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Eight years after Diane Pope’s son was diagnosed with Asperger’s syndrome, he is preparing to graduate from Columbus State University and hopes to work for the federal government. But the road to this point hasn’t been easy.
“Getting a diagnosis of autism is devastating,” says Pope, president of the Muscogee County Autism Support Group (MCASG). “And it’s the little things — when friends of your children are going to the park, you feel it again, because you know your child’s probably not going to do that. There are lots of times over the years when that devastation will hit you time and time again.”
In addition to a parent’s relationship with an autistic child, there are many other issues pertaining to marriage and sibling relationships that must be dealt with. How parents prioritize those issues and allot their time and energy to them will determine the stability, not just of their autistic child’s life, but of the entire family unit.
In Search of Friendly Faces
Depending on how much therapy and
treatment a parent can afford — autism
still isn’t a billable condition as far as
health insurance companies are concerned — an autistic child may spend
several hours per week in therapy, be
it psychological, speech, physical or
occupational. But in many ways it’s just
as important simply to expose them
to social settings, which can be the
biggest and most emotionally wrenching
obstacle for a child with autism.
Even as a highly literate child on the “high-functioning” end of the autism spectrum, Diane Pope’s son displayed a number of social-skills deficits that could have hampered his childhood development. Pope was able to steer him to a social-skills group led by a trained behavior analyst, but it was also important to make play dates outside the group, she says, to acclimate him to the real world of social interaction.
“For some of these kids it’s very challenging, getting through a day at school with the stimulation and noise around them,” she said. “Especially as they get older, they tend to want to withdraw — sometimes just getting through the day at school is so taxing for them that they don’t want to do anything else.”
For MCASG founder Lisa Jenkins, whose youngest child, George, is autistic, it was important to make sure George had those kinds of healthy interactions with his two older brothers. “Every day everybody has time with George — they play with George or they read a book or something like that,” she said. “He can be violent — he can head-bang or bite or throw things — so they’ve even learned how to protect him. Every family’s going to have a different situation.”
Time, the Most Precious Commodity
Jenkins also realized, though, that the
extra attention she gave to George could
not come at the expense of his siblings. “I
have to allot ‘mommy time’ to them
when George is not around and it’s their
time,” she said. “You have to give each
child individualized time. Even if it’s just
taking the child with you to the store,
give them that time. All they want to do
is spend time with you. Do not let the
other children suffer.”
At minimum, she said, each child should get 15 minutes of one-on-one time with each parent in the course of a day. “I may take George and do a puzzle with him when we get home from school; my husband may be doing spelling with one of our other children. That’s his time,” Jenkins explained. “Then everybody comes in end eats dinner, and after that maybe I’ll take Ed and work with him in a project he has. For at least 15 minutes a day, each one of us parents takes all the children individually and sits with them talking about their needs.”
In some places there are support and discussion groups available for siblings of children with autism, and it can be just as important for these siblings to have social interactions with other kids who know what they’re going through. “It’s good for them to get out there with each other and talk about the issues of having a sibling, because often they don’t feel like they’re getting the attention they want,” Pope said. “And sometimes they feel like the only way they’re going to get that attention is negative behavior, because sometimes that’s what they’re seeing a lot of in their sibling with autism.”
Marriage: Defying the Odds
One of the most difficult tasks of raising
a child with autism involves not
the child but the parents. Although the
exact numbers are a source of debate
within the medical and psychological
community, parents of autistic children
are at a higher risk for divorce than the
rest of the population, and Jenkins says
the number-one reason is the stress of
dealing with the greater financial responsibilities
of raising a child with autism.
“Finances are straining on families,” she said. “Some families are mortgaging their houses to provide therapy, and it’s sad. So you really have to find the balance — first of all, how much money you have, what you’re going to do, what your top priorities are, and work from there.”
Beyond that, though, husbands and wives need to keep the lines of communication open throughout their child’s formative years — even if it means scheduling time with each other the same way they’d allot time for their kids. “My husband and I have our time to talk in the evening once everybody’s in bed, or 6 o’clock in the morning before the kids wake up, even if it’s just to talk over coffee on the porch,” Jenkins said.
One important resource that many parents don’t consider, she adds, is the church. “In my opinion, it’s one of the strongest bonds you can have,” she says. “That has made a huge difference for us, because all the stress we’re feeling, we remember God’s with us even though we don’t always think about it.”
Help is Out There
Above all, parents need to remember
that every autistic child is different;
there’s no “one size fits all” remedy for
their child’s problems. And they can’t
let their parenting philosophy be dictated
by people who don’t understand the
disorder. “One of the problems, when
you have a child with autism, is that
people think you’re just spoiling them, to
go along with that,” Pope said. “It
might look that way on the outside, but
when you have to live with it on a day-to-day
basis, maybe that one concession
means you don’t have a meltdown that’s
going to suck the life out of the whole
day. Then that’s what you do.”
MCASG began in 2005 with six families; over the past five years, Jenkins says they’ve worked with more than 400. The Centers for Disease Control estimate that one in 98 Georgia children are autistic, including one in every 60 boys. That means that as many as 2,000 children in the Columbus metropolitan area either have been diagnosed as autistic or are awaiting diagnosis, Jenkins says — a number that could increase as the Base Realignment and Closure process brings more soldiers and their families to Fort Benning.
Finding help and guidance for these families has become a top priority for MCASG. They have been a driving force behind the Autism Hope Center, which both provides support for families and trains aspiring nurses and dental technicians to deal with autistic children. They have also been a centralized source of information for families seeking specific services — everything from speech therapy to mentoring opportunities where younger autistic children can spend time with autistic high-school and college students to prepare for what lies ahead.
“I know of 10 families within four blocks of me who have autistic children—4 years of age to 30 years of age. That’s a lot of kids in four blocks,” Jenkins said. “You may not have a child with autism, but you might be a grandparent, an aunt, an uncle.We have to educate these families and we have to educate the community, because autism’s not going anywhere.”
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