This is the second in a series of reports on local FEAT-of-Oregon families' experiences with autism. This report is not an endorsement of specific treatments: first, every child is different, and second, FEAT judges treatments by data-based scientific studies.
I knew the day Susan (not her real name) was born that something was wrong. She arched her back and didn't respond to my love and warmth. At nine months she was still unable to roll over, did not smile and react to others and never explored her surroundings or toys. We visited a neurologist who confirmed low muscle tone and lack of normal leg and reach reflexes.... but it was too early to diagnose or treat her.
At 18 months I noticed Susan engaging in ritualistic behaviors which seemed to take up most of her time. Close "inspection" of her toys and rocking, leading me to think she was "dancing". I made the excuse that she was an analytical child, self-contained in her studies of objects and music.
At 36 months I decided to put Susan in a structured preschool setting hoping to "wake her up". She had no language and lived for "sameness" in her everyday routines. I did not expect my analytical child to be "last in class in everything" as her preschool teacher put it. She recommended an evaluation through CDRC.
Finally, at 50 months, Susan had diagnoses of mild autism, severe global dyspraxia, severe auditory processing, and severe language delay. We were shocked since our pediatrician told us "she is just taking her time." Determined to face this "autism" head on I tried TEACCH, as the local school district recommended. Susan responded well, but after 6 months I decided TEACCH wasn't aiming high enough.
I researched and found "behavior modification" and "Lovaas". The research was impressive and we immediately started Susan on a program of 20 hrs/week ABA, 10 hrs/week PT and 5 hrs/week SI. In addition I kept a very structured household in order to keep Susan engaged every waking hour using incidental trials (PRT). I did the programming myself, drawing on resources from ABA programs at universities in Texas and Florida, the Lovaas program and PCDI. Much of the therapy was delivered by practicum students from OSU. It took tons of legwork, but greatly reduced the cost of Susan's program. Later these ties with OSU resulted in aids for preschool and the first year of kindergarten.
I can't stress how much Susan gained from this intensive comprehensive approach. She blossomed overnight and soon was learning like a typical child. Although she needed to repeat Kindergarten, by first grade she was just another ordinary kid.
What I recommend to others:
Susan's program cost us about $3,000/year. This does not include all the time and energy spent developing, researching and organizing Susan's program which included planning a practicum at OSU for her therapists. I was lucky to be a mom who could stay home and do this.
Comments on Susan's Story from our Board of Advisors:
Sandra L. Harris, Ph.D.: Susan was blessed with creative parents who were able to draw on very inexpensive resources to create her program. That was wonderful for her, but not every family is so resourceful. We need mechanisms to ensure that every child with autism has Susan's opportunities.
Tristram Smith, Ph.D.: A happy ending! Consistent with the story, preliminary evidence from Svein Eikeseth, Ph.D., indicates that many children who begin the UCLA Program at age 4 or 5 make major gains. One caution: Having a child "engaged in appropriate activities at all times" is extremely difficult, whether or not the child has autism. Instead, parents and teachers may need to teach leisure skills, then gradually increase the time the child is asked to use them.