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.

Formal Diagnosis, and with it...decisions

We saw the developmental pediatrician at CARD (Center for Autism and Related Disorders) last week and he did a very thorough assessment of Dan. When he was five our geneticist wrote that he "fits the behaviors consistent with autism". We didn't really run with that, though. Now we have a formal autism diagnosis from a specialist in that area.

What now?

For years I've struggled with the school system over communication services for Daniel. In 2004 I attended workshops that the school SLP suggested to learn Every Move Counts, a program for kids with severe disabilities. I was on board. It's a long somewhat tedious story, but in the end, the school was not able to implement the program (the SLP who originally suggested it nixed it shortly after being the one to get me interested. Thanks.)  Every year I've had the same conversations, the same fruitless efforts to have his daily school life include hard hitting communication work.

So, now he has a diagnosis that's characterized as a language disorder. Me thinks they must step up to the plate.

Is a setting that's geared towards autism going to work for him? ABA is the gold standard. I've thought about the rewards that motivate Daniel. He doesn't like food. Praise? Sort of. Plus I've read a lot of books over the years by people with autism who are not happy with their early ABA training.

I tend to be attracted to the methods that aren't mainstream. Facilitated communication is one of them. I've been helping Daniel at home with a letter board and his ipad by supporting his arm so that he can point effectively. It's slow going, but it's working. I saw a documentary and read the book on Rapid Prompting, and I like the ideas the author presents. I don't do the paper tearing, but I present Daniel with two objects, tell him what they are, then ask him to point to the appropriate answer. Example: "This is an orange. This is a pencil. Now, show me the pencil." You get the idea. I just want to know how well he can answer correctly. I don't want to insult or bore him, though, and I've told him as much.

In August I'll meet with "The Team." Teachers, therapists, psychologist, etc. I have to be clear and sure about what I want for Daniel, and I'm not there yet. I'm using this time when both of us are off for the summer to get clear...or at least clearer.

Yesterday my daughter worked with him on identifying letters. He responds well to her because she's stricter with him than I am (she wants to be a teacher, and she's the granddaughter of a very good one. I think she has the touch.). The choice of teacher in the new year is going to be critical, but I don't know how much control I have over that.

So, I'm praying and musing and working with him to get an idea, a vision for what's possible. That's where we are right now.

Autism is a world. That's what the title of the movie says, anyway. Time to open up Daniel's world a little (or a lot) more.

What I wouldn't give...

This video is pretty amazing.

Daniel's on the couch with his iPad keyboard right now!