
It all made sense when we found out we were autistic - pbhowmic
http://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism
======
dkarl
I'm curious why people find the diagnosis to be so important. I can't at all
imagine identifying with the sentiment, "Nothing is wrong with me, I’m just
autistic," as one of the women in the article says. When I go to a party with
my girlfriend, I want to come off well, if only for her sake, and I would like
to have some interesting conversations, and maybe (very optimistically) to
meet someone I can share an interest with, since some interests can only be
pursued in a very limited way by one's self. I would like to become closer to
people I find interesting or admirable. I would like to be able to offer
people the pleasure and comfort of a friendly greeting and conversation. These
are things I find very difficult, and I can't imagine a diagnosis erasing my
regret at mostly failing to do these things, or eliminating my desire to
achieve just a little bit more success at them.

My therapist suggested that Aspergers might help, along with other factors we
had already identified, explain a lot of my childhood experiences, so I asked
her if a diagnosis would give me a new way to work on my current issues. She
said no, given my current status, it wouldn't affect our approach, just our
retrospective understanding. Given that, I didn't quite care enough to spend
time and money meeting with a specialist who could verify her suspicions. I
might do it someday just out of curiosity, but I can't imagine it giving me
any sense of relief or validation. My deficiencies are my deficiencies, with
or without a diagnosis. Too often someone who encounters me leaves thinking I
don't like them, and I know their natural tendency will be to fill in the
reason with something they don't like about themselves or something about
themselves that people harbor prejudice against. I hate that, and a diagnosis
won't stop it from happening. A diagnosis won't make people think of me when
they're planning something. A diagnosis won't give me the right words when
someone has lost a loved one. I've put in a lot of work and made substantial
improvement, and unless a diagnosis can help me progress further or faster, it
just doesn't mean anything to me.

~~~
kitanata
I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in
2001. I struggled all throughout middle-school high-school and even some
college to understand other people and to make friends. Middle school was the
worst, because I was endlessly bullied, very depressed, extremely lonely, and
constantly told that I was "weird".

Before my diagnosis I remember breaking down in my school's counselors office
begging her to teach me how to make a friend. It was a lottery based "art
school" because my 5th grade teacher thought I would be a good fit there
because that's where other "weird" kids were. I hated art, but I went anyway
on the advice of my mother. By breaking down, of course, I mean crying
hysterically just trying to reach someone to tell me how I could not be doomed
to a life of bullying and loneliness. She told me "The best way to make
friends is to be a friend." That was her best advice. It was completely
useless to me. I thought "What does it mean to be a friend?".

During that time I saw countless psycologists, and was diagnosed with ADHD
(wrongly), major depressive disorder (wrongly), and bi-polar disorder
(wrongly). I was doped up on so many experimental medications that I have
completely forgotten my life from the ages of 12-17. At some point my mother
gave up on me and put me in foster care for 2 years. I spent 9 months of that
time in jail for doing some pretty scary things. Namely burning down a 3000
gallon trash can (which I did for attention), and my attempt to commit suicide
by jumping in front of a semi, which failed and got the police called on me. I
tried to commit suicide by cop, which also failed.

I ended up in a couple psych wards. Once at an awful, horrible place called
Fox Run, a few others in between, and then finally at a place called Parmadale
in Cleveland, Ohio. At Fox Run, the doctor's decided to do an experiment and
take me off all the drugs I was on so that I would "reset" and so he could
properly diagnose me. He didn't get the chance but he told my social workers
that he was concerned that I might be autistic and misdiagnosed. So when I
arrived at Parmadale they disregarded my entire history, and evaluated me as I
presented there. I was diagnosed with Autism 2 months in.

Later my brain would be used in a series of studies at the OSU Medical Center
on diagnosis through brain scans. I recently found out these scans are in
several published papers on the subject.

Anyway, Parmadale focused on rebuilding my self-esteem and focused on teaching
me social skills, practices and techniques to overcome my disability. I
haven't taken any medication since I left that facility at 16 years old. I
went onto graduate high school (with honors), and I have a degree in Video
Game Design and Development from Fullsail University in Florida. I've worked
in software and startups for years, doing everything from interactive media,
to web development, to machine learning, to whatever is next. It's taken me
several years of practice, but most people I know both personally and
professionally now have no idea that I'm autistic. I fake it very well.
Occasionally I meet people who tell me later that they had no idea.

Things could have gone very differently without a diagnosis. I am certain that
without a diagnosis I would have ended up dead or in prison for a very long
time.

So yeah, diagnoses is very important. For many people with this condition it
can be life and death. For me it was at least. I'd rather have a million
people who are misdiagnosed or just awkward and misrepresenting themselves as
having autism than a single unfortunate teenager out there struggling with
this disorder and having no idea how to overcome it. Awareness is everything.

As an autistic person it makes me concerned to hear others gatekeeping on this
issue or seeing it as the new ADHD. That might be the case, but before you
disregard it, please think of that 16 year old kid acting out, lonely,
depressed and misdiagnosed because no-one seems to know what's wrong with him.
Then ask yourself whether or not that diagnosis and label is important and
could help.

To fix any problem, you must first understand what the problem is.

My name is Raymond Chandler III and I am Autistic.

