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From: Lydia Glider-Shelley <mizlydia@...>
Subject: Fwd: Rise in autistic adults worries caregivers
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Rise in autistic adults worries caregivers
http://www.sacbee.com/ourregion/story/1983338.html
By Cynthia Hubert
chubert@...
Published: Sunday, Jun. 28, 2009 - 12:00 am | Page 1A
As a chubby, smiling baby boy, Marlon
Barton<http://topics.sacbee.com/Marlon+Barton/>delighted everyone
around him. Now that he is a strapping young man who
flaps his hands and makes odd noises, no one knows quite what to do with
him.
Barton is 26 years old, 6 feet 2, 283 pounds and acutely autistic. He was
diagnosed when the condition was considered unusual and when doctors offered
little hope to parents of the children who suffered from it.
His mother, Pearlie Barton, <http://topics.sacbee.com/Pearlie+Barton/> cares
for her son around-the-clock now in their south Sacramento home. "He scares
people, even though he usually is not aggressive," she said.
"Being large, African American and autistic does not work in his favor,"
either socially or in programs designed to help people with disabilities,
she said.
Autism, a neurodevelopmental disorder that affects language and social
skills, was relatively rare when Barton was born. Since then, for reasons
that are unclear, diagnoses have skyrocketed and the condition is surfacing
in an estimated 1 in 150 children.
As a tidal wave of these youngsters moves toward adulthood with complex
behavioral and medical problems, society is largely unprepared.
"We don't have the programs. We don't have the research," said Dr. Robert
Hendren, <http://topics.sacbee.com/Robert+Hendren/> director of the UC Davis
M.I.N.D. Institute.
<http://topics.sacbee.com/UC+Davis+M.I.N.D.+Institute/>"We have this
very large adult population of autistics coming along, and we
don't know how to deal with them. We just haven't come to terms with it."
But the futures of hundreds of thousands of autistic people in America
cannot be ignored for long, said Hendren and others.
In California, <http://topics.sacbee.com/California/> regional centers will
be serving more than 50,000 autistic people of all ages by the end of this
year, according to the state Department of Developmental
Services.<http://topics.sacbee.com/state+Department+of+Developmental+Services/>If
the trend continues, that number will grow to 70,000 by June 2012.
By 2013, according to the department, more than 4,000 teenagers with autism
will reach adulthood, and by 2018 the agency will be serving more than
19,000 adults with the condition. Nationally, the number of autistic
children expected to need extensive adult services by 2023 is about 380,000
people, and the bill for caring for them will be in the billions of dollars.
Care providers are just beginning to grapple with how to deal with the
surge, even as governments slash social services to cope with budget
deficits. <http://topics.sacbee.com/budget+deficits/>
"The financial impact will be huge," said Hendren. "Many, many people will
be living impaired lives, and where are they going to go? Who will take care
of them? The challenge will fall largely to family members. As those parents
age, they are asking, 'Who is going to take care of my autistic child after
I am gone?' "
It is a question that haunts Pearlie
Barton,<http://topics.sacbee.com/Pearlie+Barton/>58, and her friend
Helen
Richard, <http://topics.sacbee.com/Helen+Richard/> 78, who also has an adult
autistic son.
"Right now, every time I leave Marlon out of my sight I'm taking a chance,"
said Barton, recalling how once, when she looked away for a moment, her son
wandered into a women's restroom. "I have to watch him every minute. But I'm
not going to be around forever."
Research focuses on children
Some people with autism, including Ray
Richard,<http://topics.sacbee.com/Ray+Richard/>can speak and care for
themselves with limited supervision. Some are able to
work, if employers are willing to adapt to their limited social skills.
Others, like Marlon Barton, <http://topics.sacbee.com/Marlon+Barton/> are
entirely dependent on caretakers and family members. Day programs, job
opportunities <http://topics.sacbee.com/job+opportunities/> and housing
options geared specifically toward adults with autism are limited.
"There's really nothing out there to meet the needs of these guys, even guys
who are as highly functional as Ray," Richard said. Her son is 43 years old
and has Asperger's syndrome, a milder form of autism.
