House Rules (47 page)

Doctor, this court has allowed Jacob to take sensory breaks when necessary. Can you explain what that is?

It‘s a way for Jacob to get away from the overstimulation that‘s upsetting him.

When he feels like he‘s spiraling out of control, he can remove himself and go to a place that‘s quiet and less chaotic. In school, he has a room where he can pull himself together again, and in court, he has the same type of area. Inside are all sorts of materials that Jacob can use to calm himself down from deep-pressure weighted blankets to a rope swing to fiber-optic lamps.

You said that kids with Asperger‘s have an affinity for rules. Is that true of Jacob?

Yes. For example, Jacob knows that school starts at eight-twelve A.M. and because of that rule, he is on time every day. However, one week his mother told him that he would be late for school because he had a dentist appointment. He had a meltdown, put his fist through a wall in his bedroom, and could not be calmed down enough to be taken to the dentist. In Jacob‘s mind, he was being asked to break a rule.

He punched in a wall? Do kids with Asperger‘s have a propensity for violence?

Oliver asks.

That‘s a myth. In fact, a child with Asperger‘s is more likely to
not
misbehave than neurotypical children are, simply because he knows that‘s the rule. However, a child with Asperger‘s also has a very low fight-or-flight threshold. If he feels cornered in any way verbally, physically, or emotionally he might either run or strike out blindly.

Have you ever seen Jacob do that?

Yes, Dr. Moon says. At school last year he was given detention for swearing at a teacher. Apparently a young woman tricked him into behaving inappropriately by saying she‘d be his friend if he did it. Afterward, he retaliated by shoving her and was suspended.

What triggered the violent response in Jacob?

Being belittled, I imagine.

Did you talk to him about the episode? Oliver asks.

I did.

Did you explain why his violent response wasn‘t appropriate?

Yes.

Do you think he understood that what he did was wrong?

She hesitates. Jacob‘s sense of right and wrong isn‘t based on an internalized moral code. It‘s based on what he has been told to do, or not to do. If you asked him whether it‘s right to hit someone, he would tell you no. However, he would also tell you that it‘s wrong to make fun of someone and in his mind, the young woman broke that rule first. When Jacob hit her, he was not thinking of how he might hurt her, or even of how his actions would be going against a rule of behavior. He was thinking of how she‘d hurt
him,
and he simply … reacted.

Oliver approaches the witness stand. Dr. Murano, if I told you that Jacob had argued with Jess Ogilvy two days before she died, and that she‘d told him to get lost, how would you think that had affected his behavior?

She shakes her head. Jess was very important to Jacob, and if they had a fight, he would have been extremely upset. In going to her house that day, he was clearly manifesting that he didn‘t know how to behave. He stuck to his routine rather than let the argument run its course. Most likely, Jacob‘s mind processed the fight like this:
Jess told me
to get lost. I can‘t possibly get lost because I always know where I am. Therefore she didn‘t
really mean what she said, so I will just go on as if she never said it.
Jacob would not have understood from Jess‘s language that she might truly not have wanted to see him. It‘s this inability to put himself in Jess‘s frame of mind that separates Jacob from his peers.

Whereas another child may just be socially awkward, Jacob is dissociated entirely from empathy, and his actions and perceptions revolve around his own needs. He never stopped to imagine what Jess was feeling; all he knew was how much she was hurting
him
by arguing with him.

Does Jacob know that it‘s against the law to commit murder?

Absolutely. With his fixation on forensic criminology, he probably could recite the legal statutes as well as you could, Mr. Bond. But for Jacob, self-preservation is the one inviolable rule, the one that trumps everything else. So just like he lost his temper with the girl at school who‘d humiliated him and truly didn‘t understand why that was problematic, given what she‘d done to
him
first well, I can only imagine that‘s what happened with Jess, too.

Suddenly Jacob stands up. I didn‘t lose my temper! he shouts, as my mother grabs his arm to make him sit down again.

Of course, the fact that he‘s losing his temper at this very second sort of negates what he‘s saying.

Control your client, Mr. Bond, the judge warns.

When Oliver turns around, he looks the way soldiers do in movies when they crest a hill and see a swarm of enemy forces below them and realize that, no matter what, they don‘t have a prayer. Jacob, he sighs. Sit down.

