An Autism Diagnosis Survival Guide

Expert advice for families, from parents who have been there


Published:

Photo courtesy of christa harder

Christa Harder of Charlotte with her three children, two of whom have autism. Her 7-year-old son Nolan, left, was diagnosed in 2013 when Harder was pregnant with now 5-year-old twins Neil and Nora, center and right. Neil was diagnosed with autism two years later. 

Seven-year-old Nolan Harder of Charlotte was always a little different. As a toddler, he would lick the carpet and walls. He’d bang his head on doors. He didn’t speak until well after his peers.

And yet, when Nolan was diagnosed with autism at age 2, his mother Christa says the news still felt staggering.

 “The beginning is awful for anybody,” Harder says. “I felt very alone. People kept saying, he’s just a kid, he’ll grow out of it. But he didn’t. It was like, is my child ever going to talk? Is he ever going to have friends?”

Harder’s experience is common. According to experts at the Autism Society of North Carolina, many parents feel overwhelmed, alone and anxious about the future during the first months after their child is diagnosed with autism.

“It’s like you’re running a gauntlet on a daily basis and it wears you down physically and emotionally,” says David Laxton, director of communications for the Autism Society of North Carolina. “Each person’s experience is different, but you don’t have to feel like you have to figure it out on your own.”

To help, we’ve compiled a few tips.

1. Get a medical diagnosis. A medical diagnosis is critical, says Jill Lorenzi, a medical instructor at the Duke Center for Autism and Brain Development. Not only will a diagnosis pinpoint your child’s needs, but without it, it may be difficult to access many of the services that will help your child most. “We know that individuals with autism learn differently, so focused help for the child’s needs are important,” Lorenzi says.

A comprehensive assessment includes a thorough evaluation of the child’s strengths and weaknesses, as well as screenings for additional medical conditions.

2. Take a breath. “I would say, the first step is to take a deep breath and recognize the freedom that comes with a diagnosis,” says Sara Passey, Apex mother of 12-year-old Max, who has autism. “I know that sounds strange, but when you know what it is, you have an idea of where to go. Getting a diagnosis lets you say, OK. This is a new adventure. Let’s go.”

It’s important to remember that your child is the same individual he or she was before being diagnosed, Laxton advises. Your child will continue to grow and develop, even if it’s at a different pace than his or her peers.

“It is not something that is the end of the world, but you have to pace yourself,” Laxton says. “It’s not a sprint. It’s a marathon.”

3. Start with evidence-based research. “You could spend all day and all night for years and not be able to scratch the surface of what’s out there (regarding autism advice),” Lorenzi says. “When you’re trying to find a few things that will work, it’s quicker to narrow down to evidence-based resources first. Anchor yourself to an organization like Autism Speaks or the Duke Center for Autism (and Brain Development).”

4. Reach out. Remember, you are not alone. Reaching out to other autism parents can be enormously beneficial, says Brenda Candland of Holly Springs, whose son, Franklin, has autism.  

“Find other parents who have children with autism,” she says. “You’re not alone. Even though all autistic children are different, you all share a common goal: You love your child and want what’s best for your child.”

Laxton suggests finding a social media support group for tips and moral support, or connecting with the Autism Society of North Carolina, which offers workshops for parents and grandparents of the newly diagnosed throughout the year.

“Just being able to talk to somebody — to share what your fears are, your questions — having somebody you can talk to who’s been down that path is so much better than googling all night long,” he says.

Photos courtesy of Sara Passey

 Max Passey, 12, was diagnosed with autism when he was almost 2 years old. His mother Sara, also pictured, encourages self-care and celebrating every small victory. 

5. Take care of yourself. Many autism parents say it’s hard for them to find the right way to include self-care in their everyday lives. Some autistic individuals rarely sleep. Others become violently upset by anyone new, making finding a babysitter a distinct challenge.

The idea of “taking some time for yourself” can seem laughably unrealistic, Passey says, but it’s important to try.

“That kid needs you to be your best, and you can only do that if you’re taking care of yourself,” she says. “You don’t have to be removed from the situation. You don’t have to go anywhere. You just have to find something that fills you and give yourself permission to do it.”

Self-care could mean meditating for five minutes, taking the time to eat well, exercising, or writing a quick journal entry. Laxton says he knew one parent who recommended using a paper shredder for stress relief.

“You have to figure out what you can do so that you can be the best parent for your child,” Laxton says.

6. Have hope. “It’s not always doom and gloom,” Harder says. “It might feel that way initially, but it gets better. It’s still hard, and it isn’t fun to see your child struggle, but you figure out how to work around things. You’ll adapt. It does get easier.”

While an autistic child’s developmental process will be different from a neurotypical child’s, she will continue to develop.

“Continue to hope and dream for your child,” Lorenzi says. “You might have to tweak your goals or think about them a little bit differently, but there are so many strengths to be utilized and so many great things about people with autism.”

