My son is 17 and has severe autism. For many, many years, he suffered terribly with failure-to-thrive issues because of his aversion and bizarre sensory issues to many things, including food. He would go on what we called starvation diets; for days, he would eat absolutely nothing. I can remember giving him just about anything just so that I could get him to eat something.

When he was 14, out of complete desperation, we placed him on a restrictive diet. We removed gluten, casein, corn, soy, all sugars and dyes. He refused to eat anything at all for five days, but at the end of day five, something miraculous happened; our son said his first meaningful word ever since slipping into autism at 18 months of age. He said, “Eat!” He then proceeded to eat a huge plate of chicken, rice and vegetables. When he finished, he said, “More eat!”

Since that day, he is now eating a large variety of healthy whole foods, and he now says approximately 800 words. Daily he adds to his knowledge. He is now partially verbal, no longer self-abusive or aggressive, and his sleeping issues have been resolved.

I understand where the mother in the previous article was coming from, and yet I completely know what you are saying is true, as well. However, I don’t believe you went far enough into exploring the multifaceted issues with food needs for children with autism. I am hoping that you will take up the cause, especially since you already support living without flour and sugar.

DEAR READER: There are several disorders that make up autism spectrum disorders (ASD), also known as pervasive developmental disorders (PDD). Those affected experience repetitive behavior or interests, the diminished ability to interact socially and problems with verbal and/or nonverbal communication. Often, sufferers display unusual responses to sensory experiences, such as certain objects, sounds, foods and more.

Autism was first defined in 1943, making it very new in terms of medicine. Currently, there is no known cause, no specific treatment and no cure. Management is based on the specific needs of the child; therefore, what works for one child may not work for another. Experts agree, however, that early diagnosis and treatment are the best means to lessen symptoms and improve quality of life for these children.

Of the possible treatment options, some parents may wish to try dietary changes. This theory is based on the idea that symptoms of autism may be caused or worsened by food allergies and/or a vitamin deficiency. A gluten- and casein-free diet has helped some children, such as your son. Gluten is found in wheat, oats, rye and barley, and is therefore in many fortified foods, such as cereals, breads, baked goods and more. It is the same substance that causes bowel problems in those with celiac disease. Casein is found in dairy products. Eliminating these two substances from the diet can prove difficult because of their prevalence, but, as you have found, it’s worth it if it helps.

Some parents have also found that adding a vitamin B6 supplement along with magnesium (to make the vitamin more effective) improved symptoms. Studies are mixed, however, with some children showing positive results, others negative and still others experiencing little or no effects at all.

Any parent with a child who suffers from one of the disorders on the autism spectrum knows the unique difficulties in caring for these children. Thank you for sharing your amazing results and experience.

About 8 months ago he began having difficult and painful swallowing, indicating pain from his neck, along the esophagus, to his stomach. It was torture for him to eat and torture for us to watch him. He lost 10 pounds over Christmas break. Our family doctor put him on Prevacid 30 mg daily. Within two days he was able to eat. He’s also been on a multi-vitamin, amino acids and digestive enzymes for years. Although he is now eating, he still experiences pain in his throat for up to 2 hours after each meal.

He’s had a barium swallow, thyroid ultrasound, thyroid blood test, endoscopy, and an X-ray and CT of his neck. All were negative. A video swallow study indicated a possible hypotonic esophagus because the food didn’t always go all the way down and there was one instance of aspiration to which my son did not react. After this limited amount of food during the test, he didn’t have any discomfort. At home he can eat a small snack on occasion without being affected, and at other times he can have one cookie and be severely affected. Routinely, he is always affected after a meal.

A local ENT wants to take his tonsils out, saying it may help. While removing the tonsils, he can look around to see if there are any problems.

Between all the waiting to get in to the various doctors, having the tests, and getting the results, we tried a very restricted diet on the advice of a chiropractor. My son went three weeks with no gluten, casein, soy, refined sugar, white potatoes, nothing modified or partially hydrogenated, and no chemicals. This didn’t help.

His doctors feel they have nowhere else to go, nothing else to check, and he will have to live with it. We are desperate and that is why I am writing to you. No child should have to live in pain like this. For a child with autism to be out of commission following a meal is a huge detriment to his development, both at school and at home. I hope you can help because nobody else can.

DEAR READER:
Autism is characterized by impaired social interaction, difficulty with verbal and non-verbal communication, repetitive or severely limited activity and interests.

Your son appears to have a mild case of autism and is coping well, but the hypotonic esophagus remains an enormous issue.

The esophagus is a tube that carries food from the mouth to the stomach. Based on your description, I believe that your son has a condition known as esophageal achalasia. This condition causes the esophagus to move food ineffectively toward the stomach. This occurs when the muscles between the esophagus and stomach don’t relax sufficiently during the process of swallowing food or liquids. This rare disorder is common in middle-aged and older adults, but can occur at any age. Symptoms include heartburn, unintended weight loss, cough, regurgitation and difficulty swallowing liquids and solid food.

When an upper GI or barium esophagram reveals abnormal muscle contractions, an enlarged esophagus and/or narrowing at the bottom of the esophagus, diagnosis is confirmed by esophageal manometry. During the hour-long procedure a thin, pressure-sensitive tube is passed through a patient’s mouth or nose, into the stomach. Once in place, the tube is drawn back slowly into the esophagus. The patient will then be asked to swallow. Muscle contraction pressure will be measured throughout several sections of the tubing. The tube is then removed at the end of the procedure.

Preparation for manometry simply calls for no food or drink for eight hours prior to the procedure. A slight discomfort and a gagging sensation can be experienced during tube insertion. Risks include an increase in salivation that can lead to lung injury or aspiration pneumonia.

Therapy can include calcium channel blockers and long-acting nitrate medications that have been used successfully on some patients to lower the pressure in the lower esophageal sphincter.

Injections with botulinum toxin (Botox) paralyze the lower sphincter to prevent spasm.

Esophagomyotomy is an invasive surgical procedure to decrease pressure in the lower sphincter.

Whatever treatment is deemed appropriate, the ultimate goal is to widen the lower sphincter and eliminate the problems your son is experiencing. Speak with his physician or specialist to determine if any of these options might be in his best interests.

To give you related information, I am sending you a copy of my Health Report “Medical Specialists”. Other readers who would like a copy should send a self-addressed, stamped, number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.