Understanding Autism Spectrum Disorder

A deeper understanding and more accepting view.


Published:

Thomas Jefferson. Albert Einstein. Isaac Newton. According to Charlotte-based psychologist Frank Gaskill, these creative, brainy leaders probably had Asperger’s Syndrome.

Gaskill produces the “Dr. G Aspie Show,” an online video series that covers a range of autism-related issues, and he has also written a graphic novel about a superhero with Asperger’s. Gaskill’s goal: Help individuals with Asperger’s feel comfortable with their identity. “Part of that,” he says, “is getting the message out to non-Aspies.”

Asperger’s, along with autism and certain developmental disabilities that can cause social, communication and behavioral challenges, are defined collectively as autism spectrum disorder. The spectrum is broad.

Thanks to therapists and doctors like Gaskill, as well as parents, teachers, advocates and adults with ASD, public awareness and understanding of this disorder has improved dramatically over the last few years. This means ASD is more likely to be recognized and diagnosed at an early age. It also means specialized treatment has become more accessible, and more time and money has been directed toward research into the causes, diagnosis and treatment of ASD.


Acceptance and Early Identification

Since 2000, the number of children diagnosed with ASD has risen from 1 in 150 to 1 in 68. In North Carolina, it’s 1 in 58. Over the course of his 30-year career, Dr. Kurt Klinepeter, chief of developmental and behavioral pediatrics at Wake Forest Baptist Medical Center in Winston-Salem, has seen firsthand the increase in diagnoses of children with ASD and the changing public perception.

“A diagnosis of autism used to be a surprise,” Klinepeter says. “Now families come in and bring it up on their own.” This increase may be the result of improved efforts at diagnosis, a broader definition of ASD and/or more children with ASD.

Before 2013, doctors made separate diagnoses for autism, Asperger’s, pervasive developmental disorder not otherwise specified and childhood disintegrative disorder. Today, in accordance with the fifth edition of the American Psychiatric Association’s diagnostic manual (DSM-5), these disorders are all diagnosed as Autism Spectrum Disorder in one of three levels of severity. Mild cases (level 1) are defined as “requiring support,” mid-spectrum cases (level 2) require “substantial support,” and the most severe cases (level 3) require “very substantial support.”

“Professionally speaking, it makes sense that these disorders are grouped together — the breadth of the DSM-5 definition helps doctors diagnose children at earlier ages, but the single definition is hard for lay people to understand,” Klinepeter says.

The DSM-4 terms were in place for 20 years, and many doctors and families still find the terms, such as Asperger’s, useful descriptors.


A Diagnosis of Difference

Klinepeter calls ASD “a diagnosis of difference.” Every child with ASD has unique symptoms and needs. Some children appear to have ASD, when what they actually have is attention deficit disorder or a learning disability. Some children grow out of their symptoms, other children grow into them. Autism experts suggest that parents not take the “wait-and-see” approach. Early intervention is valuable — the earlier the better.

“There’s nothing exclusive about behavioral therapy that couldn’t be helpful for any language/learning problem,” Klinepeter says.

In an effort to catch ASD early, the American Academy of Pediatrics recommends that every child be screened for developmental delays starting at his or her 9-month wellness visit. Even before that, parents should watch to make sure their child is meeting developmental milestones.

Symptoms can be spotted as early as 6 months and include concentrated interest in objects rather than people, less babbling than a typical infant, failure to respond when his or her name is called and decreased social smiling. At 12 months, a parent may see delayed gestures, delayed language and a failure to copy actions or sounds.

Older children and adults with ASD may have trouble with social, emotional and communication skills, and may display unusual behavioral tics, such as rocking and twirling, or self-abusive behavior such as biting or head-banging. Children with ASD tend to start speaking later than other children, though a high-functioning/high-IQ child (like the “Aspies” Gaskill referred to) might have good language skills by age 5, but use odd speech patterns, unusual accents and give monologues about a single topic without regard for the person listening.


Mentors and Support

A keystone of North Carolina’s autism community is the Autism Society of North Carolina, which provides a broad range of support services. What started as a small group of parents in the late ’60s is now a statewide organization with headquarters in Raleigh and offices in Asheville, Charlotte, Greensboro, Greenville and Fayetteville.

“We provide lifelong partnerships for families and individuals with autism,” says David Laxton, director of communications.

Highly cognitive children with ASD might require less intensive, though no less critical support. Gaskill has found that his patients — ages 4-18 — respond well to social skills groups. “They come to these groups and you can see them breathe a sigh of relief — I’m home,” he says.

