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A whole new way to engage autism

Welcome parents, caregivers, and professionals! Our new nonprofit invites your engagement in services that provide support, guidance, and education. We’re here to empower young families living with autism.

Your relationship with your child is so important to his social and emotional well being — now and throughout his lifetime. You spend the most time living with and loving your child. You have the greatest commitment to his development and lifelong happiness. But autism can make it hard to connect with your child. And because each child expresses autism in an individual way, it can be a confusing, frustrating, and time consuming process to find ways to support your child’s specific needs. We know. We’re there too.

We believe that parents are the key to lifelong success for children living with autism. It is, after all, a diagnosis that involves the whole family. Our volunteer board of directors, our writers and our presenters are all personally engaged with autism. It is this personal connection that fuels our passion for sharing, with you, what we know. We are dedicated to building bridges between research, practice and everyday life. It is at this center that engagement, true engagement, begins.

Here, families are the center. We offer education from experts,  how the latest research affects your family, and strategies that benefit your child. And we’re always looking for ways to grow. Explore with us the many possibilities of living with autism.

We’re here to help foster your child’s growth and development – and realize the joy of nurturing your child. Join our blog where we provide a place for everyone to learn and grow.

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Warmhearted Inclusivity: How we view and serve the autism community

This piece first appeared on On Being, 3/12/16. It is reprinted here by permission from the author. Sign up for Chris’s five-day course in Unlocking Potential: Using the power of poetry, song and autism, August 7-11!

Bill and I are staring at a red-tailed hawk that lives at the Hallam Lake Nature Preserve in Aspen, Colorado. Many people assume that Bill, a 28-year-old with “classic” autism, lacks crucial human characteristics like empathy, theory of mind (the ability to intuit someone else’s perspective), and a nuanced attention to language.

On the surface, these assumptions might seem justified — Bill flaps his hands, has difficulty making eye contact, labors to carrying on a conventional conversation, and struggles to complete tasks as mundane as buying breakfast at the local coffee shop — but on this particular day Bill is going to prove all those people wrong, by writing a poem.

For decades now, a majority of professionals working with autistic kids and adults have chosen to single out social deficits like Bill’s for rigorous therapeutic attention, devoting immense time and effort to ridding them of autistic behaviors that diverge from the neurotypical norm. It turns out that most of these deficits belie an overlooked or undervalued strength. For instance, one of the several deficits listed under the diagnostic criteria for ASD (autism spectrum disorder) in the DSM-5 is a predilection for “highly restricted, fixated interests that are abnormal in intensity or focus.” In most cases, when a neurotypical person displays this same predilection we say they have a passion for something. One person’s restricted interest is another’s area of devoted study.

As a poet, I’ve always been fascinated by the inherent strengths of autistic writers, among them their care for the specificity of language, their sensory intelligence, and their ability to recognize patterns in sound and sense. A surprising and increasingly well-documented reciprocity between poetry and autism has taken shape, over the years, and it’s helped highlight a possible shift from the deficit model to a new approach where inherent strengths are given equal attention.

When we first arrived at the red-tailed hawk’s enclosure, our guide informed us that the raptor became a resident of Hallam Lake after a broken wing left it unable to fly. Upon hearing this news, Bill jumped up and down and grunted passionately. He seemed genuinely upset. To me it was an explicitly empathetic reaction, though Bill was too stimulated by the information to confirm his reaction verbally.

This is one of the problems with judging empathy. Research has shown that empathy is actually a process: it begins as emotional empathy, is translated into cognitive empathy, and is finally expressed using motor empathy. A 2009 article by Scottish researcher Adam Smith showed that people with autism actually possess more emotional empathy than their neurotypical counterparts, but significant challenges with cognitive empathy (understanding their own reaction) and motor empathy (communicating that reaction in a legible form) often make it impossible for their initial, emotional reaction to make itself known.

We were accompanied at Hallam Lake by an assortment of staff from Ascendigo, a non-profit serving the autism community through a rigorous mix of outdoor activities, sports, life skills, employment opportunities, and, increasingly, intellectual enrichment like creative writing. I had prepared a writing exercise for Bill and three other young men with autism. I asked them to pick one of the three protected raptors at Hallam Lake and study it closely, paying keen attention to what the bird hears and sees. I called this challenge a “Bird’s Eye” poem and wanted them to communicate the experience of a bird from the inside out, despite the fact that readers of the DSM-5 would imagine this task was beyond their social understanding.

Since Bill often finds the motor process of writing difficult, Diane Osaki, his brilliant and devoted occupational therapist, began by asking him some generative questions. At first, Bill’s responses corroborated the common prejudice that he lacks theory of mind, or the ability to imagine what another’s experience of the world might be:

The hawk is looking at me
The hawk is smiling at me

These first two lines of his poem seemed to confirm an autistic worldview, going back to the etymological root of autism: self-focused. But then Bill slowly allowed the bird’s own experience to enter and overtake the poem:

He spreads his wings
He scratches his feathers

Notice the shift in address from “the hawk” to “he,” demonstrating the autistic penchant for personification, wonderfully articulated in a recent paper and talk by poet and professor Ralph James Savarese. Personification is a common poetic trope, but even more common among those with autism, and it reveals their inclination toward warmhearted inclusivity.