~~~
adrianratnapala
You are right about the importance of understanding problems.

But in your story, a lot of the problems came from people giving you (wrong)
diagnoses. dkarl is saying what works for him is just working directly on the
constellation of traits he has without looking for a diagnosis. True, things
got much better for you when you got the _right_ diagnosis of autism. But as
i14ng points out below, autism is "just" a name for a for a constellation of
traits similar to dkarl's.

It sounds like your case is a lot worse than dkarl's so I believe you that
naming the syndrome was a good thing. But overall, would you have been better
or worse off if society just made fewer psych diagnoses and you never had the
right or the wrong ones, but people just helped you work directly on your
traits?

~~~
kitanata
> But overall, would you have been better or worse off if society just made
> fewer psych diagnoses and you never had the right or the wrong ones, but
> people just helped you work directly on your traits?

I don't think it's worth speculating on the past, on whether one approach
would have been generally better than the other. Hindsight is 20/20, right?

I do believe in one aspect of the argument, and that is one of empathy. If you
see someone struggling with something, or they are exhibiting a "trait" that
you think isn't normal, then finding a way to help them is a worthy goal.

I think the problem here is trying to understand and define what is "normal"
and what "traits" are worth looking out for. This is where things start to
devolve in philosophical disagreements. As other commenters have said in the
thread, there is a difference between being socially shy, having extreme
social anxiety, and being autistic. Even in the realm of the autism spectrum
you have different issues and presentations to address. When is something
actually a problem? How do you identify the problem, and then how do you
address that problem?

I don't think it's as black and white as we want to believe. I think labels
and diagnosis can help, and they can hurt. The most important thing is to be
aware, and to have empathy and compassion for others.

------
lisper
Aspergers was not a thing when I was growing up in the 70s so I was never
formally diagnosed, but I'm pretty sure I'm on the spectrum, and the result
was a pretty painful childhood. I managed to drag myself out of it and give
myself an education in social skills, and nowadays you'd never guess that I'm
Aspie (my wife still doesn't believe me, but I think she's an undiagnosed
Aspie herself). Even to this day there are a lot of things that "normal"
people do that are utterly foreign to me, like going to clubs or watching
sports on TV. My idea of a good time is reading up on quantum mechanics or the
ordinal hierarchy. I think mild Aspergers is a lot more common than most
people think even today because it is possible to hide it completely, and
there's a lot of societal pressure to do just that.

[UPDATE] A lot of reply comments are of the form: what you have described here
is not Aspergers, it's just normal growing up. Well, yeah, it's not so easy to
give a complete description of my situation in an HN comment, and I'm not sure
I'd be willing to do it even if I could. I'm not particularly proud of the
person I used to be. But I will tell you this: in retrospect, when I was a
kid, I was completely oblivious to the fact that my peers were agents in their
own right, with thoughts and preferences and hopes and dreams that might be
different from my own. That, I am now given to understand, is the hallmark of
autism spectrum disorders. But I don't think it matters whether or not I
"actually" had/have Aspergers. What matters is that because I was clueless, I
behaved obnoxiously (not realizing that I was doing so) and as a result of
that I had very few friends. It was intensely painful, and it took many years
of concerted effort to change my situation, but I ultimately managed to do it.
_That_ is really what I want to convey: whether or not it was abnormal, it
hurt, but I was able to make it better. And if I could do it, so can you,
regardless of what label we choose to attach to our conditions.

~~~
olavk
Being interested in science does not mean you have Aspergers. Neither does
_not_ having certain interests like sports or clubbing. Only a minority go to
clubs anyway, so I don't even see why they are the "normal"? (I'm not
disputing your self-diagnosis here, just pointing out choice of hobbies have
nothing to do with it.)

~~~
bluetomcat
I have never been formally diagnosed because autism is still not a thing in
Eastern Europe, but the following self-assessment leads me to believe I am:

1\. Constant fear of losing my belongings like keys, which leads me to check
what's in my pocket every minute or two while I'm walking.

2\. Overly obsessive about following a particular "ritual" for everyday stuff
like washing my car or cleaning the house. Every small spot needs to be
covered every time, even if it was previously clean. Otherwise I feel uneasy
for completely irrational reasons.

3\. Great confusion and anxiety when things in my job or everyday life cannot
be done according to my carefully crafted plan.

