Neurotribal Elders

Recently I finished reading what is, quite possibly, the most important book I've ever read. It's called Neurotribes by Steve Silberman, and it tells a brief history of autism and how autistic people have been perceived and treated over the past century. It's an eye-opening book, and if your life has been touched by autism, I advise you to go read it.

The book is important to me because my kids are on the spectrum. That's not the only reason I’m writing this, though. There’s also my father.

Dear Old Dad is what you'd call a voracious reader. His favorite joke is that he buys books by the pound, except he’s not joking.

He’s been that way ever since he was a boy. Sometimes it was comic books, sometimes it was Greek mythology. If it was fruit of the tree Gutenberg planted, Dad devoured it. If you’re thinking “NERD!” in the back of your head, you wouldn't be far off. If you say it out loud, though, take care to smile. And be a long way off. In addition to being a nerd, he's also built like a six-foot-tall fire hydrant and has been known to absentmindedly break metal eye-bolts with his bare hands.

The reason I bring him up in the context of a book about autism is a story he used to tell.

When he was a young boy of twelve, he shared a wall with his parents’ bedroom. One night he heard his parents arguing about him. His mother wanted to take him to a psychologist because he was reading too much instead of making friends like “normal” boys. Grandpa disagreed, but Dad knew that a fifty/fifty shot was bad odds.

Being a practical and, above all, subversive man, he hatched a plan. He packed a lunch, grabbed a basketball, and told his mother he was going out to play. Once out of sight, he'd go to the library to read his fill. Before returning home he'd stop at the park and rub dirt on his clothes and face so it would look like he was doing “normal kid” things.

A couple such trips did the trick. The topic of psychologists was never raised again.

The point?

As Neurotribes documents, until very recently, children with “divergent” interests were frequently pathologized, institutionalized and worse. In that light, my father’s story ceases to be merely one more entry in the pantheon of wacky Decker family anecdotes and becomes something more chilling.

I can see the alternate history where my father was taken to a psychologist, became uncooperative, and got diagnosed as being (and this was the official medical term at the time), an “imbecile,” which generally carried a life-sentence to an institution. Unlikely, perhaps, but still a real possibility. Sometimes you have to marvel at how much your life depends on the flap of a butterfly's wings.

Speculation aside, I think that story is the reason why my father never objected to my own insular hobbies. I liked to read and write as a boy, but my passion was video games – and my dad more than tolerated, he participated.

Some of my fondest childhood memories are of the two of us score-chasing each other at River Raid (I still have the patch!), or the time the Area 51 machine at the arcade reset because we were doing too well.

Eventually games got more complicated than he wanted to bother with, but he seemed to have learned the lesson of his own childhood. He was determined to not pressure me the way he felt pressured when it came to “normal” social stuff. If I preferred the company of the Mario brothers to most of the kids in my school, well, who was I hurting?

I used to write this off as my own simple introversion. It just ran in the family, after all.

But Neurotribes shed some light on some things I barely noticed before. Maybe the things I thought were simple little tics that calmed my anxiety were more important than I knew. Maybe the social awkwardness and absentmindedness were signs of something bigger than simple introversion. Maybe I'm not so neurotypical after all.

Yeah. I hear you. I’m always the last to know.

My kids are officially on the autism spectrum. I understand them, even if I don't have a diagnosis myself. I’ve been the non-neurotypical kid in the room, raised by parents who had been the non-neurotypical kids the room.

I will stand by my kids, and for them, as long as I live. If I’ve learned anything from Neurotribes, it’s how important emotional support is to an autistic child. I know they notice when I try to connect with them on their terms, because I remember my father doing it for me. It helps. It may not always seem like it, but it helps.

Now if you'll excuse me, I have to go play some games for my kids. They love them too, and if that’s my bridge to their world, I’ll take it. They’ll thank me for it one day.

Which reminds me: Thanks, Dad.

Comments

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Great post!
Thank you for sharing, your father sounds like a great guy.

