The Battleground

Autism advocates want to see more states follow the example set forth in Indiana, which requires insurance companies to cover costly behavior therapy for autism. Since 2002, six states — Texas, Pennsylvania, South Carolina, Arizona, Florida, Louisiana — passed laws requiring this type of coverage. In some cases, it saves families up to $50,000 a year. Parents have shared stories of how the behavior therapy has helped their autistic children. Arzu Forough’s son, from Washington, was taught, at the age of 3, to make a sound when he wanted a drink of water.. Now, at 12, he is learning to share his feelings instead of throwing tantrums. Applied Behavior Analysis (ABA) often uses a reward system to help autistic children learn new communication and behavioral skills, and parents see positive results.

In 2008, Autism Speaks endorsed bills in New Jersey, Virginia, and Michigan to ensure this coverage is available. In 2009, it hopes to back similar bills in Ohio, New  York, and California. Lawmakers find themselves in a difficult position since voting against these bills is a vote against families. In the financial bailout plan passed in October 2008, a measure was tacked on to the bill requiring insurers to make coverage for mental health patients equitable with other health coverage. Advocates with Autism Speaks applaud the additive measure, but state that it does not benefit autism patients since autism is not a psychological condition and it is not covered under mental health services.

Here is a list of some of the most commonly used chelators:

• DMPS (sodium dimercaptopropanesulfonate): This is not approved by the Federal Drug Administration (FDA) for use in the United States, but is commonly used in Europe. DMPS is mainly used for removing mercury, but does not have an established safety profile.
• DMSA (dimercaptosuccinnic acid, or Chemet): DMSA is FDA approved for removing lead and for treating mercury poisoning. It is also an antioxidant that can help with the antioxidant depletion common in autistic children.
• EDTA (ethylenediaminetetraacetic acid): Particularly effective for lead removal. If not administered properly, it can be life threatening.

When studied in animals, lead chelation therapy has shown to significantly reduce learning and behavioral problems resulting from lead exposure.

As there are over-the-counter oral chelation treatments available, it is important to note that you should have your child thoroughly tested for high metal levels before beginning chelation therapy. When rats with no lead in their systems were treated with lead removing chelation products, they showed declines in their learning and behavior. Symptoms were similar to those with lead poisoning.

If high levels of lead are present, it is critical that the lead is removed as soon as possible. Long-term exposure to lead can cause lasting damage to the brain. High lead exposure can lead to coma, convulsions, and even death. At lower levels, symptoms include attention deficits, difficulty controlling emotions, and lower IQ scores.

Wheat and Dairy Free

After receiving a diagnosis of autism, most doctors will suggest that you have your child follow a gluten-free (wheat, oats, rye, and other grains) and casein-free (milk and milk by-products) diet. It is believed that gluten and casein contain proteins that break down into molecules that resemble opium-like drugs, or that they cause an abnormal immune response and the body responds by attacking itself. There have been no research studies into the gluten/casein free diet and its effects on autism. Some parents report improvements in speech and behavior after making the change. Others, report a decrease in cases of diarrhea.

It is suggested that you begin the process slowly and remove dairy from the diet first. Remove milk, first, as the body clears itself of milk casein the fastest. Keep your child dairy free for at least two weeks. You should see subtle changes within the first few days, but definitely within the first few weeks. If you are not observing any improvements, try to introduce a small amount of milk back into the diet to see if there is any sort of reaction. Should you see a sudden deterioration of behavior after reintroducing milk in the diet, revert back to no milk. This shows that the child is sensitive to dairy products. If you add milk back into the diet, and see no change, it could be that dairy does not trigger a food sensitivity.

Once you have the milk-free portion of the evaluation figured out, remove gluten from the diet. It takes longer to see a change from the gluten removal, often up to 3-6 months. Research food options to find anything that contains even suspect trace amounts of casein or gluten. If your child is indeed sensitive to casein or gluten, even ingesting a small amount will cause a reaction.

