
In search of a truce in the autism wars - wellokthen
https://www.spectrumnews.org/features/deep-dive/search-truce-autism-wars/
======
NeoBasilisk
I fully acknowledge that conditions affecting the brain will have a much
larger impact on one's identity. That much is obvious.

That being said, if I had the option to "correct" most of my personal atypical
genetic "variations," I would do so.

Colorblindness? Yep, I don't want that. Congenital flat feet? I don't need
those. IBS? No thanks. Hair loss starting at 17? Nope! Weird neurological
symptoms no doctor has ever been able to fully diagnose? I would pay almost
any amount of money to make those go away.

~~~
ekimekim
Everything you described is a physical trait, not something deeply intertwined
with your personality and identity.

For people with mild autism, a closer analogy would be an aspect of your
personality. Do you like to travel and explore new places? Imagine it was a
major aspect of your life, to the point that you'd get uncomfortable staying
in one place too long. How would you like it if someone told you that you
should be cured of that, and you'd be better off able to settle down and be
"normal"? Do you feel that you would still be _you_ after that kind of change?
If it helps, take the exact same question and reverse it. If you were told you
had to be "cured" to love travelling to that degree, would you consider that a
major change to your personality?

I'm purposely not speaking for severe autism here. I think the big problem
with this debate is people arguing past each other, both sides saying "autism"
and meaning wildly different things. I really wish they had different names.

~~~
klonderdonk
I’d argue that it’s only autism if it’s severe. During the 1980’s being
socially awkward wasn’t a clinical medical condition.

If you disrupted class in the 1980’s, you got taken out of general population,
and put into special education with a high ratio of teachers or aides, and
received a proximity of attention as needed, and that was your generalized
clinical marker for genuine problems. The consensus of the elementary grade
day-care center we call kindergarten through fifth grade in public schools
resolved who was incapable of participating at a reasonable level.

Meanwhile, being a weirdo with eccentricities and preferences wasn’t something
that demanded medication and diagnosis and labels and highly precise rules for
what’s normal and what’s not. You could be awkward. It wasn’t a big deal.

Now, that is no longer true. People are keeping score starting at five years
old, boxing kids into limited futures of medication and unrelenting demands
for strict behavioral protocols.

So, what changed? The schools. The doctors. The kids didn’t change. The adults
did. The trend was to demand more from children, and thus force them into
tighter constraints in adulthood. The trend was to try and force a society to
do more with less, and to weed out the weak.

Kids have to do homework in kindergarten, and that is bullshit. They shouldn’t
have homework until middle school, really. They should just be kids. They
shouldn’t have anxiety about grades when they’re little. They should be
permitted to exist as tiny little humans, getting a first look at a gigantic
world. Up until age ten, they should just be exposed to what it means to be a
person. By ten, their personality is developed, and with puberty around the
corner, a few short years to tighten up the basics would work, if public
schools were competent. Big if.

But, when it comes to “spectral autism” the premise is a joke. If you can
brush your teeth, comb your hair, tie your shoes, and iron and fold clothes
_but choose not to_ then you aren’t autistic. If you’re capable of working at
McDonald’s _but choose not to_ then you aren’t autistic. If you could
theoretically wait tables or tend a bar, as a capable server _but choose not
to_ then you aren’t autistic. If you can drive a car across town, you aren’t
autistic.

Ain’t no spectrum about it. Either it’s debilitating pathology or it isn’t.
People aren’t suffering from syndromes at unprecedented scales. The rules of
society changed in the late 90’s, and judgement is passed with greater
scrutiny than ever before.

~~~
empressplay
Sorry, but you can't simplify autism into just two camps like that.

My personal example is I was diagnosed with autism in the early 1980s. And it
really was warranted. I had serious difficulties with school – I had problems
speaking, dressing myself and tying my shoes (amongst other things). I got
into rages and fights. And my personal relationship skills with anyone outside
of my family were zero. But I also had a pretty decent IQ, and I learned to
manage the overstimulation and emotional tsunamis. Then I was able to survive.

There was also a high-IQ program in my school district, filled mostly with
people 'on the spectrum' (not generally as disadvantaged as myself though),
and the teachers involved with that helped me through school generally. But I
couldn't go to college, it was just too much.

Life since hasn't been easy but I've been able to work as a technician and
take care of myself. So I don't fit in either of your camps, and lots of other
autistics don't either.

~~~
_nalply
Thank you for your story. My younger son has been diagnosed with early
childhood autism. My wife and I think that it is not in a very strong form,
but our neuropaediatrician tells us that regular kindergarten would be too
much for him.

