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Accessories to Living

  • Posted on January 20, 2012 at 8:00 AM

My boys don’t do very well managing the accessories of their lives.  I’m not talking matching socks and shirts or wearing dashing little outfit accessories that complete their look.  I’m talking about accessories that add value to life, but also add responsibility and change.

Willy recently got glasses to help him see.  Just in case we needed proof—aside from not being able to see the board and headache complaints, and the optometrist’s expertise—Willy’s bowling game jumped by 30 – 50 points his first time back with glasses.  That’s three to five whole sets of pins.  So, his glasses have a pretty dramatic impact on the quality of his vision.

The problem is that Willy often forgets to put his glasses on.  He claims he can’t tell the difference between when he’s wearing his glasses and when he’s not, so he tends to forget them.  Perhaps it’s that my eye sight has been so much worse than his for so long, but I can’t imagine not being able to tell I’m not wearing my glasses.  For one, my skin is so sensitive that I can’t help but know.  I can feel them.  I feel the pressure behind my ears and on the sides of my nose.  Of course, I can’t read very well without my glasses, because the letters get all blurry.  As you might imagine, I spend a lot of time reading, so that’s a big hint.  I can’t imagine not knowing whether my glasses are there, so wrapping my head around his problem of not remembering to put his glasses on because he can’t tell the difference—I’m not doing so well with that.  My most successful solution thus far is to put a sign asking him if he remembered his glasses over his shoes (which I set out each night before school).  He goes to put his shoes on, and he sees the sign and puts his glasses on first.  This keeps both of us from forgetting in the early morning busyness.

Life is full of accessories.  As the driver in the family, I usually have to remember my keys whenever I leave—and remember them again whenever I leave the car.  I’ve had to break into my own house, with three squalling toddlers and an infant in tow—because I left my keys in the house, so I couldn’t unlock my car and had already locked the house.  Of course, the times when this happened I was on my way to pick up Mark, so it’s not like he could unlock the door for me.  So, remembering is a necessity, so I have developed habits to help me—usually involving leaving them in my purse except when in use and checking to make sure they’re where I left them before leaving the house/car. 

So, how do you manage life’s accessories?  What tricks have you learned to help yourself or your children?

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.*

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?