Autism Awareness: The 2018 CDC Report

“We will fight, not out of spite, for someone must stand up for what’s right. ‘Cause where there’s a man who has no voice, there ours shall go singing.” ~ “Hands” by Jewel Kilcher and Patrick Leonard

A few days ago, as Autism Awareness Month nears the end, the U.S. Centers for Disease Control and Prevention (CDC) released a new report regarding how widespread autism is. [To read this report, please click here.] Based upon data collected by The Autism and Developmental Disabilities Monitoring Network (ADDM), the new rate of autism is the highest ever, with one in 59 children in the United States estimated to have autism.

According to the CDC report, the data collected by the ADDM focused upon children who were eight years old because most children with autism are diagnosed by age eight. However, the report is typically published four years after the survey year, which means those children in the current report are now twelve years old.

Perhaps more enlightening is to observe the increase of autism in the past decade as shown in the ADDM data. [To read this CDC report, please click here.] Specifically, the data on autism prevalence is as follows:

In the 2009 report on 2006 data, the rate of autism was 1 in 110 U.S. children.

In the 2012 report on 2008 data, the rate of autism was 1 in 88 U.S. children.

In the 2014 report on 2010 data, the rate of autism was 1 in 68 U.S. children.

In the recent 2018 report on 2014 data, the current autism rate is 1 in 59 U.S. children.

Despite these significant increases, the CDC doesn’t seem terribly concerned and only offers two suggestions––early diagnosis of autism and early intervention. However, the CDC report also notes that the median age for the earliest diagnosis of autism is 52 months. Apparently, this figure is relatively the same for both genders and all ethnicities. While 85% of children with autism have documented mentions of developmental concerns by age 36 months, only 42% had been thoroughly evaluated for autism by 36 months.

While early diagnosis and intervention is certainly a good idea, clearly this is not happening. Perhaps more doctors need to be trained in recognizing early signs of autism, and more resources need to be available so that children can benefit from early assessment and intervention. However, with the rapidly increasing numbers of children who have autism, the waiting lists for autism intervention services are also increasing.

In the Public Health Action section of the CDC report, the agency notes that because of the prevalence of autism, “…the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD.” Sadly, most of the government-funded research offers little hope toward finding a cure for autism. Consequently, even more government funds will be needed to treat, teach, house, and employ the increasing number of children and adults with autism. At what point will the CDC recognize that autism is a major health crisis in this country?

In response to the recent CDC report, Time magazine published an article online on April 26, 2018, entitled “This May Be Why Autism Diagnoses Are On the Rise, According to the CDC.” [To read this article, please click here.] Written by Jamie Ducharme, the article notes that, according to the CDC, the highest ever rates of autism are probably due to better diagnosis and reporting of autism, especially in the black and Hispanic communities. However, the CDC report actually indicates that age of diagnosis for all ethnicities is fairly similar. Nonetheless, this article perpetuates the myth that the actual rate of autism isn’t increasing; only better diagnosis and data could possibly have caused the increase. To further the improved diagnosis cause, the author quotes a chief medical officer at the CDC, Dr. Stuart Shapira: “It’s likely in part due to better identification, more screening and referral to services.” Even Dr. Shapira hedges the better diagnosis reasoning as the cause for autism increases with his “likely in part” qualification.

Offering only the suggestion of better diagnosis and data for the rising autism rates, the author also echoes the CDC stance on the importance of early diagnosis and intervention. The article quotes CDC expert on developmental disabilities Dr. Daisy Christensen: “The soonest a child can be identified and connected to services, the better chance they have at reaching their full potential.” Again, because so many children have autism now, many must wait to be evaluated, and even after they receive autism diagnoses, they must wait longer to receive funding and services they desperately need. In an ideal world, children would receive autism diagnoses as soon as possible and then immediately begin receiving therapies to develop their skills. In a truly ideal world, no child would have autism.

Ironically, the CDC motto is “Saving Lives, Protecting People,” yet the CDC has failed to make significant progress in determining the true cause of autism. As a result, many children with autism have drowned in deep water and been hit by cars as they wandered from places of safety. Others have struggled with serious medical conditions, such as seizures and severe gastrointestinal disorders. Still others deal with anxiety, bipolar disorder, and OCD. These people with autism, nearly half of whom cannot speak, must be protected.

