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My Yellow Brick Road: A Journey Through a New Diagnosis

The Wizard of Oz has always been one of my favorite movies, but watching it this time, something seemed different and oddly familiar. As a parent of a child on the autism spectrum, I saw the movie through different glasses. We all know the story. Dorothy spins and twirls as her whole world is picked up by a tornado and she lands in a different place. An autism diagnosis can feel like a whirlwind, landing in a different world too. What now? How do I get back to the world that I know and feels comfortable to me? Even though we don’t have a bright, clear path to follow as she did, we can learn from Dorothy and her journey.

Acknowledge your feelings. Receiving an autism diagnosis can feel like a whirlwind that knocks your feet out from under you. All families experience grief, fear, frustration, and denial. Extended family members do, too. It’s important to remember this and support each other through these different stages. It’s okay to acknowledge that everything is not okay. The important thing is to not stay there. Pick yourself up. Lean on friends and family for support. Take time to do whatever relaxes you – to exercise, read books for fun, or have dates with your spouse or friends. Seeing a counselor for yourself can also help you work out some of the new anxieties and frustrations that you’re facing. Being your best will ultimately be best for your family, too.

Figure out where you are. Learn more about this new world where you’ve landed. What is autism? What does an autism diagnosis teach me about my child? A great place to start is on the newly diagnosed page of the Autism Society of North Carolina website. Another great resource is the workshop After the Diagnosis: Get Answers, Get Help, and Get Going. This is a workshop we offer at several locations across the state each month at no cost to families and as a webinar online. To see when this workshop is offered near you, as well as other workshops we offer, check out our workshops webpage.

Take the first step. There isn’t a yellow brick road, but there are resources to help figure out the right path for you and your family. For children younger than 3, the NC Early Intervention program is a great place to start. They can help you identify your child’s needs and find therapies to address those needs. For children 3-21 years old, your local school system is there to help you meet their educational needs. Contact your local school system to begin the referral process and evaluations to determine eligibility and create an action plan.

Call your “Glenda.” Do you wish you had a “Glenda” to call when you are unsure? You do! There are many of us across the state called Autism Resource Specialists. We’re parents with children on the spectrum available to help answer your questions and share resources. We don’t have a magic wand, but we help equip you with tools to advocate for your child and find your own way. To find your local Autism Resource Specialist, see our website.

Find others on the same journey. Dorothy’s journey would have been completely different if she had been without her kindred companions. By meeting others on the same path, she gained friendship, confidence, and joy in the journey. It is important for us to find our own tribe who understands the world of therapies, meltdowns, love, and acceptance. You may feel isolated or like others don’t understand, but with 1 in 59 children in NC having an autism diagnosis, many others in your community are facing similar struggles. You find those families by starting conversations with a mom in the therapist’s waiting room, by inviting a mom in your child’s preschool class to coffee, and by attending a local ASNC chapter meeting. Chapters provide a place for families on similar journeys to meet, learn together, and share experiences. Find your local chapter here.

Look to others for advice, but you have the answers. There is no “wizard” who has all of the answers. It’s all an illusion. While it is important to look to professionals to gather more information, never underestimate your contribution to the team. You know your child best. You know how to read between the lines to know what he or she needs when he can’t express it himself. You know strategies that have worked – and what hasn’t worked. You also have your own wishes and vision for his or her life. Feel comfortable expressing your thoughts and wishes to help your child grow to his or her potential. You are your child’s best advocate!

Don’t forget, there’s no place like home! This is the most important. It may feel like a whirlwind now with a lot going on, but don’t forget to enjoy your child! Accept and appreciate your child for the blessing he or she is. Embrace the funny, sweet moments that melt your heart. Build on your child’s interests to turn them into family memories. If your child likes to dance, have family dance parties. If your child likes bowling, go do it. If it’s finger painting, dinosaurs, or spinning hula hoops, find a way to do it together.

You may not have a yellow brick road, but you do have a road map, resources, and friends along the way. Wherever you are in your journey, I hope you’re encouraged in knowing that you’re not alone and that the Autism Society of North Carolina is here to help.

Kristi Ford, an ASNC Autism Resource Specialist in the Triangle and mom to a son with autism, can be reached at kford@autismsociety-nc.org.

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