APOCALYPSE TEAM

Dedicated to TC and RS—hearts of gold. Thank you.  And for EBB and XBB, always. 

Dear Persons,

I don’t know why you’re here. Maybe you’re Autistic, or have a neurodivergent child, loved one, family member, student, client, partner…

I do know almost all of us—whatever our neurology—are barely keeping things together in the mental health department, however close we might be to a “jab.”

I know my family is on edge. My partner is older and I have autoimmune diseases. My children have seen me laid low for months by a random virus. I know my kids and I carry this information inside as we watch the COVID numbers and hear about how certain health- and age-related factors increase risk, especially as news of variants calls immunization into question. 

And all kids think their parents are old, anyway, right? And even if not, they’re worried about their grandparents dying. Or afraid their parents may lose their jobs. Or anxious about never being able to be a carefree kid again.  

The other day one of my most solidly NT friends texted me about how obsessed she is with getting vaccinated. 

“You’re so picky,” I told her.  “All neurotic, like, ‘not wanting to die.’ And so spoiled with your wanting to ‘go places’ and ‘have a life.’” 

The thing is, while we are all struggling, many adults are at least able to articulate how challenging this year-plus has been. 

For children, teens, and young adults, the experience is both unprecedented and confusing. However much we try to get things out in the open in our families, it takes more wisdom and self-knowledge than most young people have to process this mess. 

I personally believe simply staying alive this year to be a major accomplishment for anyone. Congratulations, dear reader!

Add in an element of neurodivergence and things can get pretty durn complicated. 

Many of us deal with prosopagnosia or challenges with social cues. If neurotypical people are having a hard time doing so, how on earth do we recognize people or read social cues when people are wearing masks? 

How do we continue to make progress in our social fluency with little or no opportunity to do so? 

How do we avoid falling into a digital-only world? What if that feels safer and easier than the “real” world, especially now?? 

And what if we never fully re-emerge/merge with F2F reality? 

Sound familiar? In my family and my friends’ families, Autistic and other neurodivergent young people are spending almost all of their time online, terrifying their parents and abdicating their school responsibilities while soothing themselves. 

And I know this is not only happening to kids with differences. In fact, I personally know of three neurotypical young people (some of whom were even able to initially do well with remote learning) who have basically given up on school this year. Two of these kids are seniors who were able to rally for two pandemic semesters and just couldn’t do it for a third. 

How common is this? One of these kids has the same name as my son, so I’m thinking…ya. 

Will the colleges they were accepted into last fall agree to ignore their school refusal?

And these kids are arguably the lucky ones, however much their “failures” may reflect underlying stressors. What about the ones overtly living in despair? Heavy depression? Crippling anxiety? 

I’m actually not sure whether my son’s school refusal arises from pandemic-related depression or anxiety, because, like me, he has a hard time knowing exactly how he feels, especially when overwhelmed. Many people with neurological and other differences experience varying degrees of alexithymia, a condition defined by issues with identifying, expressing, describing, and/or connecting with our emotions or those of others. 

This is such a pervasive part of my life that it was only by watching how my neurotypical daughter came to apprehend the world that I even realized it was possible to be so immediately savvy about internal states as they relate to ourselves, the external environment, and other people. Unless I’m in a very, very simple situation, I need a loooooong time and lots of processing (writing, thinking) to know the why and what of my emotions and body states. 

That’s not to say we don’t have feelings! It’s more like some of us (me, my son) are not, in the moment, quite sure why we have (lately, often huge) feelings in our bodies and minds, or what those sensations mean. Finding ways to deal with this can be hard, even for adults. 

My main coping mechanism for this facet of my brain is to keep a ridiculous amount of lists, on paper and in my head. Regular lists, such as to-do lists, but also lists of what is going on that’s hard, or things to look forward to, to counter the challenges. 

It’s a little harder, though, to keep comprehensive, reliable lists with all of the instability and uncertainty wrought by the last year’s political maelstrom and global pandemic chaos.

I was recently zoom-talking with someone about her application to graduate school for a part-time counseling program that will take about five years to complete. 

“That’s great because people are still going to be figuring out how they feel about this year even by the time you get through grad school,” I said. 

Silence…“You think?”

Well, yes, I do. 

I certainly don’t know how I feel about it now. We are all trying to figure this out together, and it’s so intense. So overwhelming. How do we even begin to make sense of stuff we never could have imagined just over a year ago?

A few months ago, I wrote my son’s professors at the wonderful university where he’s had what might very conservatively be referred to as a “challenging” first year to explain some of what he seems to be going through. 

