In October of 2024, our family received the diagnosis of Autism Spectrum Disorder (ASD) Level 1 for our 4th grade son. This is formally called Asperger Syndrome, but medically they no longer use this term and now define autism in levels. Here is a short article explaining the three levels, and here is one on explaining how they make these decisions. This change is helpful because now everyone who falls under ASD can receive the assistance and resources afforded to them. But it is also challenging. The spectrum is wide and even those with level 1 vary greatly in characteristics of the condition. Many still use the term Aspergers, or affectionately refer to themselves as Aspies, but after taking some time to understand the diagnosis, our son, who I will refer to as P in this post, prefers the term Autism light.
P loves talking to people about the things that interest him. When we visit the beach, one of his favorite activities is to take walks looking for shells, sharks teeth and creatures, but he also loves going up to everyone he sees, mostly adults, to discuss what he has found and what they found. And a lot of the time, he makes a new friend, and they end up giving him something amazing that they discovered. P has been doing this since before he could talk, and we joke that he will be a great politician or preacher some day. A couple of years ago on these beach walks, I had to start teaching him how to read people’s body language toward him. See that woman, she is looking at her phone, and she hasn’t acknowledged you, I would not go up to her. See how this guy smiled at you, he is welcoming you to come chat and so on and on.
Since the kid skipped walking and went straight on to running, and moves almost constantly, most people just assumed he had the hyperactive part of ADHD. And it is true that he was diagnosed with both, what is referred to as AuDHD. From kindergarten on, I have been in close contact with his school and teachers (and he has had the most amazing teachers). He is tender, loving, and brilliant, so the academics part of school have never been an issue. However, it was 3rd grade that I watched as the kids he so loved and so desired to be around began to pull away from him. It was subtle at first, but as the year progressed, I saw it more. Initially, I was not sure how much of it he was aware of. He also began to have more meltdowns, and because of this, we were unable to do certain things like carpool with others. If things were not in a particular way, like where he sat or who he was with, then he would have a hard time controlling his emotions. After a discussion with his teacher at the end of the 3rd grade year, I shared my concern that it might be autism, to which she said, don’t wait. So mid summer I called the same psychologist that helped us with my daughter’s diagnosis of ADHD, dyslexia and sensory challenges. She wanted to observe P in school, so we set up a time in mid September of the following school year for an evaluation.
Having this scheduled was a huge blessing because 4th grade started with a bang and was immediately the greatest challenge P has yet to face. What we quickly learned about level 1 of autism for kids like P is that as they grow and mature into school age, the challenging traits of ASD that may have been there but perhaps more subtle, become much more significant at this age and throughout puberty. So P’s nuanced differences suddenly became much larger, much more pronounced, and more challenging for him and for those around him to navigate on a daily basis.
P has been telling his friends about autism light. Recently it was his turn to be the 4th grade leader at his school. Throughout the year each student has a turn to stand up in front of the whole elementary school and share about themselves. By his own initiative, one of the things P decided to share was about how he has Autism and what that means. His own words of advice which he also shared with the whole school, “Even if you are not a first round pick, play like one. Even if people put you down and say you can’t do it, you gotta keep trying, you gotta keep going.”
Like every person is different, every person with autism is different.
Understanding P’s Autism Light:
A lot of the time he is a pretty typical kid, especially if he is comfortable with you. In his comfort zone, he is a leader coming up with wildly creative games; he will gather the neighborhood kids in epic tales of adventure. He is academically gifted in most subjects. Excellent at drawing, an avid reader and writer. He has been published in the local library’s annual magazine. He is competitive, loves lacrosse and football, trading cards and of course, tacos. Everything he wants to do is done with a massive amount of enthusiasm! Maybe best of all, he has a huge loving heart.
But there are things he struggles with that you may notice.
