Self-Advocacy - When, How, Why, to Whom?

A 13-year old student in an inclusive classroom, Sam has been coming home crying for the past week. Through discussion with Same and classroom observation you see that some of the 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. You have good ongoing relationship with Sam's educational team and feel grateful that they truly have Sam's interests in heart. They respect you as an advocate for Sam's educational plan as an equal. As you pick up the phone to talk with his teacher -- of course she'll agree to relocate Sam's desk away from the bullies -- you are suddenly struck with an idea. It's time to involve Sam in his own self-advocacy and the disclosure that goes along with the process. How will you do it?

This article will examine some necessary preconditions for developing skills in self-advocacy and disclosure for people on the autism spectrum, teaching skills in self-advocacy using a developmental stage level approach, and finally, preparing children with autism to appropriately advocate and disclose for themselves in a way they others can understand and assist when the request is made. In short, we will look at how to empower Sam to make his own decisions of self-advocacy and disclosure as he prepares for transition towards adulthood.

Self-Advocay Defined

Self-advocacy involves knowing when and how to approach others in order to negotiate desired goals, and in order to build better mutual understanding and trust, fulfillment and productivity (Shore, 2004). In a practical sense, suppose Dot, a sixteen year-old young lady with Asperger Syndrome is shown her new office lit with fluorescent lights and she happens to be sensitive to this type of illumination. In fact, like many people on the autism spectrum, Dot perceives fluorescent lights like most people see a strobe light -- fun on Halloween, but hardly conducive for workplace productivity.

In order to advocate for herself, Dot will need to request to the supervisor if a change of lighting, perhaps to incandescent lamps could be made. In fact, Dot could even offer to bring in her own lighting to make the supervisor's job in fulfilling the request easier. Another suggestion could be to move Dot's workplace to a window for more natural lighting. Possibly even disconnecting the fluorescent light above her desk will be enough. However, with her self-advocacy effort, Dot is also going to have to make a disclosure.

Successful self-advocacy often involves and amount of disclosure about oneself that carries some degree of risk, in order to reach that subsequent goal of better mutual understanding (Shore, 2004). In other words, Dot is going to have to state why she needs this accommodation. In some situations it may be appropriate to make a "hard" disclosure that she has Asperger Syndrome. However for this case, especially since the supervisor does not know about Dot's placement on the autism spectrum, a "soft" of partial disclosure is much more appropriate. Perhaps Dot will merely mention that the fluorescent lights hurt her sensitive eyes.

The question remains, how are we going to educate Sam, Dot, and others on the autism spectrum the necessary skills for self-advocacy and disclosure? Ideally, it starts by setting the preconditions when the child is young.

Setting the Preconditions for Success

An important precondition for successful self-advocacy and disclosure is awareness of self. Both Sam and Dot need to understand how autism affects their interactions with others and the environment. They need to have a familiarity with their characteristics -- their strengths and challenges. A parent or caretaker can do this with a child from a very early age. In fact, the earlier a child has an explanation about their differences the better off they will be.

Catch the Child Doing Something Well

Starting at age 4 I would take apart watches using a sharp steak knife. Out would come the motor, the hands, faceplate, etc. I had great fun! Eventually, the timepiece would be reassembled; still working and with no pieces left over. My parents noticing this made sure to let me know that I had a useful, unusual skill. Additionally, soon there were other objects to take disassemble such as clock radios and other devices. Later on, I transferred this mechanical ability to teaching myself bicycle assembly and repair. I was successful in paying for part of my undergraduate tuition by running a bicycle shop.

Fortunately, my verbal ability was good enough for me to understand my parent's praise of this talent. For children more challenged in verbal communication, one should strive to let the child know of their strengths in any way they can such as with graphics or sign language. In short, let the child know of their strengths in any way possible. In addition to developing greater self-understanding, these talents can be developed for eventual courses of study and successful employment (Grandin & Duffy, 2004).

