ACADEMY PUBLIC POLICIES

What is Autism? Do you know the signs?

Are dietary interventions helpful to autistic children?

Yes, but, not in the way some parents think. Autistic children can suffer problems from a poor diet. On the one hand, they can be very picky eaters, limiting their diet to only a few food items that may not contain all the nutrients a child needs. A balanced and nutritious diet is important and should be a goal for parents. On the other hand, obesity can become a problem for some autistic children. As they get older and are able to open the refrigerator and reach pantry cabinets, it can become difficult to put limits on how much they eat.

Further, encouraging children to exercise safely is a challenge for most parents. Discussions with the child’s pediatrician or a licensed dietician can be helpful in designing an appropriate diet for an autistic child. However, this is often not the dietary advice some parents seek. In an effort to do everything possible to help their children, many parents continually seek new diets as a form of treatment for symptoms or as a cure for autism. Unfortunately, there is no scientific evidence that supports any diet as a treatment for behavioral symptoms or a cure for autism.

Not all advertised treatments are concocted by charlatans with the intent to defraud desperate parents. Some treatments are developed by reputable therapists or by parents of a child with autism who sincerely believe their diet will help. It may even have appeared to help in some child treated with it. An unproven treatment may help one child, yet may lack any benefit to another or may even be harmful. Without subjecting each diet to scientific scrutiny, no statement can be made about the treatment’s effectiveness or safety.

Scientific scrutiny implies that an experimental trial is performed on a large group of autistic children by objective researchers. Typically, researchers randomly assign the autistic children into two equal groups of children of similar ages and disabilities. One group would receive an intervention, such as a new diet, medication, or nutritional supplement. The other group would receive a sham treatment or placebo pill. None of the examining doctors, the parents, or the autistic children would know who was getting the real treatment. After the trial was over and all the children were evaluated, the doctors would learn which group received the “active treatment” and which group received the placebo or sham treatment. If there were no detectable differences between the groups, then the treatment would be determined to be ineffective. If there were a significant improvement in the treatment group, it would imply that the treatment was effective in improving autistic symptoms. This type of experiment is called a randomized, double-blind trial and it is the basis for all new treatments accepted by the FDA. Unfortunately, most dietary treatments have not been subjected to this type of evaluation.

Term:

Autistic - children can suffer problems from a poor diet.

What are some common dietary interventions used to treat autism?

Most dietary interventions used to treat autism are based on one of two unproven assumptions. The first is that food allergies cause the symptoms of autism and the second is that autism is caused by a deficiency of a specific vitamin or mineral.

Food allergies. An idea that has gained currency among some parents holds that autism is caused by an allergy to gluten or casein. Gluten is an insoluble protein that is found in the seeds of various cereal plants-wheat, oats, rye, and barley. Gluten is a mixture of various proteins including gliadin, glutenin, and prolamins. Casein is the principal protein in milk and chief constituent in cheese. Because cereals and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is difficult. No scientific evidence supports the idea that a low or gluten-free diet improves the symptoms of autism. There is a similar lack of evidence for casein free diets.

Dietary supplements. Some parents feel that supplementing their child’s diet with vitamins and minerals, such as vitamin B6 and magnesium, is beneficial for an autistic child. The results of research studies on these supplements are mixed; some children respond positively, some negatively, some not at all or very little. Most authorities on autism do not recommend this.

William’s comment:

I have heard about this type of therapy-where a kid is cured of his autism by changing his diet. Of the people who have told me of these cures, none knew the parents or child who was cured personally. I have to question if they were autistic to begin with. I’ll believe it when I see it.

Control of dietary yeast. Some have hypothesized that children suffer from autism because of an overgrowth of yeast in their intestinal tract or bloodstream. They believe that this overgrowth may contribute to or cause the behavioral and medical problems in individuals with autism, such as confusion, hyperactivity, stomach problems, and fatigue. The use of nutritional supplements, antifungal drugs, and/or a yeast-free diet has been suggested as a way to reduce the behavioral problems.

No scientific data support this theory of disease or treatment and it is not recommended.

It must be stressed again that the cause of autism is unknown and that dietary interventions have not been shown to improve the symptoms of children with autism.

