By Stephen M. Shore*
To understand the quandary that people on the autism spectrum often find themselves in, consider the following scenarios:
- You have just been shown your new office, which consists of a cubicle lit with fluorescent lights. As a person on the autism spectrum, exposure to this type of lighting is like being in a room with a strobe light –fun on Halloween perhaps, but what about all day, during work?
- You’re in high school. It’s time for a math test where each page has ten questions. The scratching sound made by the other students’ writing implements drives you, quite literally, to distraction. Not only that, but all those math questions on the test seem to jumble together.
- You have recently met a special person with whom you think you’d like to have a long-term relationship., Until now, you have put on a good act at “pretending to be normal” (Willey, 1999), and she hasn’t noticed a thing – yet – or has she?
These three cases bear directly on the subject of self-advocacy and disclosure, since each scenario is characterized by a need to modify the situation and provide an explanation of your reason for doing so to one or more people. Let’s take a look at what self-advocacy and disclosure is, and what it entails.
Two Sides of the Same Coin
It is important to recognize that self-advocacy and disclosure are interrelated. Self-advocacy involves knowing when and how to approach others in order to negotiate desired accommodations, so as to achieve mutual understanding, fulfillment, and productivity. In the process, some degree of disclosure about oneself is usually necessary, particularly if the accommodation(s) requested requires further explanation. In other words, being a successful self-advocate requires one to be not only literate about one’s needs, but also knowledgeable about how to get them met in an appropriate manner. In the first scenario noted above, the person who understands how successful self-advocacy and disclosure work, will know to make a mental note to talk to her supervisor about modifying the lighting as soon s possible. She will also know that an explanation for her request for different lighting will likely be needed. An important part of this process involves understanding how much disclosure is necessary and/or appropriate. In this particular case, the woman will most likely limit disclosure to merely stating that she has sensitive eyes, as no further explanation is needed.
When requesting accommodations it is important to be reasonable. For example, if while watching an action movie in a public theater, a person with aural sensitivities feels pain due to the volume level, is it fair for him to ask the theater manager to lower the volume at the expense of the other patrons? Might there be another way to accommodate his needs? Examples for accommodating oneself include wearing earplugs – or for those who experience tactile defensiveness – a set of headphones.
Most people in the neurotypical world learn how to advocate for, and what to disclose about themselves through a combination of observation, practice, and self-reflection. They quickly learn not only what is appropriate to ask for, but also what to tell others about their personal lives. However, because of their difficulties reading nonverbal cues and comprehending other pragmatic aspects of the “hidden curriculum,” (Myles, Trautman, & Schelvan, 2004), most people on the autism spectrum need direct instruction in order to learn the important skills of self-advocacy and disclosure. Sibley (2004) gives excellent examples of how to mentor self-advocacy and disclosure skills in graduated steps. In the early stages, the advocacy partner works with the advocate-in-training and models good advocacy skills by taking advantage of numerous real life situations to familiarize the chills with good self-advocacy practice. By the end of the process, the advocacy partner merely services as a resource to be tapped if and when needed.
Applying Self-Advocacy and Disclosure Skills in Higher Education
Imagine the following: In considering different colleges, a student with Asperger syndrome does research into their disability offices. By perusing college websites, making phone calls, and interviewing appropriate personnel, she learns about the type and level of assistance available, as well as the documentation required to access accommodations and services. Upon acceptance to the college of her choice, she immediately makes an appointment with the college disability counselor to disclose her condition, and to discuss how Asperger syndrome is likely to affect her schoolwork. She then supplies the required documentation, such as a copy of her neuropsychological examination. Additionally, she mentions the academic accommodations that were helpful to her in high school, and inquires if the same or similar assistance may be offered at the college. The student who can lay this groundwork is well on her way towards receiving needed accommodations.
Now let’s consider how the high school student in the math example cited earlier might successfully advocate for himself when he enters college. If he has learned that certain accommodations are required for achieving success in math, he is likely to be able to request the same types of accommodations that have worked in the past. For example, perhaps he can discuss the disabilities counselor the success he experienced when one of his public school teachers reformatted the test so that there was only one question per page. The disabilities counselor may also be able to provide information on the availability of alternate testing sites at the college for students who are easily distracted. As this example demonstrates, there are important benefits that come with learning about one’s strengths and challenges in order to successfully adjust the environment to accommodate one’s needs.
The Downside Risks of Not Learning Self-Advocacy and Disclosure Skills
The public schools are charged with preparing the nation’s youth to lead fulfilling and productive lives according to the customs of a child’s society. While this involves the mastery of reading, writing, arithmetic, civic awareness and other academic area, it also includes instilling a sense of responsibility and addressing moral development. Teaching self-advocacy and disclosure skills to individuals on the spectrum should be undertaken by the schools, as it is a necessary part of their education if they are to become more effective citizens. Here in the United States, the Individuals with Disabilities Education Act (IDEA) provides support for this, since it requires that the public school identify, assess, and provide needed services for students with disabilities. Unfortunately, upon graduation, obtaining needed accommodations becomes a self-initiated process under the Americans with Disabilities Act (ADA). Sadly, A large majority of students with autism and other disabilities graduate from public schools lacking education in self-advocacy, rendering them unable to successfully advocate for themselves. Likewise, they often lack an understanding of how to handle disclosure. This lack of knowledge can cause people on the spectrum to have significant difficulty in the adult domains of higher education, employment, relationships, and other areas of life.
