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Monthly Archives: September 2010

Mindblindness: The Case of the Missing Filter

Mindblindness is a term that Simon Baron-Cohen has used for years. Baron-Cohen coined this term to describe the difficulties individuals on the spectrum have with guessing, predicting, and inferring the thoughts and actions of others. To tell you the truth, I don’t even know how I do “it”, where “it” came from, or when I’m doing “it”. Perspective taking is like breathing — I take it for granted until I really think about it, then I assume control over it for a split second, only to somehow lose conscious control again in a few short seconds.

When I was asked today how to teach “it”, I was silenced. How do you teach something you never really had to “learn” or “practice” to do? Yes, there are ways to dissect the skill into its nonverbal and verbal communicative components, looking for changes in tone, the height of the eyebrow, the size of the smile, but, at the end of the day, those are small sprinkles of sugar. Only when they completely come together do they make a sugar cookie.

Maybe I am alone, but most of the time, I give little thought to how I feel and what I actually show — are those messages congruent or discordant? Did I purposely make them so in order to fool another or to protect myself? I acknowledge giving more thought to what I think and what I actually say, as my big mouth has a tendency to get me in trouble.

I’ve “learned”. But, wait, haven’t many, many parents approached me asking for a “filter” for their child? Duct tape is obviously out of the question, so a filter must be the next humane choice (sarcasm). When and why did I develop a filter, and why can’t I help others construct one? I could point back to a very formative time in my life when I retaliated on a the neighborhood bully. My parents had just planted a new tree, and he came along and RIPPED a new limb right off. My parents were upset, and I sensed a chance to repay him for the grief he had put upon the downtrodden of the street. What did I do? Well, I walked down to his house, picked up his Playskool basketball hoop, and tossed it through his front window. Of course, that is not the end off the story. His parents and my parents had a bit of a pow-wow, and we were both told to apologize. Inside, I knew my mom was proud of me, so, when it was my turn, I said, “I’m sorry……not”. Well, you might imagine that stirred the pot up again. Later that night, I remember my mom saying, “All you had to do was fake it. Why couldn’t you just do that?”(And, I’m supposedly NT!)

I couldn’t do it because I truly wasn’t sorry and I hadn’t learned the social value of faking an apology to expedite a situation that, truthfully, was meaningless. But, even then, I knew better — meaning I had developed the ability to mind-read but was simply setting it aside due to immaturity. I set “it” aside less these days, now that I call myself an adult, but I’m still not sure that leaves me in a position to foster it in others.

So, for now, I’m left trying to find those seminal moments for clients. Moments when they figuratively (or literally) break a window, in hopes that I can help them recognize they aren’t as mindblind as we might all want to think. But, perhaps, I’m being mindblind in thinking that.

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When is a C+ an A+?

More often than you might expect.

Excepting the best of yourself is healthy and motivating, right? All individuals should set high expectations. But, how high? How do we know when they are needlessly high? So high that they cause more distress than success?

I suppose for some of us it’s simple to realize. “A 98% is the same as a 100%.” “That is close enough.” “I did my best.” “Hey, I’m failing at this and I don’t need to.” But what happens when you lack the perspective to compare your best, your ideal, and your actual performance? What happens when rose-colored glasses are replaced by blinders?

I often forget how high of a standard the individuals I work with hold for themselves. They often have a tendency to ace or fail. They either get it better than anyone on the face of the earth or don’t give a rats’ you know what, at all. What is most dangerous is when they DO “get it” but don’t think they do — not to be confused with, not getting it but thinking you do. I know, I know, all of this “getting it” and “not getting it” is getting rather, well, annoying. The bottom line is this: Individuals with Asperger’s hold themselves up to an ideal that is often unattainable such that their anxiety, self-esteem, and other mental health variables are negatively impacted.

The question is: How do we help them change that? I, for one, don’t want anyone I care about to experience life feeling as though they must be the perfect locker-opener, the perfect street-crosser, the perfect passer-outter. So, how do we establish what matters? All of the cognitive behavioral therapy techniques in the world aren’t addressing this issue.

How have you helped yourself or loved one realize the beauty of imperfection?

 

Child Abandoned and Assaulted; How We Can Help

“Parents gave up autistic son.” The title of a recent article from The Age.

Some excerpts: “But within three months of entering the care and protection of the state, the parents were told that their boy had been sexually assaulted by a teenager who had been temporarily placed in the same house.”

And: “She recalls the reasons why they gave him up. The nights in which he kept them awake, ”bouncing off the walls”, smearing the walls with his faeces, rocking backwards and forwards, moaning and wailing.”

Finally: ”They [the state] had guardianship of him and they failed him,’ Anna [name changed of the mother] says now.”

Do you want to know what my immediate reaction to the mother’s statement was? You were his parents. You failed him.

But, then, I realized that this story is not about blame. I’m not going to say parents frequently or often give up their children. But, we all know, it has happened before. Unfortunately, we also know that children are sexually assaulted, in their own homes, in placement homes, in foster homes. We feel — I feel — especially aghast because this child had autism. Yet, we all know that raising a child with autism is difficult, to say the least. Unique challenges. Unfathomable costs.

