There seems to be a movement to accept any and all behaviors of children on the spectrum, and from the comments on this otherwise excellent article ("I resemble that remark!") there are people that see any interventions or attempts to treat these children as abusive.
My six year daughter is asperger (or would be if that were still distinct) and frankly her behavior is not just disruptive but absolutely horrible - she tantrums, bites and hurts anyone around her when she can't properly communicate her current "need" - and that need may be something completely unreasonable like ordering that the Santa at the mall be immediately removed from her vacinity.
Not all behaviors of autistic children - or adults - is ok and to be be cherished as a "difference". There are some behaviors that are fine - obsessions about dinosaurs, say, but there are many more that must be addressed before the child enters society. Smearing yourself with poo is NOT one of those differences that should be embraced.
Sorry, ranty after an afternoon having the shit kicked out of me because I wouldn't forward the Harry Potter audiobook to the correct precise instant she wants.
One other completely unrelated thought on this matter is that I really think that 1000 years ago, children that exhibited the type of developmental problems I've described would likely have been left in the fields to perish.
The Germanic myths around "elves" stealing children and replacing them with "changelings" often referred to as "oafs" seems to correlate with the behavior changes commonly seen around 3 years old in autistic children.
The myths that I've researched commonly described parents leaving their "changeling children" outside in the hopes that the elves would return their original children - but three year olds are not best known for their survival skills even when they're not autistic...
Take a look at David Lancy's The Anthropology of Childhood; he describes in extensive, verging on exhaustive, detail precisely what you're saying. I just read it and wrote much more about the book here: http://jakeseliger.com/2015/03/05/thoughts-on-the-anthropolo....
I'd think they would get beaten first before being left out in the fields.
To quote wikipedia[0] on the matter:
> Until quite recently, children had very few rights in regard to protection from abuse by their parents, and still continue to do so in many parts of the world. Historically, fathers had virtually unlimited rights in regard to their children and how they chose to discipline them.
> There seems to be a movement to accept any and all behaviors of children on the spectrum,
I would be interested to see comments made by people who use the diagnosis to excuse poor behaviour. (Edit: I reworded this to be less confrontational and less angry. Sorry for original wording.)
I am aware of people struggling to get more acceptance of neuro diversity. That's because they're fed-up of being mocked (if lucky) or murdered (less lucky) by police
> DAYTON, Ohio (CN) - Dayton police "mistook" a mentally handicapped teenager's speech impediment for "disrespect," so they Tasered, pepper-sprayed and beat him and called for backup from "upward of 20 police officers" after the boy rode his bicycle home to ask his mother for help, the boy's mom says.
It's not really surprising that neuro-atypical people are getting militant when they're faced with widespread discrimination that causes shorter, less good, lives.
My wife would probably be better able to respond to specific websites and discussion as she's been far more involved in the online communities surrounding our daughters disorder. I've asked for some links from her, but there were several comments in the linked article that seem to suggest accepting neuro-diversity warts and all.
Believe me that I'm tickled by my daughters extreme interests - but we DO want to cure her of her disruptive and dangerous behaviors.
We have called the sheriffs office during one of our daughters most extreme tantrums - they couldn't have been nicer or more understanding and helped us out considerably during their visit. I suspect our county sheriff (Santa Cruz, ca) has had extra training in that regard.
On the other hand, we have also had to deal with child protective services, called because of bruises noticed by the school. We got the third degree, but since we've also had to do a lot of video recording of her tantrums, it was pretty easy to establish that - aside from our having to restrain her, her bruises were self inflicted.
On her good days, she's a joy and a wonder. On her bad days, she's a beast from the nether pits of hell. But we will stick by her.
> On her good days, she's a joy and a wonder. On her bad days, she's a beast from the nether pits of hell. But we will stick by her.
I don't understand this. Shouldn't the behavior be constant?
Have you been able to coax good days out of her by changing the environment, food, your behavior, etc? Can you predict the bad days? Is there a pattern?
> I don't understand this. Shouldn't the behavior be constant?
Spoken like a programmer. Adults aren't even consistent. Ever seen a woman going completely apeshit at a male for some reason (sometime justified, sometimes not)?
Biological organisms have significant variations. Sometimes you get an angel; sometimes you get a devil; sometimes both.
In the past, resources were sufficiently scarce that children (and adults) who weren't capable of fitting into society were killed or allowed to die.
I've never seen a woman do this so I suspect this is just your stereotype-based expectations biasing your interpretations. Peoples' memory of events are notoriously unreliable and extremely susceptible to the power of suggestion, like the suggestion that women are more prone to emotional outbursts, which is an age-old trope. http://www.theguardian.com/media/mind-your-language/2012/mar...
Children, neurotypical or not, have very inconsistent behaviors. You may be able to generalize in some broad cases, but a child presented with a stimulus may react one way any given day, and completely the opposite the next day. They're as unpredictable as can be.
I think @salgernon was expressing his perception, practically in the form of a question, seeking constructive dialog on the topic. I think a call for citation followed by random anecdote is not a great response to an invitation for a thoughtful dialog with someone with unique experience in the field.
