With the epidemic number of individuals who are diagnosed as having Autism Spectrum disorder, why is it taking so long for families and patients to get real medical relief? It seems as if cancer, diabetes, heart disease and HIV have new information and ‘cures’ reported practically every day. Nevertheless, regarding diagnosis and treatment, we seem to have been plugging along on the same path for the past 15 years or more.
Here are my top 10 reasons for the bottleneck that is preventing parents from achieving an ‘optimal outcome’ for their developmentally-challenged offspring:
10. It’s been called a ‘genetic’ disease for too long. In the olden days, when I saw my first case of autism, the incidence was said to be 1 in 5,000-10,000 patients. We didn’t have computers with accurate databases; so, if we saw approximately “X number” of patients per year, that was considered the rate. Diseases with such a low incidence (as in the 1950’s) were generally considered genetic. Also, the increased rate of children within an affected family helped confirm this belief. Actually, what we have identified is genetic susceptibility, not cause. Finally, there are some genetic disorders with a presentation that fits the criteria of social isolation, repetitive movements and communication delays.
9. It is a very imprecise and ubiquitous diagnosis, covering many conditions. It is possible that children in the previous century who were diagnosed with mental retardation or other developmental disorders may have been patients who suffered with ASD. However, as pointed out in the literature, this misrepresented diagnosis does not account for the great increase in cases. In 1913, patients may have been told they had a ‘lump’ on their arm; but, by determining the cause of the cancer, the site where it originated and the aggressiveness of the disease, medical science has come upon superior means to determine treatment and prognosis. We are presently at the ‘lump’ stage for autism.
8. The medications and supplements that medical professionals are presently employing to address the signs and symptoms of autism are woefully ineffective. This has created an inertia slowing progress for any newer treatments as medical science searches for useful, safe answers.
7. There aren’t enough professionals who are willing and/or able to diagnose and treat the epidemic proportion of developmentally challenged children. As a neonatologist in the earliest days, there were over a thousand doctors who wished to discover the cause and treatment of premature lung disease. At the last MEDMAPS meeting, there were about 100 pediatricians from all over the world trying to help. There are simply not enough of us.
6. Human epidemics are essentially environmental. Some combination of poisons in the air, food and water are acting upon susceptible individuals who cannot adequately detoxify. Those agents are proliferating, not diminishing, in our world.
5. It is generally believed by the conventional medical community that physicians who espouse environmental theories and nutritional interventions are ill-advised at best, sometimes ‘kooky’, and charlatans at worst. While other professionals such as chiropractors, naturopaths, and holistic practitioners are helpful, I believe that it will be the medical doctors who will be making the accurate diagnosis and providing effective treatments in the future.
4. Except for a very few companies, insurance does not even begin to adequately cover this disorder. Without that money going to effective practitioners, there is little incentive for present or future pediatricians to go into this complicated and time-consuming field.
3. Likewise, there are few pharmaceutical companies that see the intensive investment in time, money and personnel to get involved with such a nebulous and complicated disease entity.
2. Political groups are not unified in their understanding about the disease, nor in their involvement throughout the process. Diseases such as cancer and HIV have well-known celebrities and spokespeople to offer their support and encourage funding. Except for some sports figures and Jenny McCarthy, autism is not well-represented to the public.
1. To paraphrase Henry Ford, if we think that we can’t do it, we are not going to be able to cure autism.
“If you think you can do a thing or think you can’t do a thing, you’re right.”
Let’s be sure that we think that we can.