Limited Life Expectancy in Autism

 

The average life expectancy for a person with autism is 36. When I read that statistic online a couple of weeks ago, I was torn between skepticism and shock. As the parent of a 26-year-old son with autism, I needed to find answers. Do people with autism really die much younger than typical people? If so, why do they die at such a young age? What can we do to help our children lead longer and healthier lives?

With assistance from Google searches, I found an online article entitled “Why People with Autism Die at a Much Younger Age” written by David Mills and published in healthline on March 25, 2016. [To read this article, please click here.] This article references research published in The British Journal of Psychiatry in March 2016. [To read this research, please click here.] This research article, entitled “Premature mortality in autism spectrum disorder,” describes the results of a Swedish study of data between 1987 and 2009.

At the Karolinska Institute, neuropsychologist Tatja Hirvikoski and colleagues compared mortality rates in Sweden between 27,000 people with autism and 2.6 million typical people. The average age of death for the general population was 70 years old, whereas the average age of death for people with autism was 54 years old. If the person with autism also had a cognitive disability, the average age at death was just under 40 years old. Not surprisingly, Dr. Hirvikoski was “shocked and horrified” by these results.

Further research indicates that for lower functioning people with autism, the main cause of death was epilepsy, found in 20-40% of the autism population, as compared to only 1% of the general population. In higher functioning people with autism, this study found that the primary cause of death was suicide, which occurred at a rate nine times higher than that found in the general population.

In addition, the research discovered that people with autism died from a wide range of illnesses, including heart disease and cancer. The researchers suggested that these fatal illnesses could be caused by genetic factors or poor medical care or both. Those with autism who have impaired language and social skills may have difficulty communicating their symptoms to doctors, perhaps delaying diagnosis and treatment of the illnesses.

Parents of children with autism also note that difficulties with social and sensory issues create a great deal of stress that could lead to chronic illness. I would add that sleep problems common in autism could also contribute to poor overall health. Moreover, our experience with heavy metal toxicity in Alex leads me to wonder how many people with autism suffer from toxins that lead to chronic illness and cancer. Clearly, more research needs to be done in this area to find the cause of early fatal illness in autism.

Continuing my research on mortality and autism, I found an article online from Susan Scuttl published March 21, 2017, at CNN Health entitled “Children with autism 40 times more likely to die from injury, study says.” [To read this article, please click here.] This article summarizes data from research published May 2017 in the American Journal of Public Health. Written by Joseph Guan and Dr. Guohua Li, the article entitled “Injury Mortality in Individuals With Autism” focuses upon causes of fatal injuries in people with autism in the United States. [To read this research, please click here.]

Using 39 million U.S. death records from 1999-2014, the researchers found the death records of 1367 people with autism––1043 males and 324 females. Their data indicated that while the average age of death for the general population was 72 years old, the average life expectancy for a person with autism was only 36.2 years old.

Moreover, this data indicated that 28% of people with autism died from injuries, which is three times the rate of death by injury for the general population. In addition, the data showed that the average age that typical people died from injury was 55, while the average age for death by injury to a person with autism was only 29.

Three types of injuries were found to be responsible for a total of eighty percent of accidental deaths in people with autism: suffocation, asphyxiation, and drowning. Unlike the Swedish study, this research did not find high rates of suicide among adults with autism. Children with autism under the age of 15 were forty times more likely to die from injuries than their typical peers. The most common cause of fatal injury in children with autism is drowning, which causes 46% of accidental deaths, especially among children ages 5-7. Statistics indicate that nearly half of children with autism wander from places of safety, and they are often attracted to water, where sadly many of them drown. In the conclusion of this study, the researchers note, “Individuals with autism appear to be at a substantially heightened risk for death from injury.”

Whether the life expectancy for a person with autism is 29 or 36.2 or 40 or 54, depending upon the research data, any of these ages is much too young to die. Knowing how vulnerable Alex is, I always pray for God to keep him happy, healthy, and safe. Clearly, more research must be done to find better ways to treat health conditions in children and adults with autism and to protect them from dangers that could end their lives prematurely. Our society must take responsibility for meeting the special needs of children and adults with autism. Their lives depend upon it.

“Yea, though I walk through the valley of the shadow of death, I will fear no evil: for Thou art with me; Thy rod and Thy staff they comfort me.” Psalm 23:4

Venturing Out

 

In the past few weeks, Alex has developed an aversion to leaving the house. Since he usually loves going places, this is totally out of character for him. However, the thought of going out has caused him to have panic attacks, and to avert further distress, we have supported his decision to stay home. Amateur meteorologist that he is, Alex tells us that the weather is too cold and windy to go outside. The bitterly cold temperatures and subzero wind chills this month prove his logic correct. However, we also know that at some point he will need to leave the house, and we’ve wondered when he might be willing to venture outside.

