Three basics of parenting autistic kids

 When Marko was diagnosed with autism, I spent a lot of time stressing out. I wanted to know what this meant for my parenting. Where was the book that would tell me how to raise him? Where was the expert that was going to come and tell me what to do?

What I didn't realize right away was that I already had a leg up on any expert or book, because I had been raising him already for seven years. At this point, I've been raising an autistic kid for almost 13 years, and another one for six, and it's safe to say that I kinda know what I'm doing.

Especially as nobody else knows any better. Books exist, but some of them are dead wrong, and others simply can't tell you everything you need to know about your kid because the variation in autistic children is vast. I would argue it's much greater than the difference between a neurotypical kid and an autistic kid. I did read lots of books on autism, some of which seemed to be describing something very different than my kid, and some which had some helpful tips. Memoirs by autistic people actually helped the most, because what I really wanted to know was what was going through my child's head. When you know that, you can figure out what to do about it much more easily.

I could probably write a series of posts about this (and I might) but for today I just want to say: it's not complicated. It's just parenting. You have the same goals as other parents have, and while some of the tactics in standard parenting books will not work, plenty will. And that depends more on your kid than on whether they're autistic or not. Sensitive kids do not take well to yelling. Spirited kids hate to be told what to do. Some kids love when you joke around (Jackie does) and some will get more upset when you're silly (like Marko).

One of my main worries at the time was, do I try to change his autistic behaviors, or do I treat them as hard limits beyond which he can't grow? Should I be frantically trying to catch him up to his peers, or shrugging and watching them sail by?

In the end, it wasn't a helpful question. The real question is, which skills does an autistic child need and which behaviors are harmful? You should help them develop the skills they will need in life and guide them away from behaviors that harm themselves and others. Exactly like you do with other kids. But you need to have a lot of inner strength to stop yourself from comparing to peers, separating out the autistic side of your kid from the rest of the kid (you can't. your kid is your kid), or letting other people tell you to panic more. The person who tries to make you panic more is almost never a person giving you helpful advice. Either they're panicky themselves about autism, or they're trying to sell you something, but either way they clearly aren't here to help you.

Here are the three most vital skills I can think of for autistic kids. Though I am sure this is influenced by the specific ones I have; yours may be different. 

1. Regulate their emotions

2. Detect and regulate their sensory needs

3. Communicate needs to others

These are skills everyone needs, and autistic children may struggle with them more than others. There are many other skills autistic children struggle with: speech, fine motor skills, stylish dressing, detecting sarcasm, etc. But many of these are kind of optional, when it comes down to it, or they will naturally be getting some help with them at school. If you have an autistic child, you need to let go of the idea of your child being cool in school. They may eventually develop their own brand of coolness, but it's not a thing you can make happen. If they struggle with speech or writing or numbers, go ahead and nab all the therapy that seems useful, but be aware that some autistic kids won't catch up to their peers on these. You just can't know.

But these three are going to be vital, and the bulk of teaching them is going to rest on you, the parent, because you are there in more situations, when the need for them arises.

Emotional regulation

Not every autistic child struggles with this, but it seems like most do. I have seen arguments that autistic children only melt down a lot because they're treated so much worse, but I don't think it's just that. I have a sample of two autistic kids and two neurotypical kids, and the autistic ones just freak out more about the same size problem. Apparently the emotion parts of the brain are straight-up bigger in autistic kids.

At the same time, I'm not going to just roll with a house full of unhappy screaming. Let alone the physical aggression and property damage. I want my kids to be able to meet their upset feelings and work their way through them. At the same time, I don't want them to become repressed or self-hating.

I think a lot of emotional regulation problems stem from not being able to detect and name emotions, so that's step one. "I am upset, this is what upset feels like." This lesson alone took us years. And then "I can pause between becoming angry and acting on it." And last, "I have strategies to calm myself down."

This is all a work in progress. As kids are growing, you're not getting to step three on every meltdown. My main efforts lately are stopping them from hurting anyone, eventually de-escalating, and bringing the child to a point of being able to reason again. This looks like taking the angry child to another room, sometimes distracting with a conversation about a topic they like or giving them time to read or play a game, and then talking through the issue. How did you feel when that happened? Do you think it helped to scream at him? What could we do instead? Let's go back downstairs and ask him if he would like to play the game later.

To that end, I also bargain with my kids a lot. I want them to know that no is not a hard wall they have to crash into and then melt down, but only a roadblock on one specific avenue. What if they could still get something they want? So, no ice cream today, but maybe we could put an ice cream date on the calendar. Or we could go home and have the ice cream in our freezer. Whatever. 

And I never, ever set boundaries on the kids just for the heck of it. If there's no reason I can explain, well then I guess you can take a bath with your swimsuit on. You can go to school with your shirt on inside out. I'm going to encourage the whole underpants thing but that's not a hill I'm going to die on. With an autistic kid there are so many hills. You can't die on them all.

Sensory regulation

Everyone has a zone of sensory stimulation where they're happy. Maybe you're bored if you don't leave the house every day and you enjoy noisy parties, but after two hours of loud music you want to go home. Well, autistic people have a much narrower band of sensory comfort than other people. This may mean being over sensitive to some things, like textures or tastes or noise. But it also sometimes means they get twitchy and restless if they don't get to jump up and down, swing on things, or crash into the walls. So all the time you're working on giving your children the sensory things they need and protecting them from the ones they can't stand.

When your child is small, this is mostly your job. Your child can't communicate why that shirt is a bad shirt, but eventually you figure out it's tight on the armpits and go looking for shirts that aren't. You may learn how to bake veggies into muffins to avoid unpleasant textures, or give your kid hot sauce so there's a nice strong taste and they eat more food. It's a whole trial-and-error process. There's a growing market of items like ear defenders, seamless clothing, sensory swings, and compression garments to help autistic kids get into the zone where they're happy. There will be way fewer meltdowns this way, the child will be much more free to learn and relax and make friends and eat food when they are comfortable.

But while you're working on this, a lot of society is on the opposite track. They think sensory needs are a thing we fill for small children and have to train out of as they get older. Do they really need the headphones still? If they don't actively complain, we should take them away! And all that hand flapping or chewing on things is getting annoying, let's train them to stop.

The problem is that this strategy does not actually expand a child's zone of sensory comfort. It only gets them used to spending most of their time outside of it. They are under more stress, learn less, and are less happy. They may eat less and lose weight, but since they're a teenager now it's called an eating disorder instead of a sensory issue. They often melt down the second school is over.

It burns my cookies. Instead of transitioning to less sensory adaptation as children get older, we need to transition to children regulating their own sensory needs. They need to learn how comfort feels in their body and what tools they have to get there. I am 36 years old and I'm still working on "am I feeling listless because I am overwhelmed, or because I am bored?" If that's a struggle for me, it's obviously a struggle for a 12-year-old too. But it's so important to teach this, because at some point they'll be an adult and will need to keep themselves in their own sweet spot. And they may have to advocate for themselves about it. So at this age, we should be encouraging kids to understand their needs and ask for what they need. First from us, then from teachers and other adults. A child who can ask the teacher, "Can I please sit in the front, it is too loud in the back," is a child who will eventually grow up to say, "Can I work from home? I'm much more productive there."

Communicating Needs

This follows off the last one. Unfortunately autistic kids can sometimes be their own worst advocates. Some, of course, don't speak. Others can be amazingly articulate so teachers don't realize they don't know how to ask to use the bathroom.

I hardly know what advice to give, because communication difficulties vary so much and I'm only doing middling well at teaching this. Marko can ask to use the bathroom now, but he's constantly missing assignments in class and is terrified to ask the teacher for permission to turn them in late. A work in progress. And Jackie, for reasons I can't hope to understand, sometimes refuses to say "I would like some strawberry-kiwi juice, please," but will trace the letters SKJ on my stomach and expect the juice to arrive.

I think it's vital to accept every attempt at communication and encourage it. The last thing we want to teach is that efforts to communicate aren't worth it. We don't always know what is preventing a child from communicating in the way we might prefer. So refusing to comply until they communicate the way we want can result in the child getting frustrated and giving up. It is okay to become something of a telepath when it comes to our children's needs, detecting that "zzz" and a vague gesture toward the top cupboard means "raisins" or "I'm just going to change my clothes, no reason" means "I have had an accident and feel embarrassed, please play along." What we are teaching is that attempting to communicate is good and gets you things you want. Demanding "please" or clear enunciation often trips the stubbornness switch and they'll just climb on the counter and try to get their own dang chips.

When Marko was about four to seven years old, he refused to talk to any adults outside the family. He had a really pronounced stammer at the time, but even when it was important, he wouldn't even try. I finally found out--after years of this!--that he had noticed that adults in the family understood him when he spoke but adults outside the family often didn't, or didn't have the patience to let him finish his sentence. So he figured, why bother. It was considered "selective mutism" but what I call it is very sensibly saving his breath on people who might not listen. Once he went to school, he quickly overcame it because the adults at school asked him questions and waited and waited and when he finally did try answering, they listened patiently.

So always listen, even if the communication is a sign, gesture, tugging at you, sidelong vague passive-aggressive comments, whatever. And then after you've listened, you can suggest other ways. "You know, you can say 'strawberry kiwi juice' in words, I would have understood that one a lot faster." "Can you hand me your card next time instead of dragging on my body? I like that more." "Once upon a time, there was a little girl who peed her pants, and she decided to tell her mom, 'I had an accident, can you find me some fresh pants?' And her mom was not mad at all! The mom said, 'Thanks for telling me,' and got her some new pants." (This last is a real story that actually, to my shock, worked.)

When it comes to hard conversations, like talking to a teacher, our kids will need our coaching. I've sat by Marko and helped him draft emails to his teacher. I've sent him to go and talk to the counselor while also shooting off an email to the counselor saying, "I have sent Marko to you, please talk to him if he doesn't approach you." We don't expect our kids to be able to do things the first time without us holding their hands.

* * *

This list is obviously not exhaustive. There are a heck of a lot of other important things to teach autistic kids. But these are my main focus right now. I know that my kids will be on the way to building their own successful lives if they master these skills. None of these skills have to do with being less autistic, and all of them are about achieving their own happiness.

In another post, I hope to write a list of general tips about managing autistic kids. There are so many things I've learned along the way that baffled me at first. Parenting autistic kids is not mainly a list of hacks (which is why I decided to leave the other one in drafts and publish this one first) but I'm pretty sure we all need more hacks.

I...think I might be autistic after all?