Gaskill’s goal is for these kids to be comfortable with their identity, which often includes addressing the bullying or misunderstanding they receive at school.


Treatment Options

Some treatments require hours of behavioral therapy every week and involve some form of applied behavioral analysis. In the simplest terms, ABA-based models work to change behavior by encouraging positive behaviors and discouraging negative behaviors. Popular ABA treatments include the Early Start Denver Model for children younger than 18 months, a relationship-based approach known as “Floortime,” and the University of North Carolina TEACCH (Treatment and Education of Autistic and Communication-related Handicapped Children) program, which focuses on visual cues. Other treatments include occupational therapy, sensory therapy and speech therapy.

While there are no medications that cure ASD, some help with related symptoms. For example, some medications might help manage high energy levels, inability to focus, depression or seizures. Dietary treatments have also been developed, though they do not have the scientific support needed for widespread recommendation. An unproven treatment might help one child, but not another.


Educational Approach

There are also educational options. ABC of NC Child Development Center in Winston Salem, was originally conceived by a group of parents eager for services for their children with autism. The cohesive activism of that group is a hallmark of North Carolina’s autism community.

“These parents are wonderful,” says Selene Johnson, executive director of ABC of NC and a board certified behavior analyst who often goes to Raleigh with parents to lobby for various ASD issues, most recently for an autism insurance bill.

Cary mother of three Denise Sasseman chose to send her 6-year-old child, Oliver to The Mariposa School for Children With Autism in Cary. This nonprofit organization enrolls children ages 16 months through 16 years and attracts families from throughout North Carolina and beyond.

“We’re one of only a few schools offering one-on-one applied behavioral analysis,” says Jacinta Johnson, the school’s director. “We set goals for each student: for one it might be to enter preschool, for another it might be potty training. We define success specific to each child.”

For Sasseman and her son Oliver, success meant leaving The Mariposa School for Children With Autism to enroll full-time in public school. “We wouldn’t have considered it possible a couple years ago,” says Sasseman. “Oliver had no functional communication, and now he’s thriving in public school. He gained so many skills at Mariposa. It’s an amazing place.”

Oliver is now receiving special services at his public school, Oak Grove Elementary in Cary, and Sasseman has been pleasantly surprised.

“It is often considered best practice to include kids with ASD in regular classrooms,” says Leica Anzaldo, one of two lead therapists/trainers with the Autism Society. Anzaldo provides outreach and education to public schools throughout the state.

“We need to educate teachers and classmates about what it means to have ASD, and how they can help students with ASD learn and thrive.”

In addition to providing training for public schools, the Autism Society, Mariposa School for Children With Autism and similar organizations provide in-home training to individuals and families.

“ASD is a family condition,” Johnson says. “The entire family needs to understand their child’s treatment so they can provide a consistent learning environment at home.”


Cutting Edge ASD Research in North Carolina

North Carolina has several cutting-edge research centers exploring the causes and treatments of ASD, including the TEACCH center at the University of North Carolina, which specializes in community-based interventions; and the North Carolina Center for Autism and Developmental Disabilities Epidemiology, one of five national research centers funded by the Centers for Disease Control and Prevention.

The most recent addition is the Duke Center for Autism and Brain Development. The interdisciplinary clinical and research facility is led by Geraldine Dawson, former chief science officer for Autism Speaks, who developed and validated the Early Start Denver Model — the first comprehensive early intervention program for very young children with autism. She is also the author of several books on autism, including “An Early Start for your Child with Autism.”

“We are still learning so much about autism, from early brain development to the other end of the continuum, adults with autism,” Dawson says, noting that several hot topics being researched include genetic causes, environmental causes, drug treatments and gender differences (ASD is five times more common in boys than in girls, and experts are studying if this is because girls are underdiagnosed and/or if there are neurological differences).

“There is hope that in the next few years, some of the clinical trials going on now will translate genetic findings into drug targets,” Dawson says. A Duke study seeks to determine whether infusions of umbilical cord blood — either that of the children themselves, or someone else’s — can reduce core ASD symptoms. A second study is looking at the potential benefits of oxytocin, a hormone used anecdotally in smaller clinical trials. Dawson notes that the Duke Center would love to partner with families for their studies. They offer free diagnostic and clinical assessments for those interested in participating. To register to take part in research studies at Duke University, go to autismcenter.duke.edu/research/registry-autism-research.

Klinepeter suggests that parents who suspect their child might have symptoms of ASD get connected to services as early as possible. “There’s a parallel system/universe for children with developmental issues,” he says. “Inform yourself as much as possible. Understand that it’s a condition that responds to treatment. Be steadfast and push for your child.”

Sasseman believes it’s worth the effort.

