This article in New York magazine, Are You On It? From Asperger’s to “Asperger’s,” How the Spectrum Became Quite So All-Inclusive,” by Benjamin Wallace infuriated me one way at the beginning and left me even more infuriated another way at the end.
I’m not mad at Wallace. The article itself is pretty good. But Wallace starts out looking at how trendy it’s become to use the word Asperger’s to describe all sorts of obnoxious behaviors, either to excuse them or to pathologize them. This is happening because there’s a general conception that Asperger’s is basically a form of clinical nerdiness complicated by reflexive jerkiness. Long-time readers know why that idea makes my blood boil.
What most people seem to know about Asperger’s, vaguely or explicitly, is that kids with Asperger’s lack empathy. It’s in the diagnosis. Which makes them sound like little sociopaths, another trendy word used indiscriminately and unmoored from its psychiatric definition---liberals in the blogosphere like to use it as a synonym for Evil Villain.
But Asperger’s kids don’t lack empathy, except for those who are in fact also sociopaths---people with Asperger’s aren’t defined by their Asperger’s traits. They have those traits along with lots of other personality traits. You haven’t said anything more insightful or really descriptive about a person by noting he has Asperger’s than you have by noting he is short or likes buttermilk pancakes. People with Asperger’s don’t lack empathy. They lack the ability to detect what they should empathize with. Blind people know not to walk out into traffic. They can’t see the stoplights. A person with Asperger’s knows there are things you shouldn’t say in polite conversation but he can’t see the traffic lights.
The person with Asperger’s I know best has mass quantities of empathy. And sympathy. And all sorts of fellow feeling. He has a big heart and wants to do right by everybody and he usually does. But he has had to learn a lot of things over time that most of us picked up quickly and easily when we were very young.
There’s a new novel for young adults I’m looking forward to reading. Colin Fischer
Mostly with ours son it’s been a problem of his seeing too much and not being able to sort it out in time.
That’s the way it is with many of those with Asperger’s. They see too much and don’t sort it out until it’s too late to not only stop themselves from saying the wrong thing but move themselves to say the right thing.
On TV and in the movies a character with Asperger’s will invariably respond to something another character has done or said by saying or doing the absolutely inappropriate thing. In real life, Aspies are just as likely---more likely---to respond by not responding. They’ll give you a baffled stare or continue on as if you haven’t said or done what you said or did.
This is because they’ve either failed to see the flashing stop light of someone’s facial expression or body language and so they plunge on ahead into the path of oncoming emotional traffic or they know they’ve missed something or fear they’ve missed something and for safety’s sake cling to the curb.
And knowing they’ve likely missed a signal, they will often try to guess at what that signal might have been and then guess at the appropriate response and they guess wrong often enough to get a reputation for guessing wrong. People start ignoring when they’ve guessed right and focusing on all their wrong and goofy guesses. They expect the wrong and the goofy to the point of hearing everything an Aspie says as wrong and goofy, even when what they’ve said is actually right and sensible.
From this many Aspies learn that the best thing to say is nothing or as little as possible. Someone with Asperger’s is as likely to talk too little as talk too much. The best defense is a canned response that sounds polite but gives nothing away.
Typically Aspies aren’t mean or insulting or rude or obnoxious or goofy. They are boring. They rely on stock phrases, generic conversation starters, clichés, and obvious and shallow small talk. Fantastic and wonderful and beautiful things may be going on in their heads---those who are inclined to have fantastic and wonderful and beautiful things going on in their heads. Some are. Others aren’t and are just as dull-minded as neurotypical bores you’re forced to sit next to on long airplane flights.---they may be the most interesting people in the world, but they’ve taught themselves not to let it show because they’ve learned that they’re somehow annoying when they do.
Another thing about Asperger’s Syndrome. It’s a syndrome. Aspies share certain traits but not every Aspie has all the traits or exhibits them in the same combinations or to the same degree.