~~~
cacrawford
I find it pretty common for people to tell me I'm not on the spectrum when I
reveal it, as if in 5 minutes they have a better handle on me than I do. It's
helped me understand just how annoying "mansplaining" can be (even when it's
done by a woman.)

~~~
dwild
> I have never been formally diagnosed

That's important though... you can feel like you have something but actually
have something pretty different. I understand that it must be pretty annoying
for you if you are actually diagnosed but sadly, believing an internet
diagnostic is too often a pretty bad decision.

~~~
TomK32
it depends on the experience of the diagnostican then, and all they can work
with is what you are willing and able to tell them, no?

------
isolli
My wife and I believe our daughter has a (thankfully) mild form of autism. It
took us a while, but when the realization came, it was a relief, as we stopped
being angry at her and at ourselves: 1) hopefully we did not do anything wrong
to cause this, and 2) it is not our daughter's fault that she behaves this
way.

We did not get a specific diagnostic, and I'm not sure it's worth seeking one.
As far as I know, the diagnostic is not scientific, so I wouldn't consider it
a strong validation of what we're experiencing. However, a diagnostic might
make it easier to explain to our family and friends what is going on, and talk
about it.

Any thoughts?

~~~
Chriky
I mean, IANAD but I would definitely get a professional diagnosis before
acting on the assumption my child has a specific medical condition...?

~~~
lainga
It sounds like the parent is talking about validation, not specific
psychiatric action. I think it should be OK as long as they don't present
their child as professionally diagnosed as such.

~~~
isolli
Thanks. We're only acting on it insofar as we read about it and try to find
practical ways to deal with it. We're not going to medicate her! And when we
discuss the topic, we always start with: "We believe that..."

~~~
BadCookie
It's not standard to medicate for autism, FYI. The standard recommendation is
therapy (Applied Behavioral Analysis, occupational therapy, and speech therapy
are most common). One benefit of a diagnosis is that often your insurance
company will cover more therapy.

The right next step is to get an actual diagnosis, in my opinion. You might be
off-base in your suspicions, or it may turn out that your child is more
affected than you suspect.

~~~
DanBC
> It's not standard to medicate for autism, FYI

Autistic people are routinely over-medicated, and that over medication one
reason for the difference in life-span for autistic people.

~~~
cryptonector
After diagnosis? There are no drugs specifically indicated for treating ASD.
You might find people on the spectrum getting prescribed ADHD meds, say, but I
understand that's more of the exception nowadays.

------
TomK32
Haven't got a diagnosis myself but I tick a lot of boxes for mild autism and a
few articles I read about it 5 years ago (31 at that time) made me realize
it's a pretty good explanation for me. I'm not surprised that women are
diagnosed less, they are integrated into the social web of family and friends
a lot better and from early on. I'm pretty sure I didn't have even a 10th of
the social interactions my little daughter has. If only I could remember more
than 10 things from my childhood.

On quote from the article that I find heartbreaking is this one:

> I’ve watched people carefully and studied psychology to degree level to get
> me to the point where I can now act quite naturally.

Acting to appear normal, I can do this for a few hours (assuming they serve a
social lubricant ;), but put me in a room with small kids, parents and bad
acoustic and I need to get out after an hour. My wife's not helping in such
situations, actually is embarrassed by my reserved behaviour and inability to
connect. She knows that I think I'm an aspie but held it against me so often,
that I wish I hadn't told her. She even complains about me not looking in her
eyes when she talks, despite know that I'm not wired to do that. On the other
hand, no one before pointed that out to me.

What's the point of a diagnosis at 36 when all I'd do with it is show it
people who wouldn't believe me otherwise?

~~~
cryptonector
If you're a high-functioning adult, a diagnosis won't do much good -- you've
already figured out what you needed to at least unconsciously. But suppose now
that you have children. And one of your children is on the spectrum. If you
know what to look for, you might save them and yourself a ton of stress.

~~~
TomK32
Already have one, perfect child, active, social, caring, chatty, curious,
definitely nowhere near the spectrum. Which is a relief because on her
mother's side there's a brother on the spectrum. But I'm able to spend a lot
of time with my little family, so that makes it easy for me to grow with our
child, make sure she doesn't feel rejected because I'm a weird guy.