In our opinion the problem is that regular school is just not flexible enough
to accomodate children like him. So we are going to enrol him in a Montessori
school where he already knows people from the playgroup. The headmistress told
us that they accept him and they will employ a therapeutic education teacher
for him and two other childrens who are also special.

We will see how it works out.

------
cybersnowflake
Anyone who thinks autism is just a difference in personality that doesn't need
treatment is welcome to foot the bill for all the people including my nephew
who has difficulty talking and cannot live independently now and may very well
continue to be this way long after his parents pass away.

~~~
pjc50
There's a difference between the treatment that his caregivers require in
order to reduce their workload and manage their costs, and the treatment that
_he_ wants for managing his own condition.

(I appreciate that this is extremely difficult or impossible for the most
severely impaired people, but the original article involves people with autism
who are more articulate about their condition)

~~~
turbo_fart_box
As Yoda once said... "Only a sith deals in absolutes"

------
rlt
I think we need to accept that from this point forward some subset of the
internet will be outraged about literally everything, and try not to let it
have a disproportionate effect on our actions.

~~~
Nomentatus
Yes there's more noise - but there's more signal, too.

------
alexandercrohde
Well we need both.

I believe there already is research as to whether or not autism is best
understood as a medical condition (e.g. correlation with stress disorders,
physical disorders, etc).

There is no reason we can't acknowledge "Hey we should find out the
biological/environmental reason this is happening" while also not patronizing
the people whom it pertains to.

Same for any form of attention deficit, depression, other involuntary but
mostly benign deviances.

------
keenmaster
We’re probably all better off because some people have autism. I wouldn’t be
surprised if there’s an evolutionary explanation for its prevalence. However,
there are so many consequences to being “abnormal” that most neurotypicals
would refuse to be reincarnated as autistic if given the choice. If you have
autism, the traits conferred by the condition have become part of your
identity. You very well may not see it as a disease the way that some people
do. There’s no escaping society’s judgment though. Many social interactions
are worse, and if they’re not it’s because you’re expending energy to hide
yourself.

We must all become more accepting of each other and broaden the range of
“acceptable behavior.” I was at Starbucks yesterday and overheard 2 friends
dissecting everything they didn’t like about other people for over an hour.
The subjects of gossip didn’t seem to have wronged them in any way. Why is
this a normal thing in America? Do we have nothing better to do than judge
others?

~~~
komali2
>evolutionary explanation

Hmm... I hope someone more knowledgeable than me in biology jumps in to lend
their thought, but I'm extremely skeptical of takes like this - another one I
see a lot online is that somehow homosexuality has "evolutionary
explanations." It doesn't jive with my understanding of how evolution works.

Statements like that seem to imply there is some sort of intelligent force or
plan behind evolution, when instead it is "directed" by noise, not "reacting
to" noise.

As far as I know there's no way for evolution to "sprinkled a bit of autism"
across a population for an increased chance of population survival - I don't
see how such a mechanism could exist.

That's not to say that autism _doesn 't_ somehow improve society or
populations, maybe it does, I don't know. But I don't think we can point to
evolution as the mechanism.

~~~
fwip
Evolutionary pressures aren't as simple as "if it lowers your chance of
reproducing it's bad." You can read "The Selfish Gene" for more info.

Consider a gene that promotes compassion, selflessness and sharing. While it
may lower your individual fitness, groups with some individuals with this gene
may fare better as a whole.

Same as autism. For example, say autistic people see connections that other
people don't. Having a low rate of "different thinkers" is positive for the
group as a whole, even if the individuals may be disadvantaged in other ways.

~~~
therealforsen
Why would an individuals fertility be increased because the fertility of his
group is increased? The gene would not propagate unless he has more children
than his peers. There is no evidence of evolution by natural selection to
begin with, though.

~~~
bsder
If the group with the trait has on average a slightly higher reproduction rate
than a group without, that is sufficient.

This doesn't mean that any particular individual will have a higher rate
(although most will).

One hypothesis for the spread of Christianity in the Roman Empire is that
Christianity provided social services that improved reproductive rates by a
couple of percentage points. Maintain that over a particularly stressful
upheaval in the social order and you don't need many generations to
significantly outbreed your rivals.

~~~
robotresearcher
> Christianity provided social services that improved reproductive rates

Social services, and perhaps this might have some impact:

"In 1968, Pope Paul VI issued his landmark encyclical letter Humanae Vitae
(Latin, “Human Life”), which reemphasized the Church’s constant teaching that
it is always intrinsically wrong to use contraception to prevent new human
beings from coming into existence."

