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
« Back to Woodlands News
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.
« Back to Woodlands News & Highlights