I'm not sure if you're talking about a completely different issue, or the flip side of the same coin. Awareness and sensitivity to others' abilities I guess could be on the same spectrum as making excuses for violent behavior, but I think it's different forces at play.
We definitely need more empathy in this world (and lets not even get into police assault here). But at the same time, there can be a good reason why a child is misbehaving or even acting violently, but that behavior is still unacceptable. I've never personally experienced the parent who feels like their child is entitled to their kid's violent outburst in public space ____, but certainly we hear the stories. More often, I just feel awful for parents who are dealing with a meltdown in the moment, because, been there, done that.
As a parent in that situation, it's usually just, "ok, lets get the heck out of here." As a parent watching those situations, I always want to help somehow, but it seems like there's a huge taboo to even acknowledge the situation, let alone try to intervene. Personally I'd be too afraid to even open my mouth because the other parent would assume I was going to chastise them rather than try to help somehow.
Actually, (as another person on the spectrum), I believe you've just been tone-policed by a privileged person. Note that the confrontational tone, random anecdotes and judgement of people involved in the community were all present in your post's parent - so the only difference seems to be that the original post is a neurotypical parent.
This is a common strawmanning of communities, so it's no wonder some of us get irate - I do, for example. Sure, there are neglectful parent who try to hide their neglect (or inability to handle an overwhelming situation) behind claims that it's all "working as intended" - but positing them as representative of people who ask for more acceptance is unfair.
Ultimately, confrontation and aggression isn't all that great, but you need two sides to keep things civil. I believe your comment was far less aggressive than it's parent, which isn't surprising for someone who's conscious of their tone issues - and that its perception comes from a bigger dissonance between expected and perceived aggression.
This wasn't tone-policing, it was tone-neighborhood watch at worst. You can't dismiss an argument because of tone, but you certainly can call someone's attention to how their argument may be interpreted by their tone.
There's no straw-manning going on here. He interpreted (quite sensibly in my opinion) it as a challenge to the father. Regardless if that was intended or not, it was the first-read impression I had as well. Now that the OP has clarified his position, now I know that it was not the intended position. If it were not for the response, none of this would have been clarified.
Nice name for a tone-lynch-mob, but are you sure that's any better than tone-police?
> as a challenge to the father
Seriously? The OP starts with "There seems to be a movement to accept any and all behaviors of children on the spectrum". If that's not the challenge, then I don't know what is. It's not possible to slap someone with an iron gauntlet over the Internet though. That's as fair as "there seems to be a movement to enslave all men/whites/extremely rich rocket company owners" - I'm even sure you're going to find a few people who do have those beliefs, but representing them as anything but fringe is unfair and challenging.
While I gently agree with some of what you say it's probably important to note that I say in my profile that I struggle with tone and that I welcome email or downvotes to guide me to do better. And I sometimes talk about the increased hostility on HN.
So I invited this tone policing. (And of course I continue to do so)
> I believe your comment was far less aggressive than it's parent,
I'll be honest: I thought so too. It's interesting to me that other people read the posts so differently.
Still, the change I made stopped downvotes so tone matters.
I don't have any numbers, but it is not entirely unfeasible that they would be. Police tend to react strongly if someone acts confrontationally with them, and this is something that autistic people might do more often. They don't mean harm, but how would the police know they don't?
Police can be trained to recognize various disorders and understand how to deal with them non-violently, but in the end, it may be difficult to see quickly that you should act differently if a non-compliant and threatening-looking person is autistic, compared to other non-compliant and threatening-looking persons.
> There seems to be a movement to accept any and all behaviors of children on the spectrum, and from the comments on this otherwise excellent article ("I resemble that remark!") there are people that see any interventions or attempts to treat these children as abusive.
Maybe. But there's another trend that's beneficial, and can sometimes be mistaken for "everything is acceptable/justifiable/let it be" -- and that is the movement to understand any and all behaviours.
The latter is very important in diagnosing and helping children.
In order to know what is abnormal, we must first find out what is normal. And a helpful, meaningful definition of "normal" certainly isn't as simple as "what I/we used to do as children". It is rather unfortunate when children services, psychologists and teachers are sometimes so wrong/ignorant that such a simple definition of normality is actually better than what the "professionals" live by.
Thankfully that is also something that can be and is being improved with education (and research).
As with any child, one can address behavior issues without shaming or hating who the child is. In an adult relationship, it's the difference between "You make me feel bad when you do xyz" and "Why do you always have to be such an a-hole" - these are two very different ways to raise an issue.
That's what many (including me) are saying about autism. The point is not to cherish harmful behaviors. The point is to cherish the children who are different. Their differences make it harder for them to learn some behaviors, but they do have a positive side much of the time.
My son is awesome and I would change nothing. Personally I find him much easier to get along with than "typical" kids.
In addition to this, bearing in mind that people with autism process emotion differently, it is very likely that shaming is an ineffective way to promote learning.
You're reading too much into the article than is there. The father in the article mentioned speech therapy, therapists and lots of doctors. It's clear that he is doing what he can to help his daughter, this particular article just wasn't about that part.
