Treating Health and Well-Being in Autism

Although autism is primarily considered a developmental condition that hinders communication and social skills and causes repetitive behaviors, recent research confirms what many parents have known all along: autism also involves psychiatric and medical issues. In the article, “Psychiatric and Medical Conditions in Transition-Aged Individuals with ASD,” published April 2018 in the journal Pediatrics, researchers note that adolescents and young adults with autism deal with more psychiatric and medical conditions than typical young people. [To read this article, please click here.]

For this study, researchers used 2013-2015 data from Kaiser Permanente Northern California, which provides care to people in the San Francisco and Sacramento regions. Information regarding health care for teenagers and young adults ages 14-25 was studied with a typical control group of 20,516 individuals and 4,123 with autism spectrum disorders.

Compared to the typical individuals, psychiatric conditions were significantly more common in those with autism. In fact, 34% of those with autism also had at least one psychiatric condition. To illustrate, 15% had ADHD, 14% had anxiety, 10% had depression, and 6% had bipolar disorder.

In addition to psychiatric conditions prevalent in young people with autism, the researchers found that teenagers and young adults who have autism also dealt with various medical conditions. Specifically, 42% had infections, 25% dealt with obesity, 18% had neurological issues, 16% had allergy and/or immunology concerns, 15% had musculoskeletal conditions, and 11% had gastrointestinal problems. As the article notes, “Compared with the TC [typical control] group, individuals with ASD were at significantly increased risk for most medical conditions.”

One theory for the high rate of obesity in the autism group was the use of antipsychotic medications; one common side effect of these drugs is obesity. While 19% of the patients with autism took antipsychotic medications, even those who did not take these drugs had a higher incidence of obesity than those in the typical group. Perhaps poor dietary habits due to sensory issues, a lack of exercise, and/or metabolic problems contributed to this rate of obesity. Interestingly, those with autism were much less likely to smoke or abuse drugs than those in the typical group. The researchers suggested that uses of tobacco and drugs tend to be social activities, which people with autism may avoid.

The researchers speculated various reasons why teenagers and young adults with autism also have psychiatric and medical conditions. First, isolation from others due to impaired social skills may cause anxiety and/or depression. Also, the medications used to treat psychiatric conditions could cause or intensify medical conditions, such as obesity and gastrointestinal problems. In addition, sensory issues and difficulty interacting with others may hinder access to medical care. Moreover, medical providers may not know how to meet the needs of those with autism, causing treatment to be less successful.

While the researchers did not definitively identify why teenagers and young adults have significantly more psychiatric and medical issues, they noted that more research needs to be done in this area. They conclude, “…there is a pressing need for all clinicians to approach ASD as a chronic health condition requiring regular follow-up and routine screening and treatment of medical and psychiatric issues.”

While mainstream medicine may not know why so many children, adolescents, and young adults with autism also have psychiatric and medical conditions, practitioners of functional medicine who treat patients with autism have some good ideas as to why they have additional issues. On May 31, 2018, in a weekly live chat on the Spectum Awakening Facebook page, Dr. Jared Skowron discussed “the seven medical arenas of autism” and offered helpful suggestions for testing and treating these issues.

The first medical issue often seen in autism is autoimmunity, such as food sensitivities or PANDAS/PANS syndrome caused by strep infections. These conditions may benefit from anti-inflammatory supplements, such as fish oil. Another medical concern found in autism involves brain chemistry issues, including problems with regulating serotonin, dopamine, and/or adrenaline. Supplements such as amino acids and B vitamins may prove helpful to regulate brain chemistry.

A third medical issue common in autism involves detoxification issues, which can lead to heavy metal toxicity. Recent studies indicate that many teenagers with autism have abnormal levels of aluminum in their brains. Chelation with silica or sulfur compounds may be needed to remove these toxins from the body. Another cause of medical conditions in autism is genetic mutations; the availability of home test kits, such as 23 and Me, allows simple ways to diagnose potential genetic issues that may need to be addressed.

