Our story began in a manner that seems fairly typical for most families with autistic children. Our oldest child, Amanda (name changed to protect her identity) was born in 1990, perfect and beautiful. She developed normally for the first year and a half of her life, hitting all of her developmental milestones perfectly.
At her two year check-up I confidently reported that Amanda was using about 25 words. The pediatrician gave me a concerned look and said that she should be using 100 – 200 words. Speech therapy and an appointment with a pediatric neurologist were suggested. I was stunned. That day abruptly began our journey into the world of autism – although we would not hear that word for more than a year.
More Questions Than Answers
Over the next year, I took Amanda to speech therapy twice a week but my anxiety mounted as she continued to lose words, eventually becoming mute.
Our visit to the “best pediatric neurologist in New York City” was extremely frustrating and left us with more questions than answers. The doctor took Amanda through a battery of developmental tests to gauge her language, cognitive skills and behavior. The he wrote scripts for blood work, a chromosome analysis, a EEG and brain CT scan.
I felt awful holding down my daughter during the testing process so someone could poke, prod and inflict pain on my sweet, wonderful child. As she was prepped to be put to sleep for the EEG, I was instructed to restrain her while clinicians inserted an IV. It was too much for me to take - I passed out across Amanda’s little body. I reached a new low point.
All of the testing yielded no abnormal results and the neurologist rendered a diagnosis: static encephalopathy of pre-natal origin. That’s absurd, I remembered thinking. Clearly she had normal development following birth. A video of Amanda on her first birthday shows her smiling, laughing, responding, using words, engaged in the activities around her and making eye contact with the cameras. She lost these abilities later. How could it be either pre-natal or static? I couldn’t accept that what was happening before she was born.
I didn’t share this opinion with the doctor but asked, “What about her future?” He became somber. “You need to consider that she is at very high risk for a learning disability,” he said. Then I asked the question I had been dreading: “Will she need to be institutionalized?” His solemn look never wavered. “There is a real possibility she could be institutionalized.’ he answered. I went numb. “There must be something we can do to help her. What can we do to try and reverse this?” I implored. “You can continue on with speech therapy and maybe add occupational therapy and perhaps some physical therapy. But…” he said, shaking his head, “I wouldn’t expect that she will improve much beyond where she is now.”
One word dominated my thoughts: NO! Even before I left the office, my mind was screaming: “You do NOT give our child a lifelong diagnosis and then say there is nothing that can be done.” Devastated, I told my husband everything the doctor said. He winced at the word “institutionalized” and looked wistfully and sadly at our beautiful daughter.
But I was not ready to give up and became determined to find out what this thing really was and get it treated.
Determination and Disappointment
The next few months were filled with more discouraging events. One day at speech therapy, I heard the therapist encourage Amanda to name the item that she was being shown. When Amanda didn’t respond, therapist would say “Big Bird. Say Big Bird.” Silence. Each time the response didn’t come, the therapist’s voice became louder and more insistent. “Big Bird, say Big Bird” until Amanda began to cry. Appalled, I jumped up and ran into the room, insisting that I say. Reluctant to have me in the room, the therapist continued with her chant, “Big Bird. Say Big Bird.” To my horror, Amanda began to bite the back of her hand. “Big Bird. Say Big Bird,” she continued. Amanda bit her hand harder through new tears for the next half an hour. She did not say anything during that visit and at the end the therapist said “See you next week!” in a matter-of-fact voice. I felt stunned, angry and violated when people I entrusted to the care of my child would treat her poorly then treat me with distain for being upset as if they were professionals and knew better than I.
This was in the early days of autism diagnosis and we were all floundering - trying to figure out what to do and how to get through to these kids. What we found out time and time again was that Amanda was taking everything in but not able to express herself. No child deserves to be felt belittled, humiliated, threatened or unimportant if they do not have the ability to communicate.
Around this time, I took Amanda to the school district for an evaluation and at three and a half she began an early intervention program at a public school a few towns away. One day I visited the school and saw Amanda playing in shaving cream with other students then listening to music. I wondered how this was helping Amanda and my fears were confirmed when she continued to decline during the six months she was in the program.
