Johnny and Nate
Johnny was born in 1997, a year when the word autism was just beginning to make its way into the mainstream media. Johnny was born two weeks early to excited and loving parents, Sarah* and Matt*. Right after Johnny received his hepatitis B vaccine in the hospital, he stopped breathing. Luckily, Johnny recovered from this incident, and after several days in the neonatal intensive care unit, he went home with his parents. Sarah knew right away that something wasn€™t right with her son. He never made eye contact, he had chronic acid reflux and would often vomit after nursing. He cried a lot during the first year of his life and always had explosive diarrhea. Sarah took her concerns about her son€™s physical symptoms and his inability to connect with people to her pediatrician, but because he was gaining weight and hitting certain milestones, her doctor told her not to worry and that he was fine.
There were other signs that something was amiss with Johnny: he didn€™t like being held or cuddled; he had eczema on his cheeks; he looked pale and sickly and his hair grew in sparse patches. Although he sat up at seven months, crawled by eight months, and walked at twelve months, Sarah knew that he was not like other kids. He had behaviors that were unusual. He would repeatedly flip pages in a book, or constantly slam doors. Sarah knew at twelve months that her son had autism, but her doctors still said, €œLet€™s wait and see.€ Because Sarah was persistent in finding out what was wrong with Johnny, she finally got a diagnosis of PDD-NOS (pervasive developmental disorder, not otherwise specified), a sub-category of autism, by the time he was eighteen months old. Highly respected doctors at Cornell University told Sarah and Matt, €œI just want to prepare you, your child may never talk.€ Sarah and Matt were devastated, and secretly, Sarah mourned the life of her son on that very day. It was this same day, however, that this dedicated and tenacious mother also said, €œI am not going to accept this!€ Thus began the journey into her son€™s recovery.
Johnny was a very sick toddler; he had chronic ear infections, and by the time he was two years old he had received nearly twenty courses of antibiotics. He just seemed to get sicker and sicker. He had constant post-nasal drip that caused a chronic cough and he was eventually diagnosed with asthma. He also had multiple food allergies and was diagnosed with diabetes at two-and-a-half years old. He mostly ate a €œwhite foods€ diet, consisting of milk and starches, that is, until Sarah learned about the gluten-free/casein-free diet (GF/CF). Sometime after his second birthday, Sarah began Johnny on the GF/CF diet. Within the first month of the diet he started to talk. He was completely non-verbal prior to the diet, but when he spoke his first words, it came in the form of a 10-word sentence copied from a familiar book. Sarah felt €œlike a fog was lifting.€ The GF/CF diet seemed to benefit Johnny, but he still had severe eczema, wet stools, chronic diaper rash, and other signs of biological impairment. She took him off of soy, and his eczema cleared up, his asthma went away, and his hair started growing in.
It was at this point that Sarah found out about a pediatrician, Dr. Nancy O€™Hara, who specializes in treating children with autism through a biomedical (as opposed to therapy-based) approach. Dr. O€™Hara is a Defeat Autism Now! doctor, part of the national coalition of clinicians trained to treat autism using a biomedical approach. Sarah immediately took Johnny to see her. Dr. O€™Hara ran a number of laboratory tests on Johnny to get a better picture of his many underlying biological problems. The tests revealed that Johnny had severe gut dysbiosis, significant food allergies and sensitivities, and many signs of immune dysregulation. Dr. O€™Hara began to address these issues one at a time, hoping to help heal some of Johnny€™s many dysfunctions.
Several months after Johnny was diagnosed with autism, Sarah gave birth to her second son, Nate. Like his brother before him, Nate showed early signs that something was not right. Sarah describes him as an €œexpressionless baby.€ He did not cry, he did not interact; he would just sit and do nothing. By the time he was eight months old, he had flipped to the opposite extreme and would constantly scream and cry, especially when Sarah took him out of the house or around strangers. Nate began to show more classic signs of autism as he got older, like sideways glancing, spinning car wheels and fixating on moving objects like ceiling fans. He also began to show a variety of bizarre behaviors like flipping his eyelids over, and biting the heads off of dolls. He demonstrated significant sensory-seeking behaviors like dragging his head on the carpet or twisting his body into contorted shapes. Sarah knew that she had a second child with autism. Consequently, Sarah sought early intervention services from the state when Nate was only thirteen months old. He was officially diagnosed with PDD-NOS by the physicians at Yale at twenty-two months old.
