4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Thursday, January 26, 2012

Misc. dump

Ramblings of an Aspie mom! This junk has been rattling around in my head for a few days or a week, and I need to dump it before I can wrap up and POST my "holy grail of DX" post that I've been promising and promising.

(1) Tell tell or not to tell? That is the question.
So, you'll remember that I was confronted with the question of whether telling 4A about her autism was the right (which means best for our family) thing to do. Lots of families living with autism struggle with the same question, and you can research what experts have to say on the issue. Most experts, in fact, I *think* probably all, experts are in favor of telling, of course.

I can tell you how we decided to tell and how we did it, but I remind you again that this is our life, our family, our journey. This might not be what works for your life, your family, your journey.

We don't think there's anything "wrong" with 4A. Instead, we believe that 4A's brain is wired the way that it's wired. While that doesn't matter or amount to anything, it does make it very difficult for her to spontaneously preform socially-necessary or -desired tasks, like following directions at school or at home, having empathy, and a host of other social tasks. Because she has to live in this neurotypical world, we'd like her to be able to navigate it. She doesn't have to like it, prefer it, or want it, but she does have to know how to navigate it so that she can survive. We hope that some day, the neurotypical world will expand to understand the different wirings of brains that exist in nature, but until then, 4A needs support to learn to navigate the neurotypical world and function within it. She will, after all, need to have a job some day to support herself, and jobs are all about rules and following them. Jobs provide income which pays for housing, food, and basic necessities. Perhaps, though, she won't have a paying job; maybe she'll be a nun or a missionary or a millionaire. Who knows? But, for now, we operate under the assumption that she'll need to provide for herself if/when we aren't around. It would be wonderful if she found happiness in her life, in whatever form she defines that, but that's a collateral issue.

As such, we are not ashamed or embarassed of 4A or her wiring. We aren't responsible for it, but we are blessed by it. It is a wonderfully rare and indescrible privilege to learn that things are not "normal" and to discover what truly matters in life.

Because we are not ashamed of 4A's wiring and know that we are not responsible for it, we chose to tell her about her autism, from a very, very early stage in her journey. After all, she was present for all of those assessments and doctors' appointments and therapies. She knew what was going on. She saw that her siblings didn't do those things or go to those places. We decided to tell her about her autism so that we could define its terms and meaning for her, rather than society doing that for her. For us, autism is wonderfully amazing and interesting and good. She asked me one time whether having autism is a "good" thing or a "bad" thing. How do you answer such a question? I told her that I think it's a WONDERFUL thing because it makes her her, and I love her.

Such was the driving force behind our decision to tell. There was no one lightening bolt moment of how or when we told her. I do remember talking with some scrapbooking buddies about how to tell her when I stumbled across pictures from a terribly dark time in our lives together. Should I write her a note to tell her about it? I decided just to scrapbook those pictures factually. It was all part of the journey, all part of her story.

So, our discussion with her about her autism has been ever-present and always on-going/in progress. It is, after all, who she is. For us, because we are neurotypical, it explains parts of her and how she thinks and why she does and who she is. For her, of course, it does no such thing; she needs no explanation because she lives and feels and breathes it. Unfortunately, the world perceives her as "different." It has been our hope and task and joy to show her how wonderfully normal her autism is. To explain to her how the neurotypical world works and to support her in learning how to navigate or mimic or master it. Not that she needs to for her, of course. She's perfect the way she is. But, if she is to function in this world in a way that allows her to access the most basic parts of it, she needs to know how to handle it.

In that way, it's really no different from preparing a neurotypical child for life. Here's how you wash laundry. Here's how you show kindness. Here's how you do subtraction. Here's how you handle finances. The list is just a little longer for her, that's all. And, a lot of the things we don't have to explain or teach to our neurotypical children require explanation or support for her. Same-same but different.

Does this mean that all families who live with autism need to tell? I, thankfully, have no way of answering that question. It's happily outside of my jurisdiction. I can (and did, I hope), however, explain what we did and decided and chose around here, in our happy version of autism.

I think my confrontation with the question about telling her last week was more sadness of what she's going to have to go through being "different" in a neurotypical world. I know in my heart that we did right by telling her; how could we not? But, I know that she's going to have a harder road to hoe because of it. There's nothing to be done about that, of course, except to help her weather it.

And, I think this is a horribly obnoxious or privileged discussion to have with myself. If she had Downs or drawfism or Fragile X, she'd look different in addition to having different wiring or genes. I wouldn't have the choice about whether or not to tell her. She'd know by looking at herself and by how people looked at her. Only because her autism is neurological and, thus, invisible does this conversation with myself even occur. Shame on me.

(2) Why behavioral support/intervention?
Egads! This is such a hot-button for folks, both living on the spectrum and off. I am somewhat confused by it, but I will do my best to explain it.

I am constantly introduced to or made aware of or asked about or by other parents who suspect that their child has autism the hows and whys of what to do. Hence, the blog, to reduce the workload. Sometimes, I also get similar questions from parents of kids who aren't suspected of having autism but have other behavioral challenges or suspected diagnoses.

I'll tell you like I tell them, that I don't know. I don't. I'm not a doctor. I'm not a behavioralist. I can direct you to some resources and tell you what we did, but those things aren't really relevant for you. Informative? Yes. Illustrative? Yes. Productive? Probably not. Mimic-able? I doubt it.

So, your kid is out of control. You know it. Ladies in the grocery store express it with their demeaning glances. People comment on it. Family tells you it. Whatever should you do? DEAL WITH IT! That's always my answer. Like I tell my children EVERY day, shit goes wrong all the time. That's what life is all about. Instead of trying to figure out how to avoid it, why not try, instead, to figure out what to DO about it. That makes life a LOT easier.