And they tend to have other disabilities to deal with as well. Slow gross and small motor skill development. Speech impediments. ADD. Learning disabilities. The idea that all Aspies are geniuses and savants is another TV trope and not the way it is in real life. Our son Ken has a serious problem with numbers. He has a sensory integration dysfunction that may be a trait of his Asperger’s or may be something on top of it. Fantastic and wonderful and beautiful things are going on inside his head, but because he is mildly ADD he has trouble organizing his thoughts and will often let them out in whatever jumbled order they’ve occurred to him. He has difficulty following instructions because his mind jumps ahead and, instead of taking things step by step, he’ll try to see his way to the end of a task all at one go. This leads him quickly into running into mental walls and leaves him frustrated, anxious, angry at himself, and feeling dumb.
That’s him. It’s not every Aspie. But you can see how a kid who has trouble making sense of the world on the whole would be excited to discover some little part of it that he can make sense of and then keep coming back there, again and again and again, for comfort and a feeling of competence, and hence the obsessions with topics no one else seems to care about and the endless listmaking. This doesn’t mean every stamp collector has Asperger’s.
You can also see how a child who has trouble reading the adult world and following the maturation of his peers might have emotional developmental issues. But some children with Asperger’s have emotional developmental issues in addition to all their other problems and issues and, as we call them around here, blocks.
Now, and this is key. A person can have all those problems and issues and blocks, can have trouble reading faces, be dyslexic or innumerate, be emotionally troubled or immature or slow to mature, he can even be obsessed with recondite subjects and be a maker of lists, he can talk too much or too little, say all the “wrong” things, be a jerk, be a pest, be a goof, be a genius, be peculiar in a dozen ways and still not be a person with Asperger’s. He might just be himself.
Which, it turns out, is what Apsies are too, themselves.
So you can imagine why it steams me when people use the word carelessly to explain or explain away someone’s failure to watch his mouth, his inconsideration, his chronic rudeness, his self-absorption, his general obnoxiousness.
It’s why I was glad to read in Wallace’s article that the TV show House explicitly and emphatically rejected that TV trope:
“You’re not autistic,” a doctor tells Hugh Laurie’s abrasive character in an episode of House. “You don’t even have Asperger’s. You wish you did; it would exempt you from the rules, give you freedom, absolve you of responsibility, let you date 17-year-olds. But, most important, it would mean that you’re not just a jerk.”
Ken Mannion is in his second year of college. He’s doing pretty well. Taking it slow but taking it very seriously. I don’t remember if I mentioned it here but, despite his math problems, he managed to pass his math Regents exam last year and earn his New York State High School Regents diploma, and this past spring he passed his school’s required math class. He was able to do this thanks to the help he started receiving in fifth grade and that was thanks to his being diagnosed as having Asperger’s.
(Updated with the latest news from school: He got a 98.9 on his second biology exam. He got an 89 on the first one. Next up is the final.)
Which brings me to the other way Wallace’s article infuriated me. Towards the end he reports that for no good reason Wallace seems to have discovered the American Psychological Association is planning to do away with Asperger’s as a condition apart from autism.
Next May, the fifth edition of the DSM [Diagnostic and Statistical Manual of Mental Disorders]is to be published, and the APA has proposed to eliminate the Asperger’s diagnosis, folding it, as well as PDD-NOS, into the broader new all-purpose bucket of autism spectrum disorder. The thinking is that Asperger’s isn’t scientifically distinguishable from autism, and that a single diagnosis may help to combat the epidemic that is more diagnostic than real. But the debate has been fractious. Fred Volkmar, who’d headed the committee for DSM-IV, quit the DSM-5 committee, and has been vocal about the likelihood that the redrawn map of who’s on the spectrum will cause a lot of people who currently have diagnoses to lose them. A report previewed in January suggested that as few as 45 percent of people who currently have Asperger’s or PDD-NOS diagnoses will retain them, though a study in The American Journal of Psychiatry, published earlier this month, put the number closer to 90 percent.
Ninety per cent? Even forty-five is a nightmare to contemplate. [Editor’s note: This needs correction. See Sarah TX’s comment.] I think Ken will be ok. At school these days all he needs extra is some accommodations for testing---a little additional time, a quiet room in the disabilities office---and I’m pretty sure that will continue to be covered by his IEP because of his sensory integration disorder, ADD, and anxiety diagnoses. He’s still on our insurance---Thank you, Obamacare!---but I don’t know if his counseling will still be covered if he no longer “has” Asperger’s.
