Don’t Forget to Invite the Student! Including Students with Asperger Profiles in Meetings

According to the National Dissemination Center for Children with Disabilities, “to write an effective IEP for a child with a disability, parents, teachers, other school staff—and often the child— must come together at a meeting to look closely at the child’s unique needs.” As noted in Bonnie Glickman’s article, students are legally entitled to attend their own meetings beginning at age 14. Too often, however, when school personnel and families think of an IEP team, they may think of parents, classroom teachers, special education classroom teachers, the principal, the special education directors, the school psychologist, counselors, and perhaps the Behavior Analyst or other consultant—but not invite the student with Asperger Syndrome (AS)—the very person whose life will be most affected by the team’s decisions, and for whose sake the team is being convened in the first place.

There may be reasons why parents or educators hesitate to invite students with AS to team meetings, including the risk of the student misinterpreting what the adults say at the meeting, or the adults misinterpreting what the student says. However, with careful preparation, and a skillful team leader, there are important advantages to having a student attend at least part of a meeting, or at least some meetings.

1. First of all, other team members benefit from seeing who the student really is and how the student really functions. Hearing directly from the student can carry far more conviction than hearing about something from a third party.It is especially helpful for the student to be able to state what s/he finds helpful or unhelpful at school—which may dovetail with parents’ concerns, but be most credible coming from the student.
2. It is also very helpful for the student to be able to articulate his or her vision of what s/he wants for his or her own future. The student’s own vision statement will be the basis of the delivery of transition services during the high school years, but elements of it could be brought into focus even before age 14 as a team gets to know not only a student’s needs and challenges, but also his or her interests, talents, and achievements.
3. The student gains an opportunity to learn about the people working on his or her behalf, and what each person’s role is. Team members could become go-to people when the student needs assistance at school.
4. The student can also benefit from an opportunity to practice self-advocacy, and be empowered by the experience of speaking up and being given a respectful hearing.
5. Especially as students move into adolescence, their buy-in to their educational program becomes critical. Everything is being done for the sake of the student’s future, but everyone’s efforts will be more effective to the extent that the student understands why accommodations or interventions are being offered, and takes active ownership of his or her own goals and educational program. Like most humans, students are far more likely to cooperate and participate when people seeks their opinion and are responsive.
   The IEP process seeks to answer many questions: What do we hope to accomplish? What are the students’ strengths? In what areas does the student need the greatest support? It seems we know many of the questions to ask, but can often overlook the person who we should be asking; the person who matters most. Once we become aware of this oversight and make efforts to include students in the IEP process, then perhaps they will no longer be the forgotten member of the team!

IDEA federal special education law (at §300.321) describes the IEP team as including the following members:

• The parents of the child;
• Not less than one regular education teacher of the child (if the child is, or may be, participating in the regular education environment);
• Not less than one special education teacher of the child, or where appropriate, not less than one special education provider of the child;
• A representative of the public agency who is qualified to provide, or supervise the provision of, specially designed instruction to meet the unique needs of children with disabilities; is knowledgeable about the general education curriculum; and is knowledgeable about the availability of resources of the public agency;
• An individual who can interpret the instructional implications of evaluation results;
• Other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate (invited at the discretion of the parent or the agency); and
• The child with a disability (when appropriate).

How Students Can Participate

Students can learn to draft their own objectives, although the way and degree to which a student participates will depend on the age and ability of the student. For some students, graphic organizers will provide sufficient support for organizing thoughts and ideas. Other students may benefit from preparing a list of statements or questions. When preparing for participation in the IEP process, students should be encouraged to comment on at least three sections:

1. Vision Statement/Strengths
2. Needs/goals
3. Services and Teaching Environment (Uphold, 2007).

While drafting objectives may enable a student to have some involvement in the development of the IEPs, students can increase their contribution by attending meetings to voice concerns and to participate in critical discussions. It is important for the students’ to feel supported. Some students may want to present at the beginning of the meeting and then leave. (This also gives parents the opportunity to talk frankly about issues that the student might have a hard time hearing about.) Other students may be comfortable remaining for the duration of the IEP meeting. It is important to allow breaks for the student during the meeting, if needed.