Because she began the autism biomedical healing journey for both Johnny and Nate at the same time, Nate received many interventions much earlier in his development than Johnny. Nate never ate gluten or casein. Johnny and Nate were both taken off of foods to which they were sensitive or allergic and began a diet known as the Specific Carbohydrate Diet (SCD) developed by Elaine Gottschall. The SCD emphasizes eating specific types of carbohydrates such as vegetables rather than grain-based foods like pastas or breads. Sarah also focused on feeding her boys nourishing, organic foods and removed any known toxins from their environment.
When Johnny was four years old and Nate two, Sarah took them to see a homotoxicologist, a practitioner who uses homeopathy to help the body remove toxic and pathogenic influences. In fact, the entire family saw this same practitioner and began treatments aimed at detoxifying the body. Sarah learned that her own body was considered €œtoxic,€ and stool tests confirmed that she had significant gut dysbiosis. Sarah also had a lot of mercury dental amalgams, which she believes may have contributed to Johnny and Nate€™s total toxic load. Around the same time that the family began work on detoxification, Dr. O€™Hara performed heavy metal tests and found that Johnny, in particular, had high levels of antimony in his body. Antimony is an element used to make children€™s sleepwear, toys, mattresses (among other products) flame-retardant. Antimony can be quite toxic if a child€™s detoxification pathways are in anyway impaired, as was the case with Johnny, a boy with significant gut dysbiosis and immune irregularities.
The next intervention that Sarah tried with her boys was aimed at addressing food and environmental allergies and sensitivities with BioSET. When Johnny and Nate began BioSET, they each had many food allergies and sensitivities. One treatment at a time, these allergies and sensitivities were eliminated, and after a few months, the boys could eat foods that once gave them horrible eczema, diarrhea or other symptoms. BioSET cured them of their food allergies.
Johnny made slow but notable improvements over time, but Sarah saw more significant improvements with Nate. Nate was never as outwardly physically sick as Johnny, but manifested the same intensity of behavior issues. Both boys received therapies like Applied Behavior Analysis (ABA), a comprehensive therapeutic intervention that uses a structured environment to help children learn to modify their behaviors. Sarah believes that ABA was tremendously helpful for both of her boys. The boys continued to follow a healthful diet, free of sugars and processed foods; they took vitamins and other supplements like cod liver oil, folic acid, and probiotics; they continued with behavioral therapies and interventions. Johnny and Nate received many interventions, and the journey was long for Sarah and Matt€™s family, but no one would dispute that the outcome was well worth the effort.
Nate€™s autism diagnosis was removed at 4 ½ years old. Although he was diagnosed with autism before his second birthday, he entered kindergarten as a €œnormal€ boy, and is now a fully-recovered, happy, healthy and thriving nine-year-old. He plays football and baseball, has many great friends, and goes to birthday parties all the time. He is very smart and does well in school, particularly in math. Very few people outside of Sarah and Matt€™s family know that Nate ever had autism. As Sarah says, €œHe€™s amazing!€
Like his younger brother Nate, Johnny€™s life has been dramatically changed by the many biomedical and behavioral interventions that he has received over his lifetime. Johnny, now eleven-years-old, is not fully recovered yet, but is considered to have €œhigh functioning autism,€ a term applied to individuals who can function quite normally in many respects but may retain particular traits of autism. Johnny is extremely verbal and is very smart but does have some difficulty with processing speed in school work. He still receives support services in school. He has friends and loves playing computer games online. Many of the physical and neurological problems that plagued Johnny as a young boy are now gone. Johnny was a toe walker and a constant hand-flapper; he had limited speech, significant social and sensory impairments as well as chronic illnesses like ear infections, chronic diarrhea, eczema, asthma and other physical ailments. All of these symptoms are gone. Most people who meet Johnny have no idea how severe his autism was. Rather, many see him a boy who struggles with learning disabilities and social impairments. He is a friendly, loving, happy boy still in the process of recovery. At a minimum he will be able to live independently, a dream Sarah never thought possible when he was first diagnosed.
In reflecting on Johnny€™s recovery, Sarah says, €œI never pictured that he would be where he is right now. He is able to do everything for himself, and he constantly wants me to show him how to do more.€ Johnny€™s independence and development are far beyond any expectations that Sarah and Matt had for him on the day they were told that he would probably never speak. Nate€™s recovery is a testament to the fact that full recovery is possible and Johnny gets closer to this reality every day. Sarah and Matt are two dedicated parents who were not willing to accept autism as a life-long chronic disorder. Because of their commitment to healing and recovery, their boys can now live rich, full, and independent lives.
