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Category Archives: ASD in the Grand Scheme

Parenting an Aspie: A Cerebral Task

What if I were to tell you that parenting a child with Asperger’s Disorder is (as not-so-simple as) having an argument without emotion? Perspective and patience, neither of which are plentiful for Aspies or for participants in an argument, are the keys to success.

Let’s face it. An argument takes on a life of its own. It is a verbal joust without rules, order, or logic. At their worst, arguments can be about “winning”, putting others down, and getting revenge. At their best, negative emotion fuels negative emotion as the initial trigger for the argument is shoved aside by anger, frustration, and impatience.

What happens when you replace the word argument with debate? The emotionality of the interaction is completely drained and replaced with rules and structure. A podium allows for uninterrupted speech. A topic is provided beforehand, affording each side time to construct their thoughts into cogent arguments and counterarguments. Emotion is for emphasis but is not necessarily effective or desired.

Let’s take a mom and an Aspie. Our Aspie has failed to brush her teeth after four reminders because the latest installment of Pokemon is far more interesting. Our mom has a long day ahead of her and little sleep and just needs our Aspie to brush her teeth, so they can leave for school.

Brush your teeth.

BRUSH your teeth.

BRUSH YOUR teeth.

BRUSH YOUR TEETH.

When this shift occurs, from problem-solving, from logical, practical thinking, to emotionally laden speech, we lose our Aspie. We bombard her/him with tone of voice, facial expressions, postures, emotive language, and gestures that simply

Shut

An

Aspie

Down.

Brushing anything is farthest from our Aspie’s mind as she tries to make sense of the emotion. Her mind whizzes, she panics, and she has no idea what to do. As she tries to make sense of the emotion, her mom continues to expect that task to be completed. A full-on argument ensues, and our Aspie’s ability to problem-solve, to think rationally – a typical cognitive strength for Aspies – is replaced with a Flight or Flight reaction (depending on the day).

When the dust settles, and the teeth are brushed, our Aspie cannot be left to pick up the pieces, attempting to understand both the problem and the emotion. We need to have a conversation with her, asking her: How can we avoid this next time? How can I communicate better?

Parenting an Aspie is a cerebral task, a constant one at that. By no means am I saying you can parent a neurotypical child easily or mindlessly but they can make sense and learn from your emotions. Your Aspie cannot. You will parent an NT with your gut and an Aspie with your brain. Your Aspie needs you calm, logical, and with your emotions in check.

 

 
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Posted by on February 3, 2012 in ASD in the Grand Scheme

 

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An Obit: Asperger’s Disorder (1994-2013)

An Obit: Asperger’s Disorder (1994-2013)

Asperger’s Disorder, a lovable, socially awkward and at times misunderstood part of the autism spectrum, died in May 2013 due to complications related to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Asperger’s endured a prolonged battle with ivory-tower hypocrisy and finally succumbed to the paranoid fears of misdiagnosis-motivated endemics and the resultant raging cost of medical expenses. Asperger’s Disorder, known by aliases Asperger Syndrome or Asperger’s, was 19.

Asperger’s Disorder was surrounded by his family, including his brother, Autistic Disorder. 

A beloved icon to some and a controversial figure to others, Asperger’s had deep roots in the most powerful, creative and brilliant minds of our society. With spots in many popular television shows, Asperger’s became the official poster-child for the autism spectrum family.

From 1994 to 2013, Asperger’s was alleged to be responsible for spearheading a dramatic increase in autism spectrum disorders. While naysayers argued that Asperger’s was PC for “freak” or a bail-out for the “weirdo quirky” ones, Aspies clung to their diagnosis with pride and conviction.

Asperger’s is survived by Autistic Disorder, Autism Spectrum Disorder, Sensory Integration Disorder, Childhood Disintegrative Disorder, and Temper Dysregulation Disorder. Asperger’s had recently celebrated graduation from high school and was pursuing courses at the local community college while living at home. Although he aspired to attend the local major university, he knew had many adaptive skills to gain, including juggling a part-time job and maintaining his personal hygiene.

Memorials will be held at upcoming Star Wars conventions, technology summits, E3, LegoLand, Comic Con, LARP gatherings at local colleges, and Magic, YuGiOh, and Pokemon gaming rooms in coffee shops.

 
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Posted by on January 30, 2012 in ASD in the Grand Scheme

 

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Not So Fast: I’d Like to Keep Asperger’s

I have fallen off the face of the blogging Earth for the last I don’t even know how long. I’ve had messages about my health and vitality, as though my silence has suggested that I have disconnected from breathing or working with individuals with ASD. Far from the truth. From the past six months I have been too busy to write anything beyond immediate, work-related items. That’s a nice way of saying I’ve been tired, and, if you’ve read my blog with any regularity, you know that I like to write when passionate, which is usually not when tired.

