You are currently browsing the Autism Issues category

Post-Op: My Tough Little Man

  • Posted on January 30, 2012 at 8:00 AM

In many ways, Alex still seems like a young child.  He enjoys Veggie Tales and other forms of entertainment geared for younger children, though admittedly Veggie Tales is one of those things that can be enjoyed for a lifetime.  He’s reliant on others for daily care needs.  He struggles so much with relatively simple tasks.  From a strictly “independent doer’s” perspective, Alex is very much like a young child.

But Alex isn’t a young child.  He’s a young man, a tween.  He’s a boy learning how to become a man. Brandon and Will’s paths to manhood, though each different from the other, have been more or less typical.  They each have their atypicalities, but the paths themselves form a linear progression, with ups and downs, regressions and bursts of development, lags and rushes, but more or less straight courses moving forward.  Their gains in independence have been fairly easy to mark and recognize.  Alex’s path is very different.  In some areas, he seems to make very little progress.  In others, he’s growing and changing.  But you have to be willing to see it, to recognize it, to acknowledge it.

Certain events and experiences show our characters.  These events come in many shapes and forms, but all represent hardships of one kind or another.  According to the movie, Shadowlands, C.S. Lewis compared these experiences to the master artisan chipping away bits of stone to form the beautiful statue we are to become; it’s painful, but necessary.  Other Christian references refer to the refiner’s fire or baking clay to make pottery.  The idea is that God is crafting us, as any master craftsman crafts his creation, and we are becoming more perfect by our times in the fire.

But not everyone survives this process, let alone becomes more perfect because of it.  We all struggle, we all fall, and we all fail at times, but some of us get back up and try again, try to be better.  Some of us sell out to earthly temptations.  Others break under the strain.

The vessel that is Alex—the outer shell, the body and its limitations—is childlike in many ways.  But inside Alex is growing strong and sure.  He endures.  He seeks comfort when it is needed, and accepts it when it’s offered, but he no longer clings to me as he did when a little child in truth.  He’s growing, he’s enduring, and he’s becoming the man he will be, slowly and surely.

I don’t know how to put into words what I observed.  It wasn’t so much a matter of doing.  It was how it was done, the spirit it was done in, and the way it was done.  Once, Alex was the happiest person I knew.  Despite his limitations, he was joyful and happy and exuberant.  The spirit shined and it was a light in our house that shone brightly and with a constancy that I dearly miss.  But the limitations and frustrations, not to mention the daily trials and intrusions Ben has placed on his older brother, have worn away that shine.  Alex is struggling.  But, as he suffered his recovery from surgery that first day in my mom’s house, I saw a renewal of that spirit, a glimpse that assured me it wasn’t gone or worn away, that it would shine again it its own time, as it shone that day he bore his pain and his new, if temporary, limitations.

The next day, Alex was back to struggling and discomfort, irritated and aggravated and frustrated.  But the light is there, waiting, banked against the daily trials, looking for the chance to shine again.  The vessel may not be perfect by man’s standards, nor even normal and acceptable; the spirit may still need perfecting by God’s standards, as we all do; but the soul in that little boy, who is becoming a man, is a great soul, full of something special that has nothing to do with “needs.”  Someday, and I’m committed to this, I will help to find a way for Alex to share this with the world, for he has something to contribute, something to be “productive” about, and I will not all that contribution to be stopped by earthly, able-minded prejudices.