“We’re so lucky,” says Sasseman, of her son Oliver. “He’s an amazing kid. He’s got a great temperament. He works so hard. And he’s happy — he wakes up every day filled with joy.”


Caitlin Wheeler is a freelance writer living in Durham.


See Also: NC Senate Bill Offers Relief for ASD Patients

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April 2019

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Cary Senior Center
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Raleigh, NC  27607
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4505 Mid Pines Rd.
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Cost: Free

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5229 Awls Haven Drive
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Cost: Free

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Sponsor: Raleigh Parks, Recreation and Cultural Resources Department
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Cost: Free

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500 W. Murray Ave.
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Cost: Free

Where:
Park West Village
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Cost: $28-$81

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Duke Energy Center for the Performing Arts
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Cost: Free

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See more than 1,500 cars, including hot rods, classic cars, custom cars, trucks through 1987 and others. Enjoy a demolition derby, kids activities and more.

Cost: $10-$22

Where:
North Carolina State Fairgrounds
1025 Blue Ridge Rd.
Raleigh, NC  27607
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Cost: $10-$22

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North Carolina State Fairgrounds
1025 Blue Ridge Rd.
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American Tobacco Campus
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Cost: Free

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BRITE Building at NC Central University
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Cost: Free to members / Included with admission

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Museum of Life and Science
433 W Murray Ave
Durham, NC  27704
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Technology Dr., off Hwy. 42 W.
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Cost: $3 per adult, $2 for ages 5 to 16 years, and under age 5 is free.

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Cost: $8/resident, $10/nonresident

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Enjoy a half-hour tour (starting at 1, 1:30, 2, 2:30 or 3 p.m.) to view the main power drive and milling machinery while exploring the mill's history and aspects of its preservation. All ages....

Cost: $5/Adult, $4/Senior (ages 60+), $3/Child (ages 7-16), Free/Child (6 - under)

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675
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An afternoon of accessible theater, music and dance featuring performers with and without disabilities. Enjoy performances by:  Diantha Lopez (Musician), Doug Kapp (Comedian), Eddie Cisneros...

Cost: $25/person

Where:
The Cary Theater
122 E. Chatham Street
Cary, NC  27511
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Sponsor: Arts Access
Telephone: 919-833-9919
Contact Name: Penny Arrowood
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Adults enjoy an evening gala to support Marble's Kids Museum.

Cost: $75/member, $95/nonmember

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh , NC  27601
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Enjoy free, live performances from the best artists from around the Triangle in front of Stone Theatre as well as kid-friendly activities. 

Cost: Free

Where:
Park West Village
Morrisville, NC  27560


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Enjoy a magical evening of dancing, crafting, stories and more. Dress as your favorite storybook character or dress in your royal best, and take a new look at the library after the doors close...

Cost: Free

Where:
Cameron Village Library
1930 Clark Ave.
Raleigh, NC  27605
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Walk with a park naturalist to look and listen for wildlife in the woods and fields as daylight transitions to night. Ages 4 and older; children must be accompanied by an adult. Trails are not...

Cost: $2

Where:
Wilkerson Nature Preserve
5229 Awls Haven Dr.
Raleigh, NC  27614
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Sponsor: City of Raleigh Parks, Recreation and Cultural Resources
Telephone: 919-996-6764
Contact Name: Wilkerson staff
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Relive the magic of your favorite wizard in Harry Potter and the Prisoner of Azkaban in Concert. Based on the third installment of J.K. Rowling’s classic saga, fans of all ages can now...

Cost: $28-$81

Where:
Duke Energy Center for the Performing Arts
2 E South St.
Raleigh, NC  27601
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Telephone: 919-996-8711
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Come experience the wonder of Japanese koi fish, a living art. Meet national experts and local hobbyists. Learn how to care for your pond and fish. Enjoy various raffles, auctions,...

Cost: Free

Where:
Raleigh Elks Lodge #735
5538 Lead Mine Rd
Raleigh, NC  27612
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Sponsor: ZNA Carolina
Telephone: 919-818-0289
Contact Name: Robin
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Learn basic canoeing skills and a bit about the millpond's history, then head out to explore the pond's many features as seen only from the water. Canoes, paddles, and life jackets are...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675
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Annual Guides

Education Guide

The 2018-19 Education Guide offers 678 education resources in the Triangle, including area preschools, private schools, public school systems, charter schools, boarding schools, academic resources and an Exceptional Child special section.

The Triangle Go-To Guide

Our Triangle Go-To Guide connects you to family fun resources across the Triangle. Plus, find out who our 2018 Readers' Favorites are.