Bless his heart, he has attempted to overcome his fears of going out, even being willing to put on his shoes and coat before deciding that he just can’t go. We’ve had him buckled in the car, and even gone a few blocks before he tells he needs to go home. Clearly, he has been dealing with some internal conflict because he seems disappointed that he can’t go places he wants to go. Essentially, “the spirit is willing, but the flesh is weak.”

Knowing that he has two appointments coming up in the next few weeks, I have wracked my brain trying to figure out someplace we could take him to get over his fears. His behavioral therapist felt that if he had a good experience of going out, Alex would be able to overcome his fears of leaving the house. Since the weather yesterday was warmer than it had been, the winds were calm, and the skies were clear, I knew we had to try one more time to get him in the car and go someplace. I decided we were going to take him to the lab to have his blood drawn before his upcoming six-month appointment with the nurse practitioner who oversees his medications.

While taking Alex for a blood draw may seem like a strange enticement to overcome his fears of leaving the house, he loves going to the lab and thinks it’s a grand adventure. The technicians there are very kind to him, and he is always cooperative for them. In our usual swift, coordinated efforts, Ed and I managed to get Alex out of the house, into the car, and to the lab without any protesting on his part. As we arrived at the lab, he didn’t seem at all anxious, and he walked quickly toward the door as if he didn’t have a care in the world. While I went to register him for the blood tests, Alex and Ed sat in the comfortable waiting room watching NBA highlights on a large screen television. Usually, checking in for tests at this lab is a simple task, and since we were the only ones there, I thought we were home free. I celebrated a little too early, though.

As I gave the information to the clerk, she began to question me about why Alex had not fasted for twelve hours. I explained to her that he has autism, and we have to do these tests when he is at his best, so we never do the twelve-hour fast. She wanted to push the point, and I more forcefully explained that his doctors understand why we do the tests without fasting and are fine with that. Then she was insistent that he could not do the test for one of his medications because he hadn’t waited twelve hours. Again, I explained that we always do the tests this way. Unconvinced, she told me she needed to call the lab technician to check if that was a problem. I told her that I could speak to the technician myself because I knew this was not a problem. Nonetheless, she called the technician who said it would be okay, just as I had told her.

While speaking with her, I realized the transitions I had made in my tone and attitude in the few minutes I was there. Although I had started with my usual pleasant and polite self, I found myself using my middle school teacher voice, the one that calmly yet firmly told students, “Do NOT put that pen in the pencil sharpener!” When that didn’t seem effective, I resorted to my mother’s voice. I’m not talking about the voice I use as Alex’s mother; I mean the voice of my own mother when she is perturbed that increases in volume and sarcasm. We both learned that from the master, her mother, my grandmother, whose ring I always wear to remind me never to take guff from anyone because she never did. Finally, I channeled the voices of my husband’s New York-born sisters who get things done because they don’t let anyone push them around. With all those strong women as models in my mind, I was finally able to convince the clerk that I knew what I was doing.

After all that, I thought things would move along smoothly. However, a change in insurance companies this month seemed to be a huge deal as she tried to input the new information. After several tries, she was able to get the insurance straightened out, and then I thought we were on our way. However, she also questioned the diagnostic code on the lab orders and said that it was incorrect. As I spouted off the code number for autism and the diagnosis of medication management, suddenly, the diagnostic code seemed to be all right. In the end, I resorted to my pleasant and polite voice, thanked her for her trouble, and wished her a nice evening. Thankfully, Ed and Alex were having a more enjoyable time in the waiting room watching television, and Alex had been remarkably patient and calm in this first outing in weeks.

Fortunately, we didn’t wait long before the lab technician came to get us, and she remembered Alex from a previous time. She was friendly and kind to him, and he did a fantastic job of answering her questions, being polite, and sitting calmly and patiently as she drew five vials of blood. Remarking about what a great job he did, she praised him as "the best patient" and told him to come back and see her anytime. Of course, Ed and I were very proud of Alex and how well he handled the situation, especially since going places had been causing such anxiety for him. Moreover, we were relieved that not only had he been cooperative about going to the lab, but he also had successfully done the tests that we needed to have run on him.

While we thought the hardest part of this outing would be getting Alex to go out, we didn’t anticipate that the registration, which is usually fast and easy, would be the most difficult. As the saying goes, “All’s well that ends well,” and we are delighted that he did so well remaining calm going out and throughout the lab tests. Now we hope and pray that his routine lab tests show that he’s healthy and that this successful trip out of the house marks the end of his anxiety about going places. If Alex can go have blood drawn without any fear, surely he can conquer his worries about going out in the windy winter weather.

