Life with Aspergers

16 February 2012

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.

    The good:
  • He was talking more!
  • He was having fewer freak-outs as he was able to communicate more
  • He'd finally gotten through the horror show of potty training
  • He was playing with other children more smoothly
    The bad:
  • He spoke using mostly Gestalt (stock) phrases.
  • He was still doing that alphabet thing
  • He had odd ways of holding his body
  • He was having issues with fine motor control

"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.

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Comments

1 Martin Aspeli says...

Hi,

Thank you for writing this.

I have two other questions. Feel free to not answer either or both.

1) I gather you live in the US. One of the things that has always scared me about the US is the medical insurance system and the fact that the wrong medical/psychological thing happening to your or your family at the wrong time could, in theory, bankrupt you. I'm sure that's caused by reading only the horror stories, though I felt it somewhat when we lived in Australia and needed some attention for a hard-to-diagnose issue. Given that Jacob will likely require care for a long time, is this ever an issue for you?

2) As a parent, I think your own mortality is put into different perspective. It sounds like you're a wonderful mom to Jacob. One day, all things being equal, he'll need to do without you. How can you prepare for that?

Sorry of these are insensitive questions. I am genuinely curious, though, and as you said, it's not always easy to find people who may be willing to answer.

Regards, Martin

Posted at 1:28 p.m. on February 16, 2012

2 Katie says...

Hi Martin!

1) While that's true for many cases, a developmental diagnosis in a child is one of the exceptions. In the US, a child is eligible for services starting at six weeks. I've never paid a dime for any service that Jake has gotten.

That said, I live in an economically robust area. People in more impoverished areas don't have access to the services I do, like several specialized teachers and smaller classrooms.

Lastly, getting help means accepting a label. Many parents refuse to sign off on calling their child anything but normal, and so miss out on services.

2) I do my best to make Jacob as independent as possible. He's on track to have a full life, but I try not to let that lull me into a false sense of security. I push him to find ways to work past his issues, since I know the world beyond childhood can be an unforgiving one.

And don't worry about the questions :) I know many parents can be sensitive about these kind of things. It's why I make an effort to be open about it.

Posted at 1:55 p.m. on February 16, 2012

3 Ted Neward says...

I came across your blog quite by accident, but my eldest (18 now) was diagnosed with Aspergers after a language delay (and a few other diangoses), and my wife I think would love to share some of her experiences with him with you. Would you be interested in collaborating with another geek wife whose husband happens to be pretty geeky himself? :-)

Posted at 1:29 a.m. on March 22, 2012

4 Tony says...

hi, Lol I laughed about the fits. My child has autim and his fits at the doctor's office were legendary. At one point he needed a echo of his heart and it took Hi, Lol I laughed about the fits. My child has autism and his fits at the doctor's office were legendary. At one point he needed an echo of his heart and it took a doctor and 3 nurses to get the IV in. He is better about that now (Thank God). He is in therapy now which has helped a great deal. My son is getting ready for kindergarten in the fall. How did your son handle going to school? Did he need to be in special Ed classes or did go a good job in the regular class? As a parent what helped him adjust?

Posted at 1:25 p.m. on March 22, 2012

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