A look back at those tender pre diagnosis days when I could have used THIS book:
An Excerpt from A REGULAR GUY: GROWING UP WITH AUTISM
That evening, Peter and I sat at the dining room table with a dictionary, a stack of encyclopedias, and an old college textbook on child development. It was time to do a little research.
“Echolalia: ech·o·la·li·a (?k’?-l?‘l?-?) 1. Psychiatry The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism.”
I flipped open my World Book encyclopedia to autism, my heart pounding, and read out loud to Peter.
“A rare, severe developmental disorder that begins before four years of age. The condition appears as a group of symptoms, the most notable of which is the inability to relate socially to other people. True autism occurs in one child in every 700. Boys are more commonly affected than girls. There is no known cure for the condition. The term autistic or autistic like is sometimes used to describe people with severe emotional problems that resemble autism.”
There was more, but I couldn’t read it.
“Don’t worry, Laura,” said Peter, squeezing my hand. “This is just worst-case scenario stuff. There is no way Matthew is Pervasiveautistic.”
I had first heard the word “autism” when my sixth-grade class went to visit Agnews Developmental Center in Santa Clara, California, where children our age lived because they were emotionally disturbed, mentally ill, or developmentally disabled. I’m sure that the reason for the field trip was to educate us and infuse us with compassion, but instead the trip had a freak-show, haunted-house atmosphere. Students stared and pointed, and teachers seemed unsure, frightened.
During the tour I noticed a tall, handsome boy with a brown bowl haircut rocking in a doorway, mumbling quietly to himself and waving his fingers. He had high cheekbones and clear blue eyes, and he looked a little older than my twelve years, though it was hard to tell because his face was void of expression. It was spooky.
“He’s so handsome,” I whispered to the tour guide, “but it’s like he’s looking at me but not seeing me. What’s wrong with him?”
“He’s autistic,” she said. “People with autism are locked in their own world. They have no emotions, and they don’t like to be touched.”
I overheard one of the mothers who helped supervise the field trip whisper to another, “I hear it’s because they have refrigerator mothers—you know, those women who can’t love their children.”
That would never be me.
Years later, in 1988, the movie Rain Man was released, when Matthew was one and a half. In the movie Dustin Hoffman plays Raymond, a severely autistic man, obsessed with routine, who rocks and screams when his schedule is disrupted. He has difficulty making eye contact and mumbles amazing facts and figures that have no practical value. The character became the definition of autism, and everyone was talking about it when it first came out.
“Isn’t it amazing that autistic people are so brilliant with facts and numbers,” people would say, “but so limited otherwise, and so odd.”
Few understood that autism was a wide spectrum disorder, and that not all autistic people are alike. So when Peter and I met with the child psychologist who did testing for a consultation, even before we were seated, I blurted out that two professionals had used the word echolalia.
“Does that mean he’s autistic?” I asked.
“Echolalia is only one symptom of autism. A person with echolalia alone is not necessarily autistic.”
“Well, that’s a relief!” I said with a sigh.
“We’ve been a couple of wrecks,” Peter said, taking my hand. “It’s so hard not to jump to conclusions!”
Dr. Davies, a stoic English woman in her sixties, gave us no indication that it was time to celebrate as she looked over the speech therapist’s report. She asked us about pregnancy and birth (normal, normal) and asked us to list the ages of achievement of important milestones. I rattled them off like a contestant on a quiz show.
“I think she’s sugarcoating them a little,” Peter said, and I blushed.
“Oh, that’s what we mothers do,” said Dr. Davies with a slight smile, her eyes connecting briefly with mine. She understood.
Dr. Davies explained that she would use the results from two different tests, the Stanford-Binet Intelligence Scale (SB) and the Bayley Scales of Infant Development (BSID), to get the best reading of Matthew’s stage of development. The results would also highlight the areas where Matthew could use remediation.
The testing was done over a two-day period, and each day, Matthew clung to me for a few minutes before allowing Dr. Davies to take his hand and lead him into her office.
“No refrigerator mother here!” I laughed nervously, wiping tears away as I turned over my boy for this clinical evaluation.
“We’ll be about 45 minutes,” she said with that slight sympathetic smile.
Peter and I met Dr. Davies a final time to go over the test results.
“He is not retarded, and he is not autistic,” she proclaimed. “His most obvious problem is that he has a serious language delay, but he also seems to have an overall cognitive delay. But this is secondary to his language delay, and no final diagnosis can be made until he works with a speech and language therapist.”
“So do you think that once he gets speech therapy, the cognitive part will come up?” I asked hopefully. “Do you think this is something he can overcome?”
Peter gave me a “don’t put words in her mouth” look.
“I don’t have a crystal ball. But extensive work with a speech and language therapist, and placement in a remedial preschool, is crucial.”
“I heard that you don’t see children beyond evaluation, but do you think he would benefit from seeing someone else?” I asked. “We have a family friend, Brian Hoffman, who has offered to see him. Do you know him?”
“Yes, Dr. Hoffman is wonderful,” she said, “but there are many in this area who treat children with developmental disabilities as well.”
Dr. Davies handed me a sheet with diagnostic information for our insurance and wished us luck.
Did she say disability? What happened to delay?
“What did you make of all that?” Peter asked as we drove home. He sounded discouraged.
“What did I make of it? I think it’s good news! We’ll pour on the speech therapy—that should get him going—and then if he needs more of a boost, we’ll get him to a child psychologist. I’ll bet we can turn things around.”
“Laura, she never said anything about things getting better. At the very least, it’s obvious that he has some major learning disability. She recommended some pretty heavy-duty stuff. This is depressing.”
I replied with a sigh.
“Boy, I’d do anything to get Matthew on track,” said Peter.
“And we will. Matthew sure is lucky.”
Peter turned on some music. I unfolded the piece of paper that Dr. Davies had given me and read it silently. “Diagnosis: DSM-111 R, 1315.31 Developmental expressive language disorder; 315.31 Developmental receptive language disorder; 299.80 Pervasive developmental disorder, not otherwise specified. The latter diagnosis is descriptive of Matthew at the time of the examination. This may well be revised after he has some language therapy.”
“What does it say?” asked Peter.
“Just what she said,” I sighed. “We’ll get him the therapy he needs. I’m tired of talking about it.”
I closed my overflowing eyes and turned to the window, keeping my fear to myself.