Four Steps to Disclosure

I was lucky with disclosure. My parents used the word "autism" around the house for as long as I can remember. While we did not know much about what it was, it did explain a lot of differences. For example, I had a reason why I had difficulty making friends in school, learning school subject, along with interests in science and mechanical skills. However, either through shame of the diagnosis or being misdiagnosed or not even diagnosed, many people don't find out about their being on the autism spectrum until later in life. As a result, they often go through difficult times as they attempt to reconcile challenges in their lives without knowing the cause.

I have developed a four-step process for telling people they are on the autism spectrum that works pretty well for me (Shore & Rastelli, 2006). The process can take as short as 10 minutes and as long as several months depending on the person and how much denial may have built up over time. I shall describe below how this worked for a child with Asperger Syndrome I had been teaching music lessons to for the past 8 years.

Strengths and Challenges

A child I have been teaching music to since age five has Asperger Syndrome. His parents refused to use the word "autism" around the house, hoping that with enough intensive activity, we could early "interventionize" the Asperger Syndrome right out of him. By age 13, well… he still had Asperger Syndrome. Depending on the person these steps can take as short as 10 minutes or as long as several months. The four steps are as follows.

Identify Characteristics. Discuss with the person his or her strengths and challenges. I prefer to use the word "challenge" rather than "weakness" because the latter is a rather static word whereas the former has the sense that something can be done to work with, around, or through. We began the lesson with a discussion of this child's strengths and music, graphic design, and mathematics. We then moved over to where his challenges lie in making friends at school, penmanship, and physical education.
"Rack up" the Characteristics. Work with the person to start delineating the strengths and challenges. Ideally, you will help them realize that his strengths can be used to help accommodate for where he has difficulties. After sorting out these characteristics we talked about how he can use his strength in computers to help overcome the frustrations he experiences from the physical act of writing papers and other assignments by hand. He can type them much faster and more neatly then by writing them.
Nonjudgemental Comparison. This step involves comparing a person's characteristics with others with the goal of demonstrating that different people have different strengths and challenges. Examining a potential successful role model such as those persons discussed in Asperger Syndrome and Self-Esteem (Ledgin, 2004) with similar set of characteristics can be helpful. We examined his sister's set of characteristics and found that she had some overlapping and different characteristics. She has great penmanship and makes friends easily. However, they both share an affinity and talent for music. In fact, this person is now teaching his little sister how to play the piano with much success.
Presenting the Label. I usually preface the discussion of the label with the fact that there are scientists, teachers, doctors, and others who study the wide diversity of characteristics found in people. "It just so happens that your characteristics line up with…" After the preface I told him that his characteristics line up with what is known as Asperger Syndrome, followed with my telling him that I also had Asperger Syndrome, and perhaps that was why we have gotten along so well over the past 7-8 years. His next statement was "Can we get to the lesson"? He had had enough.

Aftermath and Benefits to the Disclosure

All told, this took about 15 minutes. In fact, I told him nothing he didn't know before, save for the label. People with autism, even young children, know they have a difference. For example, my student knew he had the strengths and challenges we discussed, as well as realizing that there were accommodations being made as needed. Revealing to him the label allowed him to make a cohesive whole out of a sea of characteristics and accommodations. He also now knows that his differences are not because he is stupid or somehow lacking, but rather from a neurological difference that he has. He has a different; not disordered way of being (Shore, 2004).

Three weeks later I met his father at work and asked him how his son took the disclosure. Dad beamed stating "My son loves having Asperger Syndrome. He's on the computer learning that he is not alone, how to accommodate for his challenges, and to celebrate his strengths."

Armed with sufficient self-understanding, my student is now ready to advocate for his needs in a way that others can understand and assists with his requests.

Teaching Skills in Self-Advocacy

My experience with others on the autism spectrum suggests a decided lack of ability to successfully engage in self-advocacy and disclosure the reason why in a way others can assist in a meaningful way. Just as is often needed for the teaching of social skills and the reading of nonverbal communication, what is required is direct instruction for the development of skills in self-advocacy and disclosure. The good news is that those of us on the autism spectrum can learn the techniques for learning self-advocacy and disclosure and the tools and materials for teaching these vital skills already exist. Ask and tell: Self-advocacy and disclosure for people on the autism spectrum (Shore, 2004) consists of six chapters - all written by people on the autism spectrum - focuses on teaching these vital skills. My contribution to the book involves using the Individual Education Program (IEP) that every child in the United States receiving special education services has.

