School Refusal and Autistic Teens

Like most parents, we were profoundly relieved when the kids finally went back to school after a year of distance learning. I was looking forward to having the time and space to get caught up on my own workload without having to constantly police the kids’ school habits, lend essay support, and relearn algebra. Arthur opted to stay in virtual school since he was generally keeping up with the seventh grade and wanted to wait until fall to start at his new middle school, but Noah and Lucy would be returning to the classroom. 

At first, everything seemed to be going about as well as could be expected for kids that have been learning on a loose schedule in their pajama pants surrounded by cats for a year. Everyone was generally, if grumpily, managing to get out the door on time. But as the days went by, Noah, who is 13 and autistic, started to drag through the mornings, getting slower and slower.

We tried to set an expectation that as a teenager, he would set his own alarm and wake up on his own, but it simply did not work. We would wake him up at 6:45 a.m., and then continue to prod him for approximately 1.5 hours. Noah would start off the day moving like a video set at 25% speed, sometimes sitting on his closet floor with the door closed in silence, often crawling back under the blanket once we managed to get him out of bed. And to say the interactions were unpleasant would be a strong euphemism. 

We tried everything from positive reinforcement to, eventually, removing privileges, but things only got worse.

Eventually, he stopped trying altogether, instead just remaining under his blanket. If we tried to touch him or enter his space, he would yell or even shove us. Nonetheless, by the time school was out and he came home at the end of the day, he would be back to his old self, cheerful as ever, almost oblivious to the harrowing events of that morning. 

Without going too deep into specifics, we connected with his counselor and bus driver and spoke to him at length about school, ruling out issues like bullying and academic trouble. Nonetheless, his resistance only worsened, and eventually, there was yelling and a flat-out refusal to even move out of bed, no real reason given.

It all started to feel very familiar—our friendly, bright son replaced with a distant, closed-off person we couldn’t reach with any amount of effort—much like when he was younger and having elopement and meltdown issues in school. I turned to a parenting support group for families of children with autism spectrum disorder, but the other parents seemed to be grasping as much as we were. Suggestions ranged from the unhelpful “Let him experience natural consequences” or “Maybe he’s just a rebellious teen” to the well-meaning but not applicable “Could he be depressed?” and “He will have to get up every day for work someday.”

Things started spiraling out of control quickly as this morning nightmare began carving an hour out of my workday, after which I would find myself struggling with fairly strong anxiety that made the next few work hours difficult and less productive. And then like clockwork, in comes Totally Chill Noah™ at 5:40 p.m., cheerful from his school day and oblivious to the chaos the morning has wrought. 

In Noah’s younger years, he had a handful of teachers and counselors who were insistent that his behavior was “separate from autism” and “just acting out.” I understand that some parents tend to make excuses for their children, but I also know that when my kind and engaging son can’t be reached, there is something in his world as a neurodiverse person that isn’t clicking into place the way he needs it to, and it’s hurting him as much as it is frustrating everyone else.

My instincts were telling me that this wasn’t rebellion. This was pain.

In desperation, I turned to the least judgmental person I know, Google: “My autistic teen refuses to go to school or get out of bed.”

And just like that, there it was. Article after article like these:

Regular Rebellious Behavior vs. School Refusal in a Teen with Autism

School Refusal: Autistic Children and Teenagers

Why Some Autistic Children Refuse School

There it was, and it had a name: School Refusal. I was reassured in knowing that this is something others have experienced. That means, of course, that somewhere out there, someone most likely has some information that can help us. 

Autistic Teen Challenges

As Noah grew out of some of the intense autism-related challenges of being a younger child and into a couple of fairly smooth-sailing tween years, I vaguely remember hearing from friends that teen years bring fresh challenges for some autistic youths. But at the time, I was so immensely grateful that he was enjoying school and having a good time with everything in his life that this information wasn’t strictly relevant.

Ah, but then he grew 4, 6, and then 8 inches, and now at 13, he suddenly is a head above me and has a voice so deep it caused some kids he was gaming with online to accuse him of being an adult. 

If I think about Noah returning to school in the current structure he’s in, it makes complete sense to me that he is having difficulty adjusting.

Last year was so purely surreal with everyone in our family sandwiched together in a comfortable little pod. In retrospect, I feel we were expecting too much by rather jarringly putting Noah back in a new school in mainstream classes all day for the first time after all of that time in the pandemic bubble. 

On the other hand, one of the challenges of parenting an autistic child for me has been trying to find a balance of expectations. That is, I think it’s important to hold high expectations as I would with any of my neurotypical children and not underestimate what my child is capable of, but at the same time, it can be difficult to tell if I’m expecting too much. In all cases, I find myself again and again an imperfect parent for his needs. 

For a teenager who relies heavily on the comforts of routine, Noah has suddenly gone from a year of relatively shapeless COVID days to spending four long days a week away from home, climbing on a bus at 8:30 a.m. and not returning home until 5:45 p.m., rushing from class to class down loud, crowded hallways with very little time in between. 

Lunchtime, he tells me, means getting a plate that leaves him still feeling hungry for the rest of the day, which he eats in a cafeteria that is an exercise in sensory overload. To boot, because he reads on a college level, he moved from relatively unchallenging classes to more advanced ones when he moved into the school.

And then there’s the constant worry about getting COVID-19. Although he understands that as a teenager, he is less likely to become severely ill, he also understands that it’s still a risk (although we do plan to get his vaccine this week now that it has been approved for teens). 

One of the symptoms of his autism disorder is that he experiences heightened anxiety about certain things. Since many of the teens in his school don’t practice good mask hygiene or any degree of social distancing, he finds many situations at school to be frightening, or at the very least, anxiety-inducing. 

And then there’s the social side of things. When he was younger, he could usually find one or two people in class that he got along with. But middle school makes it harder to develop connections since kids are with different groups of students throughout the day, especially for teenagers who struggle with understanding social cues and connecting easily with others. Although it’s hard to tell how well he’s getting along with other students or if anyone is giving him a hard time because often he can’t tell himself, we get the sense that he just doesn’t really talk to anyone all day long. 

I was bullied as a teen, but at least I was never alone. I always had someone I could hang out with or talk to, friends I would pass notes with in class or chat with in the hallway. Imagine how isolating it must be to go through the day surrounded by people and yet really not connect with anyone. 

What is School Refusal?

According to a 2017 article in Research in Autism Spectrum Disorders, “School refusal behaviour in students with autism spectrum disorder (ASD) is poorly studied despite being considered a serious problem” and is “pervasive in students with ASD.” A student doesn’t have to be autistic to experience school refusal, but the condition is especially prevalent among autistic teenagers. 

School refusal isn’t just wanting to skip school. Instead, students with school refusal are unable to tolerate certain aspects of attending school or the school environment. Many experts advocate that students who experience school refusal are said to “experience fear or panic” at the mere thought of going to school. Since many autistic teenagers have difficulty understanding, processing, and expressing those feelings, they can come out in challenging and disruptive ways.

These are just some of the more common symptoms that may indicate a child is stricken with school refusal rather than typical teen pushback:

• Avoidance of school
• Refusal to move in the morning
• Hiding under the covers
• Extreme emotional or physical outbursts before school
• Fatigue
• Clinging behavior, like refusing to leave the car in the morning
• Shutting down when the topic of school comes up
• Acting out when the topic of school comes up
• Begging not to go to school
• Physical symptoms including headaches, stomachaches, and extra sick days
• Feeling sick in the morning but better in the afternoons
• Difficulty sleeping on a school night
• Visible signs of increased anxiety, including stimming, rocking, and obsessions or rituals

When kids are at home, they feel comfortable and safe, and they’re in an environment that feels predictable and controlled. At school, things can be less predictable, causing fear and intense anxiety. 

These are some examples of things autistic teens can have trouble coping with or tolerating about school:

• Difficulty processing and understanding school content
• Lack of friends
• Intense school timetable
• Trouble with organization
• Sensory problems
• Teachers perceiving them as disrespectful, rude, or inappropriate
• Students perceiving them as rude or inappropriate
• Inability to fit in socially
• Difficulty understanding social cues or jokes (due to literal thinking)
• Difficulty coping with unstructured time during lunch 
• Difficulty with transitions

Helping an Autistic Teen With School Refusal

I want to be completely honest with my readers and let you know that our family is still in the phase of understanding that we have a school refusal issue. We haven’t figured out any solutions yet, and we’re learning as we go. But I also want to share what we’ve learned so maybe another family won’t feel alone in their journey.

Communication

One of the challenges of parenting Noah is the communication barrier doesn’t always look like a communication barrier. He can talk to me all day about cars, the events leading to World War II, why Fear the Walking Dead has better characterizations than The Walking Dead, but when I try to find out how he’s feeling about something, at best it’s like emotional bumper cars and at worst, he can’t seem to even hear me talking.

Several websites suggest trying to talk to your teen about what’s causing their school refusal. However, if your student is like mine and struggles with explaining and understanding their feelings, it may be better to simply acknowledge and validate those feelings. You can also ask your student leading questions like what they would change about school if they had the ability to. Another suggestion is to use a thumbs up/thumbs down system and list all of the parts of the school day that may be causing your student anxiety, starting with the morning bus ride and going all the way through to the end of the day. 

Whatever you do, it’s important to try to get to the heart of the student’s feelings so you can support them, advocate for necessary IEP changes, and communicate with teachers about supporting your student. 

Schedules

Strict schedules can give many autistic students a degree of comfort in knowing what to expect. If you can give your teen a visual schedule it may help. But it’s also important to keep students on the same schedule as much as possible.  

Since Noah doesn’t go to school on Wednesdays, Thursdays and Mondays are our nightmare days. All things considered, Tuesdays and Fridays are always easier. Being in a safe and comfortable environment and then having to go back to essentially a 9 to 5 schedule the rest of the time is brutal for him. 

Unfortunately, putting Noah back in that school model after COVID Year was a bad judgment call, although we would have had no way of knowing that at the time. At this point, we’re focusing on maintaining a tight bedtime and morning routine and trying to hang on for the rest of the year. If TPS stays on the split-week model next year, I’m not sure it will work for him. 

IEP Strategies

As anyone with a child on an IEP knows, each student’s needs can get pretty individualized. When I looked into IEP strategies for helping with school refusal, they pretty much ran the gamut from using a reward system to getting a youth involved in afterschool clubs that interest them. The takeaway for me is that finding out what your teen needs is going to be a learning curve.

The TL;DR Version

If your neurotypical, autistic, or otherwise neurodiverse student is experiencing school refusal, I really want you to know right now that you’re not alone and that it’s not their fault. Last year was a screwed up, crazy, rotten banana sandwich of a year that blew anything this Gen-Xer had seen out of the water, and I lived through the end of the Cold War, the first Satanic Panic, and the rise and fall of Crystal Pepsi. We’re all hanging on white-knuckled at this point while trying desperately to fit back into clothing with any sort of waistband, so a little grace all around is the order of the day. 

I’m not an expert, just a mom who is learning on the job. But my best advice is to try your best to get through the end of the school year and then spend the summer reading, talking, and making a solid attack plan for next year that involves your kid, their teachers, and a helluva lot of empathy all around. 

Good luck, Godspeed, and have a lovely week in your nebula.