Wednesday, May 18, 2011

IMFAR 2011: What Parents Expect For Their Autistic Children, High School and Beyond

As Peter Bell (Autism Speaks' executive vice president for programs and services) reported at the Autism Speaks Blog,
While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives.
John Elder Robison reported
This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags
One such scientist/presenter/stakeholder was Matthew J. Carey PhD, known to many as "Sullivan", who blogs at LeftBrain/RightBrain. While Matt's day-to-day research has to do with computer hardware, his avocation is writing about autism science. One area in which he excels is analyzing published papers and public datasets bearing on autism.

For the 2011 IMFAR meeting, Matt submitted an abstract on the data presented by the National Household Education Surveys Program (NHES)
The NHES surveys cover learning at all ages, from early childhood to school age through adulthood. The most recent data collection in 2007 consisted of two surveys: Parent and Family Involvement in Education and School Readiness.
Matt analyzed the data with two questions in mind:
  1. To compare the educational placements and perceived educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
  2. Explore parent expectations for the future of their ASD student(s).
Keep in mind that the data collection happened in 2007 -- the oldest children in that survey were born in 1988.

The underlying NHES survey did not appear to make distinctions among students on the autism spectrum, specifically along the language dimension. What I am trying to say is that ASD students who have more age-appropriate expressive oral and written language skills may have different educational outcomes than students whose oral and written language skills are not as robust.

In looking over the abstract, two things struck me:
  • Children on the autism spectrum were nearly twice as likely to be home schooled (5.5% vs. 2.9%)
  • Over 6% of parents did not expect their ASD student to earn a high school diploma, compared tojust 0.6% of non-ASD parents .
There was another presentation by Taylor and Shattuck,The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD, which was drawn from the National Longitudinal Transition Study-2 (NLTS2)

NLTS2 involves a large, nationally representative sample of students receiving special education who were ages 13 through 16 and in at least 7th grade on December 1, 2000. The oldest youth will be 26 at the time of final data collection. Statistical summaries generated from NLTS2 will generalize to students receiving special education nationally in this age group, to each of the 12 federal special education disability categories, and to each single-year age cohort.


As our children with ASD become of age, it will be interesting (a deep understatement) to see how their educational and employment outcomes change over time.

(A more complete account of Carey's research has been posted at LeftBrain/RightBrain "Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey")