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Executive Functioning in Low-Functioning Autism

  • Posted on December 23, 2011 at 8:00 AM

Recently Gavin wrote about executive functioning.  I started with Willy, and now I’m going to explore executive functioning in low-functioning autism.

In the first post, I provided a recap of Willy’s development on the autistic spectrum.  Now, here’s Alex’s:  Unlike Willy, Alex never developed typically.  This means, in short, that Alex didn’t regress, because he never developed the social and communication skills that Willy demonstrated early on and lost.  Throughout Alex’s life, he’s been delayed.  These delays are often regarded as a combination of autism and cognitive disability, but the latter has not been proven.  It is often assumed simply because it hasn’t been disproven.  Alex’s disabilities are very visible.  His inability to speak effectively for communication, his body movements, his toe-walking, and his vocalizations and mannerisms all make sure that Alex stands out as someone who is different.

With regards to Alex, there is so much focus on other deficits that executive functioning gets short shrift.  For example, Alex has no effective means of communication.  This is a big, huge barrier, a serious disability which has far-reaching implications.  Every aspect of Alex’s development suffers because of the communication barrier.  Thus, the communication challenges get a great deal of attention.  Added to that, Alex lives in a state of near-constant dysregulation.  This, too, gets a lot of attention.  Most of the therapy and educational services Alex receives focuses on one or the other or both.  A fraction of our energy is focused on building independent living skills, like getting dressed, getting his coat and shoes on, putting things away, and completing routine chores.  To a certain degree, these skills often involve fine motor skills, which is another area of deficit.  But to a greater degree, all these skills rely on executive functioning skills.  And, lo and behold, when I stop to think about it, Alex has fewer executive functioning skills than Willy and fewer accommodations and supports to compensate for that deficit.

See, for Willy the example of “get ready for school” used in Gavin’s post describes his need to break down regular tasks to a more basic level of instruction.  I can tell Willy “It’s time to get ready for school” and then break that major activity into minor tasks like, “It’s time to wash your face and your hair, then take your shower” and “Get dressed, then come put on your shoes.”  If I were to try that sort of thing with Alex…well, just forget about that.  It’s not going to happen.

For one, Alex is still in diapers and he doesn’t change them himself.  And that’s where things get kind of…well, once I seriously start thinking about this, I’m not proud of my responses.  You see, I coach Willy through his morning routine.  I provide support to help him get himself ready.  I haven’t been doing that with Alex. I’d just do it for him.  On the surface of things, it would just take too much time and too much effort for me to coach Alex through these activities.  Then again, it’d been a long time since I’d tried, since it’s easier to just do it for him.  But that doesn’t help Alex build skills nor does it give him the opportunity to exercise the executive functioning skills he has. 

So, I tried an “experiment.”  Instead of doing everything for him, I broke the tasks down to a level Alex could do independently.  I changed his diaper, and then, instead of dressing him, I handed him his each article of clothing as independent tasks.  “Put on your socks.”  When he’d complied, “Now, put on your pants.”  Then, after he’d done that (and gotten some help with the snap and zipper), “Now, put on your shirt.”  At that level of instruction, and with some assistance on the fine-motor tasks, he was able to dress himself.

And we haven’t even gotten to Ben yet.  See, often I describe Ben as being in between Willy and Alex.  That’s mostly the focus on language and sensory management.  In those areas, Ben is between Willy and Alex.  He doesn’t talk as much as Willy, but he’s a more effective communicator than Alex.  He’s not as regulated as Willy, but he’s more regulated than Alex.  But, when it comes to executive functioning, Ben is still further behind than Alex.  I just do things for him.  And, to a great degree, that’s not likely to change any time soon, because he’s still working on things at a more basic level.  With Willy, it’s “get dressed, then put on your shoes.”  With Alex, it’s “put on your pants, then put on your shirt.”  With Ben, it’s “pull the shirt over your head, then put your arms through the sleeves.”

