‘He’s really invited us into his world’

April is autism awareness month, and despite the many gains in raising awareness and understanding of the condition, there are still many misconceptions. The Neubauers, a Creston family, has witnessed the surprising variations of Autism Spectrum Disorder through their 6-year-old son Anthony.

Stay-at-home mom Jamie Neubauer, formerly of Mesa, Arizona, and her husband Tony – a Creston Community High School football coach orginally from Crescoe, were married in Iowa before moving back to Mesa. The family moved to Creston in 2018.

The Neubauers said when Anthony was about the age of 2, they started noticing things about him that weren’t like other kids. Anthony was hardly verbal, prone to meltdowns and had a hard time adjusting to situations.

“They referred us to have an evaluation,” Jamie Neubauer said about a children’s clinic in Johnston. “They did a full, four-hour evaluation and they said, on paper, he looked autistic, but they wanted to give him more time to catch up, and they diagnosed him with ADHD and severe anxiety instead and sensory-processing disorder then.”

The doctor also told the Neubauers that Anthony would most likely be diagnosed being on the autism spectrum if he did not undergo intensive therapy.

“We stuck him in occupational therapy, speech therapy, early intervention, we just did everything we could,” she said.

Understanding autism

In January 2019, Anthony was diagnosed with Autism Spectrum Disorder at Child Health Specialty Clinic in Creston.

“They said, ‘Well, come back in a year or two if you are still having issues, but otherwise, put him in therapy,’ and so that’s what we did until about 4 (years-old) and that’s when we had another evaluation and they said, ‘Oh yeah, for sure,’” she said.

Tony said he wanted to take more time to have Anthony evaluated as he was nervous about his son being labeled as autistic in school, and the troubles that may come with that.

“At the best schools and worst schools, kids get labeled,” he said.

The Neubauers said Anthony was fixated on certain things, such as the vacuum cleaner, and had to have certain things done a certain way.

Anthony’s quirks extended to him having to be the first person in the house. Tony said Anthony speaks like a normal 6-year-old boy, but it can be difficult to get words out of him since he has severe social anxiety. Since age 4, Anthony shows his excitement by shaking his hands and fingers in front of his face.

“If he’s even in the school buildings, he won’t talk, he totally shuts that down and he very, very seldomly talks and stuff like that,” said Tony.

Anthony is homeschooled, but doctors recommended Anthony be in public school to exercise his social muscles to better help him overcome the difficulties of his condition.

The Neubauers started Anthony in a special education program in public school when was 3, but his classroom experiences were aggravating more often than not. When the COVID-19 pandemic started, the Neubauers chose to homeschool Anthony with Jamie as his teacher. They said Anthony found it to be a safer and more comfortable working environment.

“It’s been a journey for everybody, I guess, because even, like, I’ve had autistic kids in school different than Asperger’s kids, but it’s different when you’re there the whole time” said Tony. Asperger’s is a milder form of autism.

Tony said it’s been a fun experience to raise Anthony and that it has made him a better person. He said his son’s progress has improved dramatically.

“I used to get excited about two-word sentences, now I guess he talks normal,” Tony said. “He’s put together LEGO sets faster than I can do math sometimes. He’s got very good critical-thinking skills and cognitive skills.”

However, Anthony is still very literal and direct when speaking to people.

“If you ask him, ‘Does this dress make me look fat?’ If it does, he’ll tell you,” Tony said.

Jamie said the medical community was behind on the reality of autism as it recommended therapy for Anthony as a preventative measure to stop his initial diagnoses from developing into autism. She said some of the science is outdated.

“It helped him, but it didn’t really matter, you know?” Jamie said. “He still had the same issues.”

Jaime said that their doctor was looking for specific symptoms, like “stimming,” which Anthony had not yet shown. “Stimming” refers to self-stimulating behaviors, usually involving repetitive movements or sounds. Almost everyone engages in some form of self-stimulating behavior, such as nail-biting or hair-twirling when bored, nervous, or need to relieve tension.

Stimming can become such a habit the individual isn’t aware they’re doing it. For most people, it’s a harmless behavior, but most people take social cues to self-correct the behavior when they notice it is disruptive or distracting to others. In people with autism, the behavior might be more obvious, but they have less social awareness. For example, stimming in autistic individuals may manifest as full-body rocking back and forth, twirling or flapping the hands.

