You can’t know you’re missing something if you can’t see it.

April 14, 2016 10:40 AM

What It’s Like to ‘Wake Up’ From Autism After Magnetic Stimulation (NYMag)

John Elder Robison, who describes his experience with transcranial magnetic stimulation, is the brother of Augusten Burroughs, author of Running With Scissors (previously)

posted by Clinging to the Wreckage (20 comments total)

My son is 9 and is diagnosed with high function autism, and John Elder Robinson's story keeps sticking out to me. If such treatment is available at a younger age, would the "awakening" be less jarring? but I also don't feel really that my kid needs "fixed", despite how frustrating getting him to relate to other people can often be.
posted by jrishel at 11:48 AM on April 14, 2016 [2 favorites]

Its called out in the article and likely expected by all but its like the title should start with "RESULTS MAY VARY:"
posted by Ogre Lawless at 11:51 AM on April 14, 2016 [2 favorites]

Woah, this guy is Augusten Burroghs' brother? The Running With Scissors guy??
posted by capnsue at 11:57 AM on April 14, 2016

This is interesting, and I hope that research into this continues.

I'm absolutely sensitive to parents and autistic adults who don't see autism as something to be "fixed." And obviously we can't go around enforcing medical procedures on people willy-nilly. But if technology like this can someday help avoid more stories like what happened to Sky Walker's mother, it needs to be pursued so that it can be available when needed.
posted by sparklemotion at 12:02 PM on April 14, 2016 [4 favorites]

More than anything, this reminds me that when we say "autism," we're probably talking about a loose collection of disabilities and differences that all look kind of similar to the outside observer. l've been finding Robison's ongoing reportage of his experiences with TMS deeply alienating, not only because of the miracle-cure aspect but because I don't recognize his experience of autism at all. I've never felt robotic or like I had access to limited emotional experience; instead, I relate to the "intense world" theories, because it's more like a cacophony of information in my mind and body all the time, too much for me to perform expected neurotypical behaviors. That way he talks about experiencing music after TMS? That's how I feel; I just can't turn it off or redirect it on command. This isn't to criticize his experiences as invalid or unhopeful (for him); it's to say autism is more complex and his experiences likely less typical than the reporting about this would indicate.
posted by thetortoise at 12:42 PM on April 14, 2016 [36 favorites]

It should be noted that this guy wrote his own book about his life, Look Me in the Eye: My Life with Asperger's. He's had a fascinating life.
posted by w0mbat at 12:47 PM on April 14, 2016 [3 favorites]

I'm on the spectrum. The things he is saying resonate - I very much agree with his point that people on the spectrum have LOTS of emotions. And like him I would very much have expected the same thing he did before treatment. What he describes makes me rethink a lot. I've never seen my autism as a shield before. I get compliments every now and then about how well I can listen and reflect for people who need a shoulder and an ear, and so far I've always figured that's because I can only do that when I spend a lot of energy on it, being aware of every thing I say or hear, instead of things just happen naturally as I always thought non-autistic people managed to do things. And having a shoulder or listening ear with somebody that pays intense attention to what you say naturally makes that listening ear so much more valuable just by that alone.

I guess I'll just go on enjoying the advantages my condition give me, and continue working hard on all that don't come naturally to me...
posted by DreamerFi at 12:51 PM on April 14, 2016 [3 favorites]

Reading this I could relate to most of what he was saying. I have no idea if I'm on the spectrum outside of a therapist a while back saying "Have you ever heard of Asperger's?" and using it to explain why she and I were not on the same page. But I think we just were not a fit. People often tell me I'm 'dead inside' though and it's very hard to communicate that I'm only 'dead outside' and this article did that very well I thought.

I hadn't heard of John Elder Robison before this article so I didn't know about his book, but that looks great and I'm going to read it. Thanks for the link w0mbat.
posted by Clinging to the Wreckage at 1:16 PM on April 14, 2016 [2 favorites]

I'd seen a related story by Robison in the New York Times a few weeks back. I think the format of this story changes the emphasis a lot, but one thing that struck me about the previous article was how, prior to the TMS treatment, Robison seemed not to have needed to perform emotional labor -- to the point where (as with his second wife's depression) he didn't even know what emotional labor *was*.

There's been several conversations thus far about how the experiences of those with ASD vary with gender. Unlike a lot of (anecdotal, mostly) case studies I've seen of women with ASD, Robison doesn't seem to have tried to learn facial expressions or body language prior to trying TMS. I wonder if many women with ASD would approach this with far less ambivalence. I know I would -- the ability to do unconsciously and instantly what I'm currently doing painstakingly and consciously would be amazing.
posted by steady-state strawberry at 1:43 PM on April 14, 2016 [5 favorites]

It seems to me so bizarre and unethical to have offered him that treatment without also offering him the opportunity for therapy along with it. How could it be successful without violently disrupting his life, at least emotionallY?
posted by praemunire at 2:49 PM on April 14, 2016 [2 favorites]

Robison doesn't seem to have tried to learn facial expressions or body language prior to trying TMS.