DoubtingT... If you weren't already one of my utmost favorite writers on this site, you certainly would be now. Your article resonated with me very, very strongly (dust? no, it's not dusty in here, why do you ask?).
As soon as I saw the article's title on the front page, I just knew this was about Neurotribes. I'd seen the book mentioned and had sent it to my dad, saying "hey, you like non fiction, read this?" As you know, my boys are on the spectrum. When my eldest was diagnosed, I self diagnosed myself and got an "official" diagnosis. I'm on the spectrum too. My dad hasn't taken the steps to get a diagnosis, but it's pretty much a given he's on the spectrum too. So yeah. This article... wow. Thank you for that.

As someone that's got a touch of the 'sperg, I've wondered what it would be like if I were to have kids. The world today is a lot more open to the things that made us outcasts, but one still wonders if that feeling of alienation and confusion still would transfer down.

After reading this, I'm good. So thanks for preemptively putting some of those fears to rest.

Yeah. I wouldn't be shocked if I were on the spectrum as well. Great article, DT. Book added to my wishlist.

Relatedly, Silberman had a great interview on Inquiring Minds a few weeks ago on the subject of Oliver Sacks and autism:
https://soundcloud.com/inquiringmind...

I'm a big fan of social psychology and behavioral psych. I'll definitely be checking this one out. I've got it on hold at the library already.

I'm in the middle of the book - I think it's great as well. Thanks for your essay. As you know, my son's on the spectrum, and I'm always wanting to learn more to understand him better. More tolerance, more understanding is what the world needs.

Thank you for the well written piece and the introduction to the book.

I just checked the e-book out from my library.

Spaz wrote:

As someone that's got a touch of the 'sperg, I've wondered what it would be like if I were to have kids. The world today is a lot more open to the things that made us outcasts, but one still wonders if that feeling of alienation and confusion still would transfer down.
After reading this, I'm good. So thanks for preemptively putting some of those fears to rest.

It's really hit or miss. The jury is still out on my youngest, he might be more in the "Asperger" category, but my eldest is deep, deep in the spectrum. As in non verbal, four years old and still not potty trained. As an Aspergirl, I didn't feel the profound desire to have kids when I was younger: while my peers would coo over babies and how adorable they were, all I could think was how much they cried, pooped and puked. But I relented, for my husband and for a chance to pass on a part of me. And having kids is the most difficult thing ever. I've had more meltdowns, and more spectacular ones then I have ever had.
But then again, without my boys, there's a good chance I never would have known who I really am. My neurotypical mother, bless her heart, always thought I was different, but that was it. It's very likely I wouldn't have gotten my diagnosis.

TL;DR: it's not that simple, but YMMV.

all I could think was how much they cried, pooped and puked

It is well worth consideration!

Thank you for the article, and for continued awesomeness.

Book picked up and started. I'm seriously wondering if I'm sitting on the Asperger's end of things myself. I'm checking off quite a number of the symptom boxes.

Tanglebones wrote:

Book picked up and started. I'm seriously wondering if I'm sitting on the Asperger's end of things myself. I'm checking off quite a number of the symptom boxes.

The first step beyond my boys' diagnosis was self diagnosis, and the Aspie Quiz was a pretty big step for me. Of course, a formal diagnosis will avoid confirmation bias. And we have an Austistic Adults thread for those who want to ask questions of the Autistic Goodjerhive.

Eleima wrote:
Tanglebones wrote:

Book picked up and started. I'm seriously wondering if I'm sitting on the Asperger's end of things myself. I'm checking off quite a number of the symptom boxes.

The first step beyond my boys' diagnosis was self diagnosis, and the Aspie Quizz was a pretty big step for me. Of course, a formal diagnosis will avoid confirmation bias. And we have an Austistic Adults thread for those who want to ask questions of the Autistic Goodjerhive.

Huh. 134/200, likely Asperger's. Well, I've got an appointment with my psychiatrist in May; might as well bring this up with her then.

146/200. Very likely Asperger's.

Color me unsurprised. Thanks for the link to the quiz, Eleima!

149/200. I'm not really sure what to do with that.

I scored 159 last time I took it. Like I said, it's not the be-all and end-all, only a diagnosis with professionals will give you a definite answer. But even then, the question remains, and Wembley kinda touched on this: what do you do with it? For me, it was a better understanding of who I am, why I am, and how I function. Which led to easier relationships with close family. And better performance at work, because I work with being neurodiverse, not against it.

Eleima wrote:

I work with being neurodiverse, not against it.