[https://www.catholic.com/tract/birth-
control](https://www.catholic.com/tract/birth-control)

------
taurath
Part of the problem is given the "spectrum" you can have people from wide
ranges (and their supporters, caregivers, detractors) all talking about their
truth and getting up in arms when people advocate solutions globally that
wouldn't apply on their side.

------
_Microft
There's an observation I made a while ago: pretty much all people that I heard
stating that they are "on the spectrum" were americans.

Why is that? I never checked but I would be surprised if the prevalence is
higher than in other western countries. So what is it? Is it better diagnosed
or just wrong (wrong diagnosis, self-diagnosis, pidgeonholing bc it's cool to
be non-average,...), or maybe there is an issue that people in Europe wouldn't
admit that they are on the spectrum and the prevalence is actually on the same
level as in the US?

~~~
rjf72
An acquaintance was involved in diagnosis of autism in US schools.

There are autistics that clearly have something severely wrong with them. They
flap their hand, frequently have extremely low IQs, and are not going to be
able to effectively participate in society in any meaningful way. You don't
need much any expertise to diagnose these people, other than to know that
autism exists. Her expertise came in diagnosing people whom I think many would
challenge the diagnosis of. It seemed anybody who exhibited less interest in
social interactions or engaged awkwardly, and had 'quirks' was designated as
being "on the spectrum."

There are radically different different rates of diagnosis in the US _by
state_. Though there are going to be some biases between states, this does
seem at least reasonably strong evidence against any sort of genetic,
environmental, or other factor. It's obvious that "autism", whatever it may be
be, does exist but I think the sharp differences in diagnostic rates are
probably simply down to the clinician choosing to diagnose (or not) people who
do not clearly exhibit as autistic. It'd be interesting to have 10 clinicians
each independently diagnose the same 1000 children. I expect you'd see some
fairly sharp differences between them. Go figure, another aspect of psychology
that's not replicable.

~~~
Nomentatus
As noted elsewhere here by others, the clinical definition of Autism has
radically changed recently, with Asperger's being folded in. This was done- in
a vain attempt to increase funding for children with Asperger's, IMHO.

~~~
TheOperator
The entire DSM-V definition of autism was transparently guided by political
concerns such as making sure nobody no longer qualified as disabled. Which
fundamentally makes it an expansion of the prior definition.

It's absolutely mind boggling how the bible of psychiatry can be so dominated
by politics and have very little actual connection to replicable science or
empirical data.

------
Causality1
The intersection of disability and identity has a huge number of consequences.
Some of them are beneficial, in the creation of communities, support
structures, and the like. Some of them are harmful, like the aggressively
anti-medicine activities of some communities who see the advance of science
threatening the future existence of their identity.

Autism is right on the edge of this phenomena, as it's a disorder that
arguably isn't a disorder and its harmful effects mostly attributable to
society's reaction. I would argue it still counts as a disorder in the same
way a hypothetical condition which prevented someone from speaking Spanish is
only harmful if the person lives in a certain type of culture (Spanish-
speaking) is still a disorder.

------
analognoise
I have kids. If I knew I was going to have an autistic one, I'd have aborted.

We only have to put up with this until there's a screening test. Then the
problem will take care of itself, like the way Tay-Sachs is disappearing.

~~~
whenchamenia
A stark reminder that not only do people who think like this exist, they
express it freely in public. While there is a discussion to be had around
eugenics, that attitude is not it.

~~~
biztos
Is it about eugenics or about abortion rights?

If women have a right to terminate a pregnancy within whatever time limits
society imposes, should society also impose motivation limits? That sounds
like a very slippery slope.

------
mcguire
Forty years or so ago, we decided that many of the people in total mental
institutions would have better lives outside of those institutions---there was
no need for them to be effectively incarcerated.

So we closed the institutions.

For the last forty years or so, we have had a growing problem of those with
severe mental illnesses becoming homeless. Progress?

~~~
shkkmo
How many of those homeless would choose to re-enter those institutions if they
were available?

Would you rather be homeless or in jail if given the choice?