Preparing Students to Participate in Meetings

• Teachers can assist by providing students with a way to organize their thoughts: graphic organizers, Venn diagrams, visual representation.
• Likewise, parents and educators can prepare students by familiarizing them with key vocabulary and concepts they are likely to encounter during the IEP process.
• Discuss with the student what to expect during the IEP process. Video modeling in advance has been shown to produce more rapid acquisition and greater generalization than coaching provided in the moment (Charlop-Christy et al., 2000).
• Determine the students’ preferred means of communicating during the meeting. For some students speaking can be difficult, and they may prefer an alternate mode of communicating such as through visual, textual, or auditory means. Provide opportunities for students to participate through the use of video, audio recordings, and by presenting permanent products/work samples.

Educational advocate Catherine Mayes reports what happened when a 17 year old student was finally invited to his own team meeting:

During the past year, about a dozen teens attended meetings where I was the advocate. Preparation and a willingness to be flexible about how the meeting progresses is critical for making it successful for the teen. Painting as clear a picture as possible ahead of time about will what happen at a meeting is also important. Advocates can help by looking critically at what the discussion is going to be, and choosing the part of the meeting, and the length of time, the teen is present, to ensure success.

X is a 17 year old student with AS who attends school in his community. He is innocent, funny, quirky, anxious, and struggles socially and academically. His mother was initially uncomfortable with the idea of him being present at his TEAM meeting. She thought he would become too anxious, and would say some inappropriate things if he attended the meeting. Or worse, she was afraid he would agree to whatever the school offered because he wouldn’t understand the subtle implications of what the school might suggest to him. His mom and I decided to have him meet with both of us to discuss the pros and cons of him being at the TEAM meeting.

He was happy to learn that he had an advocate (me). When we met, he had a lot of opinions and feelings about school. He was confused and upset that his teachers were doing things in a certain way. He had some resentment about not being consulted about his school program. He said that he hated the kind of job he was assigned in his work/study program and wanted to do something else, but hadn’t expressed these feelings even to his mom.

We drew up a list of his concerns. Then I asked him if he would like to go to the TEAM meeting. He wanted details: who will be there, where will I sit, what if I get angry, and will they listen to me? He was also concerned because he had a class at the time of the meeting, and asked if it was OK for him to miss his class.

It was imperative that he felt some control over his situation so he could tolerate the meeting. Although he didn’t say it directly, I made an assumption that a major concern for him was what he would do if he got overwhelmed in the meeting. I explained that if he came, he only had to stay for as long as he was comfortable; he could leave at any time. We arranged a signal for him to use if he needed to leave, and I promised to watch his back. I also told him that since he had told me all his concerns, that if he decided at the last minute he didn’t want to be at the meeting, I could present his concerns to the school—and I really meant it. This seemed to make sense to him. I think he also knew that I really heard his anxiety, as it was visible in his demeanor and body movement.

At the meeting, he sat between his mom and me. I passed him a note reminding him he could leave at any time, and checked in with him several times during the meeting to make sure he was ok. He was great! He asked a lot of questions, and he used the TEAM meeting to clear up some things he didn’t understand.

What happened at X’s meeting that was really important was the TEAM finally heard him. His anxiety was palpable, and the educators saw it. When he asked to change the work team he was on, they agreed. They genuinely hadn’t known that he was unhappy. When he spoke for himself I could see that everyone listened more intently than when his mother or I spoke. In my opinion, his participation helped to shift the way the school understood him.

Resources:

• Christy, M. H., Le, L., & Freeman, K. A. (2000). “A comparison of video modeling with in vivo modeling for teaching children with autism.” Journal of Autism and Developmental Disorders, 30 (6), 537-552.
• Uphold, N.M., Walker, A.R., & West, D.W. (2007). “Resources for involving students in their IEP process.” TEACHING Exceptional Children Plus, 3(4) Article 1. Retrieved [February 1, 2010] from http://escholarship.bc.edu/education/tecplus/vol3/iss4/art1.
• U.S. Department of Education. (n.d.). “Building the Legacy: THE IDEA 2004.” Retrieved May 16, 2009, from ED.gov:http://IDEA.ed.gov.

Amanda N. Kelly, M.S.Ed, BCBA is currently the Coordinator of ABA Services for the SEEM Collaborative. She is a BCBA Mentor for Masters Degree students at Simmons College, an Adjunct Professor at Antioch University and is completing coursework for her Ph.D. in Applied Behavior Analysis from Simmons College.

Catherine Mayes is the parent of a young adult with AS, and an educational advocate in private practice, based in Southeastern Massachusetts. She also works part time at Mass Advocates for Children, and is Coordinator of Plymouth County Teen Programs for AANE under a generous grant from the Edwin Phillips Foundation. You can contact her at catherinesmayes@aol.com.