This article was about self-acceptance, about accepting something about yourself and your family that you didn't choose. That doesn't mean that he ignores it, or doesn't work to change his daughter's behavior. Acceptance doesn't require you do nothing. Acceptance can help see all the ways the disorder is impacting things more clearly, and that can lead to more effective interventions.
(Side note- I do absolutely agree with you on the current trend of explaining away mental disorders as gifts, 'differences' to be tolerated, or evolutionary trends that don't make sense anymore. No, autism\ADHD\ect are not a gift. Serious disorders that affect all aspects of your life are not something to celebrate or ignore.)
I see where you are coming from and I felt urges to leave a comment on that page for reasons similar and others as well. It's almost as if the diagnosis permits the parents to allow their children to misbehave. The diagnosis explains away the need to punish them, it's just the way "I made my kid". That sounds worse if you ask me!
Before my son was diagnosed with any issues and before we had guidance, my son was is a constant state of being punished for behaviors that any parent would punish for. He hit the age where children become defiant and push boundaries and, having already had another older kid, we thought we knew what we were doing.
It turns out that really my son was suffering and punishing him for his behavior wasn't helping him. He was miserable, we were miserable, and nothing was improving. Only once we understood what we dealing with and changed away from thinking of his behavior as misbehaving did we start to make progress. And now he's a wonderful well behaved kid.
I think it's really important for kids with actual issues to be diagnosed. For every kid were diagnosis might possibly permit parents to make excuses for their children, I suspect there are 10 more with frustrated parents doing all the wrong things.
> It's almost as if the diagnosis permits the parents to allow their children to misbehave.
It may seem that way on the outside, but that's only because you haven't lived on the inside.
It's about understanding where these behaviors come from so that you and your child are better equipped to deal with them.
Sad to hear about your situation. A very close friend of mine is in a similar one, and I see how his life is. It's hard. I always tell him he's lucky to have a lot of faith, otherwise I don't know how he would have coped with it (I wouldn't have been able to, in his shoes).
When initially diagnosed, the doctor refused to write a diagnosis become the new DSM was about to be published, and she wanted us to come back In two months once it was published so she could write the disgnosis as autism spectrum disorder.
Aspergers is now considered part of the autistic spectrum rather than a distinct diagnosis - and this is particularly only really important when considering what services are made available. For instance, having the autism disgnosis allows the public school she attends to pay for an individual aid for her in a mainstream first grade class, while a year ago, Aspergers as a diagnosis would have fallen through the cracks sand she might have been sent to a special education classroom because of her disruptive behavior.
Specifically it was folded into ASD in the DSM-5, the 2013 edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. The change was rather controversial, and in any case the DSM is only considered gospel in the USA.
(As a person with autism/Asperger's, I'm not sure I have a strong opinion. Asperger's is clearly at least related to autism, and the autistic spectrum is a pretty broad umbrella anyway.)
What does "autism" even mean today? I've heard it used to describe everything from awkward introverts with technical interests, to kids who are nearly mute with speech disabilities. Do anti-vaxers think they're saving their kids from becoming software engineers?
I share your frustration. Autism, Asperger's Syndrome, "on the spectrum" - these words and phrases all seem to mean precisely whatever the person saying them wishes them to mean, from a pseudo-sympathetic acknowledgement of someone's problems to a cutting dismissal of behaviour they find unpalatable or challenging; and all delivered, of course, without any clinical frame of reference.
I miss the days when people could just be shy or awkward or irritable or even narcissistic without it eliciting an armchair diagnosis.
I think you're missing the point of what "the spectrum" is. Let's take another example, dyslexia. Some people suffer considerably worse than others; and some people's dyslexia is so mild that it might never be formally diagnosed. The same is true for autism. It's not a simple black-and-white case like someone having a broken leg. There's a gradual curve of disability that ranges from the "has to work a little harder to get along in every day life" to the extreme cases were 24/7 care is required.
As to why it might appear that different people refer to different things when using these terms: that might just be because their reference points are from different points along the scale. Or in some cases, they might just be ignorant but vocal bloggers; but sadly this happens in all aspects of science (eg the anti-vaccination campaigners spouting shit doesn't mean that doctors don't know what they're talking about when they promote the use of vaccinations).
When that trait interferes with your daily life. It's pretty common for people to be afraid of heights but if that fear interferes with getting a job, having relationships, enjoying everyday activities, then that's a disorder.
The problem is lay people think of "autism" the way that creationists say evolution is a "theory". An awkward introvert with technical interests isn't going to be professionally diagnosed as autistic unless they have some pretty serious and defined symptoms. But that doesn't stop misinformed lay-person usage in everyday conversation.
My issue with that attempt to define a disorder is that it can medicalize mismatches with artificial environments. (That is, almost all environments humans live in.) It in effect defines all deviations from "normal" as defects.
Imagine you're living in a culture of subsistence agriculture. And imagine further that you are thin, quiet, nearsighted, physically delicate, and are inclined to spend all your time reading. You are basically unsuited for the available jobs, nobody wants you in a relationship, and what everyday activities are available are ones you don't enjoy. So the village headman decides that you have a disorder and need treatment, by which he means regular beatings. Of course, you might make a fine librarian, but that's not an option.