Over the past three months, I have had a recurring question, theme, concern presented to me: The changes in the DSM-IV-TR that will remove the diagnosis of Asperger’s Disorder in favor of a broader term, yet more diagnostically restrictive diagnosis of autism spectrum disorder. I have written on this topic long, long, long ago. So, why do I return to this topic? Well, to be honest, because about 75% of my clients have Asperger’s Disorder. And, this question KEEPS PLAGUING ME: What does this mean for my child?

I hate my answer.

I don’t know.

Sure, I could hypothesize.

But, will IDEA catch up? I don’t know. I doubt it. It was “just” reauthorized in 2006. In cyberworld, that’s centuries ago. In the legal world, that’s yesterday. For parents with kids with ASD, it’s forever.

Will insurance companies finally do something? Sometime before I die, perhaps. Might be quicker than the reauthorization of IDEA. Maybe someone should take me out. Just trying to expedite things.

If the hope is to stem the tide of increasing diagnostic numbers, not sure it will work. If the hope is to further complicate and bifurcate the ASD community, its focus, treatment, understanding, clarity, awareness, acceptance…. oh, I’m sorry, I have a point…. then, MISSION ACCOMPLISHED.

Yes, the criteria need revamping. We just “borrowed” from Autistic Disorder to explain Asperger’s. Not the smartest idea, but the diagnoses did get rolling.

But, we fought for Asperger’s and now we are going to kill it after 18 years? I’ve had pants, pets, and pairs of scissors longer than that. And, why are we killing it? It’s imperfect, but Hans Asperger had identified something different than Autistic Disorder. Autism is NOT Asperger’s. Yes, they are on the same spectrum, but they are not the same.

If you want my opinion, and I know you don’t, we would replace PDD-NOS with autism spectrum disorder, keep and revamp Asperger’s Disorder, and refine Autistic Disorder.

The APA didn’t ask me. though. Or any of my parents or clients about the loss of Asperger’s. It’s like ripping a bandaid off scraping the surface with sandpaper.

 
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Posted by on January 29, 2012 in ASD in the Grand Scheme

 

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How Do We Put the Spotlight on ASD?

How do you teach someone about something that they don’t know about? If you are considering moving on to a different post or different page because of the lack of clarity of that statement, be warned that it is purposefully vague. A few days ago, I asked people to provide me blog topics because I was in a bit of a creative funk. Following my earlier post about my exchange with the Internet guy, a parent asked me to blog about how in the world we explain autism to people who know nothing about it. I’ve been thinking about that topic for quite some time, trying to decide how to think about and how to approach such a topic.

Think about a bookstore. There are hundreds of sections and sub-sections. Photography. Test prep. History. Crosswords. Literature. Children’s literature. Black history. Civil war. Nature. Cooking. Dieting. Self-help. What section do you frequent? I recently began exploring to the photography section, as I have purchased a DSLR and am learning the craft slowly but surely. I noticed the section before, but I never picked up a book, flipped through its pages, or considered learning. Was I interested? Maybe from a pure state of curiosity. Did I need to look in that section? Nope. Didn’t own a camera. What’s more, it’s a complicated endeavor. As a matter of fact, everything is a complicated endeavor with pages and pages of information read on topics both large and small. ASD is no different — a huge topic, with millions of voices, and a lot to learn. So, what tips the scales in the direction of wanting to know more?

Quite frankly I believe it is need. A teacher has a student with AS placed in her classroom. A camp counselor has a camper with autism in his camp group. A parent has a child diagnosed with ASD. Suddenly, this unknown entity becomes pertinent enough to warrant, even necessitate exploration and fact-gathering. Recently, I was asked to serve as an expert witness for a case in which an adult with AS was hit by a train. The lawyer said it best: “I’d heard of it but never thought much about it until now.” So, how do we make ASD not just visible with a puzzle piece but visible with a significant impact that warrants explanation?

 
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Posted by on September 10, 2011 in ASD in the Grand Scheme

 

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James Durbin on American Idol: The Tale of Fitting a Square Peg in a Round Hole

Courtesy of: newgre.org

Know what  you get when you try to fit a square peg in a round hole? James Durbin. Or any person with Asperger’s really. I could lecture, ahem, inform you on all of the ways Aspies just don’t quite squeeze into that hole, no matter how we position and rotate and twist and turn. Mind you, that assumes our hole represents neurotypicality (and, not to mention, that the pegs want to be shoved into the holes, which they don’t). But, poor James, he doesn’t even get that. He gets people, this blogger included (Fact or Fiction: James Durbin and AS?), questioning his square peg status. He has people telling him, “No, James, you are not a square peg trying to fit into a round hole. You are a round peg trying to fit into a square hole.”

