I had an idea.

Parents ask me questions, which I don’t mind at all. Some call out of the blue and others during conversations while they have questions about choosing a weighted blanket. Some of them spark new blog posts, and the rest live with me.

So, I decided to start regular conference calls named Autism Community Conversations.

If you do take part, keep in mind that I do not have all the answers for your child. I know my inner experience and how I have dealt with the world around me, the good and the bad. How I have learned and developed over the years is important, I think, since all people grow and change over the years, so autistic people are no exception.

Mandi, my Community Outreach Coordinator, is the super social person at my company. A job where she is talking with people by phone and email all day is her idea of great fun. In the box below, you can sign up to receive notices of upcoming calls and summaries of what the group of us have discovered. (I see a lot of blog writing in my future.)

Mandi can answer questions about the conference calls or take questions in advance at 612-644-9352 or at Calls@CozyCalm.com.

Email Marketing You Can Trust

“Absolutely be yourself. We are all extraordinary, wonderful people.” It’s 1:00 a.m. as I am watching this video and my eyes area tearing up. I have worked so hard to get myself to where I am. I have a strong relationship, a business, three cats, two children, two step children, and believe me all of that is not easy when you have autism.

If you have autism, watch and/or listen to this video. If you don’t have autism, regardless of functioning level, don’t hold your autistic child, spouse, or family member back. They will metaphorically fall down and bruise their knees, but that is normal, quite normal. So, fall down and see how much higher you can go.

Has it been easy for me? No. Flat out, No. Am I stronger for it, better for it, feeling better about myself for it? Hell yeah!

I read a book a gazillion years ago about a person who became blind. At the blind school, the instructor said to the student that there was a sharp corner to watch out for in the main area. The student asked why they just didn’t pad it. The instructor replied that the world doesn’t cushion us from every possible hurt.

At Granny’s I spent a lot of time just wandering off being myself and being confused as to why people were doing as they did–like talking so much about the obvious or for no reason I could gather.  I would go in the living room and play the organ or watch “Hockey Night in Canada” with Papa.

I wrote this essay snippet years ago before I was diagnosed:

All my life we went out to Granny’s [farm].  I’d lag behind as they toured every flower and checked the worms on the apple trees.  I’d wander off by myself and play in the rain barrel or squirt my mouth with the reddest raspberries.  Mostly, I swung and twirled on the swing and watched and listened.

Granny wore hot pink sweatpants, [my sister] wore her powder-black sweatpants, and Mum always wore bluebell blue.  There they’d be, picking weeds with their bums in the air like brightly colored laughing talking flowers.

I knew I wasn’t like them, and I felt bad whenever I was told to join in.  People would ask questions, which I now realize as trying to elicit conversation instead of the blunt information I would return.  I felt like an outsider because I didn’t belong.

How do you “join in”?  Please define it.  Please tell me the purpose of it?  Why can’t I do something interesting instead like reading, studying things, doing art, or going up on the sand hill to pick wild strawberries?  As a child, I didn’t understand that others wanted to be social even though it had no purpose, and they were uncomfortable around me because I didn’t.

For parents with autistic children, I am going to think about this on how balance encourage teaching socializing, with feeding the child’s passions and personality, and making the child feel special instead of different.

The same type of parenting applies to neurotypical children, but the method of teaching it to autistic children is more literal with an explanation as to why.

I love fixations, and I revel in them.  The world may say, “Do something useful,” “Talk,” or “We’re doing this now,” but it is deliriously heavenly to fixate.

I fixated on a draping palm tree when I was in San Francisco with my mum last year.  Staring up into that tree was wondrous.  The randomness and symmetry at the same time fascinated me.  I stared.  I made myself dizzy by walking around and around underneath it.

Of course, by walking without looking down, I tripped, which is typical of me.  Just today, I have a bruise on my collar bone from a door jamb I walked into this morning, and this was after coffee.

This tree was truly amazing.  After tripping twice, I sat on the bench under the tree and stared in one spot.  I could see how the fronds worked in a pattern.  Between two fronds, was one frond higher up and again and again.  I sat there making sense of it, just enthralled.

I heard the people at the pool talking about me staring at this tree.  I have learned embarrassment, so I left.  Maybe fortunately, because I was on the way to get a coffee for my Mum, and I got distracted by the tree, so of course, I forgot why I was even outside.

Distraction.  I do it to this day.  I’m doing it right now.  I’m focused on blog posts, not because they have to be done, but because I can’t stop thinking of things about my autism for the blog.  I love writing to you.  You’re a great listener.

I’ve had to get over embarrassment to even write in this blog.  “Hey, I have High-Functioning Autism!” is not something I would have screamed from a mountain, let alone tell the world and you.

I learned some about embarrassment from my fixations.  I remember hearing with a sneer, “What are you doing?” “What are you staring at?  I don’t see anything,” or worse, someone would say, “Hellooo” as they waved a hand in front of my eyes.