Highlight It

2 Comments on Post-Op: My Tough Little Man

Pre-Op Excellence

  • Posted on January 25, 2012 at 8:00 AM

Sometimes, I can’t help but feel that Alex has had a hard time of it.  It’s not just that, of my three boys, his autism is the most severe.  Or that he struggles to communicate even simple needs, and is predominantly non-verbal.  He grows frustrated, and acts out with aggression.  His sensory system is under constant barrage, it seems, and I can’t seem to find a way to help him manage it.  He’s had his tonsils and adenoids out, due to frequent illness.  As a baby, he experienced reflux disorder, which made the simple act of eating painful.  His eating habits grew worse, though, for a long while, instead of better.  He’s had one hernia surgery.  Despite, surgery on his eye, he’s likely blind in one eye, because he would not cooperate with the treatments that would help strengthen his eye and retain its vision.  Now, he’s having another hernia surgery, to repair the hernia on the other side.  His health has never been terrible, but it’s never been terrific.  Poor nutrition due to his self-inflicted dietary limits, plus the delays, have given him a susceptibility to colds and flus that seem to last longer with him than with his brothers.  To top it all off, of the three boys, Alex is the only one who hasn’t retained a deep attachment to a special therapist from his intensive program.  In retrospect, the intensive therapy he received was a sham—a waste compared to what it could have and should have been.

I know there are many children, some with developmental delays even more severe than Alex’s, who have experienced even more health issues than he has.  Many children have to struggle through without even the opportunity to receive the kinds of therapies and supports that Alex receives.  I know this, but it’s not a comfort.  Of my three boys, Alex is the only one who has had to endure surgery.  This is lucky.  All Alex’s surgeries have been fairly minor, straightforward procedures without complications.  This too is lucky.  But, as much as I tell myself these things, I can’t help but feel like Alex got the short stick from amongst his brothers.

Now, it might seem like I’m feeling sorry for myself.  I’m not.  This isn’t about me at all.  But I do feel strongly that, somehow, I’ve let Alex down.  Everything we’ve tried—it’s not enough.  Sometimes it seems all the love we can give him isn’t enough to ease the hardships he faces.  He’s a wonderful, talented boy.  This I know.  And I worry that, as hard as it’s been, when he has to go out and fight for his right to be himself and to be recognized as someone with a positive future, that it will get harder still.  I love him, and I feel so tenderly for all that he has faced and all he has struggled through, and that I, as his mother, have failed to ease his way.

It was with this somber mood that I left the surgeon on Thursday, who confirmed that yes, the swelling in his testes was another hernia, not hormones, and who felt the urgency warranted a quick turn-over.  Alex would be in surgery on Monday morning.  I took Alex to his pediatrician on Friday, for a pre-surgery physical.

After the nurse did her thing, Alex’s pediatrician did his.  When it was all done, the doctor leaned back on his heels and nodded, a satisfied smile playing across his lips.  “Is he okay for surgery,” I asked.  “Oh yes,” the doctor said, “he’s okay for surgery.”  He looked at me, our eyes meeting briefly, and the smile grew larger.  “Alex is in excellent health,” he said, the dignified smile growing broader.  The significance of the news must have registered on my face in some way, because the doctor nodded, looked at Alex, and said, “You’re doing great, young man.  Keep it up.”

I don’t know for sure what Alex felt or how much of the exchange he understood.  I think he was just relieved that this doctor didn’t push the herniated intestine back into place.  (Which I had watched with freakish curiosity and wide eyes as the surgeon did so the day before.  Alex didn’t cry or anything, but that could not have been comfortable.)  Alex tried one more time to fit “Veggie Tales” into the little username box on the computer in the room, and then he let me help him get bundled back up.  Snow streamed by the window, hiding the street beyond, as I helped him into his snow pants and zipped his coat.  Alex focused on the snowy show.

When I got Alex back in school, I couldn’t help but share the news with his teachers—both the old teacher and the new one.  Then, as soon as I was able, I had to share the news again with my husband, in e-mails, and on social media.  It’s a hard-won victory and those words, “excellent health,” so much so that it almost makes up for Alex needing another surgery.  Almost.

Highlight It

Care to leave a comment?

Worthiness

  • Posted on January 18, 2012 at 8:00 AM

Worthiness is a concept that haunts much of human existence.  In a world of finite resources, we cannot seem to grasp the infinite worth of our fellow human beings.  Being creatures of such a world, even our religions reflect our desire to designate worthy and unworthy human beings.  Science does no better in this regard.  Politics often does worse.

