Re: Growing Old With Autism

May 25, 2009

Thank you for this artical

Growing Old With Autism

By KARL TARO GREENFELD

Published: May 23, 2009

http://www.nytimes.com/2009/05/24/opinion/24greenfeld.html

Autism was already widely being described as an epidemic, affecting as many as

1 in 150 8-year-olds, according to the Centers for Disease Control and

Prevention. We had come a long way since Noah got his diagnosis in the late

'60s, the so-called dark ages of autism, when many pediatricians believed they

had never seen a case, and so-called refrigerator mothers were mistakenly blamed

for their children's withdrawn, antisocial condition.

But now, with autism described to me as " the disease of the decade " by

Bell, the executive vice president of programs and services for the advocacy

group Autism Speaks, I thought perhaps there was hope, even for low-functioning

adult autistics like Noah.

Noah has been my family's focus for decades. As a baby, he had been very slow

to turn over, crawl or walk, and each subsequent developmental milestone was

even more delayed as he grew into adulthood. My parents did everything they

could for him, moving us from New York to Los Angeles in the early 1970s to be

closer to a pioneering autism program at the University of California at Los

Angeles, opening their own day care center for the developmentally disabled,

even creating a one-on-one assisted-living situation for Noah - years before

this became common - so that they could delay institutionalizing him.

I toured those state hospital systems with my parents when we started looking

for a place for a growing-up Noah. Those were terrifying visits: adult patients

wearing helmets and restraints, howling and hitting themselves. This was during

the '70s when the scandals at state psychiatric hospitals like Letchworth

Village in New York and Camarillo in California were making terrifying

headlines. Clients at Camarillo were dying from neglect and improperly

administered medications. We had to keep Noah out of that system for as long as

we could.

Eventually, when he was 22, Noah had to leave home. He graduated from his

special needs school on a bright, sunny Orange County day; he was beaming,

handsome in his bright blue cap and gown.

But for the profoundly autistic, graduation is perhaps the saddest day in

their lives. For those who cannot enter the work force, continue on to more

education or find some sheltered workshop environment with adequate staffing,

there are few options. Far too few programs and resources are allocated for

adults with autism.

Noah has been in and out of sheltered workshops, but these are always under

threat because of state budget deficits. Noah has been asked to leave some

programs because he was too low-functioning. For several years, we have been

trying to find a day program where he might interact with others and perhaps

perform some simple, menial job. We have long since given up any hope that he

might continue in adulthood the behavioral therapies that are now considered

standard for autistics; unless the family is willing to pay the bulk of the

cost, there is very little out there for men and women like Noah.

For purposes of fund-raising and awareness-raising, autism has been portrayed

as a childhood disease. The federal Department of Health and Human Services has

characterized it as a " disorder of childhood. " There are practical reasons for

this: early intervention has been shown to be the most effective therapy. The

trend in autism treatment has been to steadily lower the age at which intensive

intervention commences - as early as five months, according to some experts. Yet

autism is not a degenerative condition; the vast majority of those 1 in 150

children who are afflicted will survive to adulthood.

As I spoke with the experts, I began to see that the focus on children had

influenced not only the marketing of autism, but also research and treatment. It

seemed the majority were interested in children only, the younger the better.

" The best time to look is at the early ages, when autism is developing, "

Sophia Calimaro, vice president of research at Autism Speaks, told me a few

months ago, explaining that was also where there had been the most treatment

success. " I'm not making excuses, but that's really why more research into

adults with autism hasn't been done. "

Low-functioning adult autistics are viewed with sympathy but not much

scientific inquiry. No one has broken down how many dollars are actually flowing

to adult autistics, but at the International Meeting for Autism Research in

Seattle in May 2007, I counted more than 450 papers and presentations and three

dozen talks on autism given by academics and specialists; of those, only two

dealt with low-functioning adults, and neither included a cohort large enough to

be statistically relevant.