All of this because he disclosed. He pronounced a rather unfortunate word with an attempt at a sophisticated interpretation — one that’s not all that uncommon, mind you. And, then, he acted too “normal”, other than that squinting. Too much eye contact, and coordination, and appropriate facial expressions.

All of this because he preempted possible comments about his mannerisms by giving us an explanation that should have lead us to say, “Ohhhhh, now I get it” or “Good for you, James” or “What a positive example for us to point to”. But, we have to find some way to judge, right? After all, isn’t that the point of the show he is on? If James hadn’t told us, we’d wonder why he was “weird” or “squinty”. If James tells us, we doubt his authenticity, his purpose. Joseph Heller might be tempted to rename his book, James.

This Catch-22 was echoed in my office today with two male clients who have very different views on disclosure. One sees no shame. In his words, “I look normal until I talk or write. Like when I write a check and it takes forever, and others start to wonder, ‘What’s up with this guy?'” The other struggles to admit the diagnosis even to long-time friends. “It will change their view of me. I can’t control that.” James is at the crosshairs of both problems. He’s looked normal, until he hasn’t. He’s disclosed and lost control.

So what’s a square-ish round peg to do in a static world? To start, I suppose, win American Idol.

 
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Posted by on April 30, 2011 in ASD in the Grand Scheme

 

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Boys in Social Skills Group: “My Autism is Forever” versus “My Autism Used to Be”

Whenever a new member joins a group, we do what the kids call the NOOB game. In this game, they are given a set amount of time to figure out a fixed number (usually their age) of things they have in common. These commonalties cannot be what I call “no duhs” — they have hair, they are boys, they have feet, etc. Today, the boys eagerly requested the NUBE game with the addition of Vic.

The game usually begins with pizza, video games, ice cream, and Star Wars. Until today. “Do we all have diagnoses of Asperger’s, autism, or AD/HD or something like that?” asked Trevor. “Asperger’s”. “Bi-polar Disorder.” “Not me. I used to have autism, but not any more.” Trevor said, “Wait, dude, if you have autism, you have it forever.”

I can honestly say that this topic has never come up in group, which, now that I think about it, is somewhat surprising. Most days, no stone goes unturned. I was caught off-guard today and I know that I didn’t do the topic justice. In fact, we didn’t “do” the topic at all. Both boys were adamant that they were correct — Trevor that autism is forever, and John that he “used to”. They didn’t argue, rather they just shutdown. So, we moved on.

The question that remains for me: How do I reconcile this contradiction for Trevor and John and the others?

 
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Posted by on February 23, 2011 in ASD in the Grand Scheme

 

A Kid with Asperger’s Pays It Forward and I Smear My Mascara

I could not sleep last Thursday, February 17, 2011. I was awake until 4AM Friday morning, fretting, thinking, rethinking, analyzing, and regretting. I tried all of those cliched home remedies — warm milk (I’m not a fan of milk, so that was my level of desperation), melatonin (6mgs when I usually take 1mg), reading in low light, boring television, counting sheep, a deep breathing routine. Nothing. I hadn’t been that anxious about something in years.

Earlier that morning, I visited Christopher’s house. Well, I thought I was visiting Kim, Christopher’s mom. We were going to talk about Camp Confidence, a camp I started last year for kids with AS. When I arrived, I asked my customary question: “Do you want me to take off my shoes?” Kim laughed and said not to worry. Then, I looked up to see Christopher and his brother. “Why are you guys home?” I asked. Kim said, “It’s a special day off from school.” I joked, “If you guys keeping have special days off, you will be going to school well into June.” (We’ve had a lot of snow in Kansas City, which is akin to saying the North Pole has a lot of 80 degree days.) I was ushered into the dining room and, then, bam! camera in my face. You see (or you will see in the clip, please click here) that the special day off from school was for me.

All day and all night, I reviewed every answer to every question I was asked in my head.  In hindsight, I cringed at some of my responses. I downright groaned at others. I hoped and prayed for editing because I wanted Christopher and all of the clients I serve to be seen in the best light.  I realized  that light for me is not best when attached to the end of a television camera and shoved directly next to my face. But, I had this opportunity to speak for them, and, well, I laid in bed knowing I could have done better.

To watch that video, though, was perfect. I’m not the star, and I have never wanted to be. The light, you see, shines brightly for and on Christopher. He is a star, the star. I didn’t need to worry about what I said because he said it better. Better than I could ever have imagined.

I am simply proud, honored, and blessed to know him, his brother, and his family. Thank you, Christopher.

 
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Posted by on February 22, 2011 in ASD in the Grand Scheme

 
 
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