
‘I Thought I Was Lazy’: The Invisible Struggle for Autistic Women (2017) - anotherevan
https://theestablishment.co/i-thought-i-was-lazy-the-invisible-day-to-day-struggle-for-autistic-women-6268515175f3/
======
kosma
Side note: executive functioning is greatly impaired by stress, anxiety, lack
of sleep, depression, etc. Those are very common in autistic people (due to
lack of support and an unfriendly environment, not because of autism itself),
making the symptoms much worse. Being unable to perform the basic planning &
tasks causes even more stress & anxiety. It's a vicious cycle. There's still a
huge blind spot in the way we approach autism, where we try to address the
symptoms without having a critical look at the person's environment.

(I'm autistic myself; and with proper support and environment I have very
little executive functioning problems. Without them, I struggle with the most
basic planning & tasks.)

~~~
nnq
> executive functioning is greatly impaired by stress, anxiety, lack of sleep,
> depression, etc.

This 1000 times over! Took me ages to realize that once you get "down" enough
(either depressive or overwork-burnout or scared-to-death-by-social-
anxieties), you _can 't think and plan right anymore_ so you just _sink lower
and lower down a spiral_ unless you get some outside help, stimuli and
feedback.

EF-malfunction is insidiuous because you just don't realize "how broken your
mind really is", you just make bad decision after bad decision on all planes
of life, health, finance, business, social etc. thinking you're one step away
from "finding what works for you".

 _But you can 't successfully find "what works for you" with a broken-EF-
brain, because you're mainly randomly sampling the possible space of behaviors
and attitudes and your chance to find a 'right' set of such things is
practically zero! Most things in the world don't 'work for you' and without
planning and discipline you can't navigate your life and mind to what works!_

~~~
coroxout
This sounds disturbingly familiar.

You try, but it ends badly repeatedly, sometimes unobtrusively, sometimes
suddenly and catastrophically and in public, until the memories of those times
plus fears of everyone's second-guessed reactions put you off doing anything;
you go so long without succeeding at planning and discipline that even trying
seems alien and scary; add the two together and you're well into "learned
helplessness" territory.

As you say, sampling the space of behaviours and getting apparently random,
mostly negative results back and wondering why your mental map of cause/effect
and effort/outcome makes no sense whatsoever.

So... what does one do, when in broken-EF state for so long?

~~~
nnq
I think that generally humans _cannot_ recover from being "in broken-EF state
for so long" _alone_ \- _that 's why we invented society, as horrible and
oppressive and stressing and annoying as society can be!_ Get connected to
"functional" and "positive" people. Be open and not defensive to any kind of
feedback from them - even if the feedback is very negative, treat it as
"technical feedback". Change/get a job/relationship. Seek therapy.

Even if the puzzle-solving-logical-thinking can still work with a broken
socio-emotional brain, the part of your mind that does planning, execution and
motivation/energy for action _needs well balanced social and emotional parts
aside to work properly._

Oh, and _do it fast..._ one can recover later too, as long as there's a will
there's a way etc., but... _you never recover that lost time when you could
've been productively solving important problems and positively connecting
with others!_

------
Mirioron
The behaviors described in the article remind me very strongly of ADHD. It
makes sense, because the article talked about Executive Function and people
have long suggested that a better name for ADHD would be Executive Function
Deficit Disorder (EFDD). Furthermore, ADHD and ASD seem to commonly occur
together:

>studies show that between 30 and 50% of individuals with ASD manifest ADHD
symptoms (particularly at pre-school age), and similarly, estimates suggest
two-thirds of individuals with ADHD show features of ASD (Davis and Kollins,
2012). [0]

Perhaps looking into treatments for ADHD could help?

[0]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/)

~~~
bitwize
ADHD is highly comorbid with autism. In some cases, an ADHD diagnosis may in
fact be autistic symptoms that the diagnosing clinician failed to recognize as
autism.

~~~
zaphirplane
That is interesting my impression (tv/random articles ) was autism was very
far away from the hyperactivity in ADHD

~~~
nnq
...there's ADHD-PI ("primarily inattentive") that lacks the highly visible
hyperactivity signs you find in TV-stereotipical ADHD.

It's even worse when masked by high-IQ and good coping behaviors, because when
life hits you hard with trouble, it flares up and gets amplified a zillion
time, and _you go from 'genius' to 'retarded' instantly!_

(Couple the frustration of this with some testosterone and some bad habits and
you can get pretty close to "stupid and violent criminal" levels and at that
point society loses all sympathy for you. I got close to this but stopped, but
I imagine that most of the clever-and-ultra-violent-criminals that fill up the
prisons worldwide are mostly "my kind of people" but they just lacked some
special "stabilizing component" that my brain happened to have and theirs
didn't.)

~~~
0815test
Most "clever and ultra violent" criminals by far are in fact sociopaths.
Sociopathy does correlate with a severe lack in executive function, but the
causal mechanism is very likely different from what we see in ADHD - it's
probably a sort of "callousness towards oneself" stemming from the sociopath's
exceedingly-poor emotional palette, that also leads to their callous behavior
and lack of empathy towards others.

------
officemonkey
Executive Functioning seems to be the key "worker bee" trait that is valued in
school and the workplace.

To be honest, in a different society (one that isn't focused on on-line
communication, extreme productivity, and always on connections), executive
functioning becomes a much less valued trait.