As we near the end of another Autism Awareness Month, the CDC appears to be no closer to solving the puzzle of autism. We need to stop counting eight-year-old children with autism and figure out how to help them and all the other people with autism. Furthermore, the CDC must allocate funds more judiciously to find the cause of autism in order to find a cure. In less than ten years, the rate of children with autism has nearly doubled. Those eight-year-old children with autism grow up to be adults with autism. Ignoring or even minimizing this public health crisis will not come to a good end. As the parent support group Talk About Curing Autism wisely proclaimed in response to the CDC report last week: “It’s time to care.”

“The Lord hears His people when they call to Him for help. He rescues them from all their troubles.” Psalm 34:17

Person-Centered Planning

On Friday, we had our regular quarterly meeting with Alex’s support team. Like IEP and case conference meetings held for students, the quarterly meetings allow us as parents to discuss Alex’s progress, gain input from the professionals who work with him, and make plans to keep him moving forward. Since Alex is doing well, especially considering that he has been able to have doses of three medications reduced successfully and one discontinued completely in the past year, we anticipated that the meeting would go smoothly. In addition, we are blessed to have fantastic support professionals who not only know how to bring out the best in Alex, but also celebrate with us the achievements he is making along the way.

The State of Indiana has recently begun person-centered planning with clients who have disabilities, so we knew this would be a primary focus of our meeting. Using a model called Life Course Tools (which is available online at lifecoursetools.com), the state has begun developing portfolios for “Charting the Life Course,” which is a lengthy process. Case managers are expected to discuss with individuals and their families eight life domains: daily life employment, community living, social and spirituality, healthy living, safety and security, citizenship and advocacy, supports for family, as well as supports and services. By asking various questions, the goal is to develop a plan for the future, a “life vision,” that allows a “full, inclusive, quality life in the community.”

Having read the materials online prior to our meeting, I was uncertain how Alex might answer these questions, especially since some of them seem rather abstract. However, he did amazingly well at providing the information needed to begin developing his plan for the future. With the reduction of medications, we have noted that Alex has been able to answer questions with less reliance on us to speak for him. He’s more alert and more decisive; moreover, his eye contact, volume, and speech have improved greatly. As he answered various questions, he looked at the person speaking to him, spoke up, and used complete sentences to convey clearly his ideas. His calm manner reflected his improved social skills, and his ability to express himself without asking us, “What would be good?” showed increased independence.

Noting his improved social skills, we explained that Alex is learning to use manners without constantly being reminded. When we asked him why that was important, he said that he didn’t want to be “rude” and then commented that not using manners is “disrespectful.” He displayed politeness by not interrupting others and by answering any questions asked of him, showing that he was paying attention and wanting to engage with other people. Moreover, he never complained that the meeting was taking too long, as he has at times in past meetings.

To gain insights into Alex’s priorities, his case manager asked him what kinds of things he enjoys. He listed "game shows, Walmart, Nanny’s house, and V.U." When asked for more specific details, he said that he likes The Price Is Right and Wheel of Fortune, shopping at Walmart because it’s a big store, going to his grandparents’ house because it’s “special,” and going to basketball games at Valparaiso University. His response came as no surprise to us, knowing what’s important to him. When asked what he likes to do, he said hiking at Coffee Creek (a nature preserve near our home) and going to concerts in the park. When he was asked what he’s good at, he immediately said math, and when asked about his ideal job, he said meteorologist. Some things never change; he has loved math since he was little and has told us for more than twenty years that he’d like to be a meteorologist someday. His love of numbers and weather has never waned over the years, and he clearly knows what he finds interesting. When we were asked what types of jobs we thought Alex might do someday, I mentioned that his computer skills, especially his excellent keyboarding skills, along with his attention to accuracy and details, might be used well in a job involving computer coding. His case manager seemed to think that could be a good match of his interests and abilities.

When discussing future living arrangements, his case manager asked Ed and me where we thought Alex would live “for the rest of his life”—at home with us, in a group home, or in supported living with a roommate and a caretaker in an apartment. A few years ago, we were told that Alex would likely live with us until we’re in our eighties because funding and housing for adults with disabilities is limited primarily to those with greater needs. We decided that we would make the best family life possible knowing that Alex will live with us for many years, and we are fortunate that he is quite pleasant 99.9% of the time. However, the “for the rest of his life” part of the question seems tricky.

While Ed and I confidently said, “I do” in our marriage vows with the stipulation “for as long as we both shall live” without hesitation, thinking about the rest of Alex’s life is different. For one, he is likely to outlive both of us, and we worry about who will care for him once we’re gone. In addition, autism has taught us to live one day at a time, one step at a time, one milestone at a time. Looking down the road too far can be overwhelming, thinking of all the skills to master and things to do, so we focus on accomplishing one thing at a time. Planning for the future is not the same with a child who has autism.

