You're on your own.

[Guest guest]

http://www.record-journal.com/articles/2005/04/24/news/news01.txt

If you're a child with one of the autism spectrum disorders, there

are support services available to help you in all 50 states. But

there are three states where those services dry up as soon as you

become an adult, and after that...

You're on your own.

Where? Well, in Alabama. And in Mississippi. And, believe it or not,

in Connecticut.

ByJeffery Kurz, Record-Journal staff

At his birthday party when he turned two years old, Vaughn

was playing when the other kids stopped to sing " Happy Birthday " to

him.

As the singing began, covered his ears and started to scream.

" The noise hurt his ears, " recalls his mother, jean Vaughn. " It

was physically painful. "

That was the first indication for jean and her husband, Bob,

who live in Wallingford, that there was something different about

their son. By the time he reached 5, had been diagnosed with

atypical pervasive developmental disorder, a general category of

neurobiological disorders also known as autism spectrum disorder.

The disorder affects language and social functioning.

People with such disorders perceive the world differently. They may

not be able to read facial expressions, tell whether someone is sad

or angry by looking at them, for example. And, like , they

can be highly intelligent, although most people won't be able to see

it. , said his mother, " presents himself in a way that makes

people think he's not as able as he is. "

is now 20. He goes to a transitional educational program run

by the Area ative Educational Services at Whitney High School

East in Hamden. will turn 21 in January and will finish out

the school year, the equivalent of his senior year. He'll take his

SATs.

But once he finishes school, will have exhausted the support

services — namely, the school system — available to him. Connecticut

is one of three states in the country, along with Alabama and

Mississippi, that lack support for people with developmental

disabilities who do not have mental retardation.

" It's an outrage, " said Lois Rosenwald, co-director of the

Connecticut Autism Spectrum Resource Center. A Wallingford resident,

Rosenwald has an adult son with Asperger's syndrome, one of the more

common of the autism spectrum disorders.

" There's nothing, " said Rosenwald. " No agency for them, or any

social services, or any respite. "

Rosenwald has worked for years to persuade state lawmakers to set up

appropriate services.

" We are just so far behind, " she said. " These people have just been

so locked out of the system. "

The need for services is particularly important when people, like

, are making the transition to adulthood, said Jeanne

Millstein, child advocate for the state of Connecticut.

That the state lacks any services is " unconscionable, " Millstein

said.

" In my office you see the tragic ending for many families, " she

said. " Many feel they have no option other than institutionalizing

their child. "

Millstein said some children with developmental problems, as many as

500, are sent out of state. " We're bringing our prisoners home, but

we aren't bringing our children home, " she said.

There are now two bills making their way through this legislative

session that aim to help those with developmental disabilities who

do not have mental retardation. One calls for a Medicaid waiver that

would increase funds for home and community service.

The other calls for a pilot program to help 150 people with

developmental disabilities who are not covered by services from the

Department of Mental Retardation. The program would set up an

infrastructure and train providers, Millstein said.

Such a program would not come cheaply, at about " a couple of million

dollars, " she estimated. And those who support creating such

programs recognize that the timing, from a fiscal point of view, is

not good.

Neither bill was taken up by the General Assembly's Appropriations

Committee Thursday, which means chances are extremely slim for

passage.

" It's a difficult budget year, but we're trying to shed some light

on the problem, " said state Sen. , D-Cheshire, who

introduced the pilot program legislation.

said lawmakers were having trouble finding the funding to

maintain services for programs for the mentally retarded, much less

coming up with funds for a new population.

" But that's been our answer for people with developmental

disabilities for far too long, " he said. " We're going to have to

find the money sooner or later. "

" I think a lot of policy makers and legislators weren't aware of

just how dire the situation was, " said Millstein.

" Awareness is the first step, " she said. " I think we're making a lot

of headway. It is going to cost some money, but I hope policy makers

will see the benefit of keeping families together. "

A prepared message sent by email from the office of Gov. M. Jodi

Rell said the governor " is very interested in finding new ways to

assist developmentally disabled individuals and their families. The

Governor is aware that autism is growing in numbers and would like

to see more done to assist autistic individuals. "

" A private affair "

Chances are, services of any kind would have gone a long way in

helping the Vaughn family. ' younger brothers, and

, also have autism spectrum disorder. To spend an afternoon in

the Vaughns' Road home is to understand how such disorders

affect individuals differently.

