Self-Advocacy

Transitions can be challenging for everyone because they represent a change from one activity, event, phase, or even different stages of the lifespan cycle. Most people have the benefit of being able to prepare for most changes by thinking them through or having access to resources enabling them to make these transitions. However, sensory distortions and other challenges often prevent persons on the spectrum from enjoying the same success in transitions as non-autistic persons. One goal for everyone supporting those with autism is to provide the necessary education and access to information, allowing an equal chance at success in navigating transitions in what is often a confusing world.

Transitions come in all sizes, shapes, and colors. For some people with autism, simply walking from one room to the other can be like walking off the face of the Earth — proper preparation must occur in order to successfully step across a threshold into the unknown. Others may be challenged when there is a change in the daily routine. In these situations, it is important to present the daily schedule in an understandable way while making it clear visually, aurally, tactilely or by other means that there is an upcoming modification. The balance of this article will focus on the education in self-advocacy aspect of transition to adulthood for people on the autism spectrum.

Rationale for Developing Skills in Self-Advocacy

The ability to self-advocate enables a person with autism to get her needs met while engendering better mutual understanding, trust, and productivity. It is imperative that the person with autism, or any other disability, know how to self-advocate because the responsibility to do so helps the individual tremendously after aging out of public school.

Self-advocacy involves making another person aware of one’s needs in a way they can understand and assist in your efforts for a modification in an environment. As a part of the self-advocacy effort, it is necessary to explain why the request was made to modify the environment. While most people seem to learn these skills through observation and practice, those on the autism spectrum often need direct instruction.

Teaching Skills in Self-Advocacy

One of the best ways to teach skills in this area is to use the Individualized Education Program (IEP). Usually, the IEP consists of a team of professionals, parents, and others familiar with the child on the autism spectrum. Even though the Individuals with Disabilities Education Act (IDEA) encourages child participation in the IEP at all ages, student involvement usually only occurs at the mandated age of 14, and even then it is still usually minimal.

By involving the child as a meaningful member of the IEP team to the best of their ability benefits both the other IEP members and the child. The IEP members, who may work with dozens of children, get a reminder of exactly whom they are helping. The student gets valuable lessons in advocating for themselves and working out a plan enabling greatest productivity.

It is often thought that self-advocacy is only for students at the higher end of the autism spectrum and that involving, for example, a 6 year-old nonverbal, hyperactive child in a 90-minute meeting is impossible. The truth is… it is impossible. However, having the child come to the meeting to interact with just a couple of the members for about a minute is very doable and engages the child with the educational process to the best of their ability. Another child may be able to communicate that he likes a certain class and finds another one difficult before leaving. Yet another child may be able to comment on certain sensory-based difficulties such as paying attention during a writing session because he is distracted by the noise of pencils scratching the paper as other students write. There are other students who have the wherewithal to research into, and lead significant portions of the IEP meeting. The more a child can learn to help themselves while in school the better off they will be in their self-advocacy and disclosure efforts after graduation.

Efforts in self-advocacy education are important for when the child leaves the mandated protection and provisions of advocacy from IDEA transitions to the much lesser protection of the Americans with Disabilities Act (ADA). One of the major differences between the two disability laws is that ADA requires a person with a disability to advocate for themselves for often much fewer protections and benefits afforded under IDEA.

Given that the public schools are charged with preparing the nation’s youth to lead fulfilling and productive lives, it only makes sense that self-advocacy instruction for those in need should be part of this education.

Stages of Self-Advocacy

Consider the following scenario: A 13-year old student in an inclusive classroom, Sam has been coming home crying for the past week. Through discussion with Sam and classroom observation you see that some of students take great fun in watching Sam squirm as they lightly touch him in apparent hope that Sam will eventually strike out… and get blamed for starting a fight. Previously, you would have intervened by talking with Sam’s homeroom teacher about how others are taking advantage of Sam’s tactile hypersensitivity.

But as part of Sam’s team you realize that it is time for him to work on self-advocacy. Kassiane Sibley’s chapter “Help me help myself” describes six stages of development in self-advocacy skills. These skills range from planning the advocacy effort with the student and having him observe the facilitator model the process to where the facilitator merely serves as backup support by telephone if needed (2004, in Shore, 2004). Since this is Sam’s first foray into self-advocacy you, the facilitation team, would work out with Sam some appropriate actions to take in his efforts. For example, while Sam might like to punch his bullies in the nose, you will help him reach the conclusion that talking to the teacher about his problem may be a better course of action for resolving his problem. Further advocacy work with Sam will include a fading away of direct support as he learns to speak up for himself.

References

Sibley, K. (2004). “Help me help myself”. In Stephen Shore (2004). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. 

As a child Stephen Shore was diagnosed with “Atypical Development with strong autistic tendencies,” viewed as “too sick” to be treated on an outpatient basis and recommended for institutionalization. With much help from his parents, teachers, and others, Mr. Shore is now completing his doctoral degree in special education at Boston University with a focus on helping people on the autism spectrum develop their capacities to the fullest extent possible. In addition to working with children and talking about life on the autism spectrum, Mr. Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and the soon to be released Understanding Autism for Dummies. Mr. Shore is also a board member of the Autism Society of America and president emeritus of the Asperger’s Association of New England. He serves for the Board of Directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP, and the College Internship Program.