I'm not weird. I have SPD by Chynna Laird

Talk about echoes of my childhood and my present with my Sensory Processing Disorder (a.k.a. Sensory Integrative Dysfunction).

In the book, I’m Not Weird, I have SPD, author Chynna Laird uses descriptive words like:  hurt, screamed, pain, and scared. Those are words that I use to this day as an adult with SPD.

Sensory overload still erupts in a flight or fight response that makes me want to scream and run away.  What validation and relief I would  have felt if such a book had been written was I was a girl.

How lucky her daughter is that she has the SPD diagnosis.  In the book the fictional girl goes from the hurting words to words of relief.  Her parents are able to help her, and they accept her the way she is.  In my heart, I know that had there been an SPD diagnosis in my childhood, my mother would have read this book to me.

As a parent of a child with SPD, we hadn’t known about it in “his” younger years.  (My child does not wish to be identified.)  “He” hated to be touched.  Like in the book, he had to be taught to accept a hug, but only a certain kind–the very tight ones.

Later he learned that touch can soothe also, but always hard touch like a massage when I push my palms hard into his back muscles and neck.  I had to do that every night for years so he could get to sleep.

This book is too late to read to him, but it is perfect timing for so many parents who wonder what is wrong with their children.  It’s as much of an education for them as it is for the child, since, in parts of the book, it is written from the child’s perspective, so parents may be able to relate to their child a little bit more.

I must admit that when I first read it, I was sad–very sad.  I remember the pain, literally and emotionally.  One event stands out in my mind.

Forest Park Elementary School was a radical idea in the 70’s.  It was an open concept school, meaning children could move from class to class depending on their skill level in a particular subject, which my mother thought would be better for me rather than skipping any more grades.  But, the classes had no walls; it was literally an open concept.  The 360-degree noise burned my senses until one day, I freaked.

I ran to the bathroom and sat in the corner and leaned against the wall.  With my fists clenched and my body in a tight fetal position, I rocked.  The breath coming into my lungs hurt.  My head hurt so badly that my vision blurred.  A teacher found me and carried me to the front office where my mother picked me up.  At home, I hid in my room for hours until the pain abated.

After this happened many times, I was dubbed as having migraines.  Now I know that I don’t have migraines and likely never did.  It hurt; I screamed in my head for help; I was in pain; and I was very scared.  Yes, I did get teased.  My mother was mystified, and I remember her face looking scared too.  The doctors said there was nothing they could do.

If you know a child who screams, hits, hides, runs away, or has other unexplained outbursts, read about Sensory Processing Disorder.  If the child is diagnosed with this disorder, buy I’m Not Weird, I have SPD so the child can feel a sense of relief too.

Chynna Laird’s Website
Chynna Laird’s Blog

Related posts:
360-degree Noises
Family TV Watching and Autism

Thinking in Pictures and Making Connections

This is how a little on how my autistic mind thinks…

I just had a talk with my daughter about how she grew up with a parent with Asperger’s Syndrome (on the autism spectrum).  After looking at her like she was an alien (fascinated) and saying, “I don’t get it” and asking pointed questions until she would inevitably say, “Other people just know,” I thought of toddlers.

Toddlers do parallel play.  The play happily beside each other, not solo, and not group play.  I’m like that with John, my partner of many years; we’re never physically far apart, yet our minds will be preoccupied with something that we’re intent on, and he’s not even an Aspie (person with Asperger’s), just the self-assured, focused, independent type.  We even both work from home, but in separate offices.

I looked up “parallel play” while my daughter was downstairs on the computer and I ran across this The New Yorker article, by Tim Page, named, surprise, surprise, “Parallel Play.”  I was slightly miffed, yet not surprised that someone else thought of it first.  That happens a lot.  I suppose an idea is only considered brilliant if you think of it first.  Maybe I’m just slow compared to the people who think of things first?  Maybe every person thinks of things that have already been thought of?  Is this a generational thing where future generations are doomed to repeat the mistakes of the past?

I went on in this line of thought for a while then started reading the article.  Yes, an article about the author’s Asperger’s Syndrome.  I decided that it would spur a great deal of blog posts based on the clarity of the article.  I could personalize his personalizations of Asperger’s.  I suppose that is hardly a unique idea either.

As I went on this tangent, I forgot to tell my daughter about parallel play.  When she was ready to leave, she said, “You should come to the door and say goodbye, Mummy.”  I did.  I hugged her and kissed her because she is my amazing, darling daughter, and I wanted to.  She said, “Yes, that is what you’re supposed to do.”  She was smiling.

So, here I sit confused.  In some year past, she (my neurotypical kid) had told me that I should see people to the door and say goodbye, and I should show emotion.  I did, and from what I could tell, people liked it.

Now, she tells me that I should actually come to the door, not stand at the top of the stairs making repetitive hand movements.  This makes no sense to me so I ask, “Why?”  She says, “I don’t know why; it’s just what people do.”  To me, that wasn’t an answer.

I often come up with ideas because I ask, “Why?”  I veer from “what is normal” in a very linear way, yet they all come together to form connections.  Like in the writer of the New Yorker article, I’ve been dubbed “brilliant” and “creative” time and again, yet I don’t feel brilliant.  I feel like I ask dumb questions, but as the saying goes, “There is no such thing as a dumb question.”

I hadn’t finished reading the article, and I have so many more questions to ask my daughter about how she thinks.  I also haven’t written a blog post yet based on the New Yorker article, but that will come along with a flurry of new connections.

Back to how my mind works:  It’s much like following links on the internet (a linear activity) and finding the new that connects back to previous ideas on pages.  Perhaps that is why we hit the “back” button on the browser to check back to earlier connections.

The connections always lead back to self-knowledge, which for anyone, Aspie or not, are the most difficult.  That is why it is so easy to give advice to others, but occasionally feel lost ourselves, but that is for another blog post.

Proud to be an Aspie

The Eight Asperger Advantages

by Kristina Elaine, reprinted from Alyson Bradley’s Aspergers Parallel Planet

There are aspects of Asperger Syndrome that you can use to your great advantage.

1. Focus

Your ability to focus on one objective over long periods of time without becoming distracted allows you to accomplish large and challenging tasks.

2. Unique Global Insights

Your ability to find novel connections among multi-disciplinary facts and ideas allows you to create new, coherent, and meaningful insight that others would not have reached without you.

3. Independent Thinking

Your willingness to consider unpopular or unusual possibilities generates new options and opportunities and can pave the way for others.

4. Internal Motivation

Rather than being swayed by social convention, other’s opinions, social pressure or fears, you can hold firm to your own purpose. Your unique ideas can thrive, despite naysayers.

5. Attention To Detail

Your ability to remember and process minute details without getting lost or overwhelmed gives you a distinct advantage when solving complex problems.

6. 3-Dimensional Thinking

Your ability to utilize 3-dimensional visioning gives you a unique perspective when designing and creating solutions.

7. Cutting Through The Smoke Screen

Your ability to recognize and speak the truth that is being “conveniently” ignored by others can be vital to the success of a project or endeavor.

8. Logical Decision Making

Your ability to make logical and rational decisions and stick to your course of action without being swayed by impulse or emotional reactions allows you to navigate successfully through difficult situations without being pulled off-course.

THESE TRAITS CAN BE USED TO DEVELOP INVALUABLE LEADERSHIP AND ENTREPRENEURIAL SKILLS

Copyright © 2007 by Kristina Elaine. All rights reserved.
Via Alyson Bradley – Aspergers Parallel Planet

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.”

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.

You 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.

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.

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.

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.