 I have known I'm not quite like most people for years and years. For a while I identified as "highly sensitive," then as "probably sensory processing disorder." Whether any of this fits into the autism spectrum is a harder question. The autism spectrum is broad, not just in severity but in actual traits. These days, you don't need to fill out every trait for a diagnosis, just a certain number. The result of this is that you have autistic people that are far more different from each other than they are from neurotypical people.

I don't love this. Treating these disparate conditions as one thing means that my children, when I say they are autistic, are always assessed based on the most classic symptoms and then told they "must not have it that bad" and therefore don't need help. Jackie's speech has been tested and found normal twice, and it may disqualify her from special ed preschool this year. Because autism includes language delays and she has none. The teachers don't seem to be very knowledgeable about the other things autism can entail, like emotional dysregulation, lack of adaptability, need to be in control, difficulty playing with other kids. I like to think that in the future, autism will just be the broad umbrella, and we can have "type 1" for verbal delays and spatial genius, "type 2" for typical speech but spatial problems, "type 3" for social and emotional issues without the other things, etc.

But we're not there yet, and in the meantime I'm left finding a lot of autism stuff relatable and other stuff completely alien. There are autistic people who don't know how they're feeling (alexithymia) and I analyze to death everything I'm feeling. There are autistic people who are uncomfortable with things that aren't black and white, whereas I see so much nuance in everything I can't complete a personality quiz. Would I rather be in a garden or in a city? Well, wouldn't that depend on the mood I was in? Do people think of me as the life of the party? I don't know, I suppose I would have to ask everyone I know.

So I think I'm going to write a post listing out things that have made me think I may be autistic, or a little autistic, or on the trailing edge of the spectrum, or whatever I feel like I can get away with without being too inaccurate. Really, I would like a professional to tell me, but getting diagnosed as an adult, especially as a woman, is incredibly difficult. Not many people do it, and you pretty much have to do all the digging through your life and your brain yourself. There's no blood test or brain scanner or even convenient puzzle you can get graded on. (Perhaps there would be, if autism were one thing instead of like a dozen things.)

The reason I've always resisted describing myself as autistic is that I don't feel that I'm disabled. All the definitions of autism include that it has to be disabling, it has to interfere with your normal functioning. I do pretty okay for myself, so it just doesn't seem right to claim an identity belonging to people who need significant help. But I do feel that autism can't be about what you can't do. It's about the way your brain works, the things you need, the things that bother you. If you have the things you need, if your environment works well with your brain, you're not disabled, according to the social model of disability. And isn't that the goal for every autistic person, to have everything they need to accomplish what they want?

I'm realizing more and more, as I read stories of autistic adults, that I have had so many things they didn't have. I had a supportive childhood that didn't demand of me much that I wasn't able to do. I have chosen small, manageable social spheres. I have never lived alone. I have only once in my life had a job that wasn't handed to me based on connections. Most of those have not been full time. This works great for me, but it doesn't tell you anything about what I would have been able to manage with a less than optimal environment, if I didn't have so many privileges. 

Feelings

The first thing is my emotional regulation. I have always seemed to have more feelings than everyone else. As a kid I cried all the time, loudly. My mom once told me the reason nobody had any sympathy when I cried was because I just opened my mouth and bawled instead of trying to cry like a lady. I remember being confused. If I had control of what I was doing, I wouldn't be crying!

In the fourth grade the teacher nicknamed me "The Perpetual Frown" because I cried at school so much. (Bugger off, Mr. Wells.) In the fifth grade, my teacher took me into the coat room to ask if there was something wrong at home, if something was bothering me. I told her my uncle had died, which was true if several years out of date. I just felt like I had to have some excuse or she'd never leave me alone. Later, she dismissed me for lunch early and kept everyone else back. I assumed they were in trouble. In reality, she had told everyone they had to be nice to me because I was having a tough time and had no friends. Thanks for the thought, Mrs. Pfahl, but you might have predicted somebody would tell me everything.

In boarding school it was worse (because of the psychological abuse, obvs). I cried and cried. I learned to cry quietly, but I still cried all the time. I remember once I was expecting to get to sit down and eat dinner only to get pulled into the kitchen at the last minute to wash dishes instead. I sobbed and sobbed. I felt like my heart would break.

It was called, at the time, "emotional immaturity." I was told I would someday gain the ability to manage my feelings the way everyone else did, that I would be able to control them somehow. And I did stop crying all the time, after boarding school. At first it was mainly severe depression, but after that I felt like my feelings did settle down somewhat. It felt like there was a space between the inside of me and the outside, that I didn't have to let things out if I didn't want to. Or sometimes, I couldn't let things out at all. I don't really laugh when I'm alone. I usually can't cry even if I want to. But if I'm startled, I'll let out a reaction I didn't intend, sometimes a larger one than appropriate. Thanks to Zoom, I now know that I look extremely angry when I'm trying not to cry. That's not my favorite thing in the world.

Rigidity

I don't like the word rigidity. It sounds very negative, which is of course how it's perceived. I'd rather say that I love the things I'm used to, that they make me comforted and happy. You know how, after a long journey, you see the lights of your house getting closer and feel glad? I feel that about all my familiar things. I don't always think about how important they are, but this move has brought home to me how badly I function without them. It made me angry that the couch wasn't how it used to be. I had trouble drinking water because my favorite cup was lost in a box somewhere.

When I was younger, I was a lot more adventurous. My life was already very familiar so I felt willing to branch out. I think that's true of autistic people in general. Routines are comforting; if things are good, you don't need the same degree of comfort and are willing to be flexible. When you're having a hard time, though, every little change is going to be a big issue.

Sensory processing

The diagnostic guidelines barely touch on sensory processing, but to me they're almost the heart of autism. If you sense things differently, you'll react all kinds of different ways. And the sensory side of autism is the thing I relate to the most; I know I have serious sensory issues.

I'm hypersensitive to a broad array of things: textures, noises, smells. Some of them are very easy to explain, like loud noises or crowds. A lot of people don't like those, though most of them seem a little better at putting up with them. Others are just weird, like I get goosebumps all over my body if I even think about touching velvet, and my entire day was ruined once by King George's song in Hamilton. It just feels unsatisfying somehow? Like you have to keep singing it forever to get to a resolving chord but there is none. Ten years ago I loved pop music because it was devoid of those progressions. Now they're everywhere and I hate them so much.

I have two sets of clothes: the aspirational stuff I bought because it looked nice and I imagined being a person who would wear that, and the stuff I actually wear. The set of things I can wear keeps shrinking and shrinking. I basically live in cotton t-shirts (NOT cotton blend, UGH) and my gray elastic-waist shorts. I'm becoming intolerant to my only pair of non-ratty jeans because they slide down, but I also can't wear high-rise jeans because they make me feel smothered. I can't wear anything tight, especially on the armholes. I usually can't wear hats or scarves. It takes me about a month of winter to get used to wearing coats, and I sometimes try to get away with a light hoodie (pure cotton. no fleece lining) till it's below freezing. I don't just like being comfortable, I'm actively miserable when I'm not. I wouldn't even wear heels to my own wedding.

It takes me a second to process things. If I'm walking along the road, I walk slowly and look at everything. If I can't do that, I have very little notion what I saw or where we've been, and I end up feeling stressed. When I was a kid, I tried various sports, but I just can't keep my eye on the ball. It goes too fast. I got hit in the head with balls way too many times. I can't play any video game with a first-person camera; I have no idea where I am. I can't listen to audiobooks. Watching TV, I miss about half of what is said unless I put the subtitles on. Walking around the house, I constantly bump myself on things. I'm scared to go downstairs holding a laundry basket because I can't see my feet.

This is the part that severely limits what I can do. Things I can't do, or find so unpleasant that I never do, include: concerts, fairs, movies in the theater, going multiple places in the same day. When we were showing the house and had to be out all day, I was miserable. I have never liked going to work. Only now that I have a job from home, I'm discovering I don't dread going to work or collapse in an exhausted heap when I get home. Teaching is especially exhausting; I don't think I could ever go back to it. In college, both times I tried to add one (one!) extracurricular on top of my classes, I got sick and had to quit.

Executive function

These days, the internet is full of stuff about executive function, to the point that I'd almost wonder if anyone is actually good at it. Except that my husband is; he's like my executive function doula. He knows when the bills are due and when the car needs to be inspected and he never, ever loses his keys.

That's, uh . . . not me. It took me two years once to call the dentist after my tooth started hurting. I carry tons of to-dos around inside my head all day, because I can never manage to write them down. I drop balls all the time. It was my biggest flaw as a teacher, forgetting who had missed a day and whose parents wanted me to call them back. I didn't plan my lessons, I winged them all. In school, homework sheets exploded out of my backpack, but were somehow never there when it was time to turn them in. When our notebooks were collected for a grade, my literature notes were just a title and some doodles. I leaned hard on raw intelligence to succeed in school despite never knowing there were tests coming up and writing all the papers the day before. But once you're an adult, raw intelligence doesn't count for very much. You have to actually remember what day yearbook money is due.

I'm getting better at this, because I have to, but it's still one of the biggest challenges of my life. I constantly miss work meetings I am supposed to zoom into; my boss is luckily tolerant of it. I was supposed to call the elementary school after two-thirty on Monday; it's Wednesday, and though I remember it now, I wouldn't lay odds on me remembering after 2:30.

My current job is so great. It might take me an hour to get in the zone to do anything, but once I'm there I pound out an article in a couple hours. I might, however, forget to eat. When working on a novel, I used to go five hours or longer without a break. I don't have trouble with focus if no one interrupts me. I have a lot of trouble switching from one task to another. Sometimes dinner is late because I was doing a puzzle, and I knew it was time, but I had to fit one more piece, and one more piece, WHAT, it's six pm.

Social skills

This is the thing that always gave me pause. I can't be autistic because I function really well socially. Don't I?

Well, I admittedly didn't in school, but that was because I was homeschooled. Everyone somehow picked up on me being different and was mean to me. Complaints I remember: that I talked to myself, that I talked like the robot voice of a talking car, that I dressed funny, that my hair was messy, that I smelled bad. These are all, admittedly, common autistic things.

One time all the cool kids decided to be nice to me and invite me to play Truth or Dare. I assumed that I had finally been there long enough that I was going to be accepted, and joined right in. Turned out they just wanted to quiz me about stuff like who I liked, so they could torment me about it. Was that a lack of social awareness?

In high school everyone was nice to me, because it was the rules. I knew I was not one of the coolest people, that the consecrated had decided I wasn't "leader-type," and I'd been told more than once I talked too much, hogged the conversation, was too loud. Other girls found me funny and happy and charming, but a little weird. The consecrated made it their mission to make me normal, including a lot of explicit teaching about hygiene and hair and fashion and conversational turn-taking.