The same thing was done with gay people for ages. Or women; note how female hysteria was a medical diagnosis that eventually vanished: http://en.wikipedia.org/wiki/Female_hysteria
As another example, quite a lot of American children end up medicated because they are inconvenient for overworked teachers in classrooms that follow industrial models of education. A friend of mine was once a substitute teacher in a class where every single student had been diagnosed with ADHD and was on medication. The daily life that their trait was interfering with is entirely artificial. At some point I think one has to wonder whether the problem is the trait or the constructed environment that the trait isn't a good match for.
I work in a Sudbury school where we have two kids diagnosed with autism. When they first arrived, they had some problems. But in the free environment of our school, they have become as amazing as all the other children in the school. I don't even think of them as being autistic.
We all have deficiencies. What we all need are environments that let us figure out how to cope with them.
Of course, it is all matters of degree and people need to be able to take responsibility for their actions and needs. Not all can and that requires something different.
It should be noted that in kids nobody can say whether it will _always_ interfere with their daily life in a material way. Autism diagnosis in a preschooler usually (90%-ish?) means it will, which is amazingly accurate if you think about it. But it's definitely not 100%. So in little kids, the diagnostician is saying they _think_ it will interfere with daily life (and that it is interfering today, but saying that about a 3-year-old doesn't necessarily mean always and forever).
Another issue is that it's sometimes easier to have a personal difference interfere with school than it is to have it interfere with real life. That argument is at http://intellectualizing.net/2015/03/12/schools-are-disorder...
Real life is more flexible than most schools.
Personally, colorblindness is my go-to example here, because it is similarly spectrum-ish (and not in the punny sense).
We use the term "colorblindness" in a monolithic way, yet it refers to any of at least eight different things, each of which is caused by a different genetic mutation and produces a different physiologic result. Even the term "red-green colorblindness" is misleading, because it could refer to at least four different things.
Many people with "colorblindness" can actually live their whole lives without ever realizing it; the most common form (deuteranomaly, which is what most people mean by "red-green colorblindness", despite it actually affecting the yellow-orange-brown area of the visible spectrum) rarely if ever interferes with common day-to-day life for many people who have it (like me). On the other hand, the rarer forms can significantly impair vision to the point that common tasks become difficult or even impossible. Yet most of the time we use the same term, "colorblindness", to refer to all of them.
In much the same way, "autism" refers to a wide range of situations, some of which have significant effects on day-to-day life and some of which have much lesser effects.
> You're missing his point. At what point does a personality trait become a disorder?
In the case of my nephew, his condition (his pediatrician diagnosing him to have Autism) became a disorder when it was proven that his symptoms were the result of numerous factors, all resolved under a licensed doctor's care using standard blood and stool tests to detect, and standard biomedical interventions to correct. He suffered from numerous food allergies, a raging yeast infection, and heavy metal poisoning.
His issues arose mostly as the result of his body's deficiency in creating glutathione, an essential antioxidant produced by our bodies to aid in the excretion of toxins. This deficiency was confirmed by genetic sequencing that revealed an MTHFR mutation, passed on to him by both parents, therefore a double mutation, limiting his glutathione production to 7-10% of normal.
His symptoms started at about 2-1/2. At the age of 7 or so, his doctors diagnosed him as "indistinguishable from his peers", after the interventions and much developmental therapy to help him catch up. He eats a rotating diet, where the same food does not repeat for several days at a time, and takes numerous supplements to address deficiencies revealed by the aforementioned blood and stool samples.
The only lingering sign of autism we can notice is he still loves some good bear hugs. I'm happy to oblige him.
Those days never existed. I'm from a generation where many that now would be considered "on the spectrum" were diagnosed with personality disorders. (Narcissistic being one of them btw, a diagnosis, not just a common adjective, and the most fashionable being "borderline".)
With exactly the same broad spectrum of opinions, with or without clinical frame of reference. When it comes to psychiatry, science appears to be as sensitive to fashion as society in general.
"Autism" is a 'spectrum disorder' so at the low end you have Asperger's which does not involve linguistic or cognitive development. Unfortunately, at the other end you get significant impairments in social communication and interaction across multiple contexts as well as significant cognitive impairments.
Much confusion stems from the sliding scale definition as it can be difficult to separate (no vs mild), (mild vs moderate) , or (moderate vs significant) impairment.
Twelve years ago I volunteered to run summer camp activities with autistic kids. These kids had speech problems, and were constantly shaking, arms curled, their thoughts were aloof and obsessive. Yes there was a spectrum, but there was no doubt who was autistic.
Newly found, or self diagnosed persons have clarity of mind that was completely absent from traditionally autistic persons.
Frankly, if you can think straight you shouldn't be let off the hook. To speculate, perhaps our society is getting bad at instilling social behavior, as kids are increasingly isolated.
Based on my experience with the system, most psychologists and doctors have a pretty firm idea of what is an is not autism even if it's a bit fuzzier for the rest of us.
They do have a firm idea, but not for a good reason. Doctors want to diagnose with yes or no (and it has its legal consequences). Yet, all current evidence shows that most likely there is no sharp transition between having autism and not. For some readings, look at papers at https://www.mendeley.com/groups/519371/asperger-syndrome-and....