People define worthy attributes in myriad ways.  For some, the predominant consideration is genealogy.  Genealogical worthiness permeates much of the Bible, particularly the Old Testament, and it has hardened the hearts of many Jews, Muslims, and Christians.  There are those who are worthy and there are those who are Gentiles; there are those who are worthy and there are those who are infidels.  (Christians use both terms to describe those who are unworthy, plus they have the legacy of Election—which I do not claim to understand.)

Genealogical worthiness is also present in science, though perhaps it could be better called gene-o-logical, since scientists tend to be less concerned with the specific ancestors from whom you’ve sprung and more concerned with the actual genes you’ve inherited.

Genealogical worthiness also permeates politics.  Both Nationalism (which can have some positive aspects to it) and genocide (which is 100% negative) are products of political ideas of genealogical worthiness.  But there are others.  Eugenics was a strange hybrid of politics and science, and its effects linger in contemporary politics despite the many efforts to destroy this debunked theory.

But genealogical worthiness is far from the only consideration.  After all, nobody chooses their genealogy and many of us are willing to give at least a little consideration to choice.  Those who choose to pursue higher education are often considered “more worthy” than those who don’t—considerations of equal opportunity are often negated in these arguments.  Those who choose to purchase responsibly are often considered “more worthy” than those who don’t—what makes a worthy purchase depends, of course, on the prevailing perspective, from the responsible use of credit to green living and many considerations in between.

And, of course, worthiness is also a matter of ability.  Those who are able are obviously more worthy than those who aren’t—and for many this belief is so obvious, so strongly assumed, that the assumptions it is based on are never even questioned.

The worthiness of people with autism is degraded on all three counts.  Genealogically or gene-o-logically, autistics are inferior.  There’s something wrong with the genes and that makes them at least susceptible to autism.  Shame on them.  They’re not worthy.  But, of course, being autistic—at least, acting autistic is a choice.  Passing—the contemporary equivalent to being cured—is a choice.  It’s a choice to do the work to be able to pass and it’s a choice to do the work to actually pass.  Those who fail to pass have made the wrong choices—opportunity, or lack thereof, to learn effective passing strategies is irrelevant, because if they really wanted to learn, then they would have.  Choosing not to pass makes them unworthy.  Shame on them.  Finally, ability makes them unworthy.  They are not as able as neurologically typical people, and they should be.  They should be able to mingle successfully in a crowded room full of noisy party-goers.  They should be able to sit quietly in a classroom and absorb the teacher’s lectures like a sponge.  They should be able to hold down a job without accommodations—who do they think they are to ask, they’re not even worthy to have a job considering how many able people are out of work.  Shame on them.  Strike one, strike two, strike three, autism is out.

The above paragraph is, of course, an illustrative example.  I believe it happens; I believe people think like that.  But I am not one of them.

Human worth cannot truly and accurately be measured by our genealogy (or gene-o-logy).  Human worth cannot truly and accurately be measured by our choices, at least not without considering our genuine opportunities and our unique circumstances.  (And it shouldn’t be about how much we choose to accomplish in order to “prove” our worth, but whether we choose to hurt others for personal pleasure and gain.)  Human worth most certainly cannot be measured by our abilities.

Hello, I am the mother of three children with autism.  I am worthy to live, to reproduce, and to raise my children.  All four of my children are worthy of living, dreaming, loving, and having opportunities for personal growth and betterment.  Whether you are autistic or not, you are worthy.  Whether you are college educated or not, you are worthy.  Whether you are rich and powerful or not, you are worthy.  Whether you are able to live a normal and independent life or not, you are worthy.

You are of infinite worth beyond human imagination just for being you.  And so is everyone else.

Highlight It

Care to leave a comment?

Joining in Effort

  • Posted on January 9, 2012 at 8:00 AM

I don’t know why, but my browser really hates The Thinking Person’s Guide to Autism.  While I don’t share my browser’s animosity, it does impede my access to the site.  So, instead of trying to comment there, I will respond here to the post Shannon Des Roches Rosa wrote called How Autism Parents Can Listen to Self-Advocates.

First, I agree with the premise.  It’s important for all those invested in the issues of autism (not limited to parents) to listen to self-advocates, even when what self-advocates say is uncomfortable or goes contrary to what we believe—especially then.

