elmo is on the stage.

Fuck yeah, the person who threw their soda at her! My faith in humanity is restored!

Being super stressed out can make me not want to go out and be places and do things. Sometimes I won’t bother doing things because I’m not up to the bother of driving. I’ll willingly fall down as part of skateboarding, but I definitely think getting publicly tackled and restrained is enough of a buzzkill that I’d just want to go home and get high and pass out.

Okay, get in his head now, talk back to his thoughts. Keep it simple.

“Zack, you are doing it! I know you’re afraid, but all you have to do is stay here, you’re already doing it, you’ve already won. Just stay and watch, sit and watch, that’s it. You did it. You’re doing it. You did it!” A simple and repetitive mantra to penetrate the panic and break through the force field.

In a now recovered and controlled voice, I loudly announce, “My son has autism and he’s terrified. I’m working with him to get his fears under control.”

A manager strides toward us, summoned to calm the explosive scene.

“Miss, I’m afraid this is too disruptive to the other patrons to let this continue, you’ll have to leave.” No response. Repeat with emphasis. “Miss, you are creating a public disturbance, and I need to escort you and your child out of the auditorium right now.”

“No,” I respond calmly without looking up. “I’m not going anywhere. I’m a paying customer too, and I have a right to be here, and so does my autistic son.”

Suddenly, from the far reaches of my mind, the legal jargon jettisons to the surface. What was that ADA language about the right of disabled people to access public facilities? That they have a right not be discriminated against because of their disability, a right to reasonable accommodations to access public venues. My son is not legally required to enter the auditorium quietly. He’s allowed to enter on his own disabled terms. I am his reasonable accommodation.

What a horrible, entitled nightmare of a woman. Ironically, she’s epitomizing one of the things that sucks about autism: normal people being loud and not caring how it affects other people. In daily life, all kinds of things are significant sources of aggravation: exhaust, leaf blowers, people who modify their cars to be louder, the neighbor’s music, the neighbors talking in bed at 2 AM. Everything is so loud and there’s no escape. It’s invasive, displacing whatever I want to be feeling and thinking about.

“LADY, he’s got AUTISM, please just pull back the curtain!” I hiss.

She wordlessly pulls back the plush red velvet in a single swoop to reveal a bright-red, singing caricature on a large stage, clearly visible even from our long distance. I quickly point Zack in his direction and exclaim, “There’s ELMO! Elmo is singing! Look, Zack, it’s Elmo!”

Zack’s eyes catch hold of Elmo, and suddenly he’s too stunned to scream or speak, his hysteria abruptly interrupted by the sight of a familiar friend. Transfixed by the furry creature, Zack sits still and stares intently.

I quickly move to slide him further along the floor, closer to the cushioned seats. The rigidness in Zack’s body gives way as he relaxes, a literal crossover to the other side.

Zack is as smooth and malleable as liquid as he sits upright, almost unaware of his own physical existence and wholly locked in on Elmo. I calmly walk him to his seat. The past and future are of no consequence; for him, there is only the present.

As I gaze around the auditorium, Zack is indistinguishable from his peers. In these precious moments I can savor the reality that Zack has succeeded in the greatest challenge of his life — overriding his intense phobia of indoor spaces — long enough to access something beloved.

It took 36 minutes and 45 seconds. And, yes, it was worth it.

It wasn’t worth it. She probably could’ve done a lot more to explain the plan and make him want to endure the entrance to the auditorium.

For us, the Elmo success paved the way for outings to other indoor places he feared — Disney World, movie theaters, airplanes, the Baltimore Aquarium. Each exposure required less time for him to acclimate. We found that while Zack was initially confused and frightened, he always adjusted. Over time, he became less fearful of all indoor places. He also gained self-esteem once he realized he was conquering his fears and accessing more of the world. And in possibly his biggest win, his overall demeanor became as calm and predictable as his perception of life itself.

It still wasn’t worth it. I’ve been to Disney Land once, and I don’t feel the need to go back. I go years between trips to the movie theater. I avoid air travel for environmental reasons and because basically everything about the experience sucks. Aquariums are alright, but I’ve actually had more fun at tide pools that aren’t crowded. I like solitude and doing quiet things. I don’t like elaborate group activities. I’m fine just sitting and having a conversation instead of “doing something.”

This woman’s problem is that she doesn’t think it’s okay for us to be autistic and do our thing.

The next week, the Washington Post had an article by an Autism Mom coopting the neurodiversity movement’s talking points: I stopped calling autistic people ‘high-functioning’ because of my son. Here’s why. She doesn’t mean it like this:

It’s just a detail mentioned in passing, but this is important:

James has a talent for voicing thoughts. Once in a doctor’s waiting room he exclaimed, “Mom, that loud TV is making me nervous, and I’m here to get my blood drawn, so I’m already nervous enough.” Several people applauded, and I asked the receptionist to turn off the TV.

Having sensory sensitivities doesn’t mean that we’re experiencing qualitatively different things than other people, necessarily. The reason people applauded is that the noise affects them, too, physiologically, but they’e better at tuning it out. They might want it turned down, too, but they’re too constrained by social norms to say anything.

