The Box

Person holding box with colors flowing out

I wrote the below article six years ago. Six years ago I knew very little. Only my lived experience and witnessing the few experiences around me. Each one different, individual.

Today, I know very little. Only my lived experience and the many individual experiences I am learning about. 

I know more. I know we have work to do for acceptance, understanding and accommodations. I know that we turn 18, but our needs don’t change, though our adult environment often does. I know there are many other families, caregivers and neurodivergent people that still feel alone, misunderstood, and lost. I am committed to continuing the mission to bring our lived experiences together as individual parts of a greater, amazing whole.

Below describes where I started to open my arms to the whole. To erase the negative comments that I did something wrong; that he did something wrong. This was my lived experience, and much is still relevant.

We have so much work to do in lifting up our individual strengths as a community, but I see and hear stories of progress, the elimination of an inflexible box. 

Out of the Box -2016

My son and me around 2016.

For the most part I have kept my autism journey quiet. For those of you affected by autism, please know this is my journey. I know yours is different. If I have highlighted autism in a way that will hurt the progress you have made mwith your child, please say something. I am learning and growing everyday as I navigate this.

Please, if you are a parent of one of his friends or classmate, if hearing the word autism will skew your view of my amazing child then please stop reading. However, if you want him to continue to have friends, be a good friend to your child and teach them that we are all different in many ways and that’s ok, please keep reading.

I have confided in a few friends, but overall it has been a quiet journey. A journey that I didn’t fully understand and still am struggling to understand. Instead of explaining my child has autism, I would apologize for his behavior (usually wasn’t bad, just different) or I would skip the event. Often I would bring him, knowing that he would struggle to hold himself together. We would handle the fallout of the anxiety, fear, and overstimulation privately, at home. I have even apologized once to a parent of a child with autism. I knew she understood, but I still apologized.

I have even avoided traveling or staying at homes that he doesn’t know. Not because I don’t want to visit with you, but because I was worried about judgement. I know it’s silly because if I want to visit you, I know you are a person in my life that will understand.

Why, didn’t I say, ”My son has autism,” and then educate my loved ones and peers? Why did I not tell the woman on the plane who stopped me in the terminal to give me parenting advice on how to discipline my child? (Side note: He had been on 4 planes that day, up at 3am and it was now 7pm. I wanted to cry and tell my mom I wanted to go home too.) Why have I not talked with his friends parents on how to educate their children?

It has taken me some time, a lot of thinking, more firm answers from studies on his struggles and I think I have the answer to why I have been so quiet. We are so quick in our culture to fit everyone into a box. To fall back on our biases, yet not recognize that these are biases. We often don’t ask questions about how to understand someone or something. We naturally take our assumptions and move forward. I do it, you do it, it’s natural.

I have never met a kid with autism that fits in a single box. They all have something wonderful to give to the world. They all have different challenges. Each family has a different journey. It can be an exhausting journey but one filled with more love than imaginable.

I hear often, kids with autism don’t have friends, they don’t have empathy, they aren’t good at sports, they only like one thing, they are savants (Rain Man), they can’t love, they are weird, and so on...Not one of these IS autism. It is individual. Some of you aren’t good at sports, but you don’t have autism. Everyone is different.

I know why I have spent my time trying to hide autism, because my son doesn’t fit the box society has put autism in. No one with autism does.

Having Buddy, the service dog, has helped to increase quality of life and access. He truly is his Buddy!

My son loves. He loves with all his heart. He wants to be hugged, but he won’t hug you back. Not because he doesn’t love you, but because his body isn’t comfortable. Don’t force him to hug you. He misses his brother when he is not around. He cries when Dad is gone flying. He gets sad if you don’t tell him goodbye. He is disappointed if plans with you get canceled. He was looking forward to seeing you. He loves.

My son is an amazing friend. He will support you and laugh with you. He will give you a high five and say what you did was cool. He wants you to be happy. But it can be hard. He won’t understand that you are upset. He is working on reading body language and facial express. He doesn’t see your eyes narrowing at him. As his friend you have to tell him you are upset, worried, sad. He needs to hear the words and then will try to understand. His autism makes it hard to see facial expressions, to understand body language. He doesn’t understand sarcasm, innuendos, and figures of speech well. Jokes can be hard. Not because he’s not funny, he is very funny. But more so he is a good friend.