Moreover, I wondered how our response to the living arrangements inquiry reflects upon us as parents. If we want him to live at home with us, does that make us overly protective parents or simply caring ones? If we want him to be in a supported living arrangement with a caretaker, does that make us selfish parents or simply ones who want him to be independent? As the emotional mother, I responded that we thought Alex would probably live at home with us for a long time, and we are happy to have him here. As the rational father, Ed wisely added that we want Alex to be as independent as he can be and hoped that someday he might be able to live on his own. Knowing that is ultimately what’s best for Alex, especially since we may not always be able to care for him, I agreed with Ed.

Ironically, I thought the difficult part of person-centered planning would be getting answers out of Alex, but he had less trouble responding to the questions than I did. He has developed a clear sense of his likes and dislikes and strengths and weaknesses and has learned to express what he wants and needs. However, I over think things too much and should take a cue from Alex about just answering candidly. I’m sure this process of developing his Life Course plan will make me ponder many aspects of Alex’s life, and I hope I gain more insights along the way.

Apparently, his case manager was quite pleased with how well the meeting had gone, as she told us more than once how “easy” we had made things for her and remarked that we had given her quite a bit of good information to include in Alex’s portfolio. Moreover, she commented that she rarely sees “success stories” in her field, but that Alex has, indeed, been a success story with the progress he has made. Interestingly enough, Alex’s behavioral therapist used that same phrase recently, when she told me that she will be presenting Alex’s “success story” at her company’s annual meeting next month. To think that six years ago, we were overwhelmed as to how to help Alex overcome his extreme anxiety and aggression, and that now his team views him as a rare success story is truly a blessing. As we continue to look forward to Alex’s future, whether it be in the coming days, weeks, months, or even years, we thank God for the wonderful people He has sent to help Alex and for the prayers He has answered and will continue to answer to help Alex succeed.

“May He grant your heart’s desires and make all your plans succeed. May we shout for joy when we hear of your victory and raise a victory banner in the name of our God. May the Lord answer all your prayers.” Psalm 20:4-5

What Science Says About Autism

Last week I found two links to websites I thought would offer insights into possible causes and treatments for autism. Unfortunately, I was disappointed. However, the information from these links is worth sharing because both sites reveal bias and attitudes some scientists and doctors hold regarding autism research. Moreover, they demonstrate the limitations in providing care for patients with autism offered by those who ascribe to these viewpoints.

In the first article, “Autism Awareness Month: All The Things That Don’t Cause Autism,” microbiologist Dr. Alex Berezow condescendingly eliminates various potential causes of autism except genetics. This article, which was published April 5, 2018, on the website for the American Council on Science and Health, of which Dr. Berezow is Senior Fellow of Biomedical Science, uses inflammatory language to prove his point. Specifically he refers to one theory as being believed by “at least one lunatic” and notes that some parents “stink” at parenting skills. [To read this article, please click here.]

Especially incensed by the theory that vaccines cause autism, he attacks Dr. Andrew Wakefield’s “study” [Dr. Berzow’s use of quotation marks, not mine] as a “sham” and calls Dr. Wakefield a “fraud.” So certain is Dr. Berezow that no link exists between vaccines and autism, he asserts, “A substantial proportion of people refuse to accept the reality that vaccines do not cause autism.” Perhaps so many people disagree because his declaration may not be “reality.”

While Dr. Berezow goes on to name various environmental factors, such as immune factors, pollution, and pesticides, he believes that their effect upon autism is marginal. Moreover, he states that pesticides are “used at safe levels in the U.S.” and that the “U.S has some of the cleanest air in the world.” Perhaps he sees toxins as less of a threat to health than many autism parents do. Apparently, Dr. Berezow has autism all figured out–-it’s “50% to 95% genetic.” That strikes me as a wide range, and I’m curious as to what the other 50% to 5% may be. Finally, he warns those who fail to heed his infallible expertise regarding genetics as the only cause of autism: “Be skeptical of claims to the contrary.”

The second website also proved to be less than helpful. The Association for Science in Autism Treatment’s (ASAT) website purports to offer medical professionals “an array of resources that will keep you apprised of the state of the science with respect to the hundreds of treatments for autism, many of which are biomedical in nature.” [For a link to this website, please click here.] Despite their motto, “Real Science, Real Hope,” there doesn’t seem to be much hope offered on this website.

