Autism & Back-to-School: What Do You Wish You Knew?

Does back-to-school make your stomach do backflips? Ours, too. So we asked some of TPGA’s contributors what they wish they’d known — as parents, or as students — about the back-to-school season. Here’s what they shared:

Mir Kamin

I knew it was okay to press for what my kid needed, but it took me a really long time to learn that it was also okay to admit when it’s time to stop trying to hammer your square peg into a round hole (and go find a square hole). I never in my wildest dreams expected to be a part-time homeschooler/unschooler, and yet it turned out to be a wonderful solution for our family once I gave up on the assumption of “making it work” with public school.

Mind you, classroom accommodations provided by my son’s IEP worked for a while … until they didn’t. I’m so glad I finally stopped viewing pulling him from public as “failure” and realized it was actually progress. Success — much like our kids — is rarely one size fits all!

Nick Walker

There’s a lot that I learned later on, in adolescence and adulthood, that I wish I’d known in kindergarten and elementary school.

I wish I’d known the things that I later learned through aikido training: the self-regulation and self-defense skills; the ability to both inwardly access and outwardly convey calm centeredness and physical confidence.

And I wish I’d known that I wasn’t alone, that I would eventually find more and more people like me. By this I mean not only the Autistic community, and the friends I made as a teenager and adult who weren’t Autistic but to whom I could relate in other ways. I also mean that I wish I’d known there were others out there who’d seen what I was seeing and experiencing: the dynamics of institutionalized oppression, privilege, marginalization, injustice, and abuse; the fact that school was clearly constructed to brutalize children into soulless conformity and unquestioning compliance, and to crush, rather than cultivate, genuine creativity and curiosity.

I could see all of this clearly, but I had no words for it, and the fact that no one else seemed to be seeing it left me feeling alienated and furious; the frustration ate at me every day for years. I wish someone had said to me, “Yes, what you’re witnessing and experiencing is institutionalized social injustice; it’s everywhere in the world and it follows the same basic patterns that it has followed throughout history. There are other people who’ve seen it for what it is, who’ve come up with words for it and written about it. These systems of injustice dominate human society, and yes, most people are largely oblivious and complicit. But some people have woken up, and more people will; you’re not alone.”

I wish someone had said this to me on my first day of kindergarten. Never assume a child isn’t ready to understand such things. Sometimes the thing that’s causing meltdowns and “behavior issues” is that a child DOES understand.

Christa Dahlstrom

Like lots of families, we provide every new teacher, activities director or camp counselor with a “Quick Reference Guide” for our son. It starts by highlighting his strengths and how to capitalize on those. It also talks about what his challenges look like and ideas for preventing them or dealing with them. But unlike many families, we’re lucky to have a graphic designer in the house, so ours looks really nice, too. (I kind of think of it as a pamphlet that could be titled: YOU’RE GOING TO REALLY LOVE OUR KID, DAMMIT!!)

We tailor it a bit for each new year – reflecting his new strengths and tips we’ve discovered to help him be successful — and for each setting.

We’ve had many teachers tell us they wish every family would do this for their kids regardless of neurological makeup.

I would also say to start the year by giving new teachers the benefit of the doubt and trying to have an optimistic attitude. It’s SO easy to think, “This person has never met my kid and they’ll never ‘get’ him.” or — especially at the pre-school/kindergarten level — “I’m the only one who understands him/her. How can this possibly work?”

Start by believing it’s going to be a positive experience, that the professionals are skilled and compassionate, and that your kid is resilient and adaptable. (I have to work really hard on this sometimes!) Things may not go perfectly, but I’ve found it’s better to avoid being on the defensive from the start — plus, I think our kids pick up on our fears and it’s much easier to build a positive, collaborative relationship with teachers if you send a message to them that you trust them. That makes ironing out the inevitable kinks easier.

Lindsey Nebeker

I wish I had known not to be ashamed to ask for accommodations and support during my school years. I had transitioned from special education to a typical classroom by the First Grade. Once I mainstreamed, my parents were hesitant to disclose my autism diagnosis to the schools. I was enrolled in private schools, which (at the time) had more flexibility in whether to accept or refuse funding extra services for a student with disabilities.

