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.
Several years ago, back in my Navy career, I spent five years in a Special Operations helicopter command, Helicopter Combat Support Special Squadron 4, where our mission was Combat Search and Rescue along with helicopter support of Navy SEAL teams such as aerial gunnery and insertion/extraction operations. Because of the nature of our mission, we were on a 72 hour contingency to deploy anywhere in the world in support of SEAL operations. This tour of duty was quite extreme and very demanding because of our operating tempo for both training and real world hostilities which there never seems to be a shortage of. One month we could be training in the hot desert environment out in Fallon, Nevada, another month we might be in training in the extreme cold of Vermont in the winter, or close to the Arctic Circle in Norway. We could find ourselves operating out of tents even in extreme weather conditions, or we might find ourselves operating from a Navy ship. No matter our base of operations, we always had to be prepared.
You may be wondering about now, what does all of this military stuff have to do with cancer and early detection? In this command, we were always prepared to face any foe under any circumstance. The pressures of our operations made it possible for us to deal with any and all dangerous circumstances life might throw at us. Our training for any and every type of hostility known to man, meant we were proactive in facing these dangers with the confidence that we would always prevail no matter how hard the fight. We were HCS-4 Red Wolves, we were one of the only two most elite helicopter squadrons in the world with our unique mission. Navy SEALS are the most elite fighting force the world has ever known, they only rely on the most elite for their support.
I might have a tough exterior, but inside I am still human with human emotions the same as you. I love my dear wife, she is my best friend in the world, she is my everything. So, the diagnosis of breast cancer was a hard punch to the gut which has had me being somewhat of an emotional wreck over the last couple of days. This beautiful woman has already endured a hysterectomy because of a uterine cancer 30 years ago in the early years of our marriage. And then she underwent the surgical knife once again for vaginal cancer a couple years ago. She still has quarterly cancer checks for the last round of cancer. Now, here we are today, after taking in her brother who is suffering liver cancer, we have received this diagnosis of breast cancer earlier this week. While the diagnosis is quite upsetting, it is also refreshing to know that early detection is the key to beating it, as we have in the past. We are fighters.
Coincidentally, this morning as I checked my Facebook page, I saw a post by my good friend Kenny who has written about finding that he had prostrate cancer from a routine screening. Seeing that reassured me that my muse this morning to write about early detection and screening was the right subject at the right time.
From my good friend Ken LaMaster:
A few months back a very dear friend of mine shared that she was facing an uncertain battle with cancer that her doctors had found. Upon her acknowledging what she might and might not be facing she shared her prognosis with her friends on Facebook. Upon sharing this with her friends she received an overwhelming amount of love, support, well wishes and prayers. Her wish above all us was for her friends who hadn’t had a physical in some time to please do so. It had been 40 years since I had one and I felt compelled to follow through with my dear friends request. I underwent a physical, my first colonoscopy, and prostate exam along with a multitude of blood test etc. In all that it was discovered that my PSA was elevated to 4.7. As a precaution I was directed to an appointment with Dr. Holmes of the KCUC at St. Luke’s Hospital. Approximately three weeks transpire before I see Dr. Holmes where he did additional blood and urine test along with another prostate and bladder exam. In the three short weeks my PSA level had catapulted to 7.0. A biopsy was ordered and was completed almost three weeks later. Today I received the results. After the hardest couple of months of my life including the past ten days I was declared cancer free. A few of my friends, family and associates knew of this and I received many well wishes, lots of love and many prayers. Along the way my dear friend whose wish was everyone get a physical found out her cancer was caught extremely early and she is on the mend. So it is time I pay it forward. My wish and my prayers are that each and everyone of you who have not had a physical for some time please go get one done. My friend and I would be extremely grateful and extend our love and prayers to each and everyone of you. I am extremely Thankful for my friends urging to do so, now its your turn. As they say, the life you save could be your own.
During a training operation once I was talking with a SEAL about physical fitness and training when he said something that has stuck with me to this day;
“We do not own our physical fitness, we only pay rent for it. Quit paying your rent, and you will lose it.”