“For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13

Teaching Mercy

 

Lately, Alex has been resistant to going places, seemingly anxious about leaving the house. This unwillingness to go places is out of character for him, especially considering that one of his summer goals was to “put lots of miles on Daddy’s car.” However, the recent stretch of single digit temperatures coupled with below zero wind chills would certainly explain his preference for staying home, rather than going outside in the bitter cold.

His reluctance to get in the car, though, seems to go beyond dealing with the discomfort of winter weather. After some encouragement to express his concerns, we discovered that Alex was still upset about something we had forgotten. A few weeks ago, his soft drink that was sitting in the back seat cup holder tipped over and spilled on the seat. Knowing this was an accident, we didn’t react much, simply cleaning up the mess and assuring him that he didn’t do anything wrong. However, he still felt guilty, even though we held him blameless. Once we discovered that he was still feeling bad about what he thought was his fault, we once again reassured him that we weren’t angry or upset and that he didn’t need to feel bad about what had happened, hoping to rid him of anxiety about riding in the car.

Nonetheless, he seems to have current concerns about things falling. Last week, when his music therapist placed his music book on the keyboard, Alex was certain that the book was going to fall on the floor. Because he couldn’t quite find the words to express his fears, he let out a growl to let his therapist know he was upset. As his therapist and I tried to figure out why Alex wasn’t happy, he finally told us that he thought the book would fall, and that worried him. As his therapist demonstrated that the book was secure on the keyboard, I explained that even if the book fell, no harm would be done. The book falling wouldn’t make a mess, and his therapist would simply pick it up and put it back. After being reassured, Alex was able to continue successfully with the music therapy session. Knowing this incident was likely related to the spilled drink in the car incident, I decided not to mention the fears of the notebook falling again for fear of stirring up the memories of the spilled drink.

When Ed came home from work later that day, he asked me how Alex had done with music therapy, and I told him everything was fine, not wanting to make a deal of Alex’s brief moment of upset that never escalated, especially if Alex were eavesdropping, which he often does. However, when Ed later asked Alex about music therapy, he admitted to Ed that he had gotten upset. When Ed asked him what he had done, looking for details about the triggers of the upset and his reactions, Alex instead calmly replied, “Got over it.” Although Alex apparently needed to confess what had happened, he also seemed proud that he had dealt with the situation well.

Several years ago when we were having behavioral issues with Alex, he would ask me every night after bedtime prayers if had had done “anything bad” that day. While I was proud that he seemed to have developed a strong conscience and a sense of right and wrong, I never wanted him to have feelings of guilt afterward. Because his behavior has significantly improved over the years, he rarely asks me for a nightly accounting of his sins anymore. Most of the time if he does ask me if he did anything bad that day, I will tell him no, which is my honest assessment of his behavior. However, he sometimes reminds me that he got upset that day, and I must reassure him that everyone gets upset and compliment him that he handled the upset well, getting over it and apologizing. Somehow our discussions always seem to make him feel better, as he smiles and drifts off to a peaceful sleep.

Alex’s apparent need for absolution has made me think about how we as parents teach forgiveness and, by extension, explain God’s mercy. When I was growing up, I remember my mom teaching me that when I did something wrong, I simply needed to apologize, ask God to forgive me, and try to do better. Because she was always loving and forgiving, I learned that God was always loving and forgiving. If we want our children to understand God’s mercy, we must be merciful parents. We always want Alex to know that no matter what he does, we will love and forgive him, and more importantly, God will love and forgive him.

When Alex makes mistakes, we expect him to apologize, but we don’t want him to continue to obsess about what he has done wrong. Instead, we want him to know that we have forgiven him and hold nothing against him. Being raised in Protestant churches, that method of forgiveness has usually satisfied me. On the other hand, Ed, who was raised Catholic, grew up with the ritual of confessing sins. (I once asked him what he usually confessed to the priests, and he told me “eating meat on Friday” and “using the Lord’s name in vain,” both of which I have witnessed. If that’s all he did wrong as a kid, his parents can feel proud.)

Perhaps Alex needs that act of confession, as evidenced in his bedtime queries of what he did wrong or in his telling his dad the events I held in confidence, as a way of unburdening his conscience. Maybe admitting what he has done wrong decreases his anxiety since he seems to feel relief in listing his sins aloud. While we try to minimize his faults to show mercy and forgiveness, Alex wants to confess them and be reassured that even when reminded of his faults, we still love him unconditionally.

Through his confessions, Alex may gain what he really needs: absolution. When all we ask of him is an apology and an effort to do better next time––instead of punishing him––he knows that we love him and forgive him. If we as imperfect human parents can do that, certainly his heavenly Father will do the same. Consequently, he rests peacefully in the knowledge that he can obtain mercy whenever he needs it, and hopefully he is learning to extend mercy to others in the same way he has been shown compassion.

