
Why I love knowing I have high-functioning autism - edward
http://www.telegraph.co.uk/women/womens-health/11999072/Why-I-love-knowing-I-have-high-functioning-autism.html
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madaxe_again
I have such mixed feelings about this sort of diagnosis. I don't for an
instant deny that she may well fit the criteria and that autism and aspergers
are both very real, but I find the seemingly increasing need for people to
have a label, a category, a diagnosis, a reason... disturbing.

ADHD is the classic example of this. Were I school age today I would almost
certainly have been given the dual badges of ADHD and aspergers - my brother,
who is seven years my junior, is labelled as both. Me, I'm just eccentric.

Why this bothers me is the outcome it can lead to. Having a "reason" for you
being as you are leads to self-justification, to complacency at one's station
in life. In his case he's medicated and in the eighth year of an undergraduate
degree. I finished my masters in two years and founded a startup two years
later as I am incapable of sitting still. I _like_ being an undiagnosed
creature, as I've ended up finding something that suits those traits in me,
rather than suffering from them.

I know this is anecdotal, and this really isn't done diatribe against mental
healthcare - plenty genuinely need it - but I worry that too many engage in
that funnel out of some misdirected need to conform, and end up losing part of
what and who they are.

~~~
mikeash
This sure sounds like an argument that the truth can be bad for you.

Maybe having a reason can lead to complacency, but is a person like that going
to be a huge success otherwise? With the right attitude, having a reason can
lead to better understanding, greater drive, more success.

I don't think it's about having a label. It's about understanding what's going
on so you can better accommodate it. Once you have a diagnosis, you
automatically have access to a vast wealth of knowledge which can help you to
cope.

Think of breaking your leg. Is getting it diagnosed as "broken leg" just a
search for a label which will lead to complacency? Are you better off thinking
your broken leg is an eccentricity which is some unique part of who you are?
Of course not, you want to get it diagnosed as "broken leg" so you can bring
all modern medical science to bear on it and get it fixed up so you can heal,
and cope with it in the meantime.

Mental disorders are not the same as a broken leg, but they aren't so
different, either. I think we'd be better off if we'd stop drawing this fairly
arbitrary line between "physical" and "mental" problems.

~~~
meric
Is it really "truth"? Some call it mental disorder, but really, it's just
another position on the bell curve and could just as well be labelled as
another aspect of personality. When 11 percent of population have ADHD I can't
say it's a disorder with a straight face.

~~~
jacalata
Something like 8% of men (~5% of population overall) are colorblind, do you
object to calling that a disorder? If not, what's the cutoff: anything over
10%? Myopia is up to 30%, does that make it not a disorder?

~~~
rtl49
Clearly defining a psychological disorder is far more nuanced than
colorblindness and myopia, and there is good reason to believe certain of them
are diagnosed too frequently. We can acknowledge this without denying the
existence of psychological disorders.

~~~
lfowles
It becomes a disorder when it's detrimental to regular life. Many who have
ADHD are incredibly frustrated at their apparently lack of willpower. It's not
the rest of society pressuring them to come closer to the norm, they want to
get themselves to the norm too. Perhaps it is overdiagnosed and overmedicated
in some settings, (I realize you're trying to get conversation away from the
more black and white physical conditions... myopia has always seemed a good
analogy though, so I'm going to continue using it temporarily) but you
wouldn't tell a shortsighted person that they're not that far off of the bell
curve, just squint your eyes once in a while to make up for missing detail.

~~~
rtl49
I was aware of this definition, and I have sympathy for those who are
frustrated with some of their personality traits. Nevertheless, I don't think
it's unreasonable to suggest that this frustration could arise because of
circumstance, rather than as the result of some "organic" problem with the
person. The idea is that it's more of a mismatch between the person and his or
her environment, rather than a problem with one or the other.

------
randomdrake
I used to teach in special education environments. Specifically I've had
experience with high to mid functioning kids on the autism spectrum in science
and mathematics.

While I can appreciate the sentiments of folks that may find this sort of
thing recognizable because of those who are self-diagnosing across the
Internet (which is not a new trend BTW), I'm inclined to believe this isn't
the appropriate forum for that.

I too thought this may have been something of less note or of the
aforementioned tone until I got the opportunity to read the post in its
entirety.

> _The me that felt an overwhelming terror at the idea of travelling on the
> tube or getting into a lift. The me that didn’t claim child benefit for any
> one of my four children simply because the idea of filling in a form was too
> much._

> _No one saw the me that would spend 14 hours straight, focused on a project,
> forgetting to dress. The me that felt an overwhelming terror at the idea of
> travelling on the tube or getting into a lift._

> _I was told I have Ehlers Danlos Syndrome (EDS), a rare genetic connective
> tissue disorder, which affects pretty much every part of my body, causing
> gastroparesis – where the digestive system simply shuts down – knees that
> dislocate and autonomic issues, including difficulty in regulating
> temperature and heart rate._

Having sat in on meetings where parents, and their children, are given the
opportunity to identify with a particular condition, I can tell you that this
is a profound experience, not to be taken lightly.

Being able to have a direction to go towards in identifying IEPs that may lead
their child towards a different and more successful path in their lives
doesn't involved "mixed feelings." This isn't limited to education.

I have no doubt this is _profoundly_ true for adults who have the capacity to
discover and explore their own route toward their feelings of betterment and
belonging in this world.