This statement is such a huge truth. We must keep working at our fitness or we will not remain fit for long. This becomes even more evident when we not only neglect our physical fitness, but when we add insult to injury by neglecting our nutritional needs with unhealthy food choices too.
Is it enough to just eat clean and exercise? For younger people, this might be enough for a few years. But as our bodies age, it becomes more important to get regular check ups as many cancers and other ailments are not caught until it is too late to do much about them.
Colorectal cancer is one of the most treatable cancers. The overall 5-year survival rate for people is 64%. If the cancer is diagnosed at a localized stage, the survival rate is 90%. (1) Yet, Colorectal cancer is the second leading cause of cancer death in the United States for men and women combined. It is the third leading cause of cancer death in men and the third leading cause of cancer death in women. (1)
Think about this for a minute, the second leading cause of cancer death in America has a 90% survival rate with early detection.
The average 5-year survival rate for women with invasive breast cancer is 90%. The average 10-year survival rate is 83%. If the cancer is located only in the breast, the 5-year survival rate of women with breast cancer is 99%. Breast cancer is the second most common cause of death from cancer in women in the United States, after lung cancer. However, since 1989, the number of women who have died of breast cancer has steadily decreased thanks to early detection and treatment improvements. (2)
Again, early detection saves lives!
The 5-year survival rate for most men with local or regional prostate cancer is nearly 100%. For men diagnosed with prostate cancer that has spread to other parts of the body, the 5-year survival rate is 30%.
Prostate cancer is the second leading cause of cancer death in men in the United States. It is estimated that 31,620 deaths from this disease will occur this year. However, the death rate has dropped by more than half from 1993 to 2016. There are almost 3 million survivors of prostate cancer in the United States today. (3)
Can enough be said about early detection?
When I was a teenager, I was a Boy Scout. Our motto was “Always be prepared”. This motto carried forth into my military career where every day was a day of preparing for worse case scenarios. My days with Helicopter Combat Support Special Squadron 4, took this to a much higher level of preparedness. Being on a 72 hour contingency to deploy anywhere in the world in support of military special operations requires never slacking in your preparedness. For those of us who have lived with this kind of readiness, this type of lifestyle spills over into our personal lives in many aspects too. It is just a given that you prepare yourself to face the many challenges and struggles of life head on. If we want to live a healthy life of quality, we must prepare ourselves every day for what we might face by being proactive in our health.
Being proactive means to only consume a healthy diet and to exercise your body with a type of exercise that both suits you and that has been cleared by your doctor.
Being proactive means getting regular check ups by your doctor even when you feel fit and healthy. Check ups are less expensive than treatments for catastrophic ailments.
Being proactive means that you do not cave to those around you who do not believe that any of this is not necessary. These types are like crabs who will always want to pull you down to their level. If one does not support your health initiative, they are not a true friend.
Being proactive means that you meet challenges head on and that you do not avoid them.
Being proactive means you make it a point in learning positive lessons from your every endeavor and challenge. For example, I am a strength trainer who trains heavy with iron weights four days per week. My favorite exercise is the barbell squat. There is a positive lesson to be learned every time I get that heavy barbell on my back. I un-rack that weight, squat all the way down, and then stand back up. Yes, this lift being done with well over my own body weight is tougher than anything else I encounter in my day to day civilian life, yet I learn something about myself every time I do it. The lesson learned is;
Even with what seems to be the weight of the world crushing down on my body as I squat down, I can and will stand back up. Should I fail to get back up, I will regroup and try again and again until I can stand back up with it. I will pursue this until I am successful in my efforts as I know that if I can stand back up from a heavy squat, I can stand back up no matter what comes my way to weigh me down.
What gets me back up from a heavy squat besides brute strength and determination?
Preparation and intelligent training is what gets me back up.
As we face Loraine’s breast cancer we will become informed of all the treatment options available to her. We will be proactive in the fight. We will do our parts at getting her well instead of relying solely on her physicians to do their jobs. While the diagnosis sucks, we are fortunate with having early detection through being proactive.