‘Terrible’ waitlists for autism testing, diagnosis
GRAND RAPIDS, Mich. (WOOD) — Autism rates are on the rise in children across the U.S. and the demand for testing is being felt in West Michigan.
“We’ve seen about 30% more referrals than we did in 2020. We’ve also hired 30% more staff to try to manage but even with that, our wait times can be nine months to get in, which is terrible,” said Dr. Scott Halstead, vice president of outpatient and recovery services at Pine Rest.
The increase in testing, Halstead believes, is due in large part to a greater awareness of autism spectrum disorder, or ASD.
“There are TV shows, movies, where you actually see people on the autism spectrum featured, and so there’s a greater awareness,” he explained. “In the ’80s, many of these people were in institutions and they just weren’t really a public thing to be discussed. So there’s a much greater awareness. Social media has made a greater awareness. The fact that schools are required to provide special services, that that has sort of pushed the need to get diagnoses so that the schools can do their part, as well.”
Schools often evaluate children, but insurance typically requires a medical diagnosis to cover treatments like applied behavior analysis, occupational and speech therapy.
“Because it’s a covered benefit from insurance companies and because it’s expensive care, they want to be sure before they invest a lot of money in health care into somebody who needs treatment that you got exactly the right diagnosis,” Halstead said, “and so it is important to get that diagnosis so that you can start to receive those services.”
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Getting a diagnosis as early as possible can significantly affect outcomes for people with autism, but long waitlists complicate that process. In addition to greater awareness, Halstead added there is a national shortage of providers. For parents wanting to get help for their kids, it can be very frustrating.
“There’s so many challenges about this,” said Andy Hicks, a volunteer board member with Spring Lake-based Autism Support of West Shore.
Hicks has three kids, two of whom have ASD diagnoses. Most people, he said, don’t realize right away their child has autism.
“Because there are so many things, especially at a really young age, that can look like problems that could be explained by any number of issues. So it could be that someone’s just having their development in different order or something like that,” Hicks explained.
The first time he noticed was before his second child turned 2.
“We started noticing these milestones aren’t quite coming in exactly the right order and there’s some behaviors here that seem a little bit maybe like eccentric and started talking to the pediatrician about, ‘Is there is there anything that we should be concerned about?'” Hicks recalled.
Eventually he decided to move forward with an ASD evaluation. It took nearly a year to get one for his child the first time around. The second time took even longer partly due to the pandemic, but more due to the fact that his son was under 2 years old.
“If there’s a child in a biological family that’s affected by autism, there is an increased rate of autism among other siblings, so we became aware a little bit earlier of ‘Hmm, some of these things look similar,’ and then started the process of getting an evaluation,” Hicks explained. “It took another level of specialty for somebody to be able to do that, so the availability of providers was even less so.”
Hicks knew how important it was to get a diagnosis as soon as possible.
“Autism is a condition, in particular, where the research overwhelmingly shows that the earlier access you get to services are profoundly more beneficial because with the development process, there’s a lot of flexibility in neuroplasticity with very young children, that is less so as they get older and into adulthood,” he said.
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He now works with other parents who are going through the same process.
“Many parents that are on the waitlist that are for varying lengths of time, depending on what insurance they have,” Hicks said. “You first of all have the issue of, well, who will your insurance pay for you to visit? Then you also have the issue of who will they accept a diagnosis from?”
Essentially, parents have to first identify that there’s an issue, talk to their child’s pediatrician, find an in-network provider who can evaluate their child and make sure their insurance accepts that diagnosis before they can access treatment and services.
“There are a lot of systemic obstacles and hoops to jump through,” Hicks said.
He encouraged anyone going through the process to work with their child’s school while they wait.
“For kids who qualify for the school diagnosis, they can generally get special services even at a younger age than kids who are going into general education. They can qualify for things like early childhood, special education and other services that can be covered, and that can include meetings with school occupational and speech therapists, and a lot of those things can really help out quite a bit even while somebody is on a waitlist,” Hicks advised.
While it’s easy to get discouraged, he said to never stop advocating for your kids.
“When you’re at your most frustrated, it’s because you’re being a great advocate and you’re working hard and you’re not settling,” he said.
He added that it’s never too late to access those resources.
“There are more people that might have previously struggled without knowing why or without knowing what was going on who are now able to access the screenings and find out, jeez, this is related to autism, and I can get some help with this, so that’s certainly been beneficial,” he said.
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