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.
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!
Every time I read one of your posts, I am inspired by the unconditional, unforgiving and determined show of love and support that you give your children!
I agree with Anne, I’m amazed by your degree of love and committment; I wish I’d had that – I went thru my problems pretty much alone. Not a lot was known about disabilities when I was young, and I’m 53 yrs young now, still collecting pieces of my puzzle. When I finished 1st grade, my teacher told my mom I have dyslexia, and she wouldn’t pass me unless my mom agreed to work with me over the summer. Pretty alert teacher, tho – my mind’s-eye doesn’t turn letters/words backwards, which is the more common form – for me, letters, words, and even sentences disappear, move around on the page, and form themselves from other letters that are on the page. What my teacher was telling my mom wasn’t that she had to teach me to read, but that she had to teach me to recognize when what I read didn’t make sense, like ‘The green cow jumped over the moon’, or The cow over the moon’, she had to teach my 6-yr old mind to say, ‘wait – what?’ Now, I not only re-read, I scan to figure out where ‘green’ came from, and I’ll find it several lines further down on the page, or I’ll find most of the letters one or two lines below, and conclude that my minds-eye simply created the word where it didn’t exist. Then, in 6th grade, my teacher told my mom something was wrong, take me to a neurologist – turned out I had petit-mal epilepsy. Other than that, my parents didn’t know to keep seeking for answers, but I’ve come across information and have seen various doctors seeking help – talk about comorbity! I grew out of the epilepsy, but still have dyslexia and the numerical form, dysnumeria, I have asperger’s, adhd-inattentive, depression, I’m a slow learner, can’t organize or prioritize, poor balance and coordination, hand-speed and dexterity of a young child, sleep apnea, and gerd (reflux) – I have always, even as a skinny child, refluxed everything I ate and drank all the way up into my mouth. I remember realizing, at the age of 12, that it wasn’t normal, but nothing in my life was normal – I just went on with what I was doing…..I did have a head injury at the age of 4 to the left side of my forehead; I learned in your article, that might explain the problems with organizing and prioritizing…I’ll have to check that out…what I can’t seem to find is information on how to live with these things, so I make my own solutions, like plastic bags hanging from the front door handle so I remember to take something with me the next day, leave my keys in the refrigerator with my lunch – that works, as long as I remember that’s where I put my keys – lol!
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