Autism, which people usually think of, is one of the autism spectrum

disorders, along with Asperger's syndrome and the more rare Rett's

syndrome. Spectrum disorder means characteristics and symptoms can

vary greatly.

Causes of autism are not known, though it is attributed to abnormal

brain structure and function. Cases of autism, the most common of

the pervasive developmental disorders, are on the rise, affecting

one in every 250 births (some estimates put it at one in every 161

births). About as many as 1.5 million Americans have some form of

autism.

Autism is not connected to ethnic, social or economic background,

but affects four times as many boys as girls.

Since an early age, Vaughn has participated in studies at

the Yale Developmental Disabilities Clinic in an effort to help

researchers better understand the disorder. His brothers participate

as well. Recent exercises for included Greebles, alien

creatures that was asked to name, recognize and identify.

Difficulty with communication skills is a trait of autism. " They've

learned a lot about the disorder from , " jean Vaughn

said.

" We don't know for sure what causes autism, " said Ami Klin, co-

director of the Yale clinic. What is known, he said, is that autism

has something to do with brain function and that it happens early in

life. " We know there's a strong genetic component, " he said.

Cases like the Vaughns', in which several family members have

autism, are not unusual, Klin said.

" People have a very stereotypical view of what autism is, " he

said, " but these are individuals who vary in their abilities. "

Thirty percent to 40 percent of those with autism do not have mental

retardation, Klin said. In Connecticut, " while they are in school

they may receive services, but the moment they become adults, once

they are out of school, they receive absolutely no entitlements, " he

said.

" The result is that autism becomes a private affair in the family, "

Klin said.

" On a weekly basis we receive calls from aging parents who have no

idea what to do with their children. "

Accepting differences

Though each of the Vaughn boys has an average or above-average

intelligence quotient, the disorder has slowed their progress

through the educational system.

At 16, is a freshman at Lyman Hall High School, concentrating

in agriculture and wildlife biology. He gets As and Bs. He's a

devoted fan of anime, a Japanese animation genre. He creates and

illustrates his own characters and writes his own stories involving

them. " I've been improving on my story skills, " he says.

In the fifth grade at Highland School, 12-year-old also gets

As and Bs. He loves science fiction and " Star Wars. " Ask him what

he'd like to be when he grows up and he says, " rich. "

None of the boys has friends or cares much about them, and neither

are they much interested in the socializing issues that occupy the

lives of many children.

likes science fiction, Arthur C. e and Isaac Azimov,

and science. He won particular praise for a school assignment that

asked him to pretend he was a scientist on Mars and to imagine the

type of structure a Martian cell would need to survive.

His recent reading list includes " Einstein's Cosmos, " " God's

Equation, " " Cosmic Company, " " Carl Sagan, A Life, " " Natural Born

Cyborgs " and " The Extravagant Universe. "

" I think he can do more than sweep a floor, " said his mother.

' progress through the Wallingford school system was

difficult " because there was a dearth of understanding at that

time, " said jean Vaughn. " Then we were looking for a more

appropriate placement, smaller classrooms and one-on-one support. "

" He kind of fell through the cracks until my husband and I became

more aware and became advocates for him, " she said.

The pressures involved in bringing up three children with such

specialized needs are easy to underestimate. " It's really no fun

being a pioneer, " said Vaughn. But without a support system, she

said, there's been no choice. Which is why she is more than willing

to advocate for the proposed legislation.

She would like to see her children more integrated into the

community, she said. " I want them to be dignified, because they have

a lot to contribute, as far as their ability. "

It's a sentiment echoed by Klin, the Yale researcher. " The kind of

support they need is not desperately expensive, " he said. " If there

is an area where we would get a return for our buck, this is it. "

" They're egalitarian, " said jean Vaughn. " They don't judge

people, they don't manipulate, they're inherently decent people. "

jean Vaughn said she's also found it important to find an

outlet, recognizing that she can't always be the person who talks

about autism, all the time. She's found some release in karaoke, and

can perform a spirited rendition of " New York, New York, " among

other popular tunes.

But the focus for her and her husband, who owns a car stereo store

in Hamden, will remain on the boys.

" They can be contributing members of society, " she said. " Yes, we

have to teach them to be more sociably able, but we also have to

teach society that differences can be OK, and wonderful. "

jkurz@...