spoon theory applied to sensory integration

Both of my kids, independently of each other, sent me this link. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ It had been sent to Laura by a friend of hers, and to Darren by a mutual acquaintance who is a life coach, and who also has Asperger’s Syndrome. I assume it’s also going around on social media, although that’s not where my kids got it. It was sent to them for a reason of course – it’s relevant to our family’s health issues.

It’s about the constant strategizing required for those who have a chronic condition but still want to live a “normal” life.  Because energy is limited, it has to be spent wisely. This author was in a restaurant when she was explaining this concept to her friend, so she used a bundle of spoons to illustrate the limited amount of energy she had every day. Each activity takes away spoons, so she has to constantly strategize and limit herself so as to not to run out of spoons before the day ends. Now her ideas are called “spoon theory,” where spoons are a metaphor for how much we can do in a day before we run out of ability.

The author has lupus, and I’m very lucky that I don’t have that. I’m lucky I usually have plenty of energy. But in my family we have two issues that do cost “spoons” to deal with in life. We have Asperger’s syndrome, which is inherently very stressful and makes life quite challenging, and we also have a sensory integration issues, which is common with Asperger’s Syndrome. (https://en.wikipedia.org/wiki/Sensory_processing_disorder)

Sensory processing is complicated, and not well understood. I have a mild version of two common forms of it: sensory over-responsivity, and sensori-motor discrimination issues. These are both very common in Aspgerger’s syndrome.

“Different people experience a wide range of difficulties when processing input coming from a variety of senses, particularly tactile (e.g., finding fabrics itchy and hard to wear while others do not), vestibular (e.g., experiencing motion sickness while riding a car) and proprioceptive (having difficulty grading the force to hold a pen in order to write).” (Wikipedia)

What happens is my brain doesn’t integrate sensory input very well. So normal amounts of sensory input are tiring for me, and too much for too long can be a miserable experience for me. That’s over-responsivity.

The sensor-motor and discrimination part of the issue relates to how my brain understands the sensory input about the attributes of the physical world around me. I don’t do a very good job with automatically gauging physical characteristics like an object’s location, size, weight, distance, direction, and the effects of friction and gravity.  This means I’m clumsy and it means it takes a lot of care (and is tiring & frustrating) for me to do very much manipulating physical objects.

For example, I recently was handed a clay bowl and it was unexpectedly heavy and my arm swung downward and I nearly dropped it. That can happen to anyone, but it happens all the time to me. This means I have to be extra careful to not drop things, spill things, or even fall over. This “being extra careful” all the time can be very tiring.

It’s also embarrassing because it can look like I’m drunk or careless or angry when I’m not. (I once accidentally fell on my puppy while disciplining her for peeing on the floor, and my family has still not forgiven me for dog abuse.) I also don’t allow the dogs in the kitchen when I’m cooking because I fall or drop things too easily. I also frequently run into corners of walls! And it’s tiring for me to do simple household tasks (now you’re thinking I’m just trying to get out of doing the dishes, LOL!) But to be sure, packing, unpacking, and moving boxes is very challenging for me, as are simple fix-it projects around the house.

I enjoy hiking because it’s physically simple, with the primary challenge being uneven terrain. The pace is slow, and there’s not much else going on, so I can process enough information fast enough to not trip very often. But skiing? Nope. Ha, ha, no way.

So back to the spoon analogy – that’s my limited spoons – how much sensory input I can take in each day, and how much physical manipulation of the world can I perform each day. I have to “spend” that wisely.

One of my favorite things to do in the world is sit outside at a cafe in the sunshine, and chat with a friend while the world goes by on the nearby sidewalk. But there’s a lot of sensory input in that situation – colors, smells, the breeze moving my hair into my face, surrounding noise, as well as chatting with my friend. That means that if I’m going to spend a 2-hour lunch with a friend, as wonderful as that is, that takes a bunch of “spoons,” and I’m going to have to somehow limit what else I do that day that requires spoons.

Or if I’m going to be in a moving vehicle, or subject to loud noises, groups of people, confusion, heat, cold, whatever, I need to understand that is going to limit my ability for the rest of the day to intake any more input.

And I can’t just tough it out and be stoic and push through, because I can’t force my brain to do something it can’t do, any more than someone with a different kind of illness can force their bodies to do something they can’t do. When you’re out of spoons, you’re dead in the water, and it doesn’t matter if you want to keep going – you can’t. So it’s a constant strategizing exercise – how much can I get away with?

Whenever someone’s limitations are unusual, it can be hard to strategize, because our culture isn’t set up for anything unusual. People hear about my migraines and think I “should do less” or work less hard. They also think I should avoid stress – and that’s true, but only in the sense of avoiding sensory input. What stresses me is not going to stress others. So when people say I should work less hard or cut down on stress, what do they actually mean?

That’s the total irony – I actually have more stress around things that are traditionally thought of as recreation and stress reducing – than I do with my job. For asperger children, the hardest part of the day is recess. For me, the hardest parts of my life are the things people typically do for fun. I don’t do well in a moving vehicle. Or a restaurant. Or watching the TV. Or even chatting for too long with a beloved friend.

Put me in a “field trip” or “outing” type of situation and it’s going to be stressful. It’s hard to be in a car all day, or on a plane very long. I cannot be talked at continually, I cannot be in stores or groups of people for very long. I haven’t been in a mall in years. I can’t watch movies in a theater at all, and even a movie at home takes a ton of spoons. I love music concerts, but those also take lots of spoons, so I have to strategize about how to minimize the spoon cost of concerts.

 

On the other hand, I’m fine with a full work load. I don’t mind houses and clients and projects and jobs. I can sit at a computer and plan web application upgrades on spreadsheets for 9 hours straight and I’m fine. I can work all day. I can write all day. I can think all day. I do very well in “boring” jobs that require analysis, accuracy and concentration.

I also do well with my clients because it’s one-on-one, over the phone, and there’s not a lot of sensory input. But even so, I can’t do more than 2 hours coaching at a time, or about 4 sessions a day. Which is why it makes sense for me to also have my other job, my sit-in-front-of-a-computer-and-quietly-think job, because I can’t coach all day long.

 

I’m lucky that I like to work, because our society is set up to reward work; both with pay and with social appreciation. I feel successful at work, even when I often feel like I’m failing a little bit in the home environment – particularly when I’m around my family.