Searching for Information
In 1993, information was not as easy as clicking a mouse. I found myself standing in the middle of the local library one day searching for answers with no idea of where to begin and pleading “God, help me. Help me figure this out.” Almost immediately, my attention was drawn to a shelf where one book stood out. I took the book down and began flipping through it. It was a book on Orthomolecular Medicine, the practice of preventing and treating disease by providing the body with optimal amounts of natural substances. I read that book cover to cover learning about case after case of individuals presenting with nebulous and progressively worsening symptoms that mostly affected the nervous system. I found that the Princeton Bio Center, practicing the tenants of orthomolecular medicine, was only an hour from our home. Soon we were in the office of Dr. James Neubrander, a kind and gentle man. Dr. Neubrander spoke directly to Amanda even though she didn’t talk back, showing compassion for Amanda that we had rarely seen from professionals up to this point. He suggested a series of blood tests that might be revealing to what was causing Amanda’s condition.
A nutrient mineral analysis revealed she was extremely low in zinc and high in copper with very low histamine levels. She was also high in lead and “off the charts” high in aluminum. These results were consistent with patients who had neurological delays. Remarkably, these same methods are the cornerstones of biomedical testing that are used to evaluate autistics today. Given these results, Dr. Neubrander put Amanda on a vitamin regimen that included lots of Vitamin C, B12, folic acid, niacinamide, magnesium, zinc and a substance called DMG.
The “Autism” Word
By May of 2003, Amanda was spending a couple of afternoons a week at a local day care center to foster social skills. The first several weeks were awful. Amanda cried for nearly an hour after she was dropped off. Soon she cried less, but never engaged with the other children and rarely smiled. One afternoon I got a call from a very excited Director of the day care center telling me that Amanda had a “remarkable” day. She didn’t cry, she smiled and engaged in the classroom activities. Both the Director and I were very encouraged. The intervention with nutrient therapy seemed to be working.
A few months later, our small family took a vacation to Florida. As we were sitting around the swimming pool, a stranger approached me and said that Amanda reminded her a friend’s son. She said the boy didn’t speak much and seemed to be in his own world. She said her friend had found some methods to help her son and felt quite sure her friend would be happy to speak to me about Amanda. A few days later I spoke to the friend and described Amanda’s symptoms. She said flatly, “Your daughter has autism, but there is help”. Somehow, despite the verdict, the fact that it came with a potential solution seemed to lessen the terrible impact it could have had. This woman told me that her son had begun a program called Applied Behavior Analysis (ABA) by Dr. Ivar Lovaas at UCLA and they were already starting to see good results. She also told me to read a recently published book called “Let Me Hear Your Voice” by Catherine Maurice.
As I read this wonderful book, I marveled at how much the two children of Catherine Maurice resembled Amanda with gradual downward spirals, crying, miserable behavior and struggles. But with it came a promising treatment method, ABA, which was described in detail and which both of her autistic children responded to beautifully. “I can do this,” I thought. Because the method was so new, I made dozens of phone calls without finding anyone in my area who could implement the necessary programs. I was so moved by Catherine Maurice’s book that I decided to dash off a note of appreciation and ask if she knew of anyone who could help with ABA. I was astonished to receive a call from Catherine Maurice herself a few weeks later! After nearly dropping the phone in disbelief and several minutes of babbling about how much I appreciated her book, she told me that one of Dr. Lovaas’ graduate students mentioned in the book, Dr. Doreen Granpeesheh, a PhD herself, would be in New York City the next few weeks.
The next few weeks were filled with a whirlwind of activity and I found two brilliant and hard-working women, education majors at the top of their class at a nearby college, to administer Amanda’s programs once they were set up. A friend graciously loaned her apartment in New York City where we could meet with Dr Granpeesheh and film her demonstrating programs with Amanda. We loaded up our van with people and equipment and met Doreen in the city. Doreen is gentle yet firm, sweet but determined. She could make Amanda giggle and follow instructions. In one afternoon Doreen demonstrated dozens of programs for Amanda and took turns with our student teachers demonstrating on film how they worked.
Back at home, we immediately implemented ABA. Our student teachers came three afternoons weekly for two hour program sessions. Amanda didn’t seem to mind all the work and liked the attention. In a short amount of time, Amanda was saying words again. Then putting words together in two word sentences. Then longer sentences. She learned colors, then letters, then words and by the time she was four, she was reading.
One component of the program was to teach Amanda how to ask questions. An autistic typically doesn’t acknowledge others in the room, let alone ask them a question. So a program was written whereby Amanda took turns with the therapist picking up a card from a pile in front of them. Amanda would read: “How was your day?” To which the therapist replied in a whooping manner: “My day was great! Thanks for asking!” The look of shock, then realization on Amanda’s face was priceless. Next the therapist picked up a card and asked Amanda a question that she had to answer. She was learning not only how to ask questions, but why.