Wallace reports “that the New York State Assembly is considering passing a law to exempt the state from the DSM-5.” But he doesn’t confirm this, something I intend to do myself this afternoon with calls to my assemblyman and state senator.
Like I said, I think Ken will be ok. But what about all the kids who need help and all the parents for whom the diagnosis of Asperger’s is not only their best and only hope but their salvation?
I can’t tell you what a relief it was when the neuro-psychiatrist who diagnosed Ken said to us, “Here’s what you can do to help him and here’s what his school has to do to help him and you!”
Anyway, you should read the whole article. Meanwhile, I have some research to do.
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Young Ken Mannion on his way to his high school graduation, June 25, 2011.
My blood's boiling too. Keep us updated on what you hear from your representatives.
Posted by: Janelle | Tuesday, November 27, 2012 at 11:46 AM
go ken! go ken! go ken! go ken!
i know one true aspergers' person. over the years he has become a pretty good friend. he has a wonderfully sweet and rich baritone voice and is a staple in jingles and background vocals. he performs almsot exclusively in the studio where the environment for performance can be closely controlled.
one of the many amusing things about my friend jonathon is that he always pronounces the sydrome to sound like "ass burgers." it has provided many a fun moment at hamburger hamlet after a session.
waitstaff: and what can i get you?
jon: i'll have the ass burgers, with fries and an ice tea.
jon and i: (laugh laugh laugh giggle smirk)
p.s. your analogy to blind people and traffic signals is spot on. it's not that they don't know the signs are there, it's just that it is hard to recognise and process them.
Posted by: minstrel hussain boy | Tuesday, November 27, 2012 at 01:00 PM
Quick point - the AJP is predicting that 91% of people diagnosed with Aspergers syndrome or PDD-NOS will keep their diagnosis (or, presumably, a similar one) under DSMV-5. This will probably be a nightmare for that 9% though.
Since 'old media' seems allergic to hyperlinks in online articles, here's the issue of AJP which discusses DSMV-5 and ASD. There's a good editorial which cites the 45% retention study and mentions a new diagnostic category 'social communication disorder'.
Personally I don't really understand why they'd want to change the diagnostic criteria if it's supposedly going to capture roughly the same number of diagnoses, but I'm not a psychologist.
Posted by: Sarah TX | Tuesday, November 27, 2012 at 04:10 PM
Sarah TX, thanks for catching that. I misread that part badly. I'll correct it when I get home. Also, thanks for the link to the study.
"Social communication disorder"? That sounds like a way to pathologize being a jerk.
Posted by: Lance Mannion | Tuesday, November 27, 2012 at 04:36 PM
the cynic in me says the change is pushed by insurance companies who don't want to keep paying for autism services.. cf.
The putative reasoning is different: the new understanding of autism is as a spectrum and not a discrete set of diagnostic points; the DSM-5 is supposed to codify this. The 10% to 50% of people, depending on which study you believe, who then drop out of the diagnosis, are a mere side effect.
Posted by: Doug K | Tuesday, November 27, 2012 at 06:56 PM
also see at Laura's place, a good discussion.
Posted by: Doug K | Tuesday, November 27, 2012 at 07:14 PM
Thanks for this. I have no children and no connection to anyone with Asperger's, but it's a window into the human mind that I find useful in trying to understand not only others, but also myself. And a reminder that it's a person, not a condition, that we're talking about.
Posted by: Mark P | Wednesday, November 28, 2012 at 10:11 AM
I work in a primary school. Kids at my school and their families are usually just beginning to encounter the collisions with "neuronormal" expectations. You're right; one size does not fit all. Kids come in all varieties, and kids who appear to have behaviors that might fit on the spectrum are all different. As the school counselor, I try to be a friend and make my office a safe space. I'm lucky and the kids at my school are, too, that we have competent and concerned administration. Not all schools do and then staff end up focusing on the test scores and nothing else.
good luck to your son
Posted by: Nanzee | Friday, November 30, 2012 at 07:19 PM
Lance, as an FYI, the IEP does not exist at the college level. Students with documented special needs can have accommodations such as a distraction-free environment and extended time, but it's not an IEP.
