Tag Archives: ASD

Words I Wish I Never Heard: Comorbidity

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When a parent receives the news that his or her child has an autism spectrum disorder, only one word sticks in the brain: autism. It’s a scary word, filled with mystery and foreboding, and it takes a while for parents to wrap their brains around what it means for their child.

But over time, the parents do get used to the word and the various ways it is used—autism, autistic, autism spectrum, ASD, etc. They also get used to the way their child manifests the various social, language, and emotional symptoms that are part of the autism spectrum. More or less, they begin to make peace with the diagnosis. They learn how to reorder their lives to accommodate their child’s special needs, and they do everything they can to help their child grow and thrive. They grieve the loss of what might have been, and begin to look forward to what will be—with all of its highs and lows.

That’s all well and good. But over time, other words begin showing up and demand entry into their vocabulary. Words that bring with them a host of new challenges, fears, and road blocks. Words like stimming and perseveration become part of the parents’ everyday conversation. They are part of the universe of autism spectrum disorders, and every child touched with ASD manifests these behaviors in one way or another.

But there’s another word that shows up, whether early or late, and it has the potential to eclipse all its rivals: comorbidity. Even the sound of the word is chilling, with its hints of gloom and even death—to be morbid with, or something like that.

But while comorbidity is not a pleasant word, neither is it fatal. The definition runs like this: “the simultaneous presence of two chronic diseases or conditions in a patient.” It means that a person may carry two or more psychological or developmental diagnoses, as in the following sentence: “Bobby has a primary diagnosis of attention-deficit disorder, and a comorbid diagnosis of obsessive-compulsive disorder.”

ASD and Comorbidity.

According to a recent study done at Boston University, the rate of comorbidity in people with ASD is frighteningly high. The study found that:

44% of children with autism also had some kind of specific phobia, like fear of crowds.

37% had obsessive-compulsive disorder

31% had ADHD, and

25% had depression.

In fact, according to the researchers, “Seventy-two percent of the children in our study had at least one DSM-IV Axis I psychiatric disorder in addition to autism.”

More than 30% had two disorders comorbid with autism.

And nearly 10% had three comorbid conditions.

Even more chilling was this statement:

The frequency of multiple comorbid diagnosis we report is likely to be an underestimate. Parents were less likely to complete the later sections of the interview when multiple types of psychopathology were present in their child because it typically took longer to complete the interview.

No one knows exactly why the comorbidity rate is so high among people with ASD. Is it a brain chemistry problem? Or does dealing with ASD cause other disorders like depression and OCD? The jury is still out on this, and it may be for quite some time.

So not only do people with ASD have to navigate the troubled waters of autism; most of them also have to deal with other challenges. And what’s worse is that these comorbid disorders don’t just lurk in the background. They can often become the primary concern.

Paralyzing Depression.

This has definitely been our situation for the past few months. One of our sons has been diagnosed with depression, general anxiety disorder, and executive dysfunction, along with an inattentive type of ADHD. And as I said above, these comorbidities have a way of overshadowing the ASD deficits.

In this boy’s case, his depression and anxiety have become so strong that they have affected him physically, not just emotionally. A couple of months ago, for instance, he became so anxious that his legs literally shut down. He couldn’t walk. He couldn’t feel anything in them. He couldn’t move them at all. Two days in the hospital, an MRI, and a neurological work-up revealed absolutely nothing organic at the root of his paralysis. It was completely stress related, “all in his mind,” but not in a conscious way at all.

So here’s the challenge: do you treat the depression? Of course you do. But what if the stress is caused by the challenges this boy faces because of his ASD? You have to help him deal not just with his stress but also with the ASD issues that caused it in the first place. In this boy’s case, he has a hard time coping with all the noise and chaos of the crowded hallways in his school. It’s such an assault on his senses that it turns him into a jittery mess.

He has to deal, as well, with the social awkwardness that comes from his communication deficits. Classmates just don’t get him, and he doesn’t get them, so he feels his otherness deeply. All he needs is a couple of thoughtless remarks from his adolescent peers, and he’s off to the races. No wonder his body shut down last November! It’s as if his legs were telling him, “We can’t take any more. Please give us a break!”

So here we are, two months and nearly three thousand dollars in medical bills later, hoping that we’ve got a handle on things. We’ve increased his time with a counselor. We’ve taken more steps at home to help him accept his ASD challenges. We’ve gone out of our way to make sure he knows how much we love him and enjoy him. Anything to help him extinguish the negative thoughts that are constantly seeking entrance into his mind.

A Box of Chocklits.

