Is It Time to Give Up on a Single Diagnostic Label for Autism?
blogs.scientificamerican.com
blogs.scientificamerican.com
Autism is one of the most complex moving-parts mental disorders that I know of.
I'm speaking about kids mainly, because that's what I'm familiar with, but some kids have mood swings and some don't, some have cognitive tempo irregularities, some have sensory disruptive effects, some have learning disability effects, some have communication difficulties, some have spatial permanence issues, some have memory issues, there are a million different components to the autism spectrum.
The autism spectrum is often thought of as a number line, but it actually exists in several dozen dimensions, it's a very deep spectrum, with documented cases all over it.
It gets worse now that there's so much medication flowing around, there are kids who don't have attention disorders getting put on attention meds, kids with normal social skills getting out on psychotic stabilizers.
Autism has been affected strongly by how aggressively mobile the psychopharmaceutical industry has become. It's disgusting. It's completely demonic that mental illnesses are graphed and measured and these MEDICINE companies are optimizing for how much orange plastic bottles are being assigned to children!
The article is right, DSM did call for it a few years ago, but it will take time and effort to reeducate doctors, the public, the children... It will take time before parents begin to realize the extent to which they are being manipulated and profiteered upon, and the effects of all these drugs in these kids will be profound.
I feel strongly about this, but I'm so disenchanted with how America handles big pharma. It's a complete joke. Orange plastic and green paper is worth enough to violate the minds of our youth.
Edits: it's my phone keyboard!
For a significant portion of those with autism, the way their brain works is different than the median human but they are still basically fully functional human beings. My handy dictionary defines abnormal as "deviating from what is normal or usual, typically in a way that is undesirable or worrying." They match the first part of the definition, but the second part is very much open to question. Being different is not necessarily undesirable, nor worrying, nor an affliction, nor an illness.
Maybe these words seem loaded to self-diagnosed, asperger glorifying, "neurodivergent," ever-woke social justice armchair linguists like yourself.
I'd love for all of you to be squarely outside of the same diagnosis my little brother has.
I can't stress how much your "fully functioning" "open to question" "non-illness difference" version of autism deeply offends those who have been touched by real autism. Not, got me a job at Google savante autism. Not, I'm a nerd who remembers every episode of Naruto and no one likes me because I never shower so my excuse is my neurodivergence autism.
I long for the day when my brother's socially crippling mood swings and severe learning disability is no longer trapped under the same umbrella as a group of people who want to remove disability, retardation, or illness from a definition that has literally destroyed the lives of many individuals and families across the world.
I am disgusted by this optimistic view on autism. Championed by the most privileged of those with the disorder. You all fight a "stigma" for a mental disorder that you find has some "perks" as if the child thrashing his head against a wall and screaming at the top of his lungs because his brain registers every other sensation as pain and pain as pleasure doesn't even exist.
I have no sympathy for your entire assessment yet we agree on one thing, me maybe more so than you. The sooner we redefine autism into a multitude of different mental disorders, the better.
There are people who are non-verbal but sign or write perfectly well, what are they considered?
There are people who are very vocal but speak with an awkward cadence and have mood swings, are they "really autistic"?
There are people who are verbally eloquent but constantly participate in stim behavior and need constant observation to make sure they clothe, bathe, and feed themselves appropriately, do they have "real autism"?
There are people who may be able to hold down a part time job but cannot have a full time position because they have no capacity towards basic organizational skills necessary to have regular hours, do they have "real autism"?
There are people who are nonverbal and constantly stim and have severe learning disabilities but have enough organizational ability to hold full-time hours in, say, construction, because they're highly organized and don't have sensory problems with the work. Do they have "real autism"?
Autism is complicated because it is more a set of descriptions of related symptoms, in which each individual may have more or less of each symptom. From what I understand, autism can't be viewed as a "rating" of better or worse autism. Instead it should be viewed as a gradient of behaviors, individually are considered more or less functional.
I should also note that your language is highly dehumanizing to your bother, emphasizing on the impact of his autism on the people around him, and defining "real autism" not by symptoms but by how it affects non-autistic people. I don't believe this is much different than trying to direct a conversation about autism to making it a conversation about how hard it is to be a non-autistic and live with autistic people.
EDIT: Of note, I agree that it may be more pertinent to create different categories of autism based on the group of symptoms, but I'm not sure (and I don't know if there are studies) if they can be so easily teased apart as implied here.