He can be impulsive, moves a lot, and makes noises sometimes too. What can typically look like hyperactivity, and is to some degree, is something called stimming . This is a way kids like P are able to regulate their nervous system. Stimming is a tool their body uses, and it gives people with ASD much needed relief. While it does need to be channeled appropriately, it is nothing that should be stopped or enabled. P’s stimming often looks like jumping, rocking, playing with objects, like tapping a pencil, and generally lots of movement.
He gets phrases and pictures stuck in his head. This can mean listening or watching something can be very unpleasant. His sister has a song she really likes, but every time he hears it he gets painfully upset. He was able to verbalize that the song gets in his head and does not leave, so now we listen to that one when he is not in the car. He will have a compulsion to repeat a word, fart and other potty words are popular. We do not allow the diagnosis to permit behavior that we and he knows is inappropriate. So we work hard on teaching and learning social norms. No potty words at school and what to say instead for instance. But now that we understand that sometimes his compulsion offers him sensory relief, or he may be using particular words to give him something to say when he doesn’t know what to say; we are better equipped to help him alter course and support new behaviors.
There is an order to certain things that cannot be changed. It looks like inflexibility or OCD. He has a seat at home that he must sit in. This, we are not flexible on, and I will not ask him to be. But we are learning ways to be flexible or “bend” with friends. Letting them sit where they want in the car or asking them what music they want first. Helping him to see the needs of others and be able to bend some of his rules to make way for them when he can. Recently his teacher moved his seat in school. He was upset to the point of tears but ultimately was able to overcome it and go with the change.The teacher applauded him for his ability to be flexible. This kind of dynamic is much harder for kids with ASD. A mom once shared with me that her son told her, “I have rules in my head you don’t know anything about.”
He can seem rigid or rude at times when ultimately he might just be hyper focused on a task. If he has a task in mind, he is set on it, and then for a time that might be all he can focus on. We went to see a show at a theatre, and I gave him his seat number. We of course were in the middle and had to pass by multiple people, and he was set and determined to find his seat. I heard a woman audibly gasping and going on and on about how rude he was. I got a little hot, and let her have it, not my finest moment.
Strong aversion to textures in clothing. Strong aversion to certain textures and smells in foods. His school has a uniform dress code, and once he wore the same pair of pants to school every day for a week. We have now moved on so he can wear more than one, but they have to be the exact same kind and navy not khaki, this is important. Athletic clothes are a little easier, but even those cannot be too big or loose and must be fitted. He is tall and lean, so he will wear pants that are too short in the length so they are not baggy or loose elsewhere. Same belt and shoes most days, same church outfit every Sunday. We have been fortunate on his eating, because I have been working hard with him since he was little. But there are some hard lines he will not pass. I cannot vary even a little from a recipe or a brand that he likes. Hot foods must be hot (sometimes we will reheat food in the middle of dinner) and cold foods cold. Absolutely no nut butters of any kind. But he loves most raw veggies and fruit, and lots of mama’s cooking so that’s a huge win! Occupational therapies can aid sensory struggles like these, often with great success over time.
He is literal. There is a right and wrong answer and way of doing things according to how he is interpreting each situation. This way of thinking gravely impacts how he perceives and responds; it is hard to express the gravity of it unless you experience it with him everyday. A friend was telling him your momma jokes, and P thought his friend was making fun of me and got very emotional. We are at the age where teasing happens daily for kids his age. He just does not understand teasing, and it is very upsetting. So we have had to teach specific rules, comebacks, and tactics on how to respond. There is right and wrong, bad and good. If the kids are teasing, he does not know how to respond, gets over stimulated and has large emotions.
He struggles with reading social cues, norms, and small talk conversations. When P is comfortable with you and discussing one of his favorite sports, collecting cards, or an invention or game he’s made up, then he is quite eloquent and a delight to converse with. But in small groups of peers his own age, where his age group is also learning the art of small talk and the environment is less structured, he gravely struggles. Masking is a way in which people on the spectrum work to mimic their surroundings when they are not sure how to behave. For instance, if the boys are making fart jokes, then P may make them even louder. If the conversation is jumping from one topic to the next or on something that makes him uncomfortable, he will make up crazy words and phrases and repeat them.
