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.

 

Aspie Fashion

Patient Anonymous: Just Another Head Case

I’m willing to bet a lot of Aspies and people on the Spectrum will agree with me.

Or maybe not.  Diva, Fashionista, Spectrumicalista!

Do we care about clothes? Sure, we might find something that looks really cool but it ain’t be off The Runway!

We’ll also wear it for an entire week.  Plus, it’ll be with the other clothes we’ve been wearing for an entire week.

And we’ll always keep putting everything on backwards.

Will WordPress on my mobile FINALLY work?

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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?

 

Asperger’s: The Original Auto-Correct (That’s More Accurate than the iPhone)

You know how your iPhone has an auto-correct button, and sometimes it works and sometimes it fails miserably? (Mind you, I don’t really know this. I have a very unsophisticated mobile.) Well, oddly, that is exactly the experience of an Aspie.  Aspies notice many things an NTs brain seamlessly autocorrects, without ever reaching a level of consciousness or concern. But, they don’t just notice, they are impacted by these seemingly smaller differences that, in their mind, appears zeppelin-like. Take Cody, for instance, it’s not uncommon for him to start 99.9% of his sentences with, “Well, actually….” or “You mean….” or “That’s wrong….” or some other permutation of “You” + “Incorrect” + Grammar/Fact/Punctuation. These are the good moments, really, because there are times when he is stuck in thought, unable to think, act, move due to the processing of some inconsistency in his brain. Cody and I have spent countless hours developing ways for him to: 1. Not make these comments, or 2. Offer these comments more appropriately. We have spent more time, though, discussing impact — why these comments negatively impact his conversational partner despite his intentions to be helpful. Helpful. It is not uncommon for Cody to offer, “I wouldn’t want them to think that. If they did, they could get it wrong on the test. Or, they could share it with someone else who could believe them.” Auto-corrections to divert catastrophic outcomes.

There is an automatic response, a guttural reaction to his corrections — a sense of rudeness at best, egocentricism and narcissism at worst but more typically. Really, these are all synonyms for the omnipresent deficit of perspective-taking, the ability to understand the ways in which our thoughts and actions impact the thoughts and feelings of others. So, there is it, right — remedy the perspective-taking, build the alternative skills, watch the correcting reduce, and the misunderstandings fade away. If you read my blog with any regularity, you have a hunch I dislike and distrust this conclusion.

If we really understand and respect the rationale for the hyper-correctness — beyond the literalism, the rule-following — we see that there is an on-going search for meaning. Inconsistencies alter the very fabric of what a situation, statement, interaction mean. NTs look for inconsistencies to place a judgment, to push that inconsistency back into the hole where it belongs, to belittle it, to ostracize it, to make it change. (Mind you, not every NT is as pejorative as this portrayal.) Aspies are different. They look for differences to learn, to assimilate, to expand their understanding of a situation. There is an inherent irony that they often utter their sightings, usually for further clarification, only to turn the focus on them. NTs quietly stare, ruminate, and escape the label of impropriety. But our thoughts, our reasons for spotting the differences we see are far less altruistic than the Aspie who seeks not to judge, but to learn.

 

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

 

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?

 

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.

 

Namenda and Aricept: Not a Cure for Autism, but a Start

Doctors, parents, and researchers always seem to be looking for “it”: The cure to autism. While science seems to be years away from such a discovery, scientists have tapped into drugs intended to treat Alzheimer’s disease as a possible catalyst for brain activity in individuals with autism. Their out-of-the-box thinking has been rewarded with some positive, though tentative, results.

Dr. Randall Kavalier, a psychiatrist in private practice in West Des Moines, Iowa, prescribes Namenda to children who have autism or who suffer from brain injuries. Namenda, the brand name of memantine, is the first in a class of Alzheimer’s disease medications that blocks NMDA glutamate receptors. Dr. Kavalier states that Namenda clears up the interference among signals to nerves in the brain. Dr. Kavalier said that while elderly brains have long finished developing, children’s brains are still being molded. He said that, in many cases, after children swallow a few pills, “They light up. I mean, they turn on.”

Dr. Kavalier is not the first to experiment with memantine. Last summer, researchers at The Ohio State University’s Nisonger Center also used a drug normally prescribed for Alzheimer’s patients to determine if it will improve the communication skills of children with autism with positive results.

In 2001, Michael Chez, M.D., a child neurologist and assistant professor of neurology at Rush Medical School in Chicago published a study about the positive effects of Aricept (donepezil) on the language production in mild to moderately affected children with autism.

Have you tried this medication? Would you try it?

 

Smith v. Freund: Parents Not Held Liable for Murders of Son with Asperger’s

In a case filed (click here for Justice Raymond J. Ikola’s published opinion) on February 2, 2011, the parents of 19-year-old William Freund were held not liable for the murders committed by their son in California in 2005. Freund was diagnosed with Asperger’s Syndrome and lived as a dependent with his parents (defendants Karen and Dennis Freund). He shot and killed two people before going home and committing suicide. The victims were members of the immediate family of plaintiffs Denise Smith and her son, Brandon Smith. The plaintiffs sued the Freunds for wrongful death, alleging the defendants negligently supervised their son. Brandon Smith also sued the defendants for negligent infliction of emotional distress.

Orange Superior Court Judge Geoffrey T. Glass granted the Freunds’ motion for summary judgment, finding they owed no duty of care to third parties to control their adult son’s actions. Justice Raymond J. Ikola, who wrote for the appellate court, agreed, reasoning that “[t]he only inference the evidence reasonably supports is that defendants could not foresee William’s violent acts because they knew of no propensity or intention of William to harm third parties (as opposed to himself or his parents).” Ikola noted testimony from William Freund’s treating physicians about the absence of any substantial correlation between Asperger’s Syndrome and physical hostility toward others, and that the medications could cause “suicidal thinking in some patients,” but not “homicidal propensities.”The justice also acknowledged evidence of William Freund’s aggressive conduct toward his parents, but emphasized the record contained only one instance in which he acted in anger toward another person, and he had only lashed out in self-defense after having been struck first. Ikola further reasoned the evidence of alterations in William Freund’s personality shortly before the shootings “may have created a foreseeable risk that William might physically attack his parents (on whom he blamed his problems) or hurt himself, the behavior provided no forewarning that William might shoot and kill the father and sister of his only friend, or any other third party.” To impose a duty of care on defendants, Ikola suggested, “could cause greater harm in future cases by encouraging parents to disassociate from their adult children with chronic serious problems,” emphasizing “[d]efendants cannot be morally blamed for trying to help their son, rather than abandon him.” 

 

What are your thoughts on this case?

 

Don’t Get Caught Up in the Hype

Autism isn’t a fad. A cause celebre. A flag to wave. Autism has a face. Get to know one. You might be surprised.