------
drefanzor
I understand they have a disorder, and yeah, it's "not that bad", for SOME.
But come on. My son has autism. He is 13, and still cannot speak. He has to
have 24 hour care. I understand that autism is a spectrum, but realize that
what they're talking about here is much different. It's like saying someone
has a paralyzed pinky versus a being a quadriplegic.

~~~
cryptonector
I've only known people on the extremes of the spectrum. I don't know anyone
who is clearly "in the middle". I do wonder if it is a spectrum or just two
different spectra, because I agree that the extremes are not really
comparable. My heart goes out to you. I hope your son catches up eventually.

------
blauditore
Since the causes of autism are not really understood, it's defined and
diagnosed based on behavior, or symptoms, if you will. Thus, is there an
actual qualitative difference between "shy, socially anxious/clumsy" and
autistic, except for the extent of those properties?

~~~
gowld
It's very easy to diagnose someone with extreme autism, just as it's easy to
diagnose someone with extreme dwarfism. It's blurrier when you get to mild
autism (and mild shortness) where there is less visible impairment, less
obvious behavior, and often visible benefits.

~~~
TomK32
I'm 1.93 and my knees make trouble. can you give me a diagnosis? :D

I'm reading a book at the moment, in german, "Ich liebe einen Asperger" and
even proper autism was barely recognized by people working with kids 15yrs
ago: "... but it couldn't be Autism!?" is one quote from an educator about the
family's most autistic child. Things probably haven't changed that much.

One other thing, even though it is exhausting, kids on the spectrum try to
mimic others, act normal etc just to get a good feedback. In the book it took
months until the psychologist got through the kid's defenses and was certain
about the diagnosis. It's sad really, so much frustration the family describe
that could have been prevented.

~~~
gowld
"try to mimic others, act normal" is mild-to-moderate autism, and leads to
challenges like not realizing that it's so much harder (in mental effort) for
one person to perform behaviors that are so easy for most people.

Severe autism has symptoms like nonverbality (unless treated with years of
intensive communication therapy), extreme repetitive behaviors (tapping,
bouncing, etc), and freakouts/meltdowns in response to unexpected situations
and sensory inputs, of the sort of intensity and sensitivity well beyond what
you'd see in the average person over the age of about 7years.

In years past people might not have been able to pinpoint "autism", but
disregarding the minor important of the label, it was still easy to see a lot
of what was going on with the person with the condition. (Effective
_treatment_ is of course much harder than mere diagnosis.)

------
gaspoweredcat
Although im male i also had a late diagnosis (33) which brought about several
"oh now that makes sense" moments. im not really surprised i wasnt diagnosed,
i grew up in a tiny middle of nowhere village in the 80s, autism was pretty
much unheard of i was just the "problem kid" of the village.

ive also always had various quirks that id always previously just put down to
me being "weird" the most pronounced of these is that i am a vegetarian,
however not by choice, i just cant see meat as edible, i can and have
killed/cleaned/cooked things before so that doesnt bother me, i wish i could
change it but i simply cant.

its not all bad though, yes i lack empathy and im socially awkward to say the
least but i also have an excellent memory and a solid affinity for electronics
and IT, i didnt need to be taught, ive always just sort of known.

so while a diagnosis didnt change anything about my life it did answer some
questions about why i am who i am

------
jeandejean
"Five times as many males as females are diagnosed", but the problem is of
course that women are not diagnosed enough... What about there is a big
problem in our society that make males more prone to autism that we should fix
first?

