July 14--As the Autism Society of America wrapped up its annual conference here
Saturday, a new focus began to emerge -- the growing number of adults with
In Pennsylvania alone, a state census estimates there will be 20,000 adults
living with autism by 2020, and as many families already have discovered, the
number and range of services available for adults is much less than for
Besides the growing number of young adults with autism who are aging out of the
school system, where they can remain until age 21, there are also an unknown
number of older citizens who have been living with autism for years without ever
getting a diagnosis.
One of the speakers at the conference, retired natural gas engineer Larry Moody
of Minnesota, was not diagnosed with Asperger's syndrome, a high-functioning
form of autism, until he was in his 50s. While highly successful in his business
life, he struggled in his social interactions.
"My brother once said to me, 'You know what the difference is between being
crazy and eccentric? Net worth.' And then he said, 'Larry, you're eccentric,'
but it was only five or 10 years later that I found out how eccentric I was."
The issue of adults with autism drew the attention Saturday of two congressmen,
Rep. Mike Doyle, D-Forest Hills, and Rep. Chris Smith, R-N.J., who co-chair the
Congressional Coalition for Autism Research and Education.
Speaking at the conference's final session, Mr. Smith said that studies have
shown adults with autism often begin to plateau in their skills and even
decline, because they no longer have the rich variety of support programs that
were available when they were schoolchildren.
Autistic adults have the highest rates of unemployment of any disability, he
said, with one study showing that in 2009, only about a third of autistic adults
had a job, compared with about 60 percent of other disabled adults.
The financial burden of finding services for autistic adults often falls on
families, added Mr. Doyle.
"Many families affected by autism are not getting the education, employment and
housing services they need," he said. "Families are spending tens of thousands
of dollars out of pocket for care and fighting insurance companies for coverage.
The current autism coverage system is woefully inadequate."
One study estimated families can spend up to $50,000 a year for autism services,
or $3.5 million to $5 million over a lifetime.
Thomas Insel, director of the National Institute of Mental Health, who spoke at
the conference on Thursday, agreed that the problems of adults with autism get
far too little attention.
While research funding for autism has now reached about $400 million a year,
only $64 million, or about 16 percent, is focused on research of services for
people with autism, and hardly any of that is aimed at adults.
When asked how families could change the funding climate in Washington, Mr.
Smith and Mr. Doyle both noted that they got involved because of visits from
families in their districts who made a strong case for help.
That kind of personal attention can capture the attention of politicians who are
pulled in dozens of directions, they said. Or, as Pennsylvania Gov. Tom Corbett
said to the conference on Thursday, "many of you have played a very important
role in educating public officials, and let me tell you, it's not easy educating
public officials because many times you have to dangle that shiny object in
front of us and get us to pay attention."
While Mr. Smith and Mr. Doyle said they were able to get Congress to reauthorize
the Combating Autism Act in 2011 for three years, at a cost of $693 million,
their attempt to pass a new bill focused more on services to autistic people has
gone nowhere so far.
"We have to face the reality that we've got a group of new members who have come
to Congress with almost a singular mission of paring federal spending, and
they're a large bloc in Congress," Mr. Doyle said.
"That is why I think it's important to emphasize the message that when we don't
invest in [autism services] on the front end [when children are younger], we pay
for it on the back end."
Mark Roth: firstname.lastname@example.org, 412-263-1130 and on Twitter: @markomar
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