I have cared for children with some of the most life-altering medical conditions imaginable, from brain hemorrhages to beatings, AIDS to ASD. In the Newborn Intensive Care Unit, doctors often remarked, “It can always get worse!” Somehow, it felt as if holding our own with a tiny baby’s vital signs was all that could be done, “…so let’s be satisfied to perform our best and pray that the situation won’t get any more complicated.”
In the past five years, as I have chosen to focus my expertise on the emerging epidemic that we call autism, I have had the pleasure to meet moms and dads who are among the most patient, caring and tenacious caregivers ever. Christmas is a time for children, presents, family, department stores, special foods, etc. – all the stuff that patients either choose to ignore or sends them into their own world of isolation.
The air is full of sensory-enhancing smells, sounds, textures and sights that represent just the kind of stimulation that ASD patients don’t understand and don’t prefer. While their reactions are appropriate from an affected person’s point-of-view, behaviors can appear mysterious, frustrating and disappointing to family members.
Well-meaning parents only wishing to provide a special holiday experience are hard-pressed to provide the most optimal environment. This is especially true when there are other neuro-typical siblings, cousins and neighbors who come to visit. Somehow, the expectation is for interaction. Sometimes, it’s great and new play emerges, but not always.
Last year, our Patient and Efficient Practice Administrator, Karen, saw her son’s delightful artistic reverie turn into a breakdown, due to the ‘encouragement’ of well-meaning relatives. My advice is to let the affected child enjoy the holiday in whatever manner they seem least stressed. Instead of spending your efforts having the child do the socially correct thing, watch them enjoy doing their own thing. After all, who hasn’t witnessed a youngster who prefers playing with the box, instead of the toy inside?
My Christmas wish is that more money, research, personnel and effort will be put into this new medical condition. I want my colleagues in the medical profession to wake up on this issue. Pediatricians need to stop telling parents that a 2-1/2 year-old doesn’t talk because he’s a second child, an only child, a boy, his father spoke late, or whatever folklore they recite. Gastrointestinal health is a sign that warrants safe evaluation and intervention, not a behavioral annoyance.
If we learn to recognize the epidemic, more work will be put into solving the puzzle and treating the children as early as possible. What good does it do to report that we have an earlier test for autism if the neurologists merely respond by advising, “Let’s wait until he’s older to get some therapy…”? I want ASD to be considered as every other medical condition. At the earliest signs, patients need an appropriate workup, traditional therapy AND medical intervention as indicated. Importantly, insurance companies need to recognize the savings that will come from successful protocols.
The experience of dealing with developmentally challenged people has had a profound effect on more than just my scientific outlook. I no longer take the tone that I previously expressed, feeling that “Things can always get worse.” I have great hope for the future. I want every child to enjoy the holiday season and every parent to enjoy that thrill. Things can only get better!