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It Takes a (Christmas) Village to Raise a Child With Autism

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We're three years apart, my brother and me. I'm a city mouse. He's a suburb mouse. He drives a big suburban truck. I ride the subway. He works in finance and subsists on Diet Pepsi and cheeseburgers. I'm a latte-sipping, teacher and poet. There's a major cultural divide. On Sundays, his kids go to mass and play soccer. On Sundays my kids set up for the Hope Dinner at my church and study art at the museum. But one thing he and I have always had in common is robust imagination. People with imagination tend to have an easier time valuing and enjoying diversity. I have come to recognize that it is his imaginative powers, as much as his love for a sister, that have moved my brother to "throw down" with truly knowing and loving his nephew (my son) who has Aspergers (a disorder on the Autism Spectrum).

By most estimates, six out of every 100 children are born with autism. Most people who do not have a child with autism in their families fail to understand the degree to which taking care of a child with autism strains families. There is a higher rate of divorce among families with autistic children. Children with autism are more likely to be bullied in (and sometimes by) schools, and people with autism are at greater risk for depression and anxiety than are so-called "neuro-typical" (non-autistic) people. The labor of bringing up one child with autism can be tantamount to that of bringing up a few extra children. Managing the services and interventions for a child with autism is often a part-time job in and of itself. Educating children on the autism spectrum often costs more, per year, than Harvard does. Even the most independent person with autism remains dependent on his or her family longer than most children do. My greatest concern about my son has always been my fear that he lacks enough support from friends and extended family.

Because people living with disability require a village.

This holiday season, many families will spend the day with an autistic cousin, uncle, niece or friend they don't often see or really know. This presents fresh opportunity for finding out who these friends and family with autism really are, and perhaps a renewed chance for families to examine what relatives with autism really need from their extended families.

Children learn to connect with the people in their lives who have developmental disabilities by watching their parents. When parents model the imaginative generosity needed for forming substantive relationships with their relatives with autism, their own children learn how to be imaginatively generous too. And there's a bonus -- so-called "normal" children who learn to connect with a cousin who has autism wind up mastering essential ethical lessons that extend beyond the sphere of awareness as it relates to persons with disability.

One of the proudest moments of my life happened a little over two years ago when a mother sidled up to me after a theater production to (for lack of a better word I say) 'congratulate' me on my daughters' performance. The performance in question did not take place on a stage. I had to find out on the playground that my two daughters had challenged a teacher who had chastised a camper thus: "What are you? A 'special needs' student?" It seems my daughters, who were about 14 and 10 at the time, stepped forward and gave the irascible clown (He really was a circus arts expert) a piece of their two minds. In the presence of a large audience of campers, my girls challenged the anger management-challenged clown, proclaiming that as siblings of a boy with special needs, they were outraged by his prejudice.

I don't doubt that my girls would have voiced a similar degree of indignation had the clown made an ethnic or homophobic slur. Life with their brother has helped to teach them that silence in the face of bigotry, is always tantamount to consent. To some, their defense (of children with special needs) might seem valiant. To me it did. But it was a no-brainer for my girls. As they saw it, their protest was not beyond the call of duty. It was duty. It was what decent people do. It wasn't lip service. It wasn't grandstanding. It wasn't soapox. It was good women speaking up so that evil wouldn't triumph.

Indeed having a sibling with with autism is a challenge, especially in adolescence. Which is why the siblings of children with autism need that village too.

Their father and I have never exhorted our girls to crusade on behalf of their brother with autism, but growing up alongside him has expanded their souls to the extent that not defending him in the face of prejudice becomes unthinkable. My daughters see past their brother's autism. They see who he is.

In a broader sense, imagination is the antidote to bigotry in all its guises. Imagination teaches children to cherish gifts in those who are unlike them. Imagination militates against shallow competitiveness. Imagination teaches children to value the contributions of the individual in a world (theirs) that tends to overemphasize conformity, winning and "fitting in."

We rented a little boat early one morning in glorious Montauk, Long Island this past July, my brother's family and ours. Because the vessel we rented was small, our two families had to go out onto the lake in shifts, and it was determined that the ladies would go first. My sister-in-law was packing an assault weapon-sized AK 47-looking, paparazzi-worthy camera designed to capture action shots. I was packing a big hat, a latte to go, a memo pad and a felt-tip pen. When the motorboat arrived at the right spot in the middle of the lake, my daughters and nieces jumped into the water, clambered atop the big buouyant disk-shaped tube wide enough for three to lie face-down, and clutch the handles, waiting for the craft to zoom off. The boat took off with a speed that almost alarmed me -- and then it accelerated.

The "city mice" girls looked only terrified enough to be officially thrilled, but I worried, as I watched, about what would happen, later, when my son went out with his father, my brother and my nephew.

The nephew is my son's age; he's an athlete. My son runs track, but doesn't much like sports. My son spent the summer in school and therapeutic sleepaway camp. My nephew spent it learning to box and working construction. My son struggles with academic tasks but is highly intelligent in many areas. My nephew's mind is like his father's, about as facile as minds get. My nephew is adept at water skiing. My son swims well enough, but doesn't like to be cold, and like many children with Aspergers he struggles with fine motor challenges. I knew my son would be safe from a swimming competency standpoint, but I was afraid he might get cold, become distracted, panic -- I was afraid his anxiety might get the best of him. I feared he might not be able to hold on tight enough to stay atop the tube. But most of all, I worried that he'd come away from the experience feeling like he had failed. He's a person. People fail. But failure is hard for people like him, because people like my son are often treated like failures, especially by their peers, when even when they are succeeding heroically.