If, despite what is written here, parents decide to implement a special diet or to give their child a dietary supplement, they should be sure that the child’s nutritional status is measured carefully. Discussing the proposed diet with a physician or qualified dietitian is recommended.

Term:

 Gluten-free/casein-free diet - A diet believed by some to help improve the symptoms of autism. It involves elimination of gluten (a protein found in wheat and other grains) and casein (a protein found in milk) from the diet. It is believed, although not proven, that the undigested portion of these proteins acts likes a chemical in the brain, producing symptoms in children with autism. No scientific evidence supports this theory.

Is secretin helpful in treating the symptoms of autism?

Secretin is a hormone produced by the small intestines that helps in digestion. It is currently approved by the FDA as a single injection to aid in diagnosis of a gastrointestinal problem. Some parents have reported that after undergoing a diagnostic test that utilized secretin, their child’s symptoms improved. Some physicians have reported that after injections of secretin, a patient has shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Eager parents have sought out practitioners to administer secretin to their children. Equally eager, but less scrupulous physicians have offered injections and infusions of secretin. These treatments were often given in complex regimens, over long periods of time, and often at great cost to the parents in terms of finances, time, convenience, and emotion. The child was subjected to the discomfort of injections and the fear of the unknown as well as being taken away from traditionally and scientifically valid treatments. Ultimately, little change was noted in the child and the parents were emotionally crushed.

The scientific basis of how secretin might work has not been described. Despite this, the theory that it can affect improvement in behaviors has been subjected to multiple scientific tests. Disappointingly, the several studies funded by the National Institute of Child Health and Human Development (NICHD) have found no statistically significant improvements in autistic symptoms when compared to patients who received a placebo.

It is also important to remember that secretin is approved by the FDA for a single dose; there are no data on the safety of repeated doses over time.

Researchers have noted similar behavior patterns between autistics and opiate addicts such as social withdrawal, self stimulation, and high levels of pain tolerance.

Jake: Math prodigy proud of his autism

Is naltrexone helpful in treating autism?

In the late 1970s, studies of neonatal animals exposed to high levels of opiates revealed that they exhibited autistic-like withdrawal after they were born. Further, opiate-treated animals exhibited unusual hyperactivity and repetitious (preservative) behaviors much like autistic children. Additionally, researchers have noted similar behavior patterns between autistics and opiate addicts such as social withdrawal, self-stimulation, and high levels of pain tolerance.

Scientists are aware that the body produces its own natural opiates, called endorphins. Endorphins are produced in the body to decrease pain and can be experienced after hard exercise; for example, in the so-called “runner’s high.” Some researchers theorized that autistic individuals have too much beta-endorphin in their central nervous system and that the self stimulatory and self-injurious behavior of typical autistic children is an attempt to increase the production of those endogenous opiates (or endorphins.) This is referred to as the addiction theory of autism. The use of the opiate antagonist, naltrexone, to treat autism followed. This addiction theory goes on to suggest that naltrexone, a drug that blocks the effects of both external and internally produced opiates, should have a beneficial effect on autistic children. Using naltrexone in the treatment of autism appeared reasonable because it is known to antagonize opiate receptor activity in the brain and is an FDA-approved treatment for substance-use disorders such as heroin addiction and alcoholism as well as opiate overdoses. Although primarily a safe drug, naltrexone is not without side effects. When studied in alcoholic populations and in healthy volunteers in clinical pharmacology studies, results have suggested that a small fraction of patients may experience an opioid withdrawal-like symptom complex  consisting of tearfulness; mild nausea; abdominal cramps; restlessness; anxiety; and bone,joint, and muscle pain; as well as nasal congestion symptoms. The safety of long-term use of naltrexone in autistic people has not been studied. A large number of uncontrolled reports support the effectiveness of naltrexone in the treatment of autism. However, the five controlled trials that are available are far less encouraging. The value of naltrexone treatment as a routine trial for hyperactive, self-injurious autistic children remains debatable. Despite encouraging anecdotal reports describing behavioral improvement in one or a few patients, when subjected to strict scientific studies, the results were less impressive. At present, eight double-blind placebo-controlled trials exist on this topic. They conclude that naltrexone is at best minimally effective in the treatment of autism. Naltrexone should not be utilized as a first-line drug in the treatment of autism and generally is not employed by specialists in autism.

