CNN: Autism 911

[Guest guest]

Autism 911: Help for a family in chaos

By Saether

CNN Medical Producer

Find this article at:

http://www.cnn.com/2008/HEALTH/12/23/autism.911/index.html

CNN follows the Bilsons as they try to regain control of their

autistic teenage daughter and restore some calm into their chaotic

household. The three-part series will appear daily beginning December

24 on CNN's " American Morning, " which airs from 6 to 9 a.m. ET. And

watch for a followup story on CNNhealth.com on December 26.

Seal Beach, California (CNN) -- The Bilson family is like many other

families: three kids, a cat, and a small, lovely home with lots of

family photos and carved wooden wall signs with sayings like " Live,

Laugh, Love. "

But step inside their house after 4 p.m. most weekdays and you'll

want to cover your ears because of the noise -- the screaming, to be

exact. These are not the shouts of sibling rivalry or parental

annoyance. This is the high-pitched, ear-shattering sound of a 13-

year-old girl. More accurately, it is the sound of a frustrated,

irritated, very loud teenager with autism.

Marissa, the middle Bilson child, was diagnosed with autism when she

was a toddler. Her mother, , a nurse, knew something wasn't right

early on, when young Marissa's tantrums were off the charts and

seemingly unwarranted.

But during the first few years, doctors told Bilson that her

daughter was fine and this behavior would eventually pass. They were

wrong on both counts.

Marissa's behavior has not passed; it has, in fact, become worse.

According to Bilson, Marissa and her tantrums rule the household. " I

don't want to hear her screaming and tantruming, so we pretty much

let her do what she wants, " Bilson says. " We " means , her

husband, , and their two other children, Brittany, 15, and 6-year-

old n.

Keeping the peace means that, when it comes to Marissa, the rules are

different. She is allowed unlimited time on the one family computer.

She is allowed access to her siblings' rooms and possessions. She is

allowed to eat dinner at the computer instead of the family table.

But before you sit in judgment of the Bilsons, and suggest they just

need a firm hand to keep their middle child in line, consider one

thing: They are trying to cope with a child with severely impaired

social sensibilities.

" Do you think people who don't have children with autism know how

tough it is to deal with them? " CNN's senior medical correspondent,

Cohen, asked Marissa's mom in a recent interview.

" No, " Bilson replied. " And I don't see how they could. "

She's right -- we can't, because many of us have never seen autism in

action. Learn more about autism »

Autism is described on the National Institutes of Health Web site as

a " developmental disorder that appears in the first three years of

life, and affects the brain's normal development of social and

communication skills. " According to the Centers for Disease Control

and Prevention, autism and related disorders affect about one out of

every 150 babies born each year.

Autism manifests itself in many different ways. Although there are

some common threads, like language issues, repetitive movements and

difficulties connecting to others, specific behavioral patterns are

largely unique to the individual. " Children with autism are all

different; they are like snowflakes, " explains Dr. Leaf, co-

director of the group Autism Partnership.

The one thing that Leaf believes they all have in common is

that " they are not expected to do enough. " Leaf insists we have set

the bar too low for what we think children and adults with autism can

do. " They are highly teachable, " he says. " You just have to have a

good teacher. "

A good teacher is exactly what Bilson was looking for to help her

with Marissa. She knew that her daughter's behavior needed to be

reined in, and it needed to be done now.

" She is getting older. She's 13 and her tantrums are louder and

longer than they used to be. It's just so inappropriate. It was OK

when she was much younger, but now that she's going to be an adult

soon, she can't be behaving this way, " Bilson says with tired

resignation.

But what could the Bilsons do? This family doesn't have a lot of

extra money, and most programs either aren't covered by insurance or

have long waiting lists. The costs are staggering, according to the

Web site FightingAutism.org. Families with autistic children can

expect to spend $30,000 annually to provide proper medical,

educational and other assistance necessary for dealing with an

autistic child.

Enter Autism Partnership, or AP. This group, founded in 1994, offers

extensive therapeutic services to children and adults with the

disorder. One of its most unique programs is an intensive one-on-one,

at-home intervention service that is similar in scope to what happens

on the television show " Nanny 911. " It's not cheap -- about $2,500

per day, typically for a five-day period (with additional days on

an " as needed " basis).

Most of AP's work is grounded in a behavior modification technique

known as Applied Behavioral Analysis or ABA. Essentially, the method

breaks down behavior patterns, rewarding proper behavior while being

careful not to encourage improper responses.

And that is exactly how AP therapist Rick Schroeder hopes to reshape

Marissa Bilson's worst behavior. The group, which met Marissa while

working in her school, offered the Bilson family a free week-long

intervention with the proviso that CNN be allowed to record the

process.

The week started off with a day of observation -- a day with lots and

lots of screaming and tantrums, that left Schroeder stunned. He had

observed Marissa at school where, he says, she was much less

demonstrative.

But Schroeder is still eager and ready to tackle the challenge.

" I think the family is starting to realize something needs to change,

and that's very good, " he says after his day of observation. " As far

as Marissa's behavior goes -- and the level that she is capable of

going to -- she's pretty much out of control, for sure. "

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