Diagnostic Criteria for 299.00 Autism Spectrum Disorder
Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
!.Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers
I am 50yo, am a struggling recovering addict, and I totally suffer deeply from all 3 of these criteria and have for most of my life...
No one ever mentioned the word autism to me, and I've been to two high quality, long-term impatient treatment centers in my life.
I suffer from these to this day, and can't help but wonder how much of my addiction issues are directly related to them.
It feels to me, looking at the list through tear-clouded eyes, that almost all of them are.
Your last sentence was heart-breaking. Whether or not the list applies to you - whatever you've gone through - and whether you are somewhere along that autistic spectrum - none of them define you on their own. You are not the sum of checkboxes on a list. You're a person who has survived a series of challenges. Keep surviving and keep being a person, not a count of checkboxes.
It's autism by that definition when those symptoms interfere with your daily life. Otherwise it's called being human.
That said, not all psychiatrists are created equal, and some of them suffer from the same biases as the rest of us. Try talking to an autism specialist.
It is autism regardless of it interferes with your daily life. The decision if you want to treat it or not (should) depend on if it interferes with your daily life.
Not necessarily. If you ask 100 people if they have ever encountered these issues, all 100 will say yes. It's those whose lives are negatively impacted by these issues outside the norm who get the diagnosis and need outside help.
Thanks for sharing! Well this message you wrote shows you are capable of at least #1 and #2, and hopefully #3 as well :)
I have heard that you will never find an addict who isn't trying to numb pain in their life. If you can deal with the pain you feel separately I hope that the addiction will become a much easier battle to win!
Numerous times when I have gotten to know people who interact with autistic kids, or have been a caregiver for an autistic child, they have spoken to me as though I have autistic tendencies (and knew about them) and so lately, as an adult, I have been wondering whether Im on the spectrum.
I know that life is a struggle, and some of the things I struggle with could be related to tendencies I share with others. I dont know why, but the thought that I might be even midly autistic fills me with hope, thinking that if I can learn to function despite my difficulties and I'm not alone, then maybe I can help others do the same.
I can't say whether you're autistic or not, but I can tell you that you have company (you are not alone) and you are appreciated!
To medical professionals, it does have a narrower definition, although it may seem vague. Here is the current ICD-10 description for childhood autism (F84.0):
A type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour. In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression.
* A disorder beginning in childhood. It is marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest. Manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual. (dsm-iv)
* A disorder characterized by marked impairments in social interaction and communication accompanied by a pattern of repetitive, stereotyped behaviors and activities. Developmental delays in social interaction and language surface prior to age 3 years.
* Autism is a disorder that is usually diagnosed in early childhood. The main signs and symptoms of autism involve communication, social interactions and repetitive behaviors. Children with autism might have problems talking with you, or they might not look you in the eye when you talk to them. They may spend a lot of time putting things in order before they can pay attention, or they may say the same sentence again and again to calm themselves down. They often seem to be in their "own world."because people with autism can have very different features or symptoms, health care providers think of autism as a "spectrum" disorder. asperger syndrome is a milder version of the disorder.the cause of autism is not known. Autism lasts throughout a person's lifetime. There is no cure, but treatment can help. Treatments include behavior and communication therapies and medicines to control symptoms. Starting treatment as early as possible is important. nih: national institute of child health and human development
* Disorder beginning in childhood marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual.
* Type of autism characterized by very early detection (< 30 months), social coldness, grossly impaired communication, and bizarre motor responses
The "disease" analogy is grossly misleading because it makes you think it's a single "thing" with a single cause; the right analogy is to a dimensional trait (such as intelligence), or traits perhaps (such as both social/communication skills on the one hand, and repetitive behaviors on the other). Then think about many different conditions resulting in this trait, much as many different conditions result in intellectual disability (or intellectual superiority). As with intellectual disability, autism diagnosis is more of a semi-arbitrary cutoff on the scale, rather than a binary yes-or-no.
I say "semi-" arbitrary because diagnosis is an attempt to locate "where on this scale people start to really need extra help," but "arbitrary" because there isn't a strong scientific reason to put it at say 99.1 percentile vs 89.9 percentile.
As with variation in intelligence, autism appears to be mostly genetic, with some impact from environment. The underlying condition resulting in autistic traits varies a lot. Sometimes, the condition may have other consequences, such as seizures or intellectual disability. Other times, the condition is best thought of as simply an extreme personality type, or something like that.
Think about how various conditions resulting in ID can have accompanying issues (such as heart problems with Down syndrome). When someone says seizures or gut problems or whatever are "autism," that's like saying heart problems are intellectual disability. It doesn't make any sense. Autism is just the social/communication part, not everything that's up with someone.
If you work in tech, you know a lot of autistic people, you just maybe don't know it, and they often do not know it themselves. Some of them are quite successful and not "obvious"; others are extremely clear to anyone who knows what to look for. But most of them probably do have some level of real disability, or if nothing else did have some level of it as children.
For many of us the disability is primarily in personal life (friends, etc.), or historical childhood difficulty, and we are highly competent at work.
