Autism Changed My Plans, Not My Joy

I've tried to write this so many times. And like so many times, I don't know where to start and I have no idea how to organize my thoughts. There are so many beautiful things about my child to tell you about and I'm too excited to share them coherently. Now that we are past Autism Awareness Month, I feel compelled more than ever to tell you how perfectly normal my child is instead of the stigmatized, broken creature today's rhetoric wants you to believe.

There is not one thing about my child that I would change.

Ok, that's not true, I might change his cleaning habits, maybe adjust the attitude a bit.

But the way he is created? His brilliance, creativity, thoughtfulness? Nothing about this is worthy of changing or worth the worry of whether it was something I did wrong during my pregnancy.

Because nothing is wrong with my child.

There is nothing inherently "wrong" about autism.

Truth be told, I did grieve when we were handed the diagnosis. He was 8 and we had been in so much occupational therapy for severe ADHD that all of us missed the autism. He is level 1, high functioning - what we would consider Asperger's before DSM-5. The wonderful thing about his diagnosis was how everything made so much sense. All the struggles, the lack of progress, the frustrations, and the roadblocks were all resolved. The road ahead, while still unknown, was much clearer.

But eventhough the path was more clear, it still wasn't the journey of what we expected as parents. We had envisioned participation in school activities, birthday parties, multiple friendships, neurotypical stereotypes many take for granted. We imagined awards days with multiple academic achievements comparable to other students and afterschool activities we complained about. We grieved that. And honestly, sometimes I still do. Sometimes I find another piece of what I expected for my child and find myself adjusting that to who he actually is without any grief or desire for change for who he is becoming.

Again, my child is perfect the way he is. He is who he needs to be and I've been given the gift of helping him become the best version of that. The only thing that separates him from my expectations is truly how I anticipated being his mother, teacher, and support.

Autism Is Neurological, Not Something to Cure

Rhetoric today has unfortunately crystallized beliefs that autism is something to heal or to cure. The truth is that autism is a neurological disorder. The synapsis in the brain fire differently, not dysfunctionally. There is no disease to treat or medicate. Autism doesn't have an infection, there is no injury, and no defect to surgically or medicinally correct.

I like to think of my son's autism as learning a language he needs me to speak for him to understand. While he is verbal, he is concrete and requires reinforcement and shorter communication to process instructions or details. He might not be looking at you and he might very well be engaged in an activity that is allowing him to exert the excess energy that is distracting him from listening to you. But he is hearing everything you say. Memorizing every detail. Storing every fine minute into his remarkable memory bank.

He was born this way.

Not only is his communication different, but he also processes sensations in sometimes overwhelming ways. We taught him about his ADHD using the example that he has multiple TVs on in his head and his brain has trouble tuning into one at a time. With loud noises, this can create the sensation of not being able to tell which TV to focus on. It's a constant pull of "look at this and this and this and this". Just like a computer freezes when given too many commands at one time, the autistic brain enters a constant state of buffering when overstimulated.

Imagine the frustration and panic sensation of a frozen brain in an 11-year-old. In our world, we must practice guided techniques to recenter him: what are your hands feeling right now? Are they hot or cold? Tight or loose? Can you feel your heartbeat? Is it fast and hard or slow and normal? I see you're breathing really fast; can you breathe with me so we can slow it down? This isn't some Pinterest calm-down script. This is literally me in the school pick up line.

Most importantly for me, I work hard with my son and his teachers to build his social skills. When we first started this journey, my son didn't even ask a person's name when he wanted to play. Gradually, we went from learning how to introduce ourselves to asking how a person's day was. Currently, we work on remaining topic focused when we talk and learning to share conversation.

These sound so simple, but they are huge for him. He can hold a conversation with adults better than a lot of adults I know. He uses big words kids his age don't know how to define. As a parent, I am proud of this while simultaneously terrified of is upcoming middle school and high school years. He is so excited to share encyclopedic details about his favorite interests without being able to gauge if the person he's talking to his genuinely interested. Side note: I've since learned that his never-ending monologues regarding the uniqueness of G1 Transformers and Transformers Rise of the Beasts is his way of showing affection. That's his way of communicating "I love you, I'm interested in you, and I want to share this with you because it's something that makes me happy so I think it will also make you happy".

