Chapter from the book
Recovering Autistic Children
Edited Stephen M. Edelson, Ph.D. and Bernard Rimland, Ph.D.

There Is Hope

By Lynn M. Hamilton

Lynn Hamilton is the author of Facing Autism: Giving Parents Reasons for Hope and Guidance for Help. She, her husband, Roger, and their three children live in Colorado. This story was written in January 2003 about their oldest child, Ryan (who was born in May 1992).

“What treatment brought your son back?”

This is the question we are asked continually. Each inquirer seems to be looking for the magic cure: the one treatment that would reverse the pain, take away all the symptoms and return life to “normal.”

Our son began life quite typically in the spring of 1992. When Ryan was born he was instantly a popular little guy. Friends and family poured in from all over to see our new arrival. He was a big baby, weighing eight pounds twelve ounces, and very healthy. Since I had a C-section, Roger was the first to hold Ryan. He stood proudly by my bed, tears flowing from his eyes. He laid our son next to me and said, “Ryan, I want you to meet your Mommy. She is a very special lady and she loves you very much.” And I did.

One thing Ryan would never be without was love. We loved to stand by his crib and watch him as he slept, his angelic face so peaceful. We loved to hold him, rock him, and sing him songs. Just being near him brought such joy, and each day that we spent with him brought us closer as a family.

Ryan's first year went by so quickly, full of laughing, loving, and learning. Each day Ryan grew and developed as any other child, hitting each milestone on time or early. However, shortly after his first birthday, things began to change.

The first thing we noticed was that Ryan lost the few words that he previously used. We had just returned from a summer in Siberia, so we attributed the loss to Ryan hearing Russian all summer. But it didn't stop there. Ryan also lost the ability to understand language spoken to him. His happy temperament disappeared and he began screaming often and loudly. Ryan's wide array of foods was no more. He insisted on just a few, specific foods, like Fisher Boy square fish patties. Square Van de Kamp's wouldn't work. Ryan knew the difference by sight and wouldn't touch them.

Besides food, Ryan developed “rules” for many things around him. His Pinocchio video cover had to remain to the left of his rocking horse on the floor. If I picked it up and put it on the video shelf, Ryan would scream and tantrum until it was put back where he believed it had to be.

Ryan also lost the ability to play and interact with us. His quick smile disappeared as he began to look through us. For a while we thought he was deaf. He no longer wanted to hear stories read to him and he didn't respond to his name, but he would sit and watch Disney videos all day. If we muted the sound, he would explode in a tantrum. It was as if he had selective hearing. If he wasn't watching a movie, he was content to sit and line up his toys in perfect lines or semicircles, or else he would put toys in a row and turn them upside-down and then turn them right-side up—over and over and over.

During the next few months, numerous specialists evaluated Ryan. After all the meetings, all the tests, and all the questions, we had our answer. Ryan had autism. Up to that point, autism had just been a word in a dictionary. Now it had become personal. Though Roger and I were devastated, we were ready to fight. We didn't know how to begin or who to turn to for answers, but we were motivated. Our son's future was at stake.

Before we knew an official diagnosis, Ryan was offered therapy from a “Birth to Three” program in our area. Through this he was given one hour a week of combined speech and physical therapy.

Once we received the diagnosis, we expanded our search for therapy, which brought us to applied behavior analysis (ABA). Simply speaking, ABA is a system of teaching complex tasks by breaking them down into bite-sized pieces that can be learned more effectively, with each piece building upon the previous one. Rewards, termed reinforcers, are given for correct responses or behaviors while those that are inappropriate are corrected, ignored, or redirected. Precise data are kept for each learning trial and adjustments are made in each educational program based upon the data.¹

Though Ryan didn't learn any words in five months of conventional speech therapy, he learned his first word on the first day of ABA. Within two months, he had over thirty words and was learning more daily! He had also learned to imitate actions and sounds, answer some simple questions, respond to simple commands, and play with blocks and cars. He learned all the letters of the alphabet and the numbers one through seven. To say the change was amazing would be an understatement. Over the next five years we used ABA with Ryan as his educational therapy. This was the beginning of setting our son free from the confines of autism.

