The Needle in the Haystack
As far back as I can remember, since Lucas was born, I have had to play detective concerning medical issues. Most children will cry and say, “My stomach hurts!”. Lucas never would. The only way that I knew that something was wrong was by keen observation through the eyes of a mother and a nurse. Even when I realized that he was in pain or some other distress, I still had to discover the source of his discomfort. My grandmother once told me to tell him to put his hand where “it” hurt. That almost always worked. The problem has always been that medical issues tend to worsen in the time that it takes to discover what is bothering him. A verbally normal child may tell you that they have a sore throat and a headache while the autistic individual may not. By the time that you discover that he has the flu, there may be complications.
While some people with autism seem to be able to tolerate extreme physical discomfort, the truth is, they may be experiencing pain in a much more extreme way than others. (1) Lucas does occasionally ask the question, “Why do I have to live with so much pain?” and yet has great difficulty explaining what he is talking about. When I began studying for this article, I anticipated that it would be uncomfortable. I had a feeling that I would discover truths that I had rather not know. I did. Although autistic individuals do sometimes experience pain intensely, because they usually don’t communicate well, sometimes serious health problems are overlooked. On the average, people with combined autism AND learning disabilities die between 10 and 20 years prematurely (2) Since they may have a communication deficit, they may be experiencing signs and symptoms that something is gravely wrong for years and no one knows, so the symptoms may worsen to the point of critical illness before any abnormality is discovered.
There is such a wide spectrum of autistic individuals that the same rules or statements don’t apply to them as a group, but one thing is true. They share a problem with communication in almost every case. There is an often cited case of a young man named Timothy who became agitated and began slapping his face. When observant staff in the facility where he was staying took him to the dentist, an infected root canal was discovered and after antibiotic treatment, his behavior returned to normal.(3) If that oral infection had not been discovered, serious acceleration of the infection and systemic infection could have soon followed. That kind of infection, or sepsis, is life-threatening. In a facility, or home, around people who were not that observant, Timothy may have died. The behavioral symptoms were merely the tip of the iceberg with serious danger hidden underneath. Lucas began having pre-cancerous moles at age 16. I noticed a dark, flat mole that just didn’t look right and made him an appointment with his dermatologist. It was severe dysplasia. That’s well on it’s way to becoming melanoma. Since then, he has had several moles removed, some of which were dysplastic. If no one had noticed that first mole that he had removed, it would most likely have been melanoma in a short time. Since that was 10 years ago, it is doubtful that Lucas would still be living had it not been removed. If melanoma isn’t treated, it can kill quickly and even with treatment, the prognosis can be dismal. Early detection is paramount.
As a caregiver, or in my case Mom, you have the ability to change this for your person of interest. Even if your child is adult, remember that you may be the only one that will realize the significance of some things that can be visualized such as moles, rashes, abrasions, bruises or insect bites. Abrasions and bruises may indicate that your child has had a fall and alert you to the possibility of other unseen injuries such as contusions, concussions or broken bones. Moles must be observed for changes and should be examined by a doctor to establish a baseline, rashes need to be diagnosed. Toxic insect bites need treatment. Watch for boils and abscesses because as your autistic child becomes an adult, if their grooming is not good, they will be at greater risk for these and they can cause systemic infections. I have even known of an individual with a rattlesnake bite who was oblivious to having been bitten. An observer would have noticed the peculiar fang marks on the inner knee. You are your child’s health advocate. You may be the only one who notices a cough, runny nose, flushed face or raspy voice. Speak up and when he gets older, keep speaking up. I have found that when I tell the doctors that my son is autistic, they are content to allow me to have access to all of his information as long as the proper paperwork is filed. Depending on where you live, you may need Power of Attorney. There are a few media items that can be of help such as Books Beyond Words which is a picture guide to many health related issues. You can also let your child point to the face that best describes his pain on the chart below. With your help, your child can navigate his health much more efficiently.