Shifting for autism care | Spectrum
Trial and error:
ÖGetting an autism diagnosis is a hurdle that families find more or less a challenge, depending on where they live. It was easy for the Lanes to get a diagnosis for Aaron. When Aaron was 18 months old, he was assessed at the University of Kentucky. “We were lucky,” says David. It was far more difficult for Jett’s family to find diagnostic expertise. Although Jett started exhibiting some atypical behaviors at the age of 3, it took five years to figure out why. Problems at daycare and then at school resulted in Jett’s parents dragging him from doctor to doctor. At the age of three and a half, Jett was diagnosed with attention deficit hyperactivity disorder for which he was taking stimulants; he was also prescribed antidepressants and antipsychotics. Nobody mentioned autism.
An online database of autism resources called GapMap shows how far the average person would have to travel to get a diagnosis in a particular state. In New Jersey this distance is about two miles; in Nevada it’s more than 30 miles. Such differences can be due to a variety of factors, such as a state’s economic health, population density, and the strength of lobbying local autism communities. According to GapMap, more than 83 percent of all US counties lack any diagnostic services. This gap in care is important because early diagnosis “should help accelerate access to therapy, which can be more beneficial if provided early and consistently,” says Wall, who led the GapMap project.
However, the amount of resources does not always match the quality of care. In West Virginia, the average distance to get an autism rating is only about 11 miles, but Jett’s parents hopped from specialist to specialist for years before Harris himself noticed similarities between Jett’s experiences and those of an autistic friend. She called the friend and he helped her find a psychologist who eventually diagnosed Jett with autism at the age of 8. “At first I felt relieved. Then I was annoyed that it took so long, “she says.
In a 2017 study, researchers compared the chances of being diagnosed with autism in children by nurses in 48 states. They found that children living in the southeast were about half as likely to be diagnosed with autism at the age of 6 as was typical for 6-year-olds overall, based on, among other things, the age of the mother, the sex of the child, and the Community income were controlled factors.
Treatment options also vary widely from state to state. In West Virginia, Jett’s mother faced a shortage of professionals known as Board-Certified Behavioral Analysts (BCBAs) who are qualified to deliver ABA. This therapy can improve learning, social skills, and daily functioning in people with autism, data shows. However, a lack of BCBAs means that it is often in the hands of less skilled technicians who may be providing substandard care. According to a 2020 report, states require at least three BCBAs per 100 autistic children to provide adequate care.
But West Virginia only has a little more than one BCBA for every 100 children with autism. Although Jett received 11 hours a week of one-on-one therapy prior to the pandemic, it has dropped dramatically since then. “We have an hour and a half a week and that’s a group, so he’s basically hanging out with some other kids and playing board games,” says Harris. BCBAs are especially rare in Idaho, Oklahoma, and Mississippi; these and a number of other states have less than one BCBA per 100 autistic children. In contrast, in Massachusetts, Vermont, and New Hampshire there are about nine, six, and five BCBAs per 100 children with autism, respectively. More than half of US counties have no BCBAs at all.
In Kentucky, where there is only a little more than one BCBA for every 100 children with autism, Aaron was well cared for until he was 12. He was given individual ABA for up to 30 hours a week, which is enough for optimal progress, research shows. In middle school, however, he became more and more aggressive. “That was a very difficult time. We were just looking for solutions, ”says David. Aaron was given behavioral drugs that worked at first, but then didn’t. Finding a good school and therapy for him was an uphill battle. “We couldn’t find any good options in Kentucky,” says David.
Other clinicians important to autism care, such as speech therapists, pediatricians, and physical therapists, are also in short supply in some states. In the northeast, more than half of children with autism see multiple specialists, according to a 2019 study. But in the South, which includes Kentucky and West Virginia, only about one in three autistic children receives this type of help.
Paying for care is another aspect. All states and Washington, DC have autism mandates – laws that require health insurers to cover autism treatments – but these mandates vary widely in scope. For example, Massachusetts doesn’t have age limits on coverage, but Mississippi will end benefits once the child is 8 years old and many others will end coverage between ages 18 and 21, according to a comparison of state mandates last year has been published. Oklahoma and several other states have limits on hours of service, typically 25 hours per week, and 23 states have annual service limits of between $ 20,000 and $ 72,000.
The number of people with autism who qualify for services through Medicaid also varies from state to state, according to a study published in July. In most states, however, eligibility criteria have eased over the past decade, resulting in a five-fold increase in the number of Medicaid programs that specifically cater for people with autism.