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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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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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Modifications to Ease Anxiety at School in Individuals with ASD

One of the most common co-morbid conditions within ASD is an anxiety disorder. Whether anxiety is part of the diagnostic make-up of the spectrum or whether anxiety warrants an “additional” diagnosis (hence becoming a co-morbid condition) is akin to the “chicken or the egg” dilemma. Because anxiety rears its ugly head in every way conceivable for individuals with ASD—often in ways beyond the neurotypical’s ability to comprehend—the ways in which schools target anxiety with special education services is critical to success. As most know, to qualify for any special education service that is documented on an Individualized Education Plan (IEP), a student must be medically diagnosed and it must be documented how this diagnosis interferes with his or her ability to learn and function within the school setting.

What to Expect from School/What You Won’t Have to Ask for

Looking through the lens of ASD, anxiety and special education is understood in broad terms, with typical, almost cookie-cutter accommodations made regularly. That is, schools recognize anxiety as a function of many behaviors, are willing to accept “anxiety” as a reason for inappropriateness, and, accordingly, can be convinced that a behavior is related to “anxiety” before it is related to many other symptoms. If you are noting a bit of cynicism, you are correct.

It is not that I wish to downplay the role of anxiety—it is an ugly monster. My frustration stems from the pattern that an explanation such as an anxiety disorder must become trendy, almost cliché, to be an “acceptable” reason to provide the services that should be given without justification. Think about the ubiquity of a visual schedule because children with ASD “learn best” visually (when some, in fact, learn better orally). In some senses, strategies (a new, meaningless buzzword I am hearing repeatedly in KC Metro schools) not necessarily designed to target anxiety are now being “anxiety-approved” without individualization. Yes, anxiety is part and parcel of ASD; no, it does not look the same in all. To say the least, this concerns me: A bunch of buzzwords are lumped together for the show of learning.

Cynicism aside, you can expect the following accommodations/strategies/intervention for anxiety to be “offered” with little hesitation by most schools.

· Creating and following a visual schedule
· Creating a safe place for the child during times of high anxiety
· Allowing time at the beginning of the day and the end of the day for transitioning
· Allowing the child time to use relaxation techniques at time of high anxiety (often packaged as part of the “5 Point Scale”)
· Using small group activities throughout the day
· Providing information on any changes in schedule and help the student cope when these situations occur
· Extended or altered passing periods in middle and high school
· Incorporating time for breaks/sensory breaks into the school day
· Adding extra time for test taking or allow the student to take tests in the resource room or library

Beyond the Cookie-Cutter: What to Ask for…With Fingers Crossed

What your child needs to combat anxiety during the school day has a lot to do with what triggers the anxiety in the first place. The acquisition of appropriate services becomes even more complicated when it affects your child’s ability to learn but does not necessarily impact a child’s academic abilities. One could read this in the following manner: The anxiety runs interference during initial, teacher instruction; one-on-one instruction with a teacher or, more likely, with a parent at home is a calmer environment in which your child readily learns the material. It follows, then, that a sign that anxiety could be playing a role in your child’s classroom-based efforts is how quickly work is completed at home.

Because there are infinite anxiety triggers for children with ASD, I have decided to compile not the most common strategies I have recommended to schools, rather the most individualized and hopefully useful ideas for you and your child.

· Issuing a Ticket: When a question has been asked and answered more than once, that is too much. This interrogation could be a sign of perseveration or rigidity or, often times, anxiety. I encourage parents and teachers to use a ticket system in which each “question” costs one ticket. When the tickets are gone, so too are the answers (even to new questions). It can be tough to ignore, but that breaks the cycle.
· Worry Box: Allow the child to compile all of his or her worries in strips of paper in a box; before lunch and at the end of the day, review the worries to assess how significant and appropriate they truly were.
· Paraeducator: Anxiety can affect the initiation and completion of work; this manifestation of anxiety can be serviced through the assistance of a dedicated paraeducator to teach the routine and skills necessary for starting work in a timely fashion. The paraeducator’s job is two-fold: a) to redirect avoidance behavior (“Joe, the task at hand is number X”), and b) manage Joe’s anxiety through reassurance. Paraeducators are not always the solution; sometimes, they can unwittingly exacerbate the situation. It is wise to develop a plan with the team and your child’s therapist/counselor as to how to manage the anxiety.
· Anxiety Chart: This can visual depict where and what anxiety feels like; it can also provide representations of different levels of anxiety. Such a chart should be used in all settings. One client shared that he felt like a “rat” (“something is scratching me, I’m a little upset”), so I suggested the paraeducator should reassure him of his safety and ability to complete the task at hand.
· Break after Recess: While this seems like giving a break after a break, many kids on the spectrum find recess to be highly stressful and anxiety-ridden. Some down time after recess (or even lunch) can derail anxiety and reboot for learning.

A glaring omission has been made purposefully on my part: the effects of anxiety on socialization. “Social goals” are typically not incorporated in IEPS, especially if socialization is the only area affected by the anxiety.

When Benjamin Franklin said, “Do not anticipate trouble or worry about what may never happen,” he obviously did not know an individual on the autism spectrum. “Anticipating” or identifying anxiety triggers and considering (not worrying) what might happen can help children on spectrum learn to manage their anxiety.

 
 

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