Progress Continues
I finally took my first deep breath. Amanda was finally making progress. But progress didn’t come from the plethora of doctors and other clinicians who used “conventional” tools to try to unlock Amanda’s condition. Progress came from strangers at a swimming pool who were brave enough to share their observations. Progress came from other parents who took bold steps to try and help their children. A decade later ABA would be a cornerstone of early intervention with autistic kids, but back when we were getting started, it was nearly unknown.
Amanda continued on a significant upward climb. She learned to speak fluently, her eye contact improved tremendously and she was interacting with both adults and children. She no longer bit the back of her hand. And she seemed content. She smiled much more frequently.
When Amanda was five years old, she began full-day kindergarten with an aide. I was relieved to see she fit in and did well. She would play with other kids, but she still didn’t initiate play and sometimes walked away from play situations. Her education proceeded for the next several years in a similar manner: she had great and understanding teachers, she was shadowed by an aide and she was keeping up with the school work. However, she didn’t have any true friends to speak of at school.
By age seven we had drifted away from both the ABA and nutrient therapy. From seven to nine, Amanda kept up in school but didn’t make any remarkable gains regarding her remaining autistic symptoms. Then one day, I was asked to join an autism biomedical study group. The group was informal, but used biomedical tools to evaluate the urine of kids with autism to see if there was anything unusual. There was. In fact, there was something quite shocking there.
This informal study used a “triple spray mass spectrometer” to analyze urine of autistic vs. non-autistic children. The head of the project explained that they were testing something called the opiod excess theory of autism. This theory postulated that morphine-like substances were being created by the bodies of autistic individuals from improperly digested proteins such as casein (the milk protein) and gluten (the wheat protein). These proteins leaked out of the gut, into the bloodstream and attacked the brain/nervous system, producing the symptoms of autism. (Please see the “Science of Autism” discussion for more information.) Within days of hearing about the study, I had collected and frozen Amanda’s urine on dry ice as well as the urine of my unaffected four-year-old son.
I delivered the samples to Bob, the wonderful person who carried out mass spec analysis. Thawed urine is loaded into the mass spec machine that “explodes” or breaks apart the contents into individual chemicals. The output is shown on a display screen as a series of peaks that correspond to each individual element. The associated molecular weight identifies the substance in question.
Amanda’s output revealed MANY peaks. Bob pointed out which peaks were caseomorphins. He also pointed out the peak he thought corresponded to gliadomorphins. I didn’t ask about the dozen or so other peaks that also appeared on the screen. Next Bob loaded my son’s urine into the mass spec – no one peak appeared. The evidence was striking. All I could think was “Holy crap – this is real.”
Other families joined the informal study group, which grew to about ten families with children diagnosed with autism. The same jaw dropping experience was repeated over and over – parents observed peaks galore in the urine samples of their autistic children and none in their non-affected children. As a parent stares in disbelief at the screen of the mass spec output, their next question is the same: “What can be done about this?” The answer: put the child on a casein-free and gluten-free diet to see if it affects their peaks and their autistic symptoms. My husband and I agreed to take on the daunting task and readied our household for this adventure.
Diet Dilemmas
We decided to eliminate dairy first, as this was all we thought Amanda could handle. I went to the health food store and bought a sampling of just about everything labeled “non-dairy” so Amanda could try it and see what she liked. I ordered a case of powdered rice milk. We pulled out everything from our cupboards that had any trace of dairy in it and began to carefully read labels. Thanks to Tofutti Cuties and Rice Dream the diet was tolerable. We began to watch for changes in symptoms but found nothing significant. Her caseomorphine peaks began to decline, then disappear on the mass spec screen. After about ten weeks of a casein free diet with no changes in her autistic symptoms, we pulled gluten from her diet. Back to the health food store to read more labels and discover that gluten appeared to be in EVERYTHING! Almost all of the cereals and breads that were gluten free tasted, well, yucky. We sent her to school with strict orders not to eat anything except what was in her lunch bag. Most of it came back uneaten. For her birthday, I made her a gluten-free, dairy-free cake. It looked beautiful yet had some of the funkiest ingredients I’d ever encountered. Amanda’s eyes widened in anticipation. However, once she took a bite, she pushed the rest of the piece of cake away. It tasted awful and I felt terrible. Amanda was being such a trooper throughout this whole diet experiment and now I had wrecked her birthday cake. I understand that now there are a tremendous number of products available that are dairy free and gluten free and actually taste good. Here again we seemed to be on the front end of a wave where there weren’t a lot of alternatives.