7. Trust yourself. Since every child with autism is different, you are your child’s best advocate. Your child will respond to some settings or therapies better than others. Trust yourself to know what makes the most sense for you and your child to try.

For Bridget Palys and her daughters Emma and Lily, who both have autism, the online classrooms of North Carolina Virtual Academy made more sense for them than a traditional school.

“With online school, they learn in a comfortable atmosphere where they both absorb their lessons without the distractions they experienced in the traditional school setting,” Palys says.

8. Identify resources. As autism awareness has grown, so have the resources available to families. Find out what’s available in your area, including autism specialists, autism-friendly summer camps, workshops and other information, by visiting autismspeaks.org or autismsociety-nc.org.

Autumn Linford works as a freelance journalist in and around the Triangle. She has a master’s degree in journalism and is the mother of three children, including a son with autism. 

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February 2019

The Flying Biscuit Café celebrates National Pancake Month by bringing back its Red Velvet Pancakes. The delicious red velvet pancakes, complete with hand-made cream cheese...

Cost: Dine-in purchase required

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Flying Biscuit - Raleigh
2016 Clark Ave.
Raleigh, NC  27605
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Share your artistic creations by entering the park’s annual community art and photography contests. Contest rules will be posted in January 2019. The contests include youth and adult categories...

Cost: Free

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Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh , NC  27603
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Cost: Free

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Mountains-to-Sea Trail
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Durham and Raleigh, NC  28445
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Sponsor: Friends of the Mountains-to-Sea Trail
Contact Name: Court Pernell
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Cost: Free

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NC State Fairgrounds
1025 Blue Ridge Rd.
Raleigh, NC  27607
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Join Mindful Families of Durham, a Buddhist-inspired spiritual community that supports area parents, caregivers, and their children in the practice of mindfulness and the understanding of the...

Cost: Free

Where:
Erwin Road
Durham, NC  27705
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Sponsor: Mindful Families of Durham
Contact Name: Adam, Laura, Josh, Sumi
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Cost: $13.50/person

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Spring Haven Farm
5306 Homer Ruffin Rd.
Chapel Hill, NC  27516
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Sponsor: Spring Haven Farm
Telephone: 919-407-1806
Contact Name: Andrew
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Corteo, which means cortege in Italian, is a joyous procession, a festive parade imagined by a clown. The show brings together the passion of the actor with the grace and power of the acrobat to...

Cost: $39 and up

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PNC Arena
1400 Edwards Mill Rd.
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Cost: Free

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Sponsor: Hillsborough Main Library
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Cost: $15 per child for 1 pillow

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Holly Springs, NC  27540
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Sponsor: Carolina Children's Museum
Contact Name: Kirsten Pierce
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Did you give a valentine to Mother Nature this year? Join us as we celebrate a day of love and kindness at the park! Make a few homemade valentine presents for our feathered friends including a...

Cost: Free

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Where:
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5 E. Edenton St.
Raleigh, NC  27601
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Ages 2-5 enjoy movement and mindfulness. Learn basic yoga elements through age-appropriate breath-work techniques, games, storytelling, and creative visualization.

Cost: $15 or use your package/membership

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184 East St.
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Cost: $15 or use class pass/membership

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Kids Mindful Movement - Pittsboro
184 East St.
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Cost: Free

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The Flying Biscuit Café celebrates National Pancake Month by bringing back its Red Velvet Pancakes. The delicious red velvet pancakes, complete with hand-made cream cheese...

Cost: Dine-in purchase required

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2016 Clark Ave.
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Website »

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Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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More information

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Cost: $15/child, use your package/membership.

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Sponsor: Raleigh Parks, Recreation and Cultural Resources Department
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Raleigh, NC  27605
View map »


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Cost: Free

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Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »

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Cost: $15 or use class pass/membership

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Cost: Free

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1400 Aviation Pkwy.
Morrisville, NC  27560
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Sponsor: Lake Crabtree County Park
Telephone: 191-946-03355
Contact Name: Carol Cunningham
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Cost: $3; no fee for accompanying adult

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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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Cost: Free

Where:
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2623 Sanderford Rd.
Raleigh, NC  27610
View map »


Sponsor: Raleigh Parks, Recreation and Cultural Resources Department
Telephone: 919-831-1898
Contact Name: Adam Sproles
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The Flying Biscuit Café celebrates National Pancake Month by bringing back its Red Velvet Pancakes. The delicious red velvet pancakes, complete with hand-made cream cheese...

Cost: Dine-in purchase required

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2016 Clark Ave.
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View map »


Website »

More information

The Flying Biscuit Cafe (www.flyingbiscuit.com) is throwing a Love Cake Party for Valentine's Day on Thursday, February 14. Dine in and receive a complementary Love Cake appetizer for...

Cost: Free for Love Cake; dine-in purchase required

Where:
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Cost: Free

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Ages 1-5 and caregiver delight in the discoveries of nature. Register online. Choose course #121597.