Anthony doesn’t fit the typical stereotype of a person who has a mental or learning disability but is extremely gifted, which his father compared to a character the film “Rain Man” for creating a public misconception about autism.

When Anthony underwent the evaluation that led to his diagnosis, Jamie said it was hard to tell if he was even being evaluated as he was in a room playing alongside other children.

Tony said despite supportive teachers in the district, they chose to homeschool Anthony after unpleasant experiences because of his diagnosis. However, he said the weight of Anthony’s condition on his mind is not all-consuming.

“He doesn’t think about autism, he just is who he is, and we don’t try to label him in such a manner either,” he said. “He’s just Anthony. ... I bet 95% of the time I forget that he even has it, but there’s a 5% that comes up; getting upset about routine and something like that reminds me that we still have some work to do in some areas.”

Anthony has his strengths and weaknesses. Tony said the speech delay was was difficult because he didn’t really know what Anthony wanted, or if he was hungry or mad.

“He’s only been really talking for two years, I mean, good talking,” he said. “Stemming is the only thing that if you watched him normally, that would be the only thing I could think of that really sticks out, that and he’ll hum. His anxiety, when he worries about stuff, he’ll get glued onto something and he likes to be in control of stuff.”

Tony attributes his son’s progress to the commitment of his Jaime, her time, patience and attention, and Anthony’s therapy and interactions with other kids.

School

“He’s been in mainstream classrooms, so he’s always been around other kids to kind of pick up on social cues and whatever they’re doing, so I think that’s helped, and then the therapy,” Jamie said.

“The pandemic was a blessing for him, because he just hated school,” Jamie said. “During the 3 years he was in school, he never spoke at all to kids or adults, except for maybe a whisper or something.”

These experiences led to the discovery Anthony has selective mutism as certain social situations are so overwhelming he cannot speak. Tony said this part of his condition was developed as a defense mechanism against unpleasant classroom experiences. Before he was homeschooled, Anthony used to chew on his hands in the classroom and his anxiety has improved. He is much more talkative once he’s at home and around friends.

Anthony is also a self-directed learner, his parents say, as he’s always borrowing books from the library about fishing, gardening and other subjects.

“During the pandemic, everyone was just kind of waiting around and we realized once he wasn’t in school anymore, he just kind of relaxed and his anxiety went away and he could start thinking about other things like his interests and we spent the whole summer pretty much outside exploring bugs, animals, taking them home and learning about them and he just loved all that,” Jamie said.

Given that Anthony is a self-directed learner, special education was especially difficult for him. Anthony was left out of certain activities in the classroom due to some teachers not understanding his condition. His parents said Anthony felt like the classroom was pulling him back from learning about things that mattered to him. Tony added Anthony was never disruptive and Jamie said he had the help of an aid to keep him focused, but he still shut down.

“He’s a questioner,” Jamie said. “If he doesn’t see the point in something, he doesn’t want to do it, that’s kind of what school was to him.”

At home

Tony said Anthony was born six weeks early, but aside from having jaundice, he was a healthy 6-pound baby.

Jamie described Anthony’s 5-year-old sister Piper as “a built-in therapist.” Piper took the discovery of Anthony’s autism well and was patient with Anthony when he had tantrums. Piper will often sit through therapy sessions with him.

However, Tony said the typical sibling relationship is no different from that experienced by other families.

“Sometimes she’ll get jealous when he gets more time and more attention about stuff,” Tony said.

“She actually wishes she could have autism, though,” Jamie added. “She always says, ‘Do I have autism?’ when we first told her anyways.”

Given the spectrum of autism and its unpredictable nature, Tony said it is not that difficult to approach the topic sensitively.

“If you don’t understand, ask questions,” he said. “I had to ask a ton of questions too, and don’t assume something. People fall into the trap of, right away, ‘Oh can he count really fast? Can he count cards really fast? What’s his superpower?’”

Connecting with other families has been one of their greatest resources. Tony said the Ralston family, whose autistic son Isaac, a 2020 CCHS graduate, was helpful when learning about their own son’s condition.

Overall, the Neubauers said that the journey of raising Anthony has been joyful and enlightening.

“He’s taught us just as much as we’ve taught him,” Tony said.

“He’s really invited us into his world,” Jamie added.