Perhaps one of the most common medical problems in autism is the issue of gastrointestinal dysfunction. These problems of the digestive tract can often be treated by diets that eliminate allergens and/or medications and supplements that treat yeast overgrowth, harmful bacteria, and parasites. In addition to problems with the digestive system, some people with autism have issues with the endocrine system. Specifically, adrenal and thyroid supplements may be needed to adjust hormone imbalances that impact stress levels and the immune system. Finally, mitochondrial dysfunction may accompany autism, causing severe fatigue. Various supplements, such as CoQ10, can improve cellular function issues that occur with mitochondrial disease.

Although autism primarily affects communication, social interaction, and behavior, the study of Northern California teenagers and young adults demonstrates that many young people with autism must also contend with psychiatric and medical issues. Diagnosing and treating these additional conditions may be difficult for medical personnel, due to the obstacles autism typically presents, but improving the mental and physical health of these young people is crucial to their well-being. Certainly, people with autism deserve to be as happy and healthy as possible, and those practitioners willing to seek causes and cures for accompanying ailments deserve praise for their dedication to healing.

“Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard.” Isaiah 58:8

Flu Shots: Some Facts to Consider

 

Flu season hasn’t even officially started yet, and already I’m tired of seeing and hearing all the ads urging people to get flu shots. Last week while I was on the phone refilling Ed’s blood pressure medicine, my thyroid medicine, and Alex’s anxiety meds, I had to listen to the pharmacies’ pleas to get our flu shots right away, especially since they are “free.” In fact, I’ve seen some places offering gift cards as an enticement to customers to get flu shots at their stores. In addition, my friendly and well-meaning pharmacist eagerly offered to give me a flu shot when I was picking up refills. I declined then, as I also did during my regular thyroid check when my doctor offered one. I don’t do flu shots anymore.

When I was younger, I received annual flu shots, fearing that my job as a middle school teacher put me more at risk for exposure to the flu. Some students feel the need to stand very close to me as they share their fears of illness along with their germs before I send them to the school nurse. Unlike other jobs where a person just calls in sick, teachers must construct elaborate lesson plans for substitute teachers, even when we are half-dead with illness. In addition, taking care of Alex requires that I always be at my best. Consequently, I can’t get sick. I used to think that flu shots were a good way to avoid illness. However, after Alex was diagnosed with autism and I was diagnosed with two autoimmune disorders, I began researching ways to make both of us healthier. My research led me to conclude that flu shots were not the answer for us.

Before getting a flu shot this year, I would suggest researching and considering the following factors.

Limited Effectiveness: This year, the Centers for Disease Control has decided that the nasal version of the flu vaccine should not be given because it is ineffective. This vaccine that contains a live weakened form of the virus is usually preferred for children who do not like getting shots. However this year, it was found to have an effectiveness rate of only three percent. While the shot version of the flu vaccine performs better, the CDC admits that various factors hinder making the shot effective, such as predicting which strains of flu will be present in the coming season. Consequently, they predict that flu shots will be effective in only fifty to sixty percent of the people who have them. Those are not impressive odds.

Side Effects: Before getting a flu shot, patients should consider the potential risks. The package insert for the flu vaccine lists serious adverse effects that have occurred after flu shots. These conditions include the blood disorder thrombocytopenia (a blood platelet disorder that can cause serious bleeding), immune system reactions such as anaphylactic shock, nervous system disorders including convulsions and Guillain-Barre Syndrome, vascular disorders that can involve the kidneys, along with skin and other disorders, such as cellulitis and “influenza-like illness.” In trying to prevent the flu, a patient at worst can become sicker from the vaccine or even die, or at least have the same symptoms of flu. Patients should also be aware that “no interaction studies have been performed on interaction between influenza vaccines in general and other vaccines or medications.” In other words, no one has bothered to test whether mixing flu vaccines with other vaccines or medications is dangerous or not.

