NJ kids wait a year for autism diagnoses — this nonprofit found a faster way
♥ New Jersey families are waiting up to a year for an autism diagnosis, delaying critical early intervention during a child's most important developmental years.
⚡ A Stirling nonprofit says it's changing that with the state's first 30-day autism diagnosis pathway by connecting families with available specialists.
❤️ The program has already helped families get faster answers and aims to reshape autism care across New Jersey through education, care coordination and technology.
Imagine waiting up to a year for an autism diagnosis for your child?
That is what’s happening in New Jersey. Many parents are told to take a wait-and-see approach and to see if their child grows out of it. But while parents are waiting, their child is missing out on critical early intervention during their most important developmental window.
Thankfully, a non-profit called The Uncommon Thread, based in Stirling, Morris County, has become the first and only in the state to offer a 30-day pathway — an autism diagnosis within just one month.
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New Jersey autism diagnosis wait times leave families waiting months
The prevalence of autism in New Jersey is 1 in 29, and there are just not enough specialists to handle the number of cases in the state. That’s why there is up to a year wait time, said Gregg Carr, founder and managing director of The Uncommon Thread.
“So if you lose a year, you’re losing almost 20% of that time where the child can be shown the greatest amount of success,” Carr.
He has seen children getting diagnosed later and later in their life, which is unacceptable to him.
At The Uncommon Thread, they work with 72 autism specialists who can do the evaluations, and they look for their cancellation times.
“So, anytime a family comes to us for a potential diagnosis or an evaluation or a screening, we’ll actually reach out to all 72, and whoever has availability within 30 days, we’re getting that child on board with that particular group,” Carr said.
Someone always has an availability, he added.
It works well in getting those diagnoses a lot of sooner. Carr said the 30-day Pathway launched only six months ago, and so far The Uncommon Thread has helped 16 families get a faster diagnosis.
“We’re working on it. It’s more about how do we get the word out that we can help these families getting this early diagnosis as well as making sure that we can keep up with the capacity like everybody else out there,” Carr said.
How the 30-day autism diagnosis pathway works
The capacity issue is being addressed by The Uncommon Thread by having all these specialists available, looking at their cancellations, and getting families in for an evaluation much earlier.
Another reason why so many families often wait up to a year for a diagnosis is that there is a training and education issue, Carr said.
Families and pediatricians need to realize that there is a faster way to get these evaluations done. A diagnostic tool called Early Point helps speed up the entire process of the evaluations, and helps on the diagnosis end to save time with a specialist, Carr explained.
As far as there being an infrastructure issue, Carr said somebody has to shepherd these families through the process and help navigate them through things like the insurance process, knowing where the specialists are located, addressing early concerns, and helping them get good services. Since there is really nobody to do that, Carr said it could take six months to a year to get an evaluation.
While The Uncommon Thread is the first in the state to offer the 30-day Pathway, other larger hospitals and groups are starting to say they, too, can get a diagnosis in 30 days, as well, Carr said.
Insurance helps cover many ABA services but the non-profit desperately needs donations to help pay for higher-quality care, bringing in better technology, and AI initiatives to help with kids’ programming, Carr said.
Nonprofit guides New Jersey families through autism services
“We have several family care coordinators who basically set up a conversation with the family. We ask about their child. We ask about whether they have insurance or not, and we move and immediately set up what we call a family education meeting, where the family comes in and speaks with our case managers,” said The Uncommon Thread’s Director of Outreach, Christine Hegan.
Families learn about autism, efficacy, the services that are provided, and different therapeutic settings, Hegan said.
The Uncommon Thread also works in homes, preschools, daycares, public school districts, and some YMCA’s all over the state.
After that one-hour meeting, families are better equipped to make decisions about next steps, Hegan said. The Uncommon Thread guides families through all the processes, which include finding insurance, find a therapeutic setting that works best for their child and family. They put a team together quickly to get the ball rolling and get these kids the help that they need, Hegan said.
“Getting these families the information that they need, making sure that we have an infrastructure to kind of shepherd them through the process, and then making sure we have the capacity to kind of support the amount of kids that are being diagnosed with autism,” Carr said.
Early autism intervention can change a child's future
If any family is interested in getting their child evaluated for autism, please reach out to The Uncommon Thread at 908-604-4500 or email them.
“We’re not just providing care. We’re really helping redesign how autism care works in New Jersey. A year is just way too long to wait when a child’s future is developing right now. The earlier we can get these children into services, the better and more improved lives that they’ll lead later on,” Hegan said.
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