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Who Teaches NTs about #Autism? C.H.A.S.E.

Who Teaches NTs about #Autism? C.H.A.S.E.

The news? Autism Speaks? A random website? A friend of a friend?

C.H.A.S.E. can.

Community Help for Autism Spectrum Everywhere (C.H.A.S.E.) is a non-profit, grassroots organization founded by parents of an autistic child. The main initiative of C.H.A.S.E. is to promote autism awareness to neurotypical students and community members through education. This collaborative effort utilizes community partnerships and professional expertise to create unique approaches for autism awareness education.

Currently, autism organizations, medical professionals and the education system focuses on the autistic child and how to help them achieve their maximum potential. They do not take into account the neurotypical person, or student, who must interact daily with their autistic peer. People not on the autism spectrum can experience a wide range of emotions regarding their autistic classmates. From confusion to fear, the neurotypical student may have many questions and concerns.

C.H.A.S.E. assists students, teachers, schools and community organizations by building awareness through education. This type of awareness can help students understand the diversity of autism and reduce negative outcomes such as bullying and seclusion. Through education and building awareness, the autistic child is more easily accepted and the neurotypical student is enriched as well.

C.H.A.S.E. has partnered with an elementary school in Overland Park, Kansas to provide education and supports for classrooms
impacted by the unique needs of students with autism. We envision communities that value the diversity of
individuals with autism. What is our plan? C.H.A.S.E. has asked asked for school families who are willing to be identified as having autism and families willing to receive special advocacy training.

Last year, C.H.A.S.E. helped significantly reduce peer conflicts for one boy, after whom C.H.A.S.E. is named. A school counselor delivered a presentation prepared by C.H.A.S.E. explaining autism to his classmates. Several of these lessons helped develop an understanding of what Chase did and why. But, more importantly, peers learned how to help him.

 
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Posted by on September 28, 2014 in Uncategorized

 

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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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A Story from the Trenches: The Crap that Flies in IEP Meetings

I’m a believer in the concept of intellectual property. Of owning what I say in both senses of the word. Owning meaning it’s mine. It has a little JH trademark, instead of a TM or R. But, perhaps more importantly, owning in the sense that I say what I mean and mean what I say. No skirting issues, no backtracking, no caveats, no hesitation.

So, you don’t have to excuse me for a less-than-stellar, more than hopefully forgettable statement that slipped out of my mouth a few weeks ago. I’ve been reluctant to process it, to talk about it, and, yes, to own it. Sitting in an IEP meeting for a fifth-grader with AS with every possible therapist, educational professional, and school district figurehead, I became frustrated. No, I became annoyed first. 60 minutes, 75 minutes, then an hour-and-a-half of dancing in circles like we were all auditioning for Dancing with the Stars. Well, I have two left feet, so you might guess that my annoyance bred frustration that ultimately led to words sliding out of my mouth like Michael Jackson’s moon walk.

“Can we cut the crap?” I asked. Whoooooa, did that just happen? As I checked in with the special education director (yes, the big kahuna every parent wants in a child’s meeting until you have to sit and smell that fish) I realized that I didn’t need to pinch myself, her face provided the reality check. I began to think about the ways in which I could position this error, how I could make this meaningful for the team in relation to the child in some supremely deft manner. Fail. So, I was left with the emotions that had betrayed me and the trigger for those emotions: My inability to understand why a basic accommodation for dysgraphia– reduction of written output — was being met from the school district with such refusal.

The school district’s reasons were the usual song and dance I hear from uneducated educators (mind you, this is a VERY small percentage of educators): He’ll mis-use this accommodation; he’ll never write again; he can write when he wants to; he draws just fine; he NEEDS to be able to write SOMETHING. Well, I technically can knit, but you sure as hell don’t want to wear any of my creations.

And just when I thought the litany would never again, the big kahuna let the beans, though carefully not the crap, spill: “Well, Jeanne,” she carefully and condescendingly retorted, “We will have to write everything for him then.” This logic is an amazing form of educational catastrophic thinking. Good ole’ catastrophizing sounds more like, “Oh, I have an irregular spot on my skin? I have cancer!” So, when the big kahuna throws that dead fish at you, you don’t know whether to catch it — that fish is slipperier than it looks — or dodge it or, better yet, let it hit you in the chest and fall to the table with a smack for all to see, smell, and handle. That floppy fish is the crap.

I’d like to say that my ignorant comment brilliantly induced an AHA! moment in which everyone realized how ignorant and woefully unjust we were being to C.J. That an AlphaSmart, a visual cue card for a scribe, and a more caring and understanding attitude about the struggles of putting pen to paper suddenly and miraculously appeared.

All I can say is that I learned something, something sad. The passion and the dedication that spewed forth those words from my mouth was met by a can’t-do attitude that has ruined C.J.’s elementary school career. Unfortunately, that can’t-do-attitude piggybacked on my comment, my lack of professionalism, as an excuse to not make very basic modifications. This IEP team didn’t resemble a school of fish. No, it was a pack, with its members meant to be silent.

Now, that’s crap.

And so what if we did have to write every single word down for him?

 
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Posted by on February 2, 2011 in ASD in the Schools

 

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