Ingredients: The package insert for the flu vaccine gives pause for thought, too, in listing the ingredients found in flu vaccines. The least concerning component is sucrose (sugar), and ovalbumin, or albumin from egg whites seems harmless, except for those with egg allergies. Hence, those with egg allergies are usually warned not to get flu shots. In addition, people with allergies to antibiotics should also be concerned because the shot contain the antibiotics neomycin sulfate, and polymyxin B. These shots also contain beta-propiolactone, which is considered a carcinogen, a potential cancer-causing agent. These ingredients occur in “residual amounts.” One should investigate the main ingredients, as well.

The vaccine insert lists ingredients that can be found and researched on Drugs.com. Sodium chloride is used to supplement the body with fluids and can cause rapid heartbeat and shortness of breath. Monobasic and dibasic sodium phosphate are both laxatives that can cause nausea and vomiting and should not be taken by people with kidney disease or who have had gastric bypass surgery. Potassium chloride is a mineral used to treat potassium deficiency and has similar side effects to sodium phosphate. Patients with kidney disease and the autoimmune disorder Addison’s disease are warned not to use potassium chloride. Another mineral, calcium chloride, can cause nervous system and cardiovascular side effects. Monobasic potassium phosphate, which controls the amount of calcium in the body, can cause dizziness and vomiting and should not be taken by people with kidney disease. Sodium taurodeoxycholate is listed as a bile acid and an irritant. Injecting any of these compounds could be problematic, aggravating previous health issues and potentially causing new ones. In addition, most flu shots contain thimerosal, which contains mercury, a heavy metal toxin harmful to the nervous system. In fact, we had to use chelation therapy with Alex because he suffered from mercury poisoning, probably caused by his childhood vaccines in the 1990's. Thimerosal was removed from childhood vaccines in 2001, yet flu shots continue to use this compound as a preservative.

What led me to research flu shots in greater detail was a letter Alex recently received from our pharmacy encouraging him to get a flu shot. The letter also contained a vaccine screening form with several questions that made me question how safe the flu vaccine really is. In addition to questions about various allergies and immune system issues, Question #10 asks: “Have you ever had a seizure disorder for which you are on seizure medication, a brain disorder, Guillain-Barre Syndrome or other nervous system problems?” Thanks to autism, the answer to that question is a big resounding “YES.”

After the questionnaire, the form provides fine print legalese in which the patient agrees to understanding all the potential risks of the vaccine and releases the pharmacy from any legal responsibility for any damage the shot may cause. The final line should give a person pause for thought: “I understand and agree that I will not be able to sue [the person who administered the shot and the pharmacy] for any injury or property damage I may suffer as a result of the immunization.” Essentially, you take a risk, and they incur no responsibility.

Consequently, Alex and I will not be getting flu shots this year or likely ever. His neurological issues associated with autism and my autoimmune issues put us at risk for complications. Besides, I don’t like the idea of being injected with questionable compounds, and the limited effectiveness of the vaccines makes it not worth the gamble, even if it is free. Another pharmacy we use offered helpful suggestions for staying healthy during flu season: wash your hands; avoid touching your eyes, nose or mouth, especially in public; get plenty of sleep; be active; drink plenty of water; and manage stress. While they also suggested getting a flu shot, Alex and I will skip that tip, follow their other guidelines, and take vitamin D-3 as recommended by our doctors. In addition, we will follow the 3 P’s for good health my retired internist once shared with me: proper nutrition, plenty of rest, and prayer. Armed with those, we trust God will keep us safe and healthy.

“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalms 25:5

Autism and Health: A Challenge

 

This month, a comprehensive analysis was published highlighting the problems parents have finding help for their children with autism. Jane Willis and Yara Evans from Queen Mary University of London released the findings of their surveys from two years ago in a thirty-page report entitled “Health and service provision for people with Autism Spectrum Disorder: A survey of parents in the United Kingdom, 2014.”  To read this full report, please click here.] At the time they surveyed 264 parents and caregivers about their experiences of caring for children with autism, more than 600,000 people with autism were living in the United Kingdom. As I read the report, I noted that parents in the United Kingdom face the same issues that autism parents encounter in the United States.