About 18 months after the urine testing started, I heard from a father of a child in the study group who reported that his son was fully recovered thanks to removal of only dairy from his son’s diet. The child was two years old when he started the diet, and the father said it took a full 18 months (in addition to ABA and other therapies) to achieve “recovery”. It was the only full recovery from that study group. But it was a full recovery.
About the same time, I had the opportunity to meet the son of Karyn Serrousi, author of “Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery”. It was absolutely breathtaking to see a child achieve full recovery. He was brilliant and beautiful and without a trace of autism.
And our child? Only slight improvement in her autism symptoms despite being on a CFGF diet for over six months. Most of the other children in our study group had nearly the same results. Discouraged, I went back to see Bob again with another sample of Amanda’s urine. “What do you think happened? Why did some kids respond and others don’t?” Just then he popped up the mass spec output. The caseomorphin peaks had disappeared. But all the other peaks that seemed to appear on the first mass spec were still there. “What are those, Bob? Could these be peaks to everything else she eats?” Bob explained that some substances such as casein and gluten and soy were similar so that it was plausible that the body would begin to create morphine-like substances out of soy (which we had used to replace milk in Amanda’s diet). I could quickly speculate that in an older child that had been exposed to a variety of food for nearly a decade of her life with a compromised detox, immune and digestive systems could possibly be making morphine-like substances to a variety of things she ate.
Based on this information, we decided to terminate Amanda’s CFGF diet. Well, I thought, at least Amanda can eat M&M’s again. And ice cream. And real cereal with real milk. It was some solace in this long experiment.
But I hadn’t dismissed the idea that some day something could be done for Amanda. On several occasions, we had seen Amanda have “lifts” – episodes of increased clarity, improved behavior, decreased frustration and increased happiness. Those episodes sometimes followed vitamin therapy, ABA and Tomatis hearing desensitization (which we had done a few years prior). I knew from seeing her “peaks” that something terribly wrong was going on with her digestive system and her brain was being attacked by neurotoxins every day. But I just didn’t know how to stop the production of neurotoxins.
More Treatment, More Recovery
Our next journey towards recovery was to the Pheiffer Treatment Center outside of Chicago in 2001 for customized nutrient therapy along with an anti-fungal treatment. Again we saw a “lift” similar to when she began treatment at Princeton Bio Center. After she had stabilized on the nutrients, she started a “gentle detox” with transdermal glutathione (delivered through a patch on her forearm at night) that had a definitive impact – Amanda’s eye contact was better, school work seemed easier and she appeared to be overall “better.”
Despite Amanda’s gains on the biological front, she was struggling to fit in at school. At this point, Amanda had finished the fifth grade in a fairly large public school. Academically she was doing ok, but on the playground she almost always stood by herself. I’m sure there were efforts to include Amanda in activities by some of the kids. However, as Amanda and her peers approached middle school there was less tolerance for a child who had to be purposefully included in activities and who didn’t always grasp subtle social cues.
During that year of fifth grade, we began to explore alternatives that would give Amanda some relief from social pressure. As our meetings with the special services department of our school district became more frequent, it became apparent that the district was feeling the burden of a significantly increased case load. No longer was Amanda one of the few special education cases that were being addressed by the district. There was a quickly expanding number of children in the system. It appeared as if Amanda was at the beginning of a tidal wave of children in our town who needed special education.
In the fall of 2001, we enrolled Amanda into “slightly” special ed school about a half hour from our home. Amanda loved it there as she could finally relax and be herself and make friends. Amanda’s middle school years passed quickly and soon it was time to look for a suitable high school. As part of the vetting process, we returned to our local high school to investigate its capabilities. Our special services director assured us that the high school was completely capable of handling Amanda’s needs. However, when I took a tour and interviewed the staff who would be responsible for Amanda’s education, I learned that Amanda would spend most of her time in a resource room with few expectations for homework, testing and future achievement. When I spoke to the social worker at the high school and reviewed Amanda’s special issues (the cafeteria noise level would likely be very difficult due to her hypersensitive hearing) she said they had never dealt with an autistic high schooler before.
