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The Colors of My Mind on the Autism Spectrum

I don’t know how thinking is for everyone else, but for a long time I thought it was the same for them as it is for me.

My mind doesn’t stop; it spins and shifts in different directions creating webs of patterns, linked by varying hues. The demand for constant input, the never ending search for an answer and the grip of anxiety when a question arises gets steadily brighter and brighter as if it is a scream, crying out for a solution. It can’t be left unknown, wondering away in my head. To leave it is to invite regular intrusions into my mind, increasingly shrill demands that feel like an ever-growing pressure on the inside of my head trying to force its way out.

To find the answer is to connect it with the whole, allowing it to form part of the matrix and develop its own offshoots. The solution leads to more questions, thoughts and connections; the matrix gets bigger and demands more data to feed its ever growing form. Then it starts to slowly develop edges. The myriad of colors and connections that have been shifting, adding and re-forming are quieting now. I can see how the pattern works, where the shapes, colors and connectors interface and meld to form the whole. I have my solution, at least for now. At least until it starts again.

This is how thinking works for me — the constant whir, with a seemingly endless thirst for variables and information. The more interesting or exciting the topic, the more rapidly it builds and the brighter the pattern is, with many more strands that form and throw out new questions, new directions and new patterns. This hasn’t always been fun. I’m not good at finding ways to explain my thinking to others. I make connections, go in different directions and form patterns and color bonds that make sense to me. To others I think it can seem random, like I’m making huge leaps that make no sense or I’ve gone off in a completely different direction. Sometimes people think I’ve just started talking about something else.

How can we be having the same conversation but not be in the same place? The patterns, matrix and color blends we’ve created must at least be similar. I may not think the same way as most people; sure there are, as far as I can tell, similarities, but it’s not the same. The closest thing I have found is when I watch people brainstorm with spider diagrams. If you imagine that with multiple blending colors, in three dimensions and adding multiple strands at once, that’s closer to how I think.

I hated it for so long. Not because it was different — it made it possible for me to make links and connections others didn’t. I would come up with ideas that never occurred to most people and found links and similarities between theories that helped me understand processes and develop new theories. Not that I’m always right; I am often not. The hatred didn’t stem from the difficulties I had communicating thoughts to others or the inability to hold them inside. It came from the fact it never stopped; it was constant. I never felt I had peace. I was exhausted mentally and physically; there was just to much information and I couldn’t make sense of it all. It was overwhelming.

Sleep was something that only came when my body physically couldn’t keep going. It just shut down, but not before hours of lying in bed trying to find ways of quieting my mind. This often meant that I slept for only a few hours a night, and I gave up going to bed at a reasonable time, reasoning that there was no point if I wasn’t going to be able to sleep. This went on for years and I hated it. Despite all the positives, I just wanted it to stop. I wanted to sleep.

As I moved along my journey to diagnosis, I started to assume this thinking was my Aspie brain at work. If this was the case, how could I get respite? As I came to understand other parts of myself it eased a little, and I would sleep more, but usually at the wrong time of day. My sofa was and is my friend. Then something happened, and it led to one of the most terrifying days of my life.

The day itself was fairly average; it was a warm, reasonably bright and pleasant, fairly typical English day in June. I had been struggling with tendonitis in both wrists for months, was experiencing a reasonable amount of pain and had both wrists in supports all the time. Pain killers helped, but I didn’t like taking so many for so long and it wasn’t making things better. The doctor had an idea, amitriptyline. It’s a drug that is often used to treat anxiety and depression, but also chronic pain. That morning I took it for the first and last time. I may have felt less pain, but this was inconsequential as it also appeared to turn everything off. I had dreamed of the day the whirring would stop, and now it had. But for me it was terrifying. I imagine this is what it would be like to suddenly lose one of your senses.

My brain didn’t work; the patterns wouldn’t form, the colors had gone and I had to think about thinking. There was no noise in my head, just nothingness in the huge space that once bustled and demand more and input, always seeking to grow and find new patterns. Now it sat quiet, and that was it. I was gone.

I’ve come a long way since that day. I have grown and learned new ways of finding respite from the information overload. Stimming is right at the top of that list, but so is not fighting who I am or wishing away a part of myself. Now my brain whirs, and so does my body. They work together, and as one I find peace.

Aspie and Proud.

Editor’s note: Please see a doctor before starting or stopping a medication.

