By Ethan Nahté
April is Autism Awareness Month. The word “autism” has seemingly become used more frequently nowadays. Perhaps because the medical community has a better understanding of it than they did even a couple of decades back.
One study reported 1 in 68 children are affected by autism spectrum disorder (ASD) and is one of the fastest-growing developmental disorders in the United States — more common than childhood cancer, diabetes and AIDS combined.
Matthew Stout, 15, attends Acorn High School. He’s a polite, well-mannered teen with an active mind, lots of hobbies, and a great sense of humor. Typically, he’s all A’s and one B, but he’s scored straight A’s the previous two nine-weeks-grading periods. He’s also a percussionist in the school band. He prefers playing a trap set over individual percussion instruments.
His parents are Steven Stout, an officer with Mena Police Department, and Angela Stout, a customer service representative for Union Bank. They do not shy away from discussing either Matthew or ASD.
ASD is frequently misunderstood, in part because there are many levels of functioning and each child or adult with ASD is unique. Matthew is high functioning. You may have seen him mentioned a couple of times this year. He took home gold at the Special Olympics Arkansas Winter Games in Springdale on Feb. 10. He was a part of the Area 17 Special Olympics Team (Conway, Arkansas) for Unified Floorball. Floorball replaced floor hockey.
Matthew also competed for his second consecutive year in the Area 14 Special Olympics Basketball Skills Competition. This year the competition was held in Booneville on March 1, where Matthew displayed several skills. Once again, he took home the gold.
Mathew’s favorite basketball team is neither a college nor an NBA team. “Honestly… if I have a favorite basketball team, I’m going to say it’s going to be Acorn High School.”
He began playing a little with his father and his older brothers, Noah and Mason, 21, twins who played on the Acorn team.
Steven said, “The basketball skills last year was the first time that he was actually out on the court doing an organized basketball thing.”
When asked what his favorite thing is about playing in the tournament, it is not dribbling, shooting baskets or such things — Matthew likes socializing.
For instance, Acorn student Drew Mabry and his family were the subject of the Pulse Autism Awareness Month article in 2022. Matthew enjoys talking with Drew. He sees Drew around school. In the mornings he will sometimes give Drew a thumb’s up, a hug or a high-five. People with ASD are said to often care deeply but lack the ability to spontaneously interact. Matthew seemingly interacts very well, freely giving high-fives and a thumbs up.
He also has Drew’s father Leo as his Special Education (SPED) teacher for math and English.
“I like [the subjects] very much, although they can be a little bit challenging. My favorite subject is science. My father used to actually be a science teacher.”
Matthew will be taking biology next year. His father was a public-school teacher for six years, teaching from seventh through 12th grade sciences, including life science, earth science, chemistry, biology, anatomy and physiology.
Unforeseen issues
Steven said, “I taught in north Arkansas and south Arkansas, then he came along and things changed. Before we were pregnant with him, I had gotten out of teaching and I had worked for DHS for a little while. He came along and we found out about his cleft palate, and the medical needs he was going to have. I was in between jobs. It was determined I would stay home and take care of him and Angela would return to work.”
According to the National Library of Medicine (NIH), the definite cause of cleft lip and palate remains largely unknown. The prevalence of cleft lip and palate is approximately 1.7 per 1,000 live births in Asia, which has the highest occurrence rate worldwide.
The CDC states about 1 in every 2,800 is born with a cleft lip without cleft palate and 1 in every 1,700 with cleft palate in the U.S.
The shrinerschildrens.org website, describes a cleft palate as occurring when the tissues that form the roof of the mouth don’t join together before birth. The opening can be repaired with reconstructive plastic surgery.
The effects of cleft palate run much deeper, causing functional changes in a child’s breathing, hearing, speaking and eating.
“We had a lot of medical trips,” Steven said. “He was fed through a tube implanted in his stomach for his first two years. He had a lot of surgeries. It just worked out I stayed home and took care of his medical needs and primary care.”