Yeast

Some doctors and researchers believe that yeast may also cause some of the symptoms experienced by autistic children. An overgrowth of yeast can cause a condition called leaky gut. Leaky gut is a health condition which is caused when tiny holes in the intestinal tract allow molecules, such as proteins, to escape the large intestine. Subsequently, the opium-like (opium is a narcotic that contains morphine) molecules are absorbed into the bloodstream. Once in the bloodstream, the molecules travel to the brain and can cause symptoms such as confusion, hyperactivity, fatigue, and stomach problems. Since wheat and casein contain proteins which break down into molecules that replicate opium-like drugs, removing these from the diet will help eliminate the symptoms caused by leaky gut. This is still a controversial theory that is undergoing a great deal of thorough research.

Refined Sugars and Processed Foods

Removing foods from the diet that contain refined sugars, along with processed foods, may also improve your child’s ability to function. Avoid the following:

• soft drinks and high-sugar juices
• nitrites and nitrates
• artificial colorings
• artificial sweeteners
• monosodium glutamate (MSG)

Whole foods such as fresh fruits and vegetables are best. Reading food labels is important, however figuring out what exactly is in foods can be difficult to decipher. The longer the list of ingredients, the greater likelihood that the food contains unfavorable additives. If you can’t pronounce it, you probably don’t want your child to eat it! Whatever changes you choose to make, keep a food diary to track the diet and any notes about the affects on physical or behavioral symptoms. These physical changes, besides behavior, can include drowsiness, irritability, stomachaches, changes in sleep patterns, or changes in bowel function.

As mentioned, there is not hard research supporting a link between autism and diet. But, if it even mildly helps you child, it may be worth a try. This methodology does not involve any medication, so in the end, it can only improve the overall health of your autistic child.

Behavioral Therapy

By using positive reinforcement and social skills training, autistic children can work through behavioral training to improve their behavior and communication. Different treatments that have been developed that are used in autistic behavioral therapy and they include:

• Applied Behavioral Analysis (ABA): A way of teaching and reinforcing appropriate behaviors. 
• Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH): A public health program that uses varying combinations of ABA and other behavioral therapy models such as Developmental Individual Difference and the Relation-Based Model.
• Sensory Integration: Therapy designed to reduce sensory overload by helping the brain organize information received from the senses.

Specialized Therapies

Additional therapies that can become important components of an autistic child’s treatment plan are:

• Occupational therapy: Used to help the autistic child learn how to process information from the senses in a way that is more manageable.
• Speech therapy: This technique helps the autistic child develop his/her speech and social skills.
• Physical therapy: This will improve deficiencies with coordination and motor skills.

Drug Therapy

Certain symptoms of autism may require medications in order to get them controlled. Therapy often focuses on symptoms that risk harm to the autistic child or others. Symptoms that interfere with other treatment programs may also require medication to control. These symptoms include:

• aggression
• self-injury
• obsessive compulsive behaviors
• depression

Medications cannot cure the underlying cause of autism, but some medications that may be prescribed for the above symptoms are:

• antipsychotics
• stimulants
• antidepressants
• anti-anxiety medications

Before enrolling any child in a drug therapy program, parents need to research what the medication is prescribed to do, as well as the limitations of the drugs. Discuss with your doctor any side effects and learn exactly what the goals are in pursuing drug therapy. 

Not all therapies will be effective for every child. Work with your doctor and therapists to track how certain therapies are helping your child and don’t be afraid to admit failure and move on to another option.

Behavioral Assessments

Doctors use a variety of guidelines and questionnaires to diagnose developmental delays in children. These behavioral assessments include:

• Medical history. A nurse or doctor will go over general questions about your child’s development. You will discuss milestones that your child met and the age that they were reached.
• Diagnostic guidelines. The American Association of Child and Adolescent Psychiatry (AACP) has established guidelines that are used as assessment criteria for autism. These guidelines focus on children ages 3 and up.
• Behavioral questionnaires. Checklists are often used to rate how much a child’s behavior varies from others of the same age range. This method is used for those older than two. The Modified Checklist for Autism in Toddlers (M-CHAT) is used for children at least 2 years of age.
• Observations. A specialized physician may ask to observe your child’s behaviors in various situations. Parents will then be asked to interpret the observations and share whether the behaviors witnessed are normally present.
• Intelligence and developmental tests: Tests will also be used to determine if developmental delays are affecting the child’s ability to think and make decisions.