Under the topic “Challenges faced and severity of issues,” more than 80% of the parents listed five specific challenges out of a list of 22, and the majority described all of these issues as “very significant.” These concerns included the following:

1.  anxiety/fearfulness/avoidance behaviors

2.  irritability (low mood, oppositional behaviors, tantrums, lack of flexibility)

3.  sensory sensitivity (light/sound/touch/abnormal pain sensitivity)

4.  agitation/stimming behaviors

5.  sudden negative changes in behavior

Although behaviors appear to be the primary challenges parents face, the survey indicates that 87% of parents sought treatment from health care professionals for various issues and often found little or no help. The surveys revealed that parents consulted doctors for help with dietary and nutritional issues, gut issues, behavioral issues, sleep problems, toileting issues, seizures, and other issues without getting satisfactory assistance. Parents noted that many doctors lack knowledge about autism, and some did not take their concerns seriously, dismissing them as “just autism.”

With little support from medical professionals, parents of children with autism often seek other interventions, trying to help their children. This survey found that ninety percent of the parents had used dietary interventions or modifications for their children with autism. The top two diets used were the gluten-free diet (94% of those who used dietary modification) and the casein-free diet (90% of the parents who implemented dietary changes). Some parents use a combination of dietary modifications; we have used the gluten-free and casein-free diet with Alex for seventeen years. Of those parents who used dietary interventions, 92% reported some level of improvement (life-changing, significant, or slight) in their children with autism. Some of the benefits of dietary intervention that parents noted were improved communication skills, better eye contact and sociability, calmer and more compliant behaviors, improved sleep, greater focus, and fewer allergy and digestive issues.

In addition to dietary changes, 90% of the parents in this survey indicated that they had used nutritional supplements with their children. The four types of supplements most used included fish oils/essential fatty acids, vitamins, digestive and gut support, and minerals. Of the parents who used nutritional supports, 87% noted improvement at some level. These benefits are similar to those of the dietary interventions, such as better behavior, including being calmer and more focused, improved eye contact, and fewer digestive issues. Interestingly, parents who used nutritional supplements reported using more than one; in fact, nearly half used 6-10 supplements. Several of them also mentioned using dietary intervention along with nutritional supplements and felt that both had helped their children.

Besides dietary and nutritional interventions, parents also relied upon traditional medicine with 62% of parents reporting their children had been given prescription medications. The top three types of prescriptions listed are antibiotics, anti-fungals, and anti-virals. Considering that children with autism often have immune system issues, these medications would be necessary to help them deal with various types of infections. Parents generally found these prescriptions to be helpful, as 72% reported some level of improvement in their children after taking the medicine.

Despite the success of these medications, many parents of children with autism also seek alternative therapies to help their children: 72% of those surveyed indicated that they had tried alternative methods, and 87% of those parents reported some level of improvement. From a list of 33 different alternative therapies (several of which we have tried with Alex at one time or another), the top alternative therapies used included the following: homeopathy, ABA (Applied Behavior Analysis), HBOT (hyperbaric oxygen therapy), and CST (Cranial-Sacral Therapy). Those parents who used alternative therapies cited benefits, such as improvement in sensory issues and reduced anxiety.

Finally, the survey asked parents what changes they would like to see to assist them in helping their children with autism. Their top five recommendations for changes needed include the following:

1.  Improved relationships between parents and professionals

2.  An end to discrimination (treating children with autism differently than typical children and recognizing their medical needs) in service provision

3.  A better understanding of autism

4.  Better education and training for professional staff

5. More thorough investigations of the problems involved (such as recognizing that behaviors may have a medical cause)

After reading this comprehensive and insightful report, I was impressed with the information the researchers and the parents shared. Clearly, parents are not getting the support they need from the majority of medical professionals, who lack knowledge of autism and who may see it only as a psychological issue instead of a medical condition that can be treated to improve behaviors. With the increasing rate of autism, medical professionals need training to understand various issues concerning autism so that they may treat their patients appropriately. In the meantime, parents must educate themselves in alternative methods and therapies so that they can help their children get better. Our children deserve no less.