In the summaries of biomedical autism treatment, only one method is listed under “What works or needs more research”: selected medications, specifically psychotropic medications, such as Risperdal, Ritalin, Prozac, and Abilify. Recommending these drugs for severe aggression, hyperactivity, and other disruptive behaviors, this website notes that these medications are effective interventions for some people with autism. Certainly, medications can be helpful with difficult behaviors found in autism, but these medications can also have negative side effects, and offering only medications as biomedical treatment gives few options to doctors and their patients.

In contrast, twelve biomedical treatments are listed as “What doesn’t work or is untested”: anti-fungal and anti-yeast medication, chelation therapy, craniosacral therapy, herbs and homeopathic treatments, hyperbaric oxygen therapy, iridology, magnets, marijuana, neurofeedback therapy, secretin, special diets, as well as vitamin and supplement therapy. These methods are likely listed because anecdotal evidence shows that parents have found these methods helpful to their children with autism. However, this website destroys the credibility of each of these treatments one by one, explaining how they are of little or no use.

For example, anti-fungal medications to treat yeast infections in the digestive system have been critical to Alex’s health and well being when he has had Candida overgrowth, evidenced by thrush infection in his mouth. When he has yeast infections, he is irritable and agitated, probably because he doesn’t feel well. Nonetheless, ASAT discounts ant-fungal medication as “untested as a treatment for autism spectrum disorders” and suggests that medical professionals warn families about potential side effects of the medication.

Additionally, we pursued chelation therapy with Alex because he had high levels of the toxins arsenic, lead, and mercury in his system. However, ASAT states: “It is doubtful that individuals with autism spectrum disorder have high levels of heavy metals or that chelating agents would be effective in reversing neurological damage from metal exposure.” Furthermore, ASAT describes chelation therapy as “implausible and unacceptably risky” because it “may cause severe side effects and even death.” They conclude that chelation therapy is an “inappropriate treatment for autism spectrum disorders.” However, allowing toxic metals to remain in the body of a child with autism can also cause severe side effects and even death. To discount the possibility that toxic levels of heavy metals exist in children with autism is to ignore a serious health issue. Doctors need at least to test for heavy metal toxicity before discounting chelation therapy.

Another treatment method ASAT discourages is special diets, such as the gluten-free and casein-free diet, based upon two studies that “found no evidence of benefit from the gluten-free, casein-free diet.” Furthermore, ASAT states, “There is a risk that removing gluten and casein from an individual’s diet will lead to inadequate nutrition…” Consequently, ASAT recommends, “Professionals should present diets as untested as a treatment for autism spectrum disorders…”This stance fails to recognize that many children with autism have allergies or sensitivities to glutens found in grains and caseins found in milk products and benefit from removing these foods from their diets. Certainly, people with autism should be tested for gluten and casein intolerance before dismissing special diets as treatment for autism. Moreover, the study I cited in last week’s blog entry indicates that special diets prove quite beneficial for people with autism; apparently, ASAT has not yet read that extensive research report.

Similarly, that same research report cites the value of vitamin and mineral supplements, yet ASAT does not recommend nutritional supplements to treat autism. Specifically, they describe vitamin B6, magnesium, and omega 3 fatty acids as “ineffective in changing behavior.” Additionally, they note that vitamin B12 and carnitine show “little evidence of positive effects on behavior.” Perhaps they need to do more extensive research before discounting the value of nutritional supplements instead of relying on only a few studies. In addition, people with autism should be tested for nutritional deficiencies before determining they will not benefit from vitamin, mineral, essential fatty acid, and amino acid supplements.

Essentially, ASAT offers only one biomedical treatment––psychotropic medications––while dismissing several other treatments that may, indeed, be helpful to patients with autism. By encouraging medical professionals not to recommend these treatments to their patients with autism, families may miss out on methods that would help their children with autism. Until a definitive cause of autism can be established (and unlike Dr. Berezow, not everyone is convinced genetics is the only cause), patients with autism should have a variety of treatments available to address their various medical and nutritional needs. The availability of simple tests to assess medical conditions commonly found in autism, such as yeast overgrowth, heavy metal toxicity, food allergies, and vitamin deficiencies, makes diagnosing these issues easy. However, doctors must be willing to look for medical causes of behaviors found in autism and be willing to treat them with those methods ASAT discounts as “untested” or “unsupported by research.”

When people with autism have proper medical treatment and can regain their health, they are likely to feel better, behave better, and learn better. Despite the scientific training of those like Dr. Berezow and the medical professionals behind ASAT, they fail to see that medicine is an art as well as a science. Patients with autism must be treated as individuals whose needs should be evaluated and addressed. Ignoring medical problems not only hinders their progress, but it also impairs their quality of life. Consequently, parents must advocate for their children’s health with their children’s doctors to make certain they receive necessary treatments, seeking the healing they so desperately need, and remembering that God’s healing power is not limited by research studies.

