Medical

Navigating the Medical Maze

As a first stop for parents on the medical track, I recommend the Autism Research Institute (ARI), an organization doing cutting-edge research and training doctors in the latest treatments that are helping our kids. Their website (http://www.autism.com) has a section which allows you to find an ARI doctor near you. It is important that you are comfortable with your child’s doctor and that he or she has significant experience with autism. Most ARI doctors see parents as partners and work closely with them doing numerous tests and interventions.

To educate yourself in the ARI protocol before your first visit, I recommend the book Autism: Effective Biomedical Treatments by Jon Pangborn, PhD, and Sidney Baker, MD. The ARI website also has videos of recovered children which will inspire you to move forward and to keep at it when times get tough.

The first biomedical intervention for most children with autism is a special diet because most of our children have digestive issues. Most parents select the gluten-free, casein-free (GFCF) diet or the Specific Carbohydrate Diet (SCD), and you can find excellent books that lay out these diets and give recipes (see Appendix B). Making this diet transition is not easy, but trying it is vital, because some children recover from autism with this single intervention.

For us, neither the GFCF diet or SCD were a cure, but they must have been doing some good, as judged by the “grandma test.” About six months into the diet, Elizabeth, who was finally sleeping through the night again, woke up screaming. I went into her room, and she was shaking like a heroin addict. I held her for hours that night as she wailed and thrashed uncontrollably.

The next morning, I called my mother and asked her if she had given Elizabeth anything unusual to eat the day before. She thought for a moment and said, “Oh, yes. I did give her one of the butter cookies that I baked that morning. Oh, what’s the harm in just one little cookie?” Ugh! That is the grandma test: as hard as you try to stay on a special diet, at some point, grandma will slip in a butter cookie, and chaos ensues.

So when people ask me if special diets worked for us, I say yes because even though the diets didn’t cure our children, the alternative of chronic constipation and sleepless nights was much, much worse.

The treatment of autism is still in its infancy, and no single physician or institution has all the answers. Even if your doctor is among the best specialists in the treatment of autism, you should seek out other experts. You will hear other parents talk about chelation, hyperbaric oxygen treatment (HBOT), and many other “alternative” treatments. You and your doctors will need to put together a comprehensive plan because it is important to do these treatments at the right time and in the right way for your child’s particular situation. Your plan will be guided by the results of many blood, urine, and stool tests.

Many children with autism suffer from a wide range of physical issues, such as allergies and difficulties in digesting food. Most need vitamins and supplements to balance their limited diets. Seek out experts in nutrition and gastroenterology who have a focus on autism. If the problem is verbal, find a speech pathologist. Each child’s case is unique. For most, the journey is a long one.

I urge you to keep reading and researching on your own. The internet offers a wealth of information, but I would also urge you to talk with other parents informally or in support groups. Compare notes with other parents on the Autism360 website and see what is working for them. Together we will prevail. Autism is treatable and beatable.