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 experience difficulties in meeting course requirements. Additionally, the student may be at a loss regarding how to obtain needed assistance.
It is important to remember that after high school, the person with the disability is responsible for obtaining needed accommodations. 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 (IEP) in Self-Advocacy and Disclosure
The Individualized Education Plan 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
It is best to start teaching the concepts of self-advocacy and disclosure when the individual first learns about their disability and begins to need special education services. The key is to establish an early 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 this sense of self-determination is by helping the child recognize their likes and dislikes; then examining their preferences alongside their 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. Narrating or talking through activities that the child likes (or even ones they don’t) can help demonstrate that they do have preferences.
- “you are really good at building houses with those blocks!”
- “I know that waiting is very hard for you, but it is something we have to do.”
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
The Individuals with Disabilities Education Act encourages student involvement in the initiation of special education services as part of the transition out of public schools. This involvement is required when the student is fourteen or older. However, in reality, student involvement is downplayed in the early years. In my opinion, it is always appropriate to involve students in designing their educational plans to the extent their disability allows. The challenge is to find ways to include 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 a spectrum of ways to involve children in their IEPs.
Some students may eventually be able to spearhead the entire IEP process; from discussions with teachers about learning styles and accommodation, to “leading” the IEP meeting under supervision. Other students may only be able to attend their IEP meeting, interact with a few of the team members, and then leave.
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.
Either way, the IEP meeting allows the student to see the group of people who will listen and create their customized education plan. This meeting also gives the individuals IEP team members the opportunity to familiarize themselves with the student and their needs.
Other types communication may also be used for children who are unable to attend their IEP meeting. These methods include:
- Submitting a tape recording
- Submitting a letter
- Talking on speaker-phone
- Talking with the aid of a computerized system (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).
One thing is sure; students who learn skills in the areas of self-advocacy and disclosure will have much greater success later in life. 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