CHAPEL HILL, N.C. — Danielle Howell Abbott lives in Statesville, North Carolina with her husband, daughter, son and, for a time, Mr. Biggles. When he was a toddler, her son Eli said Mr.Biggles was a pirate who lived in the walls of his bedroom.

Young children let their imaginations run wild, so this didn’t strike Abbott as concerning; Arthur’s younger sister D.W. had an imaginary friend too for that matter. Abbott still giggles about it now, more than a decade later. But Eli started showing other behaviors later that gave Abbott reason to pause.

“Something was never quite right,” said Abbott. He cluster fed and had trouble sleeping at daycare, but would pass out on her as soon as he got home, said Abbott. As he got older, Eli caused trouble outside of the house.

“At school we knew things were bad,” said Abbott. “The teachers were sending him outside of his classrooms because he was disruptive.”

Abbott and her husband brought their concerns to Eli’s pediatrician when he started elementary school. He was treated for everything surrounding his behavioral challenges like anxiety and depression, but lacked an autism diagnosis to help guide him. His doctor prescribed him an antidepressant, which helped his confidence and made him feel less like an outcast at school, said his mother. However, Abbott knew there was more to it and she believed her child was on the spectrum. This led her to seek an evaluation at UNC-Chapel Hill’s Treatment and Education of Autistic and related Communications Handicapped Children program (TEACCH).

It took 18 months to get an appointment.

“At the time, [the school] didn’t give him any I.E.P. (Individualized Education Program) services since he didn’t have the official diagnosis, but yet he still had all the symptoms and all the behaviors. He was getting speech services through school, but in the meantime I was doing whatever I could to get something going for him.”

Sarah Edmunds, a clinical psychologist at the University of South Carolina, however, said many parents struggle to get all the paperwork necessary for both a medical diagnosis of autism and the educational classification needed to get services in school. .

“Most parents seek a medical diagnosis of autism because it gives more pervasive service access,” said Edmunds. “ It unlocks insurance coverage, including Medicaid insurance coverage for therapies outside of school like speech, OT and ABA.”

For Eli, this medical diagnosis was crucial in order to gain certain therapies through school that otherwise would have been out-of-pocket costs for his parents. According to Edmunds, at the core of this problem is a lack of resources; particularly, specialists who are trained in autism evaluations, leaving many children to suffer in the same way Eli did.

“Some school psychologists and other mental health professionals in the schools that would be doing an I.E.P. evaluation to arrive at that classification of autism are so stretched thin,” said Edmunds. There are not enough school psychologists or professionals in the district.”

Erin Surbaugh-Jones and her now 13-year-old son, Noah, also experienced this as they tried to get the proper assistance he needed within the Elizabeth City-Pasquotank Public Schools system.

There is no cookie cutter presentation of autism in children, hence its identification as a spectrum, with behaviors and capabilities varying on a case-by-case basis. Surbaugh-Jones detected signs in Noah that fared far differently from those Abbott recognized in Eli.

Surbaugh-Jones said Noah had no interest in playing with children his age and just wanted to hang out with the adults in social settings. He used to flap his hands. When he gets anxious, he’ll do things repeatedly in increments of threes for hours – whether it’s behaviorally or verbally – as a coping mechanism.

While it was clear on the home front that Noah was intellectually gifted but behaviorally challenged, at school this wasn’t as obvious and ultimately led his parents to pull him out.

“‘He’s too smart for an I.E.P., he doesn’t need it,’” said Surbaugh-Jones, repeating the school’s cavalier response to her accommodation request for her son.

For Noah, 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 bullied on multiple occasions, starting as early as kindergarten when he was pushed down a staircase at school, for his intellectual talents, said his mother. Similar scenes played out later, when he was kicked in the head and later beaten up.

Surbaugh-Jones felt like not enough people were advocating for Noah, and that the resources afforded to him were not enough. While he would have been provided essential therapies if he still attended public school, as Surbaugh-Jones now homeschools him, other therapies outside of what the government regards as necessary become a privilege to get. In order to get occupational therapy services such as help with his balance and hand-writing – another behavioral aspect Surbaugh-Jones said the school wrote off – they would have to travel more than two hours by car to Raleigh for these services, and pay for them out-of-pocket.

When schools fall short of providing children on the spectrum with adequate resources, families and their wallets are directly affected. The situation has proven so dismal that it forced John Stefano, whose son has autism, out of the state.
 
“In North Carolina we paid out-of-pocket for his ABA therapy, and we spent $2,000 to $3,000 a month just on that,” said Stefano. “I was begging [my wife] to go back to work— she’s a registered nurse — at a company that I knew had coverage. We just determined it was better for everybody just to move out of state to 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 for receiving aid.

The common denominator across the board, from Stefano back to Abbott, is that the government has yet to acknowledge, let alone hear out, the problems at hand for these families.

Doug Brown, father of two in Guilford County with one child on the spectrum, says there’s a disconnect.

“I think the misconception in Washington is that if you make over this arbitrary threshold then you can afford it,” said Brown with regard to affording autism related costs.

President Biden’s Build Back Better Plan, aiming to extend more resources to struggling American families, is on the hot seat in Washington right now. While the plan’s proposal includes buzzwords and phrases like “children,” “caregiving” and “working families,” as it stands now, it does not address those in more unique positions, such as families having children with developmental impairments. What does free, universal preschool mean for a child who also needs speech therapy; is that included?

The need is felt amongst North Carolina families, and without question across the country. The pressure, however, falls short of being felt amongst those in Washington.
Mr. Biggles no longer lives in Eli’s closet, but the atypical development track credible for his creation is still alive and well within Eli — but only a figment of the
state’s imagination.