Elizabeth
Cohen, CNN
When her son Justin was a newborn, Shannon Kinninger looked up
from the kitchen where she was watching dishes, and saw a large,
heavy toy fall on Justin's his head. Justin didn't cry.
Kinninger thought that was odd, and it wasn't the only thing
that seemed strange about Justin. At her weekly playgroup, she
watched the other babies hit their developmental milestones more
or less on schedule. Justin lagged far behind.
"When he was supposed to be sitting up, he wasn't sitting up.
When he was supposed to be holding his head up, he wasn't
holding his head up. When he was supposed to be rolling over, he
wasn't rolling over," says Kinninger, a nurse who lives in
Fayetteville, Georgia.
Kinninger brought up her concerns to her pediatrician, but he
told her not to worry. "The doctor kept saying that boys develop
more slowly than girls," she says. "He kept reassuring me he'd
be OK."
Even though she felt frustrated, Kinninger accepted this
explanation for years. Finally, when Justin was 4, she decided
enough was enough. Justin wasn't potty trained, and he had
unusual repetitive behaviors, such as switching lights on and
off for extended periods of time, or washing his hands over and
over. Plus, he wouldn't look at people -- he looked "through"
them.
She switched doctors, and the new pediatrician referred her to a
developmental pediatrician. "He said, 'He's autistic. I knew
five minutes after you came in,' " Kinninger says. "I thought,
finally, we get a diagnosis."
Now Kinninger thinks about all those lost years -- from babyhood
to 4 years old -- critical years when Justin could have been
receiving therapy for children with autism, but didn't. She now
tells other parents of children with autism they need to be
advocates for their children, from the very first moment they
show signs of having autism.
Here, from mothers of children with autism, are ways parents
should fight for their children with autism, from babyhood
through the school years.
1. Trouble getting a diagnosis? Bring in video, letters.
If you're concerned your child has autism, and you're getting
the same response Kinninger got from her pediatrician, remember
doctor's visits are often short, and your child may not be
displaying the worrisome behavior you've seen so often at home.
Alison Singer, executive vice president of Autism Speaks, an
awareness and advocacy organization, suggests videotaping your
child's behavior and showing it to the doctor. "You could play
it on your laptop, or even just bring in the video camera," she
says.
Getting a letter of support from your child's day-care provider
or preschool teacher might also help.
"Teachers are seen as other professionals, and a letter saying,
'In 20 years of teaching, this behavior is really unusual,' can
go far," says Singer, who has a 10-year-old daughter with
autism. If your child isn't in day care or school, even a letter
from a neighbor who knows your child could help, she says.
Singer emphasizes that parents shouldn't push their pediatrician
for a diagnosis. "We're saying, refer the child to a
developmental pediatrician for additional screening and testing.
Because when a parent thinks something is wrong with their
child, they're usually right," she says.
Educating yourself about autism will also help you have a
discussion with your pediatrician. Autism Speaks, First Signs,
and the American Academy of Pediatrics all give excellent
overviews. Autism Speaks' Video Glossary has more than 100 video
clips comparing the behavior of children with autism spectrum
disorders with the behavior of a typical child.
2. Sign up for early intervention
Any child younger than age 3 with a developmental delay is
eligible to receive services through Early Intervention, a
government-mandated program that provides services to eligible
children. Services are
free of charge, and vary from state to state, but may include
speech and language instruction and occupational and physical
therapy.
To learn how to apply for Early Intervention, click on this
state-by-state directory from the National Dissemination Center
for Children with Disabilities and scroll down.
Early Intervention is invaluable because it links parents to
services in the community, but Lisa Goring, mother of a child
with autism and director of family services at Autism Speaks,
warns that parents may also have to search on their own, since
it can be hard to find services without a long waiting list.
"There just aren't enough service providers for the kids who
need them," Goring says. To find services on your own,
www.wrightslaw.com,
which offers information about special education law and
advocacy, has a Yellow Pages for Kids that lists providers.
Long waits are so prevalent that Nancy Wiseman, founder and
president of the advocacy group First Signs, whose 12-year-old
daughter has autism, has a few suggestions for how to get in
quicker. First, parents should stress the age of their child
(many clinics will give priority to children under 3), and
should ask the pediatrician to make a call to the specialist.
More suggestions are in her book "Could it be Autism? A Parent's
Guide to the First Signs and Next Steps."
3. Know your child's rights in school
When your child enters public school, he or she has rights under
federal and state laws. The U.S. Department of Education has
information about federal laws and state laws. The National
Association of Parents with Children in Special Education has
information about children's legal rights as well.
Wiseman says that even with these protections, you'll still have
to work to get what's best for your child.
For example, Wiseman moved to get into a different school
district, and then a few years later, when that district no
longer worked well for her daughter, she twice fought to place
her child out of the district.
"It's very frustrating to battle a school, and you really have
to do your homework," she says.
You and the district will come up with an Individual Education
Plan. Wiseman recommends "The Complete IEP Guide: How to
Advocate for Your Special Ed Child" by attorney Lawrence Siegel.
Also, school districts often have a Special Education Parent
Teacher Association. Parents there can often give good advice on
how to work with the school district.
4. Sign up for a research study
If you live near a major research university, Wiseman suggests
finding out whether anyone is looking for children with autism
for research studies. Sometimes, these universities will provide
care for your child as part of the study. Wiseman's group, First
Signs, has a list, as does Autism Speaks.
5. Get support from other parents
Judith Steuber, who raised two grandsons with autism, said that
if she had to do it all over again, she would do one thing very
differently. "From the beginning, I wish I'd had more support
from other parents," says Steuber, who now acts as a mentor for
special-needs parents in her school district. "I think that
makes a big difference."
Autism Speaks has a state-by-state list of support groups. You
can find a chapter of The Autism Society of America here.
There are electronic support groups on Yahoo, the Berkeley
Parents Network, and Autism Web. The Arc has support groups for
people with intellectual and developmental disabilities; Wiseman
says many have a large number of parents of children with
autism.
Elizabeth Cohen is a correspondent with CNN Medical News. Senior
producer Jennifer Pifer and intern Jennifer Kabak contributed to
this report.
Find this article at:
http://www.cnn.com/2008/HEALTH/conditions/03/25/ep.autism.advocacy/index.html
back to the top ~
back to Breaking News
~ back to
What's New
|