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Why the Autism Community Needs an Ice Bucket Challenge

Every weeknight on my way home, I drive past a blue porch light. As you’re most likely aware, that blue light is a symbol of autism awareness. Mission accomplished: I’m aware. Then, I pull into my driveway, park my car, go to bed, awake the next day and repeat. Oh, there’s that blue light again – I’m aware again. Eventually that blue light joins my overly color-saturated life as a Christmas decoration, an Open sign, a flashing police siren. “Lighting it up blue” fades away.

Ice-cold water, on the other hand, sticks around just a bit longer. When damp clothes dry and chilled bones warm, why not relive that glorious moment. A video clip is no doubt on Facebook or Youtube for others to enjoy, to “like” and “share”, and to create a visual phenomenon so contagious that more elaborate schemes have been created, more embarrassing moments gloriously shared, more friends and family nominated, and more wallets opened.

To the tune of $114 million.

In less than one year.

Congratulations are due to the ALS Foundation. Amyotrophic lateral sclerosis is a devastating disease worth funding, attention, and education. Nay-sayers criticize the challenge for many sound reasons, none of which I care to address.

What I care about, what confounds me, and what royally pisses me off is why such a phenomenon has yet to bubble up in the autism community. Sure, we’ve had celebrities with children with ASD and television shows depicting the spectrum. They’ve put a face to the cause. They’ve funded the cause. They’ve spread awareness. But, that’s them. Not all of us. Not your next-door neighbor dumping water on his son. Not your daughter’s teacher who nominates her class and parents. Not your child dumping water on you.

The ALS Ice Bucket Challenge brought ALS into our homes and our lives. Sure, donations seemed secondary to “fun” but $114 million talks.

Autism speaks, too, right?

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Posted by on September 20, 2014 in Uncategorized

 

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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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Disclosing Aspergers to Second Graders: Parent or Expert?

One of the most intelligent people I know once said, “If you’re not passionate about the subject, your writing suffers.” You can see by my lack of posts for two months that the fire has not been stoked, and I have not wanted to waste your time reading something subpar. If you think about, that’s my very own Aspie trait — an all-or-nothing, perfectionistic approach to my blog. For a while, I though that, perhaps, I’m trying to take a more even-keeled approach to my career and passion — not letting every little ignorant comment someone says about ASD set me into a blind rage. If that’s the case, it was not a conscious effort. Regardless, the fire has begun to blaze again as I try to ascertain how in the world to explain Asperger’s to a group of second graders in a local parochial school. Because I am hoping for YOUR thoughts, advice, and recommendations, let me provide a bit of background.

Peyton is my client. He is a very thoughtful, engaging young man. He interacts with peers with zest and vigor. He is highly motivated to do well at school. But, it’s those darn kids that break rules that are the demise of my Peyton. You know — the kids who talk when they are not supposed, even if they are whispering. The kids who don’t hear the rules for an assignment and make up their own shortcuts. The kids who push in line to be first, even though they have assigned spots. These kids cause the scissors to fly, the papers to crumble, and the hands to push. These situations cause Peyton the Polite to transform into Peyton the Policeman, ready and waiting to give citations.

Peyton’s school has been phenomenal. Receptive to my recommendations. Open to patience, rather than punishment. Even allowing me to start a social skills group during the school day. We are trying to make the parochial placement work. In an effort to increase acceptance and understanding — mind you, I’m worried this will backfire — the parents and the school would like to tell Peyton’s classmates and their parents about AS. On Monday, we sat in a meeting during which all eyes fell on me for that honor. It is an honor, but, man, does that honor weigh a ton. This is an onus I’ve carried before, so I’m not sure why this time, this idea of disclosure is so nerve-inducing and off-putting and difficult.

Since Monday, I’ve asked many their opinions. “Don’t do it!!!!!” with endless echo has been one strong reaction. The other is advice on what to say, how to say, and, in essence, how to couch and explain the idea of a diagnosis that sounds like an explicit word-food. I’ve begun compiling a document with everyone’s advice because this disclosure will happen soon. A week or so. And, I have to have a plan soon.