I need a break, Jacob yells.

Oliver looks at the judge. Your Honor? And then suddenly, the jury is being led out and Jacob is practically running to the sensory break room.

My father looks completely lost. What happens now?

We wait fifteen minutes.

Should I … Are you going to go back there with them?

I have, every time so far. I‘ve hung out in a corner, playing with some Koosh balls, while Jacob gets his act together. But now, I glance up at my father. Do what you want, I say. I‘m staying here.

In my first memory, I‘m really sick and I can‘t stop crying. Jacob is around six or seven, and he keeps asking my mother who has been up with me all night to get breakfast ready. It is early; the sun hasn‘t even come up yet.

I‘m hungry,
Jacob says.

I know, but I have to take care of Theo right now.

What‘s the matter with Theo?

His throat hurts, very bad.

There‘s a moment where Jacob takes this information in.
I bet if he had ice cream
his throat would feel better.

Jacob,
my mother says, stunned.
You‘re thinking about how Theo feels?

I don‘t want his throat to hurt,
Jacob says.

Ice cream! Ice cream!
I yell. It‘s not even really ice cream I‘m screaming for it‘s soy-based, like everything else in the freezer and fridge. But it‘s still something that‘s supposed to be a treat, not a breakfast food.

My mother gives in.
Okay. Ice cream,
she says. She puts me in my booster seat and gives me a bowl. She gives Jacob a bowl, too, and pats his head.
I‘m going to have to tell
Dr. Moon that you were looking out for your brother,
she says.

Jacob eats his ice cream.
Finally,
he says.
Peace and quiet.

My mother still holds that up as an example of Jacob transcending his Asperger‘s to exhibit empathy for his poor, sick kid brother.

Here‘s what I see, now that I‘m older:

Jacob got a bowl of ice cream for breakfast and didn‘t even have to be the one to beg for it.

Jacob got me to stop making a racket.

My brother wasn‘t trying to help me that day. He was trying to help himself.

Jacob

I am lying underneath the blanket that feels like a hundred hands pressing down on me, like I‘m deep at the bottom of the sea and cannot see the sun or hear what‘s happening on the shore.

I didn‘t lose my temper.

I don‘t know why Dr. Moon would think that.

I don‘t know why my mother didn‘t stand up and object. I don‘t know why Oliver isn‘t telling the truth.

I used to have nightmares where the sun was coming too close to the earth and I was the only one who knew it, because my skin could sense a change in temperature more accurately than anyone else‘s. No matter what I did to try to warn people, nobody ever listened to me, and eventually trees started to burst into flame and my family was burned alive. I would wake up and see the sunrise, and I‘d freak out all over again, because how could I really be sure that my nightmare had been a nightmare after all and not actually a premonition?

I think the same thing is happening now. After years of imagining I‘m an alien in this world with senses more acute than those of normal people, and with speech patterns that don‘t make sense to normal people, and behaviors that look odd on this planet but that, on my home planet, must be perfectly acceptable it has actually become true. Truth is a lie and lies are the truth. The members of the jury believe what they hear, not what‘s right in front of their eyes. And no one is listening, no matter how loud I am screaming inside my own head.

Emma

The space beneath the blanket feels like it has a heartbeat. In the dark, I find Jacob‘s hand and I squeeze it. Honey, I say, we have to go.

He turns to me. In the blackness I can see the reflection of his eyes. I didn‘t lose my temper with Jess, he mutters.

We can talk about that later …

I didn‘t hurt her, Jacob says.

I stop and stare at him. I want to believe him. God, I want to believe him. But then I imagine that quilt I sewed for him, wrapped around the body of a dead girl.

I didn‘t
mean
to hurt her, Jacob corrects.

Nobody looks into the face of a newborn son and imagines all the things that will go wrong in his life. Instead, you see nothing but possibility: his first smile, his first steps, his graduation, his wedding dance, his face when he is holding his own baby. With Jacob, I was constantly revising the milestones: when he willingly looks me in the eye, when he can accept a change in plans without falling apart, when he wears a shirt without meticulously cutting out the tag in the back. You don‘t love a child for what he does or doesn‘t do; you love him for who he is.

