Wednesday, January 14, 2015

Raising the Bar

A few years ago I attended a talk called 'Autism Across America" during the Family Cafe on Disabilities conference in Orlando.  The lecturer was a guy in his thirties with autism. He was clear on the point that he does not have Asperger's, he is autistic.

One morning that week I sat having my morning coffee while Daniel drank a Pediasure at the Cabana restaurant when the speaker (I've forgotten his name) joined us. We were outside next to the pool and the weather was just beginning to change from warm and bright to dark and windy. Daniel was covering his ears as he sometimes does. I asked Dan if the music playing overhead was bothering him, and the man immediately said, "It's the wind". After he said that, Daniel clapped and smiled. This is his most reliable way of saying yes. Our new friend added, "To an autistic person the sound of eyes blinking can be painful."

It surprised me when this man went on to tell me that Daniel reminded him of himself when he was young. He was there promoting a fiction series he'd written featuring an autistic main character. Was he really once as severely affected as he was saying? True, his eye contact seemed a little forced, and his speech patterns weren't typical, but he was obviously very independent. I didn't see a strong connection between them. I've learned more and my understanding has evolved since then. It's not about levels of functioning, it's about similar ways of experiencing the world. It's knowing first hand just how sensitive one's senses can be.

Later that same summer Daniel was assessed by the physicians at CARD (Centers for Autism Related Disabilities). We'd often been asked if Daniel were autistic when out and about doing our thing. While grocery shopping, one of the cashiers told me that his brother was autistic and smiled at Dan. Things like that happened a lot, but I always considered his autism secondary to his microcephaly, as it is in Rett Syndrome. I was unclear about the significance of the label because I was told so many times that he is profoundly mentally handicapped. I didn't understand enough yet. The specialists at CARD made the diagnosis official when Dan was thirteen years old in 2012.

Many people with autism who have learned to communicate through pointing to letter boards or typing say that they were considered to have very low IQ's until they could write and express their thoughts. Even then they were doubted and sometimes totally discounted. They write about the intense difficulty of getting their bodies to do what their minds want them to, such as dressing and tying shoes, or even pointing to the correct answer when they fully know it. Our conference friend told me that he had to work very hard just to make eye contact and vary his speech patterns. For many years he didn't speak.

I talked with another adult autistic the summer of Daniel's diagnosis. William Stillman is author of several books including Autism and the God Connection. He gave me feedback about Daniel that encouraged me to go forward with teaching Daniel to point and type. He reinforced the need to treat Daniel in an age appropriate manner. No more baby type toys or shows (I had been already been preaching that for years). "Treat him like the teenage boy he is!" Stillman insisted, even telling me that it was time for "the talk" regarding his changing body. He was emphatic. "Daniel deserves to have the information he needs about what's happening to him. Don't talk about him, speak to him. Make sure the bar is raised in terms of respect."

A lot of teenagers with autism and other disabilities are treated as if they're much younger when they aren't able to talk, walk or use their hands to easily manipulate things. I always explain that Dan requires total assistance with all aspects of his daily life, but I don't believe I have the right to assign a baby or toddler age to him just because he needs those supports. He is sixteen years old, and he has that many years of experience under his belt. I believe he deserves credit for that.

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