To understand the dilemma 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. To a person with autism, this may feel like working under a strobe light.
- 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. In each scenario, the situation needs to be modified, which may require an explanation for one or more people. Let’s take a look at what self-advocacy and disclosure are, and what it entails.
Defining Self-Advocacy and Disclosure
It is essential to recognize that self-advocacy and disclosure are interrelated. Self-advocacy involves knowing when and how to approach others to negotiate desired accommodations 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 verbalize one’s needs and to understand what action steps are necessary to meet those needs. Let’s go back to the first scenario of the lighting at work. Ideally, 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 as possible. They will also know that an explanation for their request for different light will likely be needed. An important part of this process involves understanding how much disclosure is necessary and appropriate. In this particular case, the woman will most likely limit the disclosure to merely stating that she has sensitive eyes, as no further explanation is needed.
Asking for Reasonable Accommodations
When requesting accommodations, it is essential to be reasonable. For example, it may not be feasible for a person with aural sensitivities to ask for a manager to lower the volume at a movie theater with other patrons. However, there may be different ways to accommodate that person, such as earplugs or headphones.
Learning to Self-Advocate
Most neurotypical people learn how to advocate for themselves and what to disclose, through a combination of observation, practice, and self-reflection. However, most people on the autism spectrum need direct instruction on self-advocacy and disclosure because of their difficulties reading nonverbal cues. Sibley (2004) gives excellent examples of how to mentor self-advocacy and disclosure skills in graduated steps. For example: in the early stages, the advocacy partner works with the advocate-in-training and models good advocacy skills. Real-life situations can be used to familiarize the trainee with good self-advocacy practice. By the end of the process, the advocacy partner merely serves 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 on the autism spectrum does research into their disability offices. Through online research, the student learns about the type and level of assistance available at different schools, as well as the documentation required to access accommodations and services. Upon acceptance to college, she immediately makes an appointment with the college disability counselor to disclose her condition and make arrangments. 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 college offers similar assistance is offered at the college. The student who can lay this groundwork is well on her way towards receiving needed accommodations.
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 been successful in other classes with specific accommodations, he can advocate for himself to have similar accommodations in place in this scenario. For example, perhaps he can discuss the disabilities counselor the success he experienced when another teacher reformatted his test with only one question per page. The disabilities counselor may also be able to provide information on alternate testing sites for students who are easily distracted.
Both of these examples show the importance of learning about one’s strengths and challenges and successfully adjusting the environment to accommodate one’s needs.
The Role of Schools in Teaching Self-Advocacy
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. Beyond teaching the mastery of academic and civic awareness, they are also responsible for addressing moral development.
Teaching self-advocacy and disclosure skills to individuals on the spectrum should be undertaken by the schools. It is a necessary part of their education if they are to become more effective citizens.
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).
The Risks of Not Learning Self-Advocacy and Disclosure Skills
Sadly, the majority of students with autism and other disabilities, who graduate from public schools, lack education in self-advocacy, rendering them unable to 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 autism to experienc