Transition to Adulthood

When I worked at Maine Medical Center[1], my office-mate said he had a twin sister.

I was impressed. “Are you identical twins?” I asked naively.

“Think about it,” Dennis said. “She’s my sister.”

I didn’t get it then, and maybe you don’t either. To me, “identical” meant that Dennis’ twin sister would share his brown eyes, dark hair, tall, lean body type and Canuck facial features. I imagined Dennis’ twin sister to be the female version of Dennis.

The fact is, there are two types of twins: monozygotic, and dizygotic. In monozygotic twins, there was one egg and one sperm, resulting in a zygote, the earliest developmental stage of an embryo. The zygote then splits into two identical embryos, who then become identical twins. Identical twins share the same DNA and pretty much everything organic.

Dizygotic twins are the result of two ovum and two sperm that each succeed in fertilization, producing two embryos. The resulting siblings are no more or less genetically alike than any two other siblings that did not share a pregnancy. Dizygotic twins, more commonly known as fraternal twins, are the type that “run in families,” due to a genetic predisposition of some women in families to release more than one egg when ovulating. Dizygotic twins are also more common today because of fertility treatments, like Clomid.

Jason and Joshua are fraternal twins. They are no more genetically alike than any other siblings, which in general means they share about 50% of the same gene makeup. As efficient as it might have been to raise the boys and prepare for their adulthood with one strategy times two, this was not the case at all.

In 1982, Sophie’s Choice was a movie I could watch with only one eye open and a box of tissues. The term “Sophie’s choice” has come to mean an “impossibly difficult choice, especially when forced upon someone. The choice is between two unbearable options, and it’s essentially a no-win situation.”[2]

“Sophie’s Choice” is centered on a scene in Auschwitz where Sophie has just arrived with her ten-year old son and her seven-year old daughter; a sadistic doctor, presumably Doctor Mengele, tells her that she can only bring one of her children [into the labor camp]; one will be allowed to live, while the other is to be killed.

As a mother, Sophie adores both of her children and can’t make this agonizing choice… until several soldiers force her, and she hastily gives her daughter to them, sobbing as they take her little girl away.”[3]

Steve and I of course didn’t have to “choose” autism for our kids, nor did we choose which twin was blessed with more potential than the other. In fact when they were toddlers, shortly after diagnosis, it appeared Joshua was the higher functioning child. Josh’s eye contact was steady, and he hit developmental milestones well before Jason. Yet as time went on, it was clear that the boys were so very different from one another in almost every way: language, motor skills, adaptive living skills, and connected-ness to us as parents.

We didn’t choose this disparity, but the result still felt as though we had. It was soul-destroyingly painful to slowly watch as, despite pouring all of our efforts into both boys, Jason pulled ahead of Josh with increasing speed. It wasn’t “fair.” Like if you have some typically developing kids and one or more who have autism, or Cerebral Palsy, or anything other than perfect health, it isn’t “fair.” Or if you have only one child, and that child is blind or deaf, or has leukemia, it’s-not-fair.

Life is not fair, our parents all told us. Get used to it.

As with all grief, we eventually adjusted, and adapted our vision and strategies to each unique, individual little boy.

Those little boys are now young men, and we believe young men are expected to get out on their own.  What that looks like is different for everyone.

I think one of the biggest challenges to having a child with autism is we have no clear picture of what we can expect for this individual as an adult. Other people think about their children becoming doctors, mechanics, artists, CEOs and plumbers. People who think about the future of their child with autism have no clue. And that vacuum of imagination is frightening.

By the time the boys were 14, Josh was becoming increasingly self injurious. We had some of the best behavior analytic minds in the country doing functional behavioral assessments to seek the functions of these behaviors, and we did extract some direction from each process. But each time our behavioral adjustments eventually fell short. I even went back to school and became a BCBA myself, on the logic that maybe if we understood behavior better, we could diminish these outbursts.

Behavior analysts learn one of the first things you do in seeking the functions of behavior is to rule in or out any biological causes. If your dog keeps walking into walls, get his eyes checked. If your spouse keeps saying “Huh? What did you say?” have his hearing evaluated.

Behavior analysts also learn that the ability of the medical profession to detect and measure physical information is only as good as our tools with which to do so. And that, I fear, is what holds us back when it comes to the brain.

While we have made tremendous strides in understanding the human brain, there is so much we still do not know. Josh’s outbursts literally seemed to “come from nowhere,” a term which red flags me every time I hear it, so I am loathe to use it here. When it comes to human behavior, that which is not a result of some internal state is, as far as we know, the result of some learning history. When we touch a hot stove, we pull our hand away instinctively, and the blister forms. We don’t think about this, we don’t will it to happen, it just does.

On the other hand, having once been burned by the stove, we add that experience to our learning history and acquire a learned behavior, such as wearing mitts when being close to the burner.

The more we looked for the functions of Josh’s self injury, the more it became increasingly likely there was some organic cause. I videotaped some of Josh’s episodes, during which he was oblivious to those around him, and increasingly forceful ramming his head through glass windows and sheetrock walls. He seemed to favor the right side of his forehead, just above his eye.

Finally, our neurologist reviewed the video, and suggested Josh presented like someone having “cluster headaches.”

Wikipedia says “Cluster headaches are recurring bouts of excruciating unilateral headache attacks of extreme intensity. . . The onset of an attack is rapid, and most often without preliminary signs that are characteristic in migraine . . . The pain of a cluster headache is remarkably greater than in other headache conditions, including severe migraine. The term “headache” does not adequately convey the severity of the condition; the disease may be the most painful condition known to medical science. The pain is described as burning, stabbing, boring or squeezing, and may be located near or behind the eye.  Those with cluster headaches may experience suicidal thoughts during an attack as a result of the pain.”[4]

Josh was nonverbal, so he could not talk about whatever was going on inside of him. While he could communicate with symbols, that skill had only advanced to convey needs and wants. All we knew was Josh appeared to be in some kind of horrific pain, one that caused him to pound his head against windows, doors, walls, the floor, and any hard surface he could reach. When we intervened to protect him, Josh would turn on us, until we were sufficiently deflected to give him access to hard surfaces again. The episodes would last 10 to 15 minutes; then Josh would de-escalate. A few minutes later, he’d be mellow, although not, perhaps, happy. These episodes seemed to happen very regularly between 5:30 and 6:30 at night. We later learned that cluster headaches are sometimes called “alarm clock” headaches, because they can strike at a precise time during the day or night.

Then Josh started having seizures—grand mal seizures. The kind of seizures that throw someone to the floor with spasms, eyes rolling to the back of his head. The first time this happened, we heard a funny rhythmic sound in the hallway. Josh had seized next to the plastic laundry hamper by the boys’ rooms, and as his legs jerked back and forth, they thumped the laundry hamper against the wall. When we found Josh, we honestly didn’t know whether he would die, right there, right then, right before our eyes.

We began to realize Josh most likely would need some level of care for the rest of his life.

This brought more grief, of course, but we know one eventually habituates to such trauma. If Josh would be in a “group home” someday, I needed to know if they were as bad as I thought of them to be. One thing I was learning on this journey was to face our fears head on, and then do as the Marines do: adapt, improvise, and overcome.  The first thing the Marines do in a crisis, if they can, is gain intelligence. They send out a scouting party, they reconnoiter.

I packed my kit bag, put on my game face, and set out to see what we would see at these group homes.

[1] I trained staff how to use computers

[2] http://www.urbandictionary.com/define.php?term=Sophie%27s+choice

[3] http://www.urbandictionary.com/define.php?term=Sophie%27s+choice

[4] http://en.wikipedia.org/wiki/Cluster_headache