Autism touches the lives of so many. According to the CDC, as of 2023, around 1 in 36 children in the U.S. have been diagnosed with Autism. It’s something that influences communication, behavior & social interactions differently for each person — but one thing that transcends the specifics is the benefits of a supportive community.
So for Autism Acceptance Month, we reached out to moms in the Little Sleepies community with children on the spectrum to share their unique experiences — including Taylor, a cherished leader of our LS community management team, and Heidi, a member of our Facebook VIP Group.
These touching conversations reveal the special ways children on the Autism spectrum express their individuality, navigate their worlds & enrich the lives of those around them: from Huxley’s creative use of scripts to communicate, to Finley’s joyful singing and love of the outdoors.
By sharing these stories, we aim to foster a deeper understanding of Autism and encourage a compassionate world where every individual’s gifts are celebrated.
Little Sleepies: Tell us a little bit about your children!
Heidi O: My daughter, Finley, is currently 4 years old, she was 23 months old when she was diagnosed with Autism Spectrum Disorder. Finley is nonverbal and has lots of sensory challenges.
Although she is only 4, she is creative, fun, and so loving. A few of her favorite things are singing, counting, and playing outside. Finley has always loved to sing, she can sing full songs and has been able to since she was around a year old. She is considered nonverbal since she still doesn’t communicate but she does have the words to sing songs.
Finley also loves counting, and honestly anything to do with numbers. She loves to hyper focus on numbers and count everything. And of course playing outside, she loves to swing, climb, and run around.
Taylor B: Huxley is a vibrant 5 year old that was diagnosed just before he turned 3. Huxley never ceases to amaze us! He is a Gestalt Language Processor that uses scripts or sayings from movies, shows, and songs as his primary language. He has many Disney movies fully memorized! Some of Huxley’s favorite things are Golden Books, Baby Shark and Disney Pixar Movies.
Can you share a moment or experience with your child that highlighted their unique abilities?
Taylor B: Huxley has limited communication and doesn’t often show us all his amazing skills. When Huxley was in preschool we got a note home letting us know that Huxley was really enjoying sign language and would volunteer to go to the front of the class to show everyone the sign they were practicing that day. We had no idea he knew sign language beyond “more” or “all-done” from when he was a baby.
That day we learned he already knew the whole alphabet as well and numerous other signs. This really taught us to always assume competence with Huxley, even if it doesn’t seem like he understands, he probably does.
Heidi O: One of Finley’s best abilities is her voice. Although she is nonverbal, she has been singing full songs for years. She has a true talent for singing.
For the first year or so of Finley’s life, I just knew she was so special. She was such a great baby, an easy toddler, etc. We had noticed some delays in Finley starting around 6 months old. I was worried and scared that she was falling very far behind. I was beyond wrong though. Through her love for music, she has learned everything that her other aged peers are also learning.
It can be so hard when you have a child that doesn’t necessarily “show” you what they know. You can’t ask Finley what color the grass is, she doesn’t understand how to answer questions verbally yet. But you can watch her gaze her eyes to the grass and then to something else that’s also green. She has truly learned so much from songs and just music in general. We now have 2 other children as well and even though they don’t have Autism, it’s so nice to incorporate music into learning and play time so it connects them all together!
How has your journey with Autism contributed to a deeper understanding of individuality and diversity in your community?
Heidi O: One thing that is amazing about Autism is the community. Every 1 in 36 children are now diagnosed with Autism Spectrum Disorder.
Autism wasn’t something that I knew a lot about growing up. I pretty much knew the bare minimum. It’s really opened my eyes up to so much though, there’s so many different ways to learn, communicate, socialize, regulate, etc. Everybody is truly so different, and that’s true in the Autism Community as well. Autism is a spectrum, 1 person may have a characteristic and another may not but both are still Autistic. There’s so much diversity in the Autism Community because of that.
Taylor B: We continue to be reminded that every Autistic person is so unique, when you’ve met one person with Autism you’ve met one person with Autism.
It’s so easy to judge others, judge people’s parenting or a child’s behavior out in public, but having Huxley has really taught us to never judge and give people grace. You never know what someone else is going through or what someone’s capabilities or needs are.
