Awareness vs Acceptance on Autism Day
By: Stefania Almeziab, M.Ed
My knowledge of Autism Spectrum Disorder was much like that of ADD or ADHD. I would get to know my students, review and implement individualized education plans, work in a quick How-To read between massive amounts of paperwork and planning. I was getting by on awareness. I was aware they were in the room, I was aware they were in my life, and I was aware that, much like my English Language Learners, the terror of not giving them what they need draped my shoulders in wet blanket through every lesson. Maddie S., a senior with Aspergers put it in my face last Friday; awareness just isn’t enough.
Maddie approached me after I donned a red hijab in silence, promoting the International Women’s Day and Day Without a Woman protest of rights violations against females worldwide. She asked if I would consider wearing a green headscarf for Autism Acceptance Day, April 2nd. Still on fire from my new found, tiny toe dip into the activism pool, I enthusiastically said yes. Such a simple word, yes, and yet powerful beyond measure.
Maddie painted a David and Goliath-esque scenery; Autistic individuals and their families, with varied traits, fighting against being lumped together by “light it up blue,” puzzle-piecing Autism Speaks Awareness Campaigns and their aim on curing what they see as a ruinous disease. Maddie educates me on the term and importance of neurodiversity, different ways of thinking, and articulates that Autism Spectrum Disorder is an umbrella term that covers Autism, Asperger’s Syndrome, PDD-NOS, and Childhood Disintegrative Disorder. The green she is asking for is paired with black to symbolize balance, growth, life, power, and double-bird middle fingers to the sky-blue of her betrayers. The yes unleashes the no more.
The no more of Maddie’s request turned campus-wide event included a formal argumentative research paper, a well-organized editorial style piece on Autism Speaks, and her completion of a speech and 20 slide PowerPoint presentation, which she would deliver to all four of the English classes back to back, including student-driven Q & A, all while being recorded by Luis Perales, our C.E.O. She was fed up with awareness.
On Friday, the day dedicated to Cesar Chavez and his fight far flung past awareness, I watched staff, teachers and students wearing green and black rally to support one individual’s passionate enterprise. The day before the event, Mr. Medina gave students in his entrepreneurship classes a preview of ASD so they might be more inclined to sport the cause colors. Snook’s Student Service Learning Project class cut green and black strips of fabric to hand out to students who were less participatory or more forgetful, so they could headband in solidarity. They created green posters shouting black-lettered slogans and hung them around campus. I held my breath with more hopeful anxiety than I knew what to do with or where to put.
First period was a dry run. Mine and Maddie’s balloon burst before we’d even blown it up, as one student clearly vocalized the poster hanging in my room that read in black and white block lettering, IF YOU KNOW ONE PERSON WITH AUTISM, YOU KNOW ONE PERSON WITH AUTISM. They followed it up with a dismissive, snarky toned, “I don’t get it; that’s stupid.” The words sprayed me like shards of glass as I watched Maddie’s posture bend; an SSLP student who worked hard on the production of the message got visibly smaller as well. I think about the universal truth of the ability to understand, and I think of how easy it is to label something as less than when we don’t. Maddie pressed on; she is a veteran.
Throughout each of her performances, she was a tower. Calm and unswaying, stopping only for a sip of water here and there. She explained Autism and Aspergers from her perspective, and criticized institutions in the U.S. that stigmatize children and adults with ASD, causing lifelong trauma. Citing a program called Quiet Hands, Maddie relayed their method of “normalizing” those with ASD who use hand movements to self-soothe. By strapping down their hands in a Pavlovian effort that uses the words “quiet hands” in lieu of a bell, subjects are trained out of the very behavior that comforts them in moments of disquiet. Another American agency still in operation in Massachusetts, The Judge Rotenberg Center, “cures” Autistic behaviors through sleep and food deprivation, forced inhalation of ammonia, and electric shock therapy. The United Nations has denounced these acts as torture.
Many critics convey a direct link between the afore mentioned JRC and Autism Speaks, whose opinion piece, “A Call for Action,” likens the Autistic child to a missing child and a child that basically destroys everything and everyone in their path. The spectrum is wide and varied in behavior and cognition, and their description does not provide a full picture; the Autism students I know and interact with five days a week are nowhere near the human tornado described in the article, and certainly are not missing.
The Q & A sessions held a few glimmering moments of true understanding, but when students were hand-fed a line of questioning by Mr. Perales to help them make connections between the individual fights against stigmatic injustices and actively supporting one another’s causes, the wind over their heads could have parted their hair. Further muddying my naivety, Maddie was asked how she is treated at our school and her honesty confirmed we teachers only think we are winning the battle for enlightenment. She said the students make jokes at her expense and about Autism, but that she had seen the same people doing good things, in a shade closer to the mission of our high school, and this made her think they could change. Her answer mapped the wide distance between the definitions of “awareness” and acceptance, and pin-pulled the floodgate of reality, rushing me deeper into the yes and the no more of work still left to be done.
I began thinking about my other students, not just my kids with IEPs or my ELL kids, but all of my kids. Am I just aware of them or accepting of them? Should I be one or the other? When Googling the definitions of awareness (knowledge or perception of a situation or fact; concern about and well-informed interest in a particular situation or development) and acceptance (the action or process of being received as adequate or suitable, typically to be admitted into a group) I realized they are inextricably linked. Knowledge paves the pathway to true perception and concern and there cannot be an action or process of reception and admittance to the larger group if we are not aware from the start. That same student who labeled the poster as stupid due to a lack of knowledge is the same student who made a pledge after Maddie’s presentation to stand up for her, should the need arise. The antidote to prejudice and it’s progeny of stigma, marginalization, and, eventually, public policy is so simple we almost can’t catch it. Knowing someone who is placed in a group, either by choice or societal force, automatically disintegrates the label into human form. Fill in the blank of that poster: if you know one person with Autism; if you know one immigrant; if you know one inmate; if you know one teenager, then you just know one. If I hold a snowball’s chance of inspiring my kids to be more than just good students, to be good humans, to say yes and no more, I have to consciously knit the gaps between awareness and acceptance within myself first, otherwise I am again a hot wind-bag of hypocrisy.