Teen sitting behind bins of tolietries after collecting them at his school

Compassion. He came up with and started a toiletry drive for families in his school district and at a local family shelter. This was done at his elementary school and continued after he left. He is innovative, stating, "We have to make it a contest and give the winning class food." He wasn't wrong. This program brough in so much support for local families.

My son enjoys talking with people, but so often isn’t give the chance. When asked a question he most likely won’t look at you. He’s not being rude. It is hard for him to look you in the face. He doesn’t process the information he gets from looking at you. He is listening. He’s not answering because he is processing. He is thinking. He may forget to answer because he is really thinking about the question, especially if it invokes a memory. Ask again, don’t walk away, don’t say he’s not paying attention, don’t assume he is rude. If you ask again, he probably will be able to answer immediately.

My son is amazing at sports. His gross motor skills are often beyond his age group. He can throw a ball accurately, pitching for his team at a young age. He can kick a ball with such force that you will need to duck because, again, he is accurate. Watching him play soccer is exhilarating and so much fun. He high fives teammates, cheers when someone else makes a goal, and checks on his friends when they get hurt, empathy. He can play sports and have empathy.

He typically plays forward and has an incredible kick. Whether he makes the goal, assists, or watches, he almost always cheers and high fives his teammates. 

Not one kid with autism that I know doesn’t want to do good. My son knows he is different. He struggles everyday wondering why life is easier for others. School is hard. Not academics, but the sounds, the full classroom, the pressure to answer immediately without longer processing time. Kids bumping you in the hall, sitting like sardines in an assembly, fire drills, a change of routine, trying to fit in and navigating a social world you don’t fully understand. It’s a challenge and one my son does with grace.

My son loves people, but hates large groups of people. He gets anxious trying to navigate everything, everyone, all the emotions, the facial expressions, the body language. He will step away and watch from afar. Not because he doesn’t like you, it’s because he likes you he stays. It’s because he likes you he asks if you want to throw a ball with him on the outside of the group. It’s because he likes you that he might walk on his toes and pace, he is holding himself together for you. More love.

Teen with a morning dove sitting on his hand

He saved this fledgling after being caught and played with by a cat. There were some injuries. He learned how to feed a fledgling and engage so that it could be released independent of him. Best part, one day after days of practice, "Birdy" left the coupe. At times we can catch a glimpse of Birdy enjoying the wild.

He has told me he is different; he doesn’t understand why someone is mean to him, he won’t know you are mad until you yell at him and he is in trouble. He sleeps more than kids at his age. He still naps. He needs these naps to reset. But those naps will also interfere with his social time. His anxiety shows up differently than an adults. He might have a tantrum, just as an adult with anxiety shuts down or gets moody.

If your child is friends with my child and they have questions about why he acted ‘weird’ or why he doesn’t want to do what they want to do, educate them or ask us how to educate them. Please ask me questions.

If you are interacting with my child understand he needs to process. He might not understand that his behavior upset you. He is a kid, he will make mistakes. Talk to him. Tell him. Teach him. He wants to learn. Teach him to see what he might not be able to see. He wants to know. His silence isn’t lack of caring. It’s anxiety, processing, and fear.

If you see a child in the store, in the airport, at a carnival, in the mall, at a parade, a wedding, party or other event that is struggling, DON’T tell them to discipline their child. DON’T look at them funny. DON’T roll your eyes. DON’T walk away talking loudly with your company about how “if that was my kid.” Ask, is there anything I can do to help you? Give the empathy that you expect my young child to give. If you can’t or are not comfortable asking or being supportive, that is ok. But DON’T do the aforementioned things. You don’t know the story. You don’t know the struggles. You don’t know the embarrassment that the parent may be feeling. You don’t know the rage when you hear and see everything that people are saying and doing when you are trying to save your child from the environment. I know you want me to spank my kid, yank him out of there, yell at him, tell him to grow up, punish him....What you don’t know is I have wanted to do all that too. I was raised in the same society that says that is what to do. It doesn’t work. It won’t work. It won’t teach. It won’t give my child the support he needs. It’s not behavior, it’s neurological.

We have a long journey ahead. We still have to navigate the social difficulties of middle school, pressures of high school, and the work place. We still have therapy, neurology appointments and other health concerns that need to be address.

Remember when you see a child with autism of any level...They are kind, they want to love and be loved, they are important, they have something to offer, they have goals, they, in many ways, are like you and me. Their struggle is just different than yours. Please don’t put them in a box.

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