Doctors: The Disability Trinity Part Three

If you care for a child with autism you are likely to see a bizarre set of what seem to be random medical professionals. Pro tip: only a few of them will know about anything about autism. I know it may sound weird that someone could get through medical school and know so very little about a disorder that seems to affect so many people, but that’s the breaks. The reason for this is simple: autism affects every part of your child’s life. As such, you might visit a Gastroenterologists looking for a reason that your kid only poops twice a month and you leave teaching them all about sensory processing disorder.  Or you may take your kid to a geneticist because somewhere in the back of your mind you have a nagging feeling that your kid has something-that-looks-a-lot-like-autism-but-is-in-fact-a-crazy-genetic-disorder and end up spending hours answering questions that all end with very expensive genetic testing that your insurance company won’t cover. You’re likely to see nutritionists for your kid that only eats lukewarm french fries or at the neurologists for the kid who doesn’t sleep and may be having nocturnal seizures or the orthopedists who swears that your kid will quit toe walking with the right inserts or the optometrists because you can’t really tell if the fact that your kid can write but doesn’t read is the autism or a vision disorder and the hearing tests to rule out the chance that your toddler just can’t hear you and so forth and so on.  We, in the autism community specifically,  have a shit ton of other disorders, syndromes and general afflictions we rule out even after the autism is diagnosed.

Many of the specialists that you will visit will not be trained or sometimes even willing to see your kids. The practitioners who aren’t trained are usually more than willing to learn.  Be patient and kind to them. The practitioners who aren’t willing to see an outside of the box kid? I say, fuck these people. You want a boutique practice? Enjoy your cash paying clients and your well deserved lawsuits.

I used to get super frustrated by almost everyone in the medical community. However, over the years I’ve learned to view physicians as regular people who are a little more curious than average. The difference between them and me is they have learned to accept the unknown more than I’m able.

There’s a reason I could never accept the unknown: I spent the first ten years with my autistic daughter in an absolute state of panic. There were many mornings that I woke up to rearranged living room furniture or broken eggs all over the house. I figure the stress I was feeling most days came from a subsequently diagnosed anxiety disorder, a very bad marriage, worrying about my two other small kids, and the totally legitimate fear I had because my autistic daughter was a “runner”. She ran everywhere and she screamed over almost anything at anytime, several times a day. She wore a diaper until she was six and like many autistic kids, my daughter didn’t sleep much so for a few years I didn’t sleep much. You can imagine: taking my squirmy, screaming, diapered child with two other toddlers in tow to the doctors was not something that I looked forward to.

On the rare occasion that I would take the kids to a pediatrician’s office, they often didn’t examine my child because she couldn’t sit still or stop crying. Me, being shell shocked and exhausted, didn’t protest much. Not a good mom move but I learned and eventually I got fed up and made a few phone calls.

First I calmly called the pediatrician’s office and politely told them that I was not going to accept the “we can’t examine your child ” excuse anymore and I wanted someone to examine her. She needed a physical. There were many phone calls to office managers and nurses and nothing was being scheduled. They seemed to have no game plan, so I called the director of outpatient clinics at the local children’s hospital. Suddenly someone listened to me.

There were so many times when I would take my puzzling child to a doctor to be met with a look of sincere interest followed by a shrug. They didn’t have many answers, no protocol, but lots of pats on the back (usually toward the door). I asked for so many tests. So many MRIs, EEGs, CBCs, and a battery of psych tests, and so few results. So when I finally spoke to anyone in the medical community who seemed to listen to my concerns and actually had a plan for something to do, I felt vindicated, which, for an autism parent, is as good as it gets. Finally, a hospital administrator had me and my daughter come in after hours when there were no other kids in the waiting room that could distract her. They only turned on half of the lights, the physician examined her without a lab coat, and took a few extra minutes than usual. This was the first real examination she ever had. She was five years old.  Imagine what it’s like to sit up all night wondering if the screaming and the staying up were all due to an inner ear infection that no one ever caught because no one was able to look into your child’s ears.

At the end of the day it was easy to examine her under the proper conditions. Still, even after describing the above experience, her pediatrician’s office just couldn’t accommodate her. I eventually found a developmental pediatrician when she was eight years old who was able to examine her with ease. But, still, his office staff was not eager to accommodate her. I never asked for them to dim the lights but I did take her to wait in the hallway outside of the lobby because the other kids crying could set her off. She was a gold medal screamer.

When you have a young child with a disorder that is diagnosed only by observation and questionnaires, like autism is, it seems very natural to spend a lot of time looking for answers. There has to be a test, a definitive test.  Holy shit if they can analyze your handwriting, can’t they have a definitive autism test? And I know that the autism tests are pretty definitive but…really, a few dozen questions and that’s it?!

We want a pill, a protocol, a treatment. I followed through with a 40 hour a week in home therapy program but the truth is that I don’t really know if it did anything at all. I don’t know if I’m tired of trying to treat autism or just used to autism but either way, my daughter has been out of the diagnostic phase for the better part of 15 years now.

She eventually grew out of a lot of her screaming and with lots of occupational therapy she was able to overcome some of her sensory defensiveness. She still takes a few extra minutes to process everything that is requested of her. But here’s the punch line: after years of screaming and frustration she may be the only 23 year old in the world who loves to go to the doctor’s office. So I am forever grateful to that hospital administrator who arranged her first real physical. All it took was someone who would be willing to accommodate and work with her. It took someone who would listen to her.

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