Autism in Past Tense: Recovered. Really.
June 03, 2013
By Holly Riley
Most people would say that recovery from autism is a miracle. I believe we create miracles every day, but miracles are a monumental undertaking which take time, patience, persistence, and love.
I am fortunate to live in two worlds, and more and more, I am finding that my two worlds are intersecting. At my core, I am the mother of a child affected by autism. We have spent over five years working every day to heal Quinn’s body and to help him catch up on the development that was hijacked by what I now know to be vaccine-induced illnesses. I live and breathe autism every day by continuing to research health and development. I apply what I learn in order to address Quinn’s lingering immune dysfunction. I see every interaction with him as a therapeutic opportunity, a chance to help him understand the complexities of social thinking.
And yet, most days, I move in another world. I am among the “typical” families. Quinn attends a parochial school with his older sister. We are active in our school and church community, and the families we spend most of our time with really have no understanding of the struggles we have faced or how hard we have worked to be able to join them in their daily activities. It is a miracle for Quinn to go to school every day. It is a miracle for us to be able to just play at the park after school.
When Quinn was a toddler, he was a runner. He would “elope” from any stimulating environment, especially the park. He’d be off running into the parking lot or street and never look back, so I kept him within arm’s reach at all times. Fortunately, he was so little that he was not able to escape from our home; however, I was petrified that he would find his way outside and to the swimming pool in our townhouse complex. Like so many kids on the autism spectrum, Quinn loves water. Accidental drowning is the number one cause of death among children with autism. Quinn was trying to escape because of his hypersensitivity to sound. He covered his ears for most of the day and cried at any loud noise, making everyday activities very difficult. Shortly after he turned one, Quinn started spinning. He spun everything! He turned over his dump truck to spin the wheels, he turned his sippy cup on its side and would spin it, and if he wasn’t strapped into the stroller, he would tip it over and spin the wheels. He didn’t bring us toys; he didn’t interact with us at all. He could spin things in the corner for hours. He was completely lost in his own world.
Throughout his infancy, Quinn grew at a healthy rate, but shortly after receiving his measles, mumps, and rubella (MMR) vaccine at twelve months of age, he suffered from eczema and ear infections. His diaper rash never seemed to disappear, regardless of how we treated it, and his stools were always loose. He had difficulty falling asleep at night and seemed to always have dark shadows under his eyes. He ate voraciously but failed to learn to feed himself, and his diet was self-restricted to cereal, wheat toast, fruit, and milk.
Quinn was diagnosed with mild/moderate autism when he was 25 months old. On the Childhood Autism Rating Scale (CARS), his score was a 36. According to the scoring standards of CARS, scores between 30 and 37 indicate mild to moderate autism and scores between 38 and 60 are characterized as severe autism. At that time he had no eye contact. He didn’t point or speak or communicate in any way. He had zero words and no receptive language. He didn’t even respond to his own name.
As we researched autism, we found some websites claiming that wheat and dairy could be contributing to the disorder. We read about vaccines and other environmental triggers. There were also many stories of children recovering from autism or improving significantly with medical treatment. As I read the testimonials on the Internet, I wept. Those tears were an overflowing of my hope for Quinn and all children and families with autism. I dared to dream of recovery for my son. I dared to believe that we could make a miracle happen. Then I rolled up my sleeves and got to work.
While initially I was skeptical about such a radical change to his diet, we decided that there was no harm in trying. We stopped cow’s milk and replaced it with rice milk. Taking Quinn off of milk made a huge difference within only a few days—it was like he came out of a fog. He was more social and engaging than he’d ever been. He seemed happier. He started bringing toys to us for the first time ever. I clung to the anchor of hope that other parents had given us, and our journey into biomedical interventions began. We then changed his diet to be gluten-free/casein-free (GFCF), and he continued to improve. We found an experienced Defeat Autism Now! (DAN!) doctor to help us. We eliminated foods that were reactive on a blood test for immunoglobulin G (IgG). After testing, we started a rotation diet and bought a bread machine. A rotation diet means that you eat any single food only once in four days which reduces the likelihood of an immune response to the food. I invented four different bread recipes that were not only GF/CF but also free of soy, potato, corn, egg, and all of his 30+ food sensitivities.
