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, “Let’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, “I 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, “I 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 “white 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 “like 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 “expressionless 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 “toxic”, 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 any way 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 “normal” 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, “He’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 “high 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, “I 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.