There were no signs of abnormality at the prenatal stage to prepare the Stouts. Angela said, “Everything seemed fine up until birth. It was when they were cleaning his mouth out, the swab came out through his nose. They said, ‘I think we have a problem.’ We sort of started our adventure at that point of finding things out. We had to go to Children’s Hospital multiple times.”
“They went through why he had the cleft palate,” Steven said. “They advised that one of the last things that develops in the mouth is the palate. He had the small lower jaw due to what they call the Pierre Robin sequence.”
According to John Hopkins Medicine, the rare congenital birth defect is characterized by an underdeveloped jaw, backward displacement of the tongue and upper airway obstruction. Cleft palate is commonly present.
“It may have caused his tongue to be in the way of the palate forming,” Steven said. “It usually leads to severe respiratory diseases.”
Although we hear of people saying they’re tongue-tied when they are too shy or embarrassed to speak, there is a real condition, “ankyloglossia,” that restricts the tongue’s range of motion, tethering the bottom of the tongue tip to the floor of the mouth.
Surprisingly enough, they were allowed to take Matthew home from the hospital, which was different than when Angela had the twins. Although she was considered full term with the twins, they were still preemie. Matthew was born three days prior to his due date, weighing 6 pounds, 8 ounces.
“We had a couple of days we were home from the hospital,” she said. “We could tell. When they’re first born, it doesn’t take long if there’s an issue with the feeding and they start losing weight.”
At one point Matthew had gotten down to 3 pounds.
“It was pretty scary. We ended up having to contact Children’s and take him to the ER,” she said.
The Stouts were at Children’s for 15 days that first time, going through every type of feeder they offered. “They actually made a special feeder called a pigeon feeder where the top part of the nipple of the bottle acts as a palate. Unfortunately, that palate was the widest case they’d ever seen. He had neither soft nor hard palate and everything went straight up to his sinuses. That we tried the most out of all of them for a while and it just didn’t work. We tried finger feeders and that didn’t work. We had to learn to drop a nasogastric tube down his nose and into his stomach.
“When he was about three months old, he was starting to meet a few milestones and that big, long tube was a problem. We talked to the doctors and they made the decision to put the G-tube button into his stomach.”
This type of tube lays on top of the abdominal wall and is kept in place in the stomach by a water-filled balloon. A special extension tube is attached when administering medicines or feedings.
“That’s the way he knew food for the first two years of his life,” she said.
“He didn’t take anything by mouth,” Steven said. “He didn’t have pacifiers. Tasting was after he turned two before he really got to taste food. He hasn’t slowed down since,” he joked, with Angela and Matthew agreeing.
They laugh as they mention the lunch ladies in the school cafeteria because Matthew loves to eat. Sometimes they give him extra. They’ll see the Stouts in Walmart and ask Matthew how he is then say, “He’s such a good eater.” His parents state the lanky teen eats healthy.
Matthew was 9 months old for his first palate repair. They corrected the tongue-tied problem. Then it was ear tubes, followed by a surgery in Shreveport, Louisiana, for exotropia of the eyes.
“That was from me driving around and looking in the mirror and noticing his eyes were looking outward,” Steven said.
Matthew had two palate repairs and multiple sets of tubes.
“Finally, a specialist at Children’s went in and cleaned up and repaired his ear bones,” Steven said.
“The first eardrum had perforated and was starting to form a cyst,” Angela said, “or so they thought, against his skull. So, we had to get that corrected. The other one followed suit later on.”
Steven said, “He’s had more procedures than I can count without looking back on notes. He still comes out with the best day ever and most positive attitude. He doesn’t let any of it slow him down.”
ASD diagnosis
The Stouts also realized there might be other issues.
“His good-natured personality…” Steven began, “We actually had a hard time getting doctors to listen to us. They wouldn’t believe he needed to be checked for autism. [Doctors said,] ‘No, no, he’s too loving and he talks, and he’ll look you in the eyes. He just doesn’t match any of our little red flags.’ I kept telling them, ‘I know, but I’m with him 24/7.’
