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.*