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My Autistic Meltdowns Are Not 'Tantrums'

Sometimes I have meltdowns. A meltdown is when an Autistic individual has intense emotions and can have a hard time controlling them. An Autistic meltdown can be triggered by different things. My triggers for Autistic meltdowns are anxiety, sensory overload and frustration. I am learning to read the signs of a meltdown coming on. This is what a meltdown can feel like for me.

My chest is tight, I’m crying and tears are dripping down my face. I feel like I can’t breathe very easily. I keep crying for a while. Slowly, the meltdown subsides and I start to feel better.

My meltdowns are not tantrums. Sometimes tantrums might be used to get attention, but my meltdowns come on without me thinking about it. I’m not planning out meltdowns in my head.

There may be days that I am more at risk for a meltdown. If I am having a bad day, my risk for a meltdown goes up. I find that if I feel a meltdown coming on, it is best to go to my bedroom. I haven’t had a meltdown out in public, but I know I would need a safe and quiet place to go to recover from the meltdown. This is why my Autistic meltdowns are not “tantrums.”

Follow this journey on Ausomely Autistic.

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The Letters That Enrich My Life on the Autism Spectrum

Many living on the autism spectrum have a passion. Mine is writing. I did some of it in high school, but I didn’t launch into it until I moved away from my home state. Back when I was living on the East Coast, I was the “lone wolf” in the family; thus, I had people back home to write to. I started with writing my mom on a weekly basis on a typewriter, then on a daily basis when a computer and e-mail came into my life.
My mom’s passion was not letter writing. She would sometimes mention she got a letter from her Aunt Annie, her Dad’s sister, and was late in writing her back. Annie lived in Salem, Illinois, with her daughter Trecia. Like myself, Annie had have a passion for writing. An urge came into my heart to write Annie myself, even though I had no recollection of meeting her.  My only memory of her was a photograph my Grandpa Charlie had of his little sister, among other family photos, in a silver picture frame that hung in a bedroom. I could picture the woman with the dark hair and beautiful dress surrounded by a couple of small children. Only God knew when I was a little girl looking up at the photograph, I would one day grow up to be that woman’s “Sunshine.”
At first I resisted the notion of writing Annie. I came up with excuses such as she probably didn’t remember me. Or, she might think it odd of me to write her. Silly excuses, I know. But a fear of rejection can be a strong one for those living on the spectrum to overcome. Since the urge to write only got stronger, I gave in since I did need sleep at night. I wrote my letter of introduction and was surprised when my Great Aunt Annie wrote back so soon. And she actually wanted me to write back. Imagine that, I thought!
Years went by and without fail, Annie got a letter from me every week. For me, living on the spectrum includes an obedience to “routine.” It was so routine when I put the letter in the mail that Annie would know which day to expect a letter from her grandniece. Annie gave me the nickname “Sunshine,” because my letters cheered her up and even made her smile or laugh when arthritis, whom she referred to as “Arthur,” would unmercifully torment her joints.
Annie came down with the flu, and it soon robbed her of being able to write like she used to. She begged me to not stop writing. Of course, I could not stop writing Annie. It was a strange, unusual feeling for me to be needed in such a way. I didn’t want to let her down.
She passed away at the age of 89. My relationship with her was unlike any other in my life. I never had a one-on-one face meeting with her, but she knew me better than most. She had my letters filled with my words and thoughts. Her daughter still has them, and I still have Annie’s.  I don’t pull them out, but I don’t dare throw them away. If I need to read a love letter, I know where to find one.
Shortly after Annie’s passing, her daughter asked me to be her pen pal. Unlike Annie, she preferred e-mail instead of snail mail, and that suit me just fine. I gained a new nickname of “Lil’ Sweetie,” and that suit me fine too. We are cousins and dear friends. I’ve never met my mother’s first cousin, but I don’t have to in order to know her and for her to know me. The pen is, after all, mightier than the sword.
I know all too well that one can be close to someone through words shared, even though they may live thousands of miles apart. The story of Annie and I is one among millions that could be told of how a simple thing as a letter can give strength to the weak, smiles to the hurt, and attention to the lonely.
If I were to make a list of the top 10 people who had the most effect on my life, Annie Charles and my cousin Trecia would be near the top. I say this at 58; however, I think they’d still be high on the list if I were to live to be 89.
I learned only recently I have been living on the spectrum. It was a diagnosis that explained so much of what was behind how I feel, think, and act. I do wonder what life would be like now if I were not autistic. Would I have a husband? Children? A whole host of friends? I’ll never know. But one thing I’m sure of is that I wouldn’t have been Annie’s Sunshine or Trecia’s Lil’ Sweetie if I were not living on the spectrum.