The take-away lessons here are:

1) Executive functioning deficits apply to low-functioning autism as well as high-functioning autism.  Thus, parents shouldn’t scoff at “executive functioning” as a real sign of disability, instead they should look at their child and consider how they can help him or her become more independent by providing accommodations and support at their child’s level regarding executive functioning tasks.  They should take a look at their child and the ways they help their child to see if they’re building skills or taking the easy way out.  They should take a moment to consider whether sensory dysregulation is the culprit for the most recent meltdown or whether it might be confusion or frustration with regards to executive functioning.  Don’t let the invisible fall to the wayside just because there are more visible disabilities; don’t assume they can’t, just because they require support and accommodations to succeed.

2) More than that, one thing I think we should all be considering more seriously is if managing deficits in executive functioning are best served by coping mechanisms and accommodation strategies, or if there is a skill-building aspect to it that we haven’t properly considered (or that I’ve never seen properly considered).

Is there another way of looking at these abilities (another context or frame they could be put into) that would translate them from the typical mindset to an autistic mindset?  For example, visual schedules are one of the accommodation strategies that are used.  Is there another level we could take that to that would translate that accommodation into an independent skill that is developed and then self-sustained?

*Please note that I will be taking a week off of blogging.  I'm going to have an at-home vacation.  My next post will be up on Jan. 2, 2012.  It's already written and scheduled, so I can't forget.*

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Executive Functioning in High-Functioning Autism

  • Posted on December 21, 2011 at 8:00 AM

Gavin recently wrote about executive functioning. After reading his post, I couldn’t help but think that much of the focus on executive functioning is in relation to high-functioning (or low-visibility) autistics. Parents of low-functioning (or high-visibility) autistics tend to dismiss or downplay the disabling aspects of autism among those with high-functioning or low-visibility autism; sometimes, it’s these individuals themselves who insist autism isn’t a disability at all. Partly in reaction to this, high-functioning or low-visibility autistics tend to focus on the disabling aspects of executive functioning differences. So, in reaction to Gavin’s post and the greater dialogue, I wanted to take a moment to consider executive functioning as it manifests in my household of three boys with autism who are at very different functioning levels. Due to the length of the original post, this will be a two-parter.

I’m going to start with Willy. For those who aren’t regular readers, here’s a brief recap: When Willy was first diagnosed he displayed classic regressive symptoms of autism, meaning that he developed more-or-less normally and then lost many functioning abilities, including the ability to communicate effectively. In retrospect, there were warning signs regarding his development prior to this regression, but as we were not familiar with autism and autism awareness had not progressed to its current levels, these warning signs were delegated to the “wait and see” category of concerns. When Willy started to regress, these concerns took on new meaning and the search for an explanation began. Willy’s resulting diagnosis is autism. At the time of his diagnosis, his autism was considered severe and institutionalization was recommended. Willy turns thirteen today, so this wasn’t all that long ago. With the help of several therapies, and due to Willy’s own development (which is beyond our control, obviously), Willy has regained the skills he lost. He is now considered fairly high-functioning, but a great deal of his functioning ability is due to the adaptations and accommodations we’ve been able to make for him.

On the surface of things, Willy appears very high-functioning. He talks, attends classes with his peers, pursues multiple interests, uses his imagination, and tells stories. He has friends. He’s well-liked in school. On the surface of things, executive functioning skills seem to be his biggest weakness. Getting through his day requires quite a bit of coaching in regards to scheduling his day and scheduling the different steps in each task. Getting his homework done is a hard-won achievement, which heavily relies on a physical schedule of assignments and a “learning lab” which is kind of like study hall, except with extra help. On the surface of things, all the work we put into building and maintaining his executive functioning skills helps us compensate for his disability to the point that his disability often seems invisible to us.