Since we were seeing such good results using ABA, I wasn't really interested in other forms of treatment. That is, until other parents wouldn't leave me alone about trying the gluten- and casein-free (GFCF) diet. To be honest, I thought that these parents were a bit fanatical—taking away all wheat and some other grains along with all dairy products. Didn't they realize how impossible a diet like that would be? And even if we did want to try it, Ryan wouldn't eat new foods, so why bother? However, due to the pressure I was feeling from these parents, I began learning more about why this diet could be helpful.

I learned that in a healthy body, the digestive tract takes complex foods and breaks them down into substances that the body can absorb and utilize. To put it simply, food can be compared to a long chain of paper clips hooked together. Through digestion, the links of this chain are unhooked and left as single paper clips, which is the form needed for the intestine to absorb and deliver to the body for use. For children with autism, it is the digestion of certain proteins called gluten and casein that causes the most trouble. Gluten is found in wheat, barley, oats, rye, and spelt, to name a few. Casein is a protein found in all dairy products.

The problem is that our kids are often not breaking down the protein into the simple amino acid form; instead they are remaining as peptides. If proteins are comparable to long chains of paper clips, then peptides are shorter chains. Some of the digestion process has taken place, but the chain was not completely broken down into the desired amino acids. Secondly, our kids tend to have what is called “leaky gut,” which means that the intestinal wall is unable to keep the intestinal contents separate from the bloodstream. This allows the peptides to get into the bloodstream where they are not supposed to be. If these peptides are not broken down into amino acids and they are getting out of the intestine, when they reach the brain and pass through the blood-brain barrier, they act as drugs like heroin and morphine! Predictably these peptides, termed “opioids,” may radically affect behaviors.²

After learning all of this, and doing some medical testing related to it, we decided to try the diet. We didn't see any benefits at first, but we kept on with it since the medical tests showed us the diet would probably benefit Ryan. It wasn't until we had been on the diet for several months, when Ryan got a small amount of casein, that we learned about its benefits. Following a small exposure to casein or gluten, Ryan would first have a meltdown, which included aggression, anger, and irrational thoughts. After awhile, this stage would end and he would weep uncontrollably and say how sorry he was for what he did. Watching him go through these stages was like watching a drug addict become “high” and then “come down” off the drug. We were convinced, and we have been on the GFCF diet ever since.

Besides ABA and the GFCF diet, there were many other areas of treatment that brought benefits to our son, including several biomedical interventions. In my book, Facing Autism: Giving Parents Reasons to Hope and Guidance for Help, I explain the treatments we tried, how to do them, and how they worked (or didn't work) for us.

In the beginning, I knew almost nothing about treating autism biomedically. As I began to learn more about these interventions, I turned to Dr. Bernard Rimland and the Autism Research Institute. Not only has Dr. Rimland personally made invaluable contributions to all of us in the autism world, he has changed the thinking of many through the Autism Research Review International newsletter, Defeat Autism Now! conferences, and the Defeat Autism Now! Protocol. Although there are many biomedical treatments that have helped Ryan, let me focus on how one aspect of Dr. Rimland's work brought benefit to our little guy.

Over the years the Autism Research Institute has gathered data from parental reports on the effectiveness of certain drugs and supplements, and found that certain nutrients have been beneficial to children with autism. One supplement that stands out is vitamin B6 when combined with magnesium. Vitamin B6 has long been promoted as a treatment for autism, with the evidence for its effectiveness growing. The first studies were done in the 1960s, with 18 published studies to date. Each study has shown beneficial effects of vitamin B6, often combined with magnesium, while none has shown harm. The benefits that have been seen range from improved language, eye contact, and behaviors, to decreasing the “excretion of abnormal metabolites in the urine, improved brain electrical activity, improved conditionability, and improved immune system function.”³ Across the 18 studies, an average of 46% of subjects showed improvements from high doses of B6.

