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

20190519_180630.jpg

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.

 

 

Life without Glasses.

20181002_205049

Photo by KidZond.

 

If you wear glasses, like myself, you have to be a little happy about living in the 21st century. For one, there are so many styles to choose from. You don’t have to have glass lenses either, you can opt for lighter plastic lenses. Heck, you don’t even need to wear glasses, just use contact lenses. Or better yet, surgery to correct your vision. It’s rather nice actually living in these times.

If you have never worn glasses, never had need of them, well…you don’t know do you? Okay so you have tried them on, a friend or relatives pair. Looked around and wondered how in the blue blazes do people see out of them? Wear them long enough, you’ll get a headache. Then, you’ll probably laugh, hand them back, and think to yourself,  “Boy, glad I don’t need glasses!”

You are lucky if you don’t have to wear glasses. I am lucky because I can easily correct my flawed vision by putting my glasses on. When I don’t put them on, the world is weird to me. Blurry, distances are a little skewed. I have to hold things up close to read since I also wear bifocals. Very frustrating when I misplace my glasses.

If, for some odd reason, I lost my glasses and the ability to replace them, I would be in a pickle. I would have to go through the rest of my life struggling to adapt to my world. Having to make judgements about distances, objects, all sorts of things. I would do my best to find a substitute for my glasses, have to learn tricks to help me with my predicament. It would be frustrating, annoying beyond belief, my own personal hell.

Of course people would understand. They would know that I had lost my glasses, and that I could never attain another pair. They would have compassion and empathy to my plight.

What if they didn’t? What if they thought that glasses were a myth? Something some egghead doctor had made up? What if they had never seen or heard of glasses before? That when I explain I can’t see as far as they can, they laugh it off, or call me silly? Tell me I will grow out of it, or just to knock off being silly.

What if they don’t know, or understand, that I fear objects coming toward me because I can’t tell what exactly is approaching me. Is it a dog? or a wolf? maybe it is a bear.

People with chronic conditions know this feeling of disbelief all too well. They know people who are dismissive of conditions that are not physically apparent. As a parent of a High Functioning Autistic child, I know this feeling too.

People believe I baby my daughter too much, or make excuses for her eccentric behavior. They think it is bad parenting, or lack of discipline. They make comments that I coddle my daughter too much, or let her get away with her antics.

As always, I have a flash of anger that I struggle to control. My parental defenses fire up, and I have to watch my tongue, or else I will make the problem worse. All this, while not backing down and accepting their beratement, and doing my best to educate.

Yet, some still believe that glasses are a myth, they always will. For they are lucky, and will never have to deal with a life without glasses.

Take this stick and swallow your feelings.

20180724_084650

A diagram showing the difference in Male/Female arguments. / Illustration by KidZond – don’t laugh.

 

It was one of those conversations that stick with you. I was in my late twenties, over at a friends, who was in a rocky relationship with his spouse. We were discussing relationships and he drew a diagram like the one above. A very simply diagram.

The purpose of the diagram was to explain how men and women argue, or discuss issues that affect their relationship. Men tend to argue linear. They build on point A to point B, to point C and so on. Women do the same, yet point E may be vitally related to point B, and even point B may involve point Q. Women’s arguments tend to be interconnected.

I was amazed by this revelation, it made so much sense to me at the time. Of course, this diagram is a very broad generalization. Not all men argue in a linear fashion, nor do all women build their arguments like a spiderweb. I’ve often wondered what the marriage therapist was trying to tell my friend and his spouse.

I will say, that over the years, the idea that men and woman look at things differently has stuck with me. I have had discussions with women in my life that I saw the spiderweb, knew I was going to lose the argument and eventually be rolled up in a silken web only to be devoured later. I have also had these conversations with men, usually managers, who find ways to make sure it is your fault.

For the most part, I don’t take credence in the diagram anymore, it’s cute, a generalization, but not accurate.

 

Inside Out

 

Yet the other day the diagram popped back into my head. I had a different perspective on it. One I am still pondering about.

