Life with Aspergers

I get asked what it's like to have a son with Aspergers. Sometimes, the question comes from a parent who's child just got diagnosed. Other times, it's from the genuinely curious. Other times, it's from those that wonder if, had they been a bit odder or a bit later, would have been diagnosed.

For every one person that asks, I'm pretty sure there's four or five that would want to know, but don't bring it up. They think I might be offended. They think it might be prying. They worry that it'll come off as morbid curiosity.

I've never been offended by anyone asking about Jake. I'm very open about his Aspergers, mostly because I want people to see that people on the spectrum aren't some strange alien race to be avoided, but that they're people. I believe that hiding it only leads people to think that disability of any kind is a dark mark on a household. It isn't.

The Early Years

I thought Jake had colic when he was born, but, looking back, I wonder if his sensitivities were on the surface from day one. He would scream (not cry) for hours while his father and I would pace around with him. If you set him off, your day was screwed.

If he wasn't screaming, however, he was a really good baby. He smiled. He engaged. He entertained himself. In fact, he entertained himself really well. While he was always happy have the attention of someone, he didn't require it. He was just as happy messing with his toys or watching Thomas the Train.

In fact, sometimes it was really hard to play with him. I would try to play with him, but if I wasn't performing, he just wasn't interested. At one, he would shoo me from the room if I wasn't being enough of a dork.

The fits didn't stop, even though he was well past the colic age. They came on for no reason, it seemed. He'd be playing, and suddenly he'd pitch the toy he was playing with across the room and start screaming. It just became one of those things that we learned to deal with. I was neurotic about always having a quick way out of any social situation, because I never knew when he'd go off.

Around two and a half, I realized that he wasn't talking. He said 'ma' and 'da', but that was it. He didn't seem to understand commands. I mentioned it to his doctor, and she pushed me to contact Child Find, and to ignore anyone that was telling me that this was 'normal'.

After some hemming and hawing, I called them, and the tests started.

Jacob. Hated. Tests.

He would scream and cry. He'd throw himself against walls beg to go home (He'd finally picked up a third word: GO). He refused to even look at the cards or the tester. If it required equipment, he'd do his best to destroy it. One tester looked at me after a particularly trying session and said "Wow. You must be really tired."

After we figured out that tests weren't working, the state decided to send someone to his daycare, once a week, to work with him. There was no official diagnosis besides the obvious: language delay.

Hyperlexia

He really liked the lady they sent to work with him. She was gentle and non-threatening, and brought special toys that were just for him (he's still not much of a sharer). Around this time, on his own, he picked up the alphabet. While his vocabulary wasn't growing, he was learning to spell words. If he wanted milk, he'd say "M-I-L-K". If he didn't want something, he'd spell out N-O. He learned to spell everything he could.

It wasn't talking, but hey, I'd take it as a step forward.

Excited, I shared it with his teacher. She noted it, but didn't seem as thrilled.

After a year of testing, she came to me, outlining where he was doing quite well, and where he was still having issues.

"We think he has something called hyperlexia."

"I've... never heard of it."

"It's usually a precursor to a diagnosis of Autism."

That hit me in the stomach. I had hoped that his issues could be solved. If we could get him up to speed by Kindergarten, then we would be fine.

You can't solve Autism, though. You can treat it, you can shape it, you can do your best, but it never goes away.

I started reading up on hyperlexia, and was stunned. These other kids, they sounded just like Jake. When they drew, they did so in letters. They could read long passages without effort, but had no clue as the meaning. They disliked toys that were people, preferring trains or cars or magnetic letters. Changes in routine caused them to throw world-ending fits.

They also had the same behavioral issues. They threw fits. They didn't follow commands. They were not sharers.

Though I felt like I had been punched in the stomach when I first got the diagnosis, I suddenly felt a weight lifting. I had Jake when I was twenty. I was uncertain about my parenting skills. I had thought, all along, that I was a bad parent. Just like that, it wasn't my fault anymore. He had a condition, and we were getting him treatment. I had done just what every other parent before me had done.

I was a pretty good mom, and I was going to make this better.