College was great for me socially. You'll never find a denser concentration of weirdos obsessed with all the same things I was at the time. I had so many friends. I couldn't stay up late like they could, but I always had someone to hang out when I wanted to.

I have not really made friends since then. My friends are all my old college friends, or people I didn't hang out much with at college but at least knew. I keep trying to make other friends, but it never seems to work for very long. I have tons and tons of online friends. In person is so much harder, not least because of my other challenges. Hanging out with kids is a very hard sensory experience; you're juggling attending to the kids and attending to the other person, and switching my attention like that exhausts me and makes me itchy. Hanging out without kids involves a lot of advance planning and executive function. I say, "I'll check with my husband and see if he can watch the kids that day," and then I don't.

I don't know if I make eye contact right. I do look at people's eyes briefly and then look away. Isn't that what most people do? I remember getting in trouble for disrespect when I made eye contact with a teacher who was chewing me out for something else, and getting yelled at by a girl who said I "had a staring problem." So I guess I'm a little afraid of looking at people too long. I remember one spiritual director always looked straight in my eyes and it was the very worst thing in the world.

I'm bad at turn-taking in conversations. I spend a lot of effort trying not to talk too much, but dead space makes me anxious so I tend to leap in and fill it. I know I used to just talk a mile a minute and people couldn't get a word in. In groups of more than two, I really struggle. The gaps you could jump into are so tiny and gone so fast. And they change topics all the time! I hate having something interesting to say, but it's about something three topics ago because the conversation wandered. I want to talk a subject to death before moving onto the next.

A lot of the things autistic people say on this, I don't relate to. I very much like small talk, at least small doses of it with strangers. I'm always anxious in public, and if a kindly stranger tells me that I have a lot of children, it cheers me up somehow. Like oh! this person is being friendly with me! I guess I can survive this after all! I hate mask wearing because nobody smiles at me. I am not blunt. I lean hard on etiquette and social scripts; if you ask me how I'm doing, I would sooner die than say anything other than some version of "oh, doing all right, how are you?" Saying things that might upset people is very hard for me. I read a lot into what people say, and I would ten million times rather hint that I could use a hand than ask.

This part is the hardest for me to accept. Am I still a weirdo, and it's just that people are too nice to point it out now? Am I missing something everyone else is getting? I spend a lot of effort understanding people and trying to fit in. I don't want to admit I'm not good at it.

Stimming

As a kid, I used to chew on my hair. So my mom cut my hair, and then I chewed my nails. Then I got braces and I didn't have a fidget. In boarding school being fidgety was very much frowned upon. I don't think I really stim anymore. I do sometimes play with my eyelashes or sway back and forth when I'm reading. But this is one that isn't really such a big noticeable thing with me. Whereas Marko is so fidgety that he can be chewing on a random piece of plastic, pulling on his hair, and dancing around the room at the same time.

When I'm very stressed, though, like at the grocery store, I've started shaking my hands at the wrists, like I'm limbering up to play piano. It seems to shed a little of the stress somehow. I'm not really doing it intentionally, but I could stop if I wanted.

So am I or not?

I really don't know. This feels like a lot of reasons I am, when I lay it out like that. But getting a diagnosis sounds like an insurmountable burden. How would I find someone who even assesses adults? Would I have to call them? Get childcare? Make an appointment? And what if then they were like all the people I've dealt with for my kids, who say "well, they're smart, they're doing fine" and I hear "why are you wasting my time?"

I suppose what I should do is just be gentle with myself. Try to understand myself and give myself space for my needs. I do a lot of that already, which is why I don't feel like I'm suffering. I don't put myself through things I know I won't like. I don't commit to things I know I would flake on. I build a lot of down time into every day. I just need to try, as best I can, not to be ashamed of myself for needing to do that. Sometimes I feel really bad about the things I can't do, the things I've failed to do. I don't need a word for what I am to know I'm not choosing to struggle with things.

But would that be easier if I just said, hey, I probably have autism? If I joined autism groups and said, yeah, that's me?

You, the five or six people who still read this thing, know me pretty well. What do you think?

The hardest part

I hear a lot about how hard it is to be an "autism parent." And it's not wrong; parenting a child with autism is playing on hard level. There are extra things to worry about and appointments to make. Potty training may take years. Sleep might be disturbed for a decade.

But the hardest part of all, I think, is the judgment of other people. Autism looks a lot like bad behavior, especially to an older generation that prizes politeness. Autistic children scream, cry, fail to sit still, won't say please and thank you, or don't play well with other kids. And so bystanders tend to look on and say, "That child is a bad child, where are his parents? Somebody should try raising that kid."

It's easy enough to shake off from strangers. But the same comes from friends or family. If I vent about some difficulty I've had, there's always somebody ready with the standard parenting advice: have you tried punishment? Have you tried boundaries? Have you tried, you know, actually raising your kid? Because from what you're saying about their behavior, it looks like you don't know what you're doing.

I went through all of this with Marko, and because I didn't have a diagnosis for so long, I often just censored myself altogether. Better not to even say how he was acting or what we were struggling with, because I knew people would blame me. In public, I was ready to defend him at all times, because people constantly tried to talk to him and would get miffed when he didn't respond. I knew that I acted differently from other parents. I knew that not all parents went to such huge lengths to keep their children happy. And I knew that I would get judgment for behaving that way.

When we were having the autism assessment, everyone was so kind. I asked many times, in worried tones, whether it was my fault. Had I been spoiling him by not subjecting him to environments that upset him? Had I hindered his education by not pushing harder at writing and reading? And they were so reassuring. They said that I had clearly sensed what kind of parenting he needed and provided it. That he was doing really well and the reason was probably me and my above-and-beyond parenting. I could have cried. All those years of bending over backward for him, being sure I was screwing him up because everyone seemed to think so, and being told it wasn't me. That I had been doing things right all along.

It's on my mind a lot because the same dynamic is happening with Jackie. I don't know yet if she has autism or anything you could diagnose. Maybe not, because as I've mentioned, autism is diagnosed mostly as a social deficit and Jackie is plenty communicative with us at least. But I do know she's not like other kids. I know that something is up, and if there's no name for it, that changes nothing about what she needs.

She needs about three times the bending over backward that Marko did. Everything in my entire day is controlled by Jackie, what she will tolerate and what she won't. I can't wear a sweater in her presence. A shower requires significant advance planning. Leaving the house may require half an hour of preparation and outfit changes and toy collecting, and even then she might need to be packed in screaming. I'm trying to wean her right now and it's so hard. She just gets upset by so many things, and there are so few that calm her down.

Yesterday I went with her to a party, and like every time I try to socialize with her around, she didn't like it much. She climbed on my head, flipped upside down, made dozens of ridiculous and contradictory demands. By the last hour she just asked to leave, over and over.

It was embarrassing, seeing her act like that while, in the same room, another three-year-old was completely entertaining himself. And knowing that many of the other adults have high standards for kids, and maybe were thinking Jackie was spoiled, that it was my fault, that kids shouldn't be so needy. Nobody said anything, this time, but it was hard to avoid that feeling of judgment.

Even my other kids sometimes say I let her get away with too much, let her have too much of what she wants. All I can say is that I've tried it before and her behavior gets ten million times worse.

Online, occasionally I vent about what a challenge she is. How much I would like to be able to just attend a school meeting or throw in a load of laundry without having to work out how to get Jackie to handle it. How tired I am of nursing her, three years in, or how much I want to sleep through the night before I'm old. Most people, to their credit, empathize. But every once in awhile someone does judge and it hurts so much. They'll say: well, with my child, I try saying no to them. Or: you're the mom, if you are tired of nursing just stop. Or: at her age she can handle not getting what she wants.

It tears me down so much, every time I hear this. Because the undercurrent is that it's my fault. That I took a normal child and spoiled her to the point that she cannot handle existing in this world. It's an awful thing to feel, and it takes hold so much because it hits a tender patch of self-doubt inside me. Because I do worry it's me. I do worry I've spoiled her. I do worry that if somehow I had been better, she could get up in the morning and go down and eat breakfast without having a wailing meltdown because I wanted to drink a cup of tea. Heck, even if it is purely her brain, maybe it's still somehow my fault because I was such a mental-health wreck while I was pregnant with her. Or if it's genetics, isn't it then my fault for getting pregnant again?

I took her to her three-year-appointment this week. I dreaded it for weeks ahead of time. What if I was honest about our struggles and the doctor said, try actually parenting her? What if I tried to explain and the doctor brushed me off and said all toddlers have meltdowns sometimes? Maybe I should just keep all that to myself and pretend she's potty-trained and weaned and sleeping through the night.

In the end, I chose to be honest. I already had Jackie thrashing in my arms and demanding to leave the room; how could I pretend I had no concerns? And the doctor was extremely kind. She said it sounded like I was doing all the right things. She said if I have concerns, it's worth it to get an assessment. She gave me a referral to an occupational therapist, saying it sounds like I need help now and not months from now when we finally get in with the psychologist.

I could have cried. After all the judgment I've had, the surprise from people when they see how she acts, and the well-meaning "well did you try . . . " comments, there is nothing in the whole world that means so much as "it sounds like you're doing all the right things."

Because when it comes down to it, the judgment is the hardest part of the whole business. Not that I can't go to social events; not that I don't get sleep at night; not the occasional days where she cries the whole time. It's the fear that I caused it, and the judgment I get from people who assume I did. Other parents get to vent about their kids, so long as everyone's kids are doing more or less the same stuff. And if your child is extra hard, you need the support of other people all the more! But if your child falls outside the norm for whatever reason, it's hard to find safe people to vent to.

Listen to a special-needs mom today, without offering any advice. It'll mean the world.

Are we getting autism wrong?

Imagine you asked what a heart attack is, and I answered, a disorder characterized by rubbing your arm, moaning, and falling down on the floor.

You'd be a little puzzled, because this definition gets us no closer to what a heart attack is, what is happening in the body.

So you ask, what's the cure?

I answer, well, we've trained all the patients out of rubbing their arms and moaning, but they keep falling over whatever we do. I guess the only solution is tying them upright!

That's kind of where we are on autism. It's described and defined, not by the interior workings of the mind, but by the most noticeable symptoms: social problems, stimming, meltdowns. And the available therapy, which is mainly ABA, focuses entirely on extinguishing behaviors rather than making the person feel any better. They teach social skills and train a child out of stimming, but weirdly the meltdowns only get worse. Or the person starts experiencing anxiety and depression. We know autistic people, especially those considered to be "high functioning," have an elevated suicide risk.