And even if he is a murderer, by design or by accident, he is still mine.

Not connecting with his peers, Helen Sharp says. Being the center of his own universe.

Self-preservation is the one inviolable rule. Temper tantrums and anger management issues

… Sounds to me, Dr. Murano, like Asperger‘s is the new
selfish.

No. It‘s not an unwillingness to consider someone else‘s feelings, it‘s an
inability
to do it.

Yet this is a relatively new diagnosis, isn‘t it?

It first appeared in the
DSM-IV
manual in 1994, but it wasn‘t new by any means.

There were plenty of people with Asperger‘s prior to that who simply weren‘t labeled.

Such as?

Steven Spielberg, the director. John Elder Robison, the author. Satoshi Tajiri, who created the Pokémon phenomenon. Peter Tork, of the band the Monkees. They were all diagnosed formally with Asperger‘s as adults.

And they are all extremely successful, aren‘t they? Helen asks.

It seems that way.

They‘ve led very productive lives interacting with other people?

I assume so.

Do you think any of them have trouble relating to others socially?

Yes, I do.

Do you think any of them might have experienced a moment where they were picked on, or felt marginalized?

I don‘t know, Ms. Sharp.

Really? Have you seen Peter Tork‘s old haircut? I‘ll go out on a limb and say yes, they have been teased. And yet none of these men with Asperger‘s is on trial for murder, are they?

No. Like I said, there isn‘t a causal link between Asperger‘s and violence.

If Asperger‘s doesn‘t make someone violent, how can it be an excuse for someone like Jacob committing a horrific act of violence?

Objection! Oliver says. That‘s prejudicial.

Sustained, the judge replies.

The prosecutor shrugs. Withdrawn. Dr. Murano, how did you formalize your diagnosis of Jacob‘s Asperger‘s?

I had an IQ test administered, and an assessment of adaptive skills, to see how Jacob would handle certain social situations. I did interviews with Emma Hunt and with his teachers, to get a sense of Jacob‘s history of behavior. Asperger‘s doesn‘t show up overnight. I saw videotapes of him prior to age two, when he was still meeting developmental milestones for neurotypical children, and then the subsequent decline in behavior and interpersonal connections. And I observed him during a number of sessions, both in my office and at his school in social settings.

There‘s no blood test, or any other scientific test, that can be administered to see if a child has Asperger‘s, is there?

No. It‘s based primarily on observation of repetitive behavior and interests, and a lack of social interaction that impairs everyday functioning, without a significant delay in language.

So … it‘s a judgment call?

Yes, Dr. Murano says. An educated one.

If Jacob had seen another psychiatrist, isn‘t it possible he or she might have determined that Jacob
doesn‘t
have Asperger‘s?

I highly doubt it. The diagnosis most often confused with Asperger‘s is attention deficit/hyperactivity disorder, and when they put Aspie kids on ADHD medicine and they don‘t respond, it‘s often clear that the diagnosis needs to be revisited.

So the criteria you used to diagnose Jacob were his inability to communicate with other people, his trouble reading social cues, his desire for routine and structure, and his fixation on certain topics?

Yes, that‘s about right, the psychiatrist says.

Say I have a seven-year-old who is completely obsessed with Power Rangers and who has to have his cookie and milk every night before bedtime, who isn‘t very good about telling me what happens in school every day or sharing his toys with his younger brother.

Does my seven-year-old have Asperger‘s?

Not necessarily. Let‘s say you have two three-year-olds in the sandbox. One says,

‗Look at my truck.‘ The other responds, ‗I have a doll.‘ That‘s parallel play, and it‘s normal at that age. But if you study those same two children at age eight, and one says, ‗Look at my truck,‘ the appropriate response is something like ‗That‘s a cool truck‘ or ‗Can I touch it?‘ or some other sentence that continues the interaction with the child who made the conversational overture. However, a kid with Asperger‘s might still say, in response, ‗I have a doll.‘ When the playmate walks away, the kid with Asperger‘s won‘t understand why. In his mind, he‘s responded to the sentence and kept the conversation going. He doesn‘t comprehend that what he said wasn‘t a valid rejoinder.