Overcomers: A Peek Inside a Life with Autism

A Life with Autism

During Autism Awareness month, many organizations share facts and statistics about autism as part of their campaigns.  I like this and I learn a lot from it, but I’m not always good at remembering them.   And I think that’s ok.

Don’t get me wrong.  The facts and figures are great for raising awareness.  However, I believe a true shift in perspective occurs when one gets to know the stories of the families and individuals behind any given cause.  I’m also more likely to remember that story and share it.

That’s why, to close out Autism Awareness Month, I reached out to an old friend, Alison, and asked her to share her story.   I haven’t seen her since childhood, but we re-connected through Facebook several years ago. It was there I watched with admiration as she bravely shared about her life with a son with autism.  Many of her posts made me smile or laugh and they deepened my understanding of what autism can look like.

Meet Remington

Alison’s son’s name is Remington, Rem for short, and he’ll be 10 in June. As she talked with me about him, it was clear how much she delights in him and finds the humor in autism.

She told me how she was perplexed looking through old photos of a family outing at a roller rink.  She was wearing different outfits in some of the photos, but Rem was wearing the same one.  Then, it dawned on her.  They had gone to the roller rink on two separate occasions, about a year apart.  He had remembered what he wore the last time and wore the same exact thing the next time they went.  He doesn’t do it much anymore, but he used to religiously wear specific shirts for other events as well. 

When he was younger, she also tried many times (without luck) to get him to eat meat.  Despite this, he insisted on purchasing a hamburger backpack when he was entering Kindergarten.  He also loved to wear shirts with hamburgers and hotdogs on them.

The family has acclimated to a life with autism, but it hasn’t been without its challenges.

The Diagnosis

Alison and her husband Carey noticed Rem’s behavior as a baby was different from other babies, but they didn’t initially think much of it.  He didn’t play peek-a-boo or interact with people who tried to engage with him.  He was happy by himself building block towers.  They assumed he was simply introverted, like his father.  Alison noticed as he grew older that he didn’t speak as much as neighbor children his age. Still, she understood what he needed and adapted by communicating with pictures.  

It wasn’t until 3-year-old Rem had trouble falling and staying asleep that they knew something more was going on.  They began the process of doctor’s appointments, and six months later, at almost 4 years old, Rem received his diagnosis.

From there Alison got in touch with an advocate, who helped them navigate services for Rem.  She encouraged Alison to ‘mainstream’ Rem’s education, which meant he would attend regular educational classroom with typical peers rather than pursue specialized placement.

Because of the advice of the advocate, Rem has been attending a mainstream school since preschool with a specialized supports team in place.

The Interview

Here’s more about Rem, directly from Alison.

What does autism look like in your family?

In our family, autism looks like anxiety, lots of self-isolation, schedule rigidity, OCD, and social delays (which definitely can affect family relationships and interactions).

What’s Rem’s understanding of autism?

We tell him, “Autism is your brain thinking differently” so he knows.  We even took him to the brain exhibit at Franklin Institute to show him what a typical brain looks like.  We told him, “You’re is just wired differently.”  He’s into science so he loved it!

Can you tell us a little about how you communicated through pictures?

This was done is several ways. We would print out the steps for say, brushing your teeth or using the bathroom and post them above the sink. That way he could reference them and become independent reminding himself how to do things. I think we had one for before/after school/bedtime routine as well. We utilized the Melissa and Doug magnetic chore chart, weekly calendar, and monthly calendar the most. I had a small wall space in my kitchen we hung them all on. For labeling purposes for toy bins and what not, I would just take pictures of his toys, print them out and put them on which toy shelf of bin they went on. Now that he has gotten older and can read, we just use regular calendars and written lists for different things.

What are some of the day – to – day challenges?

I always say, “You don’t know what you don’t know.”  We didn’t realize the challenging behaviors we were adapting to until we started working with an intervention specialist and realizing some of our habits weren’t ‘typical’.

Transitions.  Rem struggles with transitions and his schedule being altered. We have calendars easily accessible to him and he even keeps one of his own. We give warnings when an activity is going to end to help him prepare, especially if he’s in the middle of a project so he has time to bring the thought cycle to a close in his mind.

Social Delays.  Social delays and awkwardness are a struggle. This can affect a lot of aspects you wouldn’t think. Rem is very blunt and doesn’t have a filter, but he struggles to see how something could hurt someone’s feelings. This has created some very humorous situations, but it even effects situations where most people would look and see someone needed help.  But Rem doesn’t process that or if he does, doesn’t always know how to offer help. We usually need to address each situation as it comes up.