This way of defining autism also keeps girls from being diagnosed. We know that autistic girls are better at mimicking appropriate social skills. So people say, well, that's not autism then. Autism includes poor social skills, so if this girl has figured them out on her own, she can't be autistic.

Women also react to heart attacks differently, but in this case we are told that heart attacks may not involve arm pain and to learn the signs of heart attack in women. What if we considered autism the same way? Rather than saying "the symptoms are different, therefore it can't be autism," maybe we should ask what the symptoms of autism look like in women.

I don't think I can clearly and briefly define autism from the inside. I can say, for sure, that there are sensory processing differences. And that autistic people's brains seem less generalized; they'll often be overpowered in one area and underpowered in another. These two things cause social problems, because social skills require coordination of a lot of different skills at once, and most autistic people will have trouble with at least one of those. But some autistic people will learn to manage the social skills problems early on, and thus be overlooked at truly autistic.

I'm a believer in autism research. Unfortunately, most of the research being done right now is focusing on all the wrong things: either how to extinguish behaviors, or what causes autism in order to prevent it. The first is a problem because changing behaviors doesn't cure autism, and may make a person feel much worse. The second is a problem because autism is almost always genetic, and the only "cure" for genetic ailments at this point is abortion. So while there's nothing wrong in theory with pinpointing specific genes, it becomes a massive problem when people are so scared of having an autistic child they'd demand prenatal testing for it.

Instead, the research I would like to see is more about what is specifically happening in the brain. What does overstimulation look like, and what helps? What interventions actually work in lowering anxiety and stress in the brain? Marko has just turned a corner from a four-month bad spell where he was angry and explosive all the time, and suddenly he's happy and excited again. He's just as autistic as before, but something did change. Could science help us understand what flips this switch in Marko and how to give him more good days?

Unfortunately, society just isn't there. Most people still see an autistic child demanding a green shirt every day or flapping their hands and say, "How do we make them look and act like a neurotypical child?" They're not asking how to help an autistic child live their best life. And until the people giving the money, organizations sponsoring the research, scientists, doctors, and therapists are all centering the well-being of the autistic person, we're not going to make much progress.

It's not "nerd blackface," okay?

I really love Big Bang Theory.  I recently watched the 11th season (hooray for the library, which had it) and liked it as much or more than the rest.  However, I've heard more than once that it is a bad show and I should feel bad for liking it, because it makes fun of nerds.

My opinion is that comedy always makes fun of people.  Some comedies make fun of bumbling dads and control-freak moms.  Some comedies make fun of young, single New Yorkers.  To have a comedy about somebody means that person or group gets made fun of sometimes.  My favorite other comedy is The Unbreakable Kimmy Schmidt, which makes fun of just about everyone: black people, gay people, Jewish people, Asian people, rich people, poor people.  And yet all these characters are humanized as well--they have moments when you realize that even though they are complete stereotypes, they are people and can rise above your expectations.

Of course there could be mean-spirited comedies, where the same people are always the butt of the joke and never humanized or allowed to do anything good.  I can't think of a comedy that is like this because I watch so few, but I know I've seen reality TV that was about mocking people.  It's ugly and mean, and I can certainly entertain the idea that a comedy is too mean to be a good show.

But is Big Bang Theory like that?  I don't see it.  Every character has a chance to shine as well as get laughed at.  Pick-up artist Howard gets a chance to explain how rejected he feels because women think he's too short and needy to date--and to eventually learn how to treat women.  Raj opens up about his shyness and is sometimes a great friend.  Leonard, we are meant to sympathize with a lot as the most "normal" of the bunch.  And Sheldon . . . we are drawn into his character more than any other.  Does he do weird and often inconsiderate things?  Sure.  But he also gets a chance to explain his feelings.  In one episode, he makes Leonard wear a scratchy sweater for days to explain what it's like for him when something isn't finished.  He isn't being picky, he's really having a hard time, and we are meant to understand this.  And of course he slowly grows as a person and accomplishes things we never would have thought possible.  All of this humanizes nerds by showing us the stuff they've gone through, the things they think, the ways they change.  They're real characters, never just the butt of a joke.

Then, of course, there are the other characters.  Penny is a "cool girl" who gets mocked just as mercilessly as the nerds.  Amy and Bernadette are just as nerdy as the men but aren't into their fandom, and they get teased too.  Occasionally "jock" type guys appear on the show and are mocked too.  It seems pretty equal-opportunity in its humor.  If I could change one thing, I'd have more women who play D&D and hang out in the comic book store . . . because geek girls exist despite men always telling us we don't.  But they do appear from time to time.

Maybe I'm missing the point of the criticism.  Maybe "nerd blackface" means, "non nerds are playing nerds and that's as offensive as white actors playing black characters in movies."  But "nerd" is not a race.  It's a social designation.  Part of an actor's job is portraying different kinds of people.  How fine-grained is this?  Can a biologist portray a physicist?  Can a Star Wars fan portray a Star Trek fan? 

Of course, even then, this wouldn't condemn Big Bang Theory, because the show is not a bunch of non-nerdy actors portraying nerds.  Several of the actors are really into the stuff they're pretending to be into.  Amy is played by Mayim Bialik, who actually is a scientist.  And many of the guest stars are nerdy heroes, like Stephen Hawking or Bill Gates, playing themselves.

Basically, I don't understand how you can criticize the show without saying, look, you can make fun of anyone else on the planet, but not nerds.  Nerds are permanently off-limits for comedy.  There is comedy about black people and Asian people and gay people, but nerd comedy is a bridge too far.

But! you might say.  Isn't Sheldon's character making fun of the disabled?  He's obviously on the autism spectrum, and he's super annoying!  Everyone is always talking about how annoying he is!

That's actually a big part of the appeal of the show, for me.  Yes, Sheldon has autism (undiagnosed).  He's brilliant, but very routine-oriented and he puts other people out a lot, following his routines.  Sometimes they get impatient and even mean to him because of it.  Other times he's able to show them how important their tolerance is to him.

I guess what I love is that autism isn't treated respectfully, in hushed tones.  Sheldon isn't babied or treated like a hero for existing.  Like every other character, he's mocked for his foibles but has time to shine as well.  Like anyone else, autistic people can be jerks sometimes.  Sometimes their challenges become a challenge for the people around them, and we have to work hard to be patient.  Or else we totally fail to be patient.  That's a thing that happens too, and BBT isn't afraid to laugh about it.

That's what makes it much more meaningful when Sheldon achieves things.  He is one of the best scientists of the batch (equalled, maybe, by Amy) but in his personal life, he really struggles with basic milestones.  Yet, one by one, long after the others, he reaches them.  And though humor surrounds them, we have some serious, real feelings in those episodes.

The last reason I find the show's portrayal of autism to be so important is that real autistic people I know have learned social skills from it.  We can see both Sheldon's point of view and the other characters', so an autistic person watching can think, "Oh, this thing he's doing, which makes sense to me because I do it too, is causing these problems for himself or others.  And here's the solution he discovers by the end of the episode!"  Amy, in particular, is good for this.  She's able both to empathize with Sheldon and to explain the social tactics that will get him out of his mess. 

Should BBT be the only show that ever has nerds in it?  Obviously not.  We should include nerds in more things than comedy shows that make fun of people.  But . . . there are lots of shows like that.  There's Star Trek.  There's Doctor Who.  There's Bones.  Likewise, there need to be lots of characters with autism on TV, so people understand that all autistic people are not just like Sheldon -- they're unique individuals with their own foibles and talents.  But that's hardly BBT's fault.

In short, it's not an offensive show.  It's a comedy show like many others.  If you don't like it, I don't care.  Go somewhere and watch something else, and don't yuck other people's yum.  I love it and am not going to stop loving it just because you don't find it funny.  I like to hear people like myself and my friends and family tease each other.  I like to watch successful scientists tell stories of their awful childhoods--that are over-- while they have fulfilling lives complete with romance and money and scientific discovery.  As a nerdy person myself, it encourages me and makes me smile.  I think that's about as much as anybody can reasonably expect of a sitcom.

7 things to be aware of this Autism Awareness Month

So, April is autism awareness month.  I imagine everyone is pretty well aware by now that autism exists.  But there is still a lot of knowledge that people aren't aware of, so I thought I'd put together a post of things I wish people knew.

1.  Autism is a spectrum.  What that means is that there is a wide variety in how severe people's delays are -- and even what delays they have!  This is even more true today than it used to be, since Asperger's was redefined as a subtype of autism.  If you know an autistic person, try not to make assumptions of what all autistic people are like based on that one person.  Some autistic people can speak, for instance, while others can't.  Some have excellent fine motor skills, while fine motor skills are Marko's biggest struggle -- he can barely write at all.  Because of all this, there's no secret to dealing with autistic people in general, except perhaps to be patient and adaptable while you find out how that particular person can communicate with you the best.

2.  Autistic people grow and change over time.  I was reluctant for a long time to admit Marko had autism because I thought it meant he'd never grow out of the behaviors we were struggling with at the time.  I didn't want to give up hope that it was just a phase.  And you know what?  It was autism and it was a phase.  Autistic children may reach some milestones later than other kids, but it doesn't mean they will never reach them.  Some autistic people finally grasp a key concept or skill in their twenties or thirties that opens whole new opportunities for them.  An autistic person will always be autistic, but with patience and hard work, they can achieve things others thought they never could.  A child who was completely nonverbal till five or six might grow up able to live independently and start her own business at thirty.  So never assume what someone's going to achieve based on what they're able to do now.  And never, ever assume an autistic adult -- even one with very obvious delays -- is like a giant child.  Adults, regardless of disability, are still adults.

3.  Autism can coexist with high, low, or average intelligence.  It's wrong to assume that autistic people are retarded or dumb simply because they are struggling in specific areas -- they might be perfectly intelligent and simply have trouble communicating their thoughts to you.  On the other hand, it's also wrong to assume that all autistic people are super-geniuses like in the movies.  It's very difficult to test an autistic child's IQ at all because of this.  Marko tested at 104, but we were told this result was completely invalid because his vocabulary was so high and his scores on a shape-rotation test were so low.  Is he a genius or not?  Well, does it really matter?  Like the rest of us, he has strengths and weaknesses.  And it's best never to assume based on a person's performance in school or on an IQ test -- those may or may not assess the person's strongest skills.

