West Virginians seeking services or resources related to autism have a new way of finding them.
West Virginians seeking services or resources related to autism have a new way of finding them.
April is World Autism Month and the West Virginia University (WVU) Center for Excellence in Disabilities has developed a new directory and interactive map of available autism resources across the state.
Lesley Cottrell, the center’s director and a professor in the WVU School of Medicine’s Department of Pediatric Research, said finding services like family support groups or music therapy has been the most common issue for the center’s patients and clients for years.
“We were providing that verbally when they would come see us, but then there was this larger group who was in that middle gray area who were experiencing the same challenges,” Cottrell said. “We knew over time, West Virginia was advancing in the number and variety of services for individuals with autism, neurodivergent individuals and their families. So we wanted to showcase that, we didn’t want to just list WVU services. Someone from another area of the state might have a place right next to them that they could go to.”
Now, the new website allows Cottrell and her colleagues to direct people across the state to their local services.
“We tried to tap into existing structures, but then really take a team approach, a statewide team approach with our partners to provide this,” she said.
Cottrell said the team welcomes feedback to ensure their directory is up to date both with providers and types of services needed by the community.
“We tried to be very exhaustive in our list,” she said. “And then related to that, as providers may come and go, we keep that updated, so that someone can find it in maps, the actual address, the phone number, the office hours are on there. We try to keep that as up to date as possible. If we did miss something, or if there’s a type of therapy that they’re looking for that is not on this list, to keep it going it’s really important to get that feedback.“
A new analysis of special education data hopes to advance understanding and solutions for students with the greatest need.
A new analysis of special education data hopes to advance understanding and solutions for students with the greatest need.
During the past five years, enrollment in West Virginia’s public schools has declined by nearly 10 percent. In 2017, 270,613 students were enrolled in West Virginia public schools. By the fall of 2023, that number had dropped to 245,047.
However, educators like Rachel Brown say during the same period the numbers of special education students have gone up.
“Everyone’s overworked because our numbers keep rising,” she said. “And our county has done a lot of cuts this year, because our enrollment numbers have gone down, but we couldn’t cut. Our numbers have gone up.”
Brown is the intellectual disabilities and autism (ID/AU) special education curriculum specialist for Kanawha County Schools. She oversees more than 60 self-contained classrooms across the county, where students with the most complex needs, who require the most support, are placed.
The increase is not unique to Kanawha County, the state’s largest school district.
“It’s increasing everywhere,” Brown said. “I was discussing with a specialist yesterday. Ten years ago, she was in a rural part of the county. And I was like, I bet you had a sweet, tiny little classroom of like, five, because our maximum self-contained is 12. And now in the same location, we have two self-contained classrooms at this school, and they’re both full. So that’s a huge change in over a decade.”
A new analysis from the Institute for Policy Research and Public Affairs at West Virginia University’s Rockefeller School of Policy and Politics is quantifying some of those changes.
“In West Virginia, it is a problem of some magnitude,” said Samuel Workman, director of the institute. “We’re talking between, depending on the year you look, anywhere from 40,000 to 50,000 students. So it constitutes about one in five in the current year of students, 20 percent of our students. That’s a great number of our young folks who are on independent educational plans.”
Graphs display the increase in IDEA plans in West Virginia over the past five years.
Credit: Samuel Workman/West Virginia University
Workman and his team analyzed the last five years of Individuals with Disabilities Education Act data (IDEA), from the West Virginia Department of Education. The report compiled a data set from 2017 to 2023 addressing the demographics, geography and trends in independent educational plans (IEP), in the state.
“States will monitor things like how often these kids are in normal classrooms, or standard classrooms, I should say, any disciplinary actions taken against these children, and sort of assessing performance over time, both for their sake and relative to other students,” Workman said.
Workman’s study shows the breadth of conditions – both physical and developmental – covered by IEPs. They run the gamut from difficulty with vision or hearing, to psychological issues.
The largest category is now “specific learning disabilities,” which Workman said the federal government defines as psychological problems with processing language. But categories like autism and developmental delay have witnessed increases, especially in recent years.