“Stretch out your hand with healing power; may miraculous signs and wonders be done through the name of your holy servant Jesus.” Acts 4:30

Autism by Numbers

Today, the first of April, begins another Autism Awareness Month. Despite rising numbers of children being diagnosed with autism and increasing costs of caring for people with autism, little progress is being made to find a cure. Although Alex is more skilled with data and numbers than I am, I have found eye-opening statistics that provide true autism awareness.

According to the U.S. Centers for Disease Control and Prevention website on Autism Spectrum Disorder (ASD) Data & Statistics:

Approximately 1 in 68 children, or 1.5%, in the United States had autism, based on 2012 data.

ASD was 4.5 times more common in boys (1 in 42) than in girls (1 in 189), according to 2012 data.

[According to the 2016 National Health Center for Health Statistics: 1 in 36 children, or 2.24%, had autism, including 1 in 28 boys with autism.]

Autism occurs in all races, ethnicities, and socioeconomic groups, according to 2010 data.

The average prevalence of autism in Asia, Europe, and North America was 1-2% of the population, based upon data collected between 1966 and 2016.

The total cost per year for children with autism in the United States in 2011 was estimated to be $11.5-60.9 billion. These costs include medical care, special education, and lost parental productivity, that is, parents who must quit their jobs or work fewer hours in order to care for their children with autism.

The average annual Medicaid costs in 2005 for children with autism were $10,709 per child, which were six times higher than the average annual Medicaid costs for children without autism at $1812.

The average annual medical expenses in 2007 for privately insured children with autism were $4,110-6,200 higher than annual costs for children without ASD.

Intensive behavioral interventions for children with autism cost $40,000-60,000 per child per year in 2011.

According to the research article, “Costs of Autism Spectrum Disorders in the United Kingdom and the United States,” published in the Journal of the American Medical Association Pediatrics on August 2014 by Buescher et al:

The cost of supporting a person in the United States with autism and intellectual disability during his or her lifetime is $2.4 million. If a person has autism but does not have an intellectual disability, the cost is $1.4 million over a lifetime.

The largest costs for children with autism include special education and parental productivity loss. However, the largest costs for adults with autism include residential care/supported living accommodations and individual productivity loss since many people with autism cannot find employment. In addition, medical costs are much higher for adults with autism than for children with autism.

The cost of supporting children with autism in the United States is $61-66 billion per year; the cost of supporting adults with autism in the U.S. is $175-196 billion per year.

In the United States, the cost breakdown for people with autism includes 79% for services, 12% for the productivity costs for the individuals with autism, and 9% for the caregiver time costs.

According to the article, “Economic Burden of Childhood Autism Spectrum Disorders,” published in Pediatrics on February 2014 by Lavelle et al:

Educating a child with autism costs approximately $8610 more than a typical child each year.

According to Talk About Curing Autism’s website:

Of the National Institutes of Health’s 2011 $30.5 billion budget, only 0.6% was allocated to funding autism research. Despite the increasing prevalence of autism spectrum disorders, autism receives significantly less funding than other childhood conditions, such as muscular dystrophy, juvenile diabetes, leukemia, and pediatric AIDS.

Although today may be April Fool’s Day, this is no joke. We must stop this autism epidemic and find ways to help the children and adults dealing with the obstacles this condition places upon their lives every single day. Perhaps those who are unmoved by the day-to-day struggles people with autism and their families face may realize that staggering economic costs will overwhelm federal and state budgets unless a cure is found. Our country cannot afford the financial and personal costs autism places upon this nation.

Whenever I feel frustrated, wondering how such an insurmountable problem can be solved, I remember that God is not overwhelmed by the number of people with autism or the costs of caring for them or the lack of funds being spent to find a cure for autism. A plaque on my desk reminds me of God’s ability to solve any problem: “Today God is able to do more than I can ask or imagine.”

Alex never doubts that God will take care of him because he believes in the Resurrection that we as Christians celebrate today on Easter. Yesterday, when Ed asked him to name the best thing about Easter, without hesitation, Alex replied, “It’s when Jesus came back to life.” That same God who resurrected Christ can bring healing and hope to those with autism and their families, for through the struggles, our children bring glory to God.

“As Jesus was walking along, he saw a man who had been blind from birth. ‘Rabbi,' his disciples asked him, ‘why was this man born blind? Was it because of his own sins or his parents’ sins?’

‘It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” John 9:1-3