By Teresa Conrick
In 1999, my daughter, Megan, was six years-old and very sick. Her regression into Autism three years earlier began our horrendous journey into the land of medical denial about Autism. Meg had to endure frequent and copious nosebleeds, unexplained rashes, fevers, non-stop viruses, vomiting, yeast and urinary tract infections, diarrhea with alternating constipation, reflux, and continuous bacterial infections, especially ear and throat. Those were dark days and long nights as she was unable to sleep due to pain, yet again and again, I was told, THIS WAS AUTISM. Today I know that is incorrect and the real reason is that THIS IS THE MICROBIOME, and it is very altered and dysfunctional.
I will repeat this important fact -- since Dr. Leo Kanner first identified those eleven children in his 1943 paper, the medical issues of Autism have been ignored, denied and even disposed – ie,“CDC Scientist: ‘We scheduled a meeting to destroy documents" . This gut-brain axis has been evident since the 1940's but many have denied it and continue to deny it. That needs to end as children continue to suffer. Megan Conrick has much in common with those children, born in the 1930’s – from Kanner :
• "Eating," the report said, "has always been a problem with him.”
• ...large and ragged tonsils.
• Following smallpox vaccination at 12 months, he had an attack of diarrhea and fever
• He vomited a great deal during his first year,
• She quit taking any kind of nourishment at 3 months. She was tube-fed five times daily up to 1 year of age.
• He vomited all food from birth through the third month.
• His tonsils were removed when he was 3 years old.
• He vomited all food from birth through the third month.
• ...large tonsils and adenoids, which were removed
• ...frequent hospitalizations because of the feeding problem.
• He suffered from repeated colds and otitis media, which necessitated bilateral myringotomy
• Because of a febrile illness at 13 months, her increasing difficulties were interpreted as possible postencephalitic behavior disorder.
• He had been kept in bed often because of colds, bronchitis, chickenpox, streptococcus infection, impetigo
• There is a long story of trying to get food down.
The internet was not up and running with AUTISM research in 1999 but luckily, someone I knew had told me about a local conference here in Chicago. The topic was on gastrointestinal issues and Autism. Because Megan’s intense GI issues and her Autism symptoms were just so heartbreaking, I went and my life was never to be the same. That important event was presented by the BHARE Foundation (Brenen Hornstein Autism Research Education), a small but potent organization which has been involved in Autism research ever since.
Here we are sixteen years later yet the information about Autism is often corrupted -- ie, google William Thompson CDC-- or detoured in the press –> remember Dr. Nancy Snyderman on the Today Show in 2010? – “There is no link between illness in the gut and the signs and symptoms we see in autism." NOT TRUE.
A few weeks ago, I was fortunate to be able to hit the streets of suburban Chicago for research on Autism and the MICROBIOME. BHARE was doing their annual Tag Days where they go out and ask carloads of people to contribute to Autism research. I was new to this and it was an incredible experience! For four hours, I was able to get people to donate to AUTISM research, something I have longed for, for many years. Some people would not even give me eye contact, while others rolled down their windows donated and shared how they- had “a child on the spectrum”, were teaching students diagnosed with autism, were speech therapists, special education teachers, had a neice, nephew with an Autism diagnosis, or just wanted to help as they saw the numbers going up and were so worried. Bram Hornstein and his wife, Kim, have been advocates not only for their son, Brenen, but for all of our children.
So here is where we are today based on ACCURATE and HONEST research and thankfully, the BHARE Foundation is at the heart, soul, and GUT of this important trend still:
• Altering the intestinal microbiome of mice or administering microbial metabolites can induce or improve features of autism, an international group of researchers has found.
• “There is an increasing appreciation that not only can microbes influence brain and behavior in disorders such as autism, but that microbe-based therapies may ultimately help ameliorate these disorders,”
• …the tightening of epithelial junctions that occurred after administration of B. fragilis made it more difficult for neurologically active molecules to pass through the intestinal wall and into the bloodstream.
• Serologic analyses revealed that levels of 4-ethylphenyl sulfate (4EPS), a microbial metabolite with neuroactive properties, were 46 times higher in the mice with autism than in conventional lab mice
• …there is “tremendous potential for microbiome-based therapeutics down the road, both in the prevention and the treatment of autism as well as other behavioral and neurological disorders.”
• Researchers say that gut bacteria more abundant in some individuals with autism produce waste products that may affect brain activity.
• … children with autism tend to have abnormal and less-diverse communities of gut bacteria.
• “…if left unchecked, however, harmful bacteria can excrete dangerous metabolites or disturb a balance in metabolites that can affect the gut and the rest of the body, including the brain."
• …some of these studies have associated specific types of gut bacteria with more-severe autism symptoms
• "We suspect that gut microbes may alter levels of neurotransmitter-related metabolites, affecting gut-to-brain communication and/or altering brain function."
I’ll conclude with asking all of you to please send any amount of money to BHARE for their valuable research projects, which you can read about here (and again hit DONATE):
In the 16 years as a Foundation, we have never been this excited about the direction of research. Because of your generosity, and our willingness to fund “out of the box” ideas, great progress is being made.
As you may be aware, the majority of our funding has been going toward studying the gastrointestinal tract and specifically, bacteria differences in people with autism. Dr. Jim Adams at Arizona State University along with Dr. Rosa Krajmalnik-Brown and Daewook Kang have published studies proving major differences in the total make up of types and groups of populations of bacteria in people with autism. We have focused on the GI tract and immune system for many years, as the National Institutes of Health, the CDC, and larger national autism groups have generally ignored that area. We are very pleased to tell you that Autism Speaks (the largest autism research group) has announced that they are going to be funding major studies looking into what we feel is real research. They will be committing two to three million dollars to study the GI tract and bacterial differences in people with autism. This new direction for them would never have occurred if it were not for your donations helping us to seed “unconventional” research.
Dr. Steven Walker at Wake Forest University is working to develop a relatively simple blood test that would allow clinicians to make a decision whether or not a person with autism should undergo an ileocolonoscopy. Pediatric gastroenterologist Arthur Krigsman, has performed this procedure many times and found a large percentage of children with autism have GI inflammation and other damage to the GI tract. When this biomedical condition is treated, many patients have a reduction in autistic symptoms. It would be very beneficial to have a blood test to determine if this invasive procedure is needed, based on inflammatory markers in the blood. We will be funding this work shortly.
Last year we funded a follow-on study to further investigate differences in gut bacteria in children with autism. We are pleased to report that this seed funding led to a $300,000 grant from the state of Arizona to researchers at Arizona State University and their collaborators to conduct a research study involving a special treatment to introduce many different species of bacteria into the GI tract to try to improve GI and autism symptoms in children with ASD.
Thank you to BHARE for their continual pursuit of studies destined to treat and cure the suffering of so many. I am a believer and a big fan. Let’s help them get this important research done!
Teresa Conrick is Contributing Editor for Age of Autism.