Why Autistic Individuals Want Understanding Past “Behaviors” — THINKING PERSON’S GUIDE TO AUTISM
I wish we framed autism around the impact on adaptive skills and activities, instead of framing it around behaviors.
I have a lot of reasons for this. One is that “behavior support needs” tends to invite behavior management strategies that are based on external/observable behavior, and focus on the quality of life of the people around the autistic person, while “adaptive support needs” invites more holistic strategies focusing on access and well-being for the autistic person.
Adaptive skills and activities are really everything we execute in our day to day life, from activities of daily living (ADLs) like eating and hygiene, to ADLs like paying bills, grocery shopping, or participating in a group celebration. They can include receiving healthcare, school or work activities, communication and relationship activities, and day to day administrative tasks.
If it is true that autism is a pervasive developmental condition—that is, it impacts all areas of our development—and that the impact is variable from person to person (true of pretty much every disability and medical condition), we can accept that different areas of adaptive development and execution will be impacted for different autistic people. That sounds technical, but what it looks like on the ground can be…weird. By which I actually mean unexpected and misunderstood.
Let me give an example: This morning I noticed that we have a number of bananas in our kitchen that are getting overripe. When this happens, I like to peel them, break or cut them into chunks, put them in a zip-top bag, and freeze them so they can be used in baking or smoothies later. If the bananas are going to make it from the counter to the bag in the freezer, these are the things I need to be able to do:
- Notice the over ripe bananas
- Know what I want to do with them
- Remember the bananas and my plan after I leave the room
- Identify a time within a day or two to carry out my banana plan
- Initiate the plan at the identified time
- Peel the bananas
- Break or cut them into chunks
- Get the already-in-use, partially full bag from the freezer
- Open the bag, put the banana chunks into the bag, and reseal it
- Place the bag back into the freezer
- Dispose of the peels
If I can’t do every single one of those things, I will not be able to accomplish this process. It will either never be started, or it will break down on the step I can’t execute and remain unfinished.
Which step can’t I execute? Get the already-in-use, partially full bag from the freezer.
Here’s why: I live with my family. Multiple people access the freezer each day. Things get moved around. New items get added and old ones are consumed. In short, it’s a constantly changing landscape.
It is also cold. That’s a lot of sensory input. There are also objects of different textures and weights. That’s also a lot of sensory input. I am very sensitive to items that are stacked or piled in ways that might cause them to be unpredictable when interacted with (digging through a basket of clean laundry to find an item is an absolute nightmare for me largely because I can‘t predict the amount of resistance I might experience from the fabric during the process).
I also feel the weight of a time limit, because the freezer cannot be open indefinitely if it has to maintain its temperature.
If I cannot get someone else to find the partially full bag of bananas in the freezer, I will not be able to do this task. Full stop. Even if I can do all the other steps. The adaptive skill of retrieving an item from my freezer—and really, the adaptive skills of navigating an unpredictable situation, managing a motor plan amidst complex sensory input, and completing time-bound tasks—are impacted by autism.
There are a number of folks who would say that if I can understand about freezing bananas, and if I can plan and initiate that task, and if I can peel them and cut them and put them in the bag, and if I can write a facebook post about all of this, then I should be able to get the bag out of the freezer.
But, at least as I experience the world, none of the other steps require interfacing with unpredictability, sensory-motor planning, or being under pressure of time at a level that exceeds my ability.
I don’t have a behavior problem. I have a gap in my adaptive ability. I don’t need habilitation training to learn to get the bag out of the freezer myself—my disability is not going to make that reliably possible. I need someone to help me out by grabbing it for me, or I need a different solution (personal freezer only I interact with so I can keep it predictably organized? A place in the shared freezer where bananas always go and are easy to grab and everyone else who uses the freezer leaves them there? A ”find my bananas” device that beeps and lights up when I press a button mounted to the freezer? Go wild; possibilities for access are endless.)
That’s a way autism impacts my adaptive abilities. For another person, it might be a different step, or multiple steps. Autism is dynamic, too, so folks might be able to do some steps one day and not on another day. Some people might struggle more with the noticing, planning, remembering, and/or initiating parts. Some might struggle with physical parts like peeling, cutting, opening the bag. Some might struggle with the tactile experience of the bananas. Some might enjoy drinking the bananas blended in the smoothie but not even be able to think about the texture of overripe bananas, much less look at or touch them, without experiencing sensory repulsion and overwhelm.
In any case, these adaptive impacts of autism are real, and it can be important for both self-understanding and service and support planning to understand the underlying areas of impact (difficulty navigating an unpredictable situation) instead of just the “behavior” (did not follow through with completion of banana freezing task).
Image by Ryan McGuire from Pixabay