4.  Autism isn't an epidemic, and it isn't caused by vaccines.  Diagnostic criteria have expanded hugely over the years, so more and more kids qualify for a diagnosis, but that doesn't mean more kids have a disability than before.  What it means is that more children who before were labeled "difficult," "disorganized," or "retarded" are now able to access specific help for autism.  I wrote about the vaccine-autism thing before.  Suffice it to say that Marko had autism before he got a single vaccine.  He inherited his autism from his dad and me, who were carrying the genes for it.  If we really wanted to prevent autism, I suppose we should prevent nerds from dating each  other . . . but what kind of terrible world would that be?

5.  Autism Speaks is controversial, and a lot of autistic people don't like it.  I heard it compared to an organization called "Women Speak" which was run by a board made up of only men.  Because they're not letting autistic people advocate for themselves, they've blundered into some really offensive statements, and the money donated doesn't necessarily go to support autistic people.  A better charity is the Autistic Self-Advocacy Network.

6.  Another controversy is what sort of therapy is best for autistic kids.  Some people insist ABA (Applied Behavior Analysis) is absolutely essential, while many autistic adults say it was traumatic and unhelpful for them.  The real question is, should the goal of therapy be to extinguish all external signs of autism -- training kids to stop any behaviors the rest of us find annoying, such as fidgeting -- or to help the child overcome any barriers between him and his own goals?  This is extra difficult when a child can't communicate what his goals even are.  As a parent trying to navigate this with my child, there's a lot of listening and empathy required . . . and sometimes some tears, either mine or Marko's, as he struggles with something that's difficult for him.  The important thing, as I see it, is to equip him for his own life -- trying to give him all the tools he'll need to graduate school, live independently, and achieve any dreams he has.  If he does all this while remaining quirky and obsessed with fantasy . . . all the better.  That's part of who he is.

7.  My kid isn't badly behaved, and he's not defective.  He's dealing with bigger feelings than the average kid, with less emotional regulation, and he's doing pretty well.  He's got lots of talents and a ton to offer the world -- not that his worth would be any less if he didn't.  Sometimes I worry that people will look at our family and think I'm too permissive, that I need to somehow make my kid look like their mental image of how a kid his age should be acting.  But more often than not, people take the time to engage with him, to listen to his obsessions, and to make an effort to enter his world.  And I love every single person who does it.  I know they have to put a little extra work into getting to know him, but they are rewarded with a chance to know a sweet, quirky, intense kid.  Getting to know autistic people is always worth it, just like being the mother of an autistic child is worth it.  I wouldn't trade him in or send him back.  I love the trip he's taking me on, and every person who joins us for the ride is very welcome.

Teaching an autistic child about consent

Lately I've read a lot, and I mean a lot, of comments about rape and rape culture and consent and victim blaming.  One comment that has stayed with me was something like, "I'm not worried about my sons, because I have taught them about consent."

And it bothered me.  I mean, I'm sure we would like to believe that all rapists just haven't been taught about consent.  Maybe they picked up toxic attitudes toward women from their parents, or maybe no one ever talked to them about it at all.  But it's possible that the parents taught them about consent and they ignored the lesson.  People have free will.

Still, it's definitely something I'm trying to teach my kids about all the same.  Certainly it's a conversation we need to have, and more than once.

But autistic children are an extra challenge.  Normally I completely reject defenses of rapists that include stuff like "maybe he just couldn't tell she didn't want that!" because most of us have the basic ability to read other people better than that.  But autistic people struggle.  I want to communicate consent without terrifying my kid to the point that he'll never approach someone he's attracted to!

Here are a couple of reasons why autistic people might struggle with consent:

• Flirtation and romance often are heavy on subtext -- and subtext is a second language for them.
• They learn a lot of social skills from TV, where they can watch a scene over and over and learn how people act -- but Hollywood has creeptastic ideas about what women want.  I do not want my son to treat women the way Han Solo or James Bond does.
• They may internalize an idea that "asking permission is unromantic" because it rarely happens that way in fiction -- but asking permission with words is sometimes the only way they can get a clear answer.
• They internalize rules that are clear and spelled out verbally, but very often the rules we teach our children ("don't have sex before marriage," for instance) don't include consent, because we think it goes without saying.  With autistic children, nothing ever goes without saying.  There's an autistic guy I've talked to online before who explained that all non-procreative sex is rape, while all procreative sex within marriage is okay.  Why?  Well, because the Catholic Church says sex must be within marriage and procreative, but it doesn't talk a lot about consent, so he just sort of ... glossed over that part.
• People often fail to obtain consent from autistic children.  Autistic children are often put through therapy where they are forced to hug, touch, or make eye contact when they are uncomfortable.  I read an autistic person's account of how she got in trouble for taking off people's headphones to talk to them.  Her complaint was that her teachers and parents always yanked off her headphones without asking, so she thought this was an okay thing to do.  Autistic people long for consistent rules -- they will treat others the way we treat them.

So how do we overcome all this?  How do we teach our children not to rape, to recognize when they are raped or assaulted, and at the same time not make them afraid of relationships?

Spoiler: I don't know for sure.  My kids are young still, and none of even them know yet where babies come from.  When we get to that point, I'm almost certainly going to need to enlist some help.  But we're laying the foundations now, and I can tell you what we're doing.

First lesson: Your body is yours.

I'm trying to respect their own wishes.  This isn't even possible all the time, because I do have to wipe their butts (yes, all four of their butts are still in need of my skills from time to time, moan moan) and make them get in the car.  But I try to let them have some choice in any matter involving them.  You know, blue shirt or green shirt, get in the car now or in two minutes, that sort of thing.  That paralyzed Marko when he was two and three years old, but now it makes a big difference.

I don't always ask Marko before hugging him, because he usually does like it, but sometimes I doublecheck to be sure.  I want him to know he can always say no.  That's doubly true with people outside the family, whom he usually does not want to interact with at all.  I have started pushing him more to say hello or look at people when we meet ("so that they know we like them and are happy to see them") but touching is always optional.

Second lesson: Not everyone likes the same things.

I try not to appeal to what is "reasonable" or "the only way" when talking to Marko.  I don't say, "That food is delicious," when he's saying he hates it, I simply say, "I know you don't like it, but you finish you will get dessert."  (Yes, I used to be strongly against this approach, but as he's severely underweight, we have to do it this way.)  I don't say, "It's obnoxious to be singing all the time," although it totally is, but instead, "I am tired of all this singing and would like some quiet, could you either stop or go somewhere else?"  My point here is to try to get him to understand subjectivity, that there's no wrong or right answer sometimes.  What one person loves, another hates.

Marko learned not to hit (most of the time) by about four years old, but he's learned a whole arsenal of other tricks.  He'll lean on you really hard, or hug you too tight, or make a loud noise in your ear -- anything to show he's mad without breaking a rule.  So we've talked about how the real rule is not to touch anyone in a way they don't like, and the kindest thing is to do things they do like.  He's actually started explaining this to me, so I know we're getting somewhere.  He knows that the way you show kindness to Miriam is to share toys and let her join in, while the way to show kindness to Michael is to let him have some control of the game they are play together.  And tickling, hugging, or kissing a child who isn't liking it is treated the same as hitting -- he must apologize if it's by accident, and have a time-out if it's on purpose or he refuses to apologize.  (I never made him apologize before about six years old, because he simply didn't get it.  Now he does, but it's still a bit of a struggle.)

In short, there is no rule that will tell you what behavior is always appropriate.  Appropriate behavior must be behavior both people are okay with.

Lesson three: Nonverbal communication counts.

Marko's younger siblings don't always communicate clearly, which makes them a great object lesson about unspoken consent and refusal.  For instance, if he's playing with the baby, I point out the signs that show that she is having fun, and the signs that she is not.  "She's pulling away, I don't think she wants that hug," versus "Look at her laughing! She loves that!  If she could talk, she'd be asking for another tickle!"

Miriam can talk, but she doesn't always remember to, so we have the same conversation.  "Look at Miriam's face.  See how she is shrieking at you?  Do you know what it is she didn't like about what just happened?  Let's try asking her."

Lesson four: Consent can be withdrawn at any time.

Marko gets upset sometimes when the rules of the game are changed on him.  He just figured out Mama likes hugs, how can she stop wanting hugs after the 43rd consecutive hug?  But that doesn't obligate me to play along.  I can simply say, "You know, normally I love hugs, but I am done with them for awhile.  Come back later."

Likewise, Marko is a lot more willing to play games that push his limits a little (like John's scary monster game) if he knows that when he says he's done, it stops.

Lesson five: TV is not reality.

At this point, most of the TV the kids watch is designed for them and has lessons appropriate for them.  But I still pause from time to time to point out stuff.  "When Rainbow Dash says, 'Why are saying I'm angry? I'm not upset!  And I am NOT ANGRY!' do you think she is telling the truth?  Why do you think she's pretending she's not angry when she is?"

As they get older, I'm going to be riding the pause button a lot harder.  Marko needs to be explicitly told what is like real life and what is only in shows.  He needs to know that when male characters kiss and grab their female friends, in real life, the women might not like that.  We can talk about how you might know that someone wants that (for instance, they said so).

This will make me the obnoxious mom, but you gotta do what you gotta do.  I'm probably going to encourage him to watch sitcoms and other "girl" shows with me, because they actually teach a lot about real social situations in a way that Marko's favorite genre (fantasy) usually does not.



So that's what I've got so far.  Do you have any more ideas?  What are good ways to help autistic children practice reading other people's wishes and standing up for their own?

How neurotypical am I?

I said I'd write a post later about autism and me, so here we are.  It's understood by scientists that family members of autistic people often have some of the same traits, known as the "broader autism phenotype."  It's not Asperger's; we're talking even less autism than that, a level that wouldn't be diagnosible as anything.  So it's not like this discovery has clinical significance, it's more that it sheds light on the genetic origins of autism.  And I think it should be more broadly known, because it can cause parents not to seek a diagnosis for their child's autistic behaviors, because "all the kids in my family are like that!"  Certainly that was a reason I wrote off so many of Marko's behaviors, like stammering, fidgeting, and massive meltdowns -- that's pretty common stuff in my family of origin.

My knee-jerk reaction to the question of whether I have any autistic traits is "of course not!  I'm the normal one in my family!"  And this is true.  My brother was always the "space alien" and I was the normal child.  He couldn't sell candy for a fundraiser, so I sold his candy for him.  He claimed not to experience emotions; I had lots and was very introspective about what emotions they were.  I also have always been highly empathetic of other people's emotions.

