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

I was on CNN Health!

CNN Reporter Elizabeth Landau called me at work one day because she found me via this blog.  Boy, was I surprised.  The article is entitled, Move to merge Asperger’s, autism in diagnostic manual stirs debate.

Let me know what you think about this issue.

I recommend that you watch this.  Best Autism Video: autism reality by Alex Plank of WrongPlanet.net

“When you hear a sound, your brain responds.  When the child with autism hears a sound, their brain responds too, but a little bit later.  What we’re seeing is a…split-second delay in recognizing that sound,”  Tim Roberts says.

Ms. Chetry asks, “How does that play out in how children with autism learn and communicate?”

“What happens is that as speech becomes more complicated, we have more and more sounds building up, and these delays cascade on each other leading to a difficulty in perceiving or recognizing the word.”

Can you imagine how long it took me to transcribe the above sentences from the video?  I had to see, hear, understand, translate into a visual of the word in my head, type what I saw, while still hearing more, and more, and more! going in.

I was lost after three to five words each time I tried, so I played the video in a different window so I could just listen and type without seeing the heads moving, but the delay in my mind was just too much, and it all became garbled in my brain.  I didn’t understand the sentence and didn’t “see” the words in my head.  I had no clue what they were saying.  I was so quickly lost.

My typing speed is not the issue.  My preferred form of communication is email, and I write every day, so my typing speed is incredibly fast.  So, I tried another approach based on my experience.

One Source of Input

Only so much input at once, is my rule.  So, say the bare bones of what you have to say, then stop–unless you are communicating with facial expressions, tones of voice, and hand gestures.  Then you will have to state those unvoiced messages because I didn’t receive them.  They are visual distortion of the message.

This is why I tried transcribing without looking at the video to rid myself of the moving heads.  The moving distraction was enough that I lost understanding of the message very quickly.

The Next Try

Playing the video without watching while trying to type didn’t work either.  Without the visual, the delay wasn’t as slow, but I was quickly tripped up and way behind what was hearing.  It all turned into a mess in my head and my agitation increased in a millisecond.  I raced to the mouse to get to the video window so I could click “pause.”  I breathed out.  I had freaked out inside.

But, I have a Great Visual Memory

This time, I watched the video to understand a complete thought and paused the video.  Then I clicked to this window I am typing in and wrote the thought word for word without error.  I waited to let it integrate and to anticipate what they would say next, then I switched back to the video and repeated until the transcription was done.

I “saw” what they were saying.  I literally see the words in my head as they are talking.  The words have time to form into a visual then when I stop the recording, I see the whole sentences.  I worked at my usual fast typing speed because I was literally copying what I saw.

Advice for Teachers, Bosses, Parents, and Spouses

1. Public speakers use dramatic pauses to let a point “settle in.”  All people need pauses, not just the ASD people, so they can catch up with what is being said and integrate what they have heard.  Do the same for your loved one, pupil or employee with Asperger’s or autism.
2. One of my children summed it up best when this child said, “Okay, okay.  I get it, now stop talking.  You don’t have to keep explaining!  Stop talking!”  This child’s frustration level escalated rapidly if I didn’t “talk, stop, talk, stop,” so that day it resulted in a door slamming.  I understand the frustration completely, yet I forgot to start with a short summary then stop completely.
3. If you notice a person on the autism spectrum watching your lips when you are talking, it is a sign that you are talking too quickly and not pausing or not letting any silence hang.  Related article…
4. If you like to make a lot of facial expressions, body and hand movements, to make your point or “drive home” your point or “communicate what you are saying,”  don’t; it will muddle the message.
5. It is the easiest for me to understand speech in the morning, so my meetings and phone calls are generally in the morning.  In an afternoon meeting, I often have to get people to repeat points they are saying.  So, afternoons, I usually focus on a task with little environmental distraction.
6. Teachers, your autistic students may have more trouble writing in the afternoon because they are thinking of “what to say.”  Subjects such as math, graphic design, art, physical education, cooking, reading, or computer programming are relaxing in the afternoon.

Did You Notice how I Wrote This?

Some sentences, which make them more difficult to understand, have thoughts split.  Some sentences run on explaining point after point and linking thoughts thereby diluting the one necessary thought.  Some sentences are concise.  Choose the latter, then stop.  Believe me, it will be much appreciated.

“I was being metaphorical about the heart and you just got all confused and just couldn’t relate,” John smiled as he said it.  We were talking about Saturday night after we got home from an evening out.  I remember I had started explaining why the heart and mind act that way because of chemical processes that go on in the mind and body.

Then he started laughing so hard!  I wasn’t offended because he never laughs AT me, just with me.  But, I had no clue what was so funny.  He just reached over and cupped my cheek in his hand and kissed me.  He said, “Yup.  I’m Captain Kirk and you’re Mr. Spock,” still chuckling.

Then I continued, “Yes, I suppose I’m a combination of Mr. Spock and Data.”

“Who?”

“Data, from The Next Generation.”

He laughed again, “Sorry, love, I am not up on my sci-fi like you are.”  I realized what he was talking about and I thought, “OMG, am I the stereotype of a geek where from a lot of these Asperger’s online tests came from?”

I said, “You know, love, I’ve actually had a secret desire to go to a Star Trek convention and dress up and the whole bit, but there are too many people there.”

He started laughing even harder.  Again, he was NOT laughing at me.  It’s a common joke between us that I do NOT want to go to the Minnesota State Fair every year like he does with the kids because the sheer dizzying cacophony and visual flashes just kill me to the point that I have to leave, and NOW.  It’s an extremely serious issue for me, but we laugh about it to take the edge off and to show that he accepts me the way I am.  We laugh because he knows never to ask me to go to the State Fair or any other super-crowded venues.

He loves me the way I am and does NOT see me as flawed, nor do I.  We are the complete opposites, which is something we both have respect for because we think it is so cool that one can think or do in ways the other can’t.  We’re the perfect complement.  We even scored almost exactly the opposite on our Myers-Briggs tests, me, an INTJ, as you may have suspected if you are familiar with the test.

I like being logical.  It’s relaxing.  Yes, I sometimes often to do not know what’s “going on” with other people, but if I understood their drama, I’d be very upset all the time.  So, I have Asperger’s and I’m a happy camper being the logical, cool, calm island who people run to when they are emotionally distressed.

I give big hugs and I’m a great listener.

Oh, and about the heart, John was being romantic and saying sweet nothings about how his heart feels for me.  It was a little subtle for me, but I always understand and feel it wholeheartedly when he says, “I love you.”

Side thought:

Isn’t the stereotype of a geek, a man?  Not so, say I, because I personify geek.  Fortunately, “geek” is in style, so I am so de rigueur.  I am the brilliant, clueless epitome of cool.  Yes, I’m smart and logical, and my kids often say, “You’re going to wear that?”

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.

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.