“Which I understand to be associated with a whole host of environmental problems in children, substance abuse in a home being one,” Workman said. “But those are the sorts of things we are seeing at least at present time, explosion is probably too strong of a word, but certainly sharp upticks in the number of children categorized within those disability categories versus the traditional sort of hearing disabilities.”
The analysis also reveals interesting demographic distributions, including the fact that a near two-thirds majority of students on IEPs are male.
Brown said her experience aligns with that finding, as does research into the diagnosing of the condition.
“We do have a higher rate of boys in our autism classrooms,” Brown said. “The research [shows] females are able to mask better, so they’re not identified as frequently or as often early on. Even with ADHD, boys are often identified before girls.”
A graph from Workman’s IDEA data analysis shows the discrepancy in IEPs between male and female students.
Credit: Samuel Workman/West Virginia University
More data and study is needed to better understand such discrepancies, as well as the relationship between the various factors driving the trends, including the opioid crisis and lack of access to resources like early childhood interventions.
Workman credits the state’s Department of Education for making the data easier to access. He hopes his study helps to make it easier to use and understand and ultimately bring more eyes to the issue.
“The way I organize data is not the way a public health person would organize the data, it’s not the way an education professional organizers data,” Workman said. “Continuing to work to make that data as integratable as possible with our public health systems and our education systems will work wonders in understanding the nature of the problem, what we’re dealing with.”
Workman said with one in five students having IEPs, the far-reaching impact of education – from the immediate impact of each student to the broader implications for workforce development and businesses – makes a better understanding of special education needs imperative.
“The degree to which we can better understand these children, help them to the extent possible to lead sort of productive, rich lives, both at home and at their place of work and all this sort of stuff, the better off the state’s going to be. So it’s a real problem with a real need for lots of eyes,” he said.
Brown agrees.
“I always have hope, that’s the best part of being a special educator, you always have to hope,” she said. “I’m hoping that this will help make special education a priority, and just education in general a priority in our state.”
West Virginia University researchers are using artificial intelligence and other advanced technologies to help diagnose people with autism.
The program is aimed at more easily identifying phenotypes related to Autism Spectrum Disorder. These phenotypes are noticeable traits or characteristics a person with ASD might have.
“Autism phenotyping is something we are still in the dark ages with. We have no clue how many different types of autism we are dealing with,” said WVU professor Xin Li, one of the project’s head researchers.
Technology like neural imaging and behavior imaging, along with eye-tracking data will help identify these specific traits. Li says he hopes this data will find different types of ASD and help reduce the gap between a child’s birth and their diagnosis. The average age of a child newly diagnosed with ASD is 4 years old — Li says part of the goal of this research is to reduce that age in half, aiming for diagnoses at 2 years old. The earlier the diagnosis, Li says, the more effective the treatment.
Li says this research is important because of how little is known about ASD compared to other disorders. The better the technology available to diagnose those with ASD, the better phenotypes can be successfully grouped into ASD subtypes.
“If we think about something we’re familiar with — for example, a butterfly… a butterfly can have different wings, have different patterns, colors… Those are the easy traits for laymen to tell a different species from one butterfly to another one,” Li said.
Recent data from the Centers for Disease Control and Prevention says 1 in 54 children in the U.S. are diagnosed with ASD.
Shepherd joins Concord University as the second campus-based satellite site for Marshall’s autism services program.
Under this agreement, a full-time student support specialist will be available on Shepherd’s campus, and Shepherd faculty and staff will get training. Professors will receive support in their instruction to students enrolled in the program, and students interested in the field will have opportunities for clinical placement experience.
Marc Ellison, executive director of the West Virginia Autism Training Center, said in a news release that about half the students who have autism across the U.S. have average to above average intelligence — but have other significant problems that lead to unemployment or underemployment.
He said a significant reason for these issues is because of improper or ineffective support in higher education, or a lack of support entirely.
“The transition to adulthood, especially for students who are at risk, is really an overwhelming experience,” Ellison said. “Universities have been working for years to figure out how to best support at-risk students. Because of things that have nothing to do with their intelligence, students with autism are perhaps the most at-risk in higher education these days.”
The West Virginia Autism Training Center was established in 1984 and has served nearly 3,000 families and more than 5,000 educators over the past 34 years.