Autistic thinkers welcome the participation of animals, trees, objects, and even weather into our human world of thought and action. The neurotypical brain is often too busy prioritizing strictly human content to sift through the rich, more-than-human world around them.

In this sense, the neurotypical brain possesses its own highly homogenous restricted interest: human social interaction. A great poet, however, must ground her work in sensory observations that move past the limited transactional nature of the purely human to get at the vast “real world” going on all around. And that’s what autistic writers do naturally:

The hawk hears rustling leaves
The hawk wants to fly
so he hears

For someone with profound language difficulty, a word like “rustling” is remarkably apt, and it sets the scene for a lovely aural trio linking the “L” sounds of rustling, leaves, and fly. But these final lines seemed unfinished at first. Diane kept asking what it is the hawk hears, and Bill repeatedly indicated that the poem was complete.

To our ears, the sentence needed its final noun, but Bill saw (or heard) it differently.

I stood next to him, watching the hawk tilt its head upward, searching the trees and the sky beyond them, shifting focus to listen to an airplane in the distance. That’s when I realized that Bill had successfully adopted the bird’s eye (or ear) view. The poem was finished precisely because the hawk had a broken wing. She couldn’t fly out to meet these sounds and sights, as much as she clearly desired to do so. She could only hear flight as it was embodied by distant airplanes and other birds. Not only was the poem complete, but through its seeming incompleteness it dramatized the life of a bird who had been cut off from its central ability.

Perhaps it’s time to reimagine how we view and serve the autism community. A social deficit, like attending equally to all facets of the environment, can be restaged as an ethical strength, enlarging what we care for and about. We often demand that people with autism learn how to act more like “us,” some specious version of normal. But what if we spent more time trying to understand how each individual voice, precisely because it is different, might contribute to a larger and more invigorating conversation about who “we” are and how we’re changing to meet an increasingly complex and diverse world?

When we think of unique and caring individuals like Bill as a collection of deficits, we not only risk alienating them, but also the parts of ourselves that exist necessarily outside the so-called norm. We must remain open and assume ability, so we don’t miss out on crucial lessons like the one Bill taught us this day at Hallam Lake, as he deftly tapped into the vicarious life of a crippled bird.

Toilet Training with Autism

from a CEA parent

My son did not toilet train completely until he was in elementary school. Before he was diagnosed with autism, we read the parenting books written for typical kids. I listened to the other parents in Early Childhood Family Education discuss what they were doing for toilet training and learned that the average age to toilet train was four. Ok, I thought, we have time.

Then our son was diagnosed with autism. We still kept up with the toilet training methods that had been recommended. We dutifully sat him on the toilet – first a little portable potty, then the big toilet with a stool under his feet. We sat and looked at picture books and photo albums, waiting for something to happen and for him to make the connection when it did. When there was finally some “movement,” he looked stricken and immediately cried. He didn’t want to do that again anytime soon, no matter how many times we read Everyone Poops.

We went to a behaviorist. Our son was not conversational at that point, but he seemed to “get it” as the man helped him to understand there was nothing to be afraid of when going to the bathroom. His anxiety seemed to lift after a series of appointments.

And although I had read that many kids with autism take longer to toilet train, all the other kids with  in his school program seemed to have the process down, and were independently using the toilet by the end of preschool while he still needed assistance. Discouraged by our own son’s difficulties, but determined to help him, we read Maria Wheeler’s book Toilet Training for Individuals With Autism Or Other Developmental Issues, which was helpful to collect information geared to a child with autism. We implemented many of her suggestions, including staying on a schedule and how to use rewards effectively.

We talked to his pediatrician. Since our son tended to constipation, we tried Miralax. When that didn’t help, we tried Milk of Magnesia, which helped a little bit, but not enough to make sitting on the toilet a success.

Eventually, he did start to get the idea of urinating in the toilet, but only if he was sitting down. It took a couple of years before he would try standing. And still no luck with a bowel movement in the toilet. 

And then we went to Anne Dudley’s toilet training class. Although the book had been helpful, it was even more helpful to hear information, methods, and encouragement in person from a teacher who “got it.” She was articulate and straightforward, and patiently answered questions from participants, including my own concerns. There was solidarity being in a group of other parents who were working on the same thing with their children. It helped my motivation and helped me persevere.

It gave me the renewed energy to take the next proactive steps. Although true that many kids with autism simply take longer to master going to the bathroom independently (so that much patience with the process is needed), sometimes there are also extra issues. Although we had already been to the doctor to address our concerns, the seminar gave me the push to consult a gastroenterologist for more problem-solving. It led to a hospital test and medical aid to help “clean him out,” and then eventually to probiotics, which is what finally helped his body to function “correctly” so that he could do his business.

Not everyone’s issues in the class were like ours and some had younger children who were quite close to success – their parents were just looking for that last bit of help to get the job done. As always, there is a lot of variety in the autism diagnosis, so each parent’s child was at a different point in the journey of toilet training. Sometimes our kids need a little extra help to learn, and as parents we need a little extra help to know how to teach them, even with a natural body process. Learning information from a trusted expert and with a community of parents helped all of us to take the best next steps for our child.

Join us for our next Toilet Training class on April 18 and access Anne Dudley’s tried and true tips!

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