It’s important to listen.  It’s important to consider what others are saying and to look for the material content in their words.  But, it’s more than that.

Communication is an imperfect art.  When we speak or write, we think we are sharing ideas, but we’re not.  We are sharing words, looks, tones, behaviors, ect., which convey meaning; that meaning is then translated within the brains of our audience and interpreted.  Only by communicating and re-communicating (involving multiple attempts at listening and speaking/acting) can we determine how effectively we’ve exchanged our ideas.

This, by the way, is true for everyone—even people who are very much alike.  The more two people communicate successfully and create a mutually understood short-hand, the quicker this process becomes.  When you’re communicating with collectives, versus individuals, we still tend to use whatever communication short-cuts we’ve become accustom to, but this short-hand will almost always be interpreted differently by the different members of your audience.  Thus, reliance on communication short-cuts is not effective, with a few specific exceptions.

Furthermore, when you’re communicating with someone new, you have to test each other’s understanding to communicate successfully—no short-hand exists between you.  The greater the differences between the two of you, then there is an even greater possibility for mutually exclusive interpretations in your attempts to communicate.  A common example within our own community is when a parent defines autism as “like my child” within their own mind, and is all too ready to exclude anyone who is not autistic the way their child is autistic.  This difference in definition creates a communication barrier, since most people do not mean “like that person’s child” when they say autism.  On the other hand, too many self-advocates seem to think ally means “people who agree with me” or some equally inappropriate definition.  However, when I think of ally, I think of the way the U.S. and Britain are allies; they don’t always agree and they don’t always work together, but they do have common interests and work together to further those interests—but don’t always do so very well.

Shannon wrote:

“If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates’ spaces, rather than always expecting them to come into ours.”

This is where, essentially, I must disagree.

Both approaches miss the mutual nature of communication.  I agree that it is wrong for parents (or anyone else) to expect autistic self-advocates to come into their “space” in order to communicate.  It’s a habitual expectation (part of the “privilege” thing mentioned in the post), but it’s ineffective—regardless of who the communicators are.  Thus, it is equally wrong, if also habitual, to try to go into the “other’s” space.  Firstly, this transfer of mental space is not really possible—it’s in our imaginations.  I suspect that if we really checked every time we guessed how someone else feels or what they’re thinking about or how they’ll react, internally, to a specific stimulation, then we could blow this whole “theory of mind” b.s. out of the bloody water for good.  Second, our words and expressions are merely tools to facilitate communication.  We have to check our mutual understanding—ensure we’re both using these tools the same way—in order to communicate successfully.

Effective communication is going to happen in a mutual “space,” an in-between that requires us to join our efforts in order to communicate.  In the online dialogue, this is most likely to happen in the comments.  A blog post is for a wider audience; comments are, often, for specific, individual communicators.

There are certain online spaces, specific blogs and forums, which have created, over time, a unique space where dialogue happens on a shared basis.  But, in my experience in the greater autism community, most of these spaces are dysfunctional—preferring a side to a dialogue.

In short, we should listen.  We should ask for clarification and for explanations, even if we’re sure we know what the other person means because we know what we would mean if we said what they said.  We should invest ourselves in creating a mutual “space” where communication can occur, and we should base this shared space on mutual understanding and mutually agreed-upon definitions or meanings.

This, obviously, requires effort from both parties.  If one party—and it doesn’t matter which it is—is talking, expecting to be heard, without making the effort to be understood and to understand in return, then the communication attempt has failed.

The communication attempt has failed.

This does not, however, mean that parents (or other interested parties) should not make accommodations for those with communication disabilities.  The very act of creating a communication “space” is an act of mutual accommodation, and if one participant has communication disabilities than that must be a factor in determining how the accommodations must be made.  But, again, it goes both ways.  Both communicators must recognize that the participants are unique to each other and their intentions and their needs are equally unique.  To communicate successfully, such unique understandings and interpretations must be taken into account.  You can’t come in with all your baggage, knowing what you expect, and projecting your expectations onto the other person.