I can never change that. I can only continue to encourage him to not only show love the way that he knows how but to also express love and interests in ways that his peers receive it. It's not changing him; it's helping him grow a new flower bud next to his current blossom.

At the end of the day, I pray he lays his head down safe in the belief that he is perfectly OK the way he is, perfectly safe to learn how to better interact with people his age, and nowhere in between that is the expectation that he should be different than who he is to have social success. I’m not interested in a version of my child that exists only after we erase the parts that make him who he is.

I imagine his mind constantly turning and dissecting what he sees.

The Grief We Don’t Talk About (But Should)

For all the parents of an autistic child, let's be honest for a second: we have grief.

But our grief is not the loss of a child. The grief is not the burden of intense caregiving and constant IEP battles. Not really.

While our grief wears this disguise, it's a mourning for the expectations we once held. It's a terribly conflicting feeling to have so much joy and appreciation for this beautiful child you have and have guilt for wondering what your life would be like if your future had been neurotypical. Our grief is about the future we thought we were getting, not about our child's worth.

That's hard to say out loud. I'm terrified of the judgement for this internal conflict.

To risk the stereotype, we as mothers especially carry the exhaustion of making sure all the extra needs are met. Before the diagnosis, there was only exhaustion and frustration, the questions of "why does this feel so much harder for me while all the other moms supposedly have it together?" and "why can their child hold a conversation, and mind can only tell me three words?"

I can only compare it to a hypothetical what-if.

What if you were told you were gifted a trip to Disney World. You plan for a trip to Florida, prepare for the heat, budget for the lightning lanes, and look up the menus for all the restaurants you want to try.

You have done all your research and are fully prepared for anything the mouse can throw at you.

And then it's time to board the plane.

You find out at the airport that your tickets are actually for Disneyland Paris. A totally different park, in a country you've never visited. You've never looked up this park. You don't even know where to find the map, the menus are in French, and the Lightning Lanes are done on the Genie+ system you've never even opened. But the rides are the same, the food is still amazing, and you have so much fun you don't even remember how long you wait in line.

Both trips are a real dream, just different than the one you packed for. But you still think about that avocado margarita you heard about at the Mexican pavilion in EPCOT and wonder what it tastes like.

I didn't lose my child; I lost a script I didn't even realize I was clinging to.

Everything lives on the Internet forever so I know there will come a day that my son will read this, and I pray to God I leave no doubt that I have never mourned him. To my future son, you are absolutely perfect and I have cherished every second of being your mother. You have taught me so much and I cannot wait to see how you change this world we live in. Never let anyone convince you that you must change who you are - you are exactly who you need to be right now, in this very moment and in every moment.

My child's worth has never been a source of sorrow for me. My only doubt has been if I am enough for him. I imagine many parents of autistic babies feel this way and to you I say: our grief is over the abrupt change in our imagined futures. I imagined a boy that would love all things sports and go on bike adventures with me. Meanwhile, thank God my son could care less about baseball or football. It is not who he is. It is OK for me to wish my son loved outdoor adventures as much as I do while simultaneously falling in love with watching him build rollercoasters in an engineering class.

The Joy I Didn’t Expect

What I didn't expect was how much joy I would have with this different script.

I have learned so much from my son. For me, transformers were intended for transforming and fighting. For him, there is transforming, more transforming, combining, transforming again, maybe some fighting, but more transforming - sound effects included. Drawing doodles for me was like a conscious stream of thought. For him, art is thought out, meticulous, and detailed. You can see the way his brain turns things over repeatedly until they make sense on the page. We really need to talk to Hasbro about some of these step-changers he's created.

Where mornings were once routine and habit, now they are structured yet flexible. We might still have routine, but that routine must be able to adapt to a hard morning. We wake up earlier and take things slower. A quick breakfast for you can take us an hour. Instructions to get dressed are broken down into steps to maintain focus.