Off the soapbox.

People know that their kid is struggling. But, for some reason, they can't bring themselves to seek behavioral input. I *think* this is because they think they know what they're doing or can't bring themselves to hear that they might be doing something wrong.

Again, color me confused. Assume your child is showing signs of cancer: pain, loss of weight, constant illness, whatever. You've done probiotics and antibiotics and vitamin C. You've tried protein shakes. You've given Tylenol. Nothing is working: nothing you've read about, heard about, or tried in desperation. So, you haul that kid's ass straight to the doctor. When the doctor suggests a specialist who does chemo, which you KNOW will SUCK, you're getting your kid there, fast. You don't care that that specialist is going to tell you that what you were trying wasn't working. You don't care that she's going to recommend something else. You don't care that you may look like an idiot. You want to SAVE your baby. Right?

It's honestly, HONESTLY, the exact same thing. That kid of yours needs saving. Saving from being an out-of-control pain-in-the-ass that no teacher can stand or child will befriend.

I know that people don't get this. Know why? At times, when I've explained 4A's behavioral treatment, they'll say, "Oh! Well, I'm definitely already the mean mommy." Okay. Right. Because I haven't slapped her or spanked her or been consistent or meant what I said or set boundaries. Because I haven't been mean or tough or a hard-ass. (If you knew me in real life, I think you'd be laughing your ass off right about now.)

Here's the secret....ready?....I did ALL (and I mean all plus a few extra) of those things that you did--I was mean--I was consistent--I was a hard-ass--I spanked her--I put her in time-out--I didn't let her get away with shit--I insisted that she attempt to do age-appropriate tasks by herself--I didn't give in when she put up a fight, and.......ready?.....really ready?....because this is so obvious that I think folks miss it....they. didn't. work. They didn't work. Honestly. The same shit that all the rest of you have tried, that I also did because I am no idiot, did not work on this kid.

Now, the amazing Dr. Steve, fantastic behavioral psychologist that he is, gave me some new, better, more helpful tricks that aren't necessary with neurotypical children but that did work on my child with autism. Stuff you can't read about in parenting books because it isn't there. Stuff you haven't tried because you don't need it. Stuff that, thankfully, isn't mean or spanking or yelling but stuff that actually works. Stuff that replicates or mimics or artificially replaces the social wiring that your typical kid has. Mine doesn't, so we've got to make a fake version of that. (You can insert here, if you like, the impulse control that your kid is lacking, the self-control that your kid is lacking, whatever the deficiet may be, cross out social and write your ailment of choice in there.)

Behavioral treatment is a two-headed beast. On the one side, it's super duper easy. Easy, I think, in that it fixes the problem, and you learn to know how to be intuitive about it for your child who doesn't respond to the typical stuff that every one else is trying. On the other side, it is the most gut-wrenchingly difficult, exhausting, hard work you'll ever do in your life. You are going to be asked to do things that seem counter-intuitive, abnormal, unsafe, unloving. It really, really will be worth it, I promise. The lack of control or lack of impulse control or lack of social prowess or constant crying or constant tantrumming or whatever it is that you're experiencing now really will go away. You are going to have to work your ass off. It might take a LONG time. You may eventually need medicine to help it along. But, it is going to work. And, here's another secret, and this one is a good one. You didn't cause that lack of control or constant crying or constant impulsivity. You didn't. You may have inadvertantly reinforced it, even though you were a "good" or appropriately "mean" parent, but you didn't cause it. And, even if you did, you're about to get a chance to fix what you fucked up.

A good behavioralist will tell you that there is not a behavior that can not be changed. Not one. Regardless of from which it stems. Which, here's the super cool part!, means that you do NOT need to know from where the behavior comes. That kid's impulsive and out of control. Is it autism? Is it ADHD? Is it ineffective behavioral management (this does NOT mean bad parenting; it DOES mean that the behavioral measures you are using are either inadvertantly reinforcing or ineffectively curbing the behavior at issue)? Who knows?!? Who cares?!?! Diagnosis is not necessary. Behavior can be treated without it.

If I had one wish (okay, actually, it'd be one of a couple of wishes), I'd wish that people would get this. Not for me. I really could give two shits what they think of me or my parenting because that isn't relevant. But, for their babies' sakes, I wish they could get this. Life is so much easier for baby and parent when things are not out of control. If it's out of control and you've tried it all, including being appropriate "mean" or "firm," why on earth would you hesitate? The only thing you have to lose is control, and it seems to me that you've lost that already.

Tuesday, January 24, 2012

Day-to-day Aspie-isms

A bit of levity today. Enjoy!

I get asked all the time about what it's like to live with Asperger's. Some illustrations.

Illustration #1, literal thinking
4A loves to draw, as I think I've mentioned before. It's her "thing." All Aspies have a "thing" (you've probably heard about the stereotypical boy Aspie specialized interest in transportation). Since 1st grade, we have had to use immediate and long-term reinforcers to curb 4A's desire to doodle in class, either on herself, her notebooks, her desk, whatever.

For 3 YEARS, we have worked on this, mostly with a good deal of success.

So, imagine my surprise last week when she walked in the door from school having gotten a ticket for doodling in class. Me: "What happened? You know the rule about doodling in school."
(I interject for one minute to remind you that we have had the following conversation: Me, "Why did you doodle?" Her, "I was bored." Me, "What's the rule about doodling?" Her, "It's not allowed." Me, "What's the rule about doodling when you aren't bored?" Her, "I can't." Me, "What's the rule about doodling when you are bored?" Her, "I can't"--this is WELL covered territory, friends.)
Back to the most recent issue. I ask what happened, she said, "The magazine said to make doodle school." Me, "What?" Her, she doesn't say a word. She marches right over to her backpack and pulls out an American Girl Magazine that she checked out of the school library. She flips it open to this page.
Me: "Great. How did that idea work for you?" Her, "Pretty good for awhile but then I got busted." Me, "So, what have you learned from this?" Her (in her deadpan, monotone, Aspie best voice), "Never to listen to an idea in a dumb magazine."