Terms:

Endorphins - Implicated in the regulation of pain perception, social and emotional   behaviors, and motor activity. Once thought to be a cause of autism.

Addiction theory of autism - The belief that an overabundance of naturally produced opioid compounds (called endorphins or encephalins) is the cause of autism.

Naltrexone - This drug blocks brain cell receptors for opioids, natural opium-like substances produced by the body that may be abnormally high in autism.

 What is chelation therapy?

Heavy metal toxicity can cause a wide range of problems including severe injury to the body organs and the brain. Chelation therapy is used to treat these toxic exposures.

Chelation therapy involves the use of chemical compounds to bind several types of heavy metals that are present in toxic concentrations in the body. These medications can be injected into the vein, the muscle, or can be taken by mouth. They work by binding to the toxic compound and then are easily excreted from the body in the urine or feces. Chelation therapy was first developed by the U.S. Navy as a way of removing toxic metals from the bodies of military personnel exposed to high concentrations of lead during the 1940s. Since that time, it has been used in the treatment of people exposed to lead paint particles and other environmental exposures. Chelating agents are approved for use by theFDA, but have limited medical indications. Chelation therapy is medically indicated when a patient is exposed to toxic levels of heavy metals such as iron, arsenic, lead, and mercury. It is a recommended treatment by the American Academy of Family Practice and the American Academy of Pediatrics for this purpose. The conditions that chelation therapy is used to treat include:

• Lead toxicity most commonly occurs with young children exposed to old houses with lead paint dust or chips. Occupational exposure (soldering, welders, smelters, battery reclamation) is also a risk. Lead screening for children has now become a standard part of a doctor’s visit for children in most states.
• Mercury toxicity almost always occurs with high-risk occupational exposures including dental workers, manufacturers of batteries and thermometers, tannery work/taxidermy, and contaminated seafood.
• Arsenic poisoning usually occurs from exposure to insecticides, herbicides, rodent poisons, veterinary parasitic medications, or intentional poisoning.

 Iron toxicity usually occurs when a child ingests an overdose of iron pills. Iron pills are used as a supplement to dietary iron in treatment of patients with low blood counts (anemia). Although there are other heavy metals (cadmium, manganese, aluminum, cobalt, zinc, nickel, copper, and magnesium) that can cause illness when a patient is exposed to high doses, these exposures are extremely rare. Common chelating agents include:

 Desfuroxamine mesylate: used for iron toxicity; intravenous is the preferred route of administration

Dimercaprol (BAL): the preferred agent for treating arsenic and mercury toxicity, given as an intramuscular injection

DMSA: an analogue of dimercaprol that can be given orally for lead and arsenic poisoning

D-penicillamine: an oral chelating agent used for lead, arsenic, or mercury poisoning; much less expensive but not as effective as DMSA

Calcium disodium versante (CaNa2-EDTA): can be used in conjunction with BAL in lead toxicity; never used alone in treating lead toxicity because it chelates only extracellular, not intracellular, lead.

Succimer: an orally active, heavy metal–chelating agent; indicated for the treatment of lead poisoning in pediatric patients.

Diagnosis of heavy metal toxicity is serious and must be made by a physician based on clinical symptoms in conjunction with laboratory testing. Chelating agents can be toxic, causing rashes and liver and kidney injury as well as bone marrow suppression with low white blood cell counts (neutropenia). While these agents have no effect on diseases such as atherosclerosis, Alzheimer’s disease, Parkinson’s disease, or autism, they can remove other essential metals from the blood such as iron, zinc, copper, and magnesium. Deficiencies resulting from chelation agents can cause adverse health effects. Therefore, chelating agents should not be used unless heavy metal toxicity has been diagnosed in a reputable laboratory and therapy is monitored by a qualified physician.

