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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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At Home in Autism

  • Posted on December 19, 2011 at 8:00 AM

Spinning body, flapping hands, autistic brain,
My sweet child: Different as gold from grain.
Desperately seek to understand today
How words once were, now gone, can stay.
Cuddle him: ridged and tight, he clings to me.
I need to know what to do to set him free!
Should I trust the doctors who tsk and say:
“It’s Autism locking that child away.”
Or are there poisons his body does accrue?
Do I look to hyped-up spin for answers true?
Is autism a prison, a snatcher, walls closing in
‘round the normal child trapped by sin?
Or is it a way to be different from you or me?
Does my son just grow, live and love autistically?
Some parents choose the path to cure in spite,
Rule and dominate with their superior might.
Others choose to love, nurture, and accept,
Their child—a person—without clause or except.
Should I struggle through information overload
Seeking to spin nourishing grain to gold?
Or should I give up the normal for the good and right?
Yes, spin and flap, sweet child—a beautiful sight.

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May I Have Your Attention, Please?

  • Posted on December 16, 2011 at 8:00 AM

There are many ways to be an advocate. There are many causes we can cling to and many ways we can do it. I tend to be a broad scope kind of advocate. There are too many issues and too many grievances for me to hunker down and focus on one. I’m not really the go-to-gal for anything. Geez, I can’t even stick wholly and purely to autism.

There’s nothing wrong with that.

But there’s also nothing wrong with having a focus, a cause, a very real problem you want to shout about from the rooftops.

Sue is a dear friend with a real problem. Her daughter is the victim of bullying, and has had a hard time coming to grips with all the ramifications of her experiences. Her daughter is also a child with autism, particularly Asperger’s. As a girl, she was misdiagnosed and improperly “treated” for a long time. Sue is a proud mom of her autistic daughter, and all for autism pride and acceptance and respect and all those good things. But she’s focused on bully, because that issue has had such a dramatic and negative impact on her family; and she’s not feeling the love and support her and her daughter need.

There’s nothing wrong with my approach to advocacy. But there’s nothing wrong with hers, either. She supports the other issues involved with autism. But her focus is on bullying. There’s room in this community for both kinds of advocates, and for all the kinds of advocates in between. We should support each other. Sue and I are proof that we can support each other.

Believe me, bullying isn’t a topic you should ignore. Bullying hurts. It hurts the victim. It hurts the witnesses. It hurts the bullies, too. I have no statistics to back me up in this, because, after all, neither statistics nor bullying are my areas of expertise, but I feel 100% confident that your child is going to be bullied, be the one doing the bullying, or witness bullying. Both my two bigger boys, one who is “cool” in all the typical senses of the word and one who is “cool” in the unique way that he is and in the awesome way that he’s been embraced by his peers, have witnessed bullying. Both boys have had bullying touch their lives. My “cool” kid, the one who I’d have least worried about being the subject of bullying, at least at school, has actually been the one to experience it the most. He’s had friends who were bullies, he’s been bullied, and he’s see those he loves being bullied by others—sometimes by his own friends. Willy, who is lucky to be embraced by his peers as a “different kind of cool,” has seen his friends bullied and has been hurt by what he saw. I’m proud to say that both my boys have spoken out against bullying.

I’m proud of my two boys who go out of their way to condemn bullying. But they got that way, in part, because of what I’ve shared with them. A lot of what I’ve shared with them, especially lately, has come through the information, links, and other tidbits that Sue has shared with me. Simply said, Sue is helping me raise better children. I’m grateful for that, and I’m proud to know her and call her friend. It saddens me that, as supportive as I know this community can be, she’s not getting the kind of support and encouragement she needs. She’s doing good work. Please, check her out, support her efforts, and take a few moments out your day to spread the message that bullying is not okay, that it hurts, that the damage can be lasting and painful. Stand up against bullying. It doesn’t have to be an all or nothing proposition. You don’t have to make bullying your one cause. But, please do something to let those people who’ve been the victims of bullying know that you care. Do something to stop a bully from thinking their behavior is acceptable. Just do something.

