Autism Doesn't End at 18: Discovering Independence and a Lifetime of Possibility

Janet and Bill Sullivan first noticed signs that something was different about their son Matt when he was 18 months old.

“I told the pediatrician that he wasn’t talking,” Janet said. She had recently seen an article in the paper about a girl who had displayed similar behaviors to Matt, like toe-walking and hand-flapping. “He told me to trust my instincts. So, we sought help.”

At 22 months, Matt was diagnosed with autism. “There wasn’t a lot of information available then,” said Bill. “There's still a shortage of services out there, especially at the adult level.”

Matt attended several different schools as a child, as his parents sought the districts with the best support services for autism. Then, when Matt graduated, it was time to find him an adult day program.

The change to his routine was initially challenging for him, so his parents decided therapy at LiveWell Counseling could help him adapt as well as grow and progress toward his independence goals as he entered adulthood. He and his therapist, Jennifer, connected quickly and formed an instant bond, which has helped Matt succeed in meeting many milestones.

One of Matt’s biggest struggles is expressing his emotions effectively and appropriately identifying emotions in others, which is a major part of what he and Jennifer work on together.

“Jennifer gets him to open up,” said Bill. “It’s been a huge benefit. We tend to get a little emotional with him because he’s our child, but she can talk to him more as a friend and help him advocate for himself. He often reacts with stress and anxiety rather than communicating his needs.”

“She’s given him extra coping skills, which really helps,” said Janet.

Jennifer’s support has also been instrumental in helping Matt be more expressive and share his interests with his family, such as his love for Thomas the Tank Engine. “One day, we were having dinner with Matt’s grandparents, and Matt suddenly started talking about Thomas,” said Janet. “At first, it felt out of place, but Jennifer helped us understand the importance of him participating in the conversation.”

Matt’s sensitivity to loud noises is another challenge his parents and Jennifer work with him to overcome, particularly his aversion to crying children. One day before leaving the house, Janet gently suggested Matt not bring his headphones. “I said, ‘Matt, I see no children. Maybe, you could do without them.’ And he did the whole day. He just needs to have new things introduced to him. We try to set him up for success.”

“We have goals for him, and they're much different than the goals we had for his three older brothers,” said Bill. “It’s a different journey. We want him to fit in, communicate his needs and fears, become as independent as possible, and just live the best life he can.”

Bill and Janet’s goal is not just to help Matt fit in with others but also to spread awareness so society fully understands and accepts people with developmental disabilities. “There’s still a stigma out there,” said Bill. “I would love for him to be 100% accepted for who he is. I think the world is moving in the right direction, which is a good thing.”

“I want to normalize him for everybody else,” said Janet. “When he was young, people would say, ‘Can I ask you a question?’ I’d say, ‘You can ask me anything.’ I want to teach others about him so they accept him. We have a long way to go, but it’s getting there.”

One of the biggest things Janet and Bill hope to see for Matt is finding meaningful work. Matt has shown an interest in computers and art (such as graphic design and building 3D models), two areas where his parents see his potential.

“We just need the right person to help him grow those skills,” said Janet. “He’s a fast learner and can accomplish a lot with a schedule or checklist. I feel confident that if it’s presented in the right way, he’ll be successful.”

“He’s a visual learner,” said Bill. “You don’t have to talk him through it – just show him. He’s wired differently.”

In spite of the struggles and hard work, the moments of joy and pride make it all worth it. Matt was recently able to participate in two of his older brothers’ weddings – including standing for photos and dancing with the brides and his grandmother – which his parents and Jennifer both recognized as an impressive and significant achievement.

“Jennifer explained to him what to expect – if there are no surprises, he’ll have a much better outcome,” said Bill. “She talks to him a lot about being flexible, which is not in his nature. That’s a work in progress.”

For parents dealing with their own child’s recent autism diagnosis, Janet and Bill say to realize that although the journey may look different than they expected, the goal is still the same – supporting your child in any way you can.

“Breathe and reach out to somebody who knows something,” said Janet. “It will work out OK.”

“Follow your instincts and pursue what’s best for your child,” said Bill. “Let it unfold and do whatever you can to help them.”

Therapy for Individuals with Developmental Disabilities at LiveWell Counseling

At Christian Health, we ensure our healing services are available to everyone who needs them. At LiveWell, our therapeutic outpatient counseling center, we offer compassionate mental health treatment to help individuals with developmental disabilities learn effective coping skills and reach their independence goals. To learn more, please call (201) 848-5800 or visit ChristianHealthNJ.info/LiveWell.