I hate this damning with faint praise bullshit:

James was born 15 years after I started training to be a clinical psychologist. As he developed from fussy baby to frustrated toddler, it became clear that he could have been referred to me at some point for treatment. Before I quit working to care for James and his sister, I identified autism where it wasn’t obvious. I helped kids and adults succeed in mainstream settings. Having qualified for a diagnosis, their autism was real. But with certain accommodations in place, the label became less relevant. They could fit in almost anywhere.

My patients included a 50-year-old man who was an integral part of his family business, a high school student with plans for college, and children in mainstream preschools getting speech therapy for language delays. At the time the word “autism” felt inadequate; it didn’t convey their potential, or the abilities they had despite their disability.

Actually, “autism” conveys a complex set of differences that makes someone better at some things and worse at others. This passage only makes sense if no good comes of autism, only in spite of it.

With certain accommodations in place, namely leaving us alone about bullshit that has nothing to do with the job, we can work. Amazing!

James’s autism is by no means a tragedy. But his sudden, intense meltdowns create mini-tragedies in our home every day.

The other day, James and his sister Margot needled me for mouthwash. Always happy to encourage good hygiene, while Margot watched I poured them each a swig. Ten-year-old James missed this part.

“Okay, here you go,” I said, handing James the cup.

“I don’t want that,” he whined, pouring it down the sink.

“Man,” I said, “you just wasted that. That costs money, you know.”

“No, it doesn’t!” shouted James. Then he noticed his sister swishing and spitting.

“Gimme some more, then!”

“What?” I said, offended by his tone. That’s when I realized the mouthwash was clear, like the water he thought it was.

As if confusing the brake for the accelerator, James hurtled on. He began beating his wrists on the bathtub’s edge. “I hate myself! I’m going to break my arm! My brain is broken!” As I got between him and the tub, he seized my elbows and pushed. He watched with alarm as I fell backward and sat down hard on the bathtub’s edge. Tears sprang to his eyes.

It’s hard to stay calm when the bedtime routine escalates into a wrestling match. I said, “You don’t push me. Go to your room.” Margot slid out of the bathroom.

“I won’t go to my room. I’ll come out. I’ll push you all I want,” James said, the tears starting to flow, his breath quickening.

It was a misunderstanding. All he had to do was hit the brakes and clear it up: “Oops! I thought it was water!” Instead, he clung to his initial reaction as if it were his only option. In my profession, we called it behavioral rigidity. Some people with autism call it “defense mode.”

“High-functioning my a–,” I muttered after the kids were in bed, my heart still pounding. I hated myself for having used that modifier with my patients.

My parents got a kick out of telling a story where I drank from a glass of water at a restaurant and made a disgusted face. “This is bad Sprite!”

I question her characterization of the meltdowns as “sudden.” Autistic people can have issues with tone of voice. Notice how this person is “yelling”:

Then her reaction is to complain that he’s costing her money. I’m sure he gets the message loud and clear that he’s a tragic burden, which is why it doesn’t take much to remind him, and then he responds with appropriate intensity to getting such a hurtful message from his mother.

Then, perversely, she uses the anecdote to imply that autism is always “low-functioning”. Also, spreading the stereotype that we’re violent and unpredictable isn’t doing her son any favors when he gets older.

A child with an autism diagnosis, no matter how intelligent, charming, or funny, has challenges, and they aren’t mild. According to a recent article in The Economist, Britain’s National Autistic Society survey found that only 12 percent of so-called high-functioning people with autism in that country have full-time employment. As reported in Science, another study found that autistic adults without a learning disability were nine times more likely than control subjects to die by suicide.

These grim statistics are no surprise to me, because they have to do with impulse control rather than overall ability levels. What good is a spot on the honor roll to a child who’ll brandish a butcher knife if you take away his TV time?

“There’s no such thing as mild autism” is a statement I’d agree with, but this passage doesn’t ask WHY. It has less to do with autism and more to do with normal people choosing to mistreat us.

Public understanding of autism, as well as my own, has improved over the past 20 years. It’s neither all ability nor all disability, but it’s always some of each. James could go to college. He could end up with a good job, a long-term relationship, children. But a happy ending won’t come easily. Given his hair-trigger temper, his intensity, his impulsive behavior, he’s more likely than most people to end up in a heap of trouble.

With the publication of the Diagnostic and Statistical Manual of Mental Disorders-5th edition in 2013, professionals made the spectrum concept official. It’s now autism spectrum disorder for everyone who qualifies for a diagnosis. No more modifiers or alternative labels. And that’s as it should be.

Actually, there are modifiers: Levels 1, 2, and 3. Nonverbal vs. hyperlexia is one dimension of autism, but it’s arbitrary to center that in the diagnostic criteria. You could group people by intensity of sensory processing issues. You could group people by motor issues and stimming. The idea of the “autism spectrum” isn’t “yup, they’re all pretty fucked up.” It’s that it’s a more accurate description of autism. There aren’t well-defined subgroups. It’s probably caused by different things in different people, but there’s a group of traits that cluster together in a pattern that’s recognizable as autism.