This is sad. Is this the right way for me to speak about it? Your just jerking your internet boner to someone who is in pain.
Instead, read https://news.ycombinator.com/newsguidelines.html and follow this simple heuristic: if you have a substantive point to make, make it thoughtfully; if you don't, please don't comment until you do.
Moderation guidelines on 'Depression' posts here are consistent and progressive[0].
Other disorders are filled with comments that routinely disgrace medical research. I'd still like to see these threads as impartial as Depression.
Looking around this post, you addressed most of the issues, so I appreciate that.
I guess that's what the article is about, but it doesn't communicate the range as well as your post does. I wonder though, what's the purpose of having such an amorphous definition? The word becomes completely useless the more symptoms it describes. And the more symptoms it describes, the more unlikely it is that they're even at all related in terms of root cause and treatment. And I would think that results in a reduction in research progress.
> I agree that it may be more pertinent to create different categories of autism based on the group of symptoms
I know little about this topic, but this seems destined to fail and unnecessary. What's wrong with simply describing the actual symptoms? They're clear enough on their own. And boxing them up into a convenient single word diagnosis doesn't seem helpful at this stage of understanding.
For example:
> There are people who are non-verbal but sign or write perfectly well, what are they considered?
I would consider these as people who communicate well via non-verbal methods only.
> There are people who are very vocal but speak with an awkward cadence and have mood swings, are they "really autistic"?
Drop the autistic binary and just call them people with mood swings. Perhaps clarify that the mood swings can be disruptive and uncontrollable, or if that isn't the case, don't mention it at all because everybody has non-disruptive mood swings and deals with it. The awkward cadence doesn't even require mentioning if they can communicate effectively.
> There are people who are verbally eloquent but constantly participate in stim behavior and need constant observation to make sure they clothe, bathe, and feed themselves appropriately, do they have "real autism"?
The description stands on its own perfectly well without trying to determine if it's "autism". How does it help to make that distinction?
For the sake of making a pedantic and spurious semantic argument, you are willing to ignore the life-altering severity of jklinger410's brother's symptoms.
> I don't believe this is much different than trying to direct a conversation about autism to making it a conversation about how hard it is to be a non-autistic and live with autistic people.
Here you are not only ignoring the very severe consequences that autism has for jklinger410's brother, you try to dismiss jklinger410's evident distress and concern as self-serving.
No, please don't do that here. It's patronizing and, given the story we just heard, crosses into personal attack.
There's obviously deep personal experience behind your comment, and that commands respect, but you can't attack other users here, no matter how wrong they are. Please read https://news.ycombinator.com/newsguidelines.html and post civilly and substantively, or not at all.
I know it's not easy when one's struggles and wounds get suckerpunched by another comment. But we all need to remember that in a forum like this, where relational bandwidth is extremely limited, someone else's comment is constructed at least 50% out of our own interpretation of their words. Maybe a lot more than 50%. More here if anyone's interested: https://news.ycombinator.com/item?id=13102115.
To be glib, I wish there was a specific category of disorder for those people who reflect the tale of the Princess and the Pea when it comes to their 'neurodifferences'.
We all know what you and I meant, but the lingo in the academic side of all this has very distinct connotations, etc.
It's an unsolved issue, really.
My 5 yers old son wouldn't be able to attend a regular school without 3 years of expensive therapy and a dedicated tutor in class so the last thing I want is an excuse for my health insurance to deny assistance. The safety network a lot worse than what is available for dawn's without this PC BS.
As far as I know autism is classified as a developmental disorder.
The only real consensus is that "disease" does not describe traumatic injuries, e.g. if you break your ankle in a bike accident that isn't a disease. Note that many people conflate "disease" with "infectious disease", but the actual general category "disease" is quite broad and encompasses much more.
Anyway, it's arguing over semantics, like the perennial argument over whether Java parameters are passed by reference, or if their references are passed by value, or if they're passed by value, etc. See here: https://news.ycombinator.com/item?id=16896150
These js frameworks are getting weirder by the day.
It even fucked that up
Pharma of course wants to classify it as a mental disorder so then doctors will be allowed to prescribe medications.
I'm curious too what you mean by several dozen dimensions? I wonder if you mean the same thing as I do when I say "set of behaviours?"