So, I put to you, my informed, intelligent, and opinionated reader: What do I say? And, perhaps more importantly, do I take the advice of a colleague who said, “Have Peyton’s parents do it.”

 
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Posted by on April 13, 2011 in ASD in the Schools

 

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Teaching Social Skills to Kids with AS as Opposed to Blaming Them

Ben was in science class with his sixth-grade classmates. Stuart was seated next to Ben, and he was moving, moving, moving the container of seeds closer, closer, and closer to the edge of “STOP THAT”. Ben said to Stuart. Ben’s paraeducator asked Stuart to put the container back to its proper place. Done. Back to science, right? Wrong. “WHY DID YOU DO THAT STUART?” Stuart smiles at Ben. Ben then wonders to himself, “Why did he smile at me? Is he laughing at me?” “WHY DID YOU DO THAT STUART?” Stuart does not answer. “WHY DID YOU DO THAT STUART?” Then, Ben’s gone. Removed from the classroom because with each “WHY DID YOU DO THAT STUART?” his anger increased with his volume level.

Five minutes after this happens, I receive an email (because I am seeing Ben later that evening) from his well-intentioned case manager. Parts of the story were recounted — basically, Ben yelled again, Ben was removed again, Ben is in trouble again — and then the bottom line, “I had a STERN conversation with Ben. He KNOWS he can’t do it.” Again.

He’s “known” for a long time that yelling in class was “wrong”. If a stern lecture was the antidote, then, I guess we’d all have the cure to autism. This teacher is a well-trained professional whom I respect highly. We’ve developed a great system of communication in order to provide more comprehensive, targeted support for Ben. But, when I saw him tonight, I knew I had a foundation to lay. Yes, Ben lacks the coping strategies for managing his anger more appropriately and we could continue to provide him more deep breathing techniques, another “recovery spot”, a visual cue for how to request a break. These are all great ideas, but they are too late and miss the mark.

The issue is WHY Ben is getting mad. Well, Stuart broke a rule. You and I might realize that this rule isn’t a commandment, but Ben lacked that frame of reference. He wanted that rule enforced, and, even more basic than that, we had to discuss WHY people break rules. (That is not a simple conversation, by the way. Ben asked for a Top 3; my take was: to have fun, because they can, and because it makes them cool. Again, though, try explaining each of those!) Then, we had to build an internal assessment system in Ben’s head so that he could decide WHEN it mattered if a rule was broken. Does it hurt me? If so, do this. If not, do that.

Contrast this process with: Ben, stop yelling. I NEED THE ANSWER. Ben, stop yelling. I DON’T UNDERSTAND. Ben, let’s leave the classroom. I DIDN’T DO ANYTHING WRONG. Ben, you can’t do that. I KNOW THAT BUT I DON’T UNDERSTAND WHY HE BROKE THE RULE.

Why not address these social issues? Is it too hard? Yes, it’s a long, winding road. Does it take too long? Cynically, I say yes, when we want no disruptions in the general education classroom. But, clearly, NOT addressing these social issues is only producing more. So, ironically, it takes longer not to address these issues. Ultimately, though, in Ben’s situation, the support staff missed the forest for the trees, having no idea of what Ben didn’t know they focused on what Ben didn’t do.

“Tsk, tsk, Ben, don’t do it again” is an ill-fitting bandage to a systemic skill deficit in ASD.

 
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Posted by on February 24, 2011 in ASD in the Schools

 

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Aspergers and the Transition to Middle School: A Big Hiccup

Imagine with me for a moment that you’re fifth-grade student gearing up for the big, dreaded transition to middle school. You have the holy grail, though, a suit of armor if you will: Two friends. You play Pokemon with one, and Club Penguin with the other. You don’t talk about those things at school. You’ve learned the hard way that you’d get made fun of.

But, you just found out that your friends will go to Middle School A, but you won’t. You will transition to Middle School B because there are too many students at School A.

Or, there aren’t enough students at School B.

Or, your ED/BD classroom is only at School B.

So, what do you do? Or, rather, what do the adults in your life do? Do they fight for School A, or do they go to School B with the appropriate LRE?

 
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Posted by on February 21, 2011 in ASD in the Schools

 

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