 Term:

Chelation - The formation of a complex between a metal ion and two or more polar groupings of a single molecule. For example in heme, the Fe2+ ion is chelated by the porphyrin ring. Chelation can be used to remove an ion from participation in biological reactions, as in the chelation of Ca2+ of blood by EDTA, which thus acts as an anticoagulant. A chelating agent will bind with metals in order to try to release them from the body.

 What it's like to have a Brother with Autism

Can chelation therapy help my autistic child?

Concerns about mercury contained in vaccinations have prompted concerned parents and others to theorize thatmercury is the cause of autism. As a result, some practitioners have begun using chelating agents as a treatment for autism. According to this theory, once the mercury is removed, its toxic effects are eliminated, and the individual begins to show improvement in autistic symptoms.

The most vocal proponent of chelation therapy for diseases other than heavy metal toxicity is the American College for Advancement in Medicine (ACAM). In contrast, the overwhelming opinion of the traditional medical community is that effectiveness of chelating agents used to treat other diseases is unproven and should be avoided. The traditional medical community does not recognize ACAM as an authoritative source of clinical information. The few studies that exist attempt to demonstrate the effectiveness of chelating agents in the treatment of cardiovascular disease. There are no studies that demonstrate the effectiveness of chelating agents in improving autistic symptoms or other symptoms of developmental diseases. The Autism Biomedical Information Network lists chelation as an unproven treatment. They point out that no reliable research studies have been made on many treatments being offered as alternatives to traditional autism treatments, and that most of the information available on their effectiveness is anecdotal rather than based on valid scientific research techniques. Cure Autism Now (CAN), a leading autism research organization, called for research proposals to investigate the effectiveness of chelation therapy in autism treatment. They state that since no research studies exist that validate the claims of those who support chelation as a treatment ofautism, chelation should be considered unproven and its safety and effectiveness still undetermined.

Compounding the lack of supporting scientific evidence is the mercenary behavior of practitioners using chelating agents. A typical therapeutic program is long and costly. Treatment costs can run between $75 and $125 per session. Parents are told that their child must undergo between 20 and 100 treatments before showing results. Because this is an unapproved treatment and not covered by health insurance, parents are expected to pay in cash. Other physicians point out that some chelation therapists attempt to secure insurance coverage by misrepresenting the patient’s treatment to the insurance companies, therefore practicing insurance fraud rather than medicine. Until valid research is conducted and chelation is approved for use in the treatment of autism, it is recommended that it be avoided.

 Treatment costs can run between $75 and $125 per session.

 How long does it take for Social Security to determine if my child is disabled?

The disability evaluation process generally takes several months. However, the law includes special provisions for people (including children) signing up for supplemental security income (SSI) disability whose condition is so severe that they are presumed to be disabled. In these cases, SSI benefits are paid for up to 6 months while the formal disability decision is being made. Keep in mind, these payments can be made only if the child meets the other eligibility factors. The following are some diagnoses where the government will make a presumption of disability and will make immediate SSI payments:

•  HIV infection
• Total blindness
• Total deafness (in some cases)
• Cerebral palsy (in some cases)
• Down syndrome
• Muscular dystrophy (in some cases)
• Mental retardation
• Diabetes (with amputation of one foot)
• Amputation of two limbs
• Amputation of leg at the hip
•  

If parents take these payments and the government later decides that the child’s disability is not severe enough to qualify for SSI, the benefits do not have to be paid back.

 Supplemental security income (SSI) is a need-based  program that provides cash assistance to people with limited income and assets who are age 65 or older, disabled, or blind. Children can qualify if they meet Social Security’s definition of disability. SSI is funded by the federal government and is administered by the Social Security Administration (SSA).

As its name implies, SSI supplements a person’s income up to a certain level. The level varies from one state to another and can go up every year based on cost-ofliving increases. Recipients of this benefit also receive

Medicaid. Your local Social Security office can tell you more about the SSI benefit levels in your state. Supplemental security income is not Social Security. Social Security is a program that provides retirement benefits, survivors’ benefits, and disability benefits to people who have worked enough to qualify or to their spouses and children. The benefits are based in part on payments made to Social Security while working.

Most people over the age of 65 receive Social Security payments.