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My Little Cheesehead is Growing Up

  • Posted on December 14, 2011 at 8:00 AM

Alex turned twelve over the weekend. For eleven days out of the year, Willy and Alex are “the same age,” which pleases Willy to no end, though Alex doesn’t seem to care one way or the other. To celebrate Alex’s birthday, we had an Alex-centric meal of pizza, followed by brownies, because he prefers brownies to cake.

Alex is very much a Wisconsinite when it comes to the consumption of cheese. Cheese is Alex’s primary source of protein, including cheese sticks (not individually wrapped), grilled cheese sandwiches, and, of course, cheese pizza. He likes to peel the melted cheese off the pizza and squish it into a cheese-laced-with-tomato-sauce blob. Then, he eats the blob. He eats the pizza crust last. Well, he might. But he might not. This time he ate some of it, but concentrated on the cheese on the pizza and the breadsticks. He’s a very loyal cheesehead, just so long as you don’t expect him to care that the Packers are kicking butt.

Of course, when it came to presents, he had to get something VeggieTales, so I got him The Pirates Who Don’t Do Anything. The boys love it, though apparently it’s not as good for stimming as Moe and the Big Exit. I also decided to try something new. I bought him a gyroscope. I figured as much as he likes to look at things from all angles and as much as he likes things that spin, a gyroscope might be a good toy for him. So far it’s been met with a mixed reception. He likes it, but it’s not as interesting as VeggieTales. Go figure! One the up side, I learned the basics of how a gyroscope works, though this one doesn’t seem to be properly balanced.

As wonderful as Alex’s birthday celebration was, I can’t help but take a moment to reflect on Alex getting older. He’s twelve. He’s a pre-teen. In a year, he’ll be a teenager. Somehow his delays seem more significant in that context. While other kids his age are starting to look at gender differences and are exploring their feelings towards potential dates, Alex is still watching a show which is designed to teach little kids Biblical lessons.

I’m guessing that pronounced developmental differences like these are what lead to the perpetual-youth-myth when it comes to kids with severe disabilities. The myth certainly does have its appeal. How do you teach a young man who doesn’t talk, who has little control of his own waste removal, who is still fascinated with little kids’ shows, who, as per his own behavior, seems like a little kid, about his own sexuality? How do you prepare this young man for the decision he’ll face as an adult?

It would be easier to deny his sexuality and impending adulthood. He has the mind of a child, so he is a child. He’ll always be a child. We will always have to make his decisions for him. He’ll never be sexually active. He’ll never decide how he wants to live as an adult. That’s just the way it is.

There’s something appealing about that line of thinking. You see, if it were true, it would make things so much easier. And that’s the crux of it. Being a caregiver—oh the tremendous, horrible burden of caring for someone with special needs!—is easier than conscientiously parenting a child with special needs into the adult they will become, and putting the work and the skill-building into the effort so the child will be the best adult they can become.

It would be easier to deny Alex’s maturing sexuality, but I can’t. If you’re willing to admit and are in position to observe his more intimate functions, like changing diapers and bathing, you’ll realize that his sexual development isn’t going to wait for his emotional and mental development to catch up. It’s already started. To deny that won’t help anyone. Which isn’t to suggest that I have any idea what to do about it, but it does mean we’re going to have to come up with something better than burying our heads in the sand singing la-la-la-I-can’t-hear-you.

It can be difficult when your child becomes a teenager, as Brandon has proven for us. It will be difficult helping Willy to grow into his new role as a teenager. In a way, we don’t have to worry about some of the same things with Willy that we do with Brandon. But we’ll worry about other things. Alex becoming a teenager is going to be something else entirely. I just don’t know what yet. I don’t know how we’re going to handle that or what we’re going to do. For a long time, these problems seemed so very far away. Now, they’re almost here and I don’t know what to do.

But I do know that I won’t fall into the perpetual-youth trap. Easier doesn’t make it better. It certainly doesn’t make it honest. Alex is going to mature. He is going to become an adult. And it’s my job as a parent to figure out how to help him do so as best as we all can. Just like it’s my job to help Brandon and Willy become the best adults they can be.