“There are certain concepts he locks down on that we can’t get out. We finally got him seen at the Dennis Development Center through Children’s. They did their test with the speech pathologist, with the neurologist, with the behaviorist and they came back and said, ‘Oh, yeah, he’s on the spectrum. He’s very high functioning, but he’s definitely on the spectrum. Shouldn’t be a problem.’”
“Except for a few key concepts, it’s not a problem. It doesn’t impede him in school. It doesn’t impede him competing in Special Olympics. He and I spoke to a roomful of police officers at the Law Enforcement Torch Run kick-off conference. He stood up there with me and spoke.”
The Law Enforcement Torch Run ® for Special Olympics is the largest public awareness vehicle and grassroots for Special Olympics, according to the specialolympicsarkansas.org website.
Matthew is also a member of the Special Olympics Arkansas Youth Activation Committee (YAC). He spoke at a youth summit during the fall games back in November.
Matthew will also be participating in the spring games at the Bob Carver Bearcat Stadium on April 12.
“I was going to do javelin and bocce, but bocce is not ready yet for Mena High School.”
Steven said, “They’re going to do bocce. This [spring] event is what gets him registered for summer games. The bocce they offer at summer games is traditional and it’s 22 years and up. The bocce he has participated with is unified and is school age and up. He won a gold medal during fall games playing unified bocce, but because it’s not being offered for his age range, he’s going to do the javelin throw and probably the 100-yard-dash. Maybe a 4×100 relay if we get that offered.”
Matthew’s Special Olympics participation dates back to 2018. He’s stacking up the medals. “I had two silver medals the first year. Two gold and one bronze the second year. Then COVID. Then the winter games (2022), my father and I, and my teammates from Area 17 — I cannot leave them out. They did a big part, too. All won gold medals for each floorball game — from the first to the second to the championship.”
Matthew has quite a few medals, and Steven got a gold medal, as well, playing in the floorball event.
Matthew prefers the summer games, “… because it’s toasty nice instead of winter, which is harsh and cold.”
Hobbies and activities
Matthew also likes reading, which he is currently working through “The Chronicles of Narnia” series at the moment. He also enjoys reading mysteries.
He enjoys drawing sometimes, and watching TV, including YouTube LEGO® videos.
He loves building and playing with LEGOs. He said it is considered a mental activism for creativity and imagination. As a matter of fact, the entire family enjoys LEGOs, and they’ve been to the LEGOLAND® Discovery Center at Grapevine Mills Mall, not far from the Dallas/Fort Worth (DFW) International Airport.
“The twins are both LEGO fans. They were born into it,” Steven said. “I’m a huge LEGO nerd. Angela has her kits. She got a bonsai tree for Christmas. She and the boys got together and built her bonsai tree.”
“We need a LEGO room,” Angela said.
Matthew immediately suggested, “Maybe when my brother Noah moves out, I can have his room.”
Comic books and the related movies and TV shows are another favorite, especially the original Batman TV show with Adam West and Burt Ward. “Batman is my favorite DC superhero. Yes, he can be very rude and naughty, sometimes. He can be very violent, sometimes. Still, he’s a very cool superhero character. My second favorite in the DC Universe is Superman.
“My favorite superhero in Marvel is Captain America, the First Avenger.” Matthew really gets into the comic book action, including the sound effects, which he imitates.
For the most part, Matthew likes spending time with his family. “I like playing video games with my dad. Over spring break, this week, we played a lot of Minecraft Dungeons. I don’t game as much as my brother Noah. He plays Call of Duty a lot.”
They also frequently watch one of Matthew’s favorite shows, “The Andy Griffith Show.” Matthew gives some interesting summaries about shows such as Andy Griffith, “The Beverly Hillbillies,” and other programs he finds entertaining.
He has a speech therapy tool that is part of the Speech Buddies Tools that goes inside the mouth.