But that’s only the surface of things. As high-functioning as Willy is, when you put him next to his typically developing peers, especially those at different age levels, you can see delays in reasoning skills development, social skills development, and language skills development; and, we’re back to the pervasive developmental disorder. In time, Willy’s reasoning, social and language skills might catch up. They might. But there will always be differences in these areas. Willy will always think, socialize, and speak/write differently. Executive functioning is a bit tricky. It seems less emphasis is put on developing executive functioning skills, i.e. translating these skills into a do-it-yourself set of abilities that Willy can understand, and more emphasis is put on providing him with coping mechanisms, support, and resources to compensate for this disability.

There are two basic take-away lessons in this:

1) Willy’s “invisible” disability becomes quite visible if you compare him to his typically developing peers. The invisibility is most apparent when comparing him to his brothers, who have fewer functioning skills. Furthermore, his “invisible” disability becomes very visible if you take away the supports and accommodations that make this level of functioning possible for him. Thus, it would be ridiculous to claim that Willy isn’t disabled simply because Alex and Ben are more disabled.

2) How we approach executive functioning seems to assume that it is an ability (or disability) and not a set of skills that can be developed and internalized, with appropriate adjustments. The general approach seems to be one of accommodation and support; whereas, the approach to Willy’s language and social development seems to be one of skill development and support. I’d be interested to know how wide-spread this assumption is and why it is made.

Are executive functioning differences a matter of life-long disability? Or is it that we have yet to discover and apply in the general autistic population the proper approach(es) to building skills and providing support until those skills are self-sustaining?

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Imminent Burn-Out? (Part 4—The Next Word and Resolutions)

  • Posted on November 21, 2011 at 12:00 PM

Again, I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I panicked.

The threat to autistic children is real. The threat to autistic adults is real. Combine the two and the threat becomes even stronger. And these threats apply directly to my family. This is why I fight. This is why I advocate. It’s not the only reason, of course. If my family was suddenly safe from all future threats, if we got a pass on all the discrimination and prejudice, well then I’d still fight—because nobody should have to face this kind of threat. But we do. It’s real. Right now, my boys cannot advocate for themselves on this level. They cannot face down CPS and win. They shouldn’t have to; I shouldn’t have to. But I had to and I did, but if I had to do all over again, with the loss of functioning that Rachel described, I would lose. And that possibility is incredibly scary. The consequences for my children are terrifying.

Reading Rachel’s words, I felt this terrible ticking clock hanging over my head. I drive myself hard—too hard. I know that. Everybody who knows me (in-person) knows that. Periods of burn-out, of being too tired to keep up, of running out spoons, of hiding in my basement office to avoid the very loud noises my children make when they’re all playing in parallel—these things are inevitable, and as long as Mark and I are a team and I can keep up my end of the bargain, they’re just part of the flow of our lives.

But what if I couldn’t keep up? What if it wasn’t temporary? What if it stretched on for months or years? Pardon my language please, but my thoughts could best be summed up: Oh shit! Is that going to happen to me?

I kept reading. I finished The Uncharted Path and moved onto Blazing My Trail and…I kept reading, sighing in relief. While I don’t mean to minimize the significance of burn-out, the dramatic shift in abilities got a new explanation in Blazing My Trail. They were due, to a great degree, to a medication she took that made things worse instead of better.

The relief was palpable. I know with certainty never to take that drug. Besides, I’m horrible about taking daily medications. And I try medication only as a last resort—or after significant experience that it will be necessary, such as with bronchitis and antibiotics. And, well, the only time I found a psychological medication (for example, an anti-depressant) that didn’t provide more side-effects than positive effects was when I had that terrible reaction to a birth control shot that lead to a serious case of post-partum depression. The drugs then were just a temporary fix to get me by until the birth control hormones were out of my system and it was only effective because my depression was more poignantly chemical than usual and far stronger than I usually experience.

So, avoid drugs—check.

But, that’s not enough. She also described a plan that helped her regain abilities she’d feared she’d lost forever. It was simply a matter of taking care of herself and being responsive to her distinct needs.

Now, that’s not as easy or as obvious as it sounds. Not for me. I’d always thought that I should be my lowest priority, after family, God, work, school, friends, etc. I knew I had to sharpen the saw and all that…but that didn’t make it a priority, did it? Not really. Certainly not.