However, not all that stuff is exactly defining of autism.  Being unemotional or unempathetic isn't an autistic trait -- though some autistic people have trouble identifying which emotions they or others are experiencing, and do not always express their emotions in a way others understand.  Even that, though, isn't characteristic of everyone on the autism spectrum.

I definitely do have sensory processing problems and have all my life.  I once tried writing out a list of all the sensory things that I can't stand and the list went for pages.  Stuff like cutting my nails, touching velvet, being jostled in a crowd, licking a wooden spoon, driving through partial shade so the sun flashes in my eyes, loud noises of almost any kind.  But most of my family is the same.  I initially said we were "highly sensitive" and this is true, but I think it does tend more to the "disorder" side because it's not just sensitivity, but trouble processing and distinguishing sensory data.  When I pay attention, I realize that I'm not actually distinguishing sounds (for instance) any better than anyone else -- they just bother me more.  And sometimes they bother me because I'm not distinguishing them well.  For instance, one of the reasons I hate the phone is because I often have trouble making out other people's words, and the focus I have to put in to understand the other person taxes my brain and makes me feel annoyed, especially if there are other distractions around.  Another issue is that I can't catch a ball well at all.  I track the ball very well when it's far away from me, but when it's close by and moving fast, it's like it disappears -- I can't see it for a second, and then it hits me in the face.  I cope by tracing the trajectory of the ball and guessing where it will be, but it doesn't work if things are moving and changing quickly.  I suck at basketball because I'm unathletic, but I suck at ping-pong too just because it ball goes too fast.  I think this is true of most of my family (with the exception of my one unusually normal sibling), because we are terrible at ball sports of all kinds but have done well at things like running, wrestling, and lifting weights.

But as far as I can see, no one has studied sensory processing problems in the parents of autistic children.  The studies currently done on the broader autism phenotype focus on language and social problems and excessive rigidity.  I have never had any kind of language delay.  I talked at the normal age and talked a lot.  I did have a stammer for awhile (which reappeared after boarding school for a few months).  And I wouldn't call myself rigid; sure, I like to put on my right shoe before my left, and to have my mornings and evenings go more or less the same way, but if you surprise me with an outing to a place I've never been, I'll generally be happy with that.

But social problems .... well.  How exactly do you tell if you have social problems versus social anxiety or introversion?  I know I like small groups better than big ones; so do about half of people.  I know I get very nervous before meeting people, but so does everyone.  What I really want to know is whether I am actually bad at social stuff, and I can't know that because I can't see what other people think of me.  I've reached an age where, if people think you are socially awkward, they don't tell you.  I took an Asperger's quiz the other day and it asked if I often miss social cues.  Well, how the heck could I know I missed it, if I missed it?  I don't know it ever happened if I missed it!

I grew up thinking of myself as extremely social, because I was always lonely, and I imagined if I had people to spend time with, I would never get tired of it.  I had two friends, my cousin and my parents' friend's daughter, and I adored them.  Both seemed so much more socially savvy than me; I was aware that my first-tier friends considered me more of an odd person they hung out with sometimes than their own best friend.  But, I mean, of course I wasn't adept socially, I was homeschooled.

When I went to school for the first time in fourth grade, I had a hard time adapting, but again -- homeschooled!  I had trouble realizing that the rules could occasionally be broken for good reason, like that it was okay to shout out to get the teacher's attention if you'd had your hand raised for twenty minutes and he wasn't looking up.  I cried if the teacher gently teased me.  I had several friends, but most of them kind of treated me like a pet.  I figured it was because I was the tiniest person in my class.  There was one kid who was really mean to me because she said I had a "staring problem."  I couldn't figure out where the line was between looking and staring; I knew that sometimes I zoned out with my eyes fixated on something, but it didn't seem to me like a big deal that someone should be mad about.

In fifth grade I was in Catholic school, where bullying was not really taken seriously.  So I got teased a lot.  I got teased for talking to myself, for being unfashionable, for having messy hair, for smelling bad, but honestly I couldn't figure out what exactly I was supposed to do to not get bullied.  One time all the "cool kids" randomly decided to be nice to me, and I was thrilled -- I'd finally made it past being "the new kid" and would now be popular!  But no, they just let me play Truth or Dare with them long enough to extract some new material to torment me with.  One time my teacher, very concerned for me, sat down with me for awhile to find out what my deal was.  I am not sure what made her think I had one, and I didn't know what to say, so I just broke down and sobbed for awhile and she was nice about it, and that was that.  A short time later she dismissed me early for lunch while keeping the rest of the class behind, and once they all came out to recess, they told me the teacher had told them they had to play with me because I didn't have any friends.

This wasn't quite true.  I had some friends.  They were mostly misfits of various kinds; I hung out with a crowd that was obsessed with Sailor Moon, a show I'd never watched.  Or I played with the third-graders who had recess along with us.  There was one girl I got along really well with; we wrote these space soap operas together where everyone had zillions of babies that all got married.  But I mostly didn't get along with anyone well enough to get invited over to their houses, or to be in the group they put together for the talent show.  I had one friend who I carpooled with, and she invited me over sometimes.  This followed the pattern of my closest friend at my previous school -- she would give me makeovers and instruct me on pop culture.  Again, I felt like a pet.  We had fun, but anytime there was another friend available, I got ditched.

I got in trouble with one of the sixth-grade teachers for staring at her too intensely -- she had told me I was wrong when I knew I was right, and I couldn't think of anything to say, so I just looked back at her and she said I was being insubordinate.  It made sense to me -- my mom, too, has a really intense stare when she's mad.  But I did think that, being twelve, I shouldn't be too scary for an adult to handle when I wasn't intentionally trying to intimidate her.

The other sixth-grade teacher called my mother one time, concerned, because I often hummed and rocked back and forth while I worked.  She asked me about it and I didn't really know what to say ... I figured I just wasn't used to sitting quietly in a classroom to do schoolwork,  because I was homeschooled.  And that was that.

I was homeschooled again for seventh and eighth grade, and those years were pretty great.  I had friends in the homeschool group, because it was really too small a group to have outcasts and everyone was pretty nice.  We were all a little offbeat in different ways and that was okay.  People were finally interested in some of the things I was.  I really came out of my shell a lot those two years.  I remember one time I drove five hours in a van with a bunch of other girls to go to a Regnum Christi retreat, and I talked the whole time.  I just couldn't seem to shut up, even when everyone else got tired and wound down.  At the end I was like "I can't believe I talked the whole five hours!" and everyone else was kind of like, "WE CAN."  I realized I had talked too much and bored them all.  It was embarrassing, but no one stopped being nice to me because of it or anything.

Then, of course, there was boarding school.  It is impossible to say how I functioned socially because none of us were supposed to have friends.  No one would have either bullied or praised another person.  My directors said I was "emotionally immature," but I don't know if that was something they really thought or something they said to everyone, because they had zero understanding of normal adolescent development.  I was aware, though, of a number of us who seemed socially behind in some ways -- who were more desperate for attention, less able to hide negative feelings, that sort of thing.  I knew I was in that group; I thought it was because I was the youngest child.

I remember one time I was told by one of the consecrated women that I should imagine I was looking down on the conversational group from above, and imagine what I looked like from the outside.  At the time it made me massively self-conscious and I became convinced that everyone else despised me.  But perhaps she was just trying to help me learn how to take turns talking.  That has always been hard for me.  In some contexts, you basically have to interrupt someone if you ever want a chance to talk at all, because people overlap; in others, that's horribly rude and you have leave a long, painfully awkward pause before you say anything.  There is no rule about how long you're allowed to talk before you give someone else a turn, and no real way to tell what kind of stories are generally interesting and which are interesting only to yourself.  Sometimes you can tell afterward that you bored people, but it is hard for me to simultaneously pay attention to what I'm saying and how other people are reacting.  It's not so tough when it's one on one, but one on one conversations weren't allowed -- all conversations were in groups of three to six.  I can roughly estimate whether I'm speaking more or less than half the time, but I cannot for the life of me calculate whether I'm talking more or less than one-sixth of the time.  And, of course, in reality a group of six people does not split the airtime equally; the extroverted, fun, entertaining people talk the whole time and the quieter people just watch.  I am not sure which I am supposed to be; I'm good at talking, but I don't know if I'm boring.

After boarding school I was a changed person.  Instead of being oblivious and a bit off, I was extremely cautious.  I knew I might make a social misstep, but I didn't know how to be sure I wasn't making one, so I didn't talk much.  I didn't want to wear the wrong clothes, so all my wardrobe choices were extremely conservative (and still wound up being wrong).  I ran a club for younger girls and did okay with giving the talks and so on, but I didn't make any friends at first.

And then I started emailing a girl I knew only slightly.  We'd always been in the same groups but she was very quiet, and now that I was quiet too, it was even harder to get to know each other.  But by email, we both opened up and built a friendship deeper than any I'd had previously.  I realized that when you took away the pressure and timing problems of real-life conversations, it was much easier to get to know someone.  No talking and listening at the same time, you did them separately and could go through your friend's email and pick out the things you wanted to respond to.  We were both way into The Lord of the Rings, so we talked about that by email every single day.

My social problems seemed to disappear in college.  Everyone was nice!  Nobody bullied me!  It was great!  I did have one person tell me I had a tendency to run on, but I felt that was unfair because I knew the guys in our social group always did way more than half the talking.  But in general, the conversations were about intellectual topics that interested me, everyone felt free to interrupt if they had something to say, and no one was taking me aside separately to tell me I was annoying everyone, so, success! I did have some confusion about rules; boarding school had loaded me up with a ton of social rules like "don't ever discuss your health" and "never lean against the wall" and "never say anything negative."  I knew that not all of these rules applied to the world outside, but I wasn't always sure which ones.  Like, apparently it's okay to lie on the floor at some kinds of parties, but not other kinds.  You're just supposed to know.  I am not sure if I always gauged this right.  But if I messed up, people generally didn't complain.  My social group was self-selected out of very nerdy and offbeat people, and you had to be pretty darn weird to get funny looks.

And now ... *shrug* I don't have a whole lot of a social life in meatspace.  I have a couple of friends I have playdates with a lot.  We have a good time; sometimes it's awkward, but I never know if it's them or me or both.  I have had some issues with humor; things I think are hilarious don't get laughs, and if I tell a dirty joke, people are shocked even if they were telling them too.  They don't expect it from me.  And I know my delivery of any kind of joke is bad, so I usually stick to "deadpan rendition of a funny story" or just laughing at other people's jokes.  I still struggle in groups; the other week I had a book club and I was actively paying attention to how I managed the conversation, and the answer was that I either monopolized the conversation, or I kind of checked out.  And I hate how this makes it look like I'm self-obsessed.  Like everyone, I'm interested in myself (see also: this whole blog post) but I'm not uninterested in other people.  It's just that it's hard to listen to what someone else says and come up with a response that goes off of that, on the fly.  Instead I tend to talk about whatever I was thinking about on the way there, and spend the way home thinking about all the things other people said, and what I might say in response to them next time.