It’s not about what’s easiest. It’s about Alex. And Alex grows, matures, and changes, even though his development is at its own pace and on its own track. He may not appear much like a typical pre-teen, but he is a pre-teen nonetheless. His body is maturing. He’s growing up. Denial is not the answer.

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Feeding Issues: What Do You Want to Know?

  • Posted on December 12, 2011 at 8:00 AM

When Alex was first “threatened” with failure to thrive, I looked for information outside the clinical setting. At first, I didn’t find anything that could help me with Alex. Sure, there was generic information geared towards the needs of infants, but Alex was not an infant and sensory aversions weren’t even mentioned in the articles or database entries I could find. I was surprised and disappointed, to say the least.

Furthermore, my research about autism and diet or autism and feeding would often turn up results that I had no interest in. I’m referring to GF/CF diets, herbal supplements and the like, all claiming to alleviate or cure autism to one degree or another. Now, I readily admit we tried the GF/CF diet, which turned out to be a good way to starve our kids. (Not that we let it go that far.) After all, the reason that Alex was on the verge of failure to thrive was because he’s very stubborn about what he will and will not eat; and bread that is GF/CF is not, to Alex’s mind, actually food. (Honestly, I’d have to agree with him on that.)

Later, I stumbled across some information, but it was written by researchers for researchers or medical professionals, not for parents. Occasionally I’d stumble across a pertinent article, but rarely did it offer anything new or insightful.

Now, Alex and Ben are both doing well. They’re gaining weight. Both of them actually have a visible layer of fat around their muscles! As much as obesity is a problem in this country (and a personal problem, in my case), fat on my kids is good. They’ve got plenty of energy, which wasn’t really a problem for Ben, but it used to be a problem for Alex. They’re both expanding their diets and getting the nutrients they might otherwise lack through prescriptions of PediaSure. In short, they’re thriving.

It’s been a long road and now that we’ve traveled so far, I’m hoping to gather information from reputable sources and create a guide for others to use, the kind of guide I wish I’d had.

Along those lines: Do you have experiences with feeding issues? Would you like to share them? What questions would you like answered? Let me know in the comments or contact me directly.

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Bowling Update

  • Posted on December 9, 2011 at 8:00 AM

Did I tell y’all that Willy is bowling now? He joined a league and everything! I know I mentioned it on Facebook, but I don’t know where all I’ve said it, so if this is news, I’m sorry. That’s the trouble with multiple platforms, I guess.

Bowling is an interesting sport. Not only do you have your special shoes and your mysterious rules, but you’re playing this sport in a neon-lit whirligig of activity. You switch lanes every other turn. People mill around you socializing. Other bowlers shout out their victories or bemoan their failures.

Then, there are the social aspects: interactions between teammates and between teams, comments from parents and spectators, directions from the coach to the kids. And there are the physical aspects: the weight of the ball in his hand, the sequence of steps which is more complicated than it seems, and the need to heft, to swing, to aim, and to release. And then there’s the lingo: strikes and spares, pickups, and gutter balls…I’m sure there’s more, but that’s all I’ve picked up so far.

This is a complex little microcosm that Willy has scuttled into. And I’m at something of a loss on how to help. Suffice it to say that I can’t teach Willy to bowl. Though, I do observe what other players are doing and what Willy’s not, and the results of those differences. Like, every time he points his thumb at the gutter right as he releases the ball, the ball goes straight into the gutter before it gets even halfway down the lane. This, if you weren’t aware, is not a desired result. So, I try to advise Willy on that angle. But mostly I just encourage him and try to pick up what I can from the helpful people around me.

Willy’s talked about quitting once, though it was after a four-day weekend, too little sleep, and the challenges of re-adjusting to his schedule. By the time he came home, he decided he wanted to stick with it, but that he really wanted me there. I wasn’t looking for another time commitment, and I really don’t feel very useful, but if it helps him in some small way…then I guess I’m going bowling. Just not for the actual bowling part of it.

