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Asperger’s Isn’t….

The “joke” that the radio deejays portrayed it as today

The “disease” that some parents don’t want their kids to “catch”

Ass-burgers, Asp-burgers, AUH-spbergers

A crutch, an excuse, an “out”

Cure-able, reproachable, defamatory

The “geek syndrome”

Something to be taken lightly

Just diagnosed in males

A social disorder

Your uncle who didn’t hold a job, was a recluse, and collected toy helicopters

A diagnosis for everyone who is socially awkward

In need of change, eradication, alteration, or fixing

So unrecognizable that we are incapable of seeing ourselves

 
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Posted by on September 30, 2011 in Uncategorized

 

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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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Explaining AS to Parents of Second-Graders in 500 Words or Less: How’d I Do?


I am working on a letter to the parents of one of my client’s classmates. “Joe” is a second-grader at a local parochial school. In one page, I have to accomplish the unthinkable — educate and teach acceptance. How did I do? (Remember: ONE page!)

“Dear Parent,

Today Joe and his parents talked about Asperger’s Syndrome (AS), an autism spectrum disorder. We want to provide you some information about AS, which is often called an “invisible disorder” because the individual looks like everyone else. He’s often intelligent and witty, but he thinks, acts, and speaks very differently. Although no two people with AS are alike, we want to point out some specific traits.

Rule-Governed: Kids with AS are literal and thrive on rules. Structure and routine make learning easier. When rules aren’t followed, something seems “wrong”, like a speeding car in a school zone. It just needs to be “fixed,” something kids with AS do without thinking. They transform into a bossy police officer, telling kids (and even adults) what to do and what not to do.

Order and Routine: Hitting, slapping, and yelling are some of the behaviors individuals with AS impulsively use to restore order in a situation. Typically violence is not intended. The individual feels anxious or frustrated and cannot always verbalize his emotions, so he attempts to return the situation to routine as soon as possible.

Sensitive: Smells, noises, and touches can trigger a “fight or flight” response. Accidental contact, like a bump, can “feel” like a hit to Joe because he does not read someone’s intent. At the same time, kids with AS struggle to modulate their own volume and control their bodies. They yell at others who are shouting, and they shove or run away from those who are too close.  If this confuses you, just imagine how confusing this is for Joe.

“Mindblind”: We take for granted how easily we can “step” into another’s shoes when needed. Individuals with AS innately lack the ability to take the perspective of another, inadvertently making them appear rude, selfish, or less intelligent. Kids with AS have to be taught not only how but when to think about others.

“Faceblind”: It is well-known that nonverbal communication is as important, if not more so, than what we say. Individuals with AS do not innately read facial expressions, tone of voice, gestures and body posture. You can just say your son or daughter’s name with a particular tone or you can “give them a look”, and they immediately “know” what you mean. Because Joe’s brain misses this information, he misses more than just what someone is saying to him, he also misses why.

Book Smart: Individuals with AS often lack common sense. This plays out most distinctly with their ability to socialize. They want friends but have no idea how to do so. Without direct instruction and countless opportunities to practice, appropriate behavior and socialization can be very challenging. They are prone to relentless bullying.

Your child has likely come home with observations about Joe that fall into one of these categories. Your initial inclination might be to tell your child to avoid or ignore Joe, after all you don’t want your son or daughter hurt. This is perfectly understandable but, unfortunately, will only exacerbate Joe’s struggles to learn how to interact. Joe is diligently working at school and at home on how to behave more appropriately. To help Joe, we ask that if your child comes home with a complaint, you respond in this manner: “Just like ________ is tough for you, ___________ is tough for Joe.” We ask you to reinforce that idea that everyone has struggles, and, unfortunately, Joe’s struggles are easier for your son or daughter.

If you would like to read more about AS, we recommend the following websites:

Autism Society of America: www.autism-society.org

ASPEN: www.aspennj.org

OASIS: www.aspergersyndrome.org

 
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Posted by on May 1, 2011 in ASD in the Schools

 

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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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What Makes Someone “Aware” of Autism? A Baby Bump?

No, I don’t have children. Not that you asked, but, maybe, you were wondering. Or, maybe you don’t care in the slightest about the outcomes of my procreation habits, for which I thank you. No offense, but they are none of your business.

Or are they? Many, many, many people seem to believe that the answer to that very question is critically germane to my business, which most of you know by now, is an autism spectrum specialist. If you read my blog with any regularity, you know that a business is not what I consider my life’s work and passion, but I digress.

Perhaps because I am a woman, perhaps because I am a relatively young woman (30 next month!), perhaps because I arbitrarily look fertile or motherly or something, I am asked, “Do you have children?” frequently. No, wait, what’s more than frequently? Well, too much.

Sometimes, the question appears to be a moment of commiseration. “You know [insert something frustrating, annoying, embarrassing about having children], you have children, right?” Other times, the question is based on faulty pseudo-logic: “You [pick one of the following: work with, have patience for, seem to enjoy, have fun with kids], you must have some of your own.”  Most times, though, this question is wielded as a secret weapon that is, in the holder’s mind, a trump card. I don’t have that card in my deck, which means I lose. Game over. Don’t pass go and do not collect $200.

Two years ago, I met a family for the first time with their seven-year-old son. During the developmental history, a question and answer data collection procedure (not a time when I provide thoughts/opinions/recommendations — meaning, I had yet to open my mouth to do the helping portion of my job), the mother began looking around my office. Fairly typical and expected, especially during an initial consultation. My office is filled with toys, games, Mini Cooper Hot Wheels, dinosaurs, bean bags, and books. As her perusal continued, I became curious, following her line of sight. My degrees, awards, and other frame-worthy, credibility-indicating items are strategically in full view. Those were not the point of interest. What’s left in my office? I remember thinking. Well, nothing. Except me.

That realization hit when she made eye contact with me. It was like that stylized, cliched “high noon” showdown. You know, when two cowboys shuffle down a dusty road, hands quivering near their pistols or, I guess in this situation, baby rattles. Well, in this showdown, I didn’t have a Tickle-Me Elmo to counter with. “You don’t have children. You don’t have a ring on. You have no pictures of family. What makes you qualified to work with kids?” I stood my ground but shot blanks. They opted to not work with me.

For me, there has always been an inherent irony. Not having children has allowed me to work later (which means MORE) and to devote time and energy to my clients in ways that might be diminished if I had my own children. Irony aside, the idea that motherhood makes me more qualified is one that has never resonated with much integrity. In my mind, it’s like requiring an auto mechanic to have a car in order to provide you service. Hell, it’s even better if the mechanic has the same make and model. (I’m still searching for who can service my customized Mini Cooper.)

I’m not asking for parents to settle for the childless, nor am I trailblazing a Child Left Behind policy. Rather, I’m looking critically at the comparisons that can be drawn between ASD and NT. The countless developmental histories I have completed (in clients who have stayed and left) document how the trajectory and experiences that make up the “life” of a child on the spectrum are inherently, (obviously) diagnostically different from that of a neurotypical child. Yet, it is that very neurotypical child that others want me to have (as if I have control over that). That child would not help me understand my clients in ways that parents assume or hope.

On the flip side, I do think my clients help me understand all children and, for that matter, all people. I guess, when I do have a child, I have to make sure he or she is on the spectrum. I can frame the birth certificate and hang it next to my diplomas.

 
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Posted by on April 14, 2011 in Uncategorized

 
 
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