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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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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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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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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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“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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Success for an Adult on the Spectrum: Volunteering turns to Employment

When people ask my what I “do” and my answer relates to autism spectrum disorders, the usual answers include: “Oh, that must be rewarding.” (Yes, always.) “You must have so much patience.” (Not really a requirement of my job, in my eyes.) “That must be very challenging.” (Not really in the ways people might expect.) “What do you think about vaccinations…?” (No comment needed in the Walmart line.) These responses usually lead me to be a bit quiet, a rare quality for me. I realized yesterday, that these responses also have led me to lose faith in the ways in which the community cares — beyond comments of empathy and compassion.

Yesterday, when my dog Penelope went to the veterinarian for an odd skin condition, we left with news that Bryan was hired and that John’s incredible talent had application beyond YouTube.

Two years ago, I met Bryan, a high school graduate with Asperger’s Disorder and cerebral palsy. Junior college was largely unsuccessful, but his job experience was impeccable. When I met him, he was working at a bowling alley, where he was employee of the month for several months running. He was tentatively looking for a new challenge in the form of a second job, an idea pushed partially by his parents and partially by his pride.

After several sessions discussing options, ideas, and the anxiety underneath such a decision, I met Bryan at my dogs’ veterinary clinic. The clinic had agreed to allow Bryan to volunteer. After a painfully short “orientation”, I could see in Bryan’s body language that the anxiety was growing and his interest in a new challenge was waning. He pressed on, three-hour shift by three-hour shift, learning the names of the pets more quickly than that of the staff. Bryan and I continued work together for another six months, after which I received “updates” from his parents via email and from my veterinarian during my annual visits.

Yesterday, when the vet said with a huge smile, “Bryan got hired,” I admit I was slightly slow on the uptake. “He arrives on time, does a great job, never complains, and is awesome with the animals. We thought, perhaps, he deserved a paycheck.” Before the gravity of her comments and Bryan’s achievement set in, I realized that she was beaming. She was as proud as a parent, as a friend, as I am. Without skipping a beat, I joked, “If I had known that finding employment for my clients was as a simple as having canine health issues, I’m sure Penelope could make that happen more frequently. If only you needed the computer expertise that John has to offer.” Equally without skipping a beat, the veterinarian said, “Talk to Nikki. Her husband owns his own computer repair company.” And I did. And John, a client who always tells me, “My job will just happen without planning,” now can say, “I told you so.”

I always attributed John’s comments to anxiety as well as long-standing depressed realism. We addressed strategies for managing anxiety; we addressed depression and its debilitating effects of little to no long-term goal setting; we addressed how anxiety and depression are components of Asperger’s Disorder and life-long challenges.We did not address what we both did not know — he had more faith in others than I did.

And to think I always told him that he did not have the life experiences to believe some of what he does. My own depressed realism was revealed and those life experiences I hold so dear aren’t all they’re cracked up to be.

 
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Posted by on September 4, 2010 in Educating the NTs

 

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