I did not imagine that the diagnostic label applied to me until my son was diagnosed; but now I realize that it does apply or very nearly apply to me and several people I know (but I have no idea how to bring it up). Especially when they are having kids, I wish I'd known earlier that autism can be kind of the way my family is and many people I know are, and that it isn't always this big scary thing.
The tech industry should be much better informed about autism given its prevalence in our coworkers and ourselves. Even the many who aren't diagnosable may be closer to autistic than to average.
When those of us who are around 40 were kids, the diagnostic rate for autism was about 1/1000 and it's now a bit above 1/100, higher for boys. So the delta between those is the number of undiagnosed adults walking around today, who would have been diagnosed by modern criteria. It's a lot of people.
Some number of those got a different dx in the past (such as intellectual disability), but the kinds who are now in tech probably got no diagnosis at all most of the time, other than "weird kid."
People have co-opted actual, real diagnosis and started to use them to describe things that are vaguely related/associated with that thing. People who are adamant about being tidy and organized "have OCD". People who are bummed out that their gf just broke up with them "have depression". People that are socially awkward "are autistic".
1. The bizarre * in "retardation", as though it's a slur like "nigger".
2. It overplays "now we know it's all autism". The whole point of "autism spectrum" concept is that it's a name for a basket of symptoms that are NOT understood by current science. We don't have reliable biological tests yet (but there are some great correlates), we don't know the mechanism, we don't now how to reverse it. All we know are some ways to help people meet their life goals by learning ways to work around the skills they lack.
The article has the feel of someone with an extreme-seeking personality: he swung from an extreme homeopathic anti-scientist to an extreme "sciencist", assigning magical powers to "science", not understanding what science actually says.
If you're the kind of person who doesn't use the word nigger then you should probably stop using the word retarded unless you're talking about mechanical movements. It's pretty much only used as hate speech now.
Edit: when you use the word retard as an insult you further the stigma that people with a learning disability face -- and those people already experience significant stigma. But it's also just not very insulting to the non-learning disabled people who you're using it against. They're just as insulted if you call them stupid or dumb.
When you write an article about something that has big overlaps with learning disability you need to be aware of the audience who will hate you if you use words like retard.
In New York City there is an agency called "The Office of Mental Retardation and Developmental Disabilities."
There is a fascinating article about how this agency has resisted changing their name.*
>The debate over erasing the term “retarded” illustrates the issues that can arise as language shifts. Terminology was important to the parents who fought on behalf of children who until the 1950s were labeled “moron” or “imbecile.” For them, the initial popularizing of the term “mentally retarded” was a victory. A once-hidden population now had a name and a state agency.
I have a few colleagues who have a diagnosed learning disability. They strongly reject the word "disabled". They sY that labelling them as disabled transfers blame to them. Bob can't understand that document? Well, of course not, Bob has a learning disability. But in that situation the actual nlame lies with the person who created the document - that person lacked empathy, understanding, and the skill to make information meaningful and accessible. And in this situation Bob is not paid to read and understand information, while the person providing it often is paid to provide information.
This echoes the sentiments from other disabled groups. You will often hear a person using a wheelchair say that the wheelchair is not the problem; that stupid bus without a ramp or the steps outside a shop are the problem.
There is a difference between US and UK usage. US usage of learning disability includes things like dyslexia or dyscalcula; in UK these are probably learning difficulty.
I don't disagree with anything you wrote, but in this article it was used in terms of, "Now we diagnose these behaviours as autism, whereas in the past they would have been called mental retardation." In that context it's hard to see how someone would be offended by the word. That said, I think it's a stretch to be offended by the unusual asterisk as well (or to discount the rest of the post because of it).
How are we to prevent retarded people from reaching positions of power where their retardation would harm others? Not talking about who is retarded and who isn't could cripple organizational decision making, causing entire organizations to behave in a retarded way.
Now I understand and respect your concern for the feelings of the retards, and we should of course try to hurt their feelings as little as possible. But discussing who can and cannot be trusted, and here level of intelligence is an important factor, is an instinctive human social behaviour that is at the core of a functioning society.
tl;dr The ideas you are advocating could destroy society... retard
If you still say things like "I was gypped" or "I got Jewed on that deal" then knock yourself out, keep using the word retard.
> How are we to prevent retarded people from reaching positions of power
I work with people who have various learning disabilities who are in positions of power. Not just token power -- controlling hundreds of thousands of £s of power; part of recruitment and selection power; elected representative power.
Those people with a learning disability suffer real harm when you misuse the word retard to insult people without a learning disability. Not using the word isn't about protecting their feelings although that is a nice side-effect. It's about changing a culture where people with a learning difficulty are not murdered by police or allowed to die by doctors or discriminated unfairly against at work.
But all those other people that you call retarded? The ones without a learning disability? There are a whole slew of other, better, words that you could use. Your vocabulary is too limited and so your invective suffers.
Language has appearently changed within your circle of friends. Now you are trying to impose your language on the rest of the world by decree. I think that is disrespectful.
But the meaning of retard is a bit of a side-track. Because as you say yourself
>They're just as insulted if you call them stupid or dumb.
