In April 2012, our ASA chapter sponsored Honestly Autism Day at Towson University. The key speaker for the event was William Stillman, author, speaker and adult with Aperger's. A part of his talk was about the psyche of a person who is non-verbal. He asked the question to the audience, "has anyone ever lost their voice?" of course, everyone's hand went up. He then asked the same question, but added, "for a week?", less hands, "A month?", two hands, "A year?", one hand. He went up to the woman and asked, "how did that feel?" And then, through a stream of tears, she explained all the frustration, anxiety and depression she endured during that time. Stillman, explained that society places the stigma of "less-intelligent" on individuals that are unable to communicate with us in the speedy manner we have been accustomed to and "we may lose patience, become bored or distracted, or dismiss their communication attempts altogether"(Stillman). He stressed the importance of addressing individuals with limited verbal function with an implied intellect and to allow them the extra time they may need to respond.
At that moment, I thought of two of my boys, who were both nonverbal until they entered the Early Intervention system at age two and a half, and then had limited language capabilities for years after. Even now, my 10 year old only uses language when he is being asked to use it or needs something. He doesn't see language as something that is fun, just a tool to get what he wants. And then I realized, I had let his language limitations dictate what I perceived his intelligence to be. It justified my perceptions of his disability. I also realized that I spent most of my day managing him instead of having bonding moments and trying to learn more about him.
So, I began a quest to know my verbally limited 10 year old. I started joking with him, playing music to learn his favorite songs, playing video games with him and working on school work to realize where his struggles were. I treated him like a 10 year old. He had chores and was made as accountable as his overly verbal 8 year brother with Asperger's. When he would resist, we would reply, "you are 10. All your classmates can do this and you can too." Raising the bar and holding him accountable in spite of his diagnosis was the best gift we could have given him.
At his IEP meeting with the school, I encouraged them to increase his autonomy and accountability. I had heard from a friend that his aide does way more for him than we would like and of course he doesn't mind. He's not stupid. Why should he do it if someone else is willing? The team looked at me a little cross, but then I said, "look, he's 10. We only have 8 more years to get it right. We have to use this time to prep him for the next level." Their faces changed and at that moment, they got IT. His schooling is not about today or tomorrow, it is the cumulative effect of the experience.
And with that, our quest to teach him all the things he will need to know about life so he can function as a productive member of society continues. As does my quest to teach people how to deal with my son. I am glad that I was able to shift my paradigm so I could learn more about this wonderful boy that I spend so much of my time advocating for.