And, there you have it. Dr. Steve's response, "I love it!!!! She is such a poster child for Asperger's at times!"

Illustration #2, concrete thinking
As I mentioned the other day, a 4A off of supports at school looks like a shitty student, looks like someone who either doesn't know the information or isn't following directions. In reality, she has memorized every single solitary thing they've told her AND she lacks the neurological typicality to make inferential or abstract thoughts. If there is a yes or no answer to what you want to know, she'll nail it. If you want more than yes or no, you're going to have to tell her specifically what you want from her or you're going to just get yes or no. A case in point. (And, the teacher who gave her this test DOES use supports, but she had to chuckle after giving her this when she realized how literal 4A really is...she needs the support every single time because inferential thinking is not something she does spontaneously or organically; she can, however, mimic it with the right supports).

A recent reading test. Please notice, as you scroll through that she got every single multiple choice question right. No inferential thinking required here, so of course she did! Please notice which answers she got wrong: those that required inferential thinking or explanation without a specific prompt.

Bam! In question 10, she was asked to INFER what was most likely to happen next. She's off in left field, of course. Teacher tries to help her out by telling her to look back at the pictures. Minna was falling asleep in the picture. If she was falling asleep, how on earth would it be likely that she'd wake up and play the piano?!? Now, if this question had said, "Look at the picture on page X. Even though the story doesn't say what happened, look at the picture to see which of these makes sense as a next step in the story," she would've had a better shot at it.
This is fantastic! She was only asked to state what she knows. Now, we all know (NT as we are) what the teacher meant here. She meant that we were to extrapolate from the story what we learned based on what happened in the story, e.g., what was the moral lesson at play here? Two problems here for 4A. (1) Morals are SOCIAL constructs. A NT can read a story and know right away the moral point of the story. For example, in "The Boy Who Cried Wolf," all NT readers will realize that it's not a good idea to cry for help unless you're really in trouble. An Aspie probably won't realize that right off without some good scaffolding because it's addressing a SOCIAL issue. (2) The teacher didn't ask for what she wanted. Inferentially, most NT kids knew she wanted to know about the moral of the story, but she didn't say that. Literal creature that 4A is, she didn't know that because the test didn't say that. So, a simple rewrite of the question here, like "what is the lesson you learned from the story," might have helped, but again, we're talking about a social issue at play in the story. Chances are, because of neurological social impairment, 4A missed it.

Illustration #3, literal thinking
This is a great one. A couple of years old, but a fantastic illustration that, for an Aspie, words have meaning.

Read these questions carefully.

When this came home in 1st grade and I asked Dr. Steve about it, he said what I had immediately thought. "Well, she's right. That is the point of reading an article. And, if the teacher wanted her to restate the question or use the graph, she could've said so, and 4A would've been able to answer it."

If you want her to answer something, you better be careful how you write it. Had question 1 said "What would someone learn about the grey wolf population in the U.S. after reading this article," 4A would've had a better shot at it. And, if she had been told to restate the question, she might have. And, if you want her to explain her answer with the graph, you better tell her that or you're just gonna get yes or no.

Now, I appreciate that most of the children figured this out on their own, largely because they reviewed this as a class several times. Most of those children are NT and don't have autism. 4A does. She knows the information, but if you want it in a specific format, you're going to have to be exactingly clear about how you want it. Dr. Steve describes it like this: "She knows the teacher knows the answer and that the teacher knows that she knows the answer. So, for her, what's the point of this redundancy?"

Grades are not something that are important in this house. Grades are not a reflection of who we are as people, how hard we try, or how smart we are. What matters in this house is how hard you tried and how well you listened. Did you listen to the direction, and do your best to follow it? That's the litmus test here. So, the grades on these tests are irrelevant. BUT, what happens when tests like these come home is that the teacher becomes frustrated with 4A. The teacher has explained it (or not), and it was clear to everyone else. So, 4A looks like a pain in the ass or a reluctant worker or a minimalist or oppositional. The issue really isn't 4A and her skills but rather the way in which information is presented. She actually does know what they want her to know. If she is asked about the information in a way that supports her neurological deficits, she is compliant and accurate and a "good" student and "smart." Left to her own devices without supports, she appears the opposite.

It can feel like a CONSTANT work against the grain, but she'll get it. She'll eventually learn to mimic what it is that they want her to do, but can you imagine how frustrating and exhausting that is for her?

Sunday, January 22, 2012

DSM-5 debate

You might have seen, read, or heard something about the recent debate underway in the autism community about some proposed new criteria for diagnosing autism. Most notably for this family, these proposed changes would possibly eradicate Aspies' existence from the autism spectrum.

I am going to rough in the basics before sharing my open letter to the American Psychiatric Association (APA) with you. Please know, however, that this is a very rough sketch of the basics and background. If you simply Google "DSM-5 debate autism," you can find a lot more (read better) info.

In a nutshell, the APA publishes the criterion used for diagnosing, among other things, autism in its Diagnostic and Statistical Manual of Mental Disorders (DSM). These criteria, then, become the working definition of "autism." The DSM has undergone various editions in its tenure, and autism wasn't actually even added into the DSM until 1980 (even though it surfaced in scientific literature in the 1940s). Asperger's Syndrome wasn't added as a separate diagnosis or category on the autism spectrum until the DSM-IV in 1994.

