Not-so-great Expectations

     When I was first told that my son had autism, I went through the stages of grief. I denied, I raged, I bargained, I finally accepted. The acceptance didn't bring me peace, though. It was more of a resigned spiritual sigh, an acknowledgment that this was, indeed, my circus and this would be my monkey. I had to love this damn monkey, and I had to make sure it had comfortable shoes.

      At this point, we've made it fifteen years. There were many days and nights where I could not see this happening because I conjectured that  either he'd run away to the waffle house down the street and subsequently end up in juvenile hall for pilfering pancakes, or I'd end up in the psych ward after finally snapping and painting replicas of Van Gogh with the mold from my fridge leftovers.

     It’s easy to lose sight of the teeny tiny snail-trail sized successes we've had, though. When any given day can go from sunny to hurricane weather, you tend to survive by always knowing of a safe place (mentally or physically) to hide from the storm. But in looking back honestly, I can say that my husband and I really did seek out every possible thing that could help our son, and at least some of it has worked. But that was a story in itself.  I want to talk about how WE needed to change. How our own expectations limited us, and him. And about how, looking back on all of it, 

      When The Boy was born, he looked pretty standard: gorgeous, the most brilliant baby ever born to woman, intelligent, alert, a sure-fire award-winning baby. As I held him in my arms, I could see in him all the potential of an amazing future. He'd be able to do whatever he wanted, he'd have all the support and love possible, he'd have a loving big brother and a happy home, arts, music, enrichment, organic food, all the sage wisdom of older parents who were still young enough to play with him. I was a teacher, my husband a musician. He had it made.

 He'd have tons of friends, and artistic talent (maybe even be good at sports? Given my husband and myself and our innate clutziness, that seemed to be asking for too much, but who knew? He was a baby. He could mold like play-doh into any and all things at that moment.) He’d gaze, wide-eyed with wonder, at all the cool science and literature programs and museum exhibitis I could get him to. And summer camps? Wow! He was going to enjoy the heck out of those! He’d be the most exemplary camper in the history of camps! I imagined getting complimentary notes from counselors and teachers, wondering how my son could be so incredible, wondering how I’d done it!

     I love my son the way he is, make no mistake. He brings me joy on even the most turbulent day, and I can honestly say that I would rather be in his company than almost anyone else’s.  But during those first few years reality was far from what I’d imagined, and I had a hard time adjusting my expectations for a while.

     It turned out that my son started having problems in preschool (and further back, if I’d paid attention). We had to have meetings with the lead teacher to discuss his behaviors, and at the time I thought, “how bad can they be, really? He’s in preschool!” But he was wandering off, being disruptive by not staying focused, not following directions. I was sure this was just his indomitable spirit and (inherited) disdain for rules.

     So, when it was time for kindergarten (after keeping him back a year at the firm suggestion of the preschool director), I was ready for my positive school experience. Except his kindergarten teacher wanted to teach third grade, and she didn’t really enjoy boys who couldn’t sit still on their squares, and so he ended up in the nurse’s office, alone, for sometimes hours of the day. He started to come home and tell me he was a bad kid.

     As a life-long educator, I was not a teacher blamer. In this case, though, I did think that the teacher’s inability to deal with 5-year-old-boy fidgets was kind of unreasonable. We had a meeting with the principal whose response was ‘we just don’t have enough people here to really make this work for your son.’  And then he followed up with ‘and you don’t really live  within our school boundaries, do you?’

    When I started realizing that my son’s life was not going to be what I had imagined, my grief stemmed mostly from seeing other peoples’ kids succeeding at all kinds of things: sports, social interactions, academics, arts. I even got jealous of those ubiquitous bumper stickers declaring that someone’s kid was a honor student at whatever elementary school. I admit freely that it was not productive or healthy for me to compare my son to anyone else’s kids. Even my own niece and nephews were growing, joining clubs, singing, playing football. I seemed to be the only one in my family with a kid who didn’t quite fit whatever the standard of ‘normal’ was.

     I tried for so long to deny that anything needed attention, thinking that if we were consistent and loving, it would all work out. But it didn’t. Love can’t chase away autism. It can definitely help you get through dealing with it, but it doesn’t magically make it go away.

     It seemed like every school year brought more and more problems. In third grade, he started to hide under desks and run out of the room. In sixth grade, we had to change schools because there were no walls between the classrooms and he couldn’t stand the noise (neither could I.)  In seventh grade, his school closed and moved to reopen as an International Basketball school and they didn’t have room for kids with ‘special needs.’  On the day we finally came back to our public school district and said, “we can’t do this alone anymore,” we finally got some help. But the day the small bus stopped in front of my house to pick him up, I smiled and waved him on, and then sat on the floor, my back to the front door, and I cried after the bus had pulled away.