Using the Individual Education Plan for Teaching Self-Advocacy and Disclosure

The Individuals with Disabilities Education Act (IDEA) mandates that the public schools find all children with disabilities (Child Find), assess, and provide them with special education and services needed to give the child an equal chance for success in education as their peers in the Least Restrictive Environment (LRE). In some cases, of course, the process works better in some situations than others, but that is the ideal. IDEA actually encourages children of all ages to be involved in the development of their educational plan and mandates this involvement by age 16 for the period known as "transition." Some states mandate this involvement by age 14.

Currently, educational advocacy typically takes place through the IEP team consisting of special and regular education teachers, aides, professionals who work with the child, a school representative, and the parents or guardian. Unfortunately, at least until transition, the child is only included as an afterthought. However, there are ways to engage the child as a team player for the IEP process no matter where he or she is on the autism spectrum.

Below is how the student's IEP could be implemented conceived in order to maximize a child's involvement and learning of self-advocacy and disclosure skills.

Adapted from "A Guide to the Individualized Education Program". Office of Special Education Programs. 16 June 2002. <http://www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide/>

Involvement in the IEP for Children Throughout the Autism Spectrum

Commonly, people say "Involvement in the IEP and teaching Self-Advocacy is great for verbal children who are self-aware. What about my five year-old nonverbal, hyperactive, child who cannot sit still for more then two minutes?" Fortunately, there are ways to involve children in their education no matter where they are on the autism spectrum. The key is involving the child to the extent of their ability.

Below are some ideas for involving children who may be more severely affected with autism.

Young nonverbal and hyperactive. Child is escorted in to the beginning of the meeting, interacts with a couple of the members that she already know, and then leaves. Total time in the meeting: About one minute. There are two benefits to this. One, the IEP members, who may work with dozens of children are given a chance to connect the IEP to the face of the child. Two, the child gets the idea that there is a team of people gathered to help develop her educational plan.
Some communication ability. Using Picture Exchange System, Sign Language, Verbal, or other form of communication, the child indicate which class or school activity they like and one they don't like. If possible, have them state what about these classes or activities they prefer and otherwise.
Write a letter. Another child could, for example write the following:
To my IEP Team,
I like the way Mr. Dowd teaches math. He makes it fun and easy for me. Mrs. Sugarmans' English class is very difficult. I don't understand when she diagrams sentences on the board and the scratching of the student pencils during writing time makes it very hard for me to concentrate.
Truly yours,
Joey

From Shore, S. (2004) "Using the IEP to build Skills in Self-Advocacy and Disclosure" in Stephen Shore. Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 80.

This letter gives a whole boatload of sensory and other information to the IEP team to work with!
Lead parts of the IEP meeting. Some children have the ability to determine which accommodations are effective and be able to discuss possible appropriate services - under the watchful eye of the IEP team leader. Although not all children will reach this level during their grade school career every step made towards successful self-advocacy and disclosure empowers them to do so at home, work, continuing education, and in the community.

Wouldn't it be great if a child graduating from public school could make their way to the student disabilities office and state, for example "I have Asperger Syndrome and it affects my ability to learn in school in the following ways… These accommodations were helpful… I wonder if we might be able to duplicate those accommodations in high school here at the college?"

Building Familiarity with the IEP

Using the IEP requires familiarity with the document. Unlike college students, parents, and educators, children with autism and other special needs will not sit for long explanations of the inner workings and parts of the IEP. However, they can be introduced to the document with the questions such as:

My Individualized Education Plan
Name: _______________________ Date: __________________________

Question	Answer
Where is my name located?
What are my measurable annual goals?
When is the date of my next review?
What does the "present level of educational performance" tell me?
What steps am I taking to prepare for life after graduation?
What right(s) will be transferred to me upon reaching the age of majority?

Adapted from Shore, S. (2004) "Using the IEP to build Skills in Self-Advocacy and Disclosure" in Stephen Shore. Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 88.