Boiled down to the simplest and shortest explanation, the proposed DSM-5 does not have a separate code or category for Asperger's Syndrome. The proposed changes in the DSM-5 purport to include the entire spectrum in a single more concise code under the rationale that ASDs share a common set of behaviors. While Asperger's Syndrome is mentioned specifically in the APA's rationale or notes about the changes, it is not listed anywhere in the DSM-5 itself. It's as if Asperger's has been eradicated from the face of the DSM-5 and the spectrum (so, too, has PDD-NOS).

In another nutshell, the APA rationalizes that these changes are necessary to produce greater reliability in ASD diagnosing. The APA purports that greater reliability is needed because there's been too much variability across sites (read people who are doing the diagnosing) and over time (read the autism epidemic that has been so repeatedly reported in the past several years). The APA further rationalizes that these variations or inconsistencies were driven by too much of a focus on "severity (of symptoms), language level or intelligence rather than features of the disorder."

What we have now then are some proposed changes that would wipe out a disorder or two from the medical diagnosing rubric used by docs, an acknowledgement by the APA of too much variability in diagnosing, and a qualified/calm concern by families who live with high-functioning autism. These folks, us included, want to know what the hell happened. Some even want to know what this means for their kids and their kids' services and futures IF these proposed changes go into effect.

As an aside, I am clear about our Aspie's future and services. She has autism. A gold-standard diagnostic assessment at a leading autism facility has made that plain. She is doing well, which means that she is largely able to conform to or meet the educational and social expectations in her life, because she has received for six plus years and continues to receive multidisciplinary, consistent, and continuous support at home and at school. At home, nothing changes with this new DSM-5 IF it goes into effect. At school, we believe nothing will change.

How can we believe that, you ask? The folks at 4A's school are super clear about who she is and what she needs to succeed. That's not going to change with the DSM-5. What happens if we move or when she moves to middle school, you ask? Will her dx remain intact? 4A actually has two diagnoses. The first is a medical diagnosis of Asperger's Syndrome that was established by the aforementioned gold-standard assessment. We don't believe that the DSM-5 changes 4A's medical diagnosis because it was made at a time when the DSM-IV was in effect. Even if a new assessment became necessary under the DSM-5, we believe 4A would still receive a medical DX of autism because the symptoms she displayed in her very early years would meet the DSM-5 criterion.

4A's second diagnosis is an educational diagnosis of autism. That educational diagnosis is based on the medical one, but they are separate and distinct. The DSM-5 doesn't (theoretically) touch that educational one. (This is an issue that deserves a lot more stringent treatment on this blog, and it'll be in an upcoming "holy grail of DX" post, I promise!) In fact, an educational diagnosis is really, IEP-wise, the true basis for educational services. A medical one is somewhat like gravy for IEP purposes.

Most most most importantly, we have documented volumes of PROOF about what works for 4A. The diagnosis isn't what treats the autism (this, again, is something that I plan to tackle in my upcoming "holy grail of DX" post). The supports and interventions are what treats the autism. Call it what you like, Asperger's, autism, whatever, certain supports work for 4A, and we have proof of their efficacy. Interestingly, as we learned earlier this year in reading, even having an IEP that lists and mandates these supports doesn't mean that a teacher is going to use them. I'm of the opinion that ain't no crazy teacher in her right mind wants to try handling 4A without them. If someone were crazy enough to try, I figure she'd last a week or two TOPS before she threw in the towel and came crawling back to the huge 4A rule book we've created over the last six plus years.

And, here's the worst case scenario (and, again, I know it first-hand because we lived it in reading this year before the big switch). Suppose we loose our IEP after the DSM-5; it's not likely, but do the hypothetical with me (good law school student that I used to be). IEP gone equals no basis to demand accurate supports (those ones on which we have volumes of proof). When 4A doesn't have her supports, as she didn't in reading earlier this year, she gets shitty grades and she displays passively disruptive and oppositional behaviors at school. She's described as minimalistic, limited in her thinking, reluctant, whiny, oppositional, etc. So they think she's a pain in the ass. Oh well. We can either live with that and all of the aggravation it causes at school and at home, OR we can pull her and homeschool her. I ain't afraid to do it, no matter what the passerby says about home schooled kids being screwed up (which I, for the record, disbelieve). I can't possibly produce as shitty of an outcome educating her myself as a real educator teaching her without her supports could produce.

So, it'd suck, of course, but it's not likely, and we could survive it. Remember, "at first I was afraid, I was petrified," right? Ms. Gaynor was right. We will survive!

(These latter issues of what happens to the services of a DSM-IV diagnosed child IF the DSM-5 goes into effect are nicely addressed and quieted, I think, in a recent open online forum presented by Autism Speaks. It's a must read for families who live on the spectrum.)

So rough sketch and nutshell of what's going on established, here is my family's letter to the APA about these proposed changes.

To: The Neurodevelopmental Disorder work group of the DSM-V Development Committee
From: Our family

Our family lives with autism. Specifically, our eldest child (currently age 8.5) was diagnosed with Asperger's Syndrome in 2008. We have three younger neurotypical children, as well.

4A underwent medical diagnostic testing for autism at (unnamed medical institution), a leading autism diagnostic, therapeutic, and research facility.

When at 14 months of age, 4A first presented with symptoms of what we now know is an ASD, we, like you, were very concerned with getting a reliable and accurate diagnosis. For our family, that answer needed to come from the most credible place so that it was reliable for us and 4A's eventual educators. Because autism experts consider the neuropsychological profile to be the gold-standard for diagnosing autism (blog readers: I will address this in the "holy grail of DX" post), we pursued this at (unnamed), a leading autism facility.

Even after three plus years of intensive intervention (behavioral and pharmacological), which worked together to reduce the severity, intensity, and frequency of 4A's symptoms, the neuropsychological profile still confirmed a diagnosis of Asperger's Syndrome as defined in the DSM-IV. (CARS also confirmed whereas ADOS was inconclusive; blog readers, this, too, will be addressed in the "holy grail of DX" post).