Magnesium is recommended with high doses of B6 in order to minimize any side effects, such as irritability, bed-wetting, or sensitivity to sound. Most Americans are deficient in magnesium, which is needed to utilize calcium in our bodies, and also helps to maintain nerve function. Kirkman Laboratories have developed a multivitamin called Super Nu-Thera, which is specifically designed for people with autism. It contains high doses of B6, magnesium, and many other nutrients. Dr. Rimland points out that high doses of B6 should not be taken alone, since this might induce a deficiency in magnesium and other B vitamins which may then cause tingling or numbness in the hands or feet. Super Nu-Thera takes these things into account in its formula, which comes in pill, powder, or liquid form.

After learning about the possible benefits of B6, we decided to try it with Ryan. At first we used the powder, but the taste was so strong that it was hard to hide and Ryan refused it. The liquid taste was very subtle, like weak Kool-Aid, but again Ryan refused it since he only likes to drink water. When he began to swallow pills, we tried again, this time with success.

When Ryan began taking the Super Nu-Thera, I didn't see any noticeable results, but since his diet was so limited, I was thrilled that he was getting some vitamins into his system. After several months, we decided to have Ryan's body chemistry tested so we could develop a nutritional supplement for him based on his needs. While we were waiting for the pills to be designed and made, we were running out of the Super Nu-Thera. About three weeks before they were completely gone, we began to wean him from them and eventually stopped. For the next two or three weeks Ryan was not on any vitamins. In that time his behaviors began to deteriorate. He became aggressive and more hyperactive. When our therapists asked if I knew why Ryan was behaving this way, I took a look at the chart where we log all the supplements that he takes. The therapists mentioned that Ryan's behaviors began to change about two weeks prior, which correlated with the time we withdrew the Super Nu-Thera. That really caught me by surprise, because I didn't think the vitamins were making an impact on him, but I ordered some more Super Nu-Thera. Within two days of resuming, Ryan's behaviors were back to normal.⁴

Since that time, Ryan has usually been on some form of B6 therapy. When we began giving him cod liver oil, as a form of vitamin A, we changed to a different product by Kirkman called Nu-Thera. Nu-Thera doesn't contain vitamins A or D, since they are found in the cod liver oil. Nu-Thera also contains the activated form of B6, called pyridoxal-5-phosphate (P-5-P), which is often more easily utilized by autistic children.

Recently I learned about another reason to use B6 for Ryan, this time in conjunction with zinc. A few months ago I had the privilege of sitting down with Dr. Woody McGinnis. During our conversation, I brought up some of the behavioral issues that still challenge Ryan. Though Ryan has overcome most of his autistic symptoms, he still struggles with his emotions—especially outbursts of anger or frustration. Ryan is a really sweet boy and is often polite and well mannered, but other times he can become very angry, very quickly, with minimal provocation.

When I mentioned this to Dr. McGinnis, he told me that I should check Ryan's pyrrole levels. I had never heard of pyrroles before, so he explained that they are toxins that can build up in our bodies. At this point, researchers are not sure about the origin or origins of these pyrroles. Typically these toxins are dealt with by our bodies and excreted through the urine. However, if a person is deficient in vitamin B6 or zinc, these pyrroles can build up and cause problems.

Taking this to heart, we had Ryan's urinary pyrroles tested. With a reference range of 0-20, Ryan tested at 481! No wonder Ryan was having outbursts—his toxins were sky high! (Any number above the reference range is considered high and worth treating; Ryan's was unusually high.)

That day we began to treat Ryan with even higher levels of B6. Before the testing, we were giving him B6 once a day. Now we decided to increase it to twice a day. As for zinc, he was getting a little bit of it in his Nu-Thera pills, but we were unable to give it to him separately, so he wasn't getting very much. When we tried to give it to him separately from other supplements, before bed, he would develop a severe headache and vomit. Even though we tried several zinc products, he had the same reaction. Then we learned about zinc picolinate, which was said to have fewer side effects than the other forms of zinc. This time we had no negative side effects, so we added some zinc to our daily regimen of supplements. We also added manganese to our morning routine to help balance the zinc.