"Ray can type 40 words per minute," Richard said. "He has a great
vocabulary. He has a photographic memory, but I can't get him a job because
you can't really teach socialization. It's terrible."
Life for her son might have been better, she said, had he had access to
training programs when he was younger.
Hundreds of millions of dollars a year are now devoted to research around
autism. But the vast majority of studies and treatment are focused on
children, whose brains are still developing and who, with early
intervention, have a good chance to develop speech, social, and vocational
skills.
--0016e6475d18e7658f046da6b021
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<div class=3D"gmail_quote"><div style=3D"background-color: rgb(255, 255, 25=
5);"><div style=3D"width: 655px;"><div style=3D"margin: 0pt; padding: 0pt 2=
5px 0pt 0pt; width: 470px; float: left;"><div><div><span style=3D"color: bl=
ack;"></span> <br>
<h1>Rise in autistic adults worries caregivers</h1>
<p><a title=3D"ShareThis via email, AIM, social bookmarking and networking =
sites, etc."></a>=A0<a href=3D"http://www.sacbee.com/ourregion/story/198333=
8.html" target=3D"_blank">http://www.sacbee.com/ourregion/story/1983338.htm=
l</a>
</p>
<p>=A0</p>
<p>By Cynthia Hubert <br>
<a href=3D"mailto:chubert@..." target=3D"_blank">chubert@...<=
/a> </p>
<p>Published: Sunday, Jun. 28, 2009 - 12:00 am | Page 1A </p>
<p>As a chubby, smiling baby boy, <a href=3D"http://topics.sacbee.com/Marlo=
n+Barton/" target=3D"_blank"><span style=3D"font-size: 11.5pt; font-family:=
"Georgia","serif";">Marlon Barton</span></a> delighted=
everyone
around him. Now that he is a strapping young man who flaps his hands and ma=
kes
odd noises, no one knows quite what to do with him.</p>
<p>Barton is 26 years old, 6 feet 2, 283 pounds and acutely autistic. He wa=
s
diagnosed when the condition was considered unusual and when doctors offere=
d
little hope to parents of the children who suffered from it.</p>
<p>His mother, <a href=3D"http://topics.sacbee.com/Pearlie+Barton/" target=
=3D"_blank"><span style=3D"font-size: 11.5pt; font-family: "Georgia&qu=
ot;,"serif";">Pearlie Barton,</span></a>
cares for her son around-the-clock now in their south Sacramento home. &quo=
t;He
scares people, even though he usually is not aggressive," she said. </=
p>
<p>"Being large, African American and autistic does not work in his
favor," either socially or in programs designed to help people with
disabilities, she said.</p>
<p>Autism, a neurodevelopmental disorder that affects language and social
skills, was relatively rare when Barton was born. Since then, for reasons t=
hat
are unclear, diagnoses have skyrocketed and the condition is surfacing in a=
n
estimated 1 in 150 children.</p>
<p>As a tidal wave of these youngsters moves toward adulthood with complex
behavioral and medical problems, society is largely unprepared.</p>
<p>"We don't have the programs. We don't have the research,&qu=
ot; said Dr.
<a href=3D"http://topics.sacbee.com/Robert+Hendren/" target=3D"_blank"><spa=
n style=3D"font-size: 11.5pt; font-family: "Georgia","serif&=
quot;;">Robert Hendren,</span></a> director of the <a href=3D"http://topics=
.sacbee.com/UC+Davis+M.I.N.D.+Institute/" target=3D"_blank"><span style=3D"=
font-size: 11.5pt; font-family: "Georgia","serif";">UC =
Davis M.I.N.D.
