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Autism Experts: Facing a Tsunami of New Cases

Local experts and parents warn Congressman Meehan about coming crises.

HAVERTOWN–Congressman Patrick Meehan (R-PA 7) heard area autism experts sound a big alarm about a coming "tsunami" of autism cases of young adults about to age out of current school and special needs education programs.

Meehan assembled a group of experts in the research and treatment of autism from Delaware, Chester and Montgomery counties Monday in Havertown. The local discussion comes on the heels of a Congressional Oversight and Government Reform Committee hearing on autism programs that Meehan attended last week. Among the big names who testified at the hearing on Capitol Hill is Bob Wright, the former Chairman of NBC who has an autistic grandchild.

Local representatives from the Autism Society of America (Philadelphia Chapter), Autism Speaks (Greater Delaware Valley Chapter), Center for Autism Research, Melmark in Newtown Square, KenCrest Centers, Devereux, Delaware County Arc, Chester County Arc, Delaware County Intermediate Unit, Chester County Intermediate Unit, and the Montgomery County Intermediate Unit took part in the nearly two-hour discussion at the Delaware County Child Guidance Center.

The Upshot of The Meeting

Research into the causes of autism have come a long way in the last 20 years, but there is still a long way to go to identiy what causes autism. The group also described numerous scenarios in which government funding is so tightly micro-managed by different programs that services to the children and adults with autism are more inefficient than they would be if care providers and educators could have more say in exactly how money from the federal government is spent.

Several of the participants cited examples of how well-intentioned (federal and state) government funding programs actually hamper the way a student is treated. In one common scenario aides assigned to sty with an autistic student throughout the day are allowed to intervene and instruct an autistic student who may be acting out, but they are not permitted to help that student with academics. 

In other words, the reality is that the one adult who is going through every class with an autistic student is not permitted to actually help that student with learning. That function is paid for out of a different government program and if the aide steps in to assist an autistic student, the funding can be put at risk.  The end result is that an autistic student can't get academic help from the one constant person in their day because of bureaucratic regulations.

Many of the people who spoke at the meeting told Meehan that there is a crying need to allow the hands-on care providers and educators with more leeway in how federal money is spent so that is can actually be more effective on a case-by-case basis.

Young Adults With Autism Are About to "Age Out" of Education

Most federal and state programs only fund the education and care of people with autism until age 21.

According to officials, in recent years the number of people diagnosed with conditions on the autism spectrum (which covers a wide range of disabilities from more "mild" but still serious socialization skills to low-functioning patients who are non-verbal) has increased to now 1 in 88 children born.

That represents a daunting challenge and serious questions about how young adults with autism will find work, function in society and on the job and who will care for them once their parents get too old or inevitably die.

Speaker, including parents and educators told Meehan on Monday that Pennsylvania has a "waiver" program that will provide funding for the ongoing training and care of 400 adults with autism every year. Thousands of people with autism are now turning 21 in Pennsylvania every year.

That math has concerned parents, educators and professional care providers sounding an alarm.

Sue Tuckerman, an advocate for autistic children and adults, is the mother of 15-year-old autistic twins. She echoed the concern of many in the meeting when she told Meehan, "The world is not ready for these adults with autism..it's frightful. We hope that there is some hope for some degree of self-sufficiency (for autistic children who age out of government funded education programs)."

Tuckerman shared the concern of millions of families with autistic children: "What's going to happen when the parents are gone or too old to care for their children?"

Karen Kessler with the Montgomery County Intermediate Unit (which serves students with special needs) summed up the growing crisis by telling Meehan "At age 21, the bottom falls out."

For his part, Meehan told the group that improvements to the funding and services puzzle will come in small victories and he pledged to use his "bully pulpit" as their representative in Congress to voice their concerns and advocate for the needs of people with autism as the opportunities arise in Washignton.

With one in 88 children now being diagnosed with some form of autism, according to the re-elected congressman, the need to address treatment and research is clearly among the more pressing.

For more on the topic–a clip of Meehan at last week's hearing on Capitol Hill:

In one series of questions, Meehan asks a Centers for Disease Control expert about the skyrocketing number of cases of autism in the past few years.

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