The pediatrician kept on telling me that everything was fine. What could possibly be wrong? His motor skills were right on time, if not a little early.  He even had emerging problem-solving skills. He did things like push a chair up to a shelf to climb up and get what he wanted.  Three decades later, he still does clever things that make me question why he is so impaired.

Unfortunately, there was also a heck of a lot that he wasn’t doing at that time. He didn’t he hold up his arms to be lifted out of his crib. Smiling and cooing conversations were absent from our parent-child relationship.  Against the pediatrician’s recommendation, I had my son, Isaac, tested for developmental concerns at age 2 1/2.

It was autism.  Not the awkward, absent-minded professor type, but the severe non-communicative, non-cooperative type.  Today, he would have been diagnosed as Autism Spectrum Disorder Level 3.

My experience with my son and health care got worse as our journey progressed.  There were few accommodations in the health care system for someone like him.  Many physicians, other health care professionals, and hospital staff had no clue as to how to work with Isaac.  Some couldn’t examine him, calm him, or provide resources for someone like him.

Most had no training in autism. They hadn’t a clue as to what to do about a non-cooperative patient like that. Insurance reimbursement rates didn’t and still don’t cover the extra time required to care for someone with this type of autism.

The schools refused to work with Isaac on learning how to cooperate with medical and dental care providers. They had no experience with that. It probably sounded like hard work that they didn’t want to do.

I was told by numerous dental establishments that my son needed to be put under anesthesia once every two years to have his teeth cleaned and X-rays taken. Anesthesia always carries a risk, but for someone like him, this is the first line of dental treatment. This never sounded right to me.   Wouldn’t we be taking a risk to address dental care once every two years instead of every six months or more often? Even today, dental schools across the US teach young dental students that anesthesia is the way to go for someone like Isaac.

I was fortunate to have a dentist friend who was willing to work with us.  I knew that the same behavioral principles that we used to teach him to go to the bathroom and to follow instructions could be used for practically anything … even for accepting dental and medical care.  While this involved many hours of hard work and visits to the dentist, he learned to accept dental cleanings and X-rays.  He also became more cooperative with other medical professionals as a result.  (He does need anesthesia for cavities and other more involved dental procedures.)

Isaac also has Crohn’s disease, which is controlled by medication. He requires periodic colonoscopies.  While his first colonoscopy was a nightmare, his most recent colonoscopy went swimmingly at a hospital that was willing to make accommodations for his autism.  Accommodations for autism are tricky because they vary so much for each person.  Some autistic individuals have a very hard time with the plastic bracelet that hospitals tag on patients.  Those bracelets don’t bother Isaac at all. However, he does need an array of accommodations at the hospital.  It is extremely difficult for him to wait, and he needs to see us (his parents) to allay his fears and anxiety in the hospital.  The disabilities coordinator spoke to me about his needs for accommodations before that last colonoscopy.  I believe that and the hospital’s flexibility made the difference for him.

There have been some recent efforts to address health care for individuals with intellectual and developmental disabilities in our community.  These efforts mainly concentrate on helping medical professionals develop empathy and sensitivity to individuals with intellectual and developmental disabilities.  They include the ARC of Massachusetts’s Operation House Calls and the Boston Medical Center’s (BMC) Autism Friendly Initiative.  While these efforts can be helpful, they don’t do much in the way of instructing health care or education professionals on how to use behavioral tools in order to teach these individuals to cooperate and communicate with health care professionals.

In his book, Crimes Against Humanity, Benjamin Ricci explains how residents of the Belchertown State School received sub-standard medical care.  All the residents in the institution received medical care on the premises. There were unlicensed health care staff treating those residents. When individuals moved out of institutions and into community-based settings, the hope was that individuals could receive the same medical care as everyone else using the mainstream health care system. Unfortunately, there was not much thought, planning, or coordination between education and human services sectors and the health care sector on how to tackle this.  Families, disabled individuals, and health care professionals were and still are pretty much on their own in that regard.

Irene Tanzman is a patient advocate and author of Abie and Arlene’s Autism War.

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