Government programs, people look to expand autism services

The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act was signed into law by President Donald J. Trump this past Monday. The bill was co-sponsored by Rep. Chris Smith (R-N.J.), said director of the New Jersey Center for Autism Excellence (NJACE) Dr. Elizabeth Torres, and sets aside $1.8 billion to cope with the challenges and critical needs of the autistic population.

It also expands government programs to include older people with autism and enables tracking of the disorder across the lifespan, she said. Currently, very few services are available for this population and many autistic adults often stay home and fall into a deep depression, she said.

“The most misunderstood part of autism is who exactly is affected. Generally, certain groups of people are overlooked, such as girls and people past the early developmental stages ... I’m glad the bill was passed. I agree with what it stands for, and I hope that people will learn to recognize the attributes of autism more clearly as well as be able to intervene more easily,” Torres said.

Eight in 10 New Jerseyans know someone with autism, according to a survey conducted by the Eagleton Institute Center for Public Interest Polling. The development of the bill started in 1997 when Brick parents met with Smith to talk about federal support for autism, according to NJ Advance Media. At the time, only approximately $287,000 was being spent on autism-related programs.

“As caretakers, parents are acutely aware of the obstacles faced by a lack of services and supports for their children,” said Jennifer Schonger, a Family Faculty employee at Children's Specialized Hospital. “It can be stressful for all involved when there are barriers to meaningful opportunities and support throughout the lifetime.”

Schonger has also served on the advisory board for the NJACE for the past year. One of her daughters is autistic, she said.

“The societal lack of understanding on what autism actually means is also a huge part of the problem. So good legislation is extremely important. Parents are an instrumental part of making that happen. But I do think that autistic people should play as big a role as possible considering these issues most directly affect them so we need to make sure we are always listening,” she said.

The bill is a big step toward treating autism as a medical disorder rather than a behavioral issue, Torres said.

“Presenting autism as a bad behavior implies a level of intent in the person that is inaccurate, as these manifestations characterized by sensory-motor differences are something the person cannot help,” she said. “The bill will provide resources to enable refocusing the current narrative, educate the public and help support the person’s nervous systems. It is indeed a great accomplishment.”

The bill also creates new funding opportunities for the NJACE, which opened at Rutgers last year, and encourages the center to continue its campaign to help adults and aging autistics, Torres said. The center also played a role in the development of the bill.

“Although a very young center that just opened, indirectly we participated in alerting both Trenton and our federal representatives about the issues in our state. By running statewide events that play an emphasis on opportunity for employments and help people in the state network and collaborate on those issues, we are contributing to going beyond autism awareness to start campaigning for autism acceptance. This bill will help us drive that campaign and bring it from Trenton to Washington,” she said.

Despite the achievement of signing the bill into law, Schonger said that it also raises some possible red flags.

“I think it’s really interesting that no autistic advocacy groups were directly listed as endorsing the bill. Autism Speaks is one of the main proponents and that is a red flag to me, as they have done a lot of damage in the past as to how autistic people are viewed and where funds are allocated. Huge amounts of money have been spent on 'cure' and 'intervention' while much less has been spent on actually improving quality of life and accessibility,” she said.