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Families Dealing with Autism Grapple with the Pressure of the Holidays - The Woodlands

Families Dealing with Autism Grapple with the Pressure of the Holidays - The Woodlands

Published: Nov 21, 2014, 11:00am

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The holidays are a time for family, tradition and lifelong memories for most Americans. For families with a child on the autism spectrum, the holidays can be a time of unreachable expectations, societal pressure and sadness—as a typical holiday experience looms out of reach.

“From Oct. 31 on, we’re on a train that won’t stop. We are looking forward to January 1st,” says Amy Wood, president and scientific advisor of Families for Effective Autism Treatment (FEAT-Houston) and the mother of a child on the autism spectrum. “For many families, a kid with autism is not so welcome at family and community events, and the family feels isolated because the child can’t be successful.”

Many of the things that make the holidays special cause big problems for people with cognitive disabilities. Around town, public spaces get more crowded. Schedules go by the wayside, and the familiar routine that alleviates many kids’ anxieties are upended. Special foods are introduced to the diet, which can be tricky for a population in which over 50 percent have digestive issues such as gluten intolerance. Throw in a large family and holiday travel and the regular stress levels that accompany the holidays can be multiplied by 100.

“All the noise, the conversations with a lot of people talking at once and interactions with people you may only see once a year can be overwhelming,” says Paul Louden, co-host of the radio show Understanding Autism. Louden is an adult on the autism spectrum and autism-awareness advocate. “People want to give you hugs and make lots of physical contact. They may try to joke around with you, and they engage in a familiarity you may not understand. The holidays can lead to a lot of problem behaviors from surprises that don’t happen in everyday life. A person on the autism spectrum may not know how to respond in a way that seems socially positive.”

A few steps can help families with kids on the autism spectrum make the holidays more positive and less about their failure to live up a picture-perfect standard.

Set achievable goals: Most parents want their kids to behave well and look good in front of the extended family during the holidays. Kids on the autism spectrum feel this pressure, but they may not be able to rise to the occasion or understand why their behavior is extra-important at this frenetic time.Pick a few important details and work on getting them right ahead of time. Take time leading up to the holidays to model the behavior you want, visit key locations, or watch the Christmas TV specials the extended family will want to enjoy. Set realistic expectations when it comes to family meals, travel plans and group outings.

“A lot of what we need is acceptance,” Louden says. “To have someone say, ‘I hear you have a problem and you need to go to your room to calm down. That’s okay. Let us know if you’d like to come back later.’”

Pick your priorities: You can be sure that a child will not be able to model good behavior the entire Thanksgiving holiday weekend. Choose a few things that matter and resolve to let go of the rest. Wood, for example, has tried out some Thanksgiving foods with her son, but will serve him a hamburger and fries if that makes it easier for him to sit with the family and participate in a holiday meal. Over 50 percent of kids on the autism spectrum have gastrointestinal issues, and many are sensitive to smells. Don’t worry about the turkey dinner and cranberry sauce being an integral part of the holiday. Likewise, once everyone’s enjoyed a lengthy meal, it may not be the right time to suggest that guests pile in the family car to view Christmas lights.
Keep your child on schedule as much as possible: Families may need to tag team during holiday visits from relatives. Kids on the autism spectrum find comfort in their routines—when schedules go by the wayside, autistic kids can revert to undesirable behaviors. One parent can help keep the child on task, while the other entertains guests and takes care of holiday details. Louden explains that for him, memories don’t have the sentimental pull as they do for “neurotypical” people. He doesn’t attach emotions to the different aspects of a holiday. A familiar schedule and set of activities may be more important to a child on the autism spectrum.

“Traditional events may have a large emotional meaning or weight, but parents have to be ready for a child on the autism spectrum to experience them very differently,” Louden says. “Don’t blame them. It’s not their fault for not enjoying them in the same way you do.”

Make concessions: Christmas may mean a pile of gift wrapped presents and heartwarming smiles on Hallmark movies of the week, but nostalgia can frustrate special-needs families. Kids won’t grasp the emotional weight of the moment, so tailor it to their needs.

“The expectations associated with the holidays are hard for all of us, and they’re especially hard for kids with autism and their families,” Wood says. “For a lot of us, we go through the grief process again over Christmas. These times societally make up the fabric of your memories of your children. Our kids have a very different holiday and for me it’s always a time of a little bit of sadness.”

At Woods’ house, her son gets his Christmas presents unwrapped, to keep him engaged and excited while the rest of the family unwraps gifts. She plays his favorite music during Thanksgiving dinner to give him something to enjoy. Sometimes she and the family make an outing that is not holiday-themed, but is her son’s favorite thing to do, to give him joyful experiences they can appreciate together.
"It's a hard lesson to learn. People will tell you that autism is not your fault, but when your autism makes them unhappy, it seems like your fault," Louden says. "It would be like blaming a person in a wheelchair. ‘We want to play a touch football game! Why won't you participate?' Instead, we hear, 'We want a Christmas where everyone is laughing and having fun. Why do you choose not to be engaged?' "

In the end, the holidays are more about love and family than greeting-card moments. Forgo the pressure, and create a holiday that you and your family can enjoy with less stress.

For more information on Paul Louden, visit www.facebook.com/UnderstandingAutismRadio.

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