 Terms:

Supplemental security income (SSI) - A federal assistance program administered by the Social Security Administration for aged, blind, and disabled persons under Title XVI of the Social Security Act to guarantee a certain level of income. SSI recipients have contributed nothing or not enough to the Social Security System to be able to receive benefits on their own earnings record.

Medicaid - Title XIX of the federal Social Security Act and 42 CFR 430 to 456; pays for medical care for low-income persons; is a state-administered program.

 What is Autism? Do you know the signs?

How does the government decide if a child is disabled?

While your local Social Security office decides if your child’s income and assets are within the SSI limits, all documents and evidence pertaining to the disability are sent to a state office, usually called the Disability Determination Service (DDS). There, a team consisting of a disability evaluation specialist and a medical or psychological consultant reviews your child’s case to decide if he or she meets the definition of disability.

If the available records are not thorough enough for the DDS team to make a decision, you may be asked to take your child to a special examination that SocialSecurity will pay for. It is very important that you do this and that your child puts forth his or her best effort during the examination.

As you can see, it is imperative to collect, organize, and safely store all of your child’s school records as well as records of psychological, neurological, and medical examinations.

They will continue to be examined as long as your child requires medical care or insurance benefits.

The law states that a child will be considered disabled if he or she has a physical or mental condition (or a combination of conditions) that results in “marked and severe functional limitations.” The condition must last or be expected to last at least 12 months or be expected to result in the child’s death. In addition, the child must not be working at a job that is considered to be substantial work by the government.

To make this decision, the disability evaluation specialist first checks to see if a child’s disability can be found in a special listing of impairments that is contained in Social Security’s regulations. These listings are descriptions of symptoms, signs, or laboratory findings of more than 100 physical and mental problems, such as cerebral palsy, mental retardation, or muscular dystrophy, that are severe enough to disable a child. The child’s condition does not have to be one of the conditions on the list. But if the symptoms, signs, or laboratory findings of the child’s condition are the same as, or medically equal in severity to, the listing, your child is considered disabled for SSI purposes. If your child’s impairment (s) does not meet or medically equal a listing, the DDS then decides whether it “functionally equals” the listings. They assess the effects of the condition or combination of conditions on your child’sability to perform daily activities by comparing your child’s functioning to that of children the same age who do not have impairments. To do this, they consider questions such as:

● What activities is your child able to perform?

● Which activities are limited in comparison with those of same-age peers?

● What type and amount of help does your child need to complete age-appropriate activities?

To determine whether your child’s impairment causes “marked and severe functional limitations,” the disability evaluation team obtains evidence from a wide variety of sources who have knowledge of your child’s condition and how it affects his or her ability to function on a day-to-day basis and over time. These sources include, but are not limited to, the doctors and other health professionals who treat your child, teachers, counselors, therapists, and social workers. A finding of disability will not be based solely on your statements or on the fact that your child is, or is not, enrolled in special education classes.

 In these cases, SSI benefits are paid for up to 6 months while the formal disability decision is being made.

 What are the eligibility criteria for Supplemental Security Income (SSI)?

SSI benefits are payable to disabled children under age 18 who have limited income and resources or who come from homes with limited income and resources.

This means that:

● The child must meet the government’s definition of being financially needy, or he or she must live in a home where the parents have limited income and assets.

● A child may be eligible for SSI benefits based on disability from the date of birth; there is no minimum age requirement.

● A child may be eligible for SSI benefits based on disability until attainment of age 18.

● At age 18, the government evaluates a person’s impairments against its definition of disability for adults.

When evaluating a disabled child under 18 years of age for SSI eligibility, the government looks at the parent’s income and assets. If the parents’ assets and income fall below a predetermined level and the child has a condition that meets the government’s definition of disability, then the child is eligible for SSI benefits. This applies to children who live at home or who are away at school but return home occasionally and are subject to parental control. This process is called deeming of income and assets.

If a child was ineligible for SSI benefits because of parental income, his eligibility status  an change when he reaches 18 years of age. A child who was not eligible for SSI before his or her 18th birthday because the parents’ income or assets exceeded the government’s criteria, may become eligible at age 18. The federal government does not consider the parents’ income and assets when deciding if a child over 18 is eligible for SSI.

