Danielle Howell Abbott lives in Statesville with her family: her husband, daughter, son and former Mr. Biggles. According to his son, Eli, Mr. Biggles was a pirate who called Eli’s bedroom walls when he was a toddler.
As the young children let their imaginations run wild, it didn’t seem ominous to Abbott – have you ever watched DW’s imaginary friend Nadine in ‘Arthur’? In fact, Abbott chuckled as she remembered the imaginary friend she had let stay in her son’s room. But other behaviors surfaced later, causing Abbott to take a step back and nod his head.
“Something was never quite right,” Abbott said. “He fed in a group and when he was about four months old he never slept at daycare. As soon as we got home and I put him on my chest he was out.
These were not just developmental abnormalities; Eli’s quirky behavior stayed with him as he grew up, causing trouble outside the home.
“At school, we knew things were bad,” Abbott said. “Teachers sent him out of his classrooms because he was disruptive.”
Abbott and her husband raised their concerns with Eli’s pediatrician. Looking back, it’s as if he was being treated for the symptoms of autism – anxiety, depression and behavioral problems – rather than doctors intervening at the root of the problem itself – requiring an official diagnosis. His doctor prescribed him an antidepressant, which helped him immensely to feel more confident and less like an outcast at school, his mother said. However, something was still wrong, which led Abbott to bring Eli to the Treatment and Education for Children with Autism and Communication Disabilities (TEACCH) program at UNC-Chapel Hill for an evaluation.
“We had to wait 18 months,” Abbott said. “At the time, [the school] didn’t give him any IEP (Individualized Education Program) services since he didn’t have the official diagnosis, yet he still had all the symptoms and behaviors. He was getting speech therapy at school, but in the meantime, I was doing everything I could to make sure something happened for him.
According to Dr. Sarah Edmunds, clinical psychologist and assistant professor at the University of South Carolina, however, there is a dissonance between the two.
“In many states, there is a difference between a medical diagnosis of autism and an educational classification of autism,” Edmunds said. “And so an educational classification of autism is absolutely sufficient to get services in school, but most parents seek a medical diagnosis of autism because it gives broader access to services – it unlocks health coverage. insurance, including Medicaid insurance coverage for out-of-school therapies like speech therapy, OT (Occupational Therapy), and ABA (Applied Behavior Analysis).
For Eli, this medical diagnosis was crucial in obtaining certain therapies through school that would otherwise have been direct expenses for his parents. According to Edmunds, at the heart of this problem is a lack of resources; in particular, specialists trained in autism assessments, leaving many children to suffer in the same way Eli did.
“Some school psychologists and other mental health professionals in schools who would do an IEP assessment to come up with this autism classification are so stretched,” Edmunds said. “There are not enough school psychologists or professionals in the district.”
This lack of resources proved true for Erin Surbaugh-Jones and her son Jackson, now 13, as they tried to get the proper help he needed within the public school system. Elizabeth City-Pasquotank.
There is no cookie-cutter presentation of autism in children, hence its identification as a spectrum, with behaviors and abilities varying on a case-by-case basis. Surbaugh-Jones detected signs in Jackson that behaved very differently from those Abbott recognized in Eli. According to Surbaugh-Jones, Jackson had no interest in playing with children his own age; rather, he wanted to be with adults in social settings. He used to clap his hands. When he becomes anxious, he will repeatedly do things in increments of three for hours — either behaviorally or verbally — as a coping mechanism, according to Surbaugh-Jones.
While it was clear at home that Jackson was intellectually gifted but had behavioral issues, at school it was not so evident and eventually led to his parents removing him.
“‘He’s too smart for an IEP, he doesn’t need one,'” Surbaugh-Jones said, repeating the school’s cavalier response to her request for accommodation for her son.
For Jackson, it was the behavioral aspect of his diagnosis that affected his ability to act appropriately in the classroom, rather than an explicit academic shortcoming. He was repeatedly bullied for his intellectual talents, starting in kindergarten when he was pushed down a flight of stairs at school, his mother said. Similar scenes unfolded later, when he was kicked in the head and later beaten.
For Edmunds, it was clear to Surbaugh-Jones that not only were there not enough people to defend Jackson, but the resources given to him were dismal. While he would have received essential therapies if he was still attending public school, as Surbaugh-Jones now teaches at home, other therapies outside of what the government deems necessary become a privilege to be had. . In order to get occupational therapy services such as help with their balance and handwriting — another behavioral aspect that Surbaugh-Jones said the school had canceled — they would have to travel more than two hours by car to to Raleigh for these services and pay for them. in the pocket.
When schools fail to provide children on the spectrum with adequate resources, families and their wallets are directly affected. The situation turned out to be so dire that it forced John Stefano, whose son has autism, to leave the state.
“In North Carolina, we paid for his ABA therapy out of pocket, and we spent $2,000 to $3,000 a month just for that,” Stefano said. “I was begging (my wife) to go back to work – she’s a registered nurse – at a company I knew she was covered for. We just determined that it was better for everyone to leave the state for a state that had access to better resources.
In Colorado, Stefano and his wife have found more accessible resources for their son, such as Medicaid waiver programs where Stefano’s income does not disqualify him from receiving help.
The common denominator at every level, from Stefano to Abbott, is that the government has yet to acknowledge, let alone hear, the issues these families face.
Doug Brown, a father of two in Guilford County with one child on the spectrum, says there is a disconnect.
“I think the misconception in Washington is that if you go over that arbitrary threshold, you can afford it,” Brown said of bearing autism costs.
President Joe Biden’s Build Back Better plan, aimed at giving more resources to struggling American families, is currently on the hot seat in Washington. Although the proposed plan includes buzzwords and phrases like “children”, “caregivers” and “working families”, in its current form it does not address those in more unique positions, such as families with children with developmental disabilities. What does a free and universal kindergarten mean for a child who also needs speech therapy? is it included?
The need is felt among families in North Carolina and, no doubt, across the country. The pressure, however, is not felt among those in Washington.
Mr. Biggles no longer lives in Eli’s closet, but the believable atypical development trail for his creation is still alive and well within Eli – but only a figment of the state’s imagination.