Parents of children with a disability, particularly autism, have a daunting task when it comes time to send them off to college. Every student who goes to college has to navigate a major life transition, but this is even more true for a students with autism. Legally, a student becomes an adult at 18. However, many parents do not have to face the reality of all that entails until their child walks onto a college campus.
As a parent of a student with autism and a college lecturer, I am aware of the concerns and worries. They may include: “Will the environment be too stressful?” “Will she find friends?” “Will the professors be kind?” One of the key competencies that all students should have — and that students with autism must develop to succeed — is self-advocacy. In its simplest form, it sounds easy. A student has to be able to ask for help when and if he or she needs it. However, there is so much more to it.
As an autistic college student of 18 or older, your “child” is actually an adult. As such, he or she has a wealth of choices to make about the college experience, including whether or not to even admit having an autism diagnosis. The disability office at my institution calls that “self-identifying,” and college students with disabilities must self-identify to receive any accommodations.
Many students do not want to be labeled and resist contacting their disability office. My own daughter thought professors and college staff would think she was making excuses, so she was hesitant to claim her diagnosis. It’s important, though, to have a conversation with your student ahead of time, dispel any misunderstandings, and urge them to at least discuss his options with the disability office.
If a students wants to self-identify, then the student is responsible for managing all that goes with it. That means the school will expect the student to communicate his or her needs as they arise, including deciding which accommodations are necessary and determining if accommodations are adequate.
Parents have legal ways to stay involved, usually by signing a FERPA that allows the parent access to student information, but that can be a double-edged sword. I will cover more about that in a later post; I would never tell a parent not to get involved when necessary, but we also want to empower our students to learn to speak up for themselves.
So how do we teach self-advocacy? The first step is understanding it. The difficulty with self-advocacy is that it encompasses so many other skills. Some of those are:
- Self-awareness: Students have to know when they need help and what they need. This includes self-monitoring for comprehension.
- Flexibility/Problem-solving: Students need to develop multiple strategies to find information when necessary, such as asking a classmate, checking the class website, or asking the professor.
- Self-control: Students have to control anxiety enough to speak up, approaching the professor to discuss what is going on.
- Social judgment: Students have to judge what information must be divulged. They have to decide if and when to tell others about their disability so they can access the help they need.
- Knowledge of rights: Students must know their rights as a disabled adults.
- Decisiveness: Students must be able to decide a course of action and articulate it; they also must be able to follow through once guidance has been given
As a student cycles through using all of these various skills, they can be hampered by a lag or difficulty at any point. So what can a parent do to build up these skills?
One easy yet efficient way when a student is younger is to talk through your own decisions and thought processes. Provide a running commentary. For example, watching a cooking show, you could start to narrate your thoughts: “I am writing down the ingredients, but the hostess on this show is asking for a pinch of salt. I don’t understand exactly how much a pinch would be, so I am going to Google it. If I can’t find out there, I can call Grandma. Once I find out, we will make the cookies and find out if I did it correctly. If I didn’t we will find out what we did wrong. Maybe I will have to look it up in another cookbook.” The same narration of your thoughts would work in many settings, and sets up that confusion and self-monitoring is the norm.
As a child becomes an older teen (and less likely to listen to us drone on about our own thoughts), a better strategy would be to ask questions and let your student work through the process him/herself. You can guide them to self-advocacy by asking the following questions:
- Do you understand the information? If not, did you believe you understood it in class?
- Do you understand the instructions? Can you tell me what you’re supposed to do?
- What did the teacher say? What do you think she/he meant?
If your student is not sure or has questions, you can ask these follow-up questions:
- Who might it be appropriate to ask? Is this information a classmate could help with, or do you need to email your teacher?
- What exactly do you need to know? (Try to keep your student from simply saying “I don’t understand Chapter 9.” What ideas in Chapter 9 is he or she struggling with?)
- Will an email be able to solve the problem, or do you need to go in early and sit down with the teacher or a tutor?
Students have grown up being consumers of information, but we have to condition them to seek out the information they need. Understand that every student has to develop these skills, but it becomes even more imperative for those with disabilities. With a parent in the background as their advocate, talking them through the thought processes necessary, our students can become more independent and the successful adults they were meant to be.