~~~
cheesymuffin
Luddism is quite the meme lately. Hope it dies soon.

~~~
CuriouslyC
Progress (in a lot of areas) hasn't been making people happier. In fact,
despite our material success, we appear to be less happy than our
predecessors.

What you're witnessing isn't fear of change, it's people questioning the idea
that "progress" is necessarily good.

~~~
badpun
> In fact, despite our material success, we appear to be less happy than our
> predecessors.

Which predecessors? We can't really tell how a medieval peasant felt, as they
didn't leave any articulate accounts. The accounts left later are generally
non-representative, as people who left them were privileged (they were not
illiterate). As for the more modern times, not more than 100 years ago
alcoholism (strongly correlated with depression) was so rampant that the US
banned alcohol sales altogether.

~~~
CuriouslyC
Specifically, I've seen data for post-WW2 America (at least until mid 70s)
being much happier than current.

~~~
badpun
1\. That was a period of super-high growth. Seeing positive change is one's
life is one of the greatest contributors to happiness (one easy way to tap
into this mechanism would be to have a terrible war that destroys everything,
and then just have get their lives on track again).

2\. Culture changed. In the past, people were told by society to not complain
about their mental state, whereas now people are opened up almost to the point
of being exhibitionistic. So, you cannot really compare reports from 50 years
ago with today's numbers.

------
kareninoverseas
I am probably somewhere on the spectrum.

I am probably also going to avoid actively going out and getting myself
diagnosed, since as this article suggests, public and professional perception
is such that it is extremely difficult to get someone to diagnose you, and
that once diagnosed, people might not take the diagnosis seriously anyway.

I think that simply being aware that my brain runs on a different set of
batteries--ones that make it easy for me to get hyperfocused on a task, and
also ones that make me prone to overthinking--is one of the more useful
outcomes of a formal diagnosis. Thankfully I can do that part by myself and
with my close friends and family.

Unfortunately I feel that autism presenting in the way described in the
article is simply too "loose" of a set of symptoms to have a formal diagnostic
criterion which doesn't create a great number of false positives. Perhaps
better time would be spent promoting awareness of the issue, as well as
finding ways to thrive with a neuro-atypical brain (this is kind of in line
with the article's message).

------
Justsignedup
Still find it impossible to find resources where to get tested as an adult.

~~~
kosma
I've been there; the irony is that the resource you're looking for is people.
Find & join your local autistic community (the actually autistic people, not
the moms or professionals); they know where to get a diagnosis.

It's ironic because it's an autism thing to consult websites, books, etc., but
not other people.

~~~
nostrebored
Choosing from the group of people who have been diagnosed to see who they can
recommend to examine you... you realize that this is the worst form of
selection bias, right?

~~~
kosma
The reality of seeking diagnosis as an adult is that you get endlessly
dismissed. I've been told I can't possibly be autistic because I can make eye
contact, can talk, drive a car, or get to the appointment by myself. I've been
misdiagnosed with and medicated for ADHD, personality disorders & OCD. The
blatant incompetence of mental health professionals and complete lack of
proper support and understanding drove me to the brink of suicide. So... yes,
it's a bit of a selection bias, but the other option of searching at random -
and getting hurt along the way - is just hell.

False positives are rare and inconsequential; false negatives destroy lives.
It's as simple as that.

------
oeuviz
What exactly makes people feel better when they know the source of a deficit,
even though there is no improvment of handling it? Diagnosing someting would
only make me feel better if I could treat for it.

~~~
TeMPOraL
One extra underappreciated benefit: you can tell the people saying you have a
moral deficiency to shut up.

(Sometimes not directly in this antagonistic way; just telling you have a
particular diagnosed condition can make the annoying people in your life
suddenly very compassionate.)

~~~
Grustaf
It is true that people become more compassionate, but that seems like a bit of
a fallacy.

-That guy is so abrupt and rude to people, I can’t stand him -Oh but he has ADHD -I see, then it’s ok

I don’t really see why flaws should become more acceptable if you give them a
scientific sounding name. In the end life is not easy for anyone, we all need
to struggle to remember everything, not lose our temper, stay positive etc.
Sure it is especially hard for some people but Up to a point that is just a
fact of life, it just means they need to work a bit harder.

Perhaps beyond a certain point you need to give people some slack, if they
have amnesia or something, but I’m not sure it makes sense to accept that
people “with ADHD” behave badly for example.

~~~
TeMPOraL
I think you may looking at the wrong disorder. ADHD in adults doesn't mean
someone is rude (no more than a normie). But at least some forms of ADHD will
make the person look like inherently lazy.

