My Autism, Social Training and Twinkling Lights

by Eileen Parker on June 22, 2009

If you are not on the autism spectrum maybe I can help you understand your loved one’s visual detail that brings such delight, but others may not understand. It’s this detail that can bring a difficulty with understanding context, like in social situations.

I have a fascination with twinkling light that draws me and pulls me into my mind so I notice little else.  I walk to them when I see them, I stare, and I watch over and over.

Try this exercise:

With the speakers off, play the above commercial, while focusing really hard on each twinkling light.  Focus only on every detail of each light, so the objects and the background disappear.  Notice as many lights as you can.  Then play it over and over focusing ever more on each light as it unfolds.  Observe the light growing and disappearing.  As each light moves, notice the trail of light it leaves behind.

With each playing of the commercial, you will notice that you start to have less recall of the shapes and the background but your mind will fill up the lines of light as the twinkling unfolds.  It may be difficult at first, since neurotypical people think in context.  Your mind may at first jump to the objects and the entire picture.  Try your hardest to focus on the lights so you can understand your loved one’s mind a little better.

My visual thinking enables me to see every detail of light automatically.  If you are not on the spectrum, you may have to work at it over a longer period of time to learn how to achieve it.  Or, you could train your brain to learn certain techniques, but without ever learning to do it automatically or properly.

Such Detail in Social Situations

Now, when I try to behave like a neurotypical person in social situations, I have to really work at it.  Over the years, I have learned one social rule at a time.  I rarely learn by “figuring it out” because that would require that my mind can understand social situations in context, much like seeing the bird, flower, tree, and background in the twinkling bird commercial before noticing every little light.

The concept of “making a first impression” mystifies me.  When I meet someone, I know nothing about them so if 30 seconds later, someone asks me what I think of the person, I would have to say, “I don’t know.”  I would also not understand the purpose of asking what I think of the person.

Evidently, neurotypical people get an “impression” of a person in the first 30 seconds.  They have summed up the person into a whole impression that they can talk about.  They have also made decisions about their continued interaction with this person.  They have decided if this person is safe or not.  I don’t know what this person is “like,” whatever that means.

Me?  I usually don’t remember faces and haven’t picked up on the non-verbal facial cues.  I’ll notice and remember details of jewelry (especially if they are twinkly!), clothing, physical size, etc.  Based on these details, I don’t know how I’m supposed to interact with this person.  I don’t know what to say or not to say.  I don’t know if I should walk away or continue to talk.  Also, in how many seconds or minutes am I supposed to walk away?  How long am I supposed to interact?

My brain is running through every social rule I know trying to figure out what to do.  If I don’t know what to do, I talk incessantly or say nothing and walk away.

I am still going through what I call “Social Training University” and learning the rules that create social interactions.  I’ve learned so many I can apply almost consistently.  Hey, I’m not necessarily using the rule in the right situation with the right people, but at least I have learned the rule.

The Science Behind It

This blog was sparked by the paragraphs below from this article in Science Daily.

“Autistic people usually can’t grasp the full meaning, or context, of a situation,” she said. “This often leads to difficulties in social settings, as making inferences from what someone else says or thinks is extremely difficult for an autistic person.”

“Our studies strongly suggest that autistic people need more emphasis on and explanation about the context of different situations,” said Hillier, who leads a social skills support group for people with milder forms of autism. “We can teach them how to interpret different situations.”

Fixations, Embarrassment and my Autism

by Eileen Parker on June 3, 2009

Fixations and my AutismI 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.

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Change is Difficult for me–a Person with Autism

by Eileen Parker on June 1, 2009

Slow ChangeMy 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.

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Family TV Watching and Autism

by Eileen Parker on May 8, 2009

screamYou can help your child with autism lower their stress level with some simple rules about family TV watching.

As a child and now an adult with autism and sensory processing disorder, I know that TV can be stressful to the point of jumping, tears, anger, confusion, and other reactions.   As an adult, I have learned to contain some of my reaction in front of others, but children don’t necessarily have that regulation built in yet.   Also, while watching TV, I will start to feel upset. I often don’t realize what is bothering me early on, but I have learned to identify my own signs.

When my hubby and his kids are talking and watching sports, I have to leave the room, close the door, and go away because my aggravation from the sound continues to elevate until it boils.

A child may not know that they can leave the room to a quieter place.  A family member may even tell the child to stay in that room or the TV may be audible throughout the house, so the child has no escape from the sound.  With the noises from the TV, the child’s irritability can climb all day.

Here are some TV rules that could make your child’s life much more relaxed:

  1. No talking while the TV is on. More than one source of sound is not merely aggravating; it feels like a hurt in the brain.
  2. Mute the commercials. The sudden jarring sound of a blasting commercial bashing into the ears can make your child jump, sweat, reathe fast, or make sounds.
  3. If your TV has the capability, lower the treble. The higher register noises are more painful.
  4. Put the TV in an enclosed room and close the door so your child does not have to hear it.
  5. If you are not watching the TV, turn it off.
  6. Have your child look away from the screen during commercials so the fast-moving visual stimuli don’t make it worse.
  7. Turn the volume down.
  8. Learn to make TV more bearable for your child by doing a brushing protocol first. Your child can also lie under a weighted blanket while watching TV.

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Magic in my childhood mind with autism

by Eileen Parker on April 15, 2009

Have you ever noticed?

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.