4A is currently functioning well at home and at school because she has received continuous, consistent, and well-rounded multidisciplinary support for the past 6+ years. Our family will continue these supports whether or not Asperger's Syndrome is recognized by the DSM because we know first-hand that these supports are effective in keeping 4A present in her own life.

While we share your concern with inconsistent and variable diagnoses over time and across sites, we respectfully believe that these issues could and should be addressed without eradicating Asperger's Syndrome from the DSM.

As you know, "Aspies" feel a social disconnect with the world around them due to the neurological impairment with which they were born. We respectfully submit that erasing their existence from the DSM will further impair their ability to connect socially with those around them. So many adult and adolescent Aspies and Aspie families report that diagnosis gives them a sense of community. This community will be impaired if the proposed changes in the DSM-5 take effect.

More importantly (and, yes, I mean more important than that, which is remarkable, I think, because Aspies feeling a sense of community is HUGE given their social neurological impairment), inconsistency of diagnosis across sites can be handled in a more effective manner. If neuropsychological testing, the gold-standard for diagnosing autism, were made available by increased insurance coverage, more credible diagnoses would be obtained. When folks who are not fully qualified to make diagnoses make autism diagnoses, inconsistency is certain. However, many families turn to these lesser-qualified sites for diagnosis because the gold-standard sites and diagnostic tools are unavailable to them due to lack of insurance or incomplete coverage. Surely, increased availability of gold-standard tools and sites is a more effective option than eliminating a group of neurologically impaired individuals from the DSM.

Thank you for your consideration.

And, there you have it my friends. VOLUMES more I could write to these folks, but they're being inundated, and these are the most solid arguments against the DSM-5. There are more, if you're interested.

In particular, some studies show rates similar to the CDC's estimate of 1 in 110 in populations pre-DSM-IV. Basically, there's a group of folks investigating the pre-1980 population (remember 1980 is when autism arrived on the DSM scene) and determining whether or not this population has the same incidence of autism. Here's what they're finding (surprise?!)...the pre-1980 population has the SAME 1 in 110 rate of autism that the post-1980 population has. The difference? Folks with ASD were just not diagnosed before 1980. So, the same amount of ASD people lived in this world before 1980 and after. The only difference? We now know how to treat and identify the folks with ASD. That's a good thing.

It's also been reported that Asperger's and high-functioning autism diagnoses aren't even included in the 1 in 110 number. If that's the case, then any "murkiness" caused by the inclusion of Asperger's in the DSM-IV is really irrelevant since those cases aren't even being considered by the CDC when discussing the autism "epidemic."

It's all very interesting of course, but it's really largely irrelevant in this household because it doesn't change our daily landscape. It would, however, make our Aspie feel even more misunderstood and left behind. For that reason only, I am in favor of these proposed changes falling by the wayside so that the DSM-IV stands, allowing children like 4A their very best chance at life.

Thursday, January 19, 2012

An Aspie and her self-esteem

I have so many posts swimming around in my head. So many resources gathered for sharing. I promise that I will get to it...one day, but life has a funny way of getting in the way of plans. How I LOVE the following quote: "Life is what happens when you're busy making plans."

Today, I need to talk about an Aspie and her self-esteem. This is kind of a misnomer, I suppose, because self-esteem, while it describes the esteem you hold for yourself, is really a social construct. Most of us perceive our worth based on what we're good at, how we feel about our selves, what we like. While ideally those things are intrinsic in and of ourselves (and once we become grown adults they usually are), those "things" that make up the esteem we have for ourselves are socially-bound, meaning that they derive definition or explanation or "meat" from social perceptions and social relationships. How would I know to have esteem about my kindness towards others if I haven't had a social education in what kindness is and what it feels like? Without getting too heady, I hope to have established that self-esteem is at least partly socially derived. Pyschologists can explain "self-esteem" better than I can, so I leave it to them (lame-o reference to Wikipedia pardoned, please).

So it is that many Aspies, because they have neurological social impairment, struggle in this regard. In fact, a friend, who herself has an Aspie child, once asked me about 4A's self-esteem. I was so confused that I flustered and fumbled through an answer. It was only later that I did a little digging and research to figure out why the heck that question was so hard for me to answer.

I contended at the time that self-esteem is something an Aspie can't really feel or get, certainly an 8 y/o one. By this, I think I mean that because she has neurological impairments that make it difficult for her to connect socially to the world and people around her that she has/will have difficulty in assessing her connections to groups whereby most folks gather their self-esteem. I *think* I still mean that.

But, here's where it gets murky. And, to be clear, being a NT living in an Aspie's world always feels murky. Fair, I figure, because it always, ALWAYS feels odd and hard and confusing to be an Aspie living in an NT-world. I digress...

4A is having such a hard time this year: with academics, with executive functions, with social connections, with everything! I guess I should really say that she's not having trouble organically; what causes the trouble is the NT mold/model/perception to which she's expected to conform. An example...All third graders should be able to record their assignments in their agenda books and manage their materials. NT third graders will get that with instruction and either (a) remember that when they get a shitty grade and have disappointed their parents and/or teacher or (b) they'll never get that far because, being NT as they are, they'll want to please their parents and their teachers and themselves, so they'll get it right quickly. An Aspie third grader can master this skill with modification; use a checklist for a visual reminder, reinforce the use of the checklist with immediate and long-term reinforcers, reinforce it further by letting her "earn" no checklist with compliance, reinforce further by reinstituting the checklist when she fouls up...over time, she'll learn to master that skill and wean off of the supports.