Upon meeting Leo for the first time, it is difficult to grasp that this friendly, bright-eyed 10 ½ year old boy once had autism. There is nothing about his demeanor, appearance, or behavior that would even suggest that he had any sort of impairment whatsoever. But he did. Leo was diagnosed with autism at two years old by the physicians and researchers at the Yale University Child Study Center. Although it took two years for Leo to get a formal diagnosis, his mother Ashley* knew very early on that something with her baby boy just wasn€™t right.
After a healthy and normal pregnancy Ashley delivered Leo via c-section. Leo was healthy at birth, with normal APGAR scores and all the signs of being a thriving baby. Ashley began to notice the first signs of something being €œoff€ with Leo around two months of age; Leo would tremor slightly after nursing. Ashley and her husband took Leo to see a neurologist at the prestigious Mt. Sinai Hospital in New York City, where they were told that the tremors were probably nothing and not to be concerned. Around four months of age, Leo developed severe separation anxiety. €œMy instinct told me that this was not normal,€ Ashley recounts, €œit was so severe that it just seemed €˜off€™ to me.€ Despite these early signs, Leo met all of his major development milestones during his first year of life. He rolled over, sat up, crawled and walked€”all on time€”so Leo€™s pediatrician did not seem to be concerned that Leo had little to no real verbalization, no babbling or other signs of pre-language. Ashley began to suspect that her son might have autism after he reached a plateau in development during his second year of life.
Between his first and second year, Leo began to show more signs of autism. He began €œstimming€ on the wheels of vehicles (obsessively fixating on wheels), he was not developing any speech, and he seemed to be in a €œfog€ all the time. Ashley had him evaluated by the state early intervention program where he qualified for speech therapy. After much persistence, Ashley got Leo into the Yale€™s Child Study Center so that he could be evaluated by top autism experts. At 24 months old, Yale confirmed that, indeed, Leo was autistic. He had many of the most common characteristics of autism: stimming behavior, social and communication impairments, sensory integration disorder, perseverance (obsessive behaviors), low frustration point, and he was physically unwell.
With the new diagnosis in hand, Ashley followed the advice of other mothers of autistic children and began Leo on the gluten-free/casein free diet (GF/CF). After only one week with no dairy or wheat, Leo began to talk. He went from no words to many two-word sentences, and Ashley describes it as if a €œfog lifted.€ To be sure, there was much recovery work ahead, but the GF/CF diet gave Ashley the confidence that improvement was possible.
After starting the GF/CF diet, Ashley took Leo to a Defeat Autism Now! doctor and a Defeat Autism Now! dietician who began to treat Leo€™s biological problems one-by-one. Leo had many food and environmental allergies, chronic diarrhea, and asthma. Under the advice of her Defeat Autism Now! practitioners, Ashley began to feed Leo a more healthful diet emphasizing organic whole foods and removing allergenic foods that caused inflammation in his body. Ashley felt that the Defeat Autism Now! protocol helped Leo to make incredible gains and that his physical well-being improved substantially. €œHis eyes, his skin tone, his face looked great.€ Only 6 months into the diet changes and biomedical protocol (Defeat Autism Now!), Leo tested age appropriate for speech. Progress was happening, but his recovery was not complete. Ashley is fond of saying that the biomedical treatment helped to €œturn the lights on€ in Leo, but it was focused behavioral therapy that corrected his social deficits.
While Leo€™s biomedical issues were being addressed by the Defeat Autism Now! protocol and diet and environment changes, Ashley began to work intensively on Leo€™s behavioral training, using techniques that were similar to ABA (Applied Behavioral Analysis). Leo continued to make steady gains from the behavioral therapy, so Ashley sought out highly skilled ABA practitioners to work with Leo. Ashley carefully studied these skilled practitioners as they worked with Leo, and she incorporated ABA into every aspect of their lives. In addition to biomedical and ABA, Leo also worked with a homotoxicologist to detoxify his body, and he saw a BioSET practitioner to address his food and environmental allergies. Ashley also learned homeopathy and used homeopathic remedies to help Leo heal. Ashley believes that biomedical interventions, homeopathy, and energy healing recovered Leo€™s body so that he could effectively respond to ABA. ABA addressed his social deficits and helped to €œrewire€ his brain so that he was able to learn and internalize appropriate behaviors. While ABA and Leo€™s biomedical treatments resulted in the most immediate and tangible gains, all of the therapies and lifestyle modifications likely played some role in Leo€™s recovery. Between the ages of 2 ½ and 5 ½ Leo made slow but steady gains, such that he no longer qualified for any special education services.