Perhaps we can find a third option where safe and supportive communities are
provided that have various levels of minimal removal of agency.

~~~
Nomentatus
I was in government as a policy analyst in just this area when these changes
were happening, and fulsome promises of just such a third way were made
endlessly at the time. I knew perfectly well even then that these promises
were just hot air, because it was conservative governments were closing
institutions, merely to save money and reduce taxes. But people elect whoever
is willing to provide them with the lies that excuse the voter's most
preferred (cruel-but-cheap) options.

------
noodlesUK
Is this site unusable on mobile for other readers? I got a flash of the
content, then just a blank page, and then a modal. I don’t want to sign up for
a newsletter before I’ve even read an article... I’m glad reader mode exists
or otherwise I wouldn’t be able to use it at all.

------
SubiculumCode
Writing from the awards ceremony ballroom at INSAR, I just want to say that
this was a beautiful article that perfectly captured my own thoughts on the
matter as an ASD researcher.

------
bellerose
I think the conflict is the idea of the majority claiming what "normal" is for
everyone and the real problem being society is structured for this normal; not
designed for the non-standard persons. The persons who think they should prize
their difference are either deluding themselves of the negatives experienced
or are seldomly at an advantage than the majority classified with the same
illness. Maybe it's also needed to just get through a miserable day.

------
DoreenMichele
One issue that impacts this debate is the general trend that only severely
impaired people self identify as _disabled._ People who are able to get
adequate accommodation to function in life without such labels tend to
distance themselves from such labels.

My ex husband had severe handwriting issues. He was a cis het white male with
a serious career. He was able to use his favorite pen, among other things,
without needing a label -- like _dysgraphia_ \-- to qualify for accommodation.

Both of our sons were labeled as having _dysgraphia_. They needed the label to
get accommodation in public school.

We eventually pulled them out and homeschooled. I have formal diagnoses for
some of their issues in part because of the time they spent in school. But I
don't have formal labels for everything, in part because I no longer needed a
formal label to accommodate a thing while homeschooling.

Their dad did everything in his power to insist his problems were not like the
problems his children had. I saw this in other parents who had children with
labels.

I recently posted a thing to HN that got no traction. Some years ago,
Microsoft did a study designed to investigate limitations without using words
like _disabled_ or _handicapped._ It found that about 60% of respondents had
difficulties with day-to-day tasks if you just asked about tasks without using
stigmatizing labels, like _disabled_. In contrast, only 15% to 20% of people
self identify as _disabled._

Findings:

[https://web.archive.org/web/20090423084415/http://www.micros...](https://web.archive.org/web/20090423084415/http://www.microsoft.com:80/enable/research/workingage.aspx)

People who self identify as _disabled_ get very up in arms about "normal"
people using, for example, "Spoonie" language. So both those who self identify
as disabled and those who don't are equally touchy about such things. They
want some clear dividing line that may not genuinely exist.

I'm "Twice Exceptional." I'm gifted and disabled.

Various groups, such as gifted students or men able to claim _male privilege_
, are able to get a lot of accommodation for their preferences with a non
stigmatizing label. Their position of privilege gets them the best of both
worlds.

I strongly suspect that a lot of people use privilege to demand accommodation
for mild to moderate disabilities while side stepping the stigmatizing label
of "disabled."

I think there's a lot of other stuff going on, more than I'm going to fit into
a single comment. But, in a nutshell, if we lived in a world that more
consistently let you go with your personal preferences without needing a
justification, we wouldn't battle nearly so much over such labels.

(Yes, I know: Sometimes it's important for things to be done X way. But it
often really isn't and what happens is privileged people wind up free to do
whatever and underprivileged people get their lives turned upside down on
silly excuses, basically.)

~~~
pjc50
Can I just say that this is the most interesting thing I've read on HN all
week? Thankyou for writing it.

You've reminded me of all the "kitchen gadgets" that are mocked for
uselessness when really they're accomodation devices, but for marketing
purposes they absolutely cannot be described as that.

------
Madmallard
Theres loads of research linking autism with metabolic dysfunction. It is not
a state of health.

~~~
geofft
Hm, [https://www.spectrumnews.org/news/clinical-research-
metaboli...](https://www.spectrumnews.org/news/clinical-research-metabolic-
disorders-rare-in-autism/) argues otherwise.

Also, would you say that I'm not in a state of health because I'm allergic to
nuts?

~~~
PeterisP
> would you say that I'm not in a state of health because I'm allergic to
> nuts?

Yes, definitely - wouldn't you? It's a flawed behavior of the body that causes
disadvantages, for some people it's life threatening, so it's definitely a
health issue; If that would be easily and permanently curable without side
effects, then it would and should be cured en masse as a common healthcare
procedure.

~~~
geofft
I agree with that description, but is the conclusion that I'm permanently
unhealthy? And is that a useful definition—isn't everyone permanently
unhealthy in one way or another?

~~~
PeterisP
While almost no one has perfect health, a key factor there is the ability to
correct the issues and the cost/benefit of doing so.