My 10 year old has Asperger Syndrome. I always say, if you know one person with Asperger's, you know one person with Asperger's. So different, yet so similar. I think it's because Asperger's is the lens through which the personality becomes ... not distorted, but transformed, maybe?
Posted by: Wendy | Saturday, December 01, 2012 at 10:47 PM
Wendy,
" I think it's because Asperger's is the lens through which the personality becomes ... not distorted, but transformed, maybe?"
Very good way of putting it.
My son's college asked to see his last IEP from high school in order to gauge what services and accommodations to provide for him. So, yes, you're right, technically he doesn't have an IEP, but his IEP is very much a part of things still, and on it it says he has Asperger's, which as of the other day, no longer exists, according to the APA.
Posted by: Lance Mannion | Monday, December 03, 2012 at 09:42 AM
I am an only an occasional lurker here but I am delurking to say, this is an incredibly perceptive and intelligent description of Asperger's and (for lack of better words) the higher-functioning part of the autism spectrum. I say this as a mother of a teen with HFA and the wife of a man with many characteristices of Asperger's. I wish there was a way to have it republished where it could be more widely read!
I was excited to see the New York article but very frustrated when I finished it. You gave words to some of my uncomfortable feelings with it, particularly when you took apart the "lack of empathy" canard -- that's long been a pet peeve of mine.
There is definitely a new, faddish aspect to the use of the words "autistic" and "Asperger's. Not too long ago, an art review in The Times referred to a conceptual art exhibit as "overall...nearly autistic." Huh? was all I could say to that.
I cringe when I hear and read, "That's SO autistic" (I can't help but hear shades of, "That's SO retarded.") I did not know what to make of it when Anne Lamott, in a NYT Book Review interview, said that if she met her favorite dead authors, she would "sit before them, rocking autistically." And of course, these are just a few examples, almost every day seems to bring another.
What does it mean and reflect about our culture that "autism" and "Asperger's" are now some sort of slang, for exactly what I'm not sure. "Too wierd for words"?
And is this new, higher profile helping or further marginalizing people on the spectrum? Not expecting answers, these are just things I wonder about and thought the New York article might have addressed.
Posted by: Barbara | Tuesday, December 04, 2012 at 10:30 AM
I've never been diagnosed with Asperger's, but most people who know me say I have it. Last I heard there was no treatment, so I've never seen the point in getting a diagnosis. I'm 40 years old; the syndrome was not commonly diagnosed when I was in school. I saw quite a bit of myself in your description of your son.
Like a lot of Aspies, I went through school with flying colors. Bullies were a problem in elementary school and dating was minimal in high school and college, but grades were never a problem for me.
After college has been more difficult. The book _Asperger's on the Job_ estimates the unemployment rate for adult Aspies at 85%. I don't know if that's true, but I've experienced prolonged periods of unemployment, one of which continues today.
What I'm trying to say is that generally, for Aspies, school and college are the easy years. Our distinct lack of charm is much more detrimental in later life.
Good luck.
Posted by: Jay | Tuesday, December 11, 2012 at 02:57 PM
It was only after my brother died that we (siblings, not my parents) realized that he exhibited many traits of Asberger's syndrome. The problem with our recognizing it earlier was that he was also born profoundly deaf. My mother had Rubella when she was expecting him. We always attributed his social awkwardness with his handicap; yet there were many socially skilled and well-adjusted deaf people in the deaf and hearing community that were not isolated, detached, obsessive or as misfitting as my brother. He seemed to get worse as an adult: more detached, less willing to assimilate.
His Asberger's, not his deafness, was probably the reason he died young. He refused to seek treatment or tell anyone about his cancer. He knew he was gravely ill and never let us know. Perhaps now we are better educated and will recognize the signs and be more aware, more vigilant toward people with this condition.
Posted by: Lorettadillon | Sunday, December 16, 2012 at 12:31 PM