When we started our home program, we were greatly motivated by the Young Autism Project research.
My husband, a scientist, and I, a reporter, read the research in detail. In fact, I read quite often......
"The present article reports a behavioral-intervention project (begun in 1970) that sought to maximize behavioral treatment gains by treating autistic children during most of their waking hours for many years. Treatment included all significant persons in all significant environments. Furthermore, the project focused on very young autistic children (below the age of 4 years) because it was assumed that younger children would be less likely to discriminate between environments and therefore more likely to generalize and to maintain their treatment gains. Finally, it was assumed that it would be easier to successfully mainstream a very young autistic child into preschool than it would be to mainstream an older autistic child into primary school.
It may be helpful to hypothesize an outcome of the present study from a developmental or learning point of view. One may assume that normal children learn from their everyday environments most of their waking hours. Autistic children, conversely, do not learn from similar environments. We hypothesized that construction of a special, intense, and comprehensive learning environment for very young autistic children would allow some of them to catch up with their normal peers by first grade....."
We started our program when our son was about 2 years 4 months. We knew we needed that early start.
This section made an impression:
"Subjects were assigned to one of the two groups: an intensive-treatment experimental group (n-19) that received more than 40 hours of one-to-one treatment per week, or the minimal-treatment Control Group I (n-19) that received 10 hours or less of one-to-one treatment per week. "
After reading the outcome, we knew we had to get our hours up as soon as our son's naps, etc. would allow. I question now how we used some of those hours, but the times, every waking minute engaged, was critical.
We lived and breathed the following....
"All subjects who went on to a normal first grade reduced in treatment from the 40 hours per week characteristic of the first 2 years to 10 hr or less per week during kindergarten. After a subject had started first grade, the project maintained a minimal (at most) consultant relationship with some families. In two cases, this consultation and the subsequent correction of the problem behaviors were judged to be essential in maintaining treatment gains."
When we could see our son was not recovering in the time frame, that last sentence...that last sentence helped to keep us going....
"Subjects who did not recover in the experimental group received 40 hr per week of one-to-one treatment for more than 6 years (more than 14,000 hr of one-to-one treatment), with some improvement shown each year but with only 1 subject recovering....."
Over the years, I continue to tell people not to give up...not to label their children or decide their future based on what they can do by the time they are 4 or 7 or 12 or older. Keep working; hang in there. Every day is a struggle and no one understands. Mostly no one. But we parents do. You are not alone....
My heart is with you,
Katherine Lee