This scared me into reevaluating and reassessing the importance of my own well-being. Because, yes, actually, I am a priority. As a caretaker, I need to take care of myself so I can continue to take care of others. It seems obvious. In fact, I knew it, on an intellectual level. Reading Rachel’s story has made it visceral.

So, take better care of myself—check.

I can’t stop pushing myself. There’s too much to do. But I don’t have to push myself so hard that I break. I don’t have to ignore my own needs and well-being. In fact, if I pay attention, I’ll be able to do more, because I won’t get quite so tired.

But, wow, was it a scary, rocky trip—and I didn’t even have to live through it!

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Imminent Burn-Out? (Part 3—My Panicky Aftermath)

  • Posted on November 18, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning capabilities, which she lost, and how she attributed that loss to burn-out.

I admit, when I first read that, I panicked for a good, long while. I wrote a lengthy post in near-hysterics about what Rachel said and what I feared. The post was highly emotional, a bit incoherent, and I asked my husband for his opinion before posting it. He agreed that I shouldn’t post it at this sensitive juncture (a reference you will either understand or not).

You see, it’s not that I’m afraid of being disabled. I’m not afraid of losing the ability to do things that I can do now. For me, unless I die very young, that’s inevitable. I’m a writer and I’m already showing signs of arthritis. I’m 32 years old. I use my hands and brain, almost exclusively to any other part of my body, for hours at a time several times a day, every day. So, unless I die young or arthritis is cured, I will lose the ability to work as I do now. I’ve looked ahead to that future, acknowledged that it will slow me down, and committed myself to not letting it stop me. If I lose enough functioning to be diagnosed on the autism spectrum, I can do the same. It’s not me I’m worried about.

There is a powerful, local government agency that has the authority—with few checks and balances—to remove children from the home of their parents. Here it is called Child Protective Services. For most of my teenage and adult life (the parts of my life that I was at all cognizant of their work), I was fully on-board with their mission. I’ve seen abuse. I know what it does to kids. I’ve seen kids have their lives ruined by abusive parents. I’ve seen some kids reclaim their lives, either as children or as adults. I’ve seen some people who struggle with reclaiming their lives every day of their lives. And I’ve seen some people who either don’t know reclamation is possible or have given up or continue to live in abusive situations their entire lives. I’ve seen it. I know. So, how could CPS be a bad thing?

For the same reason that autism advocacy is necessary at all. I was told: “No family should be burdened with three children with autism.” I was told: “The goal of therapy is to help your children become indistinguishable from their peers.” The person who said these words had tremendous influence with the local CPS agency, and when we didn’t comply with her “suggestions” to prioritize normalization or clinicalize our home, she called CPS—repeatedly. And they sided with her—completely. If they could, they would have removed the boys and put them in group homes for children with disabilities where they would live until they were normalized enough to be put into foster care. This was explained rather explicitly. Luckily, they couldn’t fabricate a case strong enough to make that happen.

But what if I burned-out? What if I became sufficiently disabled to qualify for an autism diagnosis? It would all start up again. The person in question would, if she became aware of it, begin harassing my family all over again. And I don’t think the autism advocacy movements have made enough progress for my family to survive the encounter.

So, I panicked.

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Imminent Burn-Out? (Part 2—Rachel’s Experience)

  • Posted on November 16, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and I thought I knew what that meant. Then, I read Rachel's book The Uncharted Path.

As the full title, The Uncharted Path: My Journey with Late-Diagnosed Autism, implies, Rachel was not diagnosed as a child. Rachel lived for 50 years with no explanation for the ways she experienced life. Essentially, Rachel passed, or strived to pass, as neurotypical—for 50 years. She coped, she lived a successful life, she had relationships, she had a child, and she had a career—for 50 years.

