One of my recent families consists of twin boys who are quite affected in their autism. They seem to be in ill health constantly. There is a never-ending stream of doctors’ appointments, therapies, schools and IEPs, medications, supplements, and special meals. Plus, these wonderful parents take the children to restaurants, on trips and the other various life situations that neuro-typical children experience. While I was speaking to the mom on our initial visit, I happened to exclaim that, “I don’t know how you manage such a complex life. I couldn’t do it!”
As she was checking out with the staff, the mom complained to my office manager that, “It’s not very professional for the doctor to make such statements.” Now, Karen, who also has an autistic son, knew that I was only admiring the work that such a parent has to endure, but also understood that Mom was just being extra sensitive and didn’t comprehend my appreciation for that journey. It doesn’t take a rocket scientist to see how much time and energy parents spend trying to get their kids on the right track. But, friends are difficult to find and make (for both the parents and the children), siblings have their lives disrupted in order to accommodate the affected child, relatives don’t seem to really fathom the scope of the problem (something must be wrong with your parenting) and even grandparents have difficulty giving the love and assistance that would normally be afforded to the youngsters.
Dr. Rossignol, a respected autism researcher and clinician, often tells a joke that, “You know your family has an autistic child when it takes longer to order a meal than to have it delivered to the table.” As I have taken care of an increasing number of families who are affected by this modern epidemic, I am learning to appreciate that it’s not just a joke.
How many of my families have
NOT taken a vacation for years?
Sometimes, it is because the child would neither be able to understand a change in schedules, nor have enough self control to endure a long car trip or plane ride (airports – oy vey). Leaving the child at home is only an option if there is an appropriate caretaker; such are few and far between. Also, many of the patients have comorbidities which make a simple trip quite complicated – nebulizers, medications, schedules and equipment that must accompany the family in order to maintain good health or avoid a medical disaster. It’s not as if a doctor in a different city is going to have a clue as to what your special child needs should they become ill. Emergency rooms visits are never a picnic, so imagine what it’s like when there is a complex underlying condition to explain.
Complications multiply as ASD patients grow older and discover that they can have more control of their environment, but still possess only a restricted range of expressive behaviors (= frustration). Many families have more than one affected child. Siblings who are not totally healthy (ADHD or allergies, for example) have their problems, also. Healthy siblings have lots of issues, too, and their needs have to be addressed. Umm… how about Mom and Dad and their marriage? That’s a lot of juggling!
So, this week, while I was getting to relax on MY vacation, I had several of my older male patients who had meltdowns – in school, at the mall, and at home. These families were doing everything possible just to keep some semblance of normalcy in their chaotic lives, attempting to get some relief for the affected child. They had to deal with the siblings, spouses, their classmates, teachers and administrators. Some even had to deal with the police and the legal system.
I am writing this post because, while next month is Autism Awareness Month, every day is autism awareness for over 1% of our population.