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The Real Reason People Are Shocked to Learn I'm Autistic

When I tell people I’m on the autism spectrum, the reaction I most commonly receive is disbelief. In the past, people have responded by saying things like, “Wow! I would’ve never guessed!” or “Really? Are you sure?”

I believe the reason people are so shocked to find out I’m autistic is because I don’t fit into their stereotypical view of a person with a disability. I’m tall, thin and blonde. I have brown eyes and my hair is long and straight. The fact that I am female means I’m less likely to have an autism diagnosis, however, I do indeed have a professional diagnosis. Despite the fact that I don’t “look” autistic.

What does an autistic person look like anyways? The answer is, they look like everyone else. Autistic people come from all ethnic backgrounds, in every shape and size. However, let’s address the stereotype image.

When we ask society what an autistic person looks like, we may get a different answer. The person much of society pictures is often a person with short hair who often wears baggy athletic clothes. The person that society imagines is often nonverbal or limited in speech. This person “doesn’t like to be around people.”

This is the stereotype many people may imagine when they think of an autistic person. It is incorrect, and harmful. Autistic people, like everyone else, can have an endless variety of wardrobe, hair styles and social preferences.

To further address this stereotypical image, the reason some autistics prefer shorter hair and loose clothing is due to sensory difficulties. As the saying goes, “Once you’ve met one autistic person, you’ve met one autistic person.” No two are exactly alike! Meaning that just because one person may dislike brushing and keeping up with long hair doesn’t mean another wouldn’t mind. Some people like loose fitting clothing, while others like their clothes to fit tightly.

The diagnostic criteria has expanded to include people who are not verbally limited. So next time you hear about someone’s autism diagnosis, please don’t react with shock or disbelief. Instead, acknowledge and affirm their statement.

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The Difference Between a Tantrum and a Meltdown

I’m not a perfect mother. I do my best, but quite often I fall short — like most every other mother who is trying to balance parenting, a career, and every other aspect of adult life. Yet I’m also the parent of a child on the autism spectrum. Some days I forget that, simply because this life is the only one I’ve ever known. I adore my two beautiful, brilliant children who deal daily with the challenges that can accompany being on the autism spectrum. I’m so proud of what they’ve accomplished so far, and I’m excited about what they are destined to do in the future. There are days when I don’t realize there is anything different about our challenges than those of any other family.

Today, however, isn’t one of those days.

We all have ideas as to what we plan to do on the weekends. Those plans might include doing chores, like dishes or laundry. They might include going to visit a friend, seeing a movie, going out to dinner, or getting some shopping done.

As for me, I planned on getting some fiction writing done after getting some cleaning out of the way. Things aren’t going as planned.

While cleaning up the kitchen, I heard my daughter Gerri Anne begin to fuss in the next room. She was having trouble with a game she was playing. At first, I thought I’d resolved her problem, so I walked away and continued what I was doing. She started to get upset again, this time crying and swatting at me in frustration.

Now, to the casual observer, this might be considered a tantrum.

It’s not.

It’s the beginning of a meltdown.

A tantrum is often about a child not getting their way. They may be angry about a specific situation. They often know why they are angry and they might choose to deal with it by acting out. A tantrum can often be easily and quickly managed with parental discipline and intervention.

A meltdown is entirely different. Now, I don’t have a PhD, so I’m not going to give you the textbook definition of a meltdown. I’m going to give you my definition as a parent of a child on the spectrum. A meltdown happens when a child with autism spectrum disorder is experiencing an emotion and/or situation they can no longer control or process through their normal means of dealing with the experience.

When a meltdown occurs, a child cannot manage the onslaught of emotions and sensations that come along with it. They might begin to feel frustrated that they can’t fix the situation. Then they may become angry and confused, because in addition to not being able to fix it, they also can’t control the way they feel about it. They can’t calm down, so they may cry. They may scream. They may hit, because they want help, but they can’t verbally express what their exact needs are. They might not know how to ask for help, or they don’t know how to calm themselves down enough to form a cohesive thought so they can ask for that help.

Discipline isn’t going to help in this situation, even though that might be the automatic response of many parents.

In my experience, what can help is getting the child to a place where they can begin to calm down enough to manage all the external and internal stimulation that accompanies a meltdown. I’ve found you need to get them to focus on something other than what started the meltdown in the first place. Some ideas include taking the child to a quiet room, wrapping them up in their favorite blanket, talking to them in a quiet voice, helping them count down from 20 or 10, etc.