Then, she started researching autism in regards to her father, and that sense of similitude that maybe it applied to her as well crept in. This search for answers culminated with an official diagnosis:

After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense. (UP, page xiv)

Sure, she struggled. Sure, it was work. But she coped. Self-doubts (I am oh-so familiar with those) aside, she coped for fifty years!

I used to be able to do so much. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work full-time at a demanding job, teach my daughter, support my family, pay the bills, cook the meals, clean the house, plan birthday parties, include all the neighborhood children in our holiday celebrations, exercise, and do just about anything anyone asked me to do, except stand on my head. (UP, page 98)

And then, she burned-out. She stopped coping. She lost functioning.

Those times are over. I’m sad that they’re over, and I’m also very relieved. I’m finally learning that I am not an infinitely renewable resource. Walking through the world and taking care of myself is a lot of work. I have to use my energy wisely. As I experience the effects of a lifetime spent defying the way I was made, taking care of myself is the most vitally important work I can do. (UP, page 99)

Rachel describes the differences between what she used to do and what she could do as she wrote her book in vivid detail. I felt a familiar similitude to her experiences growing up and becoming an adult—working hard to be a success, but always being a bit different, standing out in a way that’s not conducive to social success. I felt a similitude to that woman who pushed herself so hard and did so much for others—career, family, friends. I understand, because I do it. I’m living that life right now. And I get tired. I run out of spoons.

And that’s where the fear comes in. Rachel’s words, “not an infinitely renewable resource,” were something of a blow—a terrible, fear-filled blow to my sense of reality.

What if we have a lifetime allotment of spoons? How many have I burned through? How many do I have left? Am I going to crash and burn?

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Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.

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Derailed: Pulling Up the Tracks

  • Posted on October 30, 2011 at 2:55 AM

One trait that seems common to autistic individuals is a need for order, for predictability, for sense to be made in this chaotic and unpredictable world—it’s often marked as a deficit. But I’m not sure this is so different from typically developing people. I’ve known more than a few control-freaks who have no other marked traits associated with autism. The difference is how they cope with their need for order and predictability. They apply a patina of control over the world by being rigid and driven, filling their lives with minutiae, and bullying others to conform to their ways of doing things. Their will is a formidable force to be sure, but I can’t really see that sort of behavior as a positive. They don’t look particularly odd, but they attain their semblance of control at the cost of others. Whereas, meltdowns aside, most of the autistic coping mechanisms are less destructive to others’, but limit the abilities of the autists.

For me, order isn’t necessarily a matter of constructing a daily routine. I’ve never found a good way to bring order to my day in the sense that I know what I’ll be doing and when. If nothing else, the irregularity of my sleep cycle interferes with that in problematic fashion—something to work on, definitely. I prefer order to start on a more macro level. I need to have goals for my life, and I set those goals at least five years out. Then I need to break those goals down to what I want to achieve in a given year, a given month, a given week.

The problems I encounter are two-fold. First, I set the wrong goals. Second, life intrudes on my sense of order. In the last two years life has intruded a great deal. Very few of my plans have worked out. Many of those goals were just the wrong goals or the right goals at the wrong times. My goals also lacked a necessary balance—I lacked goals that would improve or maintain my own health and well-being, like getting sufficient sleep on a predictable basis. The rest of it was the natural chaos that results from this messiness we call life. And, of course, I wanted to more than I was able to in the time provided.

Recently, this has all come to something of a head. My train, rumbling ahead at high-speeds, derailed. The aftermath was devastating. It wasn’t just a single point coming on done; it was the accumulation of my chaotic life paired with major and minor goals coming unraveled, seemingly one on top of the other before I could cope with the first. The cars piled up. The result was an inner life more mangled than manageable and an outer life that hasn’t been working for far longer than I’ve been willing to acknowledge.

Sifting through the wreckage has taken some time. Making sense out of the pieces, identifying where I went wrong, and discovering ways to fix it have also taken time. The process isn’t complete, either. But I’m laying new track—setting a new course—and picking out new cars to put on the train that is my life.

Order doesn’t come naturally in this chaotic world. We have to make it where we can, how we can, though often it’s merely illusion. Sometimes I forget that last part.