But, I’m 43 now, so I have learned to be more confident and stare up into trees, like a blissfully oblivious child.

My 19-year-old daughter is leaving the nest.  My son went to live with Dad for his high school years.  I’m moving in with my long-time boyfriend.  And, I started my weighted blanket business.

I imagine change like this would be difficult for anyone.  Since I have High-Functioning Autism, it is doubly, triply, quadruply difficult for me.

I Feel

A fallacy exists that people on the autism spectrum don’t feel much.  For me, it’s the opposite; I feel deeply.  I just don’t necessarily know what to do with the feelings, except rocking or other stims.

Transition

I’ve working up the courage to live with John for seven years.  I’m here (at his house) most of the time.  We have chosen decorations and furniture together over the years so they are a part of my mind.  Even though the house and the things have become so familiar, just the anticipation of fully moving in disrupts my world.

I have made the transition easier by locating my business in the (entire) basement of his house and working here, so I have gradually gotten used to being here, so I have my house habits.

Routines

My house habits are my routines that I do in exactly the same way in the same places.  As I write, I am sitting in my spot on the couch.  I sit in the same place at the table to eat supper.  I do the morning coffee routine in exactly the same order.  Everything has to stay in the same place.

Gradual

I have to introduce new things into my environment gradually-really gradually.

We, okay, John and his son, moved my dresser into our bedroom.  It upset me that the bedroom looked different, yet it comforted me to have my things around me.  John wanted to move the bed in another direction to make more room, but I told him that it would be too much change all at once.

I need my things.  I enjoy looking that them.  They create a solid comfort-much preferably to wild change.  I want my home to feel like my cozy castle.

What to Do

If your loved one is on the autism spectrum:

• Introduce changes only one at a time.
• Make sure you involve them in the decision-making as to what is chosen and where it goes.
• Always warn them at least two weeks in advance of an impending change.
• No surprises, please.

Change as a New Routine

Lack of change can be a rut to fall in, and one must make change itself a routine to get used to.  It challenges a person and opens up the mind to new ideas.  In small doses, it invigorates.

Just make it planned is all.

Have you ever noticed?

I was asked what was the magical part of my childhood as a person with autism.  With such a question, it took me days to choose one memory over the others.

One Island Lake.  It was a magical place, a sandy beach hemmed in by trees with a shoreline that curved inward toward the beach.  I felt safe because the water was shallow, and when I looked up my Mum was always there.

She let my sister and I stay there all day.  I studied tadpoles, minnows, plants, and lightning bugs.  I made great rivers from one small sandbar to the next.  I was quite happy in this little world of wonders–the smaller the better.

Study the photo above and notice beyond the tadpoles to the sand.  Every piece of sand is a different color.  They all sparkle in different ways.  When you swirl your hand in the water above the sand, some of the sparkles will swirl like a hurricane of rainbows.  The darker colored ones sink first, with the lighter, sparklier ones remaining in the swirl longer.

Have you ever pushed your fingers into the sand on the bottom of a clean, shallow lake?  It feels like…indescribable heaven.  If you leave your hand there long enough, the minnows and tadpoles will come and swim around and tickle your skin.

I remember getting very upset when other people came there because of my discomfort around people and because they were talking and sometimes playing a radio.  It upset me to the point of angry.  It was MY place.  To this day, I have a hard time sharing with others when I have set my mind on something belonging to me, whether it be a place, a thing, or a time of day.  I don’t want to share, but I know I have to so I others will be happy.

Maybe my Mum’s ulterior motive was to get some rest because my sister and I were occupied.  She read a lot.  And, I remember being so tired and wanting to go to bed.  Smart woman, my mother.

I wasn’t aware of the rest of the lake, just my small part of it.  To this day, I know so much about the minutiae of tadpoles and minnows.  On my deck at night, I will see lightning bugs and I still wonder how they do it.  I have the urge to run and grab a jar to catch one in, but that would be mean, so I wonder instead.  I refuse to look up lightning bugs on the internet because I don’t want the magic to go away by having memories turned into realities.

I know Mum brought food and water, but I wasn’t much aware of that.  She said to drink so I drank.  I don’t remember much of anything she ever said when we were there.  I do remember how the waning sun made her blond hair into gold and bronze.  I was quite amazed at such a beautiful sight.  She was the one who brought jars so my sister and I could catch lightning bugs.  I was in awe of her because she knew of such things.

Every time, though, she said one dreaded thing, “Time to go, kids.”  But oh, how I slept.

ttfn in Tennessee, thank you for your question and the lovely memory it invoked.

See what I'm saying?

A Yale study is about me too! Especially when I’m in social situations or I’m trying to figure out what is going on in a conversation, I’ll “read lips” instead of looking people in the eye. That doesn’t mean I’m not listening; it means I’m trying really really hard to listen and understand. I tend to hear what people say literally instead of what body language, facial expressions, and figures of speech say.