      I’ll skip to the conclusion: my expectations were out of whack with my reality. That was not my son’s fault. That was all me. And after quite a bit of time denying, grieving, and finally accepting, I began to adjust my way of thinking.

    I always loved him. But I started to accept him. I started to understand that his brain was not wired in the same way as most other people, but that was not bad. He saw things in ways that other people did not. He could create three-dimensioanl structures on his computer that I couldn’t even begin to attempt.  He moved so fast when coding games that I couldn’t even keep up visually. He had a finely honed sense of humor for puns, and he used it often. He was artistic, creative, a fantastic problem solver, tenacious in his desire to learn things he wanted to learn. How wonderful! How truly useful for a world where we need answers to questions we haven’t even posed yet!

     That’s when the idea of evolution occurred to me.

      What if, rather than looking at high-functioning autism as a deficit or a problem, we reframed that thinking and saw it as a strength? What if we could see the unusual approaches and talents and obsessions as opportunities instead of obstacles? How would that change our conversation about kids with high-functioning autism?

     And taking that a step further: is it possible that the burgeoning numbers of these types of individuals could signal a shift in human evolution? Perhaps we will need these types of thinkers to face challenges that we don’t even know exist yet. Shouldn’t we be harnessing and enhancing those talents, nurturing them, rather than trying to remold them to fit what we think people need to be?

    This is kind of a controversial idea, I realize. I proposed this idea to a former literary agent, and she was horrified. Her point was that parents of kids who have autism would be gravely offended and injured if I were to propose that this horrific condition were instead some sort of gift. She thought it felt dismissive and offensive, that it diminished the difficulty and suffering of parents and kids who arguably DO suffer quite a bit in the current system. (And again, I know of this first hand.)  I see her point, but I think the bigger question here is why do they suffer? Why is the system unable to guide them and work with their strengths and try to find ways for them to compensate for their weaknesses? Instead, we throw them into general education populations knowing full well that many are not equipped to deal with the sounds, lights, voices, and stimulus inherent in classes of 30 or 40 students.

     It reminds me quite a bit of the time when the term GATE (gifted and talented education) started to be used. At first, the idea of filtering out kids who were ‘gifted’ was a bit controversial. (I have my own issues with that term and the testing used to bestow that designation, but that’s for another time). Would it be fair to separate those kids out into another classroom, away from their ‘less gifted’ peers? We did it though; those kids needed more stimulating curriculum, things that moved at a faster pace, different types of teaching methods. But because they were being tracked upwards, no one really complained too much. (For those not in education, 'tracking' means moving students to common schedules because they have common needs.) 

    Tracking a student lower than their peers is really frowned upon but tracking them above their peers is okay. We have Advanced Placement and  Honors classes in high schools, and those are segregated classes of kids who are high achievers. Why do we do this? So the class can go at an appropriate fast pace. We can no longer put students with common traits on the opposite end in tracking, though. Kids who have difficulties with academics because of learning disabilities or other issues but be “mainstreamed”, ie, included in regular education classes with all the kids who aren’t tracked into the AP and Honors world. Dooming them to differently structured and paced classes takes away their opportunities, you see. They won’t have the option of going to college, so we are dooming them. Consequently, many of them drop out of high school or give up on graduating and leave the system.

     What if we were able to offer those students, many of whom have autism or other different abilities, classes that could play to their strengths and needs as we do with the kids in AP and Honors? Wouldn’t that be better? No, according to those in charge of education in many states. It would be doing them a disservice.

     If we could reframe how we see those students, and reframe how we deal with them in schools, what could we unleash? What underlying talents could we uncover, buried under years of institutional academic square peg/round hole syndrome? What if we saw these students as differently abled, not DISabled?

     Too expensive. Too difficult. Better to let them founder in general education classes with perhaps a special ed advocate teacher. They won’t get much out of it, but that doesn’t matter. As one teacher told me, “it doesn’t really matter if theyy pass a class, it just matters that they are included.” Schools check the box for ‘inclusiveness’ so they can show that they are offering a fair, equitable education to all students regardless of talent or challenge. But they’re not.

    And students with HFA (high functioning autism) are among the trickiest to handle in this. Many are fiercely intelligent and have extraordinary gifts and talents, but when they are forced to be 'included’, they fail miserably in many cases, or barely get by. There are small glimmers of programs and even work places that are encouraging.