The careful measurements of brain function, or dysfunction, were almost all

done on children. A few cognitive and emotional development studies dealt with

adults, but these were overwhelmingly focused on high-functioning autistics and

people with Asperger's syndrome.

Autism Speaks, the major sponsor of autism research projects, has not broken

down the proportion of funds that go to adult-oriented research, but Mr. Bell,

whose teenage son is autistic, laments that " it's low, too low. ... We have to

change the paradigm for those of us who have kids who are going to grow up and

need more and better services. "

That change can't come soon enough. Even with state-of-the-art early

intervention - eight hours a day, seven days a week - many autistics will need

support throughout their lives. The reality is that very few, perhaps only 10

percent, of those as severely autistic as Noah benefit from the current

interventions to the point where they become functioning members of society.

If the current C.D.C. estimation of prevalence is correct, then there will be

an awful lot of adult autistics who need lifetime support and care. Noah's life

has been a grim study in how scarce those resources are. Without them, his

behavior has regressed.

A recent " psychological and psychopharmacological " report by the California

Department of Developmental Services said Noah exhibited a " failure to develop

peer relationships, a lack of social or emotional reciprocity, " and it described

some of his " maladaptive behaviors " like " banging his head against solid

surfaces, pinching himself and grabbing others. "

" Noah may also, " it noted, " intentionally spit at others, pinch or scratch

others, dig his fingernails into others, and/or pull others' hair. He may bite,

head-butt and hit others; throw objects at others, and hit/slap his head when he

is highly agitated. " He is a handful.

Now, imagine a few hundred thousand Noahs.

May 25, 2009

Elyse-yes, thankyou for this very timely article! My son is now an adult and

there is a huge gap in services for those over 21. We need to have Dr.

Goldberg's message heard by the right people who can save an entire generation

from this tragic fate.

Re: Growing Old With Autism

Thank you for this artical

Growing Old With Autism

By KARL TARO GREENFELD

Published: May 23, 2009

http://www.nytimes.com/2009/05/24/opinion/24greenfeld.html

Autism was already widely being described as an epidemic, affecting as many as 1

in 150 8-year-olds, according to the Centers for Disease Control and Prevention.

We had come a long way since Noah got his diagnosis in the late '60s, the

so-called dark ages of autism, when many pediatricians believed they had never

seen a case, and so-called refrigerator mothers were mistakenly blamed for their

children's withdrawn, antisocial condition.

But now, with autism described to me as " the disease of the decade " by

Bell, the executive vice president of programs and services for the advocacy

group Autism Speaks, I thought perhaps there was hope, even for low-functioning

adult autistics like Noah.

Noah has been my family's focus for decades. As a baby, he had been very slow to

turn over, crawl or walk, and each subsequent developmental milestone was even

more delayed as he grew into adulthood. My parents did everything they could for

him, moving us from New York to Los Angeles in the early 1970s to be closer to a

pioneering autism program at the University of California at Los Angeles,

opening their own day care center for the developmentally disabled, even

creating a one-on-one assisted-living situation for Noah - years before this

became common - so that they could delay institutionalizing him.

I toured those state hospital systems with my parents when we started looking

for a place for a growing-up Noah. Those were terrifying visits: adult patients

wearing helmets and restraints, howling and hitting themselves. This was during

the '70s when the scandals at state psychiatric hospitals like Letchworth

Village in New York and Camarillo in California were making terrifying

headlines. Clients at Camarillo were dying from neglect and improperly

administered medications. We had to keep Noah out of that system for as long as

we could.

Eventually, when he was 22, Noah had to leave home. He graduated from his

special needs school on a bright, sunny Orange County day; he was beaming,

handsome in his bright blue cap and gown.

But for the profoundly autistic, graduation is perhaps the saddest day in their

lives. For those who cannot enter the work force, continue on to more education

or find some sheltered workshop environment with adequate staffing, there are

few options. Far too few programs and resources are allocated for adults with

autism.