That article seems to be political rather than informative to me.

~~~
fhayde
I'm inclined to agree.

Perhaps I'm just getting old and cynical but it seems like a lot of people
consider it a badge of honor to be diagnosed with some sort of neuro/psycho
disability. Granted, that's not a terrible thing per se, because if nothing
else, it means there's a significant shift away from the stigmatizing
perception of the past. I just have a hard time accepting the celebratory
nature of things like this. Similar to the body positivity movement, which
itself is a healthy shift towards acceptance and responsibility, there's
always a fringe element who seem to romanticize and glorify something. I
personally believe it's because many people want to feel included in
"something", and that's fine, I don't have a problem with that. I just get
grumpy when the initial context goes from understanding the way a disorder can
impact your life and raising awareness to "let's make an exclusive group to
carve out a little island only me and other special people like me can hang
out on". It feels a lot like the reason and purpose are hijacked and
unfortunately the message gets lost and tainted, creating more of a backlash
than anything else. I don't have a problem with exclusionary groups at all
either; my issue is when they use the growing awareness of something else to
piggyback off of. I dunno, that's my $0.02 that no one asked for lol.

------
anotherevan
Both my kids are aspie. My son was diagnosed when he was seven because of some
speech delay when he was younger and social awkwardness.

My daughter was diagnosed at sixteen after two years of missed school and
barely leaving the house due to incredibly high anxiety. Oh, and the first
time she was assessed eighteen months prior she was only "borderline" aspie
even though in retrospect she has been effected much more profoundly. (She
also had a similar speech delay when she was younger too, btw.)

We need to get a lot better at recognising the condition in girls, as we have
with boys.

§

If you are wanting to know more about autism in all its flavours, google for
just about anything by Tony Attwood. In more recent years he has been
concentrating more on autism in women, so adding "women" to your search terms
will surface specific material in that regard.

------
justgottasay3
I think this is an interesting intersection with the recent episode of Full
Frontal... in which the host points out that women appear to be under-served
by Medicine.

Are we failing half the population so completely?

------
amyjess
I have a lingering suspicion that a good amount of monks during the middle
ages had some form of ASD. Monastic life involved repetitive activities that
are usually enjoyed by people with ASD, and monks often had intellectual
hobbies that made them probably the closest thing to nerds that existed in the
middle ages, which is linked to ASD.

------
morgtheborg
I wonder sometimes if I had Aspergers and just effectively trained myself out
of it. All I did was read when I was a kid. At recess, at home, etc. I just
read. I didn't really understand social interactions and when I left my family
and went to boarding school for high school it became apparent I was extremely
socially behind.

Sitting in conversations trying to figure out a) what the heck people say, how
do they even come up with something to say on inane topics? and b) when am I
allowed to say the one thing I managed to find relevant? was excruciating
during my early years.

Being too literal, to this day, is a problem. Struggling with social norms
around "honesty", another daily issue. The idea that lying is A-Okay
(particularly in business) and that there are some thoughts/ideas I'm not
supposed to share due to social norms hasn't come easy. I'm lucky I've opted
into a career where it's assumed I'll be a little weird (software engineer),
so it's given a pass when I'm too honest, literal, etc.

For me, the big turning point was when I joined acting class my Sophomore year
of HS. I basically just thought, "Oh, this is convenient! I'll just ACT like
someone who is <x> and it'll all work out!" And, yea, for the most part that's
been true. The difficulty of quickly sliding in between "me" and a "social
mask" at work hasn't been fun, but overall I feel like the "mask" has become
me a solid 40% of any given day to great positive effect.

I still find a social situation to be a lot of work. If I allow myself to
drink or do anything that fuzzes my brain at all so I stop DOING all that work
of analyzing the room and figuring out how I'm allowed to engage appropriately
while still being as much "me" as I can, well, then I spend probably the next
24 hours in a shame-cycle about how poorly I must've come off because I KNOW
if I don't do that work then I'm dropping the ball in a million tiny ways.

Early in my relationship with my SO anytime I had caffeine we fought...because
I just stopped reading him and went off on my own happy little zig-zagging
butterfly path. If he didn't explicitly say he was unhappy, I was not going to
pick it up.

It'd be nice to just be able to point to a diagnosis rather than have to blame
myself for fucking up another social scene by letting my attention wander or
drinking or whathaveyou. But, you know, I could just be a normal introvert who
has to work at being social in an extroverted world...

I sort of assume it's the latter.

------
cookiecaper
Autism, like cancer, is not a single thing. Toward the start of the spectrum,
including Asperger's, it seems to be essentially "clinically-significant
weirdness, not otherwise specified" (on the later end of the spectrum, it's
"major or profound mental retardation, not otherwise specified").

A more productive discussion might be why we feel the need to pathologize so
much about ourselves. Why do we need a person to look us over and say "Ah,
none of what you are is your fault" to feel OK?

Worse, why do some parents need to hear that about their children? I've known
kids who've been paraded to several "mental health professionals" until one
would finally give the parents what they ultimately wanted, a diagnosis-as-
scapegoat. In the 90s that scapegoat was ADHD. Today it's Asperger's.

~~~
gowld
Mental Retardation is not autism, though it is often correlated.

[http://journals.sagepub.com/doi/abs/10.1177/1088357606021002...](http://journals.sagepub.com/doi/abs/10.1177/10883576060210020301)

> "Overall, the findings indicate that more empirical evidence is needed
> before conclusions can be made about the percentages of children With autism
> Who are mentally retarded."

Diagnosis isn't a scapegoat, it's a doorway to effective engagements and
improved quality of life.

~~~
thismyusername
I think you're missing his point. What good is a diagnosis if its not
accurate?

