Sunday, August 26, 2012

Autism diaries XXXVII: stepping outside yourself

J knows that he's different: he's deaf and autistic. To him, deafess means hearing through a cochlear implant, never having motion sickness (because none of the chambers of his inner ear communicate with his brain), and (incidentally) knowing sign language. Autism, meanwhile, means being obsessed with Ceiling Fans and the Number Two to the point of partial or total obliviousness to the other things around him.

He knows he's not the only deaf, autistic person in the world, and I've shown him some of the books on my shelves that were written by people with autism. Pretending to be Normal by Liane Holliday Willey stands out in particular, partly because, as I've told him, in order to get a job you need to pretend to be normal.

Every once in a while, he echoes this back. "Is that right? To get hired, I need to pretend to be normal." Or, "To pass my driver's test, I need to pretend to be normal." Recently while saying this his face flashed in the delight of a new insight. "Is that right?" he rephrased at higher volume, "To pass my driver's test I need to hide myself." Yes, indeed, pretending to be normal means hiding yourself. And if anyone else but him had voiced this conclusion, it would have sounded profoundly sad. But, for J, the thrill of the epiphany overrode any inkling of dismay.

Indeed, there probably never was any dismay to begin with.

Nor is there any about deafness. The cochlear implant lets him hear what he needs to, and what interests him, including sounds of passengers throwing up in the bathroom of the ferry boat we took several years ago during the tail end of Hurricane Bill. Nearly everyone on board was sick except for him, and J knew he had his nonfunctioning inner ears to thank for this.

J also knows that the cochlear implant gives him the auditory equivalent of a lower-than-normal resolution image; a couple of nights ago he wondered for the first time about qualitative differences in sound perception. "Maybe things sound different to me than to you," he proposed.

"But," he added, "high notes still sound smooth and low notes rough. And high notes still are light and low notes dark." Somehow the bizarre universality of this sound-sight synesthesia was apparent even to deaf, autistic J.


Nancy Bea Miller said...


Happy Elf Mom said...

J will be able to be part of the autistic world, the deaf world, and the "normal" world.

We all need to pretend to be friendly, normal or whatever a lot of the time! Just the way it is. :)