The Autism Society Event and Education Recordings Archive

Self-advocacy is an important and emerging field in the lives of people on the autism spectrum. We all use self-advocacy daily to communicate our needs, wants, and desires.  Self-advocacy is comprised of three components: 1) self-awareness of the need to advocate for something; 2) development of an advocacy plan; and 3) independent implementation of the plan. Independent use of self-advocacy tools is critical in ensuring that an individual’s needs are met, especially for people whose experiences have led them to defer their communications to others. 

Effective self-advocacy relies on three conditions being met. “I know I need to advocate for something, and I know exactly what it is,”  “I have self-advocacy tools,” and “I can initiate self-advocacy.”  These are the three Indicators of Self-Advocacy Skills Development: Self-Awareness, Competence, and Autonomy.   There are five Arenas of Self-Advocacy including sensory/environmental, social, disclosure, strengths and interests, and civil rights and entitlements.  For each of the Arenas the Indicators can be rated on a scale where 1 = highly adaptive, 2 = adaptive, and 3 = not adaptive.  The intersection between the Indicators and Arenas of Self-Advocacy comprise the ISA Indicator and Skills Assessment Survey, a rating system that pinpoints strengths and goals for the emerging self-advocate. 

The Integrated Self-Advocacy (ISA) Curriculum teaches self-advocacy skills and promotes spontaneous communication vocally or with a device.  The first step is completion of a Skills Assessment Survey.  This is followed by the individual conducting an ISA Sensory or Social Scan.  These tools narrow down the sensory or social situation into specific components.  For example, the Sensory Scan includes six categories, one for each sense. Each situation is rated on a scale of 1 (Unbearable) to 4 (Comfortable). The results of the Sensory or Social Scan are then translated into a workable Advocacy Plan. A variety of methods exist for teaching self-advocacy skills, with prototypes including Text, Text with Visual, Simple Visual, Visual Only, and the Graphic Organizer.  This variety of tools ensure that the ISA Curriculum is accessible to a wide range of users.  The individual then learns to use his or her preferred method of communication to autonomously initiate the Self-Advocacy Plan. 

The ISA Self-Advocacy Curriculum has been employed in over 25 school districts in New York City, reaching over 300 individuals with autism and with Individualized Education Plans over a five-year period.  Results have been consistently strong and positive.  An example of data collected from three 16-year-olds is indicative of the success of the program.  Target behaviors for the teens ranged from angry self-talk to self-injurious behavior.  As soon as the ISA Curriculum was introduced all three individuals showed dramatic de-escalation of the target behaviors, which generalized to a second setting within the school environment. 

There are important implications for the ISA Curriculum.  Training in and use of the ISA Curriculum empowers individuals to become more independent in advocating for their needs, wants, desires and dreams.  This can result in a dramatic improvement of effective and efficient communication leading to better quality of life.