------
dayon
As a certified psychologist with the authority to diagnose autism in one of my
practicing states, I'd be highly interested in meeting with this woman. I find
it very unlikely that she could make it through 46 years, marrying, having
children, working jobs, generally getting by with high functioning autism.

Having worked with countless children and adults who have / had Aspergers (no
longer exists as of DSM-V) and other degrees of autism, stories like hers
don't add up. There's a good chance that her psychologist did what many
psychologists do today: misdiagnose. Her story does not include one piece of
solid evidence that something is seriously abnormal.

That's not to say she does not have autism, but there would have to be a
glaring issue with her social, behavioral, or mental functioning, which likely
would've prevented her from living a relatively normal life for so many years.

Just because we fit criteria or because we have problems in our lives, it does
not mean that we have to give our issues a name. If there's a particular
problem, then seek help to alleviate it and stop boxing ourselves into these
qualifications and descriptors that essentially mark as fixedly abnormal.

~~~
205guy
I probably shouldn't argue with a certified psychologist, but I think you need
to broaden your horizons, or at least open your mind to the possibilities.

Except for a few nuances, this article could've been written about a woman
friend of mine. She was diagnosed with Asperger's 2 years ago (by a west coast
expert), at the age of 46, but she'd known her whole life she was different,
without being able to adapt. She could go to regular school, but was made to
read books by herself because she was ahead of the class and responded
inappropriately when called. She had definite stimming behaviors when anxious
or excited, on top of being physically clumsy and socially awkward. She was
bullied in school, ostracized, even verbally abused by her parents ("can't you
just behave normally like other kids?"). All of these left lasting trauma that
could've been prevented by an earlier diagnosis, but there was no awareness of
high-functioning autism when and where she grew up.

After smoking a lot of pot to cope in her teens, in her 20s she found work
with animals and then computers, both of which she understands better than she
understands humans. She took speech classes to be more confident and
understand how others could talk in public. Over time, she was able to
minimize her outwardly visible traits, such as the stimming. With financial
success she was able to live independently and seemingly normally. But then a
bad marriage sent her into a depression, and her psychologists gave her many
diagnoses (including bi-polar) and prescribed many different drugs. None of
them worked long term because the root of her depression was the Asperger's,
not a traditional depression (for lack of a better term). Again, not being
diagnosed with Asperger's led to many needless pharmaceuticals and suffering.

Once out of the bad marriage, she got better though she attributes it to the
dozen or so supplements she takes (research on the Internet and self-
medication). She met and married someone else that was good for her, and had a
child. She herself now says that was a mistake, because she cannot cope with
the constant attention and neediness--and she's lucky because her child has
less Asperger's traits than she does. With aging and stress of family life,
she says her Asperger's traits are coming back. She feels more anxious, she's
claustrophobic again, she has trouble with people again, for example meeting
with her child's teachers, and I've seen her have a regular tantrum when
something went wrong.

Noise such as beeping machinery bothers her, and so do fluorescent lights
because she can see the flicker in them. When she's having a bad day, all of
her senses are heightened and over-sensitive to the point of pain (her
description). She tried homeschooling, but she got in horrible fights with her
child. That's when she finally got diagnosed (just when Asperger's was dropped
from the DSM-V), and now she mentions her diagnosis to the people she
interacts with regularly, to explain why for example she can't talk to a
teacher in a classroom with fluorescent lights and lots of noise. So even
though the diagnosis doesn't change anything and there is no medicine that can
make her better, it has really helped her explain to herself and others how
and why she is the way she is. It might also prevent misdiagnosis in the
future.

Sorry for the long anecdote, but I really wanted to give you another example
of high functioning autistic person that seems totally normal and issue-free
from the outside (or at least used to be--she's losing friends now that she
has more outbursts again). Yet knowing her story and her diagnosis, I can see
how Asperger's has colored her life and often not in a beneficial way. And
often it was the lack of diagnosis in those times 40 and 20 years ago that led
to situations that hurt her (ostracized by her parents with resulting trauma,
mistreated and mis-medicated for depression).

And just because the lady in the article doesn't talk about the negative side
of her Asperger's, doesn't mean there isn't one. Like my friend, the negative
aspects are private and sometimes traumatic. One more thing: the person
pictured in that article looks strikingly similar to my friend: thin lips with
an unnatural smile, bad hair, poor makeup and slightly off-style clothes (all
poorly imitated social graces). I know it's totally unscientific, but I often
notice that people with Asperger's (those I know diagnosed, and others I
suspect undiagnosed) have trouble smiling artificially for a camera. My friend
said she noticed her awkward smiles in pictures and learned how to consciously
smile for the camera.

So especially as a professional in your field, I wish you wouldn't be so
dismissive of Asperger's individuals, it doesn't help them in any way.
Asperger's, or high functioning on the autism spectrum as we should say now,
is a strange thing. It's a collection of many possible deviations from normal,
and not every person diagnosed has all of them, yet there is a certain
unmistakable blend of behaviors and reactions, sensory sensitivities, social
inability, and mind-blindness (lack of theory of mind). Yet the high-
functioning individual can mimic or even learn coping behavior that hides some
of these (usually not all at once). It doesn't mean they enjoy doing so, or
don't have the underlying issue anymore. In fact, my friend says she is
physically exhausted at the end of a successful parent-teacher conference just
from needing to think so much about how to behave and fit in--and stressing
about it.

~~~
dayon
While I appreciate your story, have you considered that you misread my post?
It's the only way I can explain the myriad straw-men in yours.

