fautigue

Word coinage here! Today I would like to introduce the world to FAUTIGUE, pronounced “faw-TEEG.”

Google away. As you’ll see, “fautigue” pretty much only exists on Web 1.o discussion boards where people were misspelling “fatigue.” Perhaps they thought they were being more British. Bad news for them: they weren’t. Some clothing brand you’ve never heard of, Wildfox, sells something called a Tres Fautigue; are they suggesting that it’s like buying “faux” fatigues? I doubt the name was well thought out.

There’s nothing “faux” about my new portmanteau. FAUTIGUE is basically fatigue with autism, although that feels a little too simple for such an excellent combination word. I’d like to plant a flag here and say that a secondary definition of FAUTIGUE might just be “fatigue with autism,” and perhaps a tertiary definition might be the exhaustion that an autistic person feels in repeated, unsuccessful attempts at communication. Nonetheless, I’d like the term’s primary definition to be a sort of tiredness and frustration with teaching an autistic person something again and again and again…only to see that the autistic person doesn’t appear to retain it.

Fautigue (faw-teeg, not foh-teeg) is a big part of the lives of wifey and me. You might think that autism literature would have warned us about it with some kind of language, but we found that it barely did. Specifically, I believe that when you teach someone something a given amount of times, and they still don’t get it, you get frustrated. You may not know this about yourself, but when you repeatedly explain something or demonstrate something to someone, you have a point where you expect them to get it.

Back when I used to play a lot of Pictionary, we called this the “drop the pencil” moment. This was named after our friend Lucas, who was 20 years ahead of this whole “mic drop” phenomenon. Let’s say the word was tree, and Lucas drew a nice tree trunk with a couple of spare branches and a lovely fluffy cloud on top. His partners are like “bush!” “shrub!” “cedar!” “oak!” “burning bush!” – Lucas theatrically drops the pencil. His point: there is no goddamn way he can make this any clearer. His point: his partners should know this by now.

Now, not everyone drops the pencil at the same speed. But the language of autism therapy suggests that good therapists will never drop the pencil, ever. Read the websites, and you might think that fautigue doesn’t happen, or if it does, they push through it. I’m here to tell you that’s a lie. If you say or do the same thing as instruction, say, 100 times (varies for everyone), you reach a breaking point, whether you admit it publicly or not. You want to drop that pencil. Dar’s life is and will be a series of taking people to their breaking points.

We have been through many therapists and teachers and helpers – a solid 20 in the 3 years since Dar’s diagnosis. They always start the same way – “uh huh, okay, yes, I see, okay, great, so that’s what he knows, great, that’s perfect, we’ll work from what he’s already doing, I see a guy here who can be taught, and I can help him, and we’ll make it happen!” Within a year or so, this becomes “I don’t think I can do anything else for him.” 20 times. In three years. I blame fautigue.

Now, perhaps the onset of fautigue is my fault – maybe I’m not doing enough to support their efforts. Perhaps these people are sort of short-termers anyway – perhaps they rarely help “clients” (or students, or patients, whatever) longer than they helped Dar. But I don’t believe that. Dar frustrates people. People don’t like to be frustrated. I believe that if they get a kid who makes steadier progress, and more importantly engages with them, then they do far more to maintain the relationship. I believe that whatever they may say publicly, when they try their best and don’t see expected progress, they detach, emotionally at first, and then professionally whenever they feel they can without losing face.

They have that option. His parents, us, do not. It’s also true with this blog; readership is down. (Could be my fault too!) Perhaps the drudgery of work was different in the world Herman Melville described in “Bartleby the Scrivener” – heck, perhaps it was different in the world Billy Wilder described in The Apartment. But this is the 21st century, where no one expects to put in Laverne-and-Shirley-like hours at a job they don’t like. These days, if it doesn’t suit your lifestyle, it doesn’t suit your life. These days, if you’ve decided to make the world a better place by helping kids with autism, and six months later, some aspect of that isn’t working for you, you just cut out that aspect. I believe that aspect can be, has been, my son. And I think that’s because of fautigue.

I would like to hasten to add that fautigue has not overwhelmed ALL of Dar’s therapists. We love his current home therapist and are frankly amazed at her stamina and tenacity. His current 1-on-1 aide at school doesn’t yet show signs of combat fautigue, for which we are very thankful.

Studies show that one of the first ways to help a problem is to put a name to the problem. Names help to contain things so that they don’t seem like metastasizing badness. So help me save this name from clothing stores and people’s old typos. Tell sufferers of fautigue – very much including therapists – that they’re not alone. Yes, I’m serious.

Now stop googling and start re-tweeting. #fautigue

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