An Examination of School Preparation, Family Involvement and Outcomes

It is estimated that by 2013 more than 4000 teenagers with autism will reach adulthood in California and by 2018 the state Department of Developmental Services will be serving more than 19,000 adults on the spectrum (Cavagnaro, 2008). It is critical that appropriate transition programming and supports be implemented now to ensure that these young people have the greatest chance at success and independence as adults.

This need was echoed recently at the National Town Hall meeting that was organized as part of the Advancing Futures for Adults with Autism (AFAA) initiative. At this meeting over 1200 participants across 15 different satellite sites developed a common agenda that focused on policy for adults with autism. One of the areas emphasized was the critical and urgent need for increased transition services for youth on the spectrum (National Town Hall Executive Summary, 2010).

Dr. Bonnie Kraemer, an Associate Professor of Special Education at San Diego State University, has an ongoing study examining the period of transition for young adults with ASD and their families, jointly funded by San Diego State and NFAR. Specifically, she is examining how youth with ASD are prepared to leave the school system; the post-school outcomes that are achieved by youth with ASD; how families are involved in the transition process; and how families are affected.

Data is collected through in-person interviews with families (primarily mothers) with transition-age sons/daughters with ASD. If appropriate, the young person with ASD also participates in the interview. To date, 70 families across San Diego County have been interviewed. The youth are 16 to 25 years old (mean age 19).  The majority of youth are male (87%) and Caucasian (84%). The sample reflects the range of the spectrum, with 25% classified as having HFA or Asperger syndrome. Thirty-six percent had exited the school system at the time of the interview.

Results indicate that 31% percent of the sample of youth received their high school diploma or are currently diploma bound. Of those young adults who have graduated or aged out of the school system, 32% are attending post-secondary education (most taking one or two classes at a community college). Nearly 25% are working in the community in competitive or supported employment. 20% are attending a sheltered employment or adult program and 23% don’t have any formal day activities. A majority of families (53%) feel they do not have knowledge of adult services/programming options and that services are limited. Parent involvement in transition and views of transition success are related to youth exit status, with parents of youth who have exited school less satisfied and viewing transition as less successful.

Involving parents in the transition planning of their child is considered best practice (Kim & Turnbull, 2004) and allows for them to have more control during this critical period of the life span. The majority of parents frequently worry about transition, with 60% of respondents reporting that worries affect their personal well being.

When compared to a sample of families with transition-age sons/daughters with intellectual disability but not autism, the current sample of families reported increased levels of stress in multiple domain areas (social, financial, marriage). These families overwhelmingly report a desire to be actively involved in their sons/daughters life planning, with nearly 50% of the families wanting more involvement than they currently have. These findings clearly support the need for increased parent involvement in transition planning and the need to start planning early.

Families for the current project are still needed, as interviews are ongoing. Families that are culturally and linguistically diverse are particularly sought. Interested families can contact Dr. Kraemer at 619-594-3492 or via email.

Sincere thanks to the National Foundation for Autism Research and San Diego Families for supporting this work.