I told them how when he first got home for winter break, I asked my son whether he and other students were experiencing anxiety and other issues because of the pandemic and politics this year. A classic "under-exaggerator," he admitted that students were in general quite worried. He said he'd even assembled his own "apocalypse team." I asked if he was joking and he said, "Kinda." 

I shared that, as a former professor, I have many friends who are in secondary education and they’ve told me that the anxiety level of students is almost unbearable. Like the school my son attends, these schools have taken steps to assuage and address students' concerns during this unprecedented time. Some have even suspended grades in the face of severe mental health challenges in the student body linked to the pandemic et al.

Many, many students’ academic and social situations have deteriorated over this period, not to mention the growing financial and family stressors many of them must be facing.  

On a purely academic level, how well are our students learning? How much of a toll are zoom classes taking on their neurology, their energy, going on three semesters now? Students who need hands-on instruction, who learn through their bodies and senses, who need to see things side by side or interact face to face, are just a few subgroups suffering and losing out. 

I know for a fact if my son could have had in-person help with certain things, not to mention consistently, casually connected and engaged with his teachers and others—and thereby gotten invested in tactile and personal learning, developed some real-world accountability—it would have made a world of difference. 

Of course schools and educators are doing their very best in this context, and it’s taxing to their systems too. But children and young people are being expected to learn in new and untested ways while coping with an underlying dread on a level we’ve rarely if ever seen before. 

When will we be able to truly fathom the full impact of this year-plus? 

The day I sent that email to my son’s teachers, our nation's capitol was under siege from armed lunatics. We were in the car en route to a family hike up a local mountain when we first heard the news.

During said hike, my son would not take his mask off, even when there was no one around. I asked him why. 

"Mom, if I ever am in danger and can't breathe, this will help train me for that," he said. Apocalypse preparation again? Check. 

I'd never heard my laid-back son say anything in this vein. 

A few minutes later, I asked my very sensible, ultra-neurotypical daughter if that sounded like the way her peers think right now. She said, "Trump was elected right when my friends and I were beginning to think about politics. Being scared and everything being crazy is just normal for us." 

Even early on in this pandemic, it struck me very deeply that while many students are building resilience and so on, many, many are facing setbacks with grave, lifelong consequences. 

Now, a few months into the new year, my son’s school has already experienced a major surge, enacted a 10-day lockdown (which, while inevitable and the right thing to do, did not contribute to academic success and/or mental wellness for some, to say the least), moved many classes to remote, and considered closing down. 

Over this period, my son went from enthusiastic and invested in making the second pandemic semester of his freshman year better than the difficult first one to…completely disengaged. He’s found his own way to take care of himself in the melee, and it doesn’t involve a lot of homework. Compared to the devastated states some young people are in, I’m calling that at least a partial pandemic win. 

It’s hard to gain traction when immersed in uncertainty. Some kids, teens, and young adults, typically neurotypical ones, have the skills to adapt or thrive no matter what. But plenty of others don’t. 

Well into our third semester of this pandemic, even many of the young people who were able to rally for the first and second semesters are losing steam.

In fact, the damage this unstable and frankly dangerous situation has done to my son in his first year of college is immeasurable and will be reverberating throughout his life. I hope with all my heart he can recover and find his way again as the world settles.

I hope the same for the millions of other youth who’ve fallen behind academically, felt isolated, become depressed, faced increasing anxiety, and more over this terrible stretch of time.

The wisdom, compassion, and support of adults, especially parents and educators, have never been more crucial for our youth. WE have to rise to this occasion to be their Apocalypse Teams. 

As for the rest, honestly, my theory is that this pandemic year should just be a write off.

Let’s not hold anyone back a year if they want to move forward or kick them out if they haven’t performed up to snuff. Alternatively, let them start the same year over if that’s what they want. 

Let’s put healing and emotional wellness before academic judgment and “success.” I’m saying this as a lifelong teacher, and as a friend of many educators and mental health professionals. As a parent. 

Let’s get kids the help they need without penalizing them for not being able to adeptly navigate a year in which grown as$ adults couldn’t figure out a dang thing.

Love,

Full Spectrum Mama

P.S. VERY EXCITING NEWS: In the next year or so, my co-author Jenna Gensic and I will have a book coming out from Jessica Kingsley Publishers. Our tentative title is The #ActuallyAutistic Guide to Advocacy: Step-by-step advice on how to ally and speak up with Autistic individuals and the autism community.

P.P.S. You know it’s been a rough road when even compiling the LABELS for a post is traumatic. Yikes.