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 autism.
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 children.
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."mobilehome - health
Mark Roth: firstname.lastname@example.org, 412-263-1130 and on Twitter: @markomar