Passing the Advocate Torch to Your Child
Autism Asperger’s Digest May/June 2013
We as parents need to educate ourselves before our child’s transition to adulthood to prepare him to be a successful self-advocate.
Parents of children on the spectrum aren’t necessarily born with great advocating skills. Developing the ability to fight for your child, without alienating others, is a difficult skill to learn. When my son Eric was first diagnosed with autism spectrum disorder (ASD) many years ago, I suddenly found myself having to be an advocate for him. I knew almost nothing about ASD or my legal rights and had no experience in advocating.
With practice (and lots of mistakes!) over the 12 years my son spent in public school, I felt I could look back and congratulate myself on a fairly good job advocating for the needs of my child. After all, he did survive those school years, good and bad, and was now ready to move on to the next step—college.
From Advocate to Advisor
Just when you may be starting to feel somewhat confident as an advocate, your child leaves the protection of public school and transitions into the unknown world of adult services. No more IEPs (individualized education plans) or IDEA (Individuals with Disabilities Education Act). There are new resources to find in the complicated system of adult services. Again, I felt many of the emotions that overwhelmed me when Eric was first diagnosed. I was scared, confused, and sad. I felt inadequate as a parent and an advocate for my son.
Reality hit when Eric and I had our first meeting with the disabilities services at a large university. We were meeting with the counselor to discuss what kinds of supports might be available to Eric if he were to attend there. The woman we met with sat with her chair facing Eric, directing all of her questions to him and none to me. It was as if I were not even in the room. It was immediately clear that her priority was hearing from Eric, not from me. Her job was to support him in the college setting. When she asked Eric if he thought he would need hard copies of notes in his classes, Eric said, “Hmm. I don’t know” and turned to me and said “Mom, what do you think?” I realized then that I had not prepared him to be the self-advocate he would need to be.
It was a difficult lesson to learn. Eric was 18 and his own legal guardian. From this point on, I would be primarily in the role of advisor to my son, not an advocate for him. He would need to make his own choices and decisions; I would be able only to give him advice and hope he would listen. He would have to ask for assistance on his own. He would need to understand his strengths and challenges well enough to know what he might need and why. I would no longer be able to speak up for Eric about what he might need.
I felt that I had let my son down. I was so focused on being a good advocate for him that I missed out on how important it would be for him to be a good advocate for himself. I thought about all the things I should have done: making sure he was included in all of his IEP meetings, explaining to him more about his rights and why I was working so hard behind the scenes to make sure he got what he needed, pointing out the team that helped him be successful in school and how it’s okay to ask for and accept help when needed, and most important, letting him make more decisions for himself.
The meeting with disabilities services was an eye-opening experience. It changed our plan for helping Eric transition successfully from public school. The following were critical steps we took as parents to help Eric learn how to be his own advocate:
>We began to focus our energies on Eric’s understanding more about himself, where he excels and where he might struggle. When he had experiences that were difficult for him, we talked about why and what could be done to keep them from happening again. When Eric excelled, we also talked about why and his strengths and the supports that helped him be successful.
>We helped him develop strategies to know when he needed help and whom to go to for that help. We designated key people to go to when Eric had problems in different settings. For problems related to his dorm room or suite mates he would go to his resident advisor for help. He would go to his professor or disabilities services provider if he had academic problems in any of his courses. If he was sick or scared or worried, he would call me or my husband.
>We discussed self-disclosure with Eric and when or why he would need to inform others of his diagnosis or learning needs.
>We focused on the skills he would need to take care of himself and to stay safe on campus and in the community. This discussion included everything from how to take care of his personal hygiene to how to determine when he was sick and needed to go to the doctor. We also talked about how to stay safe in his dorm room and how to be safe walking on campus or in the community at night (e.g., avoiding dark, isolated places and staying in lit and populated areas). The functional skills he would need to be as independent as possible became crucial as we prepared for having a less involved role in his life.
Reaping the Rewards
The skills Eric needed to self-advocate for himself took time to absorb and hard lessons were learned when mistakes were made. During the five years he attended college, he had numerous experiences that challenged him. In his freshman year, my husband and I were more involved, making suggestions and frequent reminder phone calls. Fortunately, Eric still listened to us and at times even requested our advice.
Over the years, Eric became more confident in his self-advocacy. Even though we were not as involved with the day-to-day details of his life at college, we still worked to stay involved in his life. We asked lots of questions, dropped by to see him at school, and invited him to come home for visits. We couldn’t control the details of his life anymore, but we could definitely be there when he might need us!
The adjustment to my new advisor role was not easy. Being Eric’s advocate at school meetings and behind the scenes was a big part of my daily life. In the college setting, I never met or talked to any of Eric’s professors. Eric met with them at the beginning of each semester and I have no idea how those meetings went or whether Eric was able to advocate for himself when needed.
Eric also met with a counselor at disabilities services once a week for five years to talk about how things were going and what strategies might help him. I was never in those meetings and did not get an update on how he was doing. I had to trust that Eric was handling things okay and he would tell me if he needed my help.
Apparently, Eric handled things fine. On Mother’s Day 2006, he walked with the hundreds of graduates that day and received his Bachelor of Science degree. As difficult as it was at times, he had learned to advocate for himself and was able to achieve his goal. I could not have asked for a more perfect Mother’s Day gift!
The most important thing we can do as parents is to educate ourselves before our child’s transition to adulthood and try to prepare him to be a successful self-advocate. We do that by helping him understand his strengths and challenges, by allowing him to make his own decisions, and by letting him make mistakes. This is not an easy process, but teaching your child to be his own best advocate is the most important thing you can do for him.
Ann Palmer is the author of Realizing the College Dream with Autism or ASD: A Parent’s Guide to Student Success (Jessica Kingsley Publishers, 2006). She frequently presents on this topic. For more information, go to www.annpalmerautism.com.