I think that's the takeaway from Neurotribes. A lot of professionals treat non-neurotypical behavior like a disease to be cured, rather than something to be understood and accommodated within reason. That attitude led to some, frankly, disgusting treatment of neurodiverse people that is still in practice in a lot of places.

Spoiler:

A lot of treatments for Autism stem from a "study" by Leo Kanner that consisted of one autistic girl. At one point during the study he got so angry that she wouldn't stop stimming that he slapped her, and she was so surprised she stopped for a while. That became be basis for autism treatment for decades. Some places still use electric shocks today, which were thought to make it more "scientific" because it was standardized and repeatable. Presumably the other option was giving the therapists a rolled up newspaper.

That's not the worst of it, but I advise you to read the book for full context.

39—though I feel like "neurotypical" might be too broad a term. I'm an extrovert, but I tend to freak people out by how extroverted and overtly emotional I am.

Your neurodiverse (Aspie) score: 70 of 200
Your neurotypical (non-autistic) score: 153 of 200
You are very likely neurotypical

That test is fascinating. The graph is great once I figured out what it means by reading the pdf that goes along with it. It's really worth downloading to get those details. Average to high for NT in all the measures. For Neurodiverse (Aspie): very low in Social and Communication for Aspie, medium in Relationship and Perception, and very high--in fact, the highest of all ten measures--in Talent.

I enjoyed this read. I have a stepfather that has Aspergers (I think), and I've wondered about myself for some time now. One of my best friends has an autistic daughter as well, so knowing a little about this topic is important to me.

I'll definitely be checking this quiz out later, as well, thanks for the link Eleima.

I downloaded the sample on my kindle, and it's in my Book Pile. Great article, Thomas.

Wow.... 165/200 aspie score! Even if I give myself a (huge) 20% margin of error - over-estimating/overstating my answers, that still puts me firmly in the "self-diagnosed as likely" camp. (my son has been diagnosed as "on the spectrum")

I can't say I'm surprised... or bothered, by it. I've often felt that I'm "acting like a normal person" in social situations, and find it exhausting. I've had my share of "OMG, I HAVE to get OUT OF HERE!" moments - stores, parties, crowds - where I've been a hair's-breadth away from just shoving everyone out of my personal space (if I can put my arms out and touch you... you're too close)... works for mosh-pits... not so much at Costco.

So... we going for high scores? ;p

Wink_and_the_Gun wrote:

Wow.... 165/200 aspie score! Even if I give myself a (huge) 20% margin of error - over-estimating/overstating my answers, that still puts me firmly in the "self-diagnosed as likely" camp. (my son has been diagnosed as "on the spectrum")

I can't say I'm surprised... or bothered, by it. I've often felt that I'm "acting like a normal person" in social situations, and find it exhausting. I've had my share of "OMG, I HAVE to get OUT OF HERE!" moments - stores, parties, crowds - where I've been a hair's-breadth away from just shoving everyone out of my personal space (if I can put my arms out and touch you... you're too close)... works for mosh-pits... not so much at Costco.

So... we going for high scores? ;p

If we are, I'm feeling awfully inadequate now

144 neurodiverse for me, which isn't all that surprising. Some of those I couldn't hit yes hard enough to.

ClockworkHouse wrote:

144 neurodiverse for me, which isn't all that surprising. Some of those I couldn't hit yes hard enough to. :P

Likewise.

Your neurodiverse (Aspie) score: 106 of 200
Your neurotypical (non-autistic) score: 74 of 200
You seem to have both neurodiverse and neurotypical traits

I attribute a lot of this to my early training. For example, I was trained to maintain eye contact. It's highly uncomfortable, but I can do an acceptable amount of it.

sometimesdee wrote:

Your neurodiverse (Aspie) score: 106 of 200
Your neurotypical (non-autistic) score: 74 of 200
You seem to have both neurodiverse and neurotypical traits

I attribute a lot of this to my early training. For example, I was trained to maintain eye contact. It's highly uncomfortable, but I can do an acceptable amount of it.

Yeah. I scaled down a number of the questions from 2 to 1 because of tricks that I've developed over the years. There were also quite a number of questions that would have been a 3 or 4 if higher numbers had been available

You folks have tricks?

No wonder my communication score was less than 1.