As I cruise the Bloggosphere and the Twitterverse, names I’m pretty sure I didn’t make up, I come across ideas for posts and things that provoke emotion and thought. This is one such example. Snagglebox wrote up a great list of the
“7 Important Ways That Autism Can Impact Medical Care”
His information is excellent, and his rationale sound. It made me think, however, how hard it is to generalize anything for kids on the spectrum. This is where dealing with ASD is so much different than Orthopedics. I’m sure there’s a well-used, well-established protocol for knee replacement, that everybody gets taught in school. People with autism are so different, and their own personal autism so unique, that what works for one may not work for another.
So, now that you’ve been referred to Snagglebox’s post, I’m going to modify it for Jacob, in efforts to personalize the clinical information, and to allow you greater insight into “our” particular flavor of autism.
Seven ways Jake’s Autism Impacts His Medical Care
Jacob does not seek help. When he had a painful broken tooth, he did not cry or tell us that there was a problem. He got very picky as to which foods he ate, and seemed overly sensitive to tooth brushing. These were our clues. The tooth was far enough back that it wasn’t easy to see, and a new one was growing in underneath, breaking up the baby tooth as it came. We had him see a dentist, who assured us things would work themselves out. Knowing Jake, and having intimate knowledge of his non-verbal communication, was the only way anyone would know something was wrong.
Reporting & Treating Pain
This echoes the last section. He’s not one for reporting pain. Due to his own sensory processing issues, he may not recognize pain like we do. He is very tolerant of cold – it doesn’t seem to bother him. He may have a belly ache, but register this as something else. It is very hard to treat non-specific symptoms, because what looks like a headache to us, may be abdominal cramps to him. I refer you to Tragedy Strikes, where I discuss Jake’s response to extreme pain. He did not scream and yell, he went catatonic.
Jake CANNOT take pills. He’s never taken as much as a single tablet in his eleven years. He had a crazy hoarse voice and persistent cough, but wouldn’t take cough syrup. I held him down, pried his mouth open, and dropped a quick-disolve tab onto his tongue. He threw up. We can put 2 tsp of oral suspension in a half-gallon of Kool-Aid, and he can sniff it out. When he’s been very feverish, I’ve had to use Tylenol suppositories to bring down his temperature. He’s big enough that I have to use two. It’s a terrible violation, but it has to be done. I don’t want to think about when he’s 16 and I’m 40. He’ll probably be able to kick my butt by then, and we’ll be out of options.
Talk about invasive! A bright light in your eyes, a crushing squeeze for your arm, a stick in your mouth that holds your tongue down, and a cold stethoscope probing your trunk from both sides. Not to mention the otoscope in your ear or up your nose. What’s not to love? We’re at the point where we’re treating symptoms as they arise. Recognizing the symptoms, as discussed above, is going to be the challenge. Specialized treatments are especially hard to come by, but necessary. Jake sees a optometrist in Waterville (120 miles away), and his dentist is an hour away. It’s taken 4 or more sessions with the dentist for Jake to allow MOST of an oral exam.
We’ve covered Jake’s response to health emergencies with Tragedy Strikes, but let me give you a little more. We were fortunate enough to have the rescuer/EMT be someone Jake is very familiar with. Those odds are low. Imagine being a young man with autism, being in the kind of physical discomfort that constitutes a health emergency, then being in an environment that smells like an ambulance or hospital, surrounded by scurrying people you don’t know, and possibly being subject to the flashing lights and blaring horns of emergency response vehicles. Scary stuff.
Improperly Trained Practitioners
Most clinicians today have at least a basic awareness of autism, but it’s so unique and individualized, knowing how to handle any one person safely and respectfully can be almost impossible. Remember that at the heart of autism lies a receptive/expressive language disorder. Add pain and fear to the mix, and communication can be much harder than usual. Jake would be completely unable to advocate for himself if alone. It’s my biggest fear that he’ll be riding around the block on his bike, get struck by a car, and not be able to convey who he is or who his parents are to the motorist. Even the best trained practitioner won’t stand a chance in this case.
Symptoms Dismissed as Autistic Behavior
Snagglebox makes excellent points likening stimming behaviors with actual medical problems – rocking, flapping, aggression, just to name a few. We have not yet experienced this. We’ve had the experience where medical testing and exams are just passed over and/or deferred. A clinician once told us that we were just going to have to be reactive rather than proactive in Jake’s case. He would not tolerate some of the usual screening that allows for early intervention. I’m not sure how he’s ever going to handle a colonoscopy, for example. He can’t sit through a set of dental X-rays. If he developed numbness in his extremities – would we notice? He’s already quite resilient to cold. If he got an ulcer, and it caused him to have a lack of appetite – would we notice? His eating is already quite variable.
Moral Of The Story (Tips for Clinicians)
Allow greater access for family members of people with autism. These family members know the individual much better than any clinician ever could, and will recognize when things “aren’t quite right” long before modern medicine ever will. Take extra time and care with special needs patients. Provide for quiet, minimally traveled areas for examination and intervention. Consider alternative treatments (beyond pills) that can meet medical goals.
As always, remember that if you’ve seen one kid with autism, you’ve seen one kid with autism.