In a college situation, variances in learning style, combined with the pace of the curriculum, may cause the person with ASD to experience difficulties in meeting course requirements. To make matters worse, the student may be at a loss regarding how to obtain needed assistance. It is important to remember that after high school, the onus of obtaining needed accommodations is on the person with the disability. For example, in higher education the student must initiate the process of acquiring accommodations by contacting the appropriate office, making the appropriate disclosure, preparing the documentation required, working with instructors, etc. Likewise, in the workforce it is incumbent upon the person with the disability to seek out the individual(s) responsible for handling affairs related to the ADA.
The Role of the Individualized Education Plan in Self-Advocacy and Disclosure
The Individualized Education Plan (IEP) is an excellent way to fill the current education gap in the development of self-advocacy and disclosure skills. Just as the IEP is used to level the academic playing field by allowing those with disabilities to have the same chances as everyone else for success in school, so too must the same be done for teaching self-advocacy. The beauty of using the Individualized Education Plan for teaching school-aged children these skills is that it already exists, and it is an excellent vehicle for this purpose.
Set the Stage by Starting Early
Generally, the best time to start teaching the concepts of self-advocacy and disclosure is when it is first learned that the child has a disability and is deemed in need of special education services. One of the prerequisites for success in this critical subject area is to establish a sense of self-determination within the child; that is, an understanding of one’s preferences in the context of one’s strengths and challenges. One way to instill a sense of self-determination is to help the child make a list of her likes and dislikes, while at the same time encouraging her to examine how closely her preferences line up with her strong points. With the nonverbal child it’s important to recognize that receptive language may be better than expressive, leading the child to understand more than he can tell you. Therefore, narrating or talking through activities that the child likes (e.g., “Boy, you are really good at building houses with those blocks!”), or even ones that he doesn’t like (e.g., “I know that waiting is very hard for you, but it is something we have to do.”) can help demonstrate to the child that he can and does have preferences, as well as varying abilities depending upon the particular activity. Indeed, helping children to develop a sense of self-determination sets the stage for involving them in the development of their own IEPs.
Reframing the Student’s Role in the IEP
Even though IDEA encourages student involvement in the initiation of special education services, and specifically mandates student involvement at age fourteen, as part of the transition out of public school, the reality is that student involvement is downplayed in the early years, as noted in the designation of as appropriate, seen in figure One. In my opinion, it is always appropriate to involve students in designing their educational plans to the extent their disability allows as seen in Figures two.
The challenge is to find ways to involve children of all abilities in their own individualized education plans.
Techniques for Involving Children at all Levels in Designing Their Own IEPs
Just as autism exists on a spectrum with great diversity, there is also a spectrum of ways to involve children in their own IEPs. Some very competent students may eventually be able to spearhead the entire IEP process from discussions with teachers about learning styles and determining appropriate accommodation, to “leading” the IEP meeting under the watchful eyes of the IEP team leader. Other students – for example, a four-year-old hyperactive, nonverbal child – may be able to do little more than attend an IEP meeting, interact with a few of the team members, and then leave. The benefit here is that you are demonstrating to the child that there is a group of people who are assembled to ereate a customized education for her benefit. An added plus is that you have reminded some of the IEP team members who may have little contact with the child, exactly who that child is, and what some of her needs are.
Most children will fit somewhere between these two extremes. Some children may only be able to read a prepared two- or three-sentence statement to the IEP team.
Other modalities of communication may also be used, especially for children who are unable to be physically present during the IEP meeting. One possibility is to have a student submit his input in writing as in Figure Three. Other methods of participating in an IEP meeting include submitting a tape recording, talking on speaker-phone, or using a computerized system to select graphics in order to communicate via synthesized voice. These are excellent ways to fulfill the requirement under IDEA to “take other steps to ensure that student’s preferences and interests are considered” (34 C.F.R.§300.344(b)(2).
Benefits of Learning Self-Advocacy and Disclosure Skills
A major challenge faced by the autism community today, and one that has received little attention over the years, is how to teach those with autism to successfully self-advocate, and how to address the question of how much information to disclose. Clearly, the student who has learned appropriate skills in the areas of self-advocacy and disclosure will have much greater success in life after graduation. On a final note, the time to begin the learning process is now.
A guide to the individual education plan program. Office of Special Education Programs. Retrieved March 20, 2003, from http://www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide/.
Myles, Bl, Trautman, M, & Schelvan, R (2004). The hidden curriculum: Practical solutions for understanding unstated rules in social situations. Shawnee Mission, KS: Autism Asperger Publishing.
Shore, S (*2004). Using the IEP to build skills in self-advocacy and disclosure. In S.M. Shore (Ed.), Ask and tell: Self-advocacy and disclosure for people on the autism spectrum (pp 65-105). Shawnee Mission, KS: Autism Asperger Publishing.
Sibley, K. (2004). Help me help myself: Teaching and learning self-advocacy. In S.M. Shore (Ed.), Ask and tell Self-advocacy and disclosure for people on the autism spectrum (pp. 33-63). Shawnee Mission, KS: Autism Asperger Publishing.
Willey, L.H., (1999). Pretending to be normal: Living with Asperger’s syndrome. London: Jessica Kingsley Publishers.
*Excerpt from Autism Spectrum Quarterly Fall 2004