April is National Autism Awareness month. Before this month concluded, I wanted to open some dialogue surrounding the autism conversation. Autism Spectrum Disorder is a developmental condition characterized by difficulty in communicating and forming relationships with others, as well as difficulty in using language and understanding abstract concepts. As mentioned in its name, Autism Spectrum Disorder manifests in a variety of different ways along a “spectrum.” This means that there is wide variation in the challenges and strengths possessed by each individual with autism.
Autism is usually diagnosed between 2 and 3 years of age. However, in some cases it can be diagnosed as early as 18 months or as late as elementary school. The CDC estimates that autism affects 1 in 68 children in the U.S. (1 in 42 boys and 1 in 189 girls). Additionally, some medical issues have been shown to frequently accompany autism. They include gastrointestinal disorders, seizures and sleep disturbances, ADHD, anxiety and phobias.
As the study of genetics develops and biomedical science advances, new research continues to reveal that the gut is quite likely connected to autism. Because autism is frequently accompanied by GI problems, researches are focusing more and more attention on this connection. Certain chronic GI conditions are caused by a hyperactive immune system, which suggests that there is a probable correlation between the GI symptoms present in autism and the immune dysfunction—likely at a genetic level. Furthermore, Functional Medicine now describes the gut as an extension of the brain and spinal column of the Central Nervous System. This understanding has provided a new opportunity to address Central Nervous System (brain) dysfunction through the Gut-Brain Connection. This is wonderful news regarding treatment options and healing potential for autism. I look forward to watching as the Functional Medicine community explores and tests treatment options by addressing gut health in individuals with autism.
This week, I would like to highlight a local North Iowa family that has experienced incredible healing and transformation with their son who was previously diagnosed with autism. Below is my interview with Shari Hagen, discussing her son Levi’s autism journey.
What first signaled to you that something was going on?
Levi had health issues right away, but I was always told it was normal and it would pass. Sleeping issues, gut issues, and allergies affected him in his first year of life. But around his first birthday, I started becoming more concerned. He started having bad tantrums and had many self-injurious behaviors like head banging and biting himself. He also started attacking us and we would have to put him in a body hold so he wouldn't hurt himself or others. That was around the age of 18-24 months. I asked the doctor about this and she didn't seem concerned at all. He had also started tip toe walking, looking at fans, sensory seeking and avoiding. At age 15 months he was hospitalized for breathing issues and that’s when all his symptoms and problems increased. At that point, he would only eat 5 foods, he would puke at the sight of anything not crunchy, and his speech continued to decline. At 2 years old, his verbal speech included only “da” for dad, “ba” for ball and “do” for dog.
When was he diagnosed?
He was diagnosed with many labels early on: ODD, speech disorders, sensory processing disorders, self-injurious behavior—this was at age 2. It took until closer to age 4 to get the “official” label of autism.
What was the process of getting a diagnosis like?
It was hard. We traveled to Iowa City for most of our stuff, so 3.5 hours one way from here. We spent lots of time in the car and sitting through appointments. What made it even harder was that he was slowly improving even while we were going to these appointments. I know now that his improvement was due to what we were doing for him biomedically. A big part of our struggle was that many of the doctors who we saw did not support us trying the biomedical treatment options we were exploring.
What initiated your journey to explore alternative or complementary treatment options for him?
When he was 18 months I started reading and researching online about autism and what the symptoms were. Levi had most of them. I read another mom’s book about healing autism. Within days of Levi being strictly dairy free and gluten free, his mood improved and his speech got clearer. So, I started to look more into it. I connected with other autism moms online and asked a lot of questions.
What kinds of health practices/medications/supplements did you try?
Diet was the biggie! Gluten free/casein free/soy free. We stay away from as many dyes as possible, eat as organic as possible and low sugar. We also focus on eating healthy fats as well. Honestly, we have tried so many things it’s hard to remember them all. I will try to mention the big ones though. Removing potential toxins as much as possible—from cleaners, personal care products, stuff we were using on the lawn and in our house like candles, getting rid of our traditional vacuum, using as little plastic as possible, no aluminum foil, getting rid of the microwave, etc. Basically the only meds we ever used in his journey were Nystatin (for fungal infection) and antibiotics for Lyme. We also implemented heavy doses of probiotics- every kind imaginable, from homemade ones like ferments to soil-based probiotics to Culturelle, and everything in-between. Fish oil was another biggie. Also, we treated him (and our entire family) for Lyme disease with herbs. Some other things we incorporate as regular health practices are Hyperbaric Oxygen (we have a chamber at home), energy medicine and detoxing metals.
What worked? What didn’t?
Most of what I listed above worked. What didn’t work were tons of supplements that we spent a lot of $$ on—a lot of them I can't remember, but many people do have luck with them. The biggest thing I tell parents is there is always a new and upcoming treatment that’s “all the rage.” I would avoid those until there are some long-term studies or results that people are sharing. For example, CBD did not work for us nor did broccoli sprouts.
What role has diet played?
Changing Levi’s diet is the single best thing we have done. If he has a dietary infraction, we notice right away. Also, if the diet piece isn't in place, the supplements he takes will not work as well.
What is Levi’s current health experience?
He has lost his autism diagnosis. The doctors at Iowa City removed the diagnosis. He is a traditionally functioning 1st grader who receives a little extra help, but not much. He is much healthier than most of his peers. He is just like any other happy little 7-year-old boy. Honestly, I get compliments on how polite and well-mannered he is often. We haven’t had to go to the doctor in the last few years at all besides normal well checks.
Anything else you want to share?
Autism can be helped. There is so much science to support the role of diet and fixing nutritional deficiencies—fixing gut issues and gut flora. Do your own research! Also join Facebook groups—one I recommend is called Recovering Kids/Biomedical Healing. Ask questions. Be your child's advocate!
Shari has dedicated her life to helping other families, sharing her experience and knowledge through health education. If you'd like to connect with her, visit her Facebook page. For more information on a gluten/casein(dairy)/soy free diet, stop in to Simply Nourished during business hours. Tuesday through Friday 10-6 and Saturday 10-4.