Thousands of autistic children in West Virginia find themselves stuck on treatment wait lists for years, missing their best chances for improvement as 2- and 3-year-olds.
Even if they are covered by private insurance, these children have to wait years for openings in the small number of programs in the state. Even worse, children on Medicaid may never receive the care they need since most of the best programs in the state don’t accept Medicaid payments.
The Centers for Disease Control and Prevention estimates that 1 in 68 children have an autism spectrum disorder, a series of complex brain disorders characterized by communication difficulties, social and behavioral challenges, and repetitive behaviors.
Autism rates can differ widely from state to state, though. In New Jersey, for instance, the rates are 1 in 41, while in South Carolina the rates are 1 in 81. No mechanism exists to track autism rates in West Virginia.
“Less than 2 percent of any children with autism receive any evidenced-based treatment. So we know that the ability to give these kids the best outcome is really limited by the lack of services,” says Susannah Poe, director of the intensive Autism Delivery Clinic at West Virginia University.
Credit Kara Lofton / WVPB
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WVPB
A child works with a behavioral analyst at the intensive Autism Delivery Clinic in Morgantown.
Poe says that 2 percent is an estimate the non-profit Mountaineer Autism Project came up with after a 2010 survey of West Virginia Applied Behavior Analysis practitioners like herself about 5 years ago. To be clear, many practitioners think that Applied Behavior Analysis – ABA for short – is the best method for treating autism, if not the only one. So the 2 percent is only referring to kids receiving ABA therapy.
“What we know about treating children with autism is that the earlier we can identify children with autism and the more intensively we can offer an individualized treatment plan, the better outcome the children will have,” says Poe.
So Who Are the 98 Percent?
“If early intervention is the key, they’re missing that mark,” says Tom Riser in a recent interview. Tom and Lindsay Risers’ 9-year-old son Ricky has autism.
For a while Ricky was receiving ABA therapy in the Risers’ home. They hoped it would help his speech, behavior and the development of self-care skills. It didn’t.
The therapy’s failure in Ricky’s case may be because research has found ABA is only truly effective if it is intensive – a minimum of 20 hours a week, with the gold standard being closer to 40, the kind of program being offered in Morgantown. Ricky was receiving just 3 hours a week.
Credit Kara Lofton / WVPB
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WVPB
Ricky Riser (age 9) stands with his parents in Pineville. Ricky is autistic and struggles with communication, but is “a happy kid,” according to his parents.
“He has services at the school – he gets speech therapy for 30 minutes a week, occupational therapy 30 minutes to an hour a month, and I don’t think there’s really any physical therapy,” says Lindsay Riser. “We don’t have private insurance – he just has Medicaid.”
Medicaid Just Isn’t Covering It
No ABA therapists in the state are currently taking Medicaid or have been able to successfully bill Medicaid. So when Tom changed jobs and the family lost private insurance, they also lost the ABA therapy.
Jill McLaury is founder of the ABA facility Bright Futures in Hurricane. Though the number of board certified ABA practitioners has more than doubled in West Virginia in the last five years, McLaury says there are still not nearly enough to cover the need. Also, while federal legislation requires Medicaid to cover ABA services, there is enough red tape that most clinics like hers don’t bother trying.
“To do Medicaid I would have to be a licensed behavioral health facility and right now I’ve got a waiting list of over 50 families who are private insurance that I’m not able to serve,” she says. “So from a business perspective for me to then have to do a $1,500 application fee, to have a lot more scrutiny over the services – it doesn’t make sense when I’m not even able to provide services to the clients who already have funding.”
Credit Kara Lofton / WVPB
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WVPB
A child takes a play break at the Applied Behavior Analysis Center at the Autism Services Center in Huntington.
McLaury says the lack of ABA providers is not just a West Virginia problem, but a national problem. Every single autism center I contacted had a significant waiting list for services.
“In West Virginia, even your more populated areas of the state, the families that do have coverage are also still on waiting lists,” she says. “So it’s absolutely going to be more of a problem in more rural parts of the state.”
Like the Risers in Pineville. They moved back there from Florida to be close to family who can help them care for Ricky. Both parents have to work (they commute an hour to Beckley) in order to keep the family financially afloat. But there are no ABA services available to them there – or even in Beckley, the closest metropolitan area.