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Creative Flip-Flopping: A Thought on My Neurodiverse Brain

  • Posted on October 26, 2011 at 3:04 AM

I was sitting in my journalism class, trying to find a way to sit that would allow me to concentrate better by making me less conscious of my body when my professor said something that struck a chord. It wasn’t a chord of similitude, but a chord of difference. The lecture was on overcoming writer’s block. I’m not saying I’ve never had writer’s block, but I’ve read few descriptions of the phenomenon that really matched up with my own experiences. My professor’s rendition was no different in that regard—it didn’t fit with my own experience.

This is by no means meant as a comment on my professor’s teaching. Aside from the obvious bias towards neurotypical processing and skills, he’s a great teacher. He really cares, he’s interested in learning our interests and helping us to develop them, and he’s got some great insights to share. In a way, even his neurotypical bias is intriguing. I love reading about how different people think. How else—unless someone describes their own thinking—am I supposed to learn what really goes on in people’s heads or how their brains work?

Sure, yeah, I’ve done Cognitive Empathy 101, but, frankly, I think the theory is baloney. People assume they understand what’s going on in each other’s heads, but there is a lot more variance than such assumptions account for. Some of the more obvious things, like whether someone is sad or troubled, provide insights into someone’s emotional state. But you don’t really know what’s going on in their heads, nor do you really understand how their brains work. Just look at all the fiction, nonfiction, poetry, and various other art forms that try to express and/or explore the differences between male and female brains. Throw in autism, bipolar disorder, ADHD, child abuse, depression, addiction, personality types, sexual orientations, cultural differences, racial differences, intelligence differences, and just about anything else you can think of—and, guess what, you’ve got a lot of different brains working in a lot of different ways. Sure, some of those ways overlap and some differences are greater than others, but the thing about cognitive empathy is that it is based on an assumption of similitude that is, more so or less so, inaccurate.

Back to the classroom. Back to my professor’s description of the work he does (and has generalized to others) to flip between the right brain and the left brain in order to produce creative works. Hm. He described in considerable detail his process of pushing through left-brained (or conscious) writing to right-brained (or unconscious) writing. Hm? I mean, really? That’s work? It takes effort? Really? Apparently it does.

My brain doesn’t work that way. I flip-flop between right- and left-brained thinking/writing almost at will. Sometimes—rarely—I’ll need a jolt. And by “jolt” I mean a few minutes to stand up and pace to unwind the right-brained rant going on in my head so I can get back to the more critical, more responsible left-brained point I was trying to make. The switch, for the most part, is fluid. I can do it at will. It’s not work. But that’s just me. Well, I’m sure there are others, but I don’t assume everyone’s brain can or should be so fluid. But, I also didn’t know how much work, and how much crap, some people have to go through to make the switch.

I have no idea whether this quirk of my brain indicates that I’m closer to the autism spectrum, or if it indicates something else entirely. The point is that individual brains work differently. Each person is different. My brain is not some standard model issued out of some cognitive-empathy-friendly box. Few people I’ve talked with understand the seething layers of discourse and distraction going on in my head and only my head almost constantly. Few people understand why writing is so much easier than talking for me: because writing forces my brain to work consciously on one and only one level at a time, while talking does not.

In fact, when I described this internal noise to someone who had a limited knowledge of psychology (Psych 101, without independent and supplemental study), they told me it sounded like I was schizophrenic, except they just used the word “crazy.” Of course, due diligence being what is and knowing enough about schizophrenia to know that it’s not something I want to experience without professional help, I told my psychologist exactly what I told that individual. She laughed (in a friendly way, not as if she were laughing at me—and yes, I can tell the difference). No, I’m not schizophrenic and no I’m not delusional. I just think too much.

Yeah, well, I knew that.

