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Portrait of Autism

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Hannah's Story: Just one of many

Hannah was such a beautiful, cuddly baby that we never dreamed anything could be wrong. We did notice that she liked playing by herself, but we felt lucky that she "entertained herself," unlike her more-demanding siblings.

By Hannah's second birthday, she had "lost" many of her words, and tantrummed at the slightest change or upset. We blamed her troubles on our recent cross-country move, certain that she would soon get back to normal.

But Hannah didn't get back to normal. She learned a few new words, but continued to "lose" old ones. She used her few words to make demands, never to make conversations. She ignored most people, as if deaf-but hearing tests ruled this out. She did seem to like our hugs and kisses but rarely returned them.

Shortly before Hannah turned three, we enrolled her in a self-contained TEACCH classroom, only to watch her fall even further behind. Now 4 years old, her language was not even that of a two year old, and she threw tantrums if we didn't repeat certain words back to her. Just after her fourth birthday, a clinical psychologist diagnosed her with autism.

The psychologist gently told us to expect Hannah to continue falling further and further behind. We were devastated—our child seemed forever lost to us. And when she started slapping herself, we could not bear to think what else the future might bring.

Some weeks later, I read Catherine Maurice's "Let Me Hear Your Voice," and Lovaas' research papers. Hope! We immediately stopped repeating Hannah's words back to her. After two miserable days of nonstop crying, she finally gave up and accepted this change. We could only afford 10 hours per week of ABA through Project P.A.C.E., but we did another 2-4 hours ourselves every day, and constantly tried to engage her attention. Because Hannah loved "The Lion King," I must have danced with her to "Can You Feel the Love Tonight?" a hundred times, its questions tugging at my heart.

We were afraid that we had started too late, but Hannah's response to ABA was amazing. At age 6, she attended morning kindergarten and afternoon daycare, all without aides or accommodations. Her language skills are in the normal range, she plays soccer on a recreational-league kindergarten team, and best of all, she is even considered an "articulate, outgoing" child!

Is Hannah "recovered?" She still has one hour of speech/language per week, and we continue to work on maintaining eye contact, eating a greater variety of foods, and observing social boundaries. However, she has friends, has no behavior problems, is reading and writing, and most important, is happy and connected. I feel that we have found our "lost" child.

Mike's Story

Our son Mike seemed to develop normally except in the area language. As an infant, he experienced numerous ear infections so finally, when he was two, we had tubes placed in his ears so we knew for sure he could hear. The ENT made an innocent chart note suspecting Mike had autism but failed to mention this to us. Our family practice doctor was left with the task. Knowing very little about autism, she referred us to the local university medical center for a complete evaluation. The experiences and the results of the test were frightening. After an EEG by the neurologist, language testing from a speech pathologist, and observations by a child psychiatrist we were told Mike was mildly autistic and that there was very little that could be done to help him. We were given a photo-copied list of 10 different treatment options to try with our son. The psychiatrist did not indicate one intervention would work any better than the next nor did he volunteer to oversee his treatment. Mike's language scores before intervention at the age of 30 months were 10 months expressive and 10 months receptive on the Peabody Picture Vocabulary Test (PPVT). We chose not to accept the "there is nothing you can do attitude" and began seeking information for ways to help our son.

Unfortunately, most books about autism (prior to 1995) present a bleak picture of mentally retarded adults who have few social skills and cannot communicate very well. After our experience with ABA, we believe this picture is completely inaccurate. Our family practice doctor had a copy of the 1987 Lovaas research paper in her autism information file and a brochure from a local provider of behavioral therapy called Project P.A.C.E. We contacted Project P.A.C.E. and began an intensive behavioral program designed to teach Mike language and social skills. It quickly became apparent that autism is a very severe disorder and that the behavioral component of the disorder could not be ignored.

Mike was an intelligent 2.6 year old who could count to 30 in ascending and descending order, who knew alphabet letters and their correct order and who could look at shapes and place them correctly in a shape sorter without physically trying them first. However, it took us 6 weeks at approx. 20 hours a week, to receptively teach him 4 object labels: video, bottle, cup and shoe. He could expressively label thembefore he could receptively point to them or give them to you. Learning language seemed to be very difficult for him. Furthermore, he did not enjoy people (therapists) making demands of him. Like many children with autism, he greatly preferred doing what he wanted, not what someone else demanded, even though he was well rewarded for his efforts. Three months into his program we increased his time to 30 hours a week of one-on-one therapy. We believed he needed this intensity to build his language skills.

By age three, Mike began to make very rapid progress. We documented his progress using standardized tests. His language skills were again measured using the PPVT and after 8 months of his ABA program his receptive vocabulary was equivalent to a 2.5 year old (His chronological age was 3.2). He had gained more than a year of language in 8 months. By the time he was 4, he tested in the low average range on the PPVT. He took his final language test when he was 5. On the CELF (Clinical Evaluation of Language Fundamentals) he scored normal or above on all the subtests and both his receptive and expressive language scores were one standard deviation above the mean. As a final standardized measure of progress, Mike was given the Wechsler Preschool and Primary Scales of Intelligence-Revised (WPPSI-R). He scored in the normal range or above in all the subtests and his verbal and non-verbal IQ were equally matched. We were pleased to see that, contrary to professional's predictions, Mike could process abstract information.

Scoring well on standardized tests is great but it does not necessarily indicate how well a child functions in day to day life such as noisy, chaotic, school settings. Mike is doing well. He is currently fully integrated into a Kindergarten setting with no assistance, no behavioral problems and no Autism or PDD label. He seems to be popular with his classmates readily making friends. Mike's ABA program was essential to his tremendous growth and progress. Without completing his two year ABA program he would not be the child he is today.