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Relax Anxiety at the Dentist with a Weighted Blanket

by Eileen Parker on April 10, 2009

Dentist?  Relax with your weighted blanket.

Dentist? Relax with your weighted blanket.

Pressure on the body from a weighted blanket can relieve anxiety at the dentist’s office. For years, many people have enjoyed the weight from the heavy vest worn while getting x-rays at the dentist’s office as commonly known from a multitude of subjective accounts. Now they can get that relaxing feeling by wearing a weighted blanket.

A media release about a new study to be published in the Journal of Pediatrics says that a relaxing environment, including weight on the body, significantly relieves stress at the dentist’s office. Dr. Michele Shapiro of the Issie Shapiro Educational Center and colleagues from Hebrew University in Israel studied the effects of the sensory environment on a child’s anxiety levels during two separate routine cleaning visits to the dentist.

The release reads, “For many children, a trip to the doctor or dentist is a stressful experience. The sensory environment (i.e., the sounds, smells, and lights associated with the clinical setting) can cause a child’s anxiety levels to rise. This is especially true in children with developmental disabilities who may have difficulty understanding the unfamiliar clinical environment.”

This reaction is similar to Sensory Processing Disorder. SPD is a neurological disorder involving smell, hearing, pain, body position, taste, visual, temperature, and the body’s position and movement. The brain receives all this stimuli but can’t make sense of it so it can react normally.

The release continues, “The first trip included the typical sensory experiences of a dental office, including fluorescent lighting and the use of an overhead dental lamp. During the second trip, however, the researchers created a sensory adapted environment that modified the experience of the children. No overhead lighting was used, a slow moving repetitive color lamp was added, and the dental hygienist wore a special LED headlamp that directed the light into the child’s mouth. The children listened to soothing music and were wrapped in a heavy vest that created a “hugging” effect.”

The “hugging” effect is a type of sensory calming called proprioceptive input, which is pressure on the muscles and joints. Proprioceptive input sends signals to the brain that cause serotonin to be released, which is the neurotransmitter in the brain that makes people feel happy. An increase in serotonin causes natural melatonin to be released in the brain giving even more of a feeling of calm.

A more comfortable way to induce the “hugging” effect is by using a soft and pliable weighted blanket. Parents and dentists can use a toddler- or child-size weighted blanket on the child to soothe the anxiety from dental procedures.

Dentists and parents can get these weighted blankets from Cozy Calm.

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Watching lips by people with autism

by Eileen Parker on April 6, 2009

See what I'm saying?

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.

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Therapeutic Horseback Riding

Therapeutic Horseback Riding

Hoofbeats to Healing provides therapeutic horseback riding in Utah using an effective, natural approach to therapy via Missouri Fox trotter horses. Based on the theory of Cross Hemispheric Integration.  If a child didn’t crawl correctly their brain may not be mapped correctly.

Therapeutic horseback riding is effective with disabilities including, but not limited to:  visual impairment, learning disabilities, Cerebral Palsy, Spina Bifida, Developmental Disabilities, Autism, Head Trauma, ADD/ADHD, Stroke/Heart Attack, Spinal Cord Injuries, Emotional Disabilities, Multiple Sclerosis, Hearing Impairment, RADD, MS, and more.

So many kids need scholarships to ride, and you can help!  The Straighter Way Foundation is raising money to send kids to horseback riding therapy at Hoofbeats to Healing.  Donate online.

In-kind donations are needed for their fundraising event April 25 at the ranch in Palmyra, Utah.

I donated an Autism Awareness School Lap CozyTM to help them raise money. You can donate an item for auction too, by contacting Tami Tanner at 801-836-4325.

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This is a joyous post from the General Hysteria blog by Mia.  Enjoy.

He’s the one who brought us together; the one who was the Best Man at our wedding; the one for whom our only wish was that would dance. He is my Angel. He is my Alex and today is his birthday.

The excitement that came with his birth has been overshadowed by none. The story behind him, the story with him, the story he writes each day of his life, the story that is his, he will willingly share with all those who ask, who wonder, who care. The life I see in his eyes show the curiosity, the sensitivity, the love and affection, the purity of his innocence, the glimpses of the thoughts we will never know, the silent if not softly spoken words that can never meet his lips.

If you are willing, he will profoundly open your eyes. Everything we miss, what we take for granted, the reminder that the little things are truly enormous. The flight of a plane. The gracefulness of metals clinging together, forcing themselves against the coldest of clouds, leaving their “footprints” in the sky. These airplanes, of all shapes, sizes and colors that fly above us. Sometimes they sound off from far away, bringing curious searching eyes to the skies looking for their display. “Look, do you see it? Do you see it?” pointing to the white streaks that mark the sky. The favor he affords you by ensuring you see this wonder above your head; don’t take it for granted, you’re letting it pass you by. It’s special. It’s enormous. See it through him. Yes, he will profoundly open your eyes.

[click to continue…]

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Fargo Flood–my 15-yr-old Sandbagging

by Eileen Parker on March 28, 2009

Fargo flood

Fargo flood

My son lives in Fargo with his dad, three blocks from the rising flood waters, but behind a flood wall.  Max cares so much he’s been working every day at sandbagging the low-lying areas.  One night my son and his friend, Nigel, sandbagged from 8:00 p.m. to 8:00 a.m.  His dad fed them a big meal and sent them on their way.

Yes, I’m a little worried, but they won’t be flooded where they live.  I am worried about the people who have been and will be flooded.  So is he.

What a good kid.

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