The theories regarding autism have been based on observation
of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited
independence in selfcare. I have limited eye contact. I have flat affect often.
I can’t express my ideas verbally. I have poor fine motor control. I have
impaired initiation. I have impaired gross motor control. I have difficulty
controlling intense emotions. I have impulse control challenges and self stimulatory behavior.
Whew. When I write that it sounds pretty bad, but I function
adequately in this world. I am now 17 and I am a fulltime high school student
in a general education program. I am in Honors Chemistry, Honors US History and
Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight
As. I work out with a trainer 2 or 3 times a week to get fit. I study piano. I
hike, cook, and help take care of a horse. I am invited to speak at universities and
autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.
I say this, not to brag, but to let you know that people
like me, with severe autism, who act weirdly and who can’t speak, are not less
human, as Dr. Lovaas suggested, and are not doomed to live lives of rudimentary
information and bored isolation.( “You have a person in a physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense,” the late Ivar Lovaas, a UCLA researcher, said in a 1974 interview with Psychology Today).
I communicate by typing on an iPad with an app that has both
word prediction and voice output. I also
communicate by using good, old-fashioned letterboard pointing. If I had
not been taught to point to letters or to type without tactile support, many
people would never have realized that my mind was intact.
My childhood was not easy because I had no means to
communicate at all, despite my 40 hours a week of intensive ABA therapy. I
pointed to flashcards and I touched my nose, but I had no means to convey that
I thought deeply, understood everything, but was locked internally.
Meticulously collected data showed my incorrect answers to flashcard drills,
but the limitations of theory are in the interpretations.
My mistakes were proof to my instructors of my lack of
comprehension or intelligence, so we did the same boring, baby lessons year
after boring year. How I dreamed of being able to communicate the truth then to
my instructors and my family too, but I had no way to express my ideas. All
they gave me was the ability to request foods and basic needs.
Here is what I would have told them if I could have when I
was small. My body isn’t under my mind’s complete control. I know the right
answer to these thrilling flashcards, unfortunately my hand isn’t fully under
my control either. My body is often ignoring my thoughts. I look at my
flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly
differentiate between tree, house, boy and whatever cards you have arrayed, my
hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!”
It goes to house. Your notes say, “Ido is frustrated in session today.” Yes,
frustration often occurs when you can’t show your intelligence and neurological
forces impede communication between mind and body and experts then conclude that
you are not cognitively processing human speech.
In my childhood I feared I would remain stuck forever in
this horrible trap, but I was truly fortunate to be freed when I was 7 when my
mother realized my mind was intact, and both my parents searched to find a way
to help me communicate without tactile support.
Thousands of autistic people like me live life in isolation
and loneliness, denied education, condemned to baby talk and high fives, and
never able to express a thought. The price of assuming that nonverbal people
with autism have impaired thinking is a high one to families and to people who
live in solitary confinement within their own bodies. It is high time
professionals rethought their theories.