But there’s another thing about these comorbidities. Once you’ve got one under control, another one pops up. In this boy’s case, the depression seems to be staying in the background, but the ADHD has now taken center stage. Homework assignments are being missed. Important papers from school are not making their way to us. Simple things like hygiene and general self-care are being forgotten. Now, instead of managing his mental-health issues, Katie and I have become his surrogate frontal cortex—that part of the brain that manages organization, short-term memory, and executive function.

Every week seems to bring a different challenge, another selection from Forrest Gump’s box of chocklits. And all the time, the ASD remains in the background, a kind of cantus firmus that shapes every aspect of his life. Bit by bit, we’re helping him make sense of it all. Bit by bit, we’re giving him the tools he needs to face down these challenges. And bit by bit, he’s making progress. But it’s slow. It’s arduous. And it’s sometimes painful.

It’s also no wonder that he seeks escape in his video games—to the point of them becoming almost and OCD issue. Yup, another comorbidity!

When Near-Failure Is an Option

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A couple of days ago, I wrote about an episode at my daughter’s school where she was given the short end of the stick when it came time to make up a test she had missed. I’ve thought about it some more, and I realize that this little episode exposes a more general weakness in the way schools deal with high-functioning kids on the autism spectrum.

Looks Are Deceiving.

Kids like my girl look “normal.” They don’t bang their heads against the wall—at least not usually in public. They have average or above-average verbal skills. They are bright and sweet and innocent. They try hard to fly under the radar so that they won’t attract attention. But coping mechanisms like these often hide serious learning glitches and emotional imbalance.

As far as the school is concerned, there’s no need to worry about these kids. Not unless their parents push hard to get their kids special-ed services. And then, the most they are willing to do is place kids like these in “inclusion” classrooms—standard classrooms that are staffed with a teacher and an aide who floats around the room helping kids who need it. But that’s about as far as they go. No different approach to teaching kids with different brains. No sense of what it is that the kid needs. Just an obligation to pound the information into his or her head so that he or she can spit it out when it comes time for standardized testing. If the kid still isn’t doing well, despite the inclusion class, it’s his or her problem, not the school’s.

Hoop after Hoop after Hoop.

You see, schools consider inclusion to be a great, magnanimous gift they are bestowing upon these kids. So parents are made to feel greedy if they dare ask for anything else, like access to a guidance counselor or extra help in a challenging subject. Even if their child clearly needs it.

This begins very early on in the process. You have to jump through all kinds of hoops just to get an IEP for your child in the first place. In most cases, you literally have to wait for a child to fail before a school will do anything. As long as a student—no matter how smart—is pulling at least a D average in core classes, there is no need to do anything. He or she is “meeting standards.”

Never mind how hard it is for that kid to complete homework after working so hard to keep it together at school. Never mind how anxious, fearful, or even depressed that kid is becoming because of the stressful environment. Never mind that this kid is really, really bright and could tear the place up if given the chance. Nope. He has to fail first. And by the time that happens, so much ground has been lost—educationally, socially, and emotionally—that it’s a long, hard climb to get back on top of things.

“Are You Serious?”

And then come the humiliating meetings parents have with school administrators as they try to advocate for their children. There are the not-too-subtle insinuations that if you were a better parent, your child wouldn’t be failing. “All you have to do is use more charts and folders to keep her organized.” “Are you giving him consequences when he doesn’t do his homework?” “Well, if you didn’t have so many kids. . .”

There’s the attempt to blame the student. “She doesn’t need support. She’s just lazy.” “He simply needs to apply himself more.” “If he’d just do his homework, we wouldn’t be having this conversation.”

There’s the attempt to discount or diminish the situation. “I see that you have a diagnosis from a psychologist. Well, private practitioners tend to exaggerate things to keep you coming back. They’re more interested in their bottom line than anything else.” “It’s just a phase. My kids went through a tough patch as well. I’m sure he’ll pull out of it.” “Are you sure your child has autism? She seems fine to me.”

And then there’s this classic line: “Some kids just aren’t cut out for school.”

As If. . .

These are all things we’ve been told in parent-teacher conferences and at IEP meetings. As if we aren’t trying to teach our kids discipline and responsibility. As if we just want to milk the system for everything we can get out of it. As if we enjoy having to explain our kids’ challenges over and over again. As if we were under the spell of some Svengali-like psychologist who is milking us for every dollar we have.

But the reality is that no parent wants to go through any of this. I can’t tell you how many times I have felt a pit in my stomach when preparing for an IEP meeting or a parent-teacher conference. It’s not the exhilaration that I’ll be getting something special for my precious little child. It’s the dread of having to rehearse, yet again, the symptoms and the challenges that my kid faces. It’s the sober realization that I am not only responsible for educating my children. I’m also responsible for educating their educators so that they can see the way ASD affects my kids—and the way their teaching methods help or hurt them.

