Life with a Family Member with Autism

Wednesday, April 5, 2023

To honor the contributions of people on the autism spectrum and the autism community, as well as acknowledge their needs, the month of April has been recognized as World Autism Month for the past 16 years.

“As a pediatrician I am privileged to assist families with autistic children and help them navigate, in a small way, that uncharted path,” says SouthCoast Health pediatrician, L. Nelson Elam, M.D., FAAP. “As a father I am daily immersed in helping my son with autism and his neurotypical siblings.”

To commemorate World Autism month, Dr. Elam shares an essay written a couple years ago by his eldest son, Simon, that captures his family's unique journey with an autistic family member.

“The essay describes my son's experience as an older brother and our family’s journey,” explains Dr. Elam. “Although our experience may be different than most, it is still important to tell. The saying ‘If you have met one person with autism, you have met one person with autism’ is certainly true. Every autistic individual you meet is unique.”

Read the full essay, Life with Lucas, below. Some names have been changed to protect privacy.

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Life with Lucas

I heard the unmistakable screams from the driveway. The house shook as the enraged 8-year-old boy slammed his fist into the bedroom door again and again. Our father sat nearby waiting for him to calm down while also stabilizing the picture frames on the other side of the wall.

I had made an enormous mistake by refusing to let Lucas, my brother, come along with me to the store.

“I listen to podcasts where they talk about their families and their special needs children and they make it sound like it is such a wonderful experience for them, how it's brought them so many blessings,” said our mother in a conversation after another hard day. “I just don't often feel like the hard, grueling part of it is represented well enough. They don't represent how hard it is on the parents and on the siblings.”

Unpredictable. If any word describes Lucas, that one does. He is full of love, thoughtfulness, humor, and imagination. But Lucas’ autism makes him emotionally unstable. He gets hyper-focused on certain things and then can’t focus on anything else. He struggles with social connection because of his loud, disobedient, aggressive, and sometimes violent behavior. He switches moods seemingly out of nowhere, screaming nonsensically, hitting, and pretty soon neither you nor he knows what he wants.

Episodes like this got so bad that earlier this year I quit my job to stay home and help. Lucas was now newly homeschooled after getting kicked out of public school. As his brother, I tried my best to prepare him for life. He and I spent hours digging up bricks from around our old chicken coop and piling them together to make a rocky river feature down the backyard. He loved breaking up the bricks into small pieces with a sledgehammer. Thankfully, he had less trouble focusing while doing work on the house with me. As part of our routine this past March, I took Lucas on wagon rides through our neighborhood every day. The azaleas were in bloom, and he always chose one to take back for Mom or one for our sisters.

“Hold this one for Mom,” said Lucas, holding up a Spanish dictionary.

We have a neighborhood bookshelf and even though Lucas can’t read, he always wanted to take multiple books back for members of the family.

On these walks, he always asked a million questions. He loves the obvious. Sometimes he asks irritating questions when you’re doing or thinking about something else.

“Do you like having a headache?”

“Is this too loud?”

“Should I stop being so crazy?”

“Is being sick fun?”

If he is hyper focused on trains for the moment, every conversation will come back to trains.

“Can we go on a train trip?”

“We have to plan it, right?"

“Do you like trains?”

“Are trains fast?”

On and on he goes. Nothing can distract him from his one-track mind.

No one knows the struggle of working with Lucas, trying to help him learn, like our mother. She has spent hours and hours working with him every day.

“There are a lot of people who believe in the stereotype Asperger’s syndrome type of autism where they are really bright in a specific area or secretly really bright,” said our mother. “Sometimes they think your child is this hidden genius and maybe he's not being parented right or taught well, and they don't see that he struggles to even count up to four or five sometimes.”

She talked about the persistent efforts to teach him simple things such as counting and how it’s been hard to have any success with his fleeting interest in school.

Lucas moved his “Sorry” game piece along the path, tapping the board with each number, “1,2,3,4,5,6,8,9,10. Sorry!” He said as he taps Jason’s game piece. Yes, he missed the number 7 and landed on the wrong spot, but Mom is just glad that he is playing nicely with friends.

“No, it’s this one,” Lucas’ friend Jason said, pointing to the right square.

Lucas has played games like this countless times before, but he still hasn’t grasped the concept of counting the spaces. Nearly everyone who has spent more than a few days with Lucas has tried to teach him how to count, with no success.

“Let’s move it to the right spot,” mom says, moving Lucas’ hand to help him count the spaces, “1,2,3,4,5,6,7,8,9,10. Alright, your turn Jason!”

Jason is one of Lucas’ friends. They are about the same age, but most of Lucas’ other friends are 3 or 4 years younger than him. Our parents try to help Lucas have interactions with other kids so he can learn social skills and have a better chance at learning other skills. Our father expressed his concern about Lucas’ future one night over dinner.

“We have to plan- what if he can't be self-sufficient?" said Dad. "We have to figure out a way for him to be taken care of.”

We’re still working on helping him develop consistent interests and skills.

Lucas entertains many with videos and pictures he sends out to seemingly random contacts on my Mom’s phone. He steals my Mom’s phone and captures pictures of everything and everyone, including lots of selfies. He records videos of himself singing and playing his piano and uploads it to YouTube or sends it out through text, unbeknown to us.

“Remember the swimming pool?" Mom said as she, Dad, and I laughed out loud reminiscing about Lucas. "He took a picture of how he had pooped outside the pool. He took a picture and sent it to people.”

It was in my sister’s boyfriend’s backyard. We could tell it was him because his foot was in the bottom right corner of the picture. He sent videos of his songs to family members, deceased friends, church members, and random acquaintances. I always laugh when I see a message from Mom that seems out of the ordinary. I’m a student now, and I look forward to those texts with my time starved schedule.

“Alright, I’m not going to bother your school now,” said Lucas, twisting his fingers together. It’s 10:30 p.m., and I forcefully told him to leave after unsuccessfully attempting to finish my reading assignment for several minutes. I wasn’t expecting to be home once school started. I am close to him all the time but unable to interact as much because of school demands.

“Aren’t you supposed to be in bed anyway?” I say with some frustration.

“I had fun with my friend today,” Lucas says, talking about his day hanging out with his friend.

“That’s awesome bro,” I reply. “Now go get some sleep. I’m about to.”

After wandering around in my room for a few minutes, Lucas gave me an uncomfortably tight hug and said, “Good night, Simon. See you tomorrow.” Lucas Elam leaves a mark on everyone he meets. Although he may be unbearable at times, he is still one of the most affectionate kids I know. This crazy kid makes life hard, but he also makes it really good. And I think everyone should meet him.

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If you suspect or are concerned your child may have autism, SouthCoast Health pediatricians are here to assist you and your family. A specialist at SouthCoast Health can provide you with the guidance and support you need. To make an appointment click here, or call 912-691-3600 to learn more.

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