Getting back to Sam

The best way to begin the process of teaching Sam skills in self-advocacy and disclosure is to involve him in the process. As mentioned above, your previous advocacy for Sam would have been to tell his classroom teacher directly about the problem and quickly resolve it. Now, we need to bring Sam into the decision-making process.

Initially, it is important to validate Sam's experience as one that is real and important to him. Additionally, Sam needs to know that through collaboration, something can be done about the situation. By teaching Sam according to his skill level in self-advocacy he can begin to learn how to ask for changes in the environment or assistance on his own and to combine the appropriate self-disclosure.

Six Developmental Stages of Self-Advocacy

Just as other subjects must be taught at the appropriate skill level, the same holds true for teaching self-advocacy. The person with little to no experience in this area will need more support than one who has been advocating for themselves for a long time. The six stages of self-advocacy as developed by Kassiane Sibley (2004) are as follows:

Planning and Modeling: After planning for their own self-advocacy with the facilitator the person then observes the facilitator engage in the act of advocating on their behalf. Sam and the facilitator plan what the facilitator will say to the teacher as Sam observes and learns.
Facilitation and Confidence Building: Facilitator serves as a guide for the self-advocacy process and remains ready to step in as needed. In addition to collaborative planning, Sam conducts part of the advocacy conversation with the teacher, possibly with the help of the facilitator to introduce the subject of the conversation and stepping in as needed.
Partnering and Letter Writing: Equal sharing of advocacy responsibilities. Advocate takes the lead as facilitator offers strong guidance, moral support while the person does most of the advocating. Letter writing. Sharing the load 50-50, Sam will do about half the talking or interacting with the teacher with the facilitator acting more as a guide.
Moral Support: Partner continues to assist with the preparation. The advocate does most of the talking with the partner nearby to assist if needed. , Sam will do most of the talking or interacting with the teacher with the facilitator acting even more as a guide.
Taking the Lead: The advocate leads the entire process with assistance from the facilitator but only under the self-advocate's direction. Sam does all of the planning and advocating on his own behalf with the facilitator assisting only upon Sam's request.
Independent Self-Advocacy: The advocate undertakes all the preparation, presentation, and evaluation in a completely independent manner. Sam does it all and the facilitator remains available, for example, by cell phone.

Matching the Developmental Stage to Sam

Given that Sam has not advocated for himself, he would be placed at stage one. After validating Sam's difficult experience the advocacy facilitator can help brainstorm possible solutions and determine their suitability for taking action. Perhaps the idea of punching the offending students in the nose would be discussed. However, the likelihood of getting suspended for violent behavior would make this a poor choice. Eventually, the talk could be steered towards talking with the teacher of this class and asking to be seated away from the bullies. Since this is stage one, after they both agree on what to tell the teacher, the facilitator models the advocacy effort for Sam as he watches him discuss the problem with the teacher and advocate on Sam's behalf. Depending on Sam' ability, he may be given a chance to take part in, or even lead the discussion with the teacher.

Conclusion and Summary

Self-Advocacy and Disclosure is a vital skill for leading a fulfilling and productive life. Disclosing to people with autism that they have this condition as early as possible will make it easier for them to reconcile their difference with others as characteristics rather than as deficits. Using the IEP as a tool for familiarizing students with the development of their own educational plan will empower them to become conversant in the appropriate ways to talk about their own needs and suggest accommodations for doing so.

Bibliography

"A Guide to the Individualized Education Program". Office of Special Education Programs. 16 June 2002. <http://www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide/>

Shore, S. (2004) "Using the IEP to build Skills in Self-Advocacy and Disclosure" in Stephen Shore. Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company.

Sibley, K. (2004) "Help Me Help Myself: Teaching and Learning" in Stephen Shore. Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company.

Shore, S. & Rastelli, L. (2006). Understanding autism for dummies. New York: Wiley and Sons.

Grandin, T. & Duffy, K. (2004). Developing talents: Career for individuals with Asperger Syndrome and high-functioning autism. Shawnee Mission, KS: Autism Asperger Publishing Company. Ledgin, N. (2002). Asperger Syndrome and self-esteem: Insight and hope through famous role models. Arlington, TX: Future Horizons.