Steven described it, “You know the deals you blow and it unrolls? It looks like that, but it goes in the opposite direction to make him use his tongue to unroll it while using his ‘r’ sounds. It’s a new tool his new speech therapist just came in with. He does like most kids. He has a dog. He comes in and feeds her. If he’s got homework, he gets on his homework. If he’s got a test to study for — unlike the twins — he’ll go in his room and study. He’ll take care of chores. He sees things and says, ‘I’m going to take care of this. It needs to be done.’”
Matthew is back and forth on whether or not he wants to attend college. His father said, “We’re willing to just ride along with him as he discovers who he is and what he wants to do.”
Matthew has considered becoming a teacher. “I’ve got something that makes me feel like I could do this one day.” He explains his process of assisting others in class, providing some direction then allowing them to process the information in their special way instead of constantly talking.
Circus and rodeo fun
He and his parents also went to the circus during spring break. It was a first for both Matthew and Steven. “That was one of the best shows I’ve ever seen.,” Matthew said. His favorite part was Leo, the clown. “He had a little clown car that looked like a muscle car. I’m not sure how clowns can fit in there.”
“He really enjoyed Leo,” Steven said, “and that’s a step up because clowns have been an issue in the past, because of scary clowns in shows.”
“Creepy faces on them,” Matthew added.
“For him to get excited about [Leo]… ” Steven said, “He’s okay with rodeo clowns because he’s done the handi-capable rodeo for years. He’s cool with the rodeo clowns. For him to be excited and happy about [Leo] the clown, for him, I wasn’t sure how it was going to be. That was really cool. Of course, anything that’s got to do with animals. And the funny stuff.”
“He really enjoyed the aerialist — things he’s seen on TV but never in person,” Angela said.
Beyond the comical routines and death-defying acts, Matthew added that peanuts were also traditional at circuses, and he ate his fair share.
At the end of the night, they got to speak with some of the performers, who the Stouts said were very nice. Matthew and Angela also had their photo taken with the ringmaster, Simone.
As for the rodeo, Matthew believes his experience gets better every year. “I like riding the horses. I also like the hayrides, the roping and the barrel bucking.”
Worship
He also enjoys spending time with the Lord. The family attends Dallas Avenue Baptist Church in Mena. He enjoys the worshiping and the hymns. He said he doesn’t sing but hums the hymns. He likes the preaching, which he said, “… is storytelling from the Bible’s point of view.” He and his mother enjoy listening to gospel music.
YAC vlogs
When Matthew first began doing his monthly vlog for the Youth Activation group, he wasn’t certain what he should talk about after being given a list of topics. Steven had Matthew scoot over and started interviewing him on camera.
“We did a back-and-forth color commentary and submitted it. I told Angela I didn’t know if he was going to get the points for this, because they’re on a point system. The ones that participate the most get to go to things a little more. It came back and they said, ‘Wow, this was so great. The interplay between you and your son… .‘
“The woman who was over it, Jennifer Edwards, went to D.C. and that was one of the things they put on for YAC. All the kids in YAC wanted a copy of the video. We were the first ones on-screen. It was a lot of fun.”
Angela told them they needed their own show. “It sounds a lot like a show most of the times.”
Matthew tends to take on all roles of production and post-production, in addition to co-starring with his dad.
“It’s been a blast getting to do it with him,” Steven said.
After making several videos of the most recent vlog, Angela went through them, bloopers and all, and asked Steven, “How are you not worn out?” He replied with a laugh, “I’m exhausted. It’s the least physical thing I’ve had to do and I’m exhausted.”
Autism Awareness Month
“Autism Awareness is understanding we’re all different and we all have something special to offer each other, if we’d just learn to listen.”
Angela said, “It’s also a sense of community. There’s a large number of people here affected by this one way or the other. This gives them a chance to realize they’re not alone. There are more people here, whether they’re caregivers or loved ones or the people who are on the spectrum, that they can learn from, communicate with and find out more information. We have a group, BASE of the Ouachitas, here locally that really helps to get a lot of that information out there.”