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Special Education: What Do You Want to Know?

  • Posted on December 7, 2011 at 8:00 AM

Now that I am concentrating on my nonfiction, instead of copywriting or resume writing, it is time to pursue certain opportunities that are available to professional writers. One such opportunity is a syndicated column. While there are many topics I could create a column about, one that is dear to my heart is special education.

With this possibility in mind, I would like to ask: What would you want to know? What mystifies you about special education? What frustrates you? What problems do you want solutions for? What insight, ideas, and interests do you have?

Are you a parent with a child who receives special education services? Are you a special education professional trying to do your best for your students?

Please leave a comment below or contact me directly with your answers.

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A Vision for the Future

  • Posted on December 5, 2011 at 8:00 AM

Lines are drawn in the sand. A community of interested, active participants is divided and shattered into ineffectual bits and pieces. People who care, who are knowledgeable, who mean well, who are willing to work for change…people who should work together butt their heads against each other, wasting their energy on each other, arguing with CAPS, shouting across picket lines, reveling in the damage done to the other side. As these divisions are formed, it seems we are drawn to dichotomies. However much we know there are many sides, many points of view, and much room for both agreement and disagreement; we inevitably boil it all down to “us” or “them.” And those who wield the power go on their merry ways, sacrificing the welfare of the many for the profit of the few, with no concerted effort to thwart them.

The environment is discouragingly familiar. I find it sad and disappointing that I could be describing the autism community. You see, I left that environment years ago when I left the political blogosphere. I was tired of watching the citizens that make up this democracy turn on each other while those who held power exercised it with impunity. While there are legitimate debates between conservatives and liberals, and all the mid-points in-between, I couldn’t stand watching either side defend their dirty politicians as if their talking-points were motivated by anything other than political self-interest. (Full disclosure: I was party to such behavior early in my foray into politics; it was listening to other “sides” that helped me to see what was going on and it was my affinity for “the big picture” that made it clear that positive change wouldn’t come out of such dialogues.)

I didn’t expect that scene to be replayed in the autism community. I didn’t expect to see the different sides within that community turn on each other with such force that it risked grinding the forward motion of the community to a halt. Yet, I see it happening.

Sure, there’ve been disagreements from the beginning. There have been sides. Some could be dismissed as fringy quacks. Others were in natural opposition. But lately it seems there is less and less reasonable discourse and discussion among those who used to be capable of it. Instead, we get vicious diatribes. There doesn’t seem to be much room any more to speak and be heard by anyone who doesn’t already agree with you. While self-advocates and parent-advocates are duking it out, those with power go along their merry way.

I close my eyes and think about Gifford and the horrible days that followed her shooting. I think about how each side, pretty much ignoring what happened, turned on each other. I think about the recent snafu involving a Republican something-or-other distributing an image of President Obama as a zombie with a bullet through the head. I think about the verbal attacks that followed. I’m not a Gifford fan. Nor am I an Obama fan. I’m just a citizen who wants the middle ground to have a voice, too; a citizen who would rather work to fix what’s wrong with this country than argue who is to blame for its unavoidable ruin.

I close my eyes and try to imagine the autism community reaching the same caustic point. I wish I could say it was unimaginable, but the way we’re going…it’s not. I can close my eyes (and without the benefit of mental pictures) see just how far astray this community could go.

I left the political blogosphere because I couldn’t stand what I was seeing. I’ve “spoken” with several people in the autism blogosphere who are considering doing the same. With all due respect to what they were trying to do, the people who are calling that recent “dialogue” snafu a success have closed their minds to the terrible consequences of their poor judgment. Diatribes and personal attacks are not steps towards productive discourse. For many, that was a last straw. They’ve opted out of such “discussions.” Now, if their voices are heard online at all, it will only be by those who are deemed “safe.” If that’s a victory, then we all might as well pack our metaphorical bags and go home, because if fractures like that continue to be hailed as victories, the autism community will shatter.

I, for one, don’t want to see that happen.

