April 20, 2012

ASD and Self-Advocacy

The following is written by Andrew Nelson, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. In this article Andrew discusses self-advocacy and provides resources and information that may support individuals in learning this important life skill. Please click on words or phrases in blue below to be linked to websites about that topic.

Self-advocacy is a natural part the human experience and people have and continue to speak up for their wants, needs, and dreams.  Communities come to know what a person values through their active self-advocacy and healthy change can occur through the interaction between self-advocates and the broader culture.  Historically, the voices of people with disabilities have been squelched by systems.  Through brave self-advocacy and partnerships with supportive allies people with disabilities have gained much ground when it comes to determining positive futures.

Sometimes individuals on the autism spectrum experience intense roadblocks to self-advocacy.  Communication, social, and sensory challenges can make speaking up for wants and needs extremely challenging.  However, this does not mean that people with autism do not have intricate desires for their lives.  One only has to watch the video “In My Languageto realize what dangerous assumptions can be made about a person with communication, social, or sensory differences.  Helping our friends with autism develop their own self-advocacy styles and skills will help them effectively direct their lives in spite of the biases or assumptions of others.

 Individuals with autism have been working cooperatively to help one another develop self-advocacy skills and partnerships.  Organizations like AUTREAT , AASCEND , the Autistic Self-AdvocacyNetwork and the newly-formed Autistic Global Initiative have made self-advocacy the central focus for individuals with autism and the “culture of self-advocacy” is finally beginning to permeate into the systems supporting people with autism.  Sometimes the phrase self-advocacy tends to conjure images of activists marching on governments or speaking in front of large committees to make or change laws.  This is only one of the many forms of self-advocacy.  In fact, a person telling someone what they would like for breakfast is also a form of self-advocacy!

Generally speaking, when attempting to assess a person’s self-advocacy skills we tend to look at 3 indicators: self-awareness, competence, and autonomy.  The following definitions were co-developed with Valerie Paradiz, Ph.D.  Self-awareness refers to an awareness of one’s sensory experience and needs, social tendencies, strengths, interests, and general way of being (also includes awareness of legal rights and entitlements).  Competence refers to evidence that an individual has tools and strategies to effectively navigate disclosure and advocate for accommodations, according to his/her preferences, interests or strengths.  Autonomy refers to the ability to advocate for accommodations in a variety of settings and situations, disclose to protect or foster oneself, use strengths and interests to integrate into cultures, and understand when to assert one’s rights. 

Each person on the autism spectrum will have different levels of self-awareness, competence, and autonomy.  These indicators provide critical information about what supports are needed to achieve greater success in self-advocacy.  For example, a person may not be aware of her senses as being separate inputs or as having a specific label.  She may lack strong sensory self-awareness.  Teaching lessons can be designed to give each of her senses a name or picture and connect real world smells, sights, sounds, textures, etc. to those sensory names or icons.  Once she understands that olfactory or smell experiences are connected to her “sense of smell” she can hopefully recognize and pinpoint those smells that are problematic.  Hopefully, she can then self-advocate more effectively by communicating “that smell is bothering me, can we make a change”, resulting in more competence and autonomy as well.             

 The importance of self-advocacy was recognized in the past, however there were limited resources to help teach self-advocacy skills and teach allies how to support self-advocates.  The Integrated Self-Advocacy Curriculum, by Valerie Paradiz, Ph.D., is a comprehensive curriculum that addresses both of those needs.  Eleven different units are presented which range from preparing to participate meaningfully in an IEP meeting to understanding the skills needed to manage disclosing one’s diagnosis to others.  The ISA Curriculum has both a Teacher and Student manual, making it extremely user-friendly.  One unit is dedicated to teaching individuals how to conduct an ISA Sensory Scan.  Individuals learn to scan the immediate environment to identify potential sensory challenges and then develop self-advocacy plans and scripts to address the issue.  It is incredible to see people discover they have a degree of control and say in environmental factors that had been difficult in the past. 

 The state of West Virginia has an active self-advocacy community.  Groups like People First of WV and The Arc of WV are helping to develop a strong network of self-advocates across our state, and individuals with autism are shaping that network.  Also, the WV Developmental Disability Council offers a class called Partners in Policy Making which helps adults with developmental disabilities and parents of young children with developmental disabilities become familiar with the policy making and legislative process at the local, state and federal levels.  On June 14th the WV DD Council is also sponsoring a WV Youth Self Advocacy Conference. Our state has a well-respected self-advocacy community, as was evident at the recent Allies in Self-Advocacy Summit in Baltimore, MD, and those of us in or supporting the autism community should network in earnest with other self-advocacy stakeholders in WV.     

Finally, the WV Autism Training Center offers a variety of services and the self-advocacy of people on the autism spectrum is central in our initiatives.  Individuals with autism are encouraged to share their dreams and goals during person-centered planning meetings, actively drive their college experiences, lead school meetings, direct their education at IEP meetings, co-train others in their communities, communicate their preferences, and express themselves as freely as possible.  We strive to creatively and compassionately support people on the spectrum as they pursue a life of quality.