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“Are you sure he has autism?” The one sentence I am sure every parent to a child with Level-1 Autism is sick of hearing. From the dentist to his speech therapy evaluation, my son has been observed and his diagnosis has been questioned. In those times, it makes me want to ask, “Would you like to come home with us and wait until something doesn’t go the way he planned, or watch him stim over and over while he is playing?” I see the skepticism on their faces as they watch for a sign to jump out. The reality for autistic individuals with low support needs is fighting autism from both sides. You aren’t quite regulated enough to be considered neurotypical, or “normal,” yet you don’t fit the stereotypical mold that many people consider as autistic.  

My son was 4 when he was diagnosed, but we spent the two years prior going back and forth on whether we should have him evaluated. Even his pediatrician was unconvinced he needed a formal evaluation. We assumed his symptoms were because of a speech delay. His older sister has Complex Motor Stereotypies but is otherwise neurotypical, so we attributed his stims to stereotypies. Some days he seemed neurotypical, and the next was such a difficult day that I was crying to my husband, saying, “Something is going on.” He flew under the radar. It wasn’t until my husband and I watched Love on the Spectrum that we realized the spectrum is incredibly vast and that autism presents in many ways. Yep. We learned about autism from a TV show. When we saw our son’s traits in some of the cast members of Love on the Spectrum, we decided to move forward with a formal evaluation from a Developmental Pediatrician.  

My husband and I had general anxiety going into that day, but our son loved going to the doctor’s office, so we weren’t anxious about his behavior. However, this office was new, so he was dysregulated.  By the time the Developmental Pediatrician entered the room, our son was under the table, saying, “Okay, time to go!” With some coaxing and Legos, he finally climbed out from under the table and was calm enough that my husband and I could talk with the physician. With each question, I could hear the optimism leaving her voice. She told us she normally schedules another appointment for the diagnosis, but that she felt comfortable giving his Level-1 Autism diagnosis now.  

I felt ambivalent feelings; so relieved that we had answers, that he wasn’t just a “bad” kid. Yet I also felt incredibly sad for him and his unknown future. Will he ever be able to hold a full conversation with me? Will he struggle with learning? Will he ride a bike? Will he be able to go to college? Fall in love? Have children? All of those thoughts and questions swarmed my mind, so much that I was having a difficult time hearing what the doctor was saying to me. My husband took our son back to the car while I received a resource packet. I remember her asking me if I had any questions and, of course, all helpful questions left my brain. All I could hear was that my son had autism. I choked up and said, “I am just sad.” I will never forget her response to me: “Hey, the sky is the limit for him.” 

In a way, I feel like she is right. There’s a ton of resources out there. Unfortunately, we lived in a rural area when receiving his diagnosis. We had no access to ABA, and there was one speech therapist in the next town over who was not a good fit. That’s when my husband and I decided we had to move to a bigger city with more access to care.  

On the other hand, how is the sky the limit when so many people are ignorant of his diagnosis? I am not judging; I learned about his diagnosis from a Netflix show. However, it worries me he won’t be seen as someone who needs help. As if autism has a “look.” I think the world is moving in the right direction, yet there’s a lack of understanding (and resources in rural towns), which is leading to the abandonment of autistic individuals with low support needs.  

Shows like Love on the Spectrum and Atypical on Netflix, and Hero Elementary on PBS are bringing awareness to the strengths and challenges of autistic individuals, but we need more. People need to understand that you don’t have to be nonspeaking to be autistic. You can make eye contact or be affectionate and still be on the spectrum. You don’t have to be Einstein-level intelligence, nor do you have to like trains. Until then, people will slip through the cracks. The parents of these children will approach their behavior just as I did: like a behavioral problem that needs to be punished. Yet no amount of punishment will help an autistic person.  It will only leave them feeling more confused and hurt. They won’t understand why they behave so differently, nor will they receive therapy services that could be pivotal. 

Our family had to relocate for my husband’s career, and while the move has brought some behavioral challenges, my son is thriving. He is attending speech therapy at a practice that also serves as a training site for the Paralympics. He looks forward to going every week and is learning so much. He loves our local zoo which happens to have his favorite animal: sharks! My piece of advice for parents/caretakers: at times you are the only person who is advocating for your child. Keep pushing. If you are dealing with someone who doesn’t believe your child’s diagnosis, let them. It is not our job to convince others. People are finally talking about their challenges and experiences with neurodiversity. So hopefully, with time, everyone will have a better understanding of autism.  

With love and empathy, 

Shelby 

Shelby is a dedicated mother of three, balancing the demands of motherhood and homeschooling with her role as a supportive wife to a medical resident. She has recently relocated to the Midwest and has embraced the new challenges and opportunities that come with this change. As a mother to a son with autism, Shelby is committed to learning more about neurodiversity. Shelby is continuing her own personal growth by attending online college to further her education. When she finds time to relax, she likes to cuddle up with a warm, fuzzy blanket and read a book or binge-watch a series.