In the mid-1990s, Brick Township residents Bobbie and Billy Gallagher were desperate to find help for their two young children with autism.
“I had started attending a parents’ support group, and it seemed like there were a lot of parents sitting around the table whose children had been newly diagnosed,” Bobbie Gallagher recalled. “So I sent out a survey to parents in the town asking if anybody had a child with autism, because it seemed like there were so many of them.”
Sending out a survey was a lot harder back then, at the dawn of the electronic age.
“We got zero help from the school district with that survey,” Billy Gallagher said. “Although the school district sent home who to vote for in the school-board elections – that made it into kids’ backpacks – our survey would not. But we found the bus drivers and the aides on the buses helpful in distributing it.”
Between that, the bulletin board in the Brick branch of the Ocean County Library, and a small ad in a weekly newspaper, the Gallaghers got enough surveys out to produce eye-opening feedback – 45 Brick residents answered in the affirmative.
New Jersey’s department of health declined to act on the survey, but it got the attention of the Gallaghers’ congressman, Republican Chris Smith, who met with them in September of 1997.
“He said the information we gathered was important and he would take this to the next level,” Bobbie Gallagher said.
In 2000, aided by a public push from NFL quarterbacks Dan Marino and Doug Flutie – both of whom have children with autism – Smith’s bill for autism research became codified in federal law. Those provisions have expanded over a quarter-century, and last month what has become known as the Autism CARES Act was reauthorized by Congress and signed by President Joe Biden. The law funds $1.95 billion over five years for autism research and intervention programs at the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration.
Smith remains the legislation’s primary author, and speaking in mid-December on the floor of the House of Representatives, he praised “Bobbie and Billy Gallagher, with their indomitable commitment to help their two children, Austin and Alana, and everyone else with autism,” as the catalysts.
“Brave and remarkable parents,” Smith called them.
Their grassroots movement succeeded, but it never really ended.
Progress and disagreement
Today the Gallaghers live in Egg Harbor Township to be close to their oldest daughter, Chelsea, and her three children. They continue to care for Alana and Austin, who are 33 and 32 years old, respectively. And they keep a close eye on the law they inspired and the changes it wrought.
“In the very beginning it was just about counting the cases – we didn’t know how many children had autism,” Bobbie said. “Once they came out with the surveillance we saw it wasn’t a Bricktown issue; it was across the nation. You need to know the numbers in order to get the funding."
According to the CDC, approximately 1 in 36 8-year-olds in the United States are on the autism spectrum, and the rate is slightly higher in New Jersey (1 in 35). That knowledge sparked an evolution of care at the school level and throughout the insurance industry. In 1997, federal spending for autism research was a meager $287,000.
“When Alana was diagnosed, the services were so bad,” Bobbie said. “She got one hour a week in a group setting with five other children. Now in early intervention, it’s individualized, but for the most part parents can get up to 40 hours a week for their children.”
Keith Wargo, president and CEO of the advocacy powerhouse Autism Speaks and a Bay Head resident, put it this way: "Families like mine have benefited enormously from the transformative impact of this law."
The vast improvement does not mean the matter is settled. There is spirited debate within the autism advocacy community about how funding should be allocated along the spectrum, which ranges from individuals who are higher-functioning to those who are considered to have “profound” autism.
“If we don’t designate something specific to profound, we might lose that funding for research for them,” Bobbie Gallagher said. “Chris (Smith) added in the profound autism part (in the current reauthorization), which our two children do fall into. They’re predominantly non-verbal; they’re going to need help for the rest of their lives. This is a group of individuals of such high need, if we don’t point it out (in the bill), we’ll lose the services, we’ll lose that ability to focus on what will make their lives better so that they can become more independent.”
She has advice for advocates who disagree on the details.
“I say although there might be controversy over this, don’t argue against (the bill), just argue to add to or change it the next time it comes around,” she said. “But some people say, ‘You know, if it’s not going to have X, then we don’t want it.’ Well, let’s not throw the baby out with the bathwater.”
On autism's causes and latest challenges
One area of autism research that’s been slow-moving since the 1990s is identifying a cause. Bobbie Gallagher credited SPARK, an autism research community, for providing insight into questions about the genetic nature of the condition. The genetics vs. environment discussion has been ongoing for decades.
“Some people, very few, have found their genetic cause of autism from SPARK,” Gallagher said. “We’re chiseling off little by little. Maybe what we’re going to find is there is no one cause.”
She also cited a study by the Rutgers School of Public Health that showed a marked decrease in profound autism cases since 2000 along with a rise in the higher-functioning population.
“The numbers are flipping,” Gallagher said. “If the numbers are flipping, there’s got to be a reason.”
An immediate challenge for the autism community is handling the burgeoning adult population who age out of school-based services at age 21 – “a cliff that they fall off of,” as Bobbie Gallagher put it.
“Alana went almost a year without services post-school just because they weren’t available,” she said. “Alana lost skills, she regressed because the services fell off.”
There are day programs for adults with autism, but Gallagher said many of them pale in comparison to the support the schools offer.
“It becomes babysitting, which is terrible to say,” she said. “A lot of individuals who were in good programming most of their education time lose skills as they get older because there’s nobody to keep them going. So that falls on the parents – and the parents are tired by the time their children are 21.”
Bobbie and Billy are still looking after Alana and Austin, with some help.
“Alana has a caretaker who comes here every day, Monday through Friday, and takes her out in the community,” Bobbie said. “Austin has somebody come a couple of times a week, but for the most part, he’s our responsibility. He’s a little more challenging than his sister to find help for.”
An emotional moment
Against this backdrop, it was rewarding for the Gallaghers to hear their names mentioned on the floor of the House of Representatives last month. In his speech Smith also touted Bobbie’s 2016 book on the family’s journey, “A Brick Wall: How a Boy with No Words Spoke to the World,” for which he wrote the foreward.
“It was pretty emotional for me,” said Bobbie, who is now a board-certified behavior analyst.
She’s come a long way from that first survey, trying to tackle a mountainous problem with sheer grit and not much else.
“Your kitchen table is covered in paperwork, and you’re going through it just trying to find somebody who will listen,” she said. “It’s nice to know we started something.”
Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues.