For communication success, both parties must make a joint effort to understand and to be understood.

This is not common practice.  This is decidedly rare.  We’re all so busy spouting off our opinions, our beliefs and our ideas that we don’t take time to communicate them to others.  But growth comes from communication.  Change comes from communication.  Progress comes from communication.  Unless we take the time to create mutual spaces necessary for successful communication, we will not create the growth, the change, and the progress we need to make this world a better place for ourselves and those who follow.

Highlight It

Care to leave a comment?

Discuss vs. Debate

  • Posted on January 6, 2012 at 8:00 AM

According to Dictionary.com, discussion means:

an act or instance of discussing;  consideration or examination by argument, comment, etc., especially to explore solutions; informal debate.

Whereas, debate means:

1. a discussion, as of a public question in an assembly, involving opposing viewpoints: a debate in the Senate on farm price supports.

2. a formal contest in which the affirmative and negative sides of a proposition are advocated by opposing speakers.

3. deliberation; consideration.

4. Archaic . strife; contention.

In the greater autism community, we need more discussion and less debate.  If all we’re doing is arguing about who’s right and who’s wrong—no matter how respectful and considerate our approach is—we’re not accomplishing much.  If, on the other hand, we’re discussing problems of mutual interest, we just might be able to come up with mutually agreeable solutions.  If we can do that, we can work together to act on those solutions in a public forum.

Consider the political arena for a moment:  Two primary “sides” exist in the political forum, Democrats and Republicans.  When any seat is up for grabs, say the Oval Office, you’ll hear a lot of debate about which side should take the seat.  They don’t do anything.  They don’t decide anything.  It’s all up to the voters.  They just debate to show us our options.

Then, when they finally do get into office, usually both sides are heavily represented in the different elected bodies.  We have the House of Representatives, the Senate, and the President.  Consider our current bodies.  How much do they actually accomplish?  How many problems do they actually solve?  What is the result of all their debating?

My answer is “not much.”  Perhaps you disagree.  If so, keep debating.  If, however, you happen to agree with me, then maybe what we should do is get together and discuss what needs to be accomplished and how we might work together to accomplish it.

Highlight It

Care to leave a comment?

Why It’s Not Okay

  • Posted on January 2, 2012 at 8:00 AM

Sharon of The Tumultuous Truth recently posted about Alison Singer in response to this and this. 

I remember watching “Autism Every Day,” knowing in advance that it would be a problem for me.  I was warned.  But it was worse than I had imagined.  (No, I’m not going to link to it.)

At the time, I was struggling.  Raising three children with autism, even with adequate supports, is difficult.  When there are problems with the supports or the supports are inadequate, it’s worse—a lot worse.  I’m not one to minimize that.  Nor is it wrong to express that.

BUT…and this is a big, huge BUT…

It’s one thing to express frustration, to express our feelings of being overwhelmed, our feelings of betrayal, our feelings of inadequacy and all those negative feelings that go along with them…and it’s a whole different thing to fantasize about killing one’s child.

AND…another big one…

It’s yet another thing to tape record ourselves fantasizing about killing our children for a viewing audience to raise funds for…well, for anything.  I don’t care if you’re raising funds for Murders Anonymous (to my knowledge there is no such organization, but then again society has yet to cease to amaze me), you just don’t do it.  Not if you’re an ethical person, not if you’re a loving parent.

Why not?  Really, if you need an answer…  [grumbling to self]  Because murder is wrong.  Because murdering an innocent child is especially wrong.  Because murdering your own innocent child is even more especially wrong.  Because fantasizing about murdering your child brings you one step closer to actually doing it.  Because publicizing your fantasy is actually advocating that mind-space.  Because advocating that mind-space could lead to other people—people who are mentally ill and not altogether reasonable—thinking that mind-space is safe, justified, and right.

I must admit that I cannot imagine what it would take to fantasize about murdering my children.  I cannot imagine it.  I cannot imagine the mind-space Alison was in when she thought about that.  I cannot imagine the mind-space of the people who’ve followed through with their gruesome fantasies.  I have had some very low points.  I know despair.  I really, really do.  But even at my lowest point I never once fantasized about killing my kids.  I cannot even imagine it.