As we prepared to enter the public school system when Quinn turned three, his health had improved significantly. His diaper rash was finally better, he was sleeping well and eating a variety of foods on his GFCF diet. He had learned many skills, was potty trained and finally had spoken his first words during a speech therapy session. Despite this progress, his diagnosis of autism was verified by both an independent clinical psychologist, who gave him a score of 37 on the CARS, and the school district’s assessment team. We had seen steady but slow improvements, but Quinn was still very much affected by his autism. He had gained a handful of words, but he only scored in the 2nd percentile for his age in speech. The school speech therapist wrote a goal for his first Individualized Education Program (IEP) that he would acquire a vocabulary of 50 words by the time he turned four years old. We pushed for the goal to be rewritten for 100 words knowing that even that would be woefully inadequate if our son was ever going to catch up with his peers.
After a year of using homemade breads, his blood work still was indicative of significant gut issues, so we cut out all bread, starches, and sugars and started the Specific Carbohydrate Diet (SCD). The whole family went on the diet with excellent results. I learned to cook from scratch like my grandmothers had. Lingering problems with constipation and diarrhea finally disappeared. We were on SCD hard core for about six months and then gradually eased back into the GFCF diet because Quinn’s gut had healed enough to tolerate some starches. Our current diet includes select gluten-free starches in moderation.
For Quinn, traditional therapies helped a lot. The traditional therapies include applied behavioral analysis (ABA) using discrete trial training, then Natural Environment Teaching, which helped him generalize skills across a variety of typical childhood settings, speech therapy, occupational therapy, and a social skills group. Most recently, we have been using Relationship Development Intervention (RDI) to continue to support his social and communication development. These therapies have been intensive, totaling 30-45 hours per week during early intervention, and he has always had additional inclusive experiences with typical peers, including Music Together and dance classes. At age 2½, Quinn started attending a typical preschool with the support of his highly trained ABA therapists as his inclusion classroom aide.
Biomedical therapies have included vitamin, mineral, amino acid, essential fatty acid, and pro-biotic supplementation. We have used antiviral medication along with antifungal medications. We have treated bacterial infections in his gut, and we have used several different chelating agents and protocols to remove toxic metals. We saw huge gains in his speech with mild hyperbaric oxygen therapy (mHBOT), which we have done twice (that is, 40+ dives each round). Increasing the frequency of his methyl B-12 injections (now given daily) also helped his speech tremendously. We worked with a chiropractor to do Network Spinal Analysis, an alternative chiropractic therapy that involves very light touch, and Somato Respiratory Integration, a therapy that links your body’s awareness with movement, respiration, and touch. We have done several rounds of EnListen, a Tomatis-based listening therapy. We continue to supplement a very healthy, low-sugar diet and treat the ongoing gastrointestinal issues and immune dysfunction.
By the time Quinn was finishing preschool, we were able to fade the one-on-one support completely. The following September, I realized a dream I had only dared to imagine a million times before: I watched Quinn start his first day of kindergarten in a private Catholic school without an aide. At the end of kindergarten during his triennial IEP, Quinn scored in the 93rd percentile for his age in speech. In first grade, on the Iowa Test of Basic Skills, Quinn’s core total score was in the 79th percentile, and on the language subtest he scored in the 98th percentile. The test report read, “Language seems to be an area of relative strength for Quinn.”
Is my son recovered from autism? Quinn has many friends including his mutually-declared best friend. He enjoys school (but doesn’t like homework), participates in Cub Scouts and competes on the city and school swim teams. He loves video games and books. To the untrained eye, he is indistinguishable from his peers as they romp and play at the park. So, is my son recovered from autism? Would a typical mother ever think that her work was done? There are far too many unanswered questions.
I am fortunate to move in both of my worlds, and I expect to be entrenched in both of them indefinitely as they gradually blend together. I see miracles happen every day. And I relish every one of them.
Editors note: Holly is a long time TACA volunteer and the co-coordinator for TACA Los Angeles/Valley Chapter. We appreciate her efforts and for sharing Quinn’s story. We also thank the lovely Fiona for her sisterly love.