Even if they were, they don’t have the insurance to cover it and wait lists can be years long. Also, many groups prioritize giving services to younger children (2-3 year-olds) versus school-aged children like Ricky, because ABA is most effective the earlier it’s started.
So What Happens to Families Like the Risers?
“He was out of control,” says Tom. Lindsay clarifies – “He was becoming more aggressive.”
“Despite being on Risperdal, which is supposed to be for aggression,” says Tom. “So we were at wits’ end because we didn’t know whether he’d be able to go to public school or not. So then we’re starting with what do we do beyond that?”
So the Risers – desperate – decided to try something different. They made an appointment at Autism Health! in Beckley – a clinic that focuses on the relationship between poor gut function and poor sleep patterns. They said they were pretty skeptical of the clinic at first, but it got to the point that “we were like – ok we’ll try anything.”
Janet Lintala is the founder of the clinic. She said kids like Ricky come into her office all the time.
Credit Autism Health!
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Janet Lintala is founder of Autism Health! clinic in Beckley and author of The Un-Prescription for Autism.
“They can’t sleep, they’re constipated, they have acid-reflux,” says Lintala during a recent interview about her new book. “They’re in quite a bit of discomfort and pain, but they can’t tell anyone that because most of them don’t have their language. And so how they tell us that is through irritability and difficult behaviors. And that’s what ends up getting medicated. We all see the difficult behaviors – the difficult behaviors the doctors go, ‘Here – here’s an antipsychotic,’ and those painful underlying conditions never get addressed. It’s like a merry-go-round they can’t get off of.”
Lintala, a chiropractor by training and mother of an autistic child, prescribes a combination of digestive enzymes, probiotics, antifungals, improved diet, special supplements and hyperbaric oxygen therapy to her patients. For Ricky, it proved really effective.
“His bowels regulated. Before he was either stopped up or going four or five times a day – so just the relief that he gets with the enzymes just for his bowels alone is worth the price of admission,” says Tom.
Ricky is also sleeping better and has become less aggressive to the point that he was able to be taken off of Risperdal. The Risers are quick to point out that their son still has autism – this wasn’t a cure, nor were they expecting to cure him.
janet_lintala_q_a.mp3
In a recent Q & A, Janet Lintala talks with Kara Lofton about her new book The Un-Prescription for Autism: A Natural Approach for a Calmer, Happier, and More Focused Child. The book outlines organizational and coping techniques for caregivers and parents and provides suggestions for addressing some of the co-morbid conditions autistic kids struggle with. In the interview, Lintala and Lofton also talk about the work Lintala does at her clinic Autism Health! in Beckley, including discussing the probiotic and enzyme regimen she has developed and the clinic's hyperbolic oxygen chamber.
“All we can do is give him some therapies, and try to help him regain his speech or whatever physical problems he might be having and try to ease his symptoms, but you’re never going to cure him,” says Lindsay.
In a follow up email I asked Tom why they didn’t take Ricky to a gastrointestinal specialist. Tom said they didn’t realize that gastrointestinal issues were such a huge problem. “One, the child doesn’t communicate well, so we never knew that he was in pain…Two, we didn’t realize that his bowel movements were as erratic as they were. In hindsight, it’s evident, but when you are dealing with so many other problems all at the same time, it’s hard to pick up on something that is seemingly not connected to anything that is on your radar. When he is physically assaulting his teachers, the last thing you look at is stomach discomfort.”
It’s worth noting that Lintala is supportive of Applied Behavior Analysis therapy, saying that what she does is low-risk and is aimed at different goals than the ABA’s. ABA therapists like McLaury are more critical of Lintala – urging patients to consider their resources and time carefully when deciding which therapies to pursue.
The Risers clearly feel well served by Lintala’s clinic. They say that they notice huge regressions during periods they are not able to afford the enzymes (which cost around 40 dollars a bottle and last about a month). Despite improvements, they continue to hope for more therapy in general, which they think is most likely to come through the state intellectual and developmental disabilities waiver program.