In what ways has your child's diagnosis of Autism enriched your family's experiences and relationships?
Heidi O: Finley’s ASD diagnosis completely changed everything. I’d be lying if I said I wasn’t completely devastated when we first found out (not that I was ashamed, it just wasn’t what I had pictured my life being like with kids). I was scared of what her future would look like and also our families. There’s a lot that goes into having a child with an Autism diagnosis. Our first priority was her and making sure she had absolutely everything she needed to succeed. That included 6 therapies a week, financial strain (because insurance doesn’t cover all therapy and medical equipment), emotional stress, etc.
But honestly, I would do it all again. She’s taught us more about each other than anything. Our family created this fight in us to make sure she had everything in the world that she needed for her to be successful.
Taylor B: As a family we all come together to support Huxley and what he needs. Huxley has two younger siblings and they also want to support Huxley and understand that his brain is wired differently and sometimes his needs are different than theirs.
What are some misconceptions about Autism you'd like to address, based on your experience?
Taylor B: That Autism isn’t a negative thing, it’s truly just a different way of experiencing the world. We love that Huxley always gets to be himself, he isn’t aware of societal pressures that most neurotypical people are so painfully aware of.
Heidi O: The biggest misconception about Autism is that they are “slow” or “behind”. My daughter had an MRI soon after she was diagnosed. She was 2 at the time and compared to her same aged peers, her brain was actually taking in information faster. That is where sensory challenges come into play, she is trying to control all of her senses while also taking in information 2X as fast.
While a child with Autism might not be able to communicate or whatever challenges they may face, they technically may “know” just as much if not more than a typical child of the same age.
How do you advocate for your child’s needs in educational or social settings, and what advice would you give to other parents in similar situations?
Heidi O: The number one thing I would say to another parent advocating in an educational or social setting is that you know them best. Absolutely nobody else knows them like a parent/guardian does. You are in charge of the meetings, what you say goes. You know your child, stick with it to get the help, & resources they deserve.
We pulled our daughter out of a school district because they clearly were not doing what was best for her. It was the hardest decision but overall it was the best decision we could’ve ever made for her. She now goes to a school that truly cares about her.
Taylor B: We advocate for Huxley on a daily basis. We work closely with his school to ensure that they have measures in place to keep him safe (he tends to elope and could easily leave school grounds), challenge him (he is above grade level on nearly all academics), and support him when he is dysregulated or overwhelmed. When in public settings we focus on Huxley’s safety and wellbeing, sometimes that means that we make sure people around him are aware that he is Autistic to ensure they are kind and understanding.
I would encourage other parents to focus on their family and what they need, don’t worry about who might be annoyed by how you handle a situation or judging your parenting.
What message or advice would you like to share with parents who are newly navigating the journey of parenting a child with Autism?
Heidi O: One bit of advice that really helped me when Finley was newly diagnosed was that absolutely nothing changed besides a diagnosis. They are still the same child, they just have a diagnosis with it. Love them the same, treat them the same, everything else will fall into place.
I had no idea what I was doing when Finley got diagnosed. They sent me home with a brochure for different therapies and said “get on some wait lists”. She had already started speech therapy before she got the diagnosis, we were very lucky her speech therapist knew the ins and outs of everything. Soon after, she was in around 6 therapies a week, I had quit my job, and also had a newborn baby. Life got hectic really fast but it worked itself out.
Taylor B: It can be very overwhelming after receiving an Autism diagnosis, we were told to get Huxley in many therapies, find doctors who could support in different areas, sign up for programs, join support groups etc.
The things that have helped Huxley and our family is to always trust your gut, follow your child’s lead, and remember the diagnosis doesn’t change anything about your child, it just gives you the opportunity to better support them.
The advice and anecdotes shared by these wonderful moms in the LS community shine a light on the journey of parenting a child with Autism. Their experiences highlight the immense value of understanding, accepting and celebrating the differences that Autism brings into their lives. Through their children, Huxley & Finley, we are reminded of the profound ways in which individuality and a supportive community can shape a more inclusive world!
Let's carry forward the message of Autism Acceptance Month by embracing every individual’s unique gifts and advocating for a world that recognizes the strength in our differences.