Autism

Jake started kindergarten with the label of hyperlexia, but it was understood that it would morph into an autism label before long. Hyperlexia isn't normally something that sticks around. It's a way the child organizes the world when their brain isn't doing it the normal way. Once they get the skills to organize the world in a more efficient way, the hyperlexia goes away.

Once Jake was in school, this happened pretty rapidly. He was talking more and more, and using unique phrases almost exclusively. His social skills were picking up. The fits had all but disappeared.

Lack of language makes us super cranky.

He'd changed so much that, upon his re-evaluation, the woman who had once commented that I must be tired didn't recognize Jacob at first. It wasn't until I related the tale of him throwing himself against the door that the light bulb went on.

Aspergers

Somewhere around age seven, Jacob's diagnosis morphed again, this time to Aspergers. This didn't feel as dramatic as his first diagnosis. By now, I was used to the shifting sands that is the life of having a special needs child. Does he still get services? Awesome, fine, where do I sign again? You can call him a giraffe if it means he gets the services he needs.

Jake, now able to talk just fine, was making up for lost time. He never stopped talking. Ever. If I needed him to be quiet, I would make him put a hand over his mouth. After a few minutes, he'd need both hands. By ten minutes, he looked like he was going to burst if he didn't get to say something right now.

The last traces of hyperlexia also faded around this time. The kid that, at three, could spell Zimbabwe and xylophone was flubbing spelling tests. I bet I'm the only parent that was happy to see a 'C'. He'd learned to organize his thoughts in a different way.

Around this time, Jake got into hockey, football, and video games. Unlike most parents, I pushed this. You see, Jake, and so many Aspergers people, will focus on strange topics and want to talk about them obsessively. With Jake, it was production companies.

No one wants to talk about production companies. No. One.

Video games and sports, however, are perfect for the detail oriented mind. They're practically nothing but details! At a family gathering, he struck up a conversation with another boy about the Redskins, and it sounded so utterly normal, I wanted to cry.

This was also when the school got serious about mainstreaming him. He'd always been a little mainstreamed, but it was now clear that he could take regular classes without too much trouble.

While he was still in a regular class with special aides, they now left him on his own and helped the other students, some diagnosed, others not.

My proudest day was the day that some educators for Harvard came down to see how his school was doing mainstreaming. His teacher asked them to pick out the four children in the class who were receiving services.

They skipped Jake, and picked out a child that was likely on the spectrum, but whose parents refused testing.

Today

These days, Aspergers is something we trip over more than treat. It's becoming harder to see where it's shaped his mind in peculiar ways.

One thing I realized recently is that Jake can't do proportions. After going around and around over a puppet for a project, I finally realized that ratios had no meaning for him. No matter how many times I told him to make the arms bigger, they were still going to end up the same size. I ended up doing the cutouts myself. I could have taught him, but honestly, this is probably the only puppet he'll ever have to make.

He's also very literal, and takes fears very much to heart. The current bully-awareness campaigns have made him certain that he shall fall at the hands of hordes of bullies. This is coming from a child that's never been bullied, and the one time a kid was mean to him, it went over his head completely.

He has trouble with grace under fire. The second something makes him anxious, his language skills disintegrate. He forgets all of his training regarding eye contact and stim. You can watch him revert, and it's a reminder that the issues are still there. We just painted over them.

Frequently Asked Questions

Doesn't he just see the world differently?

It would be really nice if it were just that simple.

Yes, Jake can sometimes have a sideways view of the world. While this will occasionally give him an advantage, it's more common that it trips him up. He processes words differently, so he often has trouble with verbal commands. He's very detail oriented, but has trouble seeing the big picture.

This world is built by, and occupied by, neuro-typicals. He has to navigate this world, like it or not, and he has to develop the skill set to do so. It's been a hard trek, and the work isn't over yet. It's not about seeing the world differently. He's missing parts of the world that we have to teach him how to see.

Do Autistic kids have emotions?

Oh my god, this one cracks me up. No, really. Anyone who's ever gotten in the path of an autistic child in one of their mood swings knows for certain that they have emotions. Those emotions will burst your eardrums.

I think what they mean is, do they have interpersonal emotions. Do they love? Do they feel attachment?