What you are trying to achieve is not just to change language in superficial way by just banning a word. That in itself would not be so bad. You are trying to change language on a deeper level so that a particular thought is impossible to express. You don't want there to be insults based on level of intelligence. You don't want there to be insults applicable to poorly thought out ideas. That is the geniuenly terrible idea.
retard has been on the last of no no words for a while now. Lots of co-workers really dont like it. cant tell if i'm on the wrongside of history but i really need a word for when my friends do something stupid.
"Retard" as a derogatory term and/or as a slur is indeed offensive, and people are using it less and less. It's best to avoid it. If you're still using it, you are on the wrong side of history. Find another word instead.
But "mental retardation" is a clinical term that is perfectly acceptable, and to bleep it for fear of saying it or spelling it out, is quite ridiculous. This is the first time I've ever seen it done, in fact. It's as silly as bleeping out "Niger river" because it is similar to a slur and shares some amount of etymology.
In fact the reason why "retard" is offensive, is because it is taking a term for a mental condition ("retardation") and turning it into a slur. It's similar to how calling something "gay" in a derogatory manner is offensive.
With "retard", the derogatory use became so much more prevalent than the clinical that even the latter was overshadowed and began to take on a negative connotation (at least, for many people).
You most likely prefer "retarded" because it's feels different, and this is closely tied to it being a "no-no word". Swear words trigger a different part of the brain (limbic system and basal ganglia), so they feel more emotive, but if we didn't train ourselves to store them that way, they wouldn't.
Your cognition is spot on and you should be proud that you've been able to reflect on your usage of the word.
When I decided to stop using "retarded", I chose to replace it with "ridiculous". It was very easy to train my tongue. Since then, my vocabulary has gotten much sharper.
Words can be more or less hurtful to different groups of people. In Britain, calling someone "spastic" is extremely insulting, while in the US it's pretty slight.
autism is now pretty broad. spectrum broad. aspergers is gone. the article seems to insinuate that retarded is no longer going to be a valid state, and most affected by mental retardation will be labelled as autistic spectrum disorder.
i think the whole idea of promoting a label that allows you to speak of someone with a severe illness where they are non verbal and unable to look after themselves, and someone who doesn't make "enough" eye contact, "in the same breath" is pretty dangerous. particularly dangerous when those who create or make things, on whom most progress depends, tick the box.
the euphemism treadmill will therefore eventually accept "autistic" pushing off earlier terms.
in fact i can already see technically minded people labelling each other and themselves autistic, jokingly.
my prediction is that autistic will become an insult and will eventually be replaced by a newer more politically correct term.
Couldn't agree more, and I feel like seeking personalities like these give everyone a bad name, homeopaths and ivory-tower scientists alike.
It's a bit like deciding to be a vegan for years and then deciding that now it's okay to eat meat, but you're going to have to kill the chicken with your bare hands.
This blog post exemplifies the mindset that would beg one to "believe" recent research into autism spectrum disorders. As though belief had any place in scientific research.
The damage then cause when other folks grab this standard and run with it, claiming that now we all know genetics is where autism originates makes me cringe. And this is coming from someone who is deeply skeptical of a great majority of modern scientific medical practices, not because I do not believe they will improve my life, but because a rational and scientific mind must always be skeptical until experience or proof can be offered otherwise.
This article makes a point about mis-diagnosis. It's an important point. Look at dyslexia. There are a bunch of different reading disabilities, but school children are mostly tested for dyslexia. If they have dyslexia they get a bunch of help. If they have some other reading disability, well, it's hit or miss whether they get the help or not. So some people with mild dyslexia are geting copious help, while other people with moderate reading disabilities are not getting any help.
This is why accessibility is important. The people who meed the help and who need the assisstive tech might not be able to get it. So, please, do remember accessibility.
My son has sensory processing disorder and, it turns out, so does my wife. She was never diagnosed as a child and even though it affects her every day, we never understood it until now. My son also has a host of behaviors that come directly from me. I was also never diagnosed with anything as a child.
> In fact, the majority of scientists believe that there is no “autism epidemic” at all—that people with autism are no more common than they were 20, or 50, or 1,000 years ago.
This seems very possible. Although a fiction, there is a good example in the Aubrey/Maturin novels by Patrick O'Brian (Spoiler Alert!):
Dr. Maturin's daughter is born while he is away at sea, and it is strongly suggested that she is on what we call today the Autism Spectrum. Naturally, as a legendary doctor ahead of his time, he recognizes that she is not mentally retarded (or an "idiot" in the language of the period). He prevents his less enlightened contemporaries from essentially trying to beat the condition out of his daughter, and takes measures to provide an environment where she can thrive.
Aspergers here. Great read. My dad had it really bad. It's amazing in retrospect how much everyone adapted their lives around my dad to compensate for his abhorrent behaviors. Not one person said: "Maybe he's got some kind of psychological disorder". That was the hardest part growing up in my household. The not-talking about it.
I'm guessing here that he was nasty and rude as a few students I've worked with were. The real kicker though is that they don't realize what they are doing or saying at all. With adults maybe it's a bit less pronounced but when kids act like that to each other you will hear about it whether verbally or through tears.