From an article quoted on the Autism section of about.com that quotes a Yale Study:

Individuals with autism spectrum disorders (ASD) tend to stare at people’s mouths rather than their eyes. Now, an NIH-funded study in 2-year-olds with the social deficit disorder suggests why they might find mouths so attractive: lip-sync—the exact match of lip motion and speech sound.

Read my lips.  I say read the full article…

Why is “read my lips” usually used as an insult?  I assume it means, “You are stupid because you are not understanding what I am saying or you are not doing what I want.”

Also, as I understand it, “Not look me in the eye.” means dishonest, hiding something, ignoring me, or don’t like you.  If that’s the case, I can understand why people would be edgy around me.  Yet, when I don’t look it’s because I am actively listening.

Know that I care to hear what you say.

This is my brain on green beer and a cacophony of noises on St. Patrick's Day

That’s how I felt last night at the neighborhood bar celebrating St. Patrick’s Day.

A cat will turn its ears toward a sound.  If there are too many sounds, the cat looks scared and will run away.  I’m like the cat when it comes to sound because it’s like my ears are turning toward each sound, but when there are hundreds of sounds, I start feeling all wound up and I get a fight or flight response going.

Here’s the story:
John (love of my life and professional extrovert) asked if I wanted to meet the kids and their friends (they’re older) at the local haunt for a St. Paddy’s day beer.  I like them, so I said, “Sure.”  (My name is Eileen and I have curly, reddish hair and I have freckles, so I have a right to celebrate it!)

Enough parentheses.  I will get on with the story.  They were sitting at a table against the wall, but in the middle of the dining/bingo/karaoke area.  The only spaces left to sit were at the end of the table facing the wall.

The place was packed because it was happy hour and soon-to-be bingo night.  I sat and smiled at everyone because they were joking and laughing.  In minutes I started to feel confused, but didn’t register why quite yet.  Then I just watched people and said nothing but a word or two.  I could hear every noise in front, to each side, and behind me.  The noises were like needles shooting by the hundreds into my head, one after the other, non-stop.  I tried to make them go away by looking at the floor and at my beer.

John knew the look on my face as I grabbed my coat and said, “I’m going to stand outside for a while.”  It didn’t help.  I sat back down and took the abuse from the noise.  My brain confusion mounted; my breathing got shallower; my temperature increased; my sweaty palms started; and a hurting headache came on like a migraine.  It was harder than usual to look at people and I could feel myself whining without making a sound.  I couldn’t think.

“I have to get away, but I can’t because it’s socially incorrect and John wants to socialize,” I thought.  The corner booth was open so we moved there and I thought that would be the end of my problems because I could sit in the corner and calm down.  Not.  I could barely focus on the rapid-fire conversation.  I didn’t know where to look.  Plus there were so many people that my visual field became very confused.

On the way home, we stopped at Target, and I waited in the car.  Every little sound in the parking lot stabbed me in the brain.  I wanted to cry, but I couldn’t even move.  It was very difficult to talk to John and to understand what he was saying as we were driving home.

Evening was supposed to be for some work I had to finish up, but it ended being no-brain TV night instead.

Today, I feel better.  I woke up to the sound of John making coffee, and that’s a find sound for this Irish girl.

Photo by Trudy Loosman. So sensory sensitive, I can feel air.

Sensory Processing Disorder or Dysfunction, also known as, Sensory Integration Disorder is a neurological disorder involving smell, hearing, pain, body position, taste, visual, temperature, and the body’s position and movement.  In short, the brain receives all this stimuli but can’t make sense of it so it reacts normally.

Linda C. Stephens, MS, OTR, in an article entitled “Sensory Integrative Dysfunction in Young Children” stated, “The ability to attend to a task depends on the ability to screen out, or inhibit, nonessential sensory information, background noises, or visual information.”

Here are a few examples from my own experience:

I seem to take in all stimuli and not filter them out.  I’ll say, “That noise is horrid” while others in the room will say, “What noise?”  They were focused on listening to each other or watching and listening to the TV.  They filtered out the “extra” noises, whereas I don’t.

When we go out and go sing karaoke, I usually ask the karaoke announcer to turn down the treble.  If it is too high, I’ll feel frozen and wanting to escape, my head will start to pound, all the other noises will seem super loud, I feel confused, and I find it hard to focus on what people are saying to me.

And that’s just noise.  Add in the other senses and I can be quite confused, agitated, angry, and frightened, or I have already left the room.

Who gets it?

Many places on the internet will say the disorder affects children with no mention of adults.  But, the disorder has only been growing in acceptance lately, so adults with SPD were never diagnosed as children.  They may or may not have learned to deal with the stimuli better than they were when they were children or, they continue to be affected.  Occupational therapy clinics that offer Sensory Integration Therapy are seeing a growing number of adults seeking treatment.

Often Sensory Processing Disorder will be present with conditions such as Autism, Asperger Syndrome, ADHD, and others.  But, SPD can and does exist in people who do not have any other conditions.