Mom typing here…
Everything my son had written before this was just a stream-of-consciousness exercise, followed by a few hours of editing. In an effort to get through the end of a homeschooling book on Middle School English at the beginning of summer, I found a chapter on composition, and used it to help him organize his next essay–a challenge, of sorts. I asked him to write about whatever he wanted, to set a plan for his composition, and do his best to stick to this plan to the very end. The outline below is what he came up with, and we reviewed it at the beginning of each writing session. I’ll let you be the judge as to how well he followed his initial outline in the end.
He typed all of this on a keyboard, which was the second challenge. Everything he had “written” before this was tapped out on a letter board. This time around, he had to type it out, using two hands (which really meant using one finger from each hand). Typing is very hard for him, and we are still working on it. His hands often shake as he tries to hit the right key, and he needs to hit the “Backspace” key nearly once a minute.
I’m going into all of this detail, because I am so incredibly proud of him for this essay in particular. This was a lot of work for both of us–for him to type, and for me to cheerlead from the sides. And by “cheerleading”, I mean pulling on his hair to give him input, dragging his hands from his lap back towards the keyboard, handing him various acceptable objects to chew on (rather than his hands), standing up to give us both breaks, and then working up the willpower on both our parts to walk back to the table and put in another half hour of painfully slow typing. Despite all of this, he finished the assignment. And I think it’s his best writing to date.
[ORIGINAL] IDEA
I want to write about my desire to go college and study science to become a science writer. Using those examples as a starting point to bring up other reasons why autistic people deserve an education.
TITLE
Just When You Thought I Was Done Talking About Autism: My Plea for Others
PURPOSE
To explain why autistic people must be educated and included.
AUDIENCE
- Uninitiated people like other parents, educators, and policy makers.
- Audience doesn’t know everything I know
- I will attempt to convince them that some autistic people want to go to college and pursue a career
BRAINSTORMING
- Every child with autism out there wants to be rescued. I was only one of them who was lucky enough to be rescued. (INTRODUCTION)
- I want to talk about how my inability to talk does not adversely affect my overall ability to communicate (MAIN BODY)
- I want to discuss the importance of teaching non-speaking kids a way to communicate (MAIN BODY)
- Only because of Shannon (and Inga) did my mom understand that I was in there. I am grateful to her for teaching my mom how to deeply understand me. (MAIN BODY)
- I am not the only kid out there who was misunderstood; there are more of us out there. (MAIN BODY; CONCLUSION)
- Everyone is allowed to dream, but only some of us are allowed to change the world. I am a rare case of a kid whose intellect was discovered (MAIN BODY)
- Everyone deserves a chance for an education and a life of deep, meaningful purpose (MAIN BODY)
- To ask my audience if they can envision a world where everyone is included (CONCLUSION)
- To please not exclude autistic people from their peers (CONCLUSION)
The thing about non-speaking autism is that just because you cannot talk does not mean that unlikely miracles will never happen. I am one of those miracles, thanks to the amazing happenstance of several lucky coincidences that led me to Rapid Prompting Method (RPM). Finding a method for getting my thoughts out of my head finally allowed me the chance to wrestle with a keyboard, despite the painfully long experience my mother must walk me through to get my words out.
Being profoundly autistic means you have unusual proclivities that prevent you from being just a normal teenager, living life independently, who finds meaningful ways to pass the time. Nothing I do manages to make my days pass quickly. Being the object of your very well-meaning sympathy does not help. I mean, seriously, how much can you expect me to endure as a person with nothing to pass the empty, excruciatingly long minutes upon minutes of each hour, every day of my life? I realize that you must get tired of trudging along with me through these repetitive essays. I get it: I am obsessed with autism. I try to explain myself to you so that others who can’t are understood.
Nothing you most likely understand about people like me is entirely accurate. Allow yourself to imagine how hard it is to write this essay by typing each word individually. Everything is autistically difficult, and I know my mom becomes frustrated with my inability to control my fingers, despite incredible effort on my part. Make no mistake: you are reading my own words that I have brought to this page with extreme effort. Using my intellect to write this gives me satisfaction beyond words.