After some acrimonious debate with our school district, Amanda was enrolled in a special ed high school. It was the closest thing to a typical high school experience we could find – with sports programs, lockers, typical high school subjects, a prom and an expectation or at least possibility of attending college. The move to high school proved challenging at first. The content of her text books jumped to new levels, and we found she struggled to comprehend a paragraph rich in detail. As a result, we had her tested by Lindamood Bell reading program. The testing revealed that she was nearly completely void in her ability to make pictures in her head as she read – a key element to remembering and comprehending information. She immediately began the Lindamood Bell program and her reading began to improve.
“Mom, I just want to feel better”
I had been in touch with the Pheiffer Treatment Center every six months to make sure I was current on the latest treatments for autistics. I first heard about dramatic turnarounds with MB-12 shots around the time Amanda began high school.
The doctor who had made the key discoveries regarding MB-12 was none other than Dr. Neubrander, Amanda’s very first autism doctor! Within a few weeks, Amanda was back in Dr. Neubrander’s office. When Amanda was told that a possibly painful shot was involved, her words were clear and moving: “Mom, I just want to feel better.”
We gave her a shot every three days (which, by the way, were and are painless, thanks to “numbing cream”). We had been told by Dr. Neubrander it would likely take about five to six weeks to see even the faintest evidence of response but I was astounded by what I quickly heard. “She’s been so cooperative and sharp over the last few weeks,” said her Lindamood Bell Instructor. “She’s been so nice,” said her nine year old brother and seven year old sister. Whoa, that’s significant, I thought.
But the real evidence came from Amanda herself. She was a freshman in high school and had been struggling with a science class. The material was a big step up from what she was used to, the teacher spoke with a thick accent and didn’t use any manipulatives in the teaching process. Despite a lot of work on both our parts to study hard for tests and quizzes, Amanda was barely squeaking by. Five weeks after she started the shots, she aced her first science test. She called me from the car on her way home the day she got the test back. “Mom, do you think it was the shots?” she asked. “You tell me.” I replied.
Thus began a long, slow upward climb that continues to this day. I noticed gains in virtually every area of her life: eye contact, socialization, cognitive skills, sleep patterns, abstract thinking, motivation, and the big one: Happiness. She just feels better about herself. She struggles less, understands more, fits in better, is accomplishing goals and is inching her way towards a normal life, which she craves. Always a good student, she took pride in her continued good grades. She played three sports each year, and while she wasn’t necessarily the star player, she did receive recognition for her effort, sportsmanship and improvement.
College for Amanda
By the Spring of her Junior year in high school, we were investigating colleges. In addition to the usual nervousness I felt at the idea of my sweet, amazing daughter leaving home, I felt the added anxiety of not knowing if this child could survive in college. She would need to take another big step up academically, socially and in environment without nearly as much structure as she had in high school. While her social skills were vastly improved, I knew she would still rather crawl under a table rather than ask someone for help if she was having trouble in a class.
Fortunately, we were directed to colleges that have programs designed specifically for students who need this type of help. We investigated several colleges on the East Coast and Amanda received admission and a scholarship at each one she applied to. We are all very happy with her selection and she began school in the Fall of 2008. Amanda has adjusted well and is enjoying the ebb and flow of college life. She has investigated social clubs, but hasn’t found one she feels totally motivated to join. She has found a few friends, but wishes she had many more.
In addition to the experience of college, Amanda has had other significant “typical” experiences as well. During her Junior year in high school she began dating a wonderful young man. They have been dating two years and are still going strong.
Never Give Up Hope!
So, you might ask, is Amanda cured? Is she typical? Is she indistinguishable from her peers? My answer is that she is 90-95% recovered. She has very good cognitive abilities, eye contact and fairly good social skills. However, she is somewhat hesitant to engage in conversation with someone she doesn’t know. On occasion she can be slow to respond to a question or request. (When asked about why she hesitated, she replies that she was thinking about her answer.) She gets frustrated somewhat easily and she takes her defeats hard.
The real reason that I and perhaps most parents choose to conceal the identity of their recovered or near recovered kids is so that they won’t be “picked apart”. It’s easy to examine the behavior and mannerisms of a child and find flaws. This is not what any of us want for our children, especially those who have struggled so long and hard for their gains. If Amanda chooses to “go public” with her story, it is her decision, not mine.
In any case, Amanda is a miracle child, now adult. We all hope this story encourages parents of autistic kids to never give up hope! There are answers.