
Is It Time to Give Up on a Single Diagnostic Label for Autism? - DanBC
https://blogs.scientificamerican.com/observations/is-it-time-to-give-up-on-a-single-diagnostic-label-for-autism/
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jrq
It was time ten years ago.

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!

~~~
kosma
Autism is not a mental illness. Please do not spread misinformation.

~~~
ythn
Its a general term people use to mean "not normal". What else should we call
it? Everyone loves to play semantics and politics when it comes to
categorising mental abnormalities. No one wants their affliction to be
considered an "illness"

~~~
colomon
Basically you're unleashing a horde of loaded words in an effort to explain
why the first loaded word choice was appropriate.

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.

~~~
jklinger410
People like you are one of the biggest reasons autism is too broad of a term.

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.

~~~
SolaceQuantum
Calling people who have autism to not have "real autism" is a
misinterpretation of the many behaviors associated with autism and why it may
be considered neurodivergence or a developmental illness instead.

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.

~~~
mannykannot
> From what I understand, autism can't be viewed as a "rating" of better or
> worse autism.

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.

~~~
SolaceQuantum
He isn’t speaking for his brother; he is only speaking for his own pain in
expressing frustration of how he has been impacted by “real autism”.

~~~
mannykannot
You should give consideration to the distinct possibility that the pain and
frustration arises from his love for his brother.

------
stctgion
In the UK they moved to a single diagnosis in 2013. Before this it was autism
and Asperger's. They found however that diagnosing people with the less
extreme condition meant that they received less help from schools and local
government.

~~~
fjsolwmv
This is 99% the answer. Politics (government funding, and also private
insurance funding) is the tail wagging the dog. Medical community is assigning
labels not based on relevant scientific taxonomy, but based on what opens
purse strings. Until politics starts to respect science and constituents,
doctors and parents and teachers have no choice but twist the scientific
language in order to obtain the funding they need to care for their kids.

~~~
UtilityDave
It is partly what "opens the purse strings" but also what makes a given
diagnostic and treatment protocol available.

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.

~~~
JonathanMerklin
Curious, where are you pulling that "80% chance of divorce" statistic from?

------
brightball
It’s been time to do that for a while. The problem is without a good system
for measurable diagnosis among physiology or symtoms, it’s complicated.

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.

~~~
loceng
The issue is that most doctors aren't good observers or critical thinkers,
they're selected for memorization skills and not critical thinking. Of course
people working on the field specifically of autism will have more experience
and be able to spot the obvious cases, however I regularly come across people
who have hyper- or hypo-sensitivities which are because of developmental
blocks/disorder as well - and people won't even realize how much of an impact
this is actually having on their whole system.

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.

------
neom
For me, my autism is neither a disability nor a mental illness. Although it
can be overwhelming to a degree, it seems to be a considerably different way
of perceiving the world. I don't believe I'd be able to cope with too much
more of it, either.

~~~
fjsolwmv
Is _any_ mental illness mental illness under this term? Depression, bipolar,
schizophrenia, are all different ways of perceiving the world.

~~~
neom
To me, and I'm not a professional anything, illness is when a bodily function
is not preforming as intended. I believe I'm functioning as intended, just
that society is not geared for how I function. For me it's ok, I get by, for
others I'm sure reality must feel like insanity. I'm grateful for what I am,
and I'm sad for people who do not get to experience being grateful for what
they are.

~~~
lucidone
I have a close friend who is autistic and he teaches me something every time I
spend time with him, and I really enjoy his company. Enough so that I always
grab drinks with him when I head back home for the holidays. I want to tell
you that you likely have the same effect on those around you.

------
glomph
I found this article slightly frustrating in the way it described high-
functioning autism. The term is normally not used to describe higher than
average IQ in the general population but higher than the average amongst
people with autism. If that is made explicit then the usefulness of the term
seems more obvious.

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.

[https://plato.stanford.edu/entries/capability-
approach/](https://plato.stanford.edu/entries/capability-approach/)

------
olliej
Overdiagnosis of autism seems to be a very American thing - basically getting
support (financial or educational) is highly dependent on specific diagnosis,
so previously someone with delayed learning would have been recognized as
delayed learning, but now people have realized the most effective way to get
support is to find a dr who will diagnose autism.

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)

------
socceroos
Sticks and stones may break my bones, but names will never hurt me.

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?

------
empath75
Probably also for depression and attention deficit disorder as well.

------
givan
Autism skyrocketed, we had 1 in 59 kids in 2014 in the us.
[https://www.cdc.gov/ncbddd/autism/data.html](https://www.cdc.gov/ncbddd/autism/data.html)

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.

~~~
taurath
Autism diagnoses skyrocketed - an important distinction.

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.