I am writing on behalf of those who not only feel trapped by non-speaking autism but who are also locked in their homes, quietly desperately dreaming for change. I am only one child who is trapped behind his autism. Imagine how many more of us are out there, waiting to be rescued. It hurts my soul to imagine how many others can’t express their thoughts, needs, and desires. Something must be done before more destruction is wrought and more lives are left unfulfilled. No one understands this better than me, a boy who was only made whole thanks to some luck and coincidence.
I’m only able to communicate this effectively because determined people were able to convince my mother that there may be something to this “RPM thing”. Inconceivably difficult, my mom now has to get me from a special education classroom to college, without having a map to guide her. However, getting a college degree isn’t the only reason I should receive an education. I deserve an education because relegating others to do nothing all day is cruel and inhumane. There are many of us out here, agonizingly bored. Giving non-speaking people an education would change lives by allowing them to fulfill the human right to love themselves and the world around them. Getting an education allows just that: creating a connection between what is inside one’s head and that which surrounds oneself.
There are many more kids like me out there, waking up each day wishing to be rescued by a Shannon or an Inga. Find them. Get them the help they autistically deserve. I’m begging you to hear me. Go henceforth and rescue them from an insipid existence without meaning or the means to make meaning possible. You must believe that there are some among us who can and will change the world.
I was once one of those kids who was certain that help was never coming, secure in the knowledge that my life was preordained to be indistinguishable from one day to the next, not to mention autistically destructive for my family. However, you may have noticed that things have worked out finally for me and I have a future to look forward to now.
I am allowed your attention due to the fact that autism talks through me and demands that attention must not be solely paid to those speaking loudest. You must take action on behalf of quiet, meek kids who don’t rock the boat but nevertheless get ever more vocal on the inside…kids who are desperately yelling for someone to yank them from under their helplessness and funnel that agony into more effective communication. You must not assume that all individuals with profound autism are intellectually disabled. Instead, you must consider the possibility that they are actually capable of virtually anything they want to do, if given the chance. You need to make opportunities available to children and adults who enjoy learning even if their needs are monumental.
The child who deserves your faith and love is the autistic child who simultaneously causes you the most heartache and destruction. You must believe that this child is also autistically struggling to battle their own demons. These demons are always there, waiting to smack us down with reality, reminding us of the limits placed on us by this disability. We are innervated by our autistic need for more input. Energized by seeking to distance ourselves from your demands. Risking another meltdown adds only more pressure when we are tasked with doing something that leaves us drained. You believe we are avoiding demands. Instead, we are simply seeking a new sensation that will allow us to stay in one place.
Families’ and educators’ desire to manage children’s next meltdown rather than focusing on useful ways to increase independence is obviously problematic. Having too much time on your hands is another problem. What autistic people need is maybe hard for one person to say. But at least find a quiet place to explore the possibility that your child or student may be inside, stuck behind a wall of autistic insecurity and silence.
Forget what you think you know about autism. Start envisioning a world where autistic people enjoy the chance to dance on the edge of the waterfall of possibility. Give us room to fall while encouraging us to keep going. Only the overachievers among those who are profoundly autistic would allow themselves to dream of total unbridled independence. But a high measure of self-determination goes a long way in bringing us closer to having a better quality of life than we would have otherwise. The independence piece is determined by each family based on the nature of their child’s level of need.
Having the tools with which to free oneself from the limits of autism unleashes a flood of happiness that makes a once isolated and bored autistic person now instead dream of a life filled with variety and goals. Just because we appear to be healthy and dealing with our situation without complaint doesn’t mean that we are leading a truly meaningful life. Some of us require more. Set us free. Let us experience the energy of determining our destiny, to the extent possible, given our significant support needs.
Please believe me when I tell you that not all non-speaking autistic people are intellectually disabled. We are a motley collection of badass autistic siblings, warriors, and jaded kids who narrowly escaped institutionalization by a few decades and would like at least as many maddeningly simple rights as our non-disabled peers. It is unlikely each one of us is bound to be a genius. However, some of us may turn out to be world-changing experts in extremely specialized topics that benefit from our autistic perspective. The risk of not giving us useful tools to find our purpose is one we should avoid if we consider ourselves to be an advanced society that values each person.
The true measure of a just society is how it treats its disabled members. Quite an idea. Should we decide to accept this mission, everyone must be included and assumed to be potentially relevant. Some of this might even necessitate an eventual rethinking of what it means to be disabled. Only time and generational transformation of our understanding of autism will allow us to really know what some non-speaking autistics are capable of.