And positivity must be king. Unfortunately for me, it's been natural for me to point out what went wrong or what needs to be improved. These days I focus on the wins and celebrate every victory, no matter how big or small. "You got your math homework finished this week!" is rewarded the same as a great report card.

Most importantly, I feel strongly about recognizing how hard he works in school. For many neurotypical children, goal-based reading and extra-assignments is finished in just a few minutes. For my son, it can take him weeks to hold focus on one chapter of a book. Homework assignment comes with multiple breaks and shortened assignments. Awards days are spent watching the other kids be recognized for what comes easy to them, while I personally believe my child (and every other SPED child in his school) worked twice as hard to just stand in the same hallway. We ignore the bad grades and champion the positives: "You finished you whole test in one sitting?? That's fantastic! Let's celebrate! You pick dinner tonight!" or "Let's hit Five Below! I'm so proud of you!!"

I would be remiss if I didn't talk about my son's sense of humor. He might be quiet, but his wit has teeth. With one short sentence, he will say the exact thing you didn't realize you were already thinking.

With autism, there is the intense focus, unique humor, and preferences that become personality. The milestones changed but the meaning didn't. Joy doesn't have to look typical to be real.

What Actually Needs to Change

The hardest part of this has never been my son.

It's been the adults who keep insisting the autism is wrong.

I am tired of feeling the need to apologize for my son's autism. The peering eyes at the grocery store when he's not able to get the concept of time when he's wanting to go home. The grandparent just telling me to let him be a kid when he's loudly ticking and I need to help him regulate in an overstimulating environment. Or the other parent who tells me to just "let him learn the hard way" (seriously, this line is disgusting) or tries to reassure me "he'll figure it out eventually".

I am not going to apologize for my child being autistic just because I must repeat instructions or reinforce expectations in a way that looks different to you. Telling my child what to do once and expecting immediate compliance is built on the assumption that they process language the same way neurotypical people do. They don’t. Repetition, clarity, and sometimes a completely different approach are not signs of defiance. They are signs that we need to adjust how we communicate. If we took the time to understand, we would be a whole lot closer to real inclusion. This is how we get better at identifying needs, creating inclusive environments, and giving instructions that autistic individuals can process and respond to.

My child is not the problem in a room full of adults who refuse to adjust.

Why I’m Not Trying to Change My Child

I am not trying to change my child.

My goal for my son is help him communicate and help other learn to communicate with him. I want him to feel safe with who he is and in advocating for what he needs. I want him to feel supported and heard. I want him to have access to a world he can be productive and actually thrive.

My son's dream is to build a robot that helps people. It's simple and pure. I fully believe he can do that.

I'm not trying to make him exactly like the other kids. Forcing him to be the cultural definition of "normal" comes at the expense of his well-being. Supporting his growth does not mean eliminating what makes other people uncomfortable.

To change him is to rob him of his potential.

I will help my child navigate the world. I will not ask him to disappear into it.

Support Matters More than Normalization

While I appreciate the idea of Autism Awareness. I hate that it's becoming commercialized. Yay, we have a whole month - nothing is changing and propaganda seems to be everywhere.

Today, more than ever, advocates must become louder to combat the hyperbole and rhetoric coming out of the ignorant. Instead of asking "how we fix autism?", we must start asking, "How do we support autistic people better?"

Awareness is not enough.

It's not the fact that a person with autism is different that makes one uncomfortable - it's the fact that people don't know what to do. As we continue to learn more about the brain, autism, and broaden the spectrum of neurodivergence, acceptance and action are becoming critical to success. This isn't a disease and I even hate calling it a disorder. It's an entire way of being, a whole personality that speaks a different language. Our job is to learn how to speak that language instead of forcing conformity.

I don't want to change my child. I want to change what the world expects of him.

About the Author

Stephanie Pilkinton, RN, MSN, FNP-C, PMHNP-BC

Founder of Sweet Tea & Science | Nurse Practitioner | Writer | Wellness Advocate

Stephanie is a dual-certified nurse practitioner with a passion for blending evidence-based medicine with everyday life. She believes wellness should feel approachable, not overwhelming — and that a little Southern comfort and curiosity go a long way.

Follow her journey and join the conversation at Sweet Tea & Science.