The Autism Society Event and Education Recordings Archive

How can parents and professionals be sure that IEP or transition goals will produce meaningful outcomes for students with ASD? One way to ensure the relevance of student programming is through the lens of social validity. This workshop will examine criteria for determining the relevance or social desirability of individual and programmatic outcomes, matching student needs to measurable benchmarks, evaluating progress, changing program content and the benefits of actively incorporating social validity in student IEP or transition goals. Health care experts estimate that individuals with Autism Spectrum Disorders (ASD) cost U.S. society more than $35 billion annually (Ganz, 2006). According to Dr. Michael Ganz, of the Harvard School of Public Health in Boston, that $35 billion dollars breaks down to a lifetime cost of roughly $3.2 million for every three-year-old with an ASD born in the year 2000. This same report also indicates that more than half of that expense can be attributed to lost productivity and other non-medical expenses in adulthood. These predictions are supported in part by a review of current research that shows that persons with ASD’s have ongoing difficulty finding and maintaining employment (Frith, 2004; Goode, Rutter, & Howlin, 1994; Howlin, 2000; Lord & Venter, 1992; Nesbitt, 2000).  One way of improving outcomes for individuals with ASD is to critically examine goals and transition programming for their social validity and relevance to adult life.
It is no secret that the majority of young people with ASD require varying degrees of support services to progress developmentally. Parents must find “qualified” services providers that can address specific needs while professionals are charged with employing appropriate, evidence-based interventions that match the identified needs. Through all of this, the thoughtful selection of goals is a critical step that defines the process. From a broad or global point of view, the goals of a treatment plan or Individualized Education Plan (IEP) paint a picture of the desired future skill profile of the child. More specifically, goals dictate what actions must occur in the present in order for those skills to be realized in the future.            In an effort to determine what desired outcomes influence goal selection, Fox and Emerson, (2001), interviewed various stakeholder groups such as parents, support workers, nurses, managers, clinical psychologists, adults with disabilities and psychiatrists. What they found was that reducing the severity of challenging behaviors was identified as the most important outcome by the majority of the professionals and only some of the parents who responded. Other outcomes included improved willingness of staff to work with the individual, improved interpersonal environment at home and parents possessing a better understanding of their child’s behaviors.            Conversely, parents and adults with disabilities identified outcomes such as increased number of friendships, improved ability to stay in the community, others changing their perceptions of the individual and the person having greater control and being more empowered. These results clearly show at least two paths toward future skill development. One that is centered on the development of behavioral conformity for the individual and another that is focused on improved independence and increased social competence.            So what principles should we employ when selecting these goals? How can we be sure that the direction we choose will facilitate positively oriented long-term growth? One possible answer can be found in the concept of social validity. Carpenter, Bloom and Boat, (1999) suggest that a socially valid goal would improve the quality of life. They go on to say that socially valid goals also result in higher levels of self-esteem, self-determination, individual empowerment, and joy among recipients. Kennedy, (2002) suggests the following questions be used to determine the social validity of a goal.               1. Is the behavior change demonstrated in typical settings? 2. Does the intervention promote movement into the least restrictive environment?
3. Is the intervention conducted by families and/or school and community personnel?
4. Is the person's entire day/week impacted by the intervention?
5. Is the intervention maintained over time?
6. Is the intervention enabling and skill building?
7. Is the recipient of the intervention happier?
8. Do secondary consumers, (family members, friends, etc.) value the intervention?
9. Will taxpayers view the intervention as worthy of public funding?         Take for example the 6-year-old with Autistic Disorder whose IEP goals include learning 25 concepts for size and quantity when he is severely challenged by basic functional communication issues. The question you would have to ask yourself at this point is whether or not spending the time and resources to have a child learn such a volume of concepts for size will improve his ability to communicate effectively and get his needs met. In other words, which of these skills will provide long-term benefits for more areas of this child’s development?          Another example would be a 16-year-old with Asperger Syndrome who is required to complete a Driver Education program in order to graduate from high school. While successful navigation through the community is critical to independence as an adult, would alternatives such as mass transportation be more realistic and useful? Or perhaps, navigation skills need to be placed on hold until this teen has developed enough problem solving and self-regulation skills that allow him to stay calm and make his own determination about his transportation needs as he becomes more independent.         The workshop will discuss how NHS Autism Schools used the results of a survey of stakeholders across the state of Pennsylvania to determine the social validity of desired outcomes and direct goal selection and transition programming for students. Specific topics will include; the process of determining social validity of IEP or transition goals, matching goal selection to student needs, tracking student progress through data collection and evaluating data to determine student progress toward socially validated goals.

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