Yes, they do. Even the most severe cases (non-verbal, non-communicative) will show preference to some people over others. There was one little boy at the special needs day care where I worked that showed this, perfectly. He was quite severe, never talking, stimming all the time, never making eye contact. He obviously adored his mother. He was happy when his father picked him up, but if mom walked through the door, he was besides himself.

As for Jake, it became very clear that he craved our love and approval. If we were ever disappointed in him, he would throw himself back and moan that we'd broken his heart. To this day, I have to keep the phrase 'I'm disappointed in you' put away, except for occasions when I really need to get through to him how bad something was.

So, that vaccination thing...

No. Autism is not caused by the MMR vaccine. The paper this was based on was hugely flawed, and has a lot of nefarious backstory to it.

But what causes it?

Interesting question.

Remember, Autism is a cluster of symptoms. Some spectrum cases are clearly caused by genetics (Fragile X). Some show signs of being a combination of genetic factors. There's a few cases that pointed to environmental factors, though they're rather rare.

Think of it like a broken arm. You can break your arm all kinds of ways: a car accident, falling down the steps, a bar fight, or just due to crap genetics that have left your bones brittle. The treatment, though, is often the same: get the bone to repair itself.

There can be many causes for Autism, but that doesn't affect the result. I view the causes as interesting trivia, but since 99% of the causes can't be helped, I rarely worry about them.

Did Jacob regress?

Many parents report regression with Autistic children, but I have to say, no, Jake didn't regress. He didn't lose language. He never lost social skills. I know it happens, but it's actually less common than the media makes it out to be.

What do you think about the DSM-V's re-categorization?

Eh. My background is in Psychology, and most of the doctors I worked with didn't give two farts about the DSM.

I will say this: re-categorizing it as a personality type, rather than a disorder, isn't a bad thing. Many Aspergers people have lived a full life without intervention. A wise professor once told me that a disorder is only a disorder if it keeps you from being happy, and being a productive member of society. Do those people have a disorder?

Did you worry about having another child?

Yes. I knew it was a risk. There are strong indicators that autism is genetic. I won't lie: I was in a state of mild panic the entire pregnancy, and well into her first year. It wasn't until she started talking that I began to relax.

Why did I risk it, then?

I had an older brother who died when I was four. Being an only child, for me, was a terribly lonely experience. Maybe it was because I had seen, briefly, what life with a sibling might have been. Being autistic is already lonely. I didn't want to add on to that loneliness if I could help it.

How does he get along with his sister?

Jacob ignored Hannah until she became mobile. After that, she would be ignored no longer and demanded his attention.

These days, they play surprisingly well together (when they're not narcing on each other). It's mostly physical stuff, like races and wrestling, but that's a language that Jacob's always understood.

If she says something that's inaccurate, it drives him up the wall. This delights her, of course. I try not to step in, though. Life is about challenge, and how we deal with it. He's learning to ignore her pushing his buttons.

More questions?

Hit me up in the comments.

The Littlest Intern

This summer marks the end of my son's elementary school career. In this neck of the woods, sixth grade is the beginning of middle school, and the start of his world getting a little bigger.

Hannah, with red eyes and sharp, angry teeth, sneaks up on her brother.

Normally, his summers are a series of days in which he wrangles as much video game time as he can out of his grandmother, fights with his sister, and avoids going outside into the sweaty bumhole that is DC from June to September. We've done camps, with mixed results, and one bout of summer school, with tragic results.

What can I do with him for three months that keeps his brain from turning to mush?

The idea hit me when I was playing with Code Year. How cool would this be for him to dive into? There's no set-up, and the examples are incredibly clear. Unfortunately, school and homework leave him pretty drained. A tired kid is not a kid that's going to learn much.

So what about the summer? He has a laptop. I could send him to grandma's with it on his back and he could do it there. No, I realized, that wasn't likely to happen. He'd just turn on YouTube and watch NHL recaps and Let's Plays. It's not his grandmother's job to pester him to do a lesson, and she might not be able to help him if he got stuck. I'm sure he'd go with the intention of doing a lesson, but summer days have a way of getting away from you.

Then it hit me. He could be my intern.

