What my 11 year old Autistic Daughter would like you to know.

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Goofing off at a Park. / Photo by KidZond.

 

Author (Father’s) Note: I’ve been trying for the past couple of weeks to coax out of Alexis how she feels about being autistic. What she wants people to know about her. It hasn’t been easy, nor direct. But although this is not her direct language, it is my approximation of how she feels, and what she wants others to know.

 

First off, I don’t like the term ‘Autistic’. I don’t want to be seen as different than other children. But I am very aware I am. When I am called autistic, or told that I have autism, that is just another reminder that I am different, and who wants to be different? Not me.

 

I have emotions, plenty of them. Just like you. They are inside of me. But the difference is this. I have trouble expressing them, or when I do? I express them the wrong way. Most kids my age don’t really care. We are out to have fun. Adults however get lost by this, they don’t seem to want to take the time to let me ‘translate’ my emotions. Despite what society likes to think of me, or others like me, we are not ’emotionless robots’. We feel, but those feelings? They are like a whole other language for us, and we have to translate them in our mind. Speaking to me sometimes is like speaking to someone who has another native tongue, and they have to find the right English word to tell you what they want. Be patient please.

 

I lie. But not for the same reasons most kids lie. Well, not always. I lie to keep emotional stress away from me. When I spill something, I say it wasn’t me. It is not to avoid guilt, but to avoid the emotions connected to the guilt. We you do something bad, most people feel guilty about it, and there are a lot of emotions attached to it. For most kids, like my brother, he may tear up, apologize several time, and feel bad about it. Those emotions get lost in translation for me. It is just so hard to find a way to say ‘sorry’, so I deflect it by saying ‘wasn’t me’.

 

I have an excellent memory, better than yours I bet. However my memory is different is some ways. Recall can take a moment. I don’t want to be wrong. So, in school? I take time to answer questions, which for some teachers, it can be frustrating for them. Also, dealing with adults in general. One thing about my memory that may surprise you, I recall things from the past like they happened yesterday. Emotions are attached to memories, and when I remember good things? I smile and laugh about it. It’s the bad memories that are the problem. If someone is mean to me? Or upsets me? I remember that about them. They could have done the mean thing to me years ago, but when I see them? I remember it like yesterday. I tend to avoid people who have upset me in the past. I can forgive, but it takes me much longer than most.

 

Simple things bother me. I don’t like loud unexpected noises. I don’t like automatic flush toilets. Or air hand dryers. Loud music can bother me sometimes. Crowds too. Expecting a response from me is annoying. Like “Please and Thank You” Why do you use them? I really don’t see a need. If I give you half my donut, you don’t have to tell me Thanks. I know you are Thankful. You use a lot of frivolous words you know.

 

And about frivolous words, what is with that? My dad said to me one day to get dressed now, because we are going out later, that way I could Kill Two Birds with One Stone. I had to ask him why we needed to kill birds with a rock? He told me it was an expression. I’m not always fond of expressions. I like it when people say what they mean, not use confusing words that do not make sense. And why is Pink a girl color? And Blue a boy color? Society has a lot of rules that just don’t make sense to me.

 

I have issues with touch, hearing, sight. These senses are heighten in me. So, I wear comfy clothing, because clothes you expect me to wear? Okay fine, put on a burlap sack for a day and tell me how that feels, now do you understand my fondness for pajamas? My hair is mess a lot, because brushing it? It literally hurts. My digestive tract can cause me problems, and embarrassment, an emotion I dread just as much as guilt. I have avoided school in the past because I was worried I would have an accident at school. I am very aware of how that would have gone over.

 

About school. I don’t go anymore. I do schooling online, and will go to a smaller private school this coming Fall. Why? Well, think of it this way. When I would go to my school it would become too noisy, too busy for me. I would get anxious, and that would stress me out. If I get too stressed out? I have to shut down for a while. It is called an Autistic Cycle. I can literally forget everything for a while till my brain ‘reboots’. Emotional stress does this to me. School to me was like having someone in the background drag their nails down a chalkboard. This sound would be far away at first, but by the end of the day? Right next to me. Yet I like to think I am still go to my old school, because not going to my old school? Makes me different. I hate being different.

 

Most of all, the one thing I think you should know about me is this. I am me. I am an individual. Everyone is different…so my father keeps telling me…and as much as I hate being different? I am, I know I am. And I don’t like this about myself. I just want people to treat me like they treat everyone else. Yes, I may not behave as you expect me to behave. My emotions are hard for me to translate. Be patient, as you would with anyone else. I am working on adapting to societies expectations of me. I try, hard as it is, I try. But, could you for once, maybe adapt to my expectations? Give me the space I need to become the individual I was meant to be? Give me time to figure out this strange emotionally charged world you live in? This is a strange world for me, and I work at adapting to it everyday. My parents tells me I am on a spectrum, that there isn’t a ‘one size fits all’ with autism. That there are many on this spectrum, and each of us are an individual. And should be treated as such.