I’ve found that a combination of all of these works with Gerri. It’s not enough to simply distract her or remove what started the meltdown in the first place. First, she has to know I’m calm in order to help herself calm down. If I become upset, that only makes things worse.

She needs to focus on something new, so today I spoke to her a in quiet, almost whispered voice. I reassured her I was going to help her, but she had to focus on me. I assured her she has the power to calm down, and I would help her get there. Once she listened to me, I held her and rubbed her back. (Always ask a child if they want to be held. Sometimes the sensation of being touched or pulled toward someone can only makes things worse.) I wiped her tears away and made a little joke in the process. I changed her shirt and told her that wearing her palm tree T-shirt would help her feel better because “palm trees grow in sunny, happy places, and sunny, happy places like sunny, happy faces.” She smiled. I wiped away the rest of her tears. I then told her we were going to count down from 20 and that she had to help me. I said once we reached one, she would blast off in the rocket and would feel better.

I held her, and as we counted down from 20, I began to shake like a rocket. When we got to one, I said, “Blast off!” and she jumped off my lap. I asked her if she felt better, and she said, “Better.”

I’m not an expert. I didn’t learn this through reading a book. Like many parents, I learned this through trial and error. It can be a difficult road, and it’s different for every child. I’ve found you have to be creative. You have to adapt and do so quickly. There are so many techniques and theories out there. You have to experiment and find what works best for your child.

My advice is this:

  • Read what you can, when you can.
  • Educate yourself as much as possible.
  • Get involved in your child’s world if you ever expect them to be able to function in yours.
  • Be patient: Parenting isn’t meant to be easy.
  • But the most important advice of all — love them, because that’s what they need more than anything else: love.

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My Answer to the Question, ‘How Does Autism Affect Your Life?’

Bright lights, loud noises, my breath catches in my chest. I force it out, gasp it back in.

People everywhere, every one of them a threat to me. I feel the panic rising, getting stronger. Someone bumps into me and my heart rate jumps a thousand feet.

You can get through. You’ve done this before. It doesn’t have to end in panic. Just get though. Just get through. Just get through.

I can’t see. I see too much. I hear everything, the noises constantly growing louder. I can’t drown then out. My own heartbeat is agony; it’s so loud. My body isn’t responding. I try to walk to somewhere I can sit down; somewhere I can be alone.

Mom, Dad, where are you? I need you. I don’t want to do this. I’m alone and so scared. Help me. I can feel tears coming. I try to scream, but the most I can manage is gasping. The world is spinning. I feel myself falling, but everything is in slow motion. I sense my body hit the floor, but I don’t feel it. I don’t feel anything.

Nothing but panic.

I can’t see. I gasp in, in, in, in, but can’t breathe out. I feel hot tears streaming down my temples. Everything is spinning. I am screaming, but I can’t hear myself. I am aware of only one thought. I feel like I am going to die.

As a 17-year-old with autism and generalized anxiety disorder, every day is difficult, but some more than others. This is something I was born with. My life is hard, but rewarding.

I am an introvert, and what I call “me time” is necessary to my ability to function.

One of the questions I am often asked is, “How does autism affect your life?” 

My answer? 

I have a hard time in any public place, whether it’s a mall or the doctor’s.

Loud noises are extremely painful. I not only hear the noise, I feel the sound waves hitting my eardrums.

Florescent lights are a unique kind of torture. They flicker, not enough for most people to see, but to me, it feels like someone is hammering my eyes from inside my skull.

I hate it when people touch me, especially on my skin. The feel of someone touching my skin almost always feels so cold it burns me.

I have a large “personal bubble.” I don’t like people I don’t know well within five or six feet of me.

I can read people well, and most people are an open book to me. I can’t really explain it. It’s like trying to explain why you’re good at science or physics. It’s just the way your brain is wired.

I love animals, most of all horses and dogs. They are what I connect with best. I believe I can tell what a horse is thinking and if it is feeling pain anywhere in its body. I can open myself up to understand what is going on in their mind. I have been called a horse whisperer several times. I know that’s what it probably seems like to someone watching me with a horse. I wouldn’t know — I just know that when I’m with a horse, or a dog, everything feels right. Everything is in place, and I am completely calm. It’s the only time in my life when I have no anxiety. It’s just perfect.

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