I work from home, so I wouldn't have to annoy my office mates. And there are some little tasks around my home office that he could help with. He's shown interest in my work, but we really haven't had the time to sit down and go over what I do besides "Make computers go." Joining me in the office, one day a week, should give him the chance to learn what I do, help me with some of the more tedious things that must be done, and gain a skill or two.

And you know what? I'll even pay him and cover his lunch. I'm now 9000% better than most internships out there.

TaskSkill
Scan in notes and sketches that have piled up. Everyone should know how to use office equipment. There is nothing sadder than five people with advanced degrees panicking around a printer.
Perform office maintenence. It took me a long time to learn that desks are not cleaned by the magic cleaning fairy. There is also no fairy to restock the printer paper.
Test websites I am shocked at how many people who make websites can't test websites. Seriously? You didn't notice the header was gone?
Work through Code Year and Hello World Part of internships is learning, and these are two great resources for doing just that.
Update his own site It's been up forever, and he's been interested in adding to it. Now, he'll have dedicated time.

My mother suggested filing. I didn't have the heart to tell her that I haven't had to file anything in six years.

Looking back, looking forward

I don’t do resolutions. I don’t have anything against them, but they do feel like daring the universe to throw distractions and impediments your way. The few years I’ve made them, I’ve had some ridiculous results.

Plan to lose weight? Get pregnant.

Decide to spend more time on my hobbies? Get a promotion and become crazy busy.

Get the house in order? Extended family medical emergency.

So, instead, I like to look back and think about what I got done this past twelve months.

2013

2013 was insane. I’ll sometimes talk about how I felt like I spent my early twenties idling. These days, I feel like all the action that should have happened then is being crammed into my early thirties.

Barbara Shaurette and I ran the first Young Coders workshop. Maybe someone else saw how much this was going to explode, but I was caught completely off guard. I ended up running another workshop at PyOhio, and I have several more lined up for 2014.

For the first time, I spoke at a technical conference that didn’t revolve around Python.

I published my second book. It ended up being three times as long as my first, but out in the same amount of time. I’m getting better at this!

I got my first one star review. I survived it with a bit of wine and a lot of comfort from other author-friends.

My daughter started kindergarten. All of the children are now in school!

I got the urge to mother something. Rather than have a baby, I got a dog. Dog > baby, 100%.

My husband and I celebrated our first anniversary. I actually got around to planning our honeymoon. I explained to the kids that no, they were not going with us. I threatened to go into detail as to why.

I taped a series of videos for my book. I thought this would be easy, since I do talks all the time, but the experience was both surreal and educational. I learned that I talk way too fast. I also learned that being slightly prepared makes you something of a treasure in the tech world. I think I got thanked for having my slides ready the day of the shoot about forty times.

I took up knitting again. I don’t know what’s changed, but I’m suddenly knitting much faster. Projects that were taking me months to finish are now taking me weeks. Look at all these things I made this year! Most of these were done in the last quarter!

All of my finished objects for 2013. There are eleven items: One baby sweater, four sets of gloves, two scarves, two washcloths, and one bunny.

I won NaNoBlogMo. I even sold some of the posts!

I convinced two of my friends to join me at Cox. I realized that I no longer word my sentences so Cox doesn’t sound dirty. When someone makes a joke about it, I stare at them blankly. 

I brought some nail polish to a conference, and it became a thing.

2013 was so packed that I’m staring at the items above, certain I’ve missed something.

2014

I don’t have a proposal in for a third book yet, but I have some thoughts. I’ll probably spend January banging out some outlines and seeing what sticks.

2014 actually has some planned vacations! This is a major shortcoming of mine. I tend to not plan in time to just get away and drink fancy drinks and read. I travelled a ton in 2013, but all of it was either business or to visit family (which, while nice, is totally not a vacation).

I have a few conferences lined up. Some, it will be my first time (PyTenn!), others, it’ll be like going home (PyCon!). At least this year I’ve actually planned well in advance.

The boy will start his last year of middle school. We will start preparing for high school.

The girl will start getting actual homework. I’m girding my loins for that battle.

Here’s to 2014 being as awesome, though maybe a bit less hectic, than 2013!