What is with the misspelling of retard? Is it so someone can't search for it, or because of the connotations behind the word? Why even use the word at all then? Why not just use one of the other many socially acceptable terms?
Personally I find spelling the word this way is a bit offensive. It's as if you are saying you want to use it, but you know it is wrong, so you will just slightly use it.
A. There isn't much data on prevalence outside the U.S.
B. The rise is hand waved off as better diagnosis by autism skeptics.
C. Looking at causes of autism has been stigmatized because of the anti-vax controversy.
We'll still be sitting here 20 years from now because nobody really wants to get to the bottom of this. Maybe the people who don't use that brand of whatever essential consumer good that causes autism will be the only people who will make it past the next generation and it will effectively breed autism out of the population that way. A whole bunch of people subsistence farming in Africa most likely.
This almost reminds me of Bruce Sterling's story "Sacred Cow" from "A Good Old Fashioned Future" where everybody in Britain and the west dies of mad cow disease and the Indians who don't eat cow take over the world.
One interesting thing is that here in Sweden we have a rather large group of refugees from Somalia that have refused vaccinations because they have been rather heavily afflicted by autism. (Several times higher) Interestingly it appears that it does not help - so vaccines can be pretty much rules out, at least as a single cause, just by looking at this a-b test.
There is quite a lot of research on this:
One research study on this group suggested that it might be related to the low level of vitamin-D in the group, caused by the low level of sunshine in Sweden, combined with that the women is covered for religious reasons. Elisabeth Fernell have published a few articles on this.
So is anyone doing a vitamin D supplement trial for expectant mothers? I wonder how long they'll just leave that speculation out there before anyone tries an experiment. I'll push the snooze button on this one. Society doesn't seem to need a better answer on this than "More diagnosis" or "Because they're muslims".
I don't understand why autism being genetic disproves whatever the anti-vaccination camp says. Do they actually say that the only cause of autism is MMR vaccine? I wasn't aware of that.
I was under the impression (and I could be wrong) that the anti-vaccine individuals are keen to blame anything on vaccines, not just MMR.
On a side note, until we have cold-hard evidence that there is a direct link between vaccines and disease X, I am going to clump these individuals in the same group as "naturopaths", "homeopaths", "gem/magnet/chakra healing advocates", whatever. I know I exaggerate a little at this point with the names, but I really have no respect for willful unscientific beliefs. Even more so when they decide to inflict these beliefs on their innocent children.
I just had a quick look around that site and I wouldn't be referencing it as an argument against anything except good research practices.
They seem to love providing all sorts of links to the publications that back up their arguments, but none to the data they are claiming to refute. This leads to the illusion that they know what they're talking about, but they don't link to what they're actually refuting.
The conclusion of that paper confirms in a very convincing format that vaccines do not cause autism. It explicitly shames the OP with "Further studies on the cause or causes of autism should focus on more-promising leads."
I think tenses are important here. It might have made sense to be wary right after that paper got published in the Lancet. But data accumulated in the reverse direction since then, and now the paper has been retracted and the author has apologized. At some point between then and now, people should have gone back to being pro-vaccine.
EDIT: I normally ignore downvotes but these are confusing.
Andrew Wakefield's work has been investigated and thoroughly debunked.
The first sentence of the WP article (which obeys the Biography of Living People policy) calls the work fraudulent:
> Andrew Jeremy Wakefield (born c. 1957) is a British former surgeon and medical researcher, known for his fraudulent 1998 research paper in support of the now-discredited claim that there was a link between the administration of the measles, mumps and rubella (MMR) vaccine, and the appearance of autism and bowel disease.[1][2][3][4][5]
That article's lead details the many different people who've called Wakefield a fraud - English subjects in English publications at risk from English libel law have called him a fraud.
The bit about him not apologising is burried in the lead, but is clear:
> As recently as February 2015, he publicly repeated his denials and refused to back down from his assertions,[32] despite the fact—as stated by a British Administrative Court Justice in a related decision—that "there is now no respectable body of opinion which supports [Dr. Wakefield's] hypothesis, that MMR vaccine and autism/enterocolitis are causally linked."
> I normally ignore downvotes but these are confusing.
It apparently takes relatively few to grey your comment. I upvoted you and downvoted the Wakefield-ites, and I swapped the gray/color properties. All it takes is a few yahoos who want to deny reality to make it seem like the site as a whole is against you.
My six year daughter is asperger (or would be if that were still distinct) and frankly her behavior is not just disruptive but absolutely horrible - she tantrums, bites and hurts anyone around her when she can't properly communicate her current "need" - and that need may be something completely unreasonable like ordering that the Santa at the mall be immediately removed from her vacinity.
Not all behaviors of autistic children - or adults - is ok and to be be cherished as a "difference". There are some behaviors that are fine - obsessions about dinosaurs, say, but there are many more that must be addressed before the child enters society. Smearing yourself with poo is NOT one of those differences that should be embraced.
Sorry, ranty after an afternoon having the shit kicked out of me because I wouldn't forward the Harry Potter audiobook to the correct precise instant she wants.