What disturbs me the most is that my kids are smart. They’re talented. They’re perceptive and creative and curious in their own way. But their teachers can’t see it because they’re hidebound by a one-size-fits-all approach to education. Their main goal is to get the kids ready for state-mandated standardized testing. So as long as they can get the right data into their kids’ brains—as long as their kids can regurgitate that data on a test—they have discharged their duties. And so any child whose brain is wired differently is left to flounder.

Just so long as he doesn’t fail, all is well. After all, isn’t that what inclusion classes are for? To keep on teaching him the same way—no matter how bad the results have been all along?

The Thrill of Victory

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Yes, I know it’s been a few months. But I’m back now. Believe me, I haven’t run out of things to say!

Anyway, something that happened at school with my oldest girl, and I felt I had to share it.

After years of working with the school, my daughter, a sixth-grader, finally has an IEP (Individualized Education Plan) that identifies her as being on the autism spectrum. IQ testing puts her just two points shy of gifted/genius, but she has glitches in the way she learns and processes information. She also has attention issues as well as the kind of anxiety that is not uncommon to kids on the spectrum. The world is so “other” for aspies like her, and they tend to be in a state of constant tension when outside of the comfort of home.

All this means that when tests come up in school, my daughter is supposed to be given extra time, and an aide is supposed to be made available to read her the questions and help her stay on task. That’s part of her IEP. It’s documented in paperwork required by the US Department of Education. It’s her legal right.

A Recipe for Failure.

Well, she missed a history test last week because she was out with strep. When she came back to school this Monday, her teacher sent her to the library to take the test. She was pretty confident going in, because she had done a bang-up job on this unit. She even earned a 100% on a major project related to the topic! I can’t tell you how proud she was when she saw that grade.

She bombed the test. Epically.

As soon as I found out, I e-mailed her teacher to investigate. It turns out that a number of things went wrong, which should never have occurred.

First, she was sent to the library—a very busy place filled with distractions—to take the test. Next, she was there all alone. There was no aide to help her. No one checked on her progress or answered any questions she might have had. No one even looked in on her during the hour-long test. And finally, she had to deal with a change in routine. This may not be a big problem for neurotypical kids, but any change like this—especially if it’s linked with something as scary as a major test—can send aspies like her into a tailspin.

In other words, this was a recipe for failure.

Daddy Goes to Battle.

When I asked about this, her teacher said that my girl could retake the test, but that it wouldn’t be given full weight because it was a do-over. The highest grade she could get was a 70. Then, to add insult to injury, the teacher told me that on the day of the test she had read the questions to everyone else in the class and made sure they stayed focused. So not only was my girl denied the accommodations she has a legal right to as a special-needs student, she didn’t even get the same help that her neurotypical peers got!

It took a few hot e-mails from me, but I finally made it clear that this teacher was not complying with my daughter’s IEP, and that my daughter deserved better than a chance at a C. Somewhat reluctantly, the teacher agreed to give her the test again, this time with the chance to earn full credit. I didn’t get an apology from the teacher, mind you. Much as I would have liked one, I knew better than to ask for the moon. I was just happy to have won on this one.

The Thrill of Victory.

Now I know that this isn’t a huge issue in the grand scheme of things. The teacher messed up, I brought it to her attention—politely but aggressively—and she fixed it. But it’s a battle I should never have had to wage. My daughter has an IEP for a reason, and her teachers are expected to comply with it.

I’m glad I waged this battle, though. It showed me that I need to be more pro-active when it comes to advocating for my kids. It showed me how quickly some teachers will back down when challenged. And best of all, it illustrated the oft-used saying: “You’re the only advocate your child has.”

Not to mention, it felt really, really good to have a victory under my belt!

Of Sore Thumbs and Personal Victories

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One of the benefits of living in a swing state during an election year is the high likelihood that one of the candidates or a spouse will show up at a rally pretty much right at your front door. That’s exactly what happened last weekend. Ann Romney, Michelle Obama, and Joe Biden were all within shouting distance of our humble town of Saint Johns, Florida.

Some may consider this a curse more than a blessing. But when I found out that Joe Biden was going to be in St. Augustine last Saturday, I was happy. This could be a great civics lesson for our oldest son. I even got his social studies teacher to approve extra credit if he went to the rally and wrote a report about it. So I headed to the local Obama headquarters to get tickets to the event, to be held at a school gym.

When we got there on Saturday morning, I knew we were in for a challenge. Due to heightened security, everyone had to be screened before they could enter—which meant we had to stand in a long line. As soon as he saw the crowd—and how slowly the line was moving—my boy’s face fell, and he began trying to get out of it.

“Please, let’s just go,” he said plaintively. “There are too many people. I’m really tired. You can’t force me to do this. I don’t need the extra credit. [He really did.] You’re just trying to make it hard for me.”