Why, you ask, does it take so darn long if she's so "smart?" Because the motivator for most children to get with the plan is SOCIAL; they don't want to get a shitty grade, make mom mad, or piss off the teacher. Conversely, it feels "good" to do things right; that "good" is a social feeling. Aspies have neurological social impairment, which means that they derive no benefit from this system because the reasons to get with the program are social and, thus, lost on them. You can get them to keep that agenda book complete and bring that shit home, but you're going to have to create incentive to comply artificially because the usual NT reason for complying is absent or lost.

Okay, so trouble and reason for said trouble have been established. Back to the murkiness.

I know that self-esteem is going to be hard for 4A because of her autism. I understand why. It actually makes sense to me (thank goodness I decided to be a lawyer and that I rejoice in logical exercises!). But, I don't know what to do about it. When one of my other NT children struggles in this regard, I'm all set and ready to go. I have books I can read about how to help, stories I can share with them, journals we can pass back and forth to talk if we can't do it face-to-face, and heart-to-heart chats all planned and at the ready. I've been trying these things with 4A a LOT, and we aren't making progress.


That part's easy. Because we are talking about social issues. Having a best friend but being ready to move on when the friendship changes. Best friend or group of friends, which works for you? Having a bag of tricks at the ready when you're feeling left out. Handling bullies and gossip and fights and all the absolutely horrifyingly degrading and maddening and demeaning shit that goes with being a pre-adolescent girl. It was absolute hell the first time around for me, and I can only imagine how much worse it's going to be as I vicariously live and parent it three more times.

Last night, she cried and cried and cried herself to sleep. Her best friend had seen a picture of her when she was a toddler, taken in the TWO YEARS that she refused to wear clothes. The best friend laughed and said, "That's so weird!" Three years ago, a boy told her she was fat. Someone saw her glasses, 6 months ago, and laughed because they say "Skechers" on them and "Skechers" are for shoes, not glasses. Kids think she's weird. She's a loser. On and on and on.

The trigger? She had forgotten her homework assignment two nights in a row. On the first night, I dutifully took away 5 pebbles and the next morning before school, I reminded her to bring it home. I also prepped the overcorrection worksheet she was going to have to do for forgetting to bring it home (this is the work needed to artificially create a reason to comply since the social reason is missing). On the second night, I took away 10 pebbles, reminded again, and prepped some more overcorrection. Teacher, GOD BLESS THIS WOMAN!!!!, intervened, with my blessing, and kept 4A in at recess to do the worksheet.

4A couldn't explain it, but she felt embarrassed. A social feeling! Hurray! But, she doesn't know how to process that because of her neurological social impairment. Instead, she got off the bus cheery, and when I asked her about her day, she said (brace yourself, please), "Horrible because you blabbed your big fat mouth to my teacher and I had to miss recess." Interject my parenting for the disrespectful statement and my reassurance that teacher and I are a team, that it's our job to help her, and that 4A really only has herself to be mad at for forgetting the damn thing TWICE.

Fast forward through supper, Tae Kwon Do, drawing, TV, games, fun with her sister, and bedtime, and all of the sudden, it exploded. Silly me. I left a little journal on her pillow with a note asking her if she wanted to be my journal pal. She said, in her deadpan/Aspie tone, "I found rubbish on my pillow." Then, she wrote me a HORRIBLY awful note about how it was for babies, her blabbermouth brother would tell everyone at school, and everyone, even her bestie, would hate her.

Oh my!

From this, she digressed into a verbal diarrhea of all that stuff I mentioned four paragraphs prior.

I was quick on the uptake. Think, Hollie. Fast! She's black-and-white, literal, logical. Quick. Okay, kid said you're fat. Are you fat? 4A: "I don't know. He said I am." (She can't figure out who she is on her own.) Well, your clothes fit, you eat healthy, you're a normal weight for your age, and you do Tae Kwon Do. I don't think your fat. 4A: "Well, I'm weird. Everyone thinks I'm weird." Okay. What are you good at? What do you like? What do you think of yourself? What does Bestie think of you? What do Mom and Dad and the kids think of you? To no avail. On and on and on. Over a stupid fucking notebook. Excuse my French, but SHIT! Why the hell did I have to put that damn thing on her pillow?!?!?!?!?!?!

Good thing I did, I suppose, because I got a small glimpse of what it feels like to be her. Being a kid is hard enough. Being a girl is worse. Being an Aspie has gotta be even harder.

I am trying to do right by this kid, but I'm feeling lost. I have feelers out to all of her docs for resources and ideas. They'll know what to do. I don't have to worry. Except that I'm this lovely creature's mother.

How can I possibly get her to understand, neurological social impairment notwithstanding, how wonderfully amazing she is? She's beautiful and smart and funny and creative and cool. She has developed such wonderful empathy for her baby sister and folks in need. She can draw anything, and I mean anything, after only one look at the original. She remembers everything (and I mean everything, which can be a double-edged sword). She can read whole Harry Potter books in two days, as a third grader. She used to be unable to dress herself, soothe herself, or comply with direction. She can do all of those things now without missing a beat. She blossomed and developed into this amazing creature when many folks weren't certain that she could. She used to be inflexible

and rigid
and terrified and anxious.

She still has moments of those things, of course, now, but they're managed, and she largely does the managing. She is amazing!

How can I make her see it?

I have always maintained that her autism is to be celebrated and shared and enjoyed. It is not embarrassing. It is not scary. It isn't "bad." She didn't do anything wrong. She isn't weird. People need to be educated to understand what autism is and why it happens. They need to adjust and grow and expand and move to comprehend her, not the other way around. Did I goof up? Have I made it harder for her because now on top of all of the other shit she has to deal with, she now has to deal with everyone knowing that she has autism?