At the time, I was also very secretive about having a disability. Almost no one outside my family and early intervention team had that knowledge. I was afraid and embarrassed to admit I had a disability and that I could have benefited some additional services. It wasn’t until after graduating from college that I became more open about my disability.

I skipped 7th grade, which happened to be when sex education was taught at my school. However, I don’t think I missed out on anything. The sex education curriculum tended to be more focused on biological information (anatomy, etc.).  The sex education curriculum included safety and protection, but only addressed the ‘black-and-white’ (or obvious) indicators to watch out for. When it comes to sexual abuse, there are often several ‘shades of gray’ that kids and adolescents need to watch out for. I wish instructors would understand how important it is to address these ‘shades of gray.’ It is especially difficult for students on the autism spectrum to naturally pick up on these ‘shades of gray’ without being explicitly taught what those ‘shades of gray’ are. It may not prevent all instances of sexual violation to autistic individuals, but it can certainly reduce the incidents.

Kristen Spina

The one thing I wish I had known is that it would have been okay to wait another year before my son started kindergarten. I sometimes think that if he were a year behind — going into fifth grade instead of sixth — so many of his challenges would have been, well… less challenging.

He has been a solid year behind in reading, in math, socially, since he started school — as the years tick by, I find myself regretful that we didn’t slow it down when he was younger, give him a little extra time to cement his foundation. But I wasn’t advised to do that, and I didn’t even really know it was an option. The school wanted to promote him, to get him into kindergarten and get his services in place, they kept insisting he’d catch up by third grade, but honestly, how could he? Every year the work got harder and the kids moved faster.

The notion of success, or being successful in the classroom, has been hard to pin down for him, and considering that, I think the better thing for us to do would have been to wait it out a bit, to give our son a little more room to breath. He’s had to work so hard for so much, and there is nothing we take for granted. I simply wish I could have given him more time. Maybe then it wouldn’t have been so hard, maybe some things would have come easier — he might have been in a class that spoke more to his developmental age, rather than his actual age.

In the end, I have no doubt he’ll find his way. I just wish that back then, in the early early years, I had had a better understanding of “in his own time, in his own way…” The truth is, I really don’t know if it would have made a difference, if it would have truly been better for him in any way, but I have a feeling it would have.

I know that when it comes to the future, that is the one thing I think about most — the freedom to learn at his own pace — even if that means his path is not on the college track or within the boundaries of what so many of us think of as academic success.

And, perhaps on a lighter (shorter) note:

I wish I had known that thousands of hours and countless dollars  in OT still would not guarantee that my son would have legible handwriting and that ultimately, legible handwriting was a superfluous goal because in the end, the only thing that mattered (as he hit 5th and 6th grade) was that he knew how to type. With changes in technology and the demands of the classroom heading into middle school and high school, the only goal we should have been concerned about was typing. I’d like to have all that time and money spent in private OT back, or at least have had the foresight to insist that his time there was better spent.

Liane Kupferberg Carter

Columnist, Autism After 16

When our son entered our local public high school, teachers and administrators said that he was “unteachable” because of his behaviors in the classroom. Even though he had been teachable all the way through the local elementary and middle schools. High school administrators refused to work with his previous teachers at the middle school, for reasons too complicated to explain here – turf, ego, etc. —  even though previous teachers understood his learning style, and knew how to manage his

We knew that he was legally entitled to a Functional Behavioral Assessment (FBA), even though no one at the high  school suggested it. We had to insist on it. Unsurprisingly, the outside professional who came to observe him told the high school staff that the problem was not with our son; it was a combination of inappropriate curriculum and teachers who were unused to teaching students with autism. I learned the hard way how imperative it is that teachers communicate with each other.  It seems so obvious, but often it doesn’t happen, especially when a child changes buildings.  No child is unteachable; don’t let anyone tell you otherwise.