Before Leo started kindergarten, he officially lost his autism diagnosis. He entered kindergarten without any services or support, and no one, not even his teachers, knew that he was once diagnosed with autism. Today, Leo is a completely €œnormal€ and typical kid. He tests above-average on standardized testing and was re-evaluated by Yale researchers who determined that he no longer meets any of the diagnostic criteria for autism. He is very social, friendly, and outgoing. He plays baseball, is a good student, and is popular in school. Ashley knows that her healthy, thriving son would not be anywhere near where he is today had it not been for the many biomedical, healing, and behavioral interventions that he received over his first few years of life.
In fact, Ashley got a second chance to test out these interventions with her second child, Sydney, born just two years after Leo. Like her older brother, Sydney began to show some early signs of autism, including social deficits, sensory integration disorder, food allergies, and other signs of immune dysregulation. A lot more knowledgeable because of her experiences with Leo, Ashley immediately began interventions with Sydney as soon as she saw the familiar signs. Sydney was never vaccinated, she ate the same healthy, organic, whole foods diet as Leo, which included staying gluten-free and casein-free. Despite showing many early signs of autism, Sydney €œturned a corner€ toward the end of her first year, and never developed autism. Ashley feels that she saved Sydney from autism.
What caused Leo€™s autism? Ashley has given this question much thought over the years. Upon reflection, Ashley recalls a number of factors that may have put her son at a high risk for developing autism. These factors include:
Maternal history of chronic infections:
- Chronic Lyme–Ashley was diagnosed with chronic Lyme disease years after Leo recovered. Ashley often wonders if the chronic fatigue and chronic colds that she experienced throughout her young adult years might have actually been undiagnosed Lyme disease. It is now believed that Lyme and coinfectors can be transmitted across the placenta from mothers to their babies. Ashley believes that she may have transmitted the Lyme spirochete or Lyme coinfectors (such as babesia) onto her children.
- Ashley also carries HSV1, the virus responsible for cold sores. HSV1 and other herpes viruses have been found in autistic children in a state of chronic infection.
- Ashley admits that her family€™s diet, like that of most American families, was never very good before Leo was diagnosed with autism. As she recalls, €œT.V. dinners and McDonalds were staples,€ but she also grew up in coastal California, where seafood (high likelihood of contamination) was another staple.
Toxin and pesticide exposure:
- Ashley grew up in the San Joaquin Valley in California, an important agricultural region. She €œroutinely saw and smelled pesticide being sprayed€ while growing up. She remembers that the tap water that she drank everyday growing up had little €œflakes€ in it, and that it was heavily chlorinated.
- Ashley was frequently put on antibiotics during her college years to address minor illnesses, like colds or seasonal allergies.
- Ashley, like many thousands of women who deliver babies each year, tested positive for group B strep prior to delivery. Ashley was put on oral antibiotics prior to delivery. The oral antibiotics may have affected her gut flora and predisposed baby Leo to gut dysbiosis and subsequent immune dysregulation.
- Ashley and her husband also believe that their urban lifestyle (with easy access to processed, unhealthy foods, and exposure to many pollutants) may have in someway added to Leo€™s total toxic burden.
- Years of working in indoor corporate environments prior to Leo€™s birth may have exposed Ashley and her husband to electromagnetic pollution and indoor air pollution; their careers also keep them cloistered indoors, inhibiting their ability to spend time outdoors in a natural environment.
- In Ashley and her husband€™s family tree you will find a history of allergies and asthma€”all illnesses that may indicate some susceptibility to gut dysbiosis, immune dysregulation, or sensitivity to environmental factors.
All of these elements add up to a €œperfect storm€ of environmental and genetic factors that may have led to a diagnosis of autism for Leo.
Ashley is one of the most dedicated mothers you could ever meet. It was her dedication and love that pulled her children out of the unforgiving grip of autism. Recovering a child from autism is not easy, but it can be done. Ashley can also attest to the fact that it is easier to prevent autism in a susceptible child (as with her daughter, Sydney) than it is to recover a child from autism. Ashley recorded her autism recovery journey in an online blog, www.hiddenrecovery.com, so that other parents could benefit from the education she received from her son and his diagnosis. Ashley wants parents to know that there is hope, recovery is possible, and anything can be achieved with love and determination.
Sign up for our newsletter and find out why this epidemic of children’s chronic illnesses is occurring and what you can do about it.
This document is not a substitute for medical advice, treatment, diagnosis, or consultation with a medical professional. It is intended for general informational purposes only and should not be relied on to make determinations related to treatment of a medical condition. Epidemic Answers has not verified and does not guaranty the accuracy of the information provided in this document.