And yes, the industrial complex with pharma has learned how to indoctrinate the medical and educational system, and fine-tuned their marketing/advertising. I get sick to my stomach when I go to the US and put TV on, the constant flood of ads for medications that are all fluff information being presented.
Don't take my personal opinion and make it accountable to a professional one. I'm not a doctor. But before doing finance I used to do some basic tutoring and teachers assistant stuff for a place filled with kids with "autism" and there was a very wide array of personalities there.
As per dimensionality, yes that's what I was saying. Each symptom or descriptor exists on its own spectrum, not the entire disorder/illness/whatever it is medically classified.
Anyways, yeah. I don't know what's an illness, what's a disorder, I don't particularly care what the medical industry uses to distinguish those two words, but I've spent a chunk of time working with autistic students, and its close to my heart.
A problem with taking the pharma approach to treatment of someone with autism is that, imaging being super hypersensitive to touch - the constant agitation from contact by clothing may make you constantly anxious right? So do you treat anxiety as a symptom of the sensitivity? It doesn't really make sense to do.
To make matters worse, I've had arguments with teachers about what constitutes being Autistic. My son was diagnosed with Autism when he was 3/4, and with therapy he's doing quite well, but he has his quirks. I have to remind people that just because he doesn't act the way their other children did who were diagnosed in the classroom, doesn't mean that he isn't on the spectrum, and I remind that they aren't qualified to officially determine his mental health. (And if they are, then we're going to have another discussion about performing a medical procedure on a child without the consent of their parent.)
30 years ago you could be what is called autistic now, and you would have probably been diagnosed Asperger's, or "mentally retarded" actual words of the diagnosis.
For the Asperger's you would probably have been sent on your way, with an 80% chance of divorce, a 20-80% depending on who you trust higher chance of suicide than your neurotypical peers, and zero help. If you were "retarded" you would go on disability and into a group home if your parents couldn't take care of you until you died.
With an autism diagnosis you get treatment, and if you get enough early enough, a 50% chance of being indistinguishable from your neurotypical peers by adulthood.
So, you are right. It is much more about money than scientific taxonomy.
But we made the rules.
If doctors are following them to get best outcomes for their patients, aren't they doing their jobs?
So it comes down to our medical system being a mess.
This is also one of the biggest reasons that control groups to test anything around autism are such a challenge and why there’s such a vacuum around treatments that leaves parents researching and searching for their own.
There potentially are other causes to these hyper- and hypo- sensitivities that I observe, though there are a few questions can that be asked to increase the odds that it's correct, and then there are diagnostics that can confirm.
How much an individual can be helped, if their developmental block can be unblocked, likely depends on when and how the block/disorder began - and that's where my interest lies.
What the article also didn't consider a widely used definition of the term high-functioning autism. It is often defined in terms of capacity to live autonomously at a level close to someone without autism with minimal support.
If we think of the condition in these terms I believe it's usefulness as a diagnosis becomes far more apparent. It would also allow for explicit recognition that the way people experience autism can significantly change when they are given support that nurtures independence and effective strategies to live.
I personally think that the people coming up with diagnostic frameworks could learn a lot from the The Capability Approach to well-being that has gained some prominence in recent philosophical discussions of the topic. Reading articles on diagnostics that do not seem to take into account the existence of such positions is frustrating because they seem to be missing an obvious way of being more effective in helping people as well as more descriptive.
Which is bad for everyone - support needs for people with autism is different than for other disorders, it fuels at least part of the increase in autism diagnoses since the 80s (and so the idiot antivaxxers)
I've never liked that statement. Mostly because it's not true; it's just a reminder to stop letting the utterances of others affect you so much.
Having said that, there's a point where we should set aside the worries of our language possibly being used to offend others and instead to just get on with it.
Perhaps this is one of those times?
I don't want to even think about the present.
Unfortunately autism cause research is governed by scientific dogma that prevents acknowledgement of the source of such rapid disastrous increase, this shows how scientific progress is controlled by corporations and government through funding and politics.
Just like the church controlled it in the middle ages.
In US schools, frequently to get help for a child like in a 504 plan, or IEP, you generally need to get a diagnosis. The Autism spectrum as it is defined at the moment is so wide and vast that you can take a couple traits that could be normal neurodiversity but apply an ASD diagnosis to it. This leads to further institutionalization, medications and therapists being shoved down kids throats, by pharmaceutical companies promising to solve symptoms and "save" parents kids.