For the autistic child who receives SSI benefits, turning 18 may have little effect on those benefits. Ordinarily, a child’s SSI benefits end when a child reaches age 18 (or 19 if the child is a full-time student). However, for the child who is disabled, those benefits can continue to be paid into adulthood.To qualify for SSI benefits asan adult, an individual must be eligible as the child of someone who:

● Is getting Social Security retirement or disability benefits

● Has died and that child must have a disability that began prior to age 22

If a disabled child getting SSI turns 18 and continues to live with his or her parents, but does not pay for food or shelter, a lower SSI payment rate may apply.

 For the autistic child who receives SSI benefits, turning 18 may have little effect on those benefits.

 Does autism usually qualify as a disability according to the Social Security Administration?

Historically, a child’s diagnosis of autism was a guarantee of qualifying for supplemental security income payments, assuming the parents met the federal earnings and resources requirements. This evaluation is carried out by employees called Disability Examiners from the child’s home state. In the past, these examiners simply looked at the diagnosis and approved the case. Things have changed since that idyllic time. The Social Security Administration (SSA) has imposed new changes and these changes have filtered down to the state Disability Determination Service (DDS) level. These changes mandate that the disability examiners look beyond the diagnosis and evaluate the functional ability of the child. According to the guide, the Disability Evaluation under Social Security, children must have “marked and severe functional limitations” in order to be found disabled.

The result of these changes is that a diagnosis of autism does not always guarantee an approval of benefitsalthough an evaluation of the child’s disabilities within that diagnosis may.

For most children diagnosed with autism, meeting the requirement of marked and severe functional limitation should be easy if all their documentation and reports reflect their disabilities honestly.

 Some problems that may result in an inappropriate benefits denial are:

 ● Evaluations and clinical reports that attempt to “spare the feelings” of the parents giving an inappropriately benign diagnosis or one that is purposely vague.

● Reports of clinical improvement under limited conditions, such as:

● Within a limited time frame: For example, “the child’s violent outbursts have decreased over the past 3 days” does not mean they are gone forever.

● While with a particular teacher: Some teachers can exert better control over children or tend not to report poor behavior for other reasons.

● While treated with a particular medication: Although a medication may make a real improvement, it is not necessarily sustained nor does it necessarily improve other behavior. For example, an antidepressant may improve a child’s social withdrawal; however, it does not follow that na improvement will occur in his disabling tendency to wander or be inattentive in class.

● Variability in interpretation of the benefits eligibility standard: The disability examiner alone determine disability.

● This determination is based on a personal definition of the terms used in the listings.

● Disability examiners may have little or no experience with the evaluation of autistic children.

● The disability evaluators are charged with interpreting the guidelines without adequate training in the subtleties of autism diagnosis and behaviors.

For example, one of the biggest problems in the Social Security Listings for autism/PDD is found in Listing 112.10 A1b. It calls for the child to have “Qualitative deficits in verbal and nonverbal communication and in imaginative activity.” Some disability evaluators may interpret this to mean that a profoundly retarded autistic child with behavioral problems that included violence and self-abuse would not be eligible for disability because one of the child’s evaluations stated that the child appeared to have capacity for imaginative play.

Parents may be the only advocate a child has in this process. It is their duty to assure that their child gets the benefits they are entitled to. A fair decision can be made if accurate information is provided to the disability evaluator. Parents should see to the following:

● Make sure all physicians, psychologists, teachers, and therapists provide an honest and complete evaluation of the child.

● Their statements should show the full severity of the disability. The evaluations should report how the child behaves at a normal functioning level, not just when he or she is having a good day. Examples of  the problem behavior should be included.

● Review the child’s individual educational program (IEP) carefully. Make sure all the diagnoses arecorrectly recorded and that a clear and comprehensive list of the child’s disabilities is made.

● Review reports of behavioral or communicative improvements. Make sure they adequately reflect the conditions under which the behavior was observed, what conditions were required to achieve those improvements, and how long the improvement lasted (or was observed).

● Contest and demand clarification or revision on any evaluation that does not honestly reflect the child’s ability.

 Parents may be the only advocate a child has in this process.

 Next: What is Medicare?