Physical Assessments and Lab Tests

Other tests that may be used in an autistic assessment include:

• Physical exam: This may include weight, height, head circumference, and checking to see that the child has followed a normal growth pattern.
• Hearing test: This will be used to determine if loss of hearing is a cause of developmental delays, especially those related to speech.
• Test for lead poisoning: If a child shows signs of a condition called pica then this test will be especially important. (Pica is a condition where a person craves things that are not food like chipped paint) A child with a developmental delay will continue to put things in the mouth at an older age than a normally developed child. These two actions can lead to a higher chance of contracting lead poisoning.

Depending on your child’s condition and the severity of the symptoms, your doctor will decide which assessments are necessary to achieve an accurate diagnosis.

Medical History

Parents often keep track of their child’s milestones and shot records. A basic medical history can be an invaluable tool when diagnosing autism. Whether you keep track of this information in a baby book or use a spreadsheet, keeping accurate information will make any diagnostic screening more effective. The following information is important to track:

• Location and date of birth
• Changes is eating patterns
• Infections
• Antibiotics and medications taken
• Vaccinations record
• Developmental milestones including rolling over, smiling, sitting, crawling, talking, and walking
• Changes in the child’s life such as moving, change in family structure, changing schools
• Medical procedures including illnesses, surgeries, or treaments
• Behaviors that are of concern to parents/teachers
• Records of mother’s pregnancy, including any information on complications

Make copies of all of this information so that your doctor can keep copies for your child’s file and you can keep the originals for your records.

Discussing Concerns With Your Doctor

When you first see signs in your child that lead you to consider autism, the next step is discussing those concerns with your child’s doctor. Do not go into the appointment unprepared. Use the information below to be ready for what is to come next.

1. Do not wait for your child’s next well-child check up to discuss your concerns with the doctor. When you make the appointment, be sure to tell the receptionist specifically why you are making the appointment. Ask that you be given enough time to fully discuss your concerns. You do not want to feel rushed during your visit.
2. Be sure to ask the doctor for a referral to a specialist who is familiar with the autism spectrum. You do not have to leave the office with a diagnosis. The goal is to leave with a referral to an expert who can help you take the next step.
3. Meet with the specialist so that your child can receive an assessment that will lead to a proper diagnosis.

At the Initial Doctor’s Appointment

You have already taken the first step to make an appointment that will allow ample time to thoroughly share your concerns. Prepare yourself ahead of time by making notes regarding what you want to share in this initial meeting with your child’s doctor. When you get into the exam room, you will be nervous and you do not want to leave out any critical information concerning the symptoms you are recognizing. Be sure to gather the medical history information covered above so that the doctor has everything needed to help in the decision making process. It may also be helpful to take another adult along for support whom is familiar with your child’s condition. This person may think to mention something that you do not, and can take notes for you about what is discussed.

Getting a Referral

If your doctor is hesitant to give a referral to a specialist even after you share your concerns, the following tips may help with your case.

• Do your research ahead of time and bring any articles or websites that your doctor can reference should the doctor claim to not know enough about autism to make an educated decision. With cases on the rise, it is unlikely that this will be the case, but it is better to be prepared.
• Suggest a milestone that your child should reach in the near future and agree to revisit the autism discussion should your child not reach the milestone by the suggested time.
• If your doctor does not agree to a referral, you can file an appeal with your insurance company. There may be deadlines involved, so check with your insurance carrier immediately after your appointment to get details about filing the appeal.
• If the referral is denied, ask for an explanation in writing. Some may be hesitant to do this and it may be enough to get the doctor to agree to the referral.
• You can work on your own to find a specialist. If you have to resort to this option, insurance coverage is the biggest hurdle. Start with a list of providers included with your coverage to increase the probability that coverage will be approved. 
• If you find your own specialist and the insurance will not approve coverage you may still work to change the insurance company’s decision. If the specialist does render a diagnosis of autism, get the decision in writing. Afterward, send a copy to your child’s doctor as well as the insurance company. You may be able to argue that the doctor was negligent in refusing to award you a referral and this could lead to the insurance company awarding coverage for the visits to the specialist.

Should your attempts to obtain coverage fail, you must ultimately make the decision to afford treatment without the support of insurance.