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Autism Acceptance Month: A family’s experience with autism spectrum disorder

Amy and her family
Photo by: AMG Photography

Amy always knew she wanted to have a family and adopt children. Being adopted herself, she wanted to emulate the positive family experience that she had with her own family. When Amy met her husband, Shannon, she told him her dream to adopt and he agreed it was a great idea. “Right then, I knew he was the one,” said Amy.

Amy and Shannon got married and lived in Virginia when they started the adoption process.

“We were put through the ringer [with the process]. It was heartbreaking to get our hopes up that we were going to have a child to adopt, and then it would fall through multiple times,” said Amy.

But they did not give up on their dream.

One day, a social worker from the adoption agency called Amy and Shannon and forever changed their lives. At 18 months old, Marvin was ready to be adopted and join Amy and Shannon’s family. They were thrilled to finally make their dream come true.

Marvin had a trauma-based background prior to his adoption; he was born methamphetamine addicted, had shaken baby syndrome and experienced developmental delays. Amy said, “He just wouldn’t talk. We tried everything we could, but he still wouldn’t talk. He checked all the boxes for signs of autism.”

Autism spectrum disorder

Autism spectrum disorder (ASD) is a complex developmental disability that affect one’s social skills, behaviors, how they interact and learn. Individually, autism falls on a spectrum ranging from mild to severe. The Centers for Disease Control and Prevention (CDC) estimates about 1 in 44 children are diagnosed with autism.

Marvin saw occupational, physical and speech therapists in hopes to improve his developmental delays, but years went by without a formal medical diagnosis for autism.

In the meantime, Amy and Shannon adopted their second child, Cary Lynn. Cary Lynn was born with complex medical conditions, and Amy and Shannon partnered with a pediatric hospital in Virginia for her care. At 4 years old, Cary Lynn’s medical team suspected she showed signs of autism. She was the first to be diagnosed in their family. Amy also had Marvin evaluated, and he was diagnosed with autism and O’donnell-Luria-Rodan Syndrome (ODLURO), a neurodevelopmental disorder that causes delays in speech and is closely linked with autism.

Cary Lynn and Marvin
Photo by: AMG Photography

With that information, the couple felt overwhelmed. They had lots of questions and were referred to a diagnostic center for more evaluations. When testing was finished with Marvin, his care team asked that Amy come back to be evaluated for autism. She went through evaluations and was diagnosed with autism in her late 30s. Amy was not surprised to learn of her own autism diagnosis.

“As a kid, I remember feeling different from my friends and not fully understanding social cues,” said Amy. “I’d look to my friends and mimic their social cues like laughing at a funny scene in a movie.”

A move and introduction to Children’s Minnesota

In 2019, the family relocated to Minnesota because of Shannon’s job. “We were really nervous to move to Minnesota and leave our family and support system in Virginia,” said Amy.

The family worked with their providers in Virginia to ensure they had resources and services set up for Marvin and Cary Lynn as soon as they arrived in Minnesota. Within the first few weeks after their move, they were referred to Children’s Minnesota for Cary Lynn’s medical needs.

Shortly after settling into their new home, the COVID-19 pandemic hit and halted most of their family’s care. There was a lack of services across the board during the pandemic, and the loss of structure in school and the switch to virtual learning was especially challenging. Amy saw an uptick in behaviors from Marvin, and knew he needed support – so she contacted The Kid Experts™ at Children’s Minnesota.

Amy was referred to the developmental pediatrics program at Children’s Minnesota, where an expert team of specialists care for kids like Marvin who have autism.

Throughout their experiences at Children’s Minnesota, Amy is grateful for all of the care teams they work with. “I love working with Children’s Minnesota. The staff really listen to us as a family, and they’re attentive and autism-friendly in their approach,” said Amy.

Giving back to Children’s Minnesota

Today, Amy is an active volunteer and voice for autism awareness at Children’s Minnesota. She is involved in the Families as Partners program and Family Advisory Council to share her valuable perspectives. Amy is also a family advisor on the Children’s Minnesota Autism Steering Committee to share her insights with a team of medical professionals.

Celebrating Autism Acceptance Month

Each year, Autism Acceptance Month is recognized in April to celebrate and promote the need to accept, support, understand and empower people on the autism spectrum.

“If you’ve met one person with autism, you’ve met one person with autism,” said Amy. “We all have a unique experience and journey. There’s no right or wrong way to live with autism.” Their family is no different than yours in enjoying life and various activities. Amy’s family loves to go to the zoo, be outside, watch movies and take regular trips to Target.

If you are concerned that your child may show signs of autism, “My recommendation is to see your child’s primary care physician. An early diagnosis can be a world of difference in receiving resources and services right away,” said Amy.

Contact The Kid Experts

If you are concerned about your child’s developmental, behavioral, social or learning challenges, contact us.

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