My advice for people in that mind-space—seriously without any humor or any sarcasm—is this:  GET PSYCHIATRIC HELP NOW!!!  You know that moment that you realized—however it happened, whatever triggered it—that something was wrong (or “wrong”) with your child, that your child’s development was atypical, that you needed help to raise your child.  If you fantasize about murdering your child, then you need to realize that there is something wrong with you and get the help you need.  If you are having such fantasies, you have to realize IT’S NOT ABOUT YOUR CHILD, you have to realize IT’S ABOUT YOU!!!  There is something wrong with you.

Believe me, anything—yes anything—is better than murdering your child.  If you do that, your child’s life is over.  Done.  There’s no coming back.  There’s no recovery.  There’s no hope.  (Yes, I’m a Christian and I believe in the resurrection after death, and YES I’m still saying that, because you have NO RIGHT to send your child to heaven.  God put your child on this earth for a purpose and YOU HAVE NO RIGHT to thwart that purpose by murdering your child, whatever your reasons may be.)

Consider the possibilities:  If you have to put your child in a horrible school (Alison’s trigger), you can do something.  You can advocate for changing the school, you make money to send the child to a private school, you can learn how to homeschool your child, you can move to another state or another country, you can DO something.  If you kill your child, it’s OVER.  You can’t do anything to help your child.

If you’re not getting the services and support you need, you can do something.  You can advocate for change, you can ask family, friends, neighbors, hell even strangers for help.  You can knock on the door of every agency in your county until you get a lead.  You can apply for grants.  You can build your own support network.  You can DO something.  If you kill your child, it’s OVER.  You can’t do anything to help your child.

If you really can’t handle your child (or feed your child), then give your child up.  Put your child in foster care.  As horrible as foster care can be, it’s better than being DEAD.  Even if the child will end up in an institution, being in an institution is better than being DEAD.  Your child can recover from an institution.  There are people who are working to change the system and help children just like yours.  You can take your child out of foster care when you’re better.  You can DO something.  There’s a course of action, a way to help.  If you kill your child, it’s OVER.  There’s no next step.  You can’t help your child any more, nor can anyone else.

If you are fantasizing about murdering your child, then I see two possibilities:  Either you’re experiencing some kind of mental health issue or you are evil.  Chances are it’s the first one.

Despair is not an excuse for fantasizing about murdering your child.  Despair is certainly not an excuse for doing so on an internationally distributed video that makes it seem like it’s okay to murder autistic children.

Mental illness is not an excuse for fantasizing about murdering your child.  Mental illness is certainly not an excuse for doing so on an internationally distributed video that makes it seem like it’s okay to murder autistic children.

There is no excuse for that kind of behavior.  There’s no justification.  There’s no reasonable explanation.  And, by God, I hope that Alison has apologized to her daughter, because that’s what loving parents do when they’ve hurt their children.  I also hope she finds it in herself to apologize to people with autism and to the world at large.

Now, back to Sharon’s post, I won’t write Alison off.  I won’t write her Autism Science Foundation off.  There is the possibility of redemption.  There is the possibility of forgiveness.  There is still the possibility to do some great good for people with autism.

But I won’t excuse her behavior either.  What she did was wrong.  There is no justification for it.  There are no acceptable excuses.  Her behavior was WRONG!!!  Her words hurt people—real people with real feelings.  She can’t explain it away and expect the people she hurt to just let it go.  I can’t just let it go.  I won’t.  Not until she admits that what she did was wrong and apologizes.  Because that’s what ethical, responsible people do.

Highlight It

2 Comments on Why It’s Not Okay

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.*

Highlight It

4 Comments on Executive Functioning in Low-Functioning Autism

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?

Highlight It

1 Comment

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.

Highlight It

3 Comments on May I Have Your Attention, Please?

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.

Highlight It

2 Comments on My Little Cheesehead is Growing Up