It takes a principles, vigilance and creativity to raise children who can see these successes. The compassion aspect of interacting with a person with disability can be incorporated into religious education, but unfortunately, conventionally religious parents are often the ones who most often drop the ball on this, especially when a "there by the grace of God go I" strain of condescension characterizes their way of relating to a friend or family ember with disability. I am always surprised to see how little emphasis families with "religious values" place on the sin of prejudice. Parents who stress obedience to doctrine while underemphasizing individuality not only risk rearing narrow-minded children, they may also wind up cheating their children out of developing their facility for religious discernment. As a person of great faith who practices a religion, I know that people with well-developed imaginations grow up to be more conscious worshippers. As a teacher, artist, writer and unofficial thinker, I know that greatness of any kind is rarely attained by individuals who are short on imagination.

The desire to fit in is a driving force in most adolescent children, yet children taught to be generously imaginative are more likely to question those who demand that they conform. A more imaginative child is both more likely to become who he or she really is and less likely to dismiss a cousin or friend with ticks, perseverative behaviors, odd speech patterns or difficulty making eye contact. The generously imaginative child is more likely to grow up to know how to support a relative or friend who is coping with the challenges of developmental disability.

Parents who teach their children to adopt a distant, polite approach to people with developmental disability do no one any favors. They teach condescension. They cheat their children and themselves. They reinforce the idea that it is acceptable to withhold love from those they might somehow deem defective. The willingness to marginalize and render invisible one's fellow human beings grows out of this mentality. All people who live long enough eventually become "defective" through old age, and ironically, the defective kid with autism is sometimes the one who makes his first million by the age of 30.

When I observe the ease with which all of my three children relate to the indigent, the odd, the aged, the infirm, the non-English speaking, and the developmentally disabled, I realize that growing up in a family with autism helped them in this. When I see how comfortable they are with religious and ethnic diversity, I know that growing up in a family with autism helped to build this light in them. All children deserve the chance to learn this lesson. I am glad my brother has chosen to impart this and I am grateful for how well my nieces and nephew have mastered it.

I recently found myself marveling over this mastery and my brother's choice to "thrown down" with being part of my son's "village." As a result of the choice, my brother's children are learning imaginative compassion, and my own feel as if they have family beyond our nuclear one. More and more I see my brother and his wife taking time to make the effort to get to know their nephew (my son) with autism. I see my nieces and nephew following their lead, learning (from their parents) to see past the awkwardness, to ignore the ticks, to understand when the cousin with autism needs a little "alone time." Through observing my brother and his wife as they rise to the occasion of getting to know their cousin with Aspergers, my nieces and nephew learn imaginative generosity. Generosity and imagination help my nieces and nephew to notice my son's gifts, talents and charms. They see in their cousin a young man who need not be defined entirely by having Aspergers. They learn to goof around with him. They benefit from the awareness that their cousin is first and foremost a 16 year-old dude. They learn when when it's okay to crack an Aspie joke.

This application of this wisdom goes way beyond family and friendship. As an educator I know that the developing imaginative capability extends outward into all precincts of a child's life. A child in whom generosity and imagination are fused is likely to grow up to be a better engineer, a better linguist, a better artist, a better doctor, a better lover, a better citizen, a better parent, a better adult child, a better sibling, and a better friend.

My son's same-aged male cousin impressed me so much during the aforementioned July trip. Although he is way ahead of my son in maturation, academics and independence, his same-age, same-sex cousin is now able to note his cousin's strengths. My son can't put a spin on a football, but he can play "Paint it Black" on the guitar. lecture extemporaneously on the Beatles, and crack wise with the best (or worst of them as the case may be!) on the topic of Howard Stern. Maybe he will never drive a car like his cousin does, but my son negotiates the NYC subways and downtown Manhattan with élan. Because the cousin's imagination is as good as his jump-shot, my nephew can extrapolate on the matter of my son's "cool" quotient and see beyond the Aspergers. He can make the imaginative leap -- which is also a leap of spiritual/religious faith, for those who believe/practice a religion.

I know there are times when my son seems odd to friends and relations; I'm "neuro-typical" --sometimes my son seems odd to me, too! But what my young man describes when he characterizes the way being with his cousins makes him feel -- is a neuro-typical sentiment. The most thrilling moments of his life have been those shared with extended family. He may not use the word "village," but it is indeed "the village" which my son describes and for which he yearns.

As it turned out, on that July morning on the lake, my son's novice (aquatics) status posed no hindrances to his acquatic bad-assness. There was speed, but he loves speed. He held on because he didn't want to fall off, and he was just terrified enough to be thrilled. For the purposes of that moment in water sports history, my son was a normal cousin.

So, as I look forward to celebrating during Christmas week with my brother and his crew, I find myself thankful for the Delaware chapter of my Brooklyn son's "village." Until recently, I sometimes thought my brother was doing all the giving -- but I have become aware, lately, of how much my brave and gentlemanly son gives back. He gives as good as he gets. My son is the gift who keeps on giving; he improves all who really love him.