Question & Answer - Autism
Have you ever wondered why some people with autism get health and functional improvements from an intervention like food changes and others seem to show no benefit?
Have you ever wondered why some people with autism get health and functional improvements from an intervention like food changes and others seem to show no benefit? Or, wondered why there's such a big gap between a good day and a bad day for the person with autism in your life?
ANSWER FROM JACKIE MCMILLAN (BES, ASPERGERS) IN SOUTHWESTERN ONTARIO, CANADA
I have a unique perspective on these questions. I have autism, and at age 11, I spent one month with a wilderness canoe-trip organization that changed my life. Through that month, ever-so-gradually, my pain levels dropped, my emotions smoothed out, my thinking and memory improved, my reaction times got much faster, and I was able to make and keep friends.
Unfortunately, within two days of returning to my normal inner-city environment, everything slid back to “ground zero.” I desperately wanted to go back to the amazing quality of life I experienced in the wilderness, and I was determined to figure out how to recreate it.
My Personal Journey and Turning Points
I turned my life into a science experiment, testing out every factor that had been different between the two environments. Through lifestyle choices, my thinking improved enough that I was able to go through the science track in high school, where I began to “chase down” my symptoms in medical journals. No-one ever mentioned autism. My parents felt I had enough to deal with, “sans diagnosis” and the threats of institutionalization - which would have been typical at that time for someone with autism.
In my second year of pre-medical studies in college, I hit a roadblock. Though the medical journals covered many of the factors which I had discovered could help or hurt me, medical school focused on diagnostics and drugs. I knew drugs were trouble for me. In a pharmacology course, I had looked up every drug I'd ever taken. I had all the side effects plus some, and even the intended effects were disproportional to the benefits I received. Therefore, I wasn't going to get the answers I needed from the medical training available to me at the time.
That roadblock sent me into two years of depression and confusion, as I went through my options and tried to regroup. I “ended up” in a different university program, environmental studies. Around that time, a nurse gave me an informal diagnosis of autism. When I went looking for more information, the medical journals were “spot on” in their diagnostic criteria of Autism Spectrum Disorder (as it applied to me), but the treatments and theories didn't make sense at all. Not only did they ignore the very real health problems at the root of my worst symptoms, they also involved some potentially harmful treatments such as drugs (with significant side effects), physical restraints, electroshock, and isolation.
Initially, I worried that I was “crazy” in what I'd discovered about the things that helped or hurt me, but connecting with other adults on the spectrum reassured me. However, I was very frightened of being diagnosed because of available autism treatments at the time! But when I began to teach people – parents, educators, health and therapeutic professionals, assisted living staff, and others -- about my autism recovery discoveries, they struggled to believe I had autism. It took 20 years of social change before my determination to be believed (and get an official diagnosis) outgrew my terror of being subjected to terrible things! Fortunately, the experiences of others with autism mirrored mine, though few had taken it on as their obsession for study (or “special interest,” as we with autism like to say). Here are some of the things I learned through my own life, experiments, and study.
The Outdated Model of Autism
There is an outdated model saying that autism is an incurable neurological disorder and that nothing can be done except to suppress the symptoms or the individual in a variety of ways. If the person’s health improves enough to camouflage autism in the school or working world, then the original diagnosis must have been wrong. An unintended result is that this model silences those with autism who have experienced some degree of recovery. We now know that this outdated model isn't true.
The Bio-Medical Model Treats Three Root Causes of Autism
Since the 1960s there have been doctors’ children who have recovered enough health and function that these MDs began treating other children (who had autism) with some success. This process helped to launch a new type of medicine called “Functional Medicine.” Functional Medicine Doctors work with the biomedical model, which says that autism is caused by some combination of malnourishment, impaired detoxification, and immune dysfunction.
Bio-medical treatments are usually very intensive. They often include expensive supplements, detoxification protocols, and immune system supports. They are frequently inaccessible to many who cannot afford them or cannot find a doctor who keeps up with the research and is willing to try them. And, while some doctors will dialogue with adults on the spectrum to try to gain an inside view on less-abled patients with autism, this is very rare.
In addition, creative and insightful Functional Medicine Doctors are often demeaned as practicing outside their professional association's "standards of practice" – which seem to be “stuck” in the outdated model's understandings. This problem appears to extend throughout the Western Medical System, wherever it is dominant. While the complete understanding of bio-medical treatments is still “spotty,” it is improving with research.
Two Other Root Causes of Autism
There are many, many adults on the autism spectrum who began with significant impairments and are now sufficiently functional. Many of us can participate (at least to some extent) in venues and interactions formerly limited to those in the general population. Our collective experiences point to two root causes of autism which are not included in the biomedical model. These are unresolved trauma, as well as brain and nervous system impingement.
There are simple and inexpensive lifestyle choices which can maximize function. There are also lifestyle choices that can quickly detract from function depending on the person with autism. This makes a great deal of sense considering the variable function and symptoms of each individual with Autism Spectrum Disorder (ASD) from day to day! With different blends of the different root causes in action for each individual, these lifestyle choices vary, but the commonalities are obvious (once you can see them).
Interventions vs. Lifestyle? Or Both?
Beyond lifestyle choices, interventions can still make a huge difference in the health, function, and quality of life for people with ASD. How do we tell which interventions will help which person? Fortunately, the symptoms themselves “point the way.” The unique symptoms expressed by each individual can make it much easier to understand which of the five causes might be in action, to which degree, and in what order of priority for that specific individual.
However, tailoring treatments to the relevant root causes is not enough on its own. Without the lifestyle changes which support a return to health, functional gains are as short-lived as mine were from that summer camp experience. Fortunately, what is healthiest for people with ASDs is what is healthiest for our entire human race. Health challenges as disparate as hair loss and cancer respond favorably to the same or similar lifestyle changes.
In my experience, the “straw that broke the camel's back” to bring on the symptoms of ASD can be figured out, and quality of life can be improved for every individual on the spectrum. Some repairs are easier than others, and some are more complete. But, the potential contributions (from individuals with autism using our problem-solving brains) are needed by our culture in this time of change. This is my mission. Won't you please help us to thrive?
About the Author
Jackie McMillan (BES) has Asperger’s Syndrome. She has spent the years since 1976 -- a year of dramatic gains and losses in function -- figuring out what helps, what hurts, and the science which explains an inside-out view on autism recovery. She has avidly developed skills and tools to communicate her ongoing findings since her first, informal diagnosis of autism in 1988.
Jackie has created two free webinars about the five root causes of autism and lifestyle changes that can support a return to health for individuals with ASD and others. Jackie also has insightful blogs and other resources on her website ThriveWithAutism.ca.