Generalizing.  Rem has difficulty generalizing. This means he has difficulty applying a concept that was taught in one situation or environment to another situation or environment.

Over stimulation. I always tell everyone; one single day trip requires 3 days for us. One day to have a chill laid back day at home so he’s not all crazy for the day trip. The day trip itself (where we usually take many breaks), and a day to recover. If we spend a day in the city seeing the sights, he does well and he definitely enjoys himself, but I can plan on not seeing him much the next day. He’ll spend the day in the basement with his LEGOs or on his iPad.

Literal. He takes things literally, so he has difficulty understanding sarcasm, innuendos, or idioms.

What are some of the joys you experience?

You have to find the humor in many situations when a person has autism.  Rem has difficulty understanding sarcasm or idioms so you can image some of the reactions he’s had to things we’ve said.

But in seriousness, autism forced us to interact more with our community than what we would have. After being raised in a very seclusive environment, autism was the catalyst to make us let go of old ways of thinking and embrace a new way of life.

What supports have been the most helpful?

That’s hard to say because it’s a team effort.  If one team member isn’t doing their part, all the other areas are affected. 

Speech therapy came first so it was very helpful at the time. Now, social interventions are the most beneficial.  

What does his support team look like?

He has his regular teacher in the classroom, then he has 30 minutes per week of speech therapy because he mixes up pronouns and verbs still.  He also has 30 minutes of social skills.  Then an autistic support teacher gives a lesson in the classroom with the other students.  He has a guidance counselor and an occupational therapist.  He’s no longer in occupational therapy, but he checks to make sure Rem’s ok.  Then he has a learning support teacher, who is kind of like the secretary of the team. 

He also has home and community supports – a behavioral specialist and a therapeutic staff specialist, or an aid.  He switched schools this year, and the transition hasn’t been easy for him.  The aid sits in the classroom with him to help out with this.

Talk about Rem’s talents, gifts, and abilities.

Rem has a great sense of humor is great a building things! He loves to figure out how things work and offer predictions. He’s good at math and noticing patterns. Rem is very independent especially for his age.

Can you share with us some of Rem’s humor? Does he tell jokes?

No, he doesn’t get jokes at all, but he loves Laurel and Hardy and The Three Stooges.   It’s more like circumstantial humor.  For instance, I have several water bottles of different colors.  The purple has a purple lid, the green a green lid, etc.  He likes to switch the lids so that the colors don’t match.  He thinks it’s funny because he knows it drives me up a wall!

The strangest things crack him up.  His class was making good-bye cards for a classmate who was switching to homeschooling.  The teacher said, “Don’t let the cat out of the bag!” He got the biggest kick out of it and wouldn’t stop laughing and talking about it.  He even included the phrase on the card he was making. 

What are some of his interests, hobbies, or passions?

Legos!! He loves to build things. He wants to be an architect/construction worker when he grows up. He loves science and STEM (Science, Technology, Engineering, Mathematics)  type things. And he likes to write stories (mostly nonfiction stories). 

Can you tell us about one of his nonfiction stories?

He wrote books about oceans, dinosaurs, and outer space.  He basically writes the facts and draws pictures to go with them.   He did write a Goosebump book last year, which was his first attempt at fiction. 

What would you like others to know about autism?

Autism is a spectrum disorder. Each kiddo is different. Rem doesn’t really get bothered by lights and noise but hates crowds and people bumping into him. So those places that offer Autism hours are fantastic but don’t really benefit our family and that’s perfectly okay! We just schedule our visits during slower visiting times. Another example would be Rem is verbal and can hold a conversation but struggles with empathy and processing emotions. But I have worked with other kiddos who can’t speak and are still able to express emotions and empathize. It’s all individual. But most importantly, kiddos with autism have personalities just like regular kiddos.

Just Like Us

My favorite part about Alison’s story is how, before the autism diagnosis, she recognized her son’s needs and adapted accordingly.  This is no different than what another mother might do for a typical child- learn the child’s personality and how to work with it. 

The phrase – there are no special needs, just different needs often runs through my mind when I hear stories of non-typical individuals. Like Rem, they are often in supports to help them navigate a world that may seem strange to them. 

What I hope these awareness events accomplish is a deeper understanding of what life is like for some people who have autism.  And perhaps it will challenge us to meet them halfway by diving into their world and getting to know them just like we would anyone else.  

Tags: Autism, autism awareness month, autism stories, life with autism