It's not worth mourning about a nut allergy because (as far as I understand)
there's not much that we can do about it, so one might as well as just accept
it as the way things are. However, if it _could_ be easily and permanently
curable without side effects, then not doing so would be an intentional choice
to remain permanently unhealthy.

However, for the original discussion about autism, it may be relevant to
consider the analogies (and differences) to the hotly debated issue regarding
cochlear implants for deaf children. Both sides have a lot to say and I'm
probably mangling their opinions, but in essence there's a situation where
certain types of deafness can be "fixed" (albeit imperfectly) by cochlear
implants; but many in the Deaf community don't want to be "fixed" to become
more like hearing people; and in order for hearing/speech centers to develop
properly the procedure needs to be done in childhood as early as possible,
before they can decide for themselves. So there's a rather emotional debate on
whether deaf kids should "be fixed" if they parents prefer that they would not
(because e.g. they want their kids to be a full part of the Deaf community,
using ASL instead of spoken English as their native language) - and if _that_
raises a lot of questions regarding what should be considered states of
permanent unhealth, then the mental issues would be even more contestable and
contested.

------
DiseasedBadger
There is no genuine debate to be had. No one who has the ability to not be
autistic, would choose to be.

This is yet another example of how our toxic modern culture turns everything
into an "identity". Some people are less healthy than others. That's
potentially sad, potentially not a big deal.

Neither way is there any excuse for this faketroversy.

~~~
gjm11
It's completely untrue that "no one who has the ability to not be autistic,
would choose to be"; plenty of autistic people are happy to be the way they
are and would not want to change.

(Pedantic note 1: If you're super-duper-literal about what you said, and take
it to refer only to people who _actually have_ the ability not to autistic,
rather than speculating on what would happen if autistic people _had_ the
ability not to be, then it might be true. Though I'd guess it still isn't; I
bet there are some not-autistic people who would like to be slightly
autistic.)

(Pedantic note 2: I suppose it's _possible_ , for all I know, that autistic
people who say they wouldn't want to be "neurotypical" are actually lying. But
I don't see any reason to think they are.)

~~~
umvi
> plenty of autistic people are happy to be the way they are and would not
> want to change.

How can you objectively claim to prefer autism over non-autism if you've never
experienced the latter?

It's like me being completely content with my mechanical Ford Mustang and
refusing to switch to a computerized car on the grounds that I'm happy with my
Mustang and it's impossible for me to imagine what driving a computerized car
could be like. I've never _tried_ a computerized car that has lane assist and
anti-lock brakes, mind you, but I'm just afraid I would like it less than my
trusty old Mustang I've used my whole life.

~~~
fwip
How can you objectively claim to prefer non-autism over autism?

~~~
umvi
I can't; the only way to have objective preference is by experiencing both for
the same period of time before choosing

~~~
zAy0LfpBZLC8mAC
Which is relevant to what people would choose, lacking that experience, how
exactly? Because that was the topic being discussed ...

~~~
umvi
Presumably in this hypothetical situation where you can "cure" autism, you can
also "uncure" autism.

My point is that austistic people who choose to deliberately stay autistic
without experiencing what it is like to be non-autistic are making a biased
choice (likely rooted in fear of the unknown).

The objective course of action is to experience being non-autistic for a few
years before deciding whether you actually like being autistic...

~~~
zAy0LfpBZLC8mAC
> Presumably in this hypothetical situation where you can "cure" autism, you
> can also "uncure" autism.

For one, I don't see how that's justified. There are plenty of diseases we
can't uncure?!

And then, the choice to try out non-autism is already a decision to be non-
autistic, even if only temporarily.

> My point is that austistic people who choose to deliberately stay autistic
> without experiencing what it is like to be non-autistic are making a biased
> choice (likely rooted in fear of the unknown).

Well, yes, obviously. And how is that relevant, when noone claimed they were
making an unbiased decision?

> The objective course of action is to experience being on-autistic for a few
> years before deciding whether you want to "uncure" yourself.

More subjective experience doesn't make the decision objective, just better
informed. And in any case, it's still besides the point, because noone was
making claims about how objective or how informed the decision is?

When someone says "Plenty of people don't drink alcohol, and are happy with
it, and have no interest in trying alcohol", it's simply a non-sequitur to
respond "But the objective course of action is to experience drinking alcohol
for a few years." Yes, the decision would be better-informed, but being better
informed is not a prerequisie for being happy with what you are doing, nor
does the fact that you could try drinking alcohol have any relevance to the
assertion that some people just aren't interested.