 

 

This is Austin. He’s Autistic, not Broken.

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Who wouldn’t want a Rainbow cookie? / Photo by KidZond.

 

For Spring Break we took a family vacation to the Mall of America. It was nice to get out-of-town and walk around, seeing the sights, riding the roller coasters, and being conned into zip lining by my 8-year-old son.

It was on our first day at our hotel that we met Austin and his Mother. We would see them only once, and not for the rest of our trip. How we met during breakfast was simple. Austin, around my son’s age, was wearing the same pajamas as my son. A cute little red-haired boy who came up to our table to smile at my son, delighted they accidentally dressed as ‘twins’.

Austin did not speak to us, just smiled. His mother came up to us, put her hand on her son’s shoulder and spoke these words.

 

This is Austin. He’s Autistic, not broken.

 

I said hello, and then it hit me what she said. It was cute, catchy, and sounded like a mantra she had repeated often. And although I only met Austin and his Mother once on that trip, I have thought about what she said, that mantra. Autistic, not Broken.

I went though a lot emotions thinking about this mantra, from finding it mildly offensive. I never said your kid was broken lady! to inspired. What a great way to introduce autism to others! Yet I couldn’t get over the sadness of it all.

See my youngest daughter is High Functioning Autistic. I never told this to Austin’s mother. I didn’t have a chance. I have never thought my daughter was broken.

 

Then again, maybe I have.

 

As hard as it is to admit. There are many times I wish my daughter was not Autistic. Sometimes this wish is selfishness on my part, most it is for her. I absolutely HATE the fact the world will be a challenge for her. That people will look down at her, ignore her, and ultimately categorize her into a slot that they can ignore.

The endless explanations to family, friends, strangers, about why she behaves this way or that. Or choices we are forced to make on behalf of our daughter that people are confused by. The advice that is more condemnation than support. That you just have to smile through, and nod, while internally you are screaming.

The many private things we do not discuss. The bathroom issues, the sensitivity issues, the Autistic Cycles she gets caught in. All those things that are a challenge to my family, to her, and our choice not to broadcast it.  They don’t understand the why’s. Even when you have explained it a thousand times.

Because Autism is a Wicked Little Tailor that fashions a suit for each individual, those of us who are A-Neural Typical can easily get lost by autistic behavior. Is the kid rude? Is she dumb? Wow she’s smart! Is she top of her class? Why is her hair messy? It’s 3 pm, why is she in pajama’s?

The questions, looks, attitudes abound. You as a parent navigate these perilous conversations and hope the adult will not be an ass to your kid. It doesn’t always turn out that way.

Sometimes the world surprises you. I was surprised at the Mall of America, at the Sea Life exhibit. If you have the chance, this is a wonderful place to visit. You can see an array of marine life, and even touch some.

One part of this exhibit is an acrylic tunnel you walk through. It takes you though 300 feet of the exhibit showcasing the aquatic life native to Minnesota, the Amazon, Rainbow reef and mythical Atlantis. You literally walk under the water and see the wildlife swimming around and over you. My son loved it, was beyond thrilled to go through the tunnel.

My daughter on the other hand, stopped dead at the entrance. I tried to coax her to go in just a little bit, but she was not having it. I did my best to alleviate her fears, but still she would not go. I let her mother and brother walk on as I tried to decide what to do.

Then the wonderful happened. A Sea Life worker noticed my dilemma. She came up to us and asked if we needed help. I told her that my daughter was High Functioning Autistic and seemed to have an issue with the tunnel.

The day before I couldn’t get her off the roller coasters, so I was a bit shock at her balking at the tunnel. Plus she is an animal lover extraordinaire, why this bothered her? She still hasn’t told me why. But it did, and the Sea Life worker noticed, and knew what to do.

Opening a side door, the worker walked us a short distance to another door and we bypassed the tunnel. I got the impression the worker had done this before, and that she had done this before for Autistics.

I was incredibly thankful to the worker. To the whole of Mall of America, which is sensory / anxiety friendly place.

It was a moment like that one, that gave me hope that others do understand. That they do get what Austin’s mother said, and now I do too. That with awareness comes compassion, with awareness comes understanding, and ultimately, with awareness comes knowledge that we are all individuals, we are all human beings deserving of respect.

This is National Autistic Awareness Month. 

And my Daughter is Alexis, she’s Autistic, not Broken.