> _I don’t really see why flaws should become more acceptable if you give them
> a scientific sounding name._

It's not that they _should_ be, they just in practice are to most people, and
this can be a lifeline, especially if depression is involved.

Personally, I believe some "flaws" (aspects that make it problematic for one
to function) absolutely should be cut a lot of slack and approached from
another angle. Social pressure - the kind of telling you to stop having a
problem and get your shit together - works only for _some_ things, and can
make the issue worse in others (e.g. in depression, it not only won't help, it
can drive patients to suicide).

> _I’m not sure it makes sense to accept that people “with ADHD” behave badly
> for example_

Beyond the point that most don't "behave badly" but rather "behave
inconsistently if at all", it's a matter of what you mean by "accept". If
"accept to your social circle"? You can do whatever. But if you want to help
that person, you'll accept that these aspects are not effectively corrected by
social pressure because they're beyond the person's control.

See also, Scott Alexander's old post:

[https://www.lesswrong.com/posts/895quRDaK6gR2rM82/diseased-t...](https://www.lesswrong.com/posts/895quRDaK6gR2rM82/diseased-
thinking-dissolving-questions-about-disease)

Quoting the Summary section:

"People commonly debate whether social and mental conditions are real
diseases. This masquerades as a medical question, but its implications are
mainly social and ethical. We use the concept of disease to decide who gets
sympathy, who gets blame, and who gets treatment.

Instead of continuing the fruitless "disease" argument, we should address
these questions directly. Taking a determinist consequentialist position
allows us to do so more effectively. We should blame and stigmatize people for
conditions where blame and stigma are the most useful methods for curing or
preventing the condition, and we should allow patients to seek treatment
whenever it is available and effective."

~~~
Grustaf
First of all I'm not talking about depression, I'm talking about things like
"ADHD".

My point is that many people, especially parents, tend to accept a lot of bad
behaviour from people as soon as they mention some magical acronym.

If you accept that human neurology is a spectrum, then you realise that we all
have different starting points. The question then becomes how much should
society accommodate people with worse starting points, and I firmly believe
that we are too accepting, and a lot of that is because people put scientific
sounding names on their shortcomings.

------
anotherevan
Found the discourse about Executive Function in this article very interesting.
I want to understand this further.

------
achenatx
This article was incredibly interesting as I probably have this. My wife has
said that Im a bit odd and probably on the spectrum. I make eye contact
(though my wife says I often dont). If I stare into someones eyes it makes me
feel like Im falling and it makes it hard for me to think. I can be very
social but it is exhausting for me.

My coping strategies to reduce stress mainly revolve around reducing
commitments and things to track.

1) I dont keep any friends, my wife manages all social engagements, including
with my friends. The problem with friends is they require commitments and I
have no capability to meet them consistently.

2) I rarely read email, listen to voice messages, read slack messages, or
read/open mail. For whatever reason I get very stressed reading email and
listening to voice messages. This is quite frustrating to people around me but
they have accepted it. When my wife met me I had months of unopened mail. I
would typically pay each bill once every 3 months. I have about 6000 unread
messages between 3 email accounts. When I go on vacation and come back I
delete all my email. I havent listened to a voice message for a few years,
though they are accumulating.

I have adopted a philosophy that just because someone tries to contact me,
that it does not create an obligation for me to respond.

3) I make as few commitments as possible. I want to help people but I will
only do it in the moment. I make no promises about future ability to take on
tasks. I tend to work on only one thing at a time so I dont have to worry
about accidentally forgetting about something that is not what Im focused on.
I have whatever work project Im working on, whatever home project Im working
on, and then I attend meetings where I participate but dont take any action
items unless they are related to my project.

Ill often times buy some stuff for a project, my wife will put the items away,
and Ill totally forget that I needed to do that project until I accidentally
find the stuff in a cabinet.

4) I live from my calendar, but I still miss about 80% of non routine
appointments. If I have a non routine appointment I pretty much have to think
about it all day to avoid missing it so I try to schedule them in the morning
to reduce the amount of time I have to worry about them.

5) people have bad dreams about showing up to a class not knowing about a test
or final. I had this happen multiple times in school, including a class that I
failed because I thought I dropped it (I was able to get it changed to
incomplete so it didnt impact my GPA).

6) Most recently I have had a lot of stress worrying about properties that I
might own that I have forgotten about, so over the last few years I have been
selling all my real estate.

7) at work I have no capability to hold people accountable for more than one
or two things. I have adopted a strategy of only hiring people that I dont
have to micromanage. Over time the people I can work with demonstrate that we
can make an agreement to get certain things done and I can rely on them to do
it. I minimize the number of things that I have to track. On the plus side I
stay focused on the top priorities and dont sweat the small stuff.

8) I have accepted how I am. Every strength is a weakness and vice versa. I
apparently have very high self esteem so have never let it bother me that I am
so incompetent in this area. Every time I miss an appointment/commitment, it
reminds me to make less commitments.

------
i4t
naah, I wished. But I'm just lazy.

