People tend to have fairly stereotypical ideas about what autism looks like. Even doctors can get stuck in a rut, like the first psych I took Kender to who said an autistic child would never explore a room or play games or show affection. But autism has many faces. In fact, it wears a different face for every child. This is the face it wears for Kender.
Kender’s blindness and pain delays have compounded the effects of his autism and made it harder to diagnose. There has long been some difficulty in teasing apart the blindness and autism, and many blind children have been diagnosed mistakenly with autism when in fact they were just showing some effects of blindness, or “blindisms.” The Texas School for the Blind and Visually Impaired (TSBVI) has some of the best literature I have found on differential diagnosis for autism in blind children, and their library was a major resource for Kender’s diagnosing psych and her colleagues last year. I was rereading through their documents last week, and one set of differentials really stood out to me and have stuck in my mind ever since. Everything on this page just screams “Kender” more and more as he gets older, but the phrase “[treats others] like cause/effect toy” is what stuck in my head. That is often how I feel, especially at times when I am in pain or meditating or otherwise not willing or able to play with him right that second. His response is just what you’d see in a child whose toy’s batteries just stopped working. You can almost see him thinking, “Hmm…normally when I press that button, [x] happens. Let me check that again.” I know he loves me, but at moments like that I feel so much like a object.
As he grows, Kender is showing bigger and bigger differences between his behavior at home or with family, and his behavior around others. I don’t realize this until I post a video or comment, and people come back with exclamations about how they’ve never heard/seen him do that. He has opened up in his posture and his exploration since having his pain relieved, but he is still very quiet and non-interactive around others. At home, though, he talks a lot more. His language is very concrete and functional, lacking any hint of conversation or time awareness, but it is there. He is very echolalic, meaning he repeats what he hears, with amazing clarity sometimes. We have a long bedtime prayer that he has learned to recite, and he loves to sing songs that he hears. He can often repeat a song, with perfect pitch, after only hearing it once or twice. He also loves to copy the sounds of other things, not just people. He will stand at the kitchen counter hitting it and making noise to copy the sound of our Ninja blender, or the different pitches of the stand mixer at different speeds, or the gurgling of the coffee maker, or the humming of the microwave. He will make the sound of the phone ringing, pick it up and beep for hitting the buttons, and then appear to carry on an entire conversation based on the patterns he has heard others using on the phone. (At least once, this happened when the phone had actually been ringing, and the person on the other end was completely fooled for a while!)
Kender does not have a good sense of danger or of boundaries, which is why we are so desperate to get his service dog. Those who have not dealt with wandering autistic children have no idea how easily they can get away. Kender may not understand that he should stay in the house or yard, or with mommy, or that he shouldn’t go out into traffic, or he may not see a dropoff. He does know perfectly well how to figure things out, and so every time we come up with a way to keep him contained, he figures out a way to get around it. He is not stupid. Most autists, I think, are far from stupid. Those who do not know him may be deceived by his lack of communication and his odd development and behavior, but this boy is bright. So you can’t just childproof something like you would for a baby or toddler. It’s more like trying to contain a full-grown psychopath! Kender’s dog will be able to tether him when we are outside, and if he gets out of our home, the dog will be able to find him. Those two things alone will make the dog worth every penny of its $26,000 cost, never mind the other benefits and skills the dog will have.
We think that Kender will be high-functioning when he grows up. I still hope that he will live independently and raise a family of his own. He’s gotten a very rough start, with all his compounding issues, but I still look forward to the days when he will communicate better and we can really begin to talk to the amazing little boy I know is in there.