From my read of it, before he got a diagnosis, he didn't realize that there were facial expressions or body language to learn at all. After the diagnosis, he seems to have put in the effort:

But I think diagnosis certainly helped me. I immediately started reading and I taught myself how to act in ways that were more expected and that had a powerful, positive influence on my life. Simple things, like how close do you stand to a person? How do you show someone that you are paying attention when you have a conversation? Should you look at people? Do you look at their eyes or do you look at their boots? I learned what was expected and, to the extent I could, I taught myself how to behave in more expected ways.

Maybe if he was a woman, he might have been forced to learn about body language and facial expressions without the diagnosis because a woman or girl who doesn't perform the "right" emotional reactions is more harshly judged.
posted by sparklemotion at 2:52 PM on April 14, 2016 [2 favorites]

After the diagnosis, he seems to have put in the effort:

Yes and no. He put in the effort to act appropriately. (This is commendable, I suppose, though it shouldn't be -- again, social cues work because most people obey them.) He didn't put in the effort to *read* people, because he didn't seem to understand that there was anything to learn.
posted by steady-state strawberry at 3:18 PM on April 14, 2016

He didn't put in the effort to *read* people, because he didn't seem to understand that there was anything to learn.

Yes, because he had a neurodevelopmental disorder that prevented that understanding. In his words: "You can’t know you’re missing something if you can’t see it."

He says that his learning and efforts post-diagnosis and pre-TMS were limited by "the extent that [he] could." So I don't really see that as evidence that he didn't "try" or that if he had tried hard enough, it might have clicked for him.
posted by sparklemotion at 3:39 PM on April 14, 2016 [3 favorites]

Amazing as the NYT piece was, this article is full of even more wonderful things:

And not only was the world spinning, I would close my eyes and I would have these really vivid, half-awake, half-asleep dreams that were a collage of things from the past and things that had just happened that day and they were just so real. The experience was so unsettling that I woke up and wrote a 1,500-word missive to the scientists describing what had happened. Then, finally, I was able to fall asleep.

I have something like this on a sporadic to semi-regular basis, and I think of it as 'reaping the whirlwind' because at its peak it's as if a dust devil loaded with memories picked up from all the decades of my life engulfs me when I close my eyes; sometimes I'll have an insight about a problem I'm working on, or a beautiful landscape that never existed will precipitate out of it, or I'll be sandblasted raw by visions of the embarrassing and truly awful things I've done and it feels malignant -- and it's always preceded by a surging and twisting motion in the darkness behind my eyelids. But the worst thing is, on occasion it wouldn't stop immediately when I opened my eyes and carried on like a faded, transparent and mostly muted overlay on the waking world I ordinarily see. That's never lasted more than half an hour so far, but it's always been scary.
posted by jamjam at 4:01 PM on April 14, 2016 [6 favorites]

The reading of "he doesn't understand emotional labor" seems incredibly uncharitable given that, A: emotional labor as a general knowledge concept is fairly, new and that B: he has a literal neurological condition that affects how he reads and interprets emotions.

I get that emotional effort is a real thing, but judging a person with undiagnosed ASD for not getting it seems to be mean spirited.
posted by Ferreous at 6:43 PM on April 14, 2016 [8 favorites]

judging a person with undiagnosed ASD for not getting it seems to be mean spirited.

In case I haven't made it clear, I have ASD. I'm also female.

"Mean spirited" isn't the term I'd use for judging a man who, once he started feeling empathy for people, abandoned his wife because her depression was dragging him down.
posted by steady-state strawberry at 4:32 AM on April 15, 2016 [2 favorites]

"Unthinking" is the term I'd use for judging him for that. Even fully-functioning people can't always be in a relationship with an extremely depressed person, and that doesn't make them bad in any way.
posted by jjwiseman at 11:43 AM on April 15, 2016 [1 favorite]

This American Life did an episode on this, too. I think this is it, and it was really good.
posted by Snowishberlin at 1:41 PM on April 15, 2016

"Unthinking" is the term I'd use for judging him for that. Even fully-functioning people can't always be in a relationship with an extremely depressed person, and that doesn't make them bad in any way.

Not having ASD, but having done the dance with depression, and given the caveat that I am not qualified to diagnosis anyone with anything, especially over the internet, I'm willing to bet that Robison is also depressed, based on his descriptions of his post TMS life.

It seems like he can only perceive negative emotions now -- or, at least, he is so sensitive to them that they drown out the positive ones. I mean, he says that now he can "sense all [of people's] emotions," but he only ever describes perceiving bad ones. Having your brain point out the negative aspects of everything around you is a pretty standard trick that depression plays on you. And even if depression isn't in itself the cause of him seeing so much negativity, just having to deal with all-the-negatives-none-of-the-positives could certainly be depressing.

And being depressed can make you do and say things that make you hard to love. And if they were both depressed in a marriage the same time? Whoo boy. So, having not lived his life nor met/heard from second wife, I'm going to say that maybe I can understand him not being able to deal with her depression to the point where they could not stay married.

I think that steady-state strawberry's original point still stands. There's a good chance that because of his male privilege, he was able to get away with not being able to function on an emotional level to an extent that women with ASD are not. Which, I'm not gonna lie, seems like a raw deal for women with ASD.
posted by sparklemotion at 2:52 PM on April 15, 2016

His latest article says how the treatment cost him his marriage.
posted by w0mbat at 2:12 PM on May 3, 2016