Autism is rarely diagnosed without there being additional considerations or disorders. In my family, we are not strangers to illness. I have spent the past twelve years sick and looking for answers. I am going to share some of my journey in the hopes that it can help one person.
I have two rare brain disorders and one autoimmune disease that have caused me endless amounts of pain and grief. At first no one believed me. I was initially diagnosed with celiac sprue after a year of emotionally painful searching where most doctors, and even family and friends decided I was either crazy or anorexic. Two weeks into the diet, and life was amazingly better. That journey led to my son being gluten free until he was two, and then after a trial of gluten that was rather disastrous, he returned to being gluten free and will be for the rest of his life. Many families and doctors recommend the gluten free diet for children with autism, and so we avoided many problems and had more success with Ben than we might have otherwise simply because of my medical history. In that way, I was the one who had to suffer the most, and I am grateful that we were already gluten free when he was diagnosed, as there were no huge changes to be made.
The brain disorders are linked. I should also mention that due to endometriosis, adenomyosis, and endosalpingiosis, I can’t have any more children. Basically all the cells that are involved in reproduction had migrated to my abdomen and were causing trouble. They are extremely painful and even dangerous disorders and I was lucky that I was persistent enough to have the surgeries and necessary treatments to find them. I will always regret not being able to have more children, and hopefully we will be able to adopt soon. The primary brain disorder is called a Chiari Malformation. Mine happens to be Type 0. The types are based upon how far the tonsils of your brain have descended into your spinal column. Mine had not descended and thus made the diagnosis really difficult.
I was initially diagnosed with fibromyalgia, as I was in constant pain, primarily in my neck and shoulders. After several years, my body began to fail. My pituitary gland stopped functioning and with it my thyroid, my adrenals and all other hormones just stopped. Most people with this issue die. I was lucky/blessed, and was also misdiagnosed with Multiple Sclerosis, which meant I was treated with steroids when things got bad, and steroids are also the treatment that kept me alive until the could find the true problem. My pituitary gland failed because of the pressure in my brain caused by the Chiari Malformation.
Basically, with Chiari, the skull and spinal column are too small for the brain increasing the pressure in your brain and spinal column, and causing part of the brain, the tonsils, to descend into the spinal cord. This can cause paralysis and other things as that is also the location of your brainstem. I was fortunate that there was no movement of my brain into my spinal column, but I had all the hallmarks. Constant headaches, scoliosis, neck pain, loss of gag reflex and other symptoms mark the disease. I found a specialist in my city by pure chance, and was able to run the correct tests and measurements. The most interesting part, was he asked me if I would go through brain surgery just to relieve the pain in my neck, and my immediate answer was yes. Chiari is easily corrected through surgery, and while it often cannot repair past damage, it prevents further damage. I had the surgery three weeks after my diagnosis.
Now what on Earth does this all have to do with autism. My son doesn’t just have autism. He is also gluten intolerant, and has ADHD and dyslexia. We recently were told that he had a heart murmur and that Chiari is genetic, so both of those must be tested for. He will have a cine MRI as soon as we can get it scheduled to check him for Chiari, and then he gets to see a pediatric cardiologist. Recent studies show a genetic link for autism, and dyslexia. There are genetic components to Chiari, Celiac Sprue, and autoimmune diseases.
While autism is not a medical disease, I personally believe that there is a medical component to autism that needs addressing and that it will probably be different in each child. Autism is a cluster of behaviors, of thought processes and actions. Underlying issues often influences those behaviors. Not every child will respond to every therapy, and not every therapy is worth trying. However, by listing autism as a purely behavioral disorder we may be missing out on many ways to help our children live fuller happier lives. So, for those of you looking for a cure, keep going. For those that are happy where you are, you’re doing the right thing, and for those just getting started, look at your family history, at yourself, and your health. There may be more than just behavior management for you to try.
Photo: Damon Sacks/Flickr