Exceptional Children: Navigating Learning Differences & Special Education

Awareness is not Enough

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Each April is Autism Awareness Month. Like most awareness campaigns for health and social issues, it generates a wave of dialogue and activity that rises, then ebbs as predictably as the tide. What does "awareness" mean to parents of children with autism, and to those who think autism doesn't touch them?

Autism awareness was an ambitious goal ten years ago, and still is in many countries, but here in the United States it is no longer enough for me. Awareness that doesn't result in action feels a bit hollow. "Yes, we understand what autism is--we are aware--but we can't do anything about/it's not my job/our school doesn't have the money/we don't have anyone in our family with autism so it's not my problem." A society can be as aware of autism as they are of the weather--but if, like the old weather cliche, everyone grumbles but nobody does anything about it, awareness may then turn divisive, driving our children farther to the edges of community. Some adults still see autism as a dubious diagnosis, a resource-suck on schools and insurance companies. But what of this cold hard calculation: what will it cost society through 60 years of adulthood if in childhood we do not do everything in our power to produce a physically and emotionally healthy, self-sufficient adult?

So now, when Autism Awareness Month approaches, I dream bigger. I dream of an Autism Action agenda, rooted in my belief that we raise adults, not children, and that the journey to independence begins in earliest childhood.

  1. It starts with food. Raise/allocate funding for research and outreach on feeding therapies, and for food programs and nutrition education. Too many children with autism have multiple feeding issues. The National Institutes of Health report that children from food-insecure households are two-thirds more likely to be at risk of developmental problems than those from households with enough to eat. Further, the child with autism may suffer severe lack of essential nutrients due to his hypersensitive gustatory, tactile, and olfactory systems and insistence on eating only a few, often highly processed, foods. With-out adequate nutrition, children can't learn to their full potential, can't "behave."

  2. Raise/allocate funding for sensory evaluations of classrooms and for sensory makeovers of classrooms. Noise, visual clutter, smells, and textures can make learning almost impossible for some of our kids. Sensory classroom accommodations benefit all kids, not just those with autism. See also The Great Indoors: Sensory-Friendly Classrooms that Inspire Learning at http://www.cwla.org/voice/0801 exceptional.htm.

  3. Restore or create Adapted PE programs throughout K-12. Physical education can be a confusing mix of motor skills, rules and social complexity. Adapted PE specialists make modifications to equipment and curriculum so that children with supplemental needs can participate in general education PE with their peers, erasing yet another distinction that may separate the child with autism from his contemporaries. See also All-Inclusive: How Parents and Teachers can Encourage Sports Participation for Children with Autism at http://www.ellennotbohm.com/ listmanager/email1111.html.

  4. Create opportunities for not only participation but for leadership. Many children with autism live with a constant stream of messages telling them what they do wrong or inadequately. But all children are good at something. Creating opportunities for them to lead and teach reinforces their sense of being part of a community in which there will always be people more and less capable. Example: A child who knows his favorite book inside out can teach it to the rest of the class, to a smaller reading group, or to a younger class. He can lead the group in reading it, then ask questions he has written down ahead of time (with the help of teacher, therapist or parent) about the main characters, setting and sequence of events.

  5. Promote curricula that involve independent living skills and trades. I'd like to see some brutal honesty in math requirements. The majority of high school graduates are not headed for careers wherein they'll need advanced algebra, but all will need consumer math-- literacy in salary/benefit calculations, household budgeting, savings, investments, responsible use of credit, tax preparation, how to buy a car, how to rent an apartment, how to calculate a discount. And let's retrieve introduction of the trades from community college and bring them back to high school. Trades are necessary to society, and not every student is headed for college (or should be). Students with autism often have narrow interests but may be highly skilled in a particular area. Encouraging employment and independence through trades is every bit as legitimate as encouraging college attendance.

  6. Jobs. Let's ask employers to create one new job, even part-time, for a teen or adult with autism. We'll provide a short workshop, online tutorial or reading links that will help them design simple accommodations that will allow the employee with autism to succeed.

  7. Transition to college programs. How accommodating a college is to the student with disabilities (federal word, not mine) might be more important than whether it offers your student's chosen major. College administration attitudes ranges from "this is college, deal with it" to extensive services offered. We need a clearinghouse to identify colleges more active in helping students with autism and other learning differences. Disability accommodations at my son's college include supports such as note- taking, in-class aides, sign language interpreting and transcribing, accommodated testing, ergonomic furniture, adaptive technology, alternate forms of print (large print, Braille, audio, etc.), captioning for video, liaison services for navigating services such as financial aid/registration/housing, and course substitutions or modifications. Our kids can succeed at schools that want them to succeed.

Author Walker Percy said, "To become aware of possibility is to be onto something." Being onto something is a good start, but it's not an achievement until it becomes something. When we convert possibility to deed, we move beyond awareness into the kind of action that makes way for our kids to taken their rightful places in their communities, and for those communities to see themselves as the beneficiary.

© 2013 Ellen Notbohm www.ellennotbohm.com

Award-winning author and mother of sons with ADHD and autism, Ellen Notbohm's books and articles have informed and delighted millions in more than nineteen languages. Her work has won a Silver Medal in the Independent Publishers Book Awards, a ForeWord Book of Year Honorable Mention and two finalist designations, Learning magazine's Teacher's Choice Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist designation. She is a contributor to numerous publications, classrooms, conferences and websites worldwide. See www.ellennotbohm.com for more.

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