Institute.</span></a> "We have this very large adult population of
autistics coming along, and we don't know how to deal with them. We jus=
t
haven't come to terms with it."</p>
<p>But the futures of hundreds of thousands of autistic people in America
cannot be ignored for long, said Hendren and others.</p>
<p>In <a href=3D"http://topics.sacbee.com/California/" target=3D"_blank"><s=
pan style=3D"font-size: 11.5pt; font-family: "Georgia","seri=
f";">California,</span></a> regional centers
will be serving more than 50,000 autistic people of all ages by the end of =
this
year, according to the <a href=3D"http://topics.sacbee.com/state+Department=
+of+Developmental+Services/" target=3D"_blank"><span style=3D"font-size: 11=
.5pt; font-family: "Georgia","serif";">state Department=
of
Developmental Services.</span></a> If the trend continues, that number will
grow to 70,000 by June 2012.</p>
<p>By 2013, according to the department, more than 4,000 teenagers with aut=
ism
will reach adulthood, and by 2018 the agency will be serving more than 19,0=
00
adults with the condition. Nationally, the number of autistic children expe=
cted
to need extensive adult services by 2023 is about 380,000 people, and the b=
ill
for caring for them will be in the billions of dollars.</p>
<p>Care providers are just beginning to grapple with how to deal with the
surge, even as governments slash social services to cope with <a href=3D"ht=
tp://topics.sacbee.com/budget+deficits/" target=3D"_blank"><span style=3D"f=
ont-size: 11.5pt; font-family: "Georgia","serif";">budg=
et deficits.</span></a></p>
<p>"The financial impact will be huge," said Hendren. "Many,
many people will be living impaired lives, and where are they going to go? =
Who
will take care of them? The challenge will fall largely to family members. =
As
those parents age, they are asking, 'Who is going to take care of my au=
tistic
child after I am gone?' "</p>
<p>It is a question that haunts <a href=3D"http://topics.sacbee.com/Pearlie=
+Barton/" target=3D"_blank"><span style=3D"font-size: 11.5pt; font-family: =
"Georgia","serif";">Pearlie Barton,</span></a> 58, and =
her friend <a href=3D"http://topics.sacbee.com/Helen+Richard/" target=3D"_b=
lank"><span style=3D"font-size: 11.5pt; font-family: "Georgia",&q=
uot;serif";">Helen Richard,</span></a> 78, who also has an
adult autistic son.</p>
<p>"Right now, every time I leave Marlon out of my sight I'm takin=
g a
chance," said Barton, recalling how once, when she looked away for a
moment, her son wandered into a women's restroom. "I have to watch=
him
every minute. But I'm not going to be around forever."</p>
<h3>Research focuses on children</h3>
<p>Some people with autism, including <a href=3D"http://topics.sacbee.com/R=
ay+Richard/" target=3D"_blank"><span style=3D"font-size: 11.5pt; font-famil=
y: "Georgia","serif";">Ray Richard,</span></a> can spea=
k and care for
themselves with limited supervision. Some are able to work, if employers ar=
e
willing to adapt to their limited social skills. Others, like <a href=3D"ht=
tp://topics.sacbee.com/Marlon+Barton/" target=3D"_blank"><span style=3D"fon=
t-size: 11.5pt; font-family: "Georgia","serif";">Marlon=
Barton,</span></a> are entirely dependent
on caretakers and family members. Day programs, <a href=3D"http://topics.sa=
cbee.com/job+opportunities/" target=3D"_blank"><span style=3D"font-size: 11=
.5pt; font-family: "Georgia","serif";">job opportunitie=
s</span></a> and housing options
geared specifically toward adults with autism are limited.</p>
<p>"There's really nothing out there to meet the needs of these gu=
ys, even
guys who are as highly functional as Ray," Richard said. Her son is 43
years old and has Asperger's syndrome, a milder form of autism.</p>
<p>"Ray can type 40 words per minute," Richard said. "He has=
a
great vocabulary. He has a photographic memory, but I can't get him a j=
ob
because you can't really teach socialization. It's terrible."<=
/p>
<p>Life for her son might have been better, she said, had he had access to
training programs when he was younger.</p>
<p>Hundreds of millions of dollars a year are now devoted to research aroun=
d
autism. But the vast majority of studies and treatment are focused on child=
ren,
whose brains are still developing and who, with early intervention, have a =
good
chance to develop speech, social, and vocational skills.</p></div></div></d=
iv></div></div></div><br>
--0016e6475d18e7658f046da6b021--
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Lydia Glider-Shelley <mizlydia@...>
ledheadlydia
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