More Than a Label: Parents Find Joy in Uniqueness of Son With Autism

Denise McMillen has a message for parents who learn their child has autism: “See the able, not the label.”

That advice is good for all to hear, especially in April, which is Autism Acceptance Month. According to the Autism Society, the month “focuses on moving beyond mere awareness to foster genuine acceptance, inclusion, and understanding of autistic individuals.”

Formally known as autism spectrum disorder (ASD), autism is a lifelong neurological and developmental condition appearing early in childhood, characterized by challenges with social interaction, communication, and restricted or repetitive behaviors. Symptoms, abilities, and support needs vary widely, from requiring significant support to living independently.

“If you know one person with autism, you know one person with autism,” Denise said. “No two people will present the same. Autism is truly a spectrum disorder.”

Denise is the Mosaic at HomeⓇ Provider for her son, Andrew. Shortly after being diagnosed with epilepsy when he was 15 months old, Andrew underwent a full developmental screening because the seizures could cause regression. The social worker who conducted the intake interview noticed his lack of words and the unusual, repetitive way Andrew was playing with a music box toy and suggested the possible diagnosis of autism. Further online research led his parents to a “red flags for autism” list.

“At that point we were able to easily see that the autism diagnosis was likely, so when Andrew was officially diagnosed by the developmental pediatrician at age 3, we weren’t at all surprised,” Denise said.

Andrew is now 23 years old. Denise and her husband, Mike, care for him in their home. He does not speak, but Denise notes that doesn’t mean Andrew is not able to communicate.

“Andrew uses various forms of communication to express his wants and needs. He has a handful of modified signs that are only recognized by those familiar with him,” she said. “He has a NovaChat communication device that he’s been using for about eight years, and he used the Proloquo2Go iPad app for communication prior to that. Andrew will also use gestures, such as reaching for preferred items or activities, and often vocalizes to gain attention.”

Denise wants others to know that just because Andrew is non-speaking doesn’t mean he is not intelligent.

“Andrew’s receptive communication far outweighs his expressive communication, meaning he understands a lot of what is said to him, even though he struggles to express himself,” Denise said. “People should always presume competence until proven otherwise. Talk to Andrew like the adult that he is. If he doesn’t seem to understand what you’re saying, then you can simplify your language.”

She describes her son as very social and affectionate with a captivating smile that draws others to him.

“Those who get to know him love him,” she said. “As parents, we often say that Andrew has touched more lives in his 23 years than we ever will. Andrew is like human sunshine, radiating happiness to those around him. He’s got a carefree spirit; his belly laughs are the best, and his smile truly is infectious.”

As she talks about Andrew, it is clear Denise believes it when she says: “Your child is first and foremost a special person created in the image of God, and God doesn’t make mistakes!”

She is honest and upfront, however, that there are challenges. In Andrew’s case, the lack of understanding when he tries to communicate something can cause him great frustration, which sometimes leads to harmful behaviors.

“It’s very frustrating for him to want or need something and not have others understand what he’s trying to say,” she said. “This is when it’s important to remember that all behavior is a form of communication.”

For example, she noted that, in 2023 over a period of two months, Andrew experienced aggressive and destructive behaviors, and those around him didn’t know why. While Denise and her husband felt there was something wrong medically, doctors instead prescribed antipsychotic medications to treat the behaviors, which ultimately didn’t help. They finally learned Andrew had an impacted wisdom tooth that was causing severe pain.

“Andrew wasn’t lashing out at others and breaking things on purpose. He was just trying to communicate the intense pain he was experiencing,” Denise said. “It’s heartbreaking for us to know that he was hurting so bad for so long and we didn’t recognize it.”

Such realizations lead to a piece of advice Denise offers to other parents: “Give yourself grace if you find yourself in a similar situation.”

Denise believes early intervention is key in helping a child with autism. She encourages families to seek out the services their child needs, whether through special education in the local school district or outpatient therapies such as physical, occupational, speech, or ABA therapies.

“Your child can and will make progress with the right supports in place,” she said.

As parents, finding your own support is critical as well. Denise said online research and social media can be helpful, but so is connecting with other special needs caregivers as a reminder that you are not walking this often-difficult journey alone.

“Special needs caregivers bond quickly over shared experiences and often pass on resources or strategies that have worked for their child or family,” Denise said. “Physical and emotional support and the prayers of others are also a gift. The value in these relationships cannot be underestimated.”

In some ways, Denise said, Andrew’s disability “protects him.” She noted he enjoys doing simple things, like carrying around items that have meaning for him, such as balls or laminated pictures of his favorite people. He likes watching others push a vacuum (a fascination since he was 3 years old), going for a car ride with no predetermined destination, sitting outside in his camp chair watching people or watching his dad wash the car or do yard work.

“Andrew knows he’s loved, has his favorite foods to eat, and preferred items to hold,” she said. “He doesn’t care much about anything else. The opinions of others, for example, don’t matter to him. He doesn’t compare himself to anyone else, thereby demeaning his self-worth. He isn’t concerned with accumulating material items or social status ranking. He doesn’t deal with stressors that neurotypical adults face, such as finances or worries about the future. His disability protects him in this way.”

But the best—his parents find joy in him and his uniqueness.

“It brings us joy anytime Andrew’s face lights up,” Denise said. “He’s genuinely thrilled when a preferred person walks into the room and he rushes to give them the best hugs. We love seeing him overcome challenges and master skills, which can sometimes take a very long time. The only thing better is witnessing the pride Andrew feels in himself when he hits those milestones, big or small.”

Denise reflects proudly on all Andrew has taught her family through the years about what’s truly important in life.

“We are blessed!”