State Waiver Program Offers Relief to Some Families
Credit Kara Lofton / WVPB
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WVPB
The Autism Services Center in Huntington also has a limited number of residential spots in group homes for adults with severe disabilities. It’s an expensive program to run – costing close to $10,000 a month per resident – but provides a high quality of life to individuals who would otherwise be institutionalized.
The waiver is awarded to children in West Virginia who have a documented intellectual and/or developmental disability. Currently 4,634 people are on the waiver – the maximum allowed – and more than 1,000 are on the wait list. The average time between when a person is approved for the IDD waiver program and receives a slot is a little over three years.
“If these children need this waiver and need the support, then where is the immediacy?” says Tom Riser. “Because right now my child is behind; he grows more behind every day. If this is an early intervention – something that is only remedied by early intervention – where is the immediacy on the waiver? Why is it taking three years? Three years to get my child into this program!.”
The waiver provides a plethora of services for families, including direct care services, day services, respite services and behavior management services. Yet state budget cuts may put the waiver in jeopardy.
In the meantime Ricky is in the special education track of third grade. Sometimes, his parents admit, they wonder if his classes are just “glorified babysitting.” The therapy he receives through school just doesn’t seem to be enough.
Where is Hope?
So you might be wondering, what happens when a child does get the services they need? Well, they might look like Hope.
Credit Kara Lofton / WVPB
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WVPB
Hope Crichigno smiles at her mother Sarah through the door of the therapy room at the intensive Autism Delivery Clinic in Morgantown.
During a recent visit, eleven-year-old Hope smiled at her mother through the door of the treatment room. She is one of the first children Susannah Poe accepted into the intensive Autism Delivery Clinic in Morgantown. Hope was then 5 years old.
“When she started here she was not potty-trained, she would not eat, she still had a gastrostomy feeding tube in her stomach,” says Sarah Crichigno, Hope’s mother.
Her family had been to feeding and swallowing clinics, and had tried to get help through Birth to Three. At age five, she only had about 100 words.
“Since coming here Hopi has transformed into this really blossoming little girl. Who is opinionated, she acts like she runs the show,” says Crichigno.
At the clinic, Hope and some of the other children are beginning to eat lunch. She is smiling, laughing and posing for pictures. She makes eye contact, is eating, is potty-trained and is able to verbally able to ask for what she wants and tell you how she feels.
“And that is huge as a parent!” says Crichigno. “When you think of trying to care for a child who can’t tell you what hurts or can’t tell you what they want other than through some non-verbal gestures, and then going to then a child who can tell you ‘I want some chocolate please, and my head hurts,’ it makes a difference, it really does.”
Hope’s story is, well, hopeful. It’s a success story of what can happen when severely autistic kids get the early, intensive services they need.
But remember those statistics Susannah Poe talked about at the very beginning of this story? Only 2 percent of autistic kids in West Virginia are receiving these early intensive services. For the other 98 percent like Ricky Riser, the question remains: What about me?
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation.
The prevalence of autism spectrum disorder (ASD) seems to have reached a plateau, with as many children affected by ASD in the United States today as two years ago, when the Centers for Disease Control and Prevention last reported on the subject. No West Virginia specific data is available.
The Centers for Disease Control and Prevention estimate that 1 in 68 school-aged children has ASD in the United States, according to a report published yesterday in the Morbidity and Mortality Weekly Report Surveillance Summary.
Boys are more than four times as likely as girls to have autism. Non-Hispanic white children are more likely to have the disorder than black and Hispanic children. However, this may be because black and Hispanic children receive developmental evaluations later than white children, noted the report. Overall, less than half (43 percent) of children identified with ASD receive developmental evaluations by age 3, the recommended age.
The CDC tracks autism prevalence among 8-year-olds in a sampling of communities in 11 states: Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin. No agency is currently tracking autism prevalence in central Appalachia. There was variation in the autism rates among the 11 sample communities, but this may be because the sites varied in the way they collected data – some states, such as New Jersey, reviewed both education and health records while others, such as Maryland, only reviewed health records.
The 2016 report represents data from 2012; the 2014 report represented data from 2010. In a press release earlier this week, experts caution that it’s “too soon to say whether autism prevalence is stabilizing,” but that the CDC will continue monitoring ASD.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation.