So, back to the whole brains thing—differences make for different brains, different thought patterns, different thought styles, different coping mechanisms and different internal realities. I greatly admire and appreciate Rachel’s efforts to tackle the myth that equates autism with a failure to empathize, but I’ve really, really got to wonder about the people making these claims and their ability to empathize. While Rachel is making the distinction (and it’s an important one) between cognitive empathy and emotional empathy, I really have to wonder if the first step to true cognitive empathy isn’t the ability to recognize that other’s people’s brains may not (probably don’t) work like yours does. What “gets” other people—what makes them laugh, or cry, or smile, or dance, or whatever emotional response you want to insert here—isn’t necessarily going to be what makes you do the same.

We’re different. It’s not a bad thing. It really, really isn’t. If we were all the same, we wouldn’t need fiction or nonfiction narratives. If we were all the same, we wouldn’t need art or poetry or memoirs. If we were all the same, we’d bore the life out of each other—social contact would suck us dry and leave behind lifeless, boring husks of numbness. We wouldn’t need to reach out, because the only people to reach out to would be others who were just like ourselves. I shudder to think of it. Different is good. Different is right. We’re different for a reason, more so or less so, but all different. And I’m glad for those differences.

Now if we could all just figure out that communication—not some magical, inaccurate “knowing”—is how we connect.

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Independence: Part 1

  • Posted on July 9, 2011 at 6:21 PM

This past week we celebrated the United States’ independence from Britain. All across the country people celebrated with parades, fireworks, parties and barbeques. My family spent some time with extended family at my in-laws’ cottage. But as we celebrated our independence, I couldn’t help but think about what independence means to my family and the many people like us throughout this country. One thing is for sure, we weren’t the ones setting off fireworks, though there were plenty of them going off around our neighborhood. Just listening to these relatively distant loud bangs and pops or seeing the flashing colors was enough to aggravate my own senses. I can only imagine how much these stimulations irritated my children; though I know Alex and Ben found it difficult to sleep while all of that was going on.

My reflections on the meaning of independence were a bit more basic. What is independence? Why is it so important to people in this country? What will independence look like for my family as my children grow up? What will it look like for each of my children once they become adults? I tried to find a way to fit this all into one post. Obviously, I failed. So, consider these topics on your own and in the next few posts I’ll relate my thoughts on each of these topics and try to pull it all together into some kind of conclusion.

I know that’s not very reassuring, but try to stick with me. It should be an interesting ride!

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Interesting

  • Posted on March 11, 2011 at 6:44 AM

Willy came home with a single piece of homework.  He had to pick three diseases to research and I needed to sign the paper on which we wrote his choices.  When I first looked over the list of diseases, which were in alphabetical order, I had to pause.  Interesting: the word resounded in my head with a not-so-subtle tone of disapproval.  Towards the end of the A’s was one word I knew was not a disease.  You guessed it.  Autism was listed as one of the diseases Willy can research.  Interesting.

On the one hand, when I told Willy that it would be good for him to research autism, considering he and his brothers have autism, he was somewhat surprised.  I know I’ve told him about autism.  I know we’ve discussed it.  But it’s not something we make a point of bringing up over and over to the boys.  He’d forgotten he and his brothers have autism.  So, researching it will probably be good for him (especially if I’m helping to direct his research).

On the other hand, autism is NOT a disease.  The teacher should know this.  Autism should NOT be listed as a disease.  If the sheet was labeled “diseases and disorders,” then I would have no problem with it.  But it’s not.  It’s a list of diseases that include AIDS, cancer, diabetes, and autism—among others, some of which I know are not diseases (like ADHD) and some of which I suspect are not diseases (like Cerebral Palsy).  I consider this misinformation on the part of the teacher/school district.

Of course, those two hands can clasp together:  Willy can do his work in such a way that misinformation is corrected, which can better inform his peers and (if necessary) his teacher.  This is good, but it bothers me that it should be necessary.  Misinformation in schools is problematic for obvious reasons, but misinformation is problematic in general and Willy’s probably going to have to correct a lot of it as he makes his way in this world.  Autism as a disease as part of my autistic son’s school work: Interesting.

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