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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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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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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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Words with Friends…and Asperger’s Disorder

We are two weeks plus into the school year and the honeymoon phase is about over for most of my clients. They’ve made the transition, mostly without incident but not without anxiety and struggle, until this week. The emails and phone calls have started to trickle in with small blips that have sent them to the principal’s office, to the buddy room, to the safe seat. The recurring problem area this year relates to language, specifically what others deem “violent” language, both verbal and nonverbal. “I’m going to kill you”. A fake gun out of three fingers to one’s head. “Shut up or else.”

I know, and Tony Attwood has documented, that individuals with AS tend to use graphic language. Blood, guts, boogers, vomit. I think it relates to their visual strengths, as these words intensify their (and the listener’s) ability to imagine what is happening. NTs use these words for effect, for emphasis, for attention, purposes that are variations on the theme of storytelling.

Aspies use these words initially as echolalia. A video game, a movie, a peer, a parent, a sibling utters “I’m gonna kill you if you…” and the phrase resonates, perhaps with a special interest (i.e. video games, Civil War, combat, guns, the human body), perhaps because of how the words themselves sound, and perhaps due to its efficiency at producing a response. “I’m gonna kill you” immediately can mean so much — “whoa! back off” or “he means business, I better take him seriously” or “this could be dangerous”.

After the initial repetition comes the trial period. We’ve moved past novelty into the world of “Man, this really works.” The complicating factor is not knowing why it works, only seeing the end result. If someone is bullying you relentlessly and suddenly rolling around on the floor while mooing like a cow is an effective strategy, you’re likely not going to stop to analyze the rationale for its effectiveness. Well, not initially, and — what’s more — you have the power to process all of the core elements of a situation (social, nonsocial stimuli) that enable your social and environmental understanding. Our Aspies are not always so endowed. We roll and moo, they turn a phrase, it’s all the same: Mission accomplished. But, we all know it’s not that simple. The fallout indicates that the weight of the words is more than Aspies could ever fathom.

Case in point. I received a call yesterday from a local school with some of my favorite staff in the area. As the story goes, my client was unhappy with the topic of conversation in history class and used a piece of wire he found on the ground to make a pretend gun to pretend shoot at his classmate. He tells it very similarly. So, we have the same basic plot with the same basic ending, but the nuances and the subtle themes that provide the meaning to our story are far less developed. When I asked him “why” this mattered so much, his response was, “It’s mean.” Well, yes. Putting a gun to someone’s head is a mean gesture, but why? “Because I might kill her? But I wouldn’t. I won’t. I’d never.” Interestingly, another group member (who has struggled with this issue himself) said, “But they don’t know that. Our conditions make us vulnerable.”

We could say case closed on this page — the boys recognize that their words carry meaning due to the fear of a threat, due to the possibility of follow through, due to what another group member cynically called “paranoia”. The boys recognize the unfortunate life lesson that Asperger’s, and other “conditions”, bring stigma, judgment, and suspicion. But, I wouldn’t be satisfied with that rendition. It would be like Twilight without Full Moon, Harry Potter without the Deathly Hallows, War without the Peace. It’s not as though they emerge from the womb toting guns, talking like sailors, and ready to take no prisoners. On the contrary, these boys cringe when another says “pissed” or “crap”. These boys apologize for hurting a bug, for breaking a Lego creation, for saying something mean to their parents. They have deeply embedded rules about right and wrong. So, how does a make-shift gun and a threatening phrase sneak past their judgment?

I’m convinced that the answer lies more within the NT world than the ASD world and things get lost in translation. I’ve been asked to verify, “He won’t kill anyone right?” In essence, he says it without intent, right? Talk about a loaded weapon…I mean, question.

At dinner last night, I sat with an old friend and a new acquaintance. I listened to how we described things. “It kills me to think….” “If that doesn’t happen, I’ll have to….” “Shut up!” So, what’s the difference? I think, for now, two things (and I’m sure there are more). The first relates to delivery. We were laughing, joking, sharing, and confiding. Their was no anger, no fear, no suspicion, no concern. We sat in a large restaurant saying these things — just like most middle schools sit in a large cafeteria and say these things — without so much as raising a flag. No one gave us a side-long glance, no one called the manager, no one escorted us out. So, it could lead one to think that if you are joking and happy, these comments become okay. That was my initial thought, and I don’t entirely think it untrue but I think it’s not that simple.

The more important component is one of relationship. A relationship brings history, personal understanding, shared knowledge, and shared experiences. When I hear my friend say, “I’ll kill you if you tell her…” I know that she is not going to pick up her steak knife to stab me, push me down the stairs as we walk about of the restaurant, or try to commit vehicular homicide. As such, I laugh. She laughs. And, the new acquaintance begins to learn, to build a catalogue of how we interact. This catalogue acts as a reference guide letting her know what it “okay” and “not okay” — at their most basic levels. My friend and I have already created this catalogue but we add a new chapter and a new index entry with the new acquaintance. The relationship expands. It does not diminish due to our language. In fact, the language helps it grow.

So, why does this paradoxically simple and complex process fail to happen with Aspies? That is a loaded question that I should erase and revise so as to avoid easy, obvious, needed backlash. Interestingly, though, I would wager most NTs believe that relationships do, in fact, fail for those with ASD. I know better. I’ve seen better. I’ve seen these very boys joke with each other about “killing” and “shutting up” and “bombing” without so much as a blink of an eye, raised blood pressure, red alert. From them or from me. We have that shared history together in which we feel safe, free, and comfortable. Maybe the better question is why does it sometimes succeed, sometimes fail? Maybe it’s an Aspie-NT phenomenon, not an Aspie-Aspie/NT-NT issue. I’d like to think that the chasm between us isn’t so wide, so desolate. As a matter of fact, I know it’s not.

I go ’round and ’round with this issue. Trying to help them push past their impulsivity to utilize a more appropriate phrase, while all the while they hear the echoes of this language in the hallways, the classrooms, the locker rooms, and the lunchrooms. It seems to be simply words with friends…until spoken by an Aspie.

 
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Posted by on September 8, 2011 in NTs on ASD

 

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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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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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