I'm shy, shyer than I used to be, but I think it's because I'm more aware than I was then of all the ways you can go wrong socially.  I have gone to several meetups lately at the park, hoping to make friends, and sometimes I just chicken out and watch the people from a distance, not being sure how to approach.  And what if you approach and say "Is this the eclectic homeschooling group?" and they say "no, it's not"?  THEN what do you do?  I don't know!  Even if I do get up the guts to actually meet up with people, it's usually horribly awkward, we make boring small talk, we all go home, and I have exactly the same number of friends as before.  Like, how many of these unpleasant social occasions do I have to go to to make an actual friend that I could meet with one on one, as I prefer?  I have made ... oh ... two actual friends at these things, in the seven years I've been a parent, if you count a friend as someone you meet with individually.  And it's really hard to force yourself to go to things when you like the people, but you know that you're very likely to just stand there feeling stupid the whole time.  Couple that with how exhausting and overstimulating my life is without that stuff, and you have a recipe for never going anywhere.  And given how much easier and more fun online interaction often is, I'm not sure I even feel bad about that anymore.

Going over all this, it all seems obvious that I have social difficulties.  That it's not that I've just happened to have been bullied by such a wide array of people, but that maybe I am (as at least one teacher has said to me) bringing it on myself by being so weird.  I've learned to socialize at least well enough that people don't appear to be put off (but how would I KNOW??) but at the cost of so much anxiety that I'd usually rather not even try.  I don't know what it would take to get me to feel confident socially; and actually, if I could, wouldn't that just put me right back at "talks for five hours at people who are tired of listening"?

I just don't know if I should rewrite the narrative of my life from "I am socially anxious because I have had so many negative social experiences and too few positive ones, I should just put myself out there more" to "I am socially anxious because I am congenitally bad at socializing, it's possible that nothing will help."  On the one hand I feel more acceptance about it the latter way -- I don't have to be angry at everyone because they did not Ruin My Life.  But on the other, it absolutely increases my anxiety.  I worry that I am putting everyone off by something I don't even know I'm doing, that everyone knows I'm different but me, that they've been hinting at me that I'm doing something wrong and I've missed all the cues.  How, as an adult, would I find this out?  (John is no help; one reason I like him so much is that he isn't so much more socially competent than me as to make me feel inferior.)

Perhaps, as with Marko, this doesn't really have to change anything.  I can be easy on myself with things that are hard for me while occasionally seeking them out for the sake of my personal growth.  It does make me feel like I should put a higher value on convention and etiquette, realizing that my own inuition might not be as reliable a guide as I think.  I would rather trust my gut, but it's more important to know I'm not making other people uncomfortable.

A part of me feels like even talking about the broader autism phenotype is being a special snowflake, trying to appropriate a real diagnosis that belongs to other people.  I just read all these books and think, "But I do that.  And that.  And that."  Yet, I mean, it's like horoscopes -- you read the personality description and say "that sounds like me!" even if it turns out later it was the wrong one for you.  Because it's easy to see yourself in anything.  Still.  I think it does have some explanatory power for questions like "why is my family so smart but also weird?" and "why did I spend my entire childhood on the outskirts of kid society?"  And maybe that's all it is.  The good side of it is, I understand a lot of what Marko thinks and does.  Not all, by any means, but I think a little more than a lot of people do.  It's a bright side.

(The dark side is thinking, "His autism is my fault.  And John's fault.  Each of us should have found an extrovert to marry."  But, his autism is not a tragedy, so I try not to think that way.)

If you know me in real life, feel free to comment anonymously and tell you if you think I'm socially awkward.  If you say no, though, be aware that I will have no idea if you're just saying that to make me feel better.

7 autism takes

1

Last week I went to the library, and since the kids distract me too much for any browsing, I just went to the psychology shelf and pulled off half a dozen books about autism.  I figure it's time to do some serious research, because the information I get on the internet is pretty shallow.

I'd like to do a full review on every book I read, but I don't have that kind of time, so I thought I'd do a mini-review of each book and share some of my thoughts about what I read.

2

The first source isn't a book; it's a movie -- Temple Grandin.  A friend lent me the DVD and I really enjoyed it.  It's the story of how an autistic woman develops from a nonverbal child to a designer of livestock management systems.  Dr. Grandin is very famous in autism circles as a success story -- you can watch some of her speeches online.

I loved how the movie showed you how Temple, who is extremely visual, sees and imagines the world -- by making normal things that frightened her look creepy, or by flashing quick images of the things she's imagining when other people talk to her.

What really gets me in the movie is what a fine balance Temple's parents and mentors have to walk -- neither failing to challenge her, nor letting her flounder.  If her mother hadn't forced her to go to college, I doubt she'd ever have been able to achieve what she did.  But on the other hand, if she hadn't insisted the college allow Temple to keep the "squeeze machine" she used to calm her sensory meltdowns, I doubt she could have succeeded at college.  Always a fine line between allowing an autistic person to be themselves, and forcing them out of their comfort zone.

3

Next I read a book, Songs of the Gorilla Nation.  The author has not only autism, but also synesthesia, an eidetic memory, and a masterful command of language, so that it's a lovely book from beginning to end.  It tells her story, from running through her childhood home repeating words over and over, through a traumatic time in school, dropping out of high school, being homeless, and finally discovering her life's work studying gorillas.  Only at 35, after experiencing difficulties in her longterm relationship, did she finally seek and obtain a diagnosis.

The author is clearly a person of deep emotions and aesthetics, and I found I identified strongly with her.  Like me, she becomes attached to things of great beauty.  And like Marko, she cannot bear for anything ever to change:

"My need for repetition extended to routes, places, and activities. When we went to the store, the cleaner, or the park, I would insist on going the same way every single time.  I would silently acknowledge landmarks as the route unwound, whether they were the buildings and hills or the flowers and trees. I had memorized everything.  To me, each flower, tree, building and hill was a person, a being with its own personality and sense of agency.  If I did not see it, it missed me and felt abandoned. I would panic if we did not drive or walk by it, because it would think I didn't exist anymore and would be worried. In turn, I felt like I would disappear if I were not hemmed in by the familiar and unchanging.

I would feel like I was dying--my heart would pound, my ears would ring, and my whole consciousness would go hollow--if something changed. I remember instances of buildings being torn down, trees being cut, new roads going in, and two building fires happening along my routes.  It took weeks for me to recover from these things.  I would cry and yell and announce my convictions regarding the basic evil of mankind.  I hated the changers and the changed.  To me, change was nothing less than murder.

Oftentimes I would not accept these changes, and if we passed the site of a fallen tree or a new building, I would close my eyes and remember it the way it was until we had moved on to the safety of the sacred permanent. Sometimes I would have dreams about the buildings, trees, or fields that had disappeared, and in those dreams I would hug them and tell them how much I loved and missed them."

Marko cried for a couple of weeks recently over a lamp that had broken.  At the time, I suggested that it was probably that he was upset over the new baby and couldn't verbalize it so he fixated on the lamp instead, but maybe I was wrong.  Maybe he really was that attached to the lamp!

The book had a lot of highs and lows -- from the poignancy of her time on the streets, too shy to beg and reduced to digging food out of the trash, to the triumph when her son is born and she holds him in her arms for the first time.  It's just a beautiful, beautiful book.

4

The next book I read was Neurotribes, on the recommendation of reader Sojourner.  It's a history of autism, from the mad scientists of the time before autism was recognized, to its simultaneous discovery, on different sides of the Atlantic, by Leo Kanner and Hans Asperger, and beyond, to what we are learning today.`

The book attempts to prove, and I think successfully, that autism is not a new and scary epidemic, but a genetic condition that's always existed and which we're only now beginning to recognize the scope of.  Rises in reported cases correspond closely with increased awareness and expanded diagnostic criteria.

The trouble with our early knowledge of autism is that Kanner and Asperger defined it very differently.  Kanner, an American psychologist, said it was an extremely rare condition and his criteria for diagnosis were very strict.  A child with real autism couldn't have "infantile schizophrenia" (a diagnosis at the time which has since disappeared into autism), or any other conditions like seizures (which now are known to affect a large percentage of autistic kids).  He described the condition with eleven case studies, all of very severely affected children.

Asperger, on the other hand, worked at a children's school for special needs in Austria and had 200 different cases.  He recognized that there was a continuum in the condition from nonverbal children all the way to verbal, quite intelligent kids he called "little professors."  Unlike Kanner, he suggested the syndrome was "not at all rare."  Unfortunately, Hitler came to power about then, and the school was shut down.  Asperger's work didn't become widely known for decades.

Something both Kanner and Asperger noticed that the parents of autistic kids often seemed quiet, logical, cold, or closed-in.  Kanner's explanation was that the coldness of the parents had wounded the child's developing psyche, causing him to develop autism -- the "refrigerator mother" hypothesis, which led to children being institutionalized to save them from their parents' toxic influence, as well as many parents avoiding diagnosis for their children for fear they would be blamed for it. For his part, Asperger believed that autism ran in families, which is what we now believe.

The double discovery resulted in a diagnostic separation at first -- "autism" referring to children with a language delay, social deficits, and repetitive behavior, and "Asperger's syndrome" referring to similar children without any language delay, as well as having high intelligence.  In time, it became clear that Asperger's and autism weren't really as different as they appeared, and Asperger's was rolled into the autism diagnosis -- resulting, of course, in an apparent skyrocketing of the autism rate.

One thing that the book made clear to me is that the autism spectrum isn't a static thing -- where severely autistic kids will grow into severely autistic adults, while more mildly affected kids (those with what we used to call Asperger's) stay that way forever.  Rather, some kids make massive leaps from completely nonverbal to being able to function and socialize normally, while others regress and lose skills they had previously had.  This can cause a great deal of confusion about treatment, because children may make big leaps forward or backward seemingly at random and have it credited to a diet change, new supplement, or a vaccine.  It's hard to say, at any given time, if gains should be credited to therapy or just to a child getting older.