“An unreliable messenger stumbles into trouble, but a reliable messenger brings healing.” Proverbs 13:17

Parent or Guardian

Recently, I read two excellent blog entries written by mothers of children with autism who explain the process involved in being named their children’s legal guardians once they reach the age of eighteen.  Both mothers candidly describe the heartache they feel in taking legal action to make sure they will be able to make critical decisions for their children who cannot make those decisions for themselves. As Kim Stagliano explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.”

Similarly, Liz Becker shares her internal conflict about becoming her adult son’s guardian in “Guardianship and Autism,” noting, “In order to become the legal guardian and conservator for my autistic son, the court had to first find him incompetent to manage his own affairs. It was (and still is) a very emotional process. It is something that I had to choose to initiate because I knew Matt needed me to do it--but that doesn’t mean I took it in stride. It literally took years of thoughtful contemplation to even begin the legal process.”

Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”

Some of these rights that can be restricted once a disabled adult is deemed incapacitated or incompetent and requiring a legal guardian include the right to obtain a driver’s license, the right to own property, and the right to vote.  If parents wish to have some control over their disabled adult child’s affairs but not obtain guardianship, they may have legal papers drawn naming them as health care representatives and/or giving them power of attorney. In addition, Social Security may name a parent as a representative payee to oversee the distribution of disability benefits; similarly Medicaid may also name a parent to act as the adult child’s health care advocate. However, at times the adult with a disability may be required to sign his or her name on paperwork.

Although Ed and I have discussed and debated the pros and cons, we have opted not to seek legal guardianship of Alex at this point. Certainly, I respect the decision of those who have sought legal guardianship of their adult children and can imagine what a difficult decision that must be. When Alex was hospitalized last spring, we realized for the first time that we could no longer make some health care decisions for him since he was an adult. Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s health care representatives so that we could make decisions regarding his medical care. I would recommend that parents of children with autism have this paperwork in place and ready when they turn eighteen instead of being caught unprepared in an emergency, as we were. We had assumed that as Alex’s parents, we would be able to make medical decisions for him, but we were wrong. Now that we have the legal papers naming us as Alex’s health care representatives, we take copies with us to every medical appointment so that we can be directly involved in Alex’s health care.

When we were filling out the countless forms last spring to obtain disability benefits for Alex, the question arose over and over as to whether we were Alex’s legal guardians. I found this somewhat surprising because none of my friends with adult children who have disabilities have sought legal guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how common parents having legal guardianship is for adult children with autism, and she said that those whose parents could afford the legal fees typically obtained guardianship.  Since Social Security has named me as Alex’s representative payee to oversee the spending of his disability benefits, and Medicaid has approved me as his health care representative, we don ‘t feel the need at this point to seek legal guardianship. The government allows us to manage his finances and benefits, and the health care representative legal papers permit us to make decisions regarding his medical needs. For everything else, Alex is capable of signing his illegible signature, and he seems proud that he can do that for himself.

With the upcoming elections, Alex eagerly awaits his first time to vote for the President. As he has in every election since he turned eighteen, Alex considers the candidates and issues before making his decision and exercising his Constitutional right to vote. Just as I have in the past, this year I will again help him apply for an absentee ballot, for which he qualifies as a disabled adult, and he will proudly mark his ballot at home. To think of denying Alex his right as a citizen of the Unites States and his joy in participating in one of the rites of adulthood reconfirms our decision not to seek legal guardianship for him. In addition, the eternal optimist in me hopes that someday he will be more independent and not need us to make decisions for him. Relying on faith, we pray that having him declared incompetent will never be necessary, and we know with God all things are possible, including healing that would allow Alex to enjoy fully the freedom we cannot deny him at this point.

“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 9:2-3