“Sorry, son. This is one of those situations when you have to do something. You’ll thank me later.”

Not This Time.

Normally, my boy would ramp up his protests, accuse me of a nefarious plot against him, and come up with some outrageous reasons why this just plain won’t work. But not this time. The fact that we were outside helped. It was a beautiful, sunny day, and the line was quiet. So he wasn’t feeling a barrage of negative sensations. It also helped that I kept scratching his back. He didn’t become cheerful, but neither did he explode.

We spent about an hour in line, moving at a glacial pace. Every now and then, he would offer some protest or excuse, but it was pretty mild. If anything, he just seemed glum. He’ll probably never admit to it, but I think he was intrigued with the prospect of being so close to someone so powerful.

When we got into the gym, my heart sank. There were no bleachers or seats of any kind. Instead, everyone was standing—very close together—and talking excitedly. There were already around 400 people inside, their voices echoing in that hollow, tinny way that only gymnasiums can create. Plus, a loudspeaker system was blaring upbeat music. And more and more people kept coming in. I wondered how in the world my son would make it through this thing.

Reluctant but Resigned.

Not to be deterred, I asked the people ahead of us if they would let us through so that my son could see. There were only a few children there, so they were very obliging: we made it right to the very front of the crowd. Not only did that give us a better view of the dais, but it also helped relieve some of his stress. He didn’t feel as hemmed in.

Still, he looked very uncomfortable. He kept his eyes down, his shoulders bunched, and his hands clenched. He asked a couple more times if we could leave, but I kept massaging his shoulders. This is important, I told him. This is part of our history and heritage as Americans. This is a valuable opportunity for him. This is going to happen. And you are going to write about it.

Considering the crowd and the noise and the seemingly endless wait, I was impressed with how well he was doing. His protests were meek, and he met my determination not with an equal and opposite force but with reluctant acceptance. Part of me felt bad for subjecting him to all of this, but I just couldn’t pass this up.

Are You Fired Up?

Not long after we got to the front, a series of warm-up acts graced the dais. A few local officials spoke, a campaign volunteer gave a personal testimony, and an Anglican priest offered a blessing. Each speaker (except for the priest) asked a variation on the question, “Are you fired up?” And, predictably, the audience responded with huge shouts and thunderous applause. I don’t know why I thought of it, but I almost instinctively placed my hands over Richard’s ears with every eruption—and then promptly returned to my massage as soon as the noise died down.

After about 20 minutes of these opening acts, it was announced that the vice president was about to come out. Just then, my son turned and pled with me, “Please, Dad. Let’s go home. I can’t take this any more. My stomach hurts. My head is killing me. My eyes are so sore.” He didn’t sound desperate, but he was clearly getting more upset. “Come on,” I replied. “This is what we came to see. He’s coming out now. Keep breathing and try to hold it together.”

Negotiations Proceeding Apace.

Then came the magic. He didn’t push back. He didn’t break down. He didn’t lash out. He strategized. “How about this?” he asked. “Let’s stay for just 15 minutes more. I can say I saw him, and I’ll have enough to write about.”

I was floored. My son was experiencing a huge sensory assault, but he was fighting it. He was engaging his intellect, not just giving in to the emotional cascade. At that moment, I realized that he wasn’t negotiating with me. He was negotiating with himself. He was telling himself, “You can do this. You don’t have to give in to the noise and the fear and the anger.”

I really wanted to hear the whole speech. I really wanted my son to shake the vice president’s hand. Heck, I wanted to shake his hand! But I couldn’t pass this up. “It’s a deal,” I said. With that, he turned back to the dais, tense but determined, while I continued alternating between massaging his shoulders and covering his ears.

Vice President Biden came out, flashed his toothy grin, and launched into his stump speech. And through joke after joke, through zinger after zinger, through applause line after applause line, my boy stood there, sad but focused. Not once during that whole time did he try to back out of our deal. Not once did he try to break away. Not once did he turn around and try to beg his way out of this. He made it through 15 grueling minutes, sullen but intact.

He Talked Back!

As soon as the time was over, we turned and left. Pushing through the crowd, we both heaved a huge sigh of relief. It was over. My thumbs were sore from all the massaging, but I was so proud of my son. It was the first time I saw him talk back to the fear and anxiety. It was the first time I saw him separate himself from the symptoms of ASD. It was the first time he saw himself as a fighter and not a victim. I saw him take an important step toward being an independent young man who wasn’t defined by ASD.

I didn’t tell him all of this right then and there. He seemed too battle-weary for another discussion. But I could tell that he sensed the victory as well. There was a new spring in his step as he walked into the sunlight of a beautiful autumn afternoon.