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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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If You Had 3 Minutes to Explain Autism, What Would You Say?

Lately, I have been confronted with the challenge of perception. How I perceive situations, people, and challenges, and how others — if they were in my shoes — might perceive that same situation. Autism literature talks extensively about Theory of Mind, mindblindness, and perspective talking, which are essentially three names for the idea that individuals with ASD struggle with the very idea of recognizing, adopting, and/or understanding another person’s perceptions. While I could discuss the intracacies and challenges that this deficit presents, I find myself more interested in the ways in which NTs struggle with understanding the lives, perspectives, and perceptions of those with ASD. If an NT can’t don the shoe of someone with ASD, why should an Aspie or Autie want, try, aspire, or bother with doing the same?

Case in point, I had internet installed in my new home yesterday. The gentleman, in making friendly conversation, asked me what I do for a living. Always a fun subject, I shared with him the basic premise of my job — I work with individuals with ASD. The usual, cookie-cutter response did not occur (“Oh, that’s wonderful” or “You must be patient” or “That’s so rewarding”). Instead, he said with honesty: “I just don’t get autism. What is it?”

I have had this question posed to me millions of times (and likely millions more), but yesterday it took the breath from my lungs for some reason. The immensity and gravity of the question and the import of the answer weighed on my shoulders. What did I want this man to know about individuals with ASD when he walked out of my house? What did I want him to remember? I sat in silence for what felt like an eternity. What words could I use? What perception did I want him to leave with? He must have been confused by my silence because he asked, “Well, don’t they just fly off the handle?”

There was my starting point. I wanted to know WHERE that starting point originated. Who gave him that information? Had he read it? Had someone told him? Did he know someone with ASD who is prone to rages or meltdowns? These were all past the scope of my brief window of opportunity. The time that I was afforded was equivalent to cooking — perhaps overcooking — a bag of popcorn in the microwave.

Set the timer folks, I am placing the bag in the microwave.

I shared about the social impact of ASD and how ASD can appear to be “invisible” in some ways, which brings upon scrutiny and judgment when/if they behave “differently” from the “norm”. I pontificated about strengths and about how their differences are both challenges and true blessings for our society.

The popcorn is popping fast, and I have to grab the bag before it burns. Man that three minutes went fast.

As we walked out, he said, “You know, we all have social struggles in one way, shape, or form. My dad wanted me to play sports. I’m just not that guy. I have other talents. It sounds like your clients do, too.” Yes, internet guy, they most certainly do.

What would you share in three minutes?

 
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Posted by on September 6, 2011 in Uncategorized

 

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Fact or Fiction: James Durbin and Asperger’s?

Tonight, Jesse, a nineteen-year-old client with AS, asked me to watch James Durbin. By now, I’m sure you have heard of him. The twenty-one-year-old unemployed singer on American Idol who has a small child and a supportive girlfriend. I hadn’t heard of James Durbin, nor had the four other guys in the group, all with AS. So, we viewed this clip:

Watching the clip was easy. James Durbin is an excellent singer, more likable and less polarizing than Adam Lambert. He has a story that AI loves — no job, big dreams, complications. For James, these complications are even diagnostic: Tourette’s and Asperger’s. But, watching was only the first part of what Jesse wanted.

“I don’t think he has AS, Jeanne. I think he is working that situation for the show. What do you think?” That’s where the hard part came in. So, I asked the guys to make a case for why he might not have AS; here were their arguments:

“Um, I don’t know many Aspies who frequent bars. Especially at that age. I mean, he’s barely legal.” (James might be breaking a rule, an Aspie no-no.)

“I have Tourette’s. The stress of singing would make me start ticking.”

“Yeah, well, I have Asperger’s. The thought of being around that many people would make me more than nervous.”

“I thought Aspie’s don’t make good eye contact. He just looked his son in the face.”

“That much crap in my hair would make me freak out.”

“His clothes look itchy.”

“I didn’t look at the camera when I was in pictures.”

“I don’t call it AUS-pergers.”

Then, I asked the guys why he would “lie”?

“I don’t lie.”

“I don’t know.”

“To get on tv.”

“To get on tv.”

“To take advantage of the situation.”

I ask you, my reader: What do you think?

 
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Posted by on February 11, 2011 in ASD in the Grand Scheme

 

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“Rude” and “Weird”: Woman says of Boys with Asperger’s

One Saturday a month, I take a group of middle school boys with Asperger’s Syndrome into the community. Our goals? A combination of community-based instruction, including skills like waiting in line to order your lunch, how to amend a mistake with your meal, and how to get a clerk’s attention, and socialization. Put simply: Plain ol’ hanging out on the weekend.

The reactions of the community members we come across are one of the most important components of our day. Unfortunately, as much as they present “teachable” moments, their reactions quickly and often rudely highlight skill deficits as “mistakes”.

Today, only two boys joined me at a local fast food restaurant for the first activity on our list. The boys and I have been on many an outing, so I hung back as we walked in to see how their behavior would fair. A small girl, about five-years-old, was standing at the register ordering a frozen treat. Her mother was about five feet behind her, waiting and watching. In essence, our situations were identical; we were waiting for the inexperienced to build self-confidence and competence under our watchful eye.

One of “my” boys cut in front of this young girl. “Mistake” #1. Calling his name, I garnered John’s attention, and he walked over to me. No surprise, he loudly shared that he was completely unaware of his error. He was not apologetic. He rejoined the line, behind her. After the little girl ordered, John loudly announced what he wanted — a mango smoothie and a large order of fries. I was pleased. He looked in the clerk’s general direction and spoke clearly and slowly. He dug his $20 bill out of his pocket and dumped it on the counter.

“Rude,” I heard the woman say. Apparently, Mistake #2. Ironically, I always remind the boys to hand their money to the cashier in case of this general reaction. John gathered his change and stood by me waiting for Mike. John began talking to me about his latest YuGiOh card addition. “Weird,” the woman muttered. I know John did not hear this comment, so I can only assume the quip was for my benefit. Mistake #3 is all on me.

I told the boys to get their drinks, preparing to educate this woman about AS. And how it means hyper-focusing, me-oriented behavior, poor volume control, poor perspective taking, intense interests. How her five-year-old can be, in some respects, on the same social plane as my two 13-year-old clients.

As I turned to her, the scene felt like slow motion. I ended up face to face with her. I looked down at her daughter and said, “Great job ordering your ice cream. I hope you enjoy it.” I walked away.

My mom would call my response, “Killing them with kindness”. As I sat down with the boys, I couldn’t help but feel like I had betrayed them. Like I missed an opportunity to inform an unknowing person about a hidden disability that is misunderstood in so many ways. The boys didn’t hear or see her reactions, in fact they were happily eating their burger, fries, and smoothies and talking about the movie we were scheduled to see. I felt like I was the only one to defend them and I took the high road. In the end, I rationalized that this outing was about the boys, having fun and learning. But, there is still a voice in my head that wonders if I made the right choice.

 
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Posted by on November 7, 2010 in ASD in the Grand Scheme, NTs on ASD

 

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