When and how autism initially develops in an affected child seems to give clues to later outcome. Additionally, IQ measures upon initial diagnoses provide an indication of what to expect later on.
Kennedy Krieger has provided new insights into the implication of Autism Onset Patterns (article). Utilizing data from custom questionnaires and standardized rating scales completed by 2720 parents of autism affected individuals, the researchers have provided a kind of crystal ball as far as creating a tool for forecasting the most probable long term educative and medical needs. The result is published in the Journal of Autism and Developmental Disorder. (Abstract)
The Autism Onset Pattern study indicates that the overall eventual outcome for those children who experience regression (as opposed to plateau, or no loss and no plateau) was that of greater severity of autism symptoms.
• Regression (n=44%): A loss of previously acquired social, communication or cognitive skills prior to 36 months
• Plateau (n=17%): Display of only mild developmental delays until the child experiences a gradual to abrupt developmental halt that restricts further advancement of skills
• No Loss and No Plateau (n=39%): Display of early warning signs of autism spectrum disorders without loss or plateau (From Krieger Study)
The percentages seem to indicate that, if 1 in 110 are currently found to be somewhere in the autism spectrum, only 44% of that 110 have the type of severity that will involve prohibitive or significant costs. This information might help schools and communities to plan.
IQ during the earliest stages in autism indicates later outcome as well. According to Dr. James Copeland, if two children present with the same degree of atypicality, but one has an IQ average of 100 and the other 40 to 55, the atypicality will shrink for the child with the higher IQ but not for the child with the lower IQ - regardless of the type of intervention.
...There have been at least ten long-term follow-up studies of persons with ASD, going back nearly 40 years and totalling over 1000 subjects, that bear out this fact. In 1976, one researcher correctly concluded "In terms of scholastic progress, social competence, and work opportunities, the child's IQ level is as influential as the presence of autism."(Copeland Article)
IQ represented controversy during Lovaas' early involvement in intense earliest intervention study. His results were questioned because the term recovery was used to describe children whose measured ability fell into the average range (upon initiation of programming) and (also to those) who were being educated within mainstream schools. Children with higher functioning autism could well achieve such outcomes via other interventions, and (furthermore) a follow-up of some of the recovered children at age 13 revealed a continuation of significant behavioral issues. (M.J. Conner Notes)
Completion of study into earliest intervention from ESDM showed that 71% of children in a control group remained within the autism spectrum after programming, and 56% of the children in the ESDM group remained. The biggest advantage in the programming studied, was that of improved language development and adaptive behavior. Scores on repetitive behavior showed no improvement for either group, and that is a bit confusing when one considers that some children did not remain within the autism spectrum after the study (but none showed improvement in repetitive behavior). Children as young as eighteen months were included in the study.
JAPPA conclusions with regard to the ESDM study are that ...Intensive intervention, using the Early Start Denver Model, in children with autistic disorder or pervasive developmental disorder may improve early learning, especially language development, and adaptive behavior after 2 years of treatment. This study did not find a benefit of treatment on behavior and did not report on the long-term benefits, if any, of the intervention.
Long term outcome seems a sticking point, especially when one considers the observations about recovered children in the Loovas study. At age 13 recovered children had significant behavioral issues. Will ESDM researchers continue to track ongoing outcome of those children involved in their initial study?
The Autism Onset Pattern study provides insight through the hindsight of parent's who have been through what many parents are only beginning to go through. Consideration of autism onset patterns in diagnostic labeling might give more purpose to that label. A statistic like 1 in 110 is hardly useful when one considers the vast spectrum that is being represented; so many differing levels of intelligence and so many differing involvements in the autistic characteristics. The current autism spectrum label is a little too wide to be of value for purposes of forecasting future needs.