Customers she’s met the first time at the bank will realize Matthew is her son and they might know someone in their family on the spectrum. That opens doors. “They feel comfortable talking to me or to Steven and asking a few questions. We can steer them to resources and just be there for them, so to speak.”
Steven said that at one time when he noticed “Baby on Board” signs, he is now seeing “Autism” signs. “I met a gentleman, and became good friends with him, at the Louise Durham drop-off, because he had an autism plate. We got to talking. His son is on the spectrum. We chatted it up. We’re both dads in the service industry. We’re dealing with this and we’re not alone. I’ve seen stickers at the schools that say ‘autistic child.’ Sometimes they have more information [such as] non-verbal.
“We have a resource with Special Olympics Arkansas that I would like to see grow. It’s training that’s available. They also have laminated cards that are not quite as big as that poster are for trying to communicate with someone who is non-verbal.”
Matthew described Autism Awareness Month thus so, “It’s people with disabilities that also have extraordinary abilities that people might not know in the future. But Special Olympics provides inclusion for a lot of those people with disabilities other than myself.
“Even those who are different than you, they are also equal because of their extraordinary abilities live in this community.”
Steven said, “Being in law enforcement, I’ve been blessed that raising a child that’s on the spectrum has given me an insight and an awareness of working and interacting with people that either have intellectual disabilities or delays in my job and in the community. We have a lot of people in our community that are ID or IDD, and that includes Down syndrome, that includes autism, Asperger’s which they’re kind of getting away from.
“There are so many aspects of autism that if you don’t look at it from that point of view, it may look like someone is on drugs or someone is self-stimming. They won’t look you in the eye sometimes, or won’t speak, or won’t stop,” he said emphatically, “and they continue walking away. It’s important to me that law enforcement learn more about dealing more with people with intellectual disabilities and delays, so they can fully serve the community and protect the community.
“My son’s going to be out there, and even though he’s high on the spectrum and interacts with law enforcement on a regular basis, there are some they don’t. Something that can be misconstrued as a belligerent behavior may be them just trying to process. Like Matthew said about giving a person time to learn something is giving them time to process. We all process things differently. Some people on the spectrum, it takes a little bit longer to process and it may come from a different direction than what we think of as normal.
“The neurodiversity, we have to understand that that’s not new. It seems to advance in this day and age because they’re discovering more about it. We have to be aware as a society, as law enforcement, as first responders — EMS and fire going somewhere. It’s important to know how to interact with someone who may not be able to sit here like you and I and understand everything that’s going on, especially in a stressful situation. Sometimes Matthew will shut down if it’s too stressful. Everybody’s just got to back off and give him time for that processing to catch up. For Autism Awareness Month, we don’t hide the fact that our son is on the autism spectrum. We talk to people. People have questions, we answer the questions. It’s not something that we see to be ashamed of, but it gives us an opportunity as a family to spread the message of inclusion… of neurodiversity… to help people like our son. We’re not all the same.”
Best day ever
With much joking and laughing between the three of them, Matthew told each of his parents he loved them, followed by, “It’s a good day. Actually, it’s the best day every single day. The Lord makes a new day every day.”
Steven related, “One day I had a bad day. We were walking down our street and he’s holding my hand. He looks at me and said, ‘Dad, it’s the best day ever.’
“I’m thinking to myself you’ve got good, better and best. You’ve got tenses. You can’t have the ‘best’ everything.
“I asked him, ‘How is it the best day ever?’ He said, ‘Because God made you and he made today and that’s pretty special.’ Argument done. When he says, ‘Best day ever,’ I don’t correct him. He’s right. I’m the one who had to look at it from a different direction. He had it straight-forward the whole time.
Matthew concluded the interview and having his picture taken with a hug, saying, “You looked as if you needed one. Best day ever.”
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