One of the things that can make autism perplexing — and challenging — is odd behaviors that range from distracting to dangerous. Grimacing, repetitive motions, head-banging or other self-injury, meltdowns, even aggression: These behaviors are so common in kids on the spectrum that they’ve become part of the profile of the disorder. We often don’t know what they mean and we assume that they’re characteristics of autism.
But Margaret Bauman, a pediatric neurologist who has been studying and treating children with autism for 25 years, argues that some of the difficult behaviors associated with autism are actually caused by other medical issues that have gone unrecognized.
Dr. Bauman uses as an example a young woman she treated who would habitually twist her torso to the side and nod her head in a kind of spasm. It had been assumed to be some kind of tic or seizure. But after examination it turned out that she was suffering from gastrointestinal distress. The spasmodic twisting motion is called Sandifer’s syndrome, and it’s a way to stop stomach acid from reaching the esophagus, where it causes pain. Once this young woman was treated for the acid reflux problem, this agitated behavior stopped.
Another child Dr. Bauman treated chronically refused to go to bed. Every time she lay down she bounced up again and tried to get off the bed, fighting caregivers who tried to coax her to lie back down. It was a battle every night. But it turned out that she, too, had severe acid reflux that caused her distress when she was lying down. Again, treatment for the medical issue solved her bedtime behavior problem.
Dr. Bauman reports that children with autism who see the gastroenterologist are not infrequently found to have severe, clearly painful lesions from acid reflux. Other things these kids might be experiencing are constipation, allergies, eczema, tonsillitis, menstrual cramps, ear infections, urinary tract infections, injuries, and bone fractures.
Medical problems overlooked
It’s not unusual for medical problems to be overlooked in kids with autism, especially those who are nonverbal.
First, kids on the spectrum may not present with the same symptoms we are used to seeing in typically developing kids. For instance, while other kids with a stomach ailment might have vomiting and diarrhea, kids on the spectrum might just experience pain.
Also, kids with ASD often can’t identify the source of the pain or discomfort effectively. They may lack the cognitive skills to sort out what they’re feeling, or the communication skills to express it — and not only those who are nonverbal. And since many kids on the spectrum have sensory processing problems, they may not be able to identify where the pain or discomfort is coming from. When a child on the spectrum says “My head hurts,” he could have a stomach ache rather than a headache. It may just be his way of saying, “I don’t feel well.”
But another reason caregivers miss signs of physical illness, Dr. Bauman argues, is that these behaviors are so associated with autism that they’re unremarkable. A spasm might be interpreted as a seizure, when, instead, it’s a response to pain. “Not everything that twitches is a seizure,” she notes. “It could be a child’s attempt to alleviate distress. Even repetitive or stereotypic behaviors may not be inherent to the disorder.”
Behaviors potentially indicating a medical problem include:
- Gulping or grimacing
- Tapping the chest or stomach
- Pressing on the abdomen
- Refusing to sleep
- Repetitive motions
- Self-injury like head-banging or hitting yourself
Why would a physical illness cause a child to melt down or lash out? All kids exhibit more negative behaviors when they don’t feel well, Dr. Bauman notes, and kids on the spectrum may explode out of frustration that they are in pain and don’t know how to communicate it, or make it stop.
Look for changes
For a parent or caregiver, the key is to be alert for increases in negative behaviors, she said, or new, unusual, seemingly inexplicable behaviors that seem to come “out of the blue.” Watch for an increase in severity of things like self-injury and aggression. “Don’t assume that this behavior is just ASD behavior, ” she adds, “that it’s psychiatric or cognitive in origin.”
Similarly, Dr. Bauman cautions, medical problems should explored before psychiatric medication is considered. “Psychiatric medications should not be the first line of defense for these difficult behaviors.”
Kids with autism deserve appropriate health care, she notes. It can be challenging to find medical practitioners who are good at diagnosing them, but the good news is that many of these medical conditions — and hence the behaviors they are prompting — are treatable.