Now through puberty is a very important time to help kids like P learn and understand social rules that do not come naturally. Discussing all of these specific situations and how to learn from them daily will help. There is a real risk of enabling smart children like P. Giving them an out for poor behavior. That’s not what we want to do. We want to understand what they need and help them to achieve and navigate in a world that’s grey and not black and white. We discuss etiquette and how to have conversations on the way to school. I am paying him to read the book, “The Asperkid’s (Secret) Book of Social Rules” and we discuss it daily. I am currently listening to the audio book “Unwritten Rules of Social Relationships”. We see a fabulous psychologist who meets us in our home. I remind P daily of all his amazing God given qualities that make him so spectacular and to not care so much about what others think. “You be you, everyone else is taken.” In the last week he had a major victory in learning the art of small talk, at the school lunch table, this does not mean he will not face the challenge again, but it is why early intervention is so necessary.
Just from his diagnosis in October to now (currently 5 months), we have been able to gather resources and understanding that help us navigate each day. The school has set in place accommodations. We have found friends and activities that have been a major blessing. While each school day has proven to bring on its own unique struggles, we work daily to understand how his amazing brain works and the world around him. From day one, his smile would light up a room, and he desperately wants to experience life with others. He lives life to the absolute fullest and wants everyone to join him. My hope and prayer is that never changes.
In the beginning, I was not aware of how much P perceived his own struggle within himself and his peers. The good news/bad news is that he is very aware of the differences or his “big emotions” as he often refers to them, and he sees how the other kids have started to exclude, audibly be annoyed or laugh at him. I was told this is good news because if he wasn’t aware, he’d be further down the spectrum. And of course this is bad news because it hurts. But what I know is that all people were created by God. And regardless of how socal one is able to be naturally, we all need to belong. One thing I have learned about autism is that regardless of where on the spectrum from light, medium, to heavy – those kids need to belong too.
Last year, his teacher shared with me some of the kids were telling P to be quiet and stop moving. Living with him everyday, I genuinely see what a struggle it would be to try and learn next to him each day. But still one of the girls in his class spoke up, leave him alone, he cannot help it.
Teach your kids to be like her.
PE has been a major challenge this year in school for him. It’s a sensory overload situation, and there is some but less structure, and P has been teased and overwhelmed repeatedly. Probably just your run of the mill everybody gets it teasing, but still, he gets significantly upset. On one occasion, a friend from his class pulled a child aside and told the kid to stop pushing P’s buttons because he has autism.
Teach your kids to be like him.
While this blog originated due to me sharing ways to get your kids to eat healthier and stories of our journey through my daughter’s health challenges, this part of our journey has been harder to share. We do not want people judging or treating our son differently, and we do not want him to lose privileges when they should be afforded to him. The truth, it’s just all so incredibly nuanced. But the fact remains, he is different. And that’s okay, and sometimes you just need help from a caring friend. We (P especially) want as many people as possible to understand what walking through life with an invisible disability feels like. Looking the same on the outside but feeling, responding, and receiving the world totally differently than most of the people around you.
P has always walked to the beat of his own drum. We love that, and this is not a difference that we are ashamed of but embrace and learn from. But simultaneously, we are getting a real grasp on the challenges he faces, which with the right help, will only make him that much stronger and capable to be and achieve great things. We do not call ASD a super power, as some have, but we also know the world needs more beautifully autistic, outside of the box, brilliant thinkers. We need more people living in a world not made for them to help show others the way.
“Even if you are not a first round pick, play like one. Even if people put you down and say you can’t do it, You gotta keep trying, you gotta keep going.” – P
If you have taken the time to read this part of our Autism Light story, thank you, I hope and pray it has helped you in some way.
Reach out with any questions.
Live well friends,
Christy
