autism growth stats

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Parents Confront A Disabling Disorder That's Increased 17-Fold

By Kathie Durbin, Columbian

http://www.columbian.com/

Catastrophe isn't too strong a word.

In County, in Washington and across the nation, a mysterious,

disabling, lifelong neurological disorder with no known cause and no known

cure is approaching epidemic proportions among young children.

It's autism.

And schools, social service institutions and society as a whole are

unprepared to deal with it.

Children with autism can't communicate normally or relate to other

people. Most will need help to accomplish the most basic tasks in life. The

cost in lost human potential will be immeasurable. All of us will pay the

cost in dollars.

At Vancouver's McLoughlin Middle School, Jake Rehm knows five students

besides himself with Asperger's syndrome, a high-functioning form of autism,

in the sixth grade alone.

The official tally of children with autism in the Vancouver School

District quadrupled from 16 to 63 between 1997 and 2001. Evergreen's numbers

doubled from 32 to 63 between 1998 and this past January. The Camas School

District had 11 children with autism 14 months ago; now it has 30.

County's numbers increased from four to 135 between 1994 and

2000 and continue to climb. During that same period, the number of children

diagnosed as autistic in Washington increased 17-fold, from 99 to 1,685.

In Oregon public schools, the 2,650 children with autism served last

year outnumbered the 1,229 children who were blind, deaf, or visually or

hearing impaired by more than two to one.

Nationwide, as many as 550,000 Americans are believed to have some

form of autism. Only a few years ago, the disorder was believed to afflict

one in 5,000. Now health officials estimate one in 500 people have symptoms

that fall within the " autism spectrum. "

No one knows why this is happening. Most experts say better diagnosis

is part of the answer. It's clear that a predisposition to autism is

inherited, but that doesn't explain the recent spike.

Some parents of children who began showing symptoms of autism after

they received immunizations for childhood diseases believe the mercury

preservative in the vaccines helped cause their children's autism. In nine

states, including Washington and Oregon, parents have filed class action

lawsuits against drug companies that manufactured the mercury-laced vaccines

in the 1990s.

Other parents believe the vaccines may have led to biochemical changes

that contributed to their children's autism. No conclusive research supports

these theories.

What is clear is that schools, social service agencies and communities

are unequipped to deal with the surge of children who are autistic and with

their complicated and expensive needs. Most parents find that in trying to

get appropriate programs for their children, they are on their own.

That has resulted in striking inequities ---- among states, among

school districts, even within communities and individual schools.

Most teachers get no special training in how to deal with the

educational needs or behavior problems of autistic children. Until three

years ago, Washington had no statewide program to assist local school

districts in working with these children.

Underfunded social service agencies struggle to provide services to

children with autism and other developmental disabilities. Washington pays

about 1,800 families an annual allowance of $1,300 for respite care and

other services, but 6,000 more families are on a waiting list for funding.

Oregon also has a waiting list, though developmentally disabled children in

Oregon receive far more.

In 1999, the Arc of Washington, an advocacy group for the disabled,

sued the state of Washington in federal court, demanding that children with

developmental disabilities not be required to wait years for Medicaid-funded

services. A settlement has been reached, but the legislature has yet to

figure out how to pay the state's share of the cost ---- an estimated $14

million in 2003 and $24 million annually after that.

Once people with autism reach the age of 21, the need for services

becomes acute.

Aging parents often cannot care for their adult children. Residential

institutions are emptying, and community-based group homes are scarce. The

Autism Society of America has called the absence of residential options and

services for autistic adults a national crisis.

" The most critical issue is woefully inadequate funding, " the

association said in issuing a call to action last July. " We cannot allow

another generation of our adult children to go without the vital services

that any humane society knows is necessary for a life of dignity and worth. "

Thirteen families in and Skamania counties who faced that

prospect for their own autistic children went to the legislature and won a

pilot program that helps them make the transition from school to adult life.

But it is unlikely to be extended to all who could benefit.

In County and across the nation, parents of children with autism

are taking matters into their own hands. They are networking, doing research

on the Internet, lobbying lawmakers, filing lawsuits and educating

themselves about effective therapies in an effort to give their children the

best chance possible.

Some families are involved in tense negotiations with their school

districts over what constitutes the " free, appropriate public education "

their children are guaranteed under federal law. Some worked with

Educational Service District 112 to form a cadre of parents and educators

that is teaching teachers what they need to know.

With the increased prevalence of autism has come an increase in

funding for research into its causes and a flowering of new therapies that

may help people with autism live more meaningful lives. But most of the

answers are still years away.

In the meantime, these children, and the families who love them,

struggle to find their place in the world.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.