“But You, O Lord, are a God of compassion and mercy, slow to get angry and filled with unfailing love and faithfulness.” Psalm 86:15

Autism Rates Plateau?

 

On the second day of 2018, the news proclaimed that autism rates in the United States had reached a plateau. Of course, this report should be cause for great celebration, but before we get too excited, the details need some scrutiny first. On Tuesday, January 2, 2018, the Los Angeles Times published an article written by Karen Kaplan entitled “Autism spectrum disorders appear to have stabilized among U.S. kids and teens” based upon research published that same day in The Journal of the American Medical Association. [To read this article, please click here.] Other media outlets also reported this information that seems to indicate that the rate of autism is not currently increasing. However, a closer look at this research may lead to other conclusions.

The research conducted by the National Health Interview Survey (NHIS) includes polls of American households across the county about various health conditions. When families are polled, one child is chosen at random to be included in this survey. Parents are asked the following question: “Has a doctor or health professional ever told you that (the randomly selected child) has autism, Asperger’s disorder, pervasive developmental disorder, or autism spectrum disorder?”

In 2014, 2015, and 2016, 711 parents out of the 30,502 polled answered yes to that question; their children had some form of autism. That data was given to researchers at the University of Iowa, who considered the likelihood of a household being chosen that had a child with autism and how likely a parent would be to answer that question. Using their statistical methods, they determined the rate of autism for U.S. children and teens to be 2.41% in the years 2014-2016.

Although the rate of autism increased, according to this study, from 2.24% in 2014, 2.41% in 2015, and 2.58% in 2016, the researchers concluded that the increase was not statistically significant and could be due to chance. Hence, they decided that the rates have stabilized. (If the rates could be due to chance, what was the point of the University of Iowa researchers calculating based upon likelihoods?) Over those three years, the rate of autism for boys was higher at 3.54% than the rate for girls at 1.22%. Rates of autism around the United States varied somewhat with the South at 2.21%, the West at 2.24%, the Midwest at 2.47%, and the Northeast at 3.05%.

In comparing data with another research study, the NHIS reported higher numbers of autism than the Autism and Developmental Disabilities Monitoring Network (ADDM). However, the ADDM research only focuses on a few communities (about twelve), while the NHIS surveys the entire country. In addition, the methodology is different. The NHIS relies upon family members to report whether their children have autism, whereas the ADDM has doctors review medical and educational records of the children. Nonetheless, both research groups imply that autism rates have stabilized.

The University of Iowa researchers affiliated with the NHIS study indicate that more research needs to be done to ascertain what factors, such as environmental causes, diagnostic criteria, autism awareness, or others, may be the reason for this “apparent end to a decade-long increase” in the rates of autism in the United States.

Ironically, last month that same study by the NHIS was used to show that the U.S. autism rate in 2016 reached a record high: 1 in 36 children and 1 in 28 boys. This was an increase from the previous rate of 1 in 43 children with autism in 2015 and 1 in 45 children in 2014. Nonetheless, the U.S. Centers for Disease Control minimized the significance of this increase, stating, “there was not a statistically significant change in the prevalence of children ever diagnosed with autism spectrum disorder from 2014 to 2016.” Of course, the CDC also assures people that vaccines are perfectly safe for everyone and enthusiastically recommended flu shots that have proven to be essentially useless this year.

Some factors that may skew the data would be the willingness of parents to share that their children have autism for a survey; some parents would consider that information confidential. Also, the methodology of the survey that chooses a random child might miss another child in the family who has autism. In addition, this survey includes children ages 3-7, but some children do not receive a diagnosis of autism until they are in school, which may cause the data to reflect autism numbers less than the actual statistics. Moreover, the wording of the survey question regarding autism may be problematic. Specifically, the question asks if a doctor or health professional has diagnosed the child’s autism.

However, many children, including mine, were diagnosed with autism through the educational system. In fact, my son’s pediatrician disagreed with me when I told him I thought Alex had autism, telling me that Alex was "too smart" to be autistic. Had we not pursued further testing through the school system, a diagnosis would have been delayed. That was more than twenty years ago; I would truly hope more doctors would recognize signs of autism in toddlers and trust their parents’ intuition regarding developmental delays in their children.

While I have great hope that autism rates in the United States and around the world will eventually stabilize and even decrease, I do not believe that is happening now, despite what the media reports. The methodology behind this research, like most surveys, seems to have flaws that could lead researchers to inaccurate conclusions. While the subjects of this particular research may appear only as numbers and percentages, we must remember that these are real children with autism and their families who need help. To minimize the impact of the increase of autism in this country may lead to less support for their unique needs and to less research to find the cause and cure for this lifelong disability. Our children cannot be reduced to a statistic that may or may not be true. Until a cure for autism is found, we parents must speak up for our precious children whose voices have been hindered or silenced by autism. They certainly deserve no less.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1