To our amazement, these supplements seemed to help right away. The day after we began, Ryan started to get some wonderful reports from school. Ryan seemed to be more in control of himself and his emotions. This happened day after day. At home, we definitely saw a difference. One day, we gave Ryan his B6 early in the morning. For a while, he was OK. Later that day, he went out to play with his sister and some neighborhood kids. Ryan had a remote control car that he got for Christmas and he was anxious to show it to everyone. Once he was outside though, he became agitated. He wouldn't share his car with the others, and he began to cry and scream. He was convinced that the other kids were going to steal his car and break it. Aware that these were good kids, I knew that Ryan was thinking and acting irrationally, so I had him come in. At that point I remembered that it had been a while since Ryan had some B6, so I gave him a dose. Within a short time, to my absolute astonishment, Ryan's whole demeanor changed. He calmed down emotionally and his body became more relaxed. He said he wanted to play with the kids again, so out he went. This time, he offered to share his car and he interacted wonderfully! It was a night-and-day difference.

Due to this incident, and others like it, we decided that Ryan probably needed more than two doses a day of the B6. We started giving him three doses: one in the morning, one at lunch and one right after school. This way he was more consistent and was not demonstrating the ups and downs of being “on” and “off” B6. We also found that if we raised his zinc levels as well, he responded favorably.

Although B6 and zinc are very safe vitamins, we have tested Ryan to make sure we are giving him appropriate doses and we plan on continuing the testing every few months. We're still in the process of figuring out what Ryan's optimal dosages are for both zinc and B6. Since pyrroles can be volatile, his needs for these vitamins may change on a daily basis. When he is more stressed out, physically or emotionally, he may need more. Other days, he may need less. I'm hoping that over time, with much trial and error, we will be able to “read” Ryan and know how to help him appropriately with these supplements.

Vitamin B6, magnesium, and zinc are only a few of the things we have learned about from Dr. Rimland and the Autism Research Institute. Many of the biomedical interventions that we have used with Ryan I have learned about from the Defeat Autism Now! Protocol, from attending Defeat Autism Now! conferences, or from the Autism Research Review International newsletter.

Over the past seven years we have used various and often diverse therapies. These have included intensive ABA, the GFCF diet, numerous supplements (including B6 and magnesium, DMG, TMG, cod liver oil, multivitamins, essential fatty acids, amino acids, and others), mercury chelation, sensory integration, occupational therapy, speech therapy, auditory integration, treating a yeast overgrowth in the gut, antigen-specific transfer factors, secretin, and more.

I believe that each of these treatments played a role in our son's recovery. True, some were more significant than others, but each had its place and its time. I have learned that autism truly is a multifaceted disorder and each facet must be addressed in its own way. What treatment brought our son back? I don't know for sure.

What I do know is this: We once had a child who was locked in his own world; now we enjoy life together. We once had a child whose IQ was 53 and who wasn't learning. Now we have a son who has an IQ of 109 and is learning at grade level. We once had a little boy who couldn't speak. Now we have a young man who hugs us and says, “I love you, Mom. I love you, Dad.” We once had a son with a very dim prognosis, who we thought would need constant supervision all his life. Now we have a son with a bright future who wants to save endangered animals as a zookeeper.

There is hope!

References

¹ Hamilton, Lynn M., adapted from Facing Autism: Giving Parents
Reasons for Hope and Guidance for Help (Colorado: WaterBrook Press,
2000), 81.

² Hamilton, Adapted from Facing Autism, 116-118.

³ Rimland, Bernard, Ph.D., Baker, Sidney M, M.D. “Brief Report: Alternative Approaches to the Development of Effective Treatments for Autism,” Journal of Autism and Developmental Disorders 26, no. 2 (1996): 238.

⁴ Hamilton, Adapted from Facing Autism, 163-164.

Update for Second Edition (November 2005):

Two years have passed since I shared our story in this book, and the biggest change is that our boy is becoming a man. Yes, our “baby” is growing up. He is only 13 years old, but his body has now changed and we've hit puberty. Ryan is now as tall as his Dad, with a deep voice to match. Where, oh where, did my little boy go?

Ryan constantly amazes us. We've had our rough spots, as anyone with a teenager will tell you, but Ryan is still developing daily and doing really well. He still has a love for animals, and hopes to work in a zoo. By the grace of God, the future becomes brighter for Ryan with each passing year. For that, we are very thankful.