The really striking bit dealt with the follow-ups from Kanner's original group of eleven severely autistic children.  One served in the Navy and was married with kids.  One graduated high school with top marks and an IQ of 150.  One got a scholarship to study mathematical physics.  One had gotten a degree in French and became a bank teller, after having been raised by foster parents who were "very fond of him" and "gently firm":

 "As Asperger's team had done for their own patients, the Lewises had found ways for Donald to put his autistic intelligence to work, rather than treating his passions for counting and collecting as pathological obsessions inflicted on him by his parents. 'If one factor is significantly useful, it is a sympathetic and tolerant reception by the school,' Kanner concluded. 'Those of our children who have improved have been extended extraordinary consideration by their teachers.'"

On the other hand, some of the children were institutionalized and these did not improve.  "[The children] who spent most of their lives in institutional care have lost all their luster early after their admission .... If at all responsive to psychological testing, their IQ's dropped down to figures usually referred to as low-grade moron or imbecile."  This is despite all the children originally being at very similar levels of functioning when Kanner first described them.

It both frightened and reassured me -- frightened, because clearly autistic children are very vulnerable to the wrong environment; reassured, because none of these kids had any official "therapy," just the sort of flexible but demanding parenting we are always told kids need anyway.

5

Now I'm not entirely on board with everything in this book.  For instance, the author insists that autism is mostly genetic, which twin studies do affirm, but he completely glosses over the fact that twin studies also show that it isn't entirely genetic.  Perhaps 25% of cases may be caused by something in the environment.  The author also makes it sound like autism is just great if only people are willing to adapt. He tells stories of autistic get-togethers where everyone gets along famously so long as the neurotypicals aren't around.  And I know that autistic people don't always get along well with each other at all -- it really depends.  It's true that the world could use to make more allowances for the autistic, but it is also true that autism is a disorder which makes life more difficult for the people who suffer from it.  I appreciated a look at the "bright side" of autism -- the misunderstood geniuses, the kids whose families learned to accept them for who they are -- but it seemed just a bit too sunshine-and-rainbows.

That said, I think I can get on board with the notion that autism, and the traits that play into it, might have value in our society.  Temple Grandin said that if you could have wiped out from the human gene pool every autistic gene, mankind would still be socializing in caves, without any of the monomaniacal geniuses who could have invented fire.  Autistic people, and nerds with some autistic traits, may be the key to developing new technologies -- people whose true happiness is in their obsessions, who can spend a lifetime working on one single thing.

6

Next I read Temple Grandin's book The Autistic Brain.  This dug into a lot of what I most wanted to know, which is what exactly autism is, and how it feels to be autistic.  How can I empathize with my child if I don't know what's going on in his head?  He isn't always very good about communicating that stuff to me.

I found it a super cool book, discussing not only information obtained from brain scans, but also genetics and self-reports of autistic individuals.  Finally something that actually addressed what autism is rather than a list of behaviors observed from the outside -- because I know about the latter already!

The brains of autistic people tend to be unbalanced, with some areas of the brain overdeveloped and others undeveloped.  Grandin shares scans of her own brain, which has small language centers and a massive visual-processing area -- unsurprising, given that she was a late talker and thinks in pictures.  But she's careful to point out that not all autistic people have brains like hers. While it's characteristic of the autistic brain to be exceptional in some areas and underdeveloped in others, which areas are which vary from person to person.

One commonality, though, is that autistic people have larger amygdalas.  The amygdala is the part of the brain that processes emotion, especially fear.  This is why autistic people so commonly suffer from anxiety.  Another interesting thing (not actually mentioned in this book, but I'm putting it here because I can't remember now where I read it) is that the autistic brain does not become used to things in the same way.  For instance, if I hear the same joke a second time, I don't find it funny, and if I hear the same phrase said ten times, I get tired of it and wish it would stop.  Autistic people don't have this happen, for whatever reason -- when they watch a beloved movie, even though they know what will happen, they can enjoy it just as much.  And, of course, Marko loves to say the same thing over, and over, and over, and OVER.  Drives me insane.

Like autistic brains, autistic genes aren't all the same.  There are any number of genes which might be associated with autism, but in a sample of a hundred autistic people, there may be only two or three people with any specific shared mutation.  That makes it difficult to find out which genes are actually causing autism.  It's almost certainly more than one in each person -- that is, there must be alterations in several different parts of the genetic code for a person to develop autism.  I read an interesting study awhile back showing that parents of autistic children often showed "autism cluster traits" -- that is, they had some traits associated with autism, but not others.  For instance, the father might be extremely rigid while the mother suffered from language difficulties.  More study in this direction would be extremely interesting and possibly shed light on why autism develops in such a predictable pattern even with such different genes -- and why some of family members of autistics don't have autism.  What exactly does separate a nerd from his autistic sibling, and why don't we have a word for the thing the nerd has?

Both the brain chapter and the gene chapter got me thinking about the possibility that autism is really just an umbrella term.  It's extremely common because we're lumping in so many totally different things in the same diagnosis, based on a list of common traits.  Perhaps one day parents receiving their child's diagnosis will hear something like this: "Johnny has mutation A on his B gene, an enlarged C region and a small D region in his brain, and behaviors E, F, and G.  This means he has autism type 5, which has prognosis H and will respond best to treatment I."  But we are nowhere even remotely close to this right now.

[Note: some autistic people really do not like research being done on autism genetics because they worry the only use of this research is going to be prenatal testing and eugentic abortion.  I think that's a very valid concern, but at the same time I think we'll never understand what autism IS, and what plays into it, without looking at the genes.]

Grandin spends a whole chapter talking about sensory issues, which she says are underemphasized in autism research and therapy.  Doctors focus on behaviors, without realizing that totally different behaviors (e.g. melting down and shutting down) might come from the same internal experience of overstimulation.  Some autistic people have difficulty integrating and interpreting sensory data, and she shares interviews with some of them to give us an idea of what it's like to, for instance, see a yellow thing, see that it's a rectangle, examine the hinges for a bit, before finally concluding that it is a door.  Or to be in a noisy restaurant and not being able to sort out the conversation you're in from the conversation at the next table.

In short, it's a great book for summarizing some of the best science available, and also for helping neurotypical people empathize.

7

Here are a few of the main conclusions I've drawn after all this reading:

1.  Autism is primarily about imbalance rather than deficiency -- excelling in one or two areas while being underdeveloped in more general forms of intelligence, like executive function or social skills.  So while autistic people are not necessarily geniuses, they may appear to be geniuses in their preferred subject because they are devoting much more of their attention to it.  Marko's intelligence was tested during all his screening, and his IQ came in at 104 -- just about average, which was actually very surprising because he seems like a genius to me.  But the results came with a caveat that the score was so scattered -- abnormally high in some areas, vanishingly low in others -- that it might not be useful.

2.  Two of the most noticeable features of autism, adherence to routine and self-stimulatory behavior, are ways that autistic people manage overwhelm and anxiety. As such, you can't actually train children out of them.  I have tried and tried, but have found that anytime I actually break Marko of one fidget, he comes up with another.  When I stopped him from pulling his hair out, he started chewing his clothes; now I've mostly got him to stop chewing his clothes and he reaches down his pants to scratch his butt.  These behaviors magnify a millionfold when he is stressed out.  So rather than trying to extinguish these behaviors, I should be attempting to reduce stress, and acknowledging that when I ask him to do something scary and difficult, they'll crop up more.  Likewise, in stressful situations, providing a reliable routine might be the best way to manage his anxiety.

3.  The autism spectrum has a very long "trailing edge" -- that is to say, even beyond the point where a person could be reasonably said to have a disability, there are people with autistic-like experiences and behaviors.  These are the absent-minded professors or Silicon Valley geeks who might be able to handle life on their own okay, but who still seem kind of awkward or "off."  And these people are often the parents, children, or siblings of autistic people.

This is something I already knew, but it's kind of shaking me up at the moment.  I knew I had some characteristics of autism (specifically, sensory sensitivity).  But now I'm wondering if I'm more socially awkward than I think -- whether everyone around me knows this and just never said anything about it.  I might write a whole separate post about this.

4.  There are three different ways to look at autism, and it's possible that all are true.  You can look at it as a disability, of course, because there are things autistic kids struggle with.  You can look at it as simply a difference -- autistic kids are different and special and the world should adapt to them without making them feel like they're less.  And last of all is as a moral fault -- in that autistic kids, unlike for instance blind kids, are expected somehow to overcome their autism and change, to actually rewire their brains as needed to gain the skills everyone else has.

Language of disability is useful when it comes to making adaptations for kids.  To get the school to adapt, I can simply say "he's disabled and needs these supports."  You'd no sooner expect him to succeed in a noisy, chaotic school than you'd expect a child with no legs to succeed in a school full of stairs.  Language about difference is most useful when it comes to accepting the special and unique kid I have.  He's not really defective, not to us, and perhaps other people could stand to learn something from him.  In most respects I think the "moral fault" idea is wrong -- if we don't tell a blind person to quit waving that white cane around everywhere, why should we tell an autistic child to stop spinning?  But since autism is somewhat changeable, this viewpoint has its place.  When Marko said the other day that he has one friend and does not ever want any more friends, I knew that making friends feels impossible to him -- but I also know that it isn't actually impossible, so I'm not going to let him just opt out.  If he grows up to be an introvert, fine, but he can make that choice after he's learned enough social skills to make it an actual option.  There are some things he's going to have to do as matters of ethics -- learning to let other people play their own games without trying to control them; learning not to walk around proclaiming that he hates babies.  He can do better and I expect him to, even while my goal is not to make him "indistinguishable from a neurotypical child."

5.  There's a crap-ton we don't know about autism.  We don't know why it affects more boys than girls -- are girls being underdiagnosed, or is there something about being female that protects them from developing autism?  We don't know what genes cause autism, or what environmental factors play into it.  We don't know what therapies work best.  We don't know why some kids display autism symptoms from birth while others develop normally and then regress.  We don't know what subtypes of autism there are and what treatments work best for each.  It's kind of scary living in a time when we recognize the condition, but know so little about how to deal with it.

6.  Autism is not the end of the world; it can lead to both struggles and superpowers.  It seems best to me, at this moment, to think of Marko most of all as a regular kid, with both strengths and weaknesses.  I want to play to his strengths without excusing his weaknesses.  Once I've gotten him the help I need to get him -- speech therapy, which he started this week, and probably school enrollment -- I can relax again and just do what I've been doing for some time now ... gently pushing him into the next skill he needs to work on while trying not to push so hard I lock his wheels up.  Exactly as I would do with another kid, except that his strengths and challenges are unique.  I feel, after reading all these books, that perhaps I am qualified to be his mother after all.