Time is against me. I have an idea. But it has to be done right. I need resources I don’t have. I need collaborators and contributors. I need time. My conservative estimate is that I will need eighteen months to get everything into place in order to launch my idea to the public. A lot could happen in eighteen months. Voices may be lost. Irreconcilable differences may be formed. The autism community could easily shatter in eighteen months.

But I can’t walk away this time. I have to try. And I need to hurry.

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Embracing Chaos: The Book

  • Posted on December 2, 2011 at 8:00 AM

As some of you may recall, I want to write a book called Neurodiversity at Work. I still do, though in my recent upheaval I took a good, hard look at this goal and the skills and proficiency required to pull it off. I also looked at other autism-related books I would like to write. And I came to the inescapable conclusion that I would need to write two other books before I could broach Neurodiversity at Work with the experience, skill and connections it deserves.

When I first started this blog, I had a book in mind. It was something of a cross between a memoir and an advocacy piece. At the time, I wanted to make the idea viable for traditional publishing, and for the intervening years I didn’t see a way to do it. The audience it could be expected to reach within the first year or two of publication just wasn’t large enough, not without changing the focus of the book dramatically. For the last two years, I’ve been researching self-publication, and I find I’m drawn to it—at least as far as nonfiction goes. The relatively narrow audience for the book doesn’t matter nearly as much if the book is self-published; if you have the skill and wherewithal to market the book, you can profitably self-publish a book with a narrow audience.

So, in turning away from Neurodiversity at Work, I’ve come full-circle back to my first book. This time I’m not dwelling on how to make it marketable to a traditional publisher; I’m dwelling on how to make it a book that fulfills a need for its audience. It will never be a bestseller, and that’s fine. This book, like this blog, is for people who already care, for people who want to understand autism in a way that doesn’t reflect our fears of difference, but instead reflects our desire to understand, uplift and assist those we love who carry the diagnosis.

In outlining and writing this book, I’m taking great care to ensure one important difference that sets my book apart from so many parent books: I’m not telling my children’s stories. Of course, it’s this difference that will make it less appealing to traditional publishers. Embracing Chaos: Discovering Autism and Neurodiversity will tell my story. In this book I will describe how I came to see autism and neurodiversity, explain why I have the priorities I do when it comes to raising my children and advocating for change, and invite others to join me. I’ve seen so many books that purport to tell the stories of autistic children, while really advocating for whatever treatment or approach the parent chose for their child. Those books, the kinds of books published by traditional publishers, promise a cure, a recovery or some other conclusion that promises a semblance of normality. My book will show that normality doesn’t have to be a goal, while arming those seeking a different path with insight and resources to help smooth their journey.

But it’s not just a book for other parents. There have been so many times when I have tried to verbally explain to those on the periphery of our lives what I believe and why. Often, due to my own struggles to communicate verbally, it seems necessary to direct them to my blog and the list of blogs on my sidebar to really make the point. This is fine for those who are comfortable in the blogosphere, but many aren’t. If I had a resource, a book, that could explain it—I would gladly have directed them to that instead. And this, for me, will be that book. But while it will be my story, my journey, I also want this to be a book others can hand out to those on the periphery of their own lives. So, it’s not a traditional memoir, either. It is intended to be a source of information and understanding for those of us who refuse to take sides, or rather for those of us who feel that there are answers and truths evident in multiple arenas within the autism community. (After all, it would be disingenuous to suggest we don’t take any sides at all.)

I hope it’s well received by those for whom it is intended, by those who—like me—feel they need a resource, a reference, a tool to stave off those exhausting conversations in which we try to justify to those who mean well why we, too, are not adamantly advocating for a cure. I hope it’s also a book that adult autists might read to gain insights into us parents who, while not supporting and agreeing with everything they say or do, really are allies in our goals to make this a better world for all those deserve to be heard, appreciated, understood and accommodated.

That is my hope. Only time and publication can determine if I will achieve those goals. But I have to try. I have to set the stage. Then, I have to move on to other issues that need to be addressed.

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