    Accepting my own son meant something different than ‘fixing’ him. Accepting meant that I could love all the parts of him: his passion, his stubbornness, even his lawyer-like skill at arguing every single point of conversation. (“You’re arguing with me again!” Him: “No I’m not!”)

     This also meant accepting that the current system of education would not easily mold itself around his needs and styles, and I knew I had to find ways to help him do that, because the world wasn’t going to change to suit him. We began approaching his condition with the idea of finding ways to help him conform in his own unique way. That may sound strange, but we knew it was necessary, at least while he was younger.

     So I ask this question: if we were able to, as a society, identify and strengthen the skills of these high-functioning students rather than force them to conform to what we think education should look like, what might we find? Might we find an evolution of sorts, a new way of seeing the world, a new way of using information? It's an important question for the parents and children who live with autism, but it's also an important question for everyone else. The world is in a mess. Don't we need all hands (and brains) on deck to solve the puzzles we've set for ourselves? 

     Let the evolution commence. 

Changing the Narrative

Throughout history, some people have been identified as ‘geniuses’.

When many of these people lived, they were described as being eccentric, quirky, strange, awkward… but today, we might reasonably check to see if perhaps they also don’t fall along the autism spectrum. Why?

I think it’s because autism is not a disorder. It’s a gift.

That’s tough to hear in some ways. As the parent of a child with autism, I understand how difficult it can be to live with. How is it a gift? Suspend judgment for a second, and I’ll try to explain my idea.

My son is 15, very verbal, and has a host of difficulties with regular school and social situations, even though he is extremely personable and really loves being around people (for at least part of the day...he says he gets ‘peopled out’, and i totally relate to that.) We knew something was different with him almost immediately. He screamed when we bathed him, hating the feel of water on his skin. We learned to cover the coffee grinder to muffle the sound because it caused such a strong reaction. We only vacuumed when he was in a remote part of the house. We learned to work around it.

So, in what way can his way of being be seen as a gift?

He can solve problems in ways that others do not see. When given a challenge, especially a spatial one, he can derive solutions that I cannot even understand. He sees analogies that I don’t see and has insights that are unique to him, but right on point.

But he’s had trouble in traditional school. He doesn’t conform enough for public education and cannot so far handle the huge classes (40 per class in high school).  In smaller environments, he does better, but after many years of failures in school, his anxiety is now so activated that he has real trouble actually completing any assignments for fear that they’ll be wrong or he won’t measure up.

I don’t play  the ‘wish’ game. In fact, I have forbidden that word to be used in our house. Wishing is what people do when they weren’t able to get whatever outcome they wanted, but they are unwilling or feel unable to change it. I challenge that. If you do not like how things are, you MUST change things. If the outcome isn’t as you want it to be, change the narrative. We are all products of our stories, and change begins with changing that internal narrative.

I don’t ‘wish’ my son was neurotypical. I don’t ‘wish’ schools would be better trained to serve the kids who are like him. Instead, I want schools and society to see that the way he is works very well when other factors are corrected. I think a lot of his problems at this point stem from failed experiments in education. If he had started from preschool to be treated as gifted rather than problematic, how might things be different now? But still, I don’t ‘wish’ for that. I PLAN on assisting him in changing his narrative.

Autism Evolution is a concept that I had several years ago. I saw, of course, many other families struggling with systems that didn’t work for their kids, and the training wasn’t there to help the parents either, so a lot of stress ensued. Many of the parents who had kids more toward the verbal and critical thinking end of the autism spectrum talked aobut the amazing htings their kids said, did, created. They also talked about thes guilt and shame that visited them when their child got into troubl ein school, or reacted to a stimulus that someone with training would have known to avoid.

The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children in the U.S. have autism. The prevalence is 1 in 42 for boys and 1 in 189 for girls. These rates yield a gender ratio of about five boys for every girl (CDC).

The term was coined in 1908 but in 1943 American child psychiatrist Leo Kanner, M.D., published a paper describing 11 children who were highly intelligent but displayed "a powerful desire for aloneness" and "an obsessive insistence on persistent sameness." He later named their condition "early infantile autism." (Parenting Magazine, 2014) Since that time, autism has been seen as a ‘disorder’ rather than something that might be harnessed and enhanced and strengthened.

What if we changed the narrative? What if autism wasn’t a disorder at all, but a step toward progress? How would we treat it differently, and how would schools function for these students?

And why should anyone care? Sure, if you have a child with autism, it matters to you. But it shoudl matter to everhone. Because living on a planet facing monstrous climate change and social challenges, we need people who think of answers we haven’t thought of yet. It’s a matter of survival.

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