We were at home watching the movie Inside Out again. If you never have seen this 2015 Disney/Pixar movie it is a much watch film. The story revolves around a tween girl named Riley that is uprooted by her fathers new job. They move from Minnesota to San Francisco California. What makes this simple premise work is the little people inside Riley’s head. Her emotions that live inside her head and operate the control room.  For adults, there are a myriad of little gems in the story that will elicit guffaws. From the Train of Thought, to memory of a jingle that just won’t go away. An earworm from Hades.

But what really caught my eye were the Islands. Called the Islands of Personality in the film, these little places were meaningful things in Riley’s life that became so special they have their own place (island) in Riley’s mind. Each island is connected to Headquarters (control room) and the ‘little voices’ inside Riley’s head can look out on the Islands of Personalities. I noticed that the islands were connected by a straight line, like a conduit or synapse to headquarters.

Looking at those connections, and watching my autistic daughter giggle at the movie, made me think about something she has recently started to say. And I wondered, are those connections really a straight line of thought with her?

 

Swallow your feelings

 

About a week ago, my daughter handed me a small stick and told me to “take this stick and swallow your feelings”. She giggled, and so did my son. (I did not swallow the stick, just so you know.) I did asked where this phrase came from. Did it come from a cartoon? A video game? A friend. My son told me that Alexis just said it. She made it up he said. Honestly I am not sure that is true, but wherever it came from, she had taken a liking to the phrase.

She used this phrase most of the week, then on Friday we all sat down in the evening to watch a movie, Inside Out.

That is when the old diagram and the conduits to the Islands of Personalities started to merge in my mind.

What you will find often enough with young autistics, is that when you ask them a question, there is a delay in response. In school, this can sometimes be seen as not knowing the answer to a particular question, but in reality, it is processing time. Autistics seem to have a delayed response. This, I should note, is the appearance to us Neural Typical people. Not necessarily what is going on inside their heads.

With High Functioning Autism, I have found more and more there is scant research and information as to how they think. Most of the research is devoted to making them behave like us, conformity. While that isn’t wholly a bad concept, I personally think it’s a little off. Personally, I would rather they would work with Translation than Conformity.

Translation works like this. My daughter has emotions. She isn’t dead inside. In fact she is vibrant with emotions. She just can’t get them out for you to see. Or when she does, she selects the wrong one. Her islands of personality do not have straight paths, in fact, they are a spiderweb of paths. She has to sort through the tangle web to find the correct response. Sometimes, the paths get crossed, or intertwined. Yet while the character Riley from the movie had Emotions that controlled her from Headquarters via a console, in Alexis’ case, the console is a little glitchy. She may select one emotion, yet another comes up. Much to her chagrin.

These are the things I work on with her. Helping her learn what is the ‘normal’ response to a situation. How to deal with emotionally charged moments, and to seek out the proper response. I don’t force her, I guide her. I ask questions, and if the response is incorrect to what society expects, I do my best to explain. It is not a perfect method, it is time-consuming and well, frustrating at times for both of us.

The common method now is conformity. Basically taking away and giving, to make an autistic conform to societal rules. This method may work better for some, I’m not knocking it, have used it to a degree, yet I don’t feel the carrot and stick method works that well with HFA. They will outsmart you, and use it against you.

 

Spiderwebs

 

It was the combination of the movie, and my old friends diagram, and her new catchphrase that gave me a new insight into my daughters mind. What exactly the stick represents, I really am not sure. Yet swallowing one’s feelings? I have a hunch that is how she sees our world. That maybe, more often than not, she has to swallow her feelings rather than express them. Because expressing her feelings is hard, yet swallowing them? That is easy for her. Better to leave them inside rather than select the wrong emotion.

Yet, it comes with a price. Like the stick in the metaphor, to swallow a stick would be a hard thing to do, getting stuck in one’s throat, tasting nasty and dry. Leaving you with a bad taste, and a sore throat. Emotions, and our ability to express them correctly, is hard enough for those of us that do not fall into the Autistic Spectrum. For autistics, the wrong selection could be catastrophic. So, swallowing the stick is sometimes better than selecting the wrong emotion.

 

 

…Not Judgement.

20180421_194044.jpg

A sign posted on an elementary school wall.

