Monthly Archives: February 2013

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!

Come, Lonely One

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As the season of Lent begins, I thought I’d go link to a post on the website for the Jesuit magazine America. On their Scripture blog, Fr. Terrance Klein, a professor at Bonaventure University wrote:

The grace of insight often seems to accompany great sorrow, the sort we suffer alone, because no other can fully feel our pain. . . . The 11th century Byzantine Christian monk, Symeon the New Theologian, viewed suffering in deeply personal terms: the loneliness of suffering was a form of intimacy with God. In his prayer to the Holy Spirit, he wrote, “Come Lonely One, to him who is alone.” . . . When suffering cannot be avoided, the Christian should do more than accept it with resignation. However long and arduous the effort to do so, we should receive suffering as a call to intimacy with the Man of Sorrows.

I like this reflection, because the image that Klein paints—an image of suffering as a call to intimacy with God—helps me make some sense out of the difficulties that my kids on the autism spectrum are facing and will likely face in the future.

At the risk of sounding maudlin, I know that my kids are going to encounter more challenges, more setbacks, and, to put it bluntly, more suffering in this world than their neurotypical peers. It’s just the way things are. They will never quite fit in; they will likely have fewer friends. Some of them may never marry or have children. They will be more alone than most of their peers. The world is unfair, and in some ways my kids got the short end of the stick.

But it’s not just the social aloneness they will face. There’s also the aloneness that comes from knowing that you’re different. You feel that difference deep down. But if you have an autism spectrum disorder, you may not know how to process it. You sense that people don’t “get” you. You’re not even sure that you “get” yourself. Even though you sense that it’s not true, you still can’t help feeling “less” than the people around you, and that causes an inner isolation that can get right down to the core of who you are

Accepting the Invitation.

According to Fr. Klein, you have two options when it comes to responding to this kind of aloneness. You can shrug your shoulders and accept it with a sad resignation. Or you can receive it as an invitation from God. My goal as a parent is to help my kids accept the invitation. I want to assure them that no matter how different they may feel, no matter how harshly they are judged, no matter how little they think they fit in, there is a deeper truth at work in their lives, a much more hopeful truth than the false truths they feel tempted to accept.

Here are some of the dimensions of this truth.

• There is a mystery to their autism—a mystery that involves an invitation to a deeper relationship with God. In their aloneness, my kids have a great opportunity to identify with, and to discover more deeply, Jesus, who was the loneliest man in history. They have the chance to understand that Jesus was more different than anyone else who walked the earth, but he never let his difference isolate him. Instead, he continued to pour out his life for other people, hoping to bring them closer to God. All this means  that my kids have the opportunity to find their stories in Jesus’ story. As isolated as they may feel, they have a unique opportunity to become men and women for others, just as he did.

• I believe that if they grow up in an environment of faith, people who face more than the “fair share” of hardships end up more reflective. They are able to look at the world from a critical distance, and to see life with a deeper and more stable set of priorities. This makes them more apt to come in touch with the deeper regions of the heart, where God dwells, and to find there the strength and good humor they will need for their challenging lives.

• Drawing from the writings of St. Symeon, Klein talks about the “grace of insight” that comes to those who suffer. It’s a grace that can make sufferers into prophetic voices and prophetic witnesses. This tells me that simply by the witness of their lives well lived, my kids can testify to a greater purpose and power than what the average person expects. They can point people to the deeper and more meaningful dimensions of life. In short, their inwardness, their relationship with God, can make my kids into signs of God’s presence and love—if they choose to accept his invitation

Why Not Why?

In an earlier post, I said that asking why so many of my kids have this challenge was not nearly as important as asking how I could help them make the most of it. Well, this post from Fr. Klein warns me not to be so sure. Why isn’t always a bad question to ask—and it’s not always a question God hates to answer.

And that’s a good thing, because the question won’t go away. Some of my kids are beginning to ask this question, so I may as well try my best to find some answers to help guide them.

In the mean time, it’s encouraging to know that God is with my children in a special way. As Fr. Klein wrote, no other person can fully feel their pain. But Jesus can. And he is inviting them to discover his answers to their questions. I only pray that I will be up to the task of helping them find the answers—to accept the invitation that God has given them.

So why did this happen? Is it possible that God has something important for my kids to accomplish? That he has invited them to know him with a special intimacy, and to become his prophetic voices in this world? I can’t rule this out. Of course, I don’t pretend that my kids are superior or more spiritual by nature. I have daily evidence to the contrary! But maybe, just maybe, they have a special calling to manifest Christ’s presence in the world. Maybe God gave them this cross so that his strength can shine through their weakness and otherness. Maybe he wants to teach them peace and intimacy with him in the face of their isolation so that they can radiate that peace to the people around them. In the mean time, I will continue to pray that Jesus, the Lonely One, will come to them when they feel the most alone.

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!