Who the hell knows, of course. I'm not stressed. I'm not worried. I am a little sad. I am a little stumped. But, I have lots of support in her wonderful team. They'll know what to do. I just have to follow directions. That much I can do.

Saturday, January 14, 2012

Some resolution

I've reached some decisions about some of my crossroads.

For whatever reason, the blog seems to help folks, those living with autism and those without. It also helps me, honestly. I process things and work through them best by writing. So, it serves kind of like a journal for me. I will still continue to remind you INCESSANTLY that I don't know the "right" answers (that is, in fact, a term that I refuse to believe exists). There's a little more to this resolution, but I'll get back to at in a minute.

My family
I've made some strides here, and I'm feeling on a bit steadier ground. There are two main components to this.

First, I'm saying no a good bit more, not answering every call for lending a hand with PTA, school, Girl Scout projects, or every wonderful project or cause that comes down the pike. I do a lot in all of those areas as it is. I don't say that in a brag-y way but in an "I'm doing as much as I am capable here, I am helping, and someone else can have a turn." I know that if I always say yes, then I might be taking someone else's chance to say yes. This is laughable, those of you who volunteer know, because I don't think loads of folks are out there waiting around and dying to help but not having the chance. But, just because there's a need in these areas doesn't mean that I have to fill it. Not that I don't and won't help, but I will only help when/as much as it works for my family and my sanity.

If something comes on board, something has to go. So, for example, I am joining a women's group at my church in the spring. I want to. I need to. That's going to take up some of my time. I have to trade the time for this group with time that I'm already spending else where. Kind of like a budget cut, I suppose.

Here's the deal, friends. This is my time. I have the same amount of it as you or anyone else. I get to decide how I want to spend it. Those decisions are, of course, directed or filtered through my family and my faith, but they are decisions.

I think this concept alludes lots of folks. As in, "Well, I have to work, so I don't have time to do that." Or, as in, "Well, I already help with X, so I can't help with Y." Please be clear. These are choices. No one gets to tell you how to make them or judge you for why you make them. They are yours to make. But, they are choices, even when they feel like they aren't. Lord help me, I think my Dad was right...eek!......everything in life really is a choice. Gulp.

Collaterally, I am no longer willing to fill the gap for others in my life who are capable of doing their share. 4Daddy, my children, other parents in my children's classes and activities. Now, this doesn't mean that I'm holier than thou and trying to set other's priorities for them or make their decisions. I am, however, being clear that where a group of folks shares a common goal or activity, then the work can and should be equitably distributed amongst them.

With regard to the other grownups in my life, I have realized that I chose to stay home and not earn a wage (even though we desperately need that wage to keep our head above the water with law school loans, get me more than two pairs of pants that fit, have more or better medical benefits, and afford all of the activities that our kids want to do), but that does NOT collaterally mean that I have decided to put in equity hours for others who have made the choice to earn a wage at this time in their lives.

With regard to my children, I have realized that they are, at times, overly needy because I have allowed them to depend on me too much. Why on earth would my 8 y/o Aspie wipe her own ass if I continue to do it for her (remember that she derives no social benefit--read lack of embarrassment or pride--in doing it herself)? How on earth is my incessantly thirsty and hungry 7 y/o going to pour his own drink if the jug is too heavy for him? This list goes on (and, in fact, feels never ending), but you get the drift.

The buck stops here on all fronts. If the folks and children in my life don't like that, it's actually too bad. Like I tell my children every solitary day, life is all about what you don't want or like or need. Get used to it now, and you'll be happier for it.

Secondly, I am making a concerted effort to keep my time and my family's time separate. When my children are awake, we are working on household responsibilities together AND (mostly, I hope) learning and intentionally having fun and helping others together. It's working much better for me this way. I don't feel so aggravated with them and their needs because it's their time (I'm not trying to usurp it), and we are working together on making them more self-reliant.

Of course, mommy breaks are still needed. I liken it to this. When you're making soup, you want to bring it to a boil before you simmer it. You wait and wait for it to boil. If you catch it at the right time, you can vent the lid and keep it from boiling over. If not, it boils over and makes a mess. I told you before. I hate to clean. I'm catching this soup of life before the shit boils over. I would prefer to vent the lid with breaks and coffee dates and time alone so that it doesn't boil over. However, at times, of course, my timing sucks and the damn thing boils over. Boiling over equals me yelling and saying stupid mother shit like, "If I have to get involved then you'll really have problems." Yelling, of course, is better than beating them, but it still doesn't make any of the five of us happy; it's still a mess that has to be cleaned up.

As an aside, I patently refuse to feel guilty about yelling; that's life. I try my best, but shit happens. I am very clear that I always, always love them, even when I yell. And, I know how to use the Yellow Pages (remember that thing?!) to find a therapist for them if they need it. So I should be able to make good on the bouts of yelling one day. Or not. Oh well. That's life. And, lots of people are going to yell at them in this life. They are going to have the opportunity to yell at lots of people in their lives. What I hope to teach them with my yelling is not that it solves problems (because it doesn't), but when it happens, you apologize and you try harder next time. Genuinely try harder. Meaning actually trying not to do it again (that "trying harder" concept needed definition for my Aspie, I learned). Better, of course, not to do it in the first place, but no one's perfect. When you screw up, own it and make it right.

My faith
This is, of course, what truly drives the blog decisions and life decisions. I thought and prayed about how much to divulge and in what way to divulge it. He and I are square. I plan to be a bit more heavy-handed in revealing His hand. However, I remain unwilling to be didactic about it; in my relationship with Him, He doesn't require that from me. A scriptural literalist or fundamentalist I am not. But, I do have a very active, reciprocal, loving, fun, hopeful, amazing, helpful, and honest relationship with my Buddy. I ask Him for guidance and help in everything that I do, especially my parenting. He knows I'm gloriously imperfect and trying my best to honor Him in this amazing life that He gave me. But, He and I have an agreement or a work-in-progress about discipleship. And, it does not include didacticism. More to come on this, I'm sure, but please rest assured that the purpose and content of this blog will remain mostly unchanged.

