Thursday, February 10, 2011

A few words about Autism

autism hat
Today I am wearing my autism hat. And by that I do not mean that I am obsessively lining up my matchbox cars according to the colors of the rainbow and I am not watching my favorite video over and over again and then walking around the house repeating my favorite lines verbatim, perfectly replicating the intonations. I will admit to being fairly meticulous about certain things like loading the dishwasher the (exact) same way every day (and rearranging dishes that are not loaded "correctly") and I when I eat skittles or M&Ms I like to sort them into piles according to color. But I’m not talking about those quirky behaviors. I just mean that today I’m thinking about autism and how it has shaped my life because the editor of my college alumni magazine has asked me to write a short story about what it is like raising a child with autism.

When my daughter, Martha, was 21 mos. old she was diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified or PDD-NOS, for short, except that PDD-NOS is not really that short and why on earth would you go around using initials that no one knows the meaning of anyway because eventually you’re going to have to explain what the initials stand for (Pervasive Developmental Disorder, Not Otherwise Specified) and your audience, most likely, will not have a clear understanding of what that means either so you will have to explain it even further. Nothin’ short about that. The problem with PDD-NOS, the initials as well as the words, is that it’s not the least bit descriptive. It just sounds like someone couldn’t think of a better name for the diagnosis so they said, “Hey, let’s string a bunch of words together that sound significant but don’t make much sense all together. It’ll be real useless to parents and it’ll take them several months just to figure out what all these words mean, to say nothing of what the specific diagnosis means to them and their child.” It is part of the Autism Spectrum and it means that your child has several behaviors that are common to a child on the autism spectrum except that your child does not meet the criteria for any of the other diagnoses that are also part of the autism spectrum (such as Asperger’s Syndrome, Rett Syndrome, Childhood Disintegrative Disorder or Classic Autism). Like I said, it is not helpful. And it will not guide you in the treatment of your child. It will take you five minutes to say and even longer to explain, which is why I just go around saying my daughter “has autism” or she is “on the spectrum.” (NOTE: Anyone out there who feels compelled to explain the meaning behind PDD-NOS, please don’t, I actually do understand it after all these years, I’m just not going into it right here.)

When she was six years old my husband and I took her to the University of Minnesota Autism Clinic to be re-evaluated. The doctors there came back and told us that they did not feel that she was on the spectrum but that she was “at risk” for ADHD. At risk? Was there some way to stave off the ill effects of the Attention Deficit/Hyperactive Disorder that was threatening her (bitterness and sarcasm intended)? A friend of mine rejoiced at this news that Martha was “off” the spectrum and while I did appreciate that this was good news, that obviously Martha’s development had progressed in such a way that over four years’ time her particular autistic-like behaviors were mild enough not to immediately indicate an ASD diagnosis, the idea that kids can move “on” and “off” the spectrum just doesn’t sit well with me. Is this a fluid disorder where we can be more autistic one day, less another? I think what bothered me the most was that for four years I had come to understand my daughter as a child with particular behaviors, strengths and deficits that, for the most part, describe the disorder known as autism. Many of her most difficult behaviors still existed so if they were not part of the autism spectrum, what were they?

Martha did not learn to talk until shortly before her third birthday. Around the time she was diagnosed she began using the ASL sign for “more,” which we had been trying to teach her for almost a year without one hint of success. Once she learned it, “more” served us well. It constituted a major part of her communication in addition to laughter (happy) and crying (sad, mad, frustrated, hungry, tired, sick, none of the above, all of the above, and you may never know which one). We’d ask a yes/no question and the sign for more meant yes. No reaction or fussing meant no. More got her food, drink, picked up, put down, carried around, a song, a video, any number of things. But you can see where more, a happy face or a sad face can leave a lot of room for miscommunication; a lot of her self-expression was left to our interpretation. On more occasions than I ever care to remember, I sat there totally and utterly perplexed as to what she wanted or what she was feeling. How can I fix something if I don’t know what’s wrong?

Finally at age three the words started to come and let me tell you, they have not stopped. Martha talks endlessly. The sound of silence seems almost intolerable to her, like she doesn’t understand it and she desperately wants some noise to focus on, to bring meaning to her world. She became a much happier child as she learned to communicate, as she connected with people, got her needs met, expressed herself, learned about new ideas. She had some power over the world.

As I finished writing this today, I had two autism-related items come to my attention, both of which I think are brilliant. One is a blog entry by the incredibly talented John Elder Robison whose book Look Me in the Eye tells of his growing up with Asperger’s Syndrome and how he navigated the world without knowing until he was in his 40s that he was affected by autism. The other is a video my sister emailed to me about Carly Fleischmann, a 14-year old girl who appeared to be profoundly autistic and cognitively impaired but when she began typing on a computer keyboard at age 11 she was able to communicate with the world about what it feels like to live inside her body, why she behaves as she does and how she wants to be like everyone else. If you have a moment, you should take a look at them. The fact that I was already writing about autism when these two items were delivered to my computer screen leads me to believe that I am supposed to be talking about this subject right now. I like when fate speaks to me, it makes my life so much easier.

That’s all I have for now, but there is always much more to come on this topic.

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