 

Last week when I picked up my 5-year-old niece from her Pre-K class I passed a wall plastered with pictures and stories. In the center was this sign.

Autism is one word trying to describe millions of stories. and underneath, offer support, not judgement.

This may seem sappy, but the sign, the wall, what had been going on in my life at that moment, hit me hard. I did my best to hold it together and walked on to pick up my niece. Walking through a crowded hallway of parents and overly excited 4 to 5 year olds, who jostling each other for a turn at the drinking fountain. I signed my niece out, lead her out of the school, stopping to snap a picture of the sign. Then I thought about writing this blog. But I didn’t write. I thought about it for nearly a week.

I fully feel the support. From friends, family, school teachers and professionals who help us with Alexis’ Autism. It is a wonderful feeling, and I am truly grateful.

Yet at times, I feel the judgement. For many, Autism is just an unknown. They look at it from the outside and see…well they see a new car. See, I thought about the sign for nearly a week, and found an analogy that made sense.

 

Analogy Time!

 

Lets say, for the sake of analogies, Alexis is a new car. Snazzy, looks great on the outside. Sunroof, all the new fangled bells and whistles. I drive this car everyday. So I know this car well.

On occasion I give people rides. They like my new car, say it works like every other new car they know, looks like a normal car to them too. But they don’t drive it everyday like I do.

See, every once in a while, my navigation system won’t talk to me. It is very frustrating. I really need it to work sometime, but it doesn’t some days. Selective Mutism.

Then the fuel system doesn’t work, and my car vapor locks on me. Just stops.  Getting it to work again can take days. Sometimes, I have to take it into the shop. Gastrointestinal issues.

The sun roof is stubborn too. It will open, but refuses to close. Hangs up and the navigation system complains it hurts too much to close. Tactile Issues, Hair.

But everyone sees this awesome car on the outside, and they don’t understand the issues I have with it. I can tell them, and they will listen, but then they look at my new car, and shake their heads at me.

“It’s fine, what are you talking about. Can I have a ride?” They ask.

“Sorry, not today, the fuel system is backed up and the navigation system quit talking to me about it. Sunroof needs an adjustment too.” I tell them.

“You know? You complain about that car too much. It’s fine, you just need to drive it like everyone else who owns a car like that. You probably don’t know how to operate it properly, it looks just fine to me!” I hear. And all I can do is sigh.

Silly as this analogy is, unfortunately it is accurate.

Alexis has issues that come with Autism. Even as high functioning as she is, there are still issues that seem to baffle people.

In her case, Autism is expressed by extreme anxiety. Yet this anxiety is quirky. Things that freak other people out? Like roller coasters? She’s fine with them.

She loves roller coasters.

Yet a word, a phrase, a look can push her anxiety levels to nearly catastrophic levels. She will go mute, she will lash out, she make odd sounds and nervous tics. Then she will become constipated due to her anxiety. Which, a little TMI, becomes a nightmare to deal with. From as little as going through ten pairs of undergarments a day, to doctors visits when it gets severe.

There is also the impression that she needs to learn to behave like other children. Or that this is just a phase she will just grow out of. As if this is a cold she will shake, and I am overreacting.

She will never behave like other children, she will not grow out of it.

She will learn to adjust to our world. Find ways to cope with stresses that plague her now. She will grow, learn, become a productive adult. In her own way. I am so very thankful she will. Other who have autism, are not so lucky.

I don’t doubt her future successes, yet right now she is (and we are) in the adjustment part. Working on routines to keep life on an even keel for her. Because at this point, routines are important for her, and difficult to keep in the busy, fast paced, modern life.

I call Autism The Wicked Little Tailor, because it is. Autism truly is one word to describe Millions of stories. Each person whom it touches, it does so in its own unique way. No two autistics are alike. Each person wears their own little suit of autism, and has to cope with it.

Those of us who are the caregivers, we have to not only help them, but be an advocate for them. Do our best to teach others.

And honestly? It sucks sometimes. Teaching others. They would rather judge than listen.

Because to them, the car is new and shiny, it should work like every other car its age. They are only the occasional rider, they don’t drive it everyday like I do.