I'm hard at work over here on posts on empathy (for Aspie kids and NT kids like), making IEP decisions, and Aspie's conceptions of self.

Stay tuned...

Saturday, January 7, 2012

I've been at a crossroads about the directions I want to take on this blog, as a mom, and in my life, generally. Forgive my delay in posting. I finally decided that I could post about it rather than waiting to post after figuring it out. Figuring it out will likely take time, I expect. And, since you all hang on my every word (HA!), I hated to keep you waiting. ;)

The blog
There are a couple of crossroads-type issues that have surfaced for me. First, while I've always felt that blogging was narcissistic and borderline obnoxious, I felt compelled and called to do it, at the gentle suggestion of some of 4A's doctors. If I can meet a need in the autism community, I rationalized, then I can willingly suspend my reservations about narcissism. Additionally, some of my mommy buddies have lovingly "pestered" me to share my "keep the kids busy" and creative ideas in a more codified fashion, one that they could refer back to after our conversation had ended. Again, I rationalized that I could suspend the aforementioned reservations if I was satisfying a need.

Fast forward a few months into the blog, and here are my thoughts now. While I may, in fact, be serving or meeting the needs of the autism community or harried moms, I still have reservations: two specifically. First, I still think it's narcissistic, and I am absolutely unwilling to present the notion that I either know what I'm doing or that I'm doing anything the "right" way. Just because something works for me as a mom or for my children or in our happy version of high-functioning autism that doesn't mean that it will work for you or anyone else. While this notion is very clear in my mind and while I try to remind you all of that, I still can't really escape the narcissism. Second, while I'm a helper and a care-er by nature, I must remember that my needs and the needs of my family come before anyone else's, no matter how much those around me do need help. I often lose sight of this, letting my priorities get all out of whack to do something that I want to do (like blogging).

Hence, the crossroads.

My job
I must digress a short moment. A year or so ago, I was sharing a volunteer job with a woman who holds a paid job and is also a mom. We were feeling overwhelmed in our volunteer job, so in an effort to get some perspective, I said, "Look...if it gets to be too much and either of our jobs get in the way, then we'll just cancel or do without. Oh well!" She said, "You work?" ;) I smile because my feelings were not hurt, I promise, but I'm clear that plenty of folks don't see my choice as a job. Neither here nor there; I just found it something to smile about. Perhaps you may, too.

So, back to the "career" crossroads. I haven't been as happy as I'd like in my job for a few months. Job dissatisfaction on some level, I suppose. I have struggled with anemia and reflux for years. By struggled, I actually think I mean ignored. Being pregnant or nursing someone for over nine years without break has that effect. That explains a hefty portion of the physical and emotional fatigue and burnout, I think. I am constantly needed. That, in and of itself, is a wonderful, glorious thing, but it has a way of wearing one down if she's not careful to replenish her reserves. I haven't been too careful. I'm working on those remedies. Slow and steady wins the race. My burnout, physical and emotional, didn't happen over night, so it's not going to be fixed overnight.

But, it's occurred to me, upon reflection, that I have again had my priorities out of whack. And, here comes the narcissism mentioned above, again. These are my priorities based on who I am as a person, what's going on in my life, my circumstances, my issues. They have nothing to do with you. By assessing my priorities and recounting them to you, I make no statement whatsoever on your (or anyone else's) priorities.

Having made that explicitly clear, I hope, I shall continue. There are a lot of things that I really enjoy as a person. I love volunteering and crafting and organizing, specifically. I have let myself do a lot of those things when I haven't really had the time available for them. I think it was my way of keeping myself autonomous in a sea of never-ending needs, but here's what happened. Not having enough "free" time to accomplish these things that I love, I took or used or borrowed that time from my family. I tried to do my things on their time, specifically my children's time. What happened then, I think, is that I got more and more irritated with my family's needs because they were interfering with and interrupting what I wanted to do. I got resentful. I got bitchy. I got fed up.

Another crossroads. How do I meet my own needs while meeting those of my family? I think every mom feels this. I don't have a paying job to call my own and give me worth and value in the world. I want it that way because I'm too much of a chicken-shit to let someone else take care of my babies all day. I have sacrificed a LOT of "stuff" (most of it material and emotional) to stay with these guys all day. That's cool with me, but I guess I'm having trouble being mom and person at the same time.

Crossroads #2 established.

Life, generally
I have purposely withheld the following information with you for a very intellectually and philosophical reason. The reason first. I know how desperately folks who live with autism need/want help. I remember how much someone in the early stages of the autism journey (I used to be one of you) looks to families further along in the journey for support and help and answers and instructions and resources and reassurance. I also know how folks want secular answers, whether they live in faith (to whomever or whatever) or not. So, I have purposely withheld the faith portion of my journey as mom and person and autism survivor because I didn't want to alienate anyone who came here for secular help.

Here's the crossroads, then. For me, the journey is not entirely secular, in the sense that it is not secularly driven. I withheld that for what I believe was a logical reason. That logic is no longer sitting well with me. How do I help all who are looking for help with autism while being true to the faith portion of my journey? I know (again because I used to live in this category in my younger and "smarter" years) that the mere mention of faith will inspire plenty of folks to jump ship. That's okay, of course, but then I'm not meeting my original purpose of helping those who live with autism. If I keep the faith part out so that I can help all, I don't feel true to myself or my faith. What to do? What to do? What to do?

Crossroads identified. Solutions, resolutions, or answers pending. Stay tuned...