Is there something to learn from this situation? They struggled in ways that many families have and will with children on the spectrum. This family clearly felt alone, isolated. They appeared to lack connections to other families with children on the spectrum. They needed help for themselves, their NT children, and their boy. Who’s job is it to connect a family like this to the rest of the autism community?

I, for one, would like to help in one small way. Let’s start a list of online resources that allow parents to directly reach out to help. Not the countless pages of diagnostic criteria, or the possible cures that seem far away. No, let’s make a list of sites that can, in one click, reach out one hand and grasp another.

If we don’t have that type of resource, we better get our act in order. Join me in sharing your favorite sites.

 
 

What People are Saying about Autism Speaks: Fact or Fiction?

To be honest, I’ve always viewed Autism Speaks in a negative light, an organization that seeks mostly to cure autism and rarely to embrace the strengths and uniqueness characteristic of all individuals on the spectrum.

I decided to pose this question on google.com — I know what you are thinking: some “real”, high-quality research I performed (sarcasm). Despite my rudimentary research, I found this very question posed on a favorite site of mine: Wrong Planet. On this site, I found some very interest opinions.

“Autism Speaks is almost entirely bad. Even the PSAs paint autism as a horrible thing, something that we have to get rid of and squash out, something that breaks up families, turns children into unresponsive automatons, costs money, and ruins lives. They are overdramatic, and in the name of raising awareness they make people believe that a life with autism is hopeless, joyless, and a burden to everyone around you,” says Callista.

Further, DandelionFireworks believes, “Autism Speaks is in it for the money.
Honest curebies make me laugh, but they at least have ideals that they cling to. They often truly want what’s best for their children. I’ve seen that firsthand, and I’ve seen the good that curebies can do. Autism Speaks, however, doesn’t care about our welfare. They just want our money.”

I could fill countless pages with not-so-flattering commentary about Autism Speaks. On the other hand, I did manage to find this:

“Autism Speaks funds the research study I’m in at the U of Pitt,” wrote SuperTrouper. “They’re using Cognitive Enhancement Therapy (attention, memory, and problem solving training on the computer plus small groups to improve social cognition) to help adults with autism. One of the researchers told me that they do not seek to cure us but to make our lives easier. I don’t think they’ll rewire our brains in an 18-month study, but they’re certainly not harming us and it just might do some good. Right now the study has 14 people as the pilot, but soon it will have I think 60, and that’s the part the Autism Speaks is funding. Just making a point that things aren’t really so black and white, and as such, this organization is not all bad.”

My overall impression is that parents, newly diagnosed or not, are highly supportive of Autism Speaks. Auties and aspies seem less excited about the possibility of losing (read “curing”) what defines them as a human being. I’m not sure if I can make an appropriate comparison that NTs will understand and auties and Aspies will respect. So, perhaps you can?

 
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Posted by on September 28, 2010 in ASD in the Grand Scheme

 

The Power of Words: “How will you use your power?”

“149 talk about the 1 with autism. They are the 1. We take a break. They go off task. We have hobbies. They self stim. We change our minds. They have short attention spans.”

So begins The Power of Words: How We Talk about People with Autism Spectrum Disorders Matters! written by Judy Endow, MSW, an individual on the autism spectrum and a parent of a grown son on the autism spectrum, The Power of Words thoughtfully draws from her own life experiences in a 12-minute DVD. Her son Daniel composed and performed the background music in The Power of Words.

“When you have autism you are not suppossed to voice a different opinion, and if you do – they say you are non-compliant.”

“I’m not allowed to insist. I have autism. I tantrum.”

“Perhaps a person with autism is not allowed to love anyone.”

“Is it bad of me to want friends?”

“I don’t care. I love my fixation.”

“What is normal?”

“How will you use your power?”

I’m using my power to compel you to check out this DVD.

 
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Posted by on September 27, 2010 in Educating the NTs

 

My Top 10 Opinionated Facts about ASDs

The list compiled below are personal facts not substantiated by data, research, or any other autism-oriented organization.

1. ASDs have and likely will always exist within humanity. Prior to Kanner and Asperger, we obviously had other names — like “quirky” — that only rendered it impossible to give these individuals their credit for the gifts they have given our world.

2. Individuals with ASDs are fiercely proud of their diagnosis. They should be. Taking it away is akin to asking for an “unwanted” limb.

3. NTs are not superior to anyone, let alone aspies and auties.

4. The idea that individuals with ASDs lack empathy was obviously a “symptom” “noticed” by an NT who was wanting in the area of empathy him/herself.

5. Etiology should not be as big of a priority as awareness.

6. Online dating should be taken more seriously for individuals on the spectrum looking for a significant other.

7. AD/HD and anxiety are part and parcel of an ASD, not simply co-morbid conditions.

8. You have used something today made possible by individuals with autism spectrum disorders.

9. Person first language is a must, not an option — even on Twitter, where space is limited.

10. The only autism epidemic is one of intolerance.

Do you have any unsubstantiated facts that you believe? Clearly, I do.

 
4 Comments

Posted by on September 27, 2010 in NTs on ASD

 

Do I Lack a Sense of Humor…or is “Induced” Offensive?

 
5 Comments

Posted by on September 27, 2010 in Educating the NTs

 
 
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