Cost: $8/resident, $10/nonresident

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Cost: Free

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Cost: Free

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This after-school class for kids in grades 3-5 offers fun learning yoga poses and mindfulness techniques to reduce stress. Grades 3-5. 

Cost: $15/class, or use your class pass/membership.

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781 Mt. Carmel Church Rd.
Chapel Hill, NC  27517
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Website »

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Mix your way to some sweet-smelling at-home treatments while learning the science behind the fizz!

Cost: Free

Where:
Orange County Public Library
137 W Margaret Lane
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Sponsor: Orange County Public Library
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Contact Name: Libbie Hough
Website »

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Show More...
Show Less...

The Flying Biscuit Café celebrates National Pancake Month by bringing back its Red Velvet Pancakes. The delicious red velvet pancakes, complete with hand-made cream cheese...

Cost: Dine-in purchase required

Where:
Flying Biscuit - Raleigh
2016 Clark Ave.
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View map »


Website »

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Observe and count the variety of birds that can be found along the trail as we walk to the Beaver Creek Bridge. Ages 6 and older. Meet at the New Hill parking area (1309 New Hill-Olive Chapel Rd.,...

Cost: Free

Where:
American Tobacco Trail
1309 New Hill-Olive Chapel Rd.
Apex, NC  27502
View map »


Sponsor: Harris Lake County Park and the American Tobacco Trail
Telephone: 919-387-2117
Contact Name: Joanne St. Clair
Website »

More information

Come by the park center any time during the four days of the Great Backyard Bird Count to view a free slideshow of the birds of Yates Mill Pond. Over 150 photographs of birds are featured in the...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
View map »

More information

Join park staff in collecting data for the 22nd annual Great Backyard Bird Count. We will look and listen for birds in a variety of habitats, and keep track of how many individuals of each species...

Cost: Free

Where:
Lake Crabtree County Park
1400 Aviation Pkwy.
Morrisville, NC  27560
View map »


Sponsor: Lake Crabtree County Park
Telephone: 191-946-03355
Contact Name: Carol Cunningham
Website »

More information

Learn about local birds and contribute to a global database of bird populations at the North Carolina kickoff of the 22nd Great Backyard Bird Count. First Lady of North Carolina Kristin Cooper and...

Cost: Free

Where:
Dorothea Dix Park
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Raleigh, NC  27603
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Using fun activities, discover tips and techniques to identify birds in the rewarding hobby of bird watching. Learn how to participate in the bird count and hike along the shoreline to practice...

Cost: Free

Where:
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2112 County Park Dr.
New Hill, NC  27562
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Sponsor: Harris Lake County Park
Telephone: 919-387-4342
Contact Name: Joanne St. Clair
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Kids spend a night out in nature making memories and new friends in an old-fashioned, camp-style program. Ages 8-12. Register online. Choose course #121592.

Cost: $15/resident, $19/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Raleigh, NC
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Telephone: 919-387-5980
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More information

Enjoy fun, games, friendship and more every Friday.

Cost: Free

Where:
Sanderford Road Center
2623 Sanderford Rd.
Raleigh, NC  27610
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Sponsor: Raleigh Parks, Recreation and Cultural Resources Department
Telephone: 919-831-1898
Contact Name: Adam Sproles
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Cost: $25

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Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
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The Flying Biscuit Café celebrates National Pancake Month by bringing back its Red Velvet Pancakes. The delicious red velvet pancakes, complete with hand-made cream cheese...

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Cost: Free

Where:
Historic Yates Mill County Park
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Celebrate all things cats at the Tica Time Cat Show. Watch judging, learn about the different cat breeds, interact with the breeders and exhibitors, cheer on favorite cats, shop...

Cost: $5.00 adults; discounts for children and families

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Hillsborough Visitors Center
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Sponsor: Alliance for Historic Hillsborough
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Sponsor: City of Raleigh Parks, Recreation and Cultural Resources
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Contact Name: Wilkerson staff
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Cost: 0

Where:
Orange County Public Library
137 W Margaret Lane
Hillsborough, NC  27278
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Sponsor: Orange County Public Library
Telephone: 191-924-52539
Contact Name: Libbie Hough
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Jeff Boyer takes bubbles to the max in this one—man bubble extravaganza! It’s the craziest, most creative bubble show around. Jeff juggles bubbles, sculpts and builds with bubbles, and...

Cost: Adults: $27, Seniors (55+): $25, Family & Friends 4-pack: $92

Where:
Cary Arts Center
101 Dry Ave
Cary, NC  27511
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Join a park naturalist on a one-mile hike around Crowder Pond and help to identify and count the birds that we see along the way. Learn how to identify backyard birds by sight, sound, and other...

Cost: Free

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
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Discover what's happening as the sun sets and listen to stories around a campfire. All ages with adult. Register online. Choose course #121590.

Cost: $18/resident, $24/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
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Telephone: 919-387-5980
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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.