
Myths about autism - williamhpark
http://www.bbc.com/future/story/20151006-its-time-we-dispelled-these-myths-about-autism
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fecak
The issue with articles that try to discuss "autism" as a whole tend to ignore
that the wide spectrum of people diagnosed makes it impossible to generalize.
The child in class who is considered quirky and exhibits a few rather harmless
traits shares the same diagnosis as my child who is entirely non-verbal and
exhibits self-injurious behavior.

The difference between someone considered "high-functioning" and "low-
functioning" is often dramatic.

Until we separate the spectrum into a more distinct subset of disabilities (as
well as abilities), the autism community will continue to be fractured into
those who consider their autism a gift that want to "keep" their autism
pitting themselves against the families of the most severely impacted who are
advocating for those who often can't speak for themselves.

~~~
hoopism
I know it's the huffingtonpost but this article speaks to that pretty well.
[http://www.huffingtonpost.com/bonnie-zampino/is-autism-
the-r...](http://www.huffingtonpost.com/bonnie-zampino/is-autism-the-real-
public_b_8191918.html)

~~~
fecak
That article and a recent social media debate prompted the comment. The debate
was with a well-educated adult woman saying she'd "rather have autism than
$CURABLEDISEASE", and she referenced the adorable children of her friends that
had an autism diagnosis that were delightful to be around. She recounted a
recent conversation via communication device where a little girl expressed how
she felt (and liked) her own autism and being different.

I explained that autism didn't look like that in all cases, and if she wanted
autism she'd have to take the autism of my child who at 11 isn't capable of
these types of interactions and generally has a rough go of it.

I think most people now realize how different the ends of the spectrum can be,
but the high-functioning end of the spectrum sometimes engage with those
advocating for the low-functioning end. If you like your autism, keep it - but
those of us impacted by the "other" autism will keep advocating for our
children. Separate diagnoses would help this tremendously.

~~~
hoopism
"she referenced the adorable children of her friends that had an autism
diagnosis that were delightful to be around"

We've gotten better at understanding where people are coming from with
statements like this... the first statement ("rather have autism") is just
bizarre.

It's pretty common that when someone learns our daughter has autism they say
"She's so beautiful, she won't have any trouble". I'm still not sure what that
means.

~~~
fecak
>It's pretty common that when someone learns our daughter has autism they say
"She's so beautiful, she won't have any trouble". I'm still not sure what that
means.

We get the "she's beautiful" thing often as well. If I had to guess, I think
it's a reference to the fact that her disability may be harder to recognize
than some others (Downs Syndrome or a prominent physical disability come to
mind) and she'll be able to blend in when she's not exhibiting more noticeable
and negative autistic behaviors (stimming, vocal stimming, self-injurious
behavior, aggression). She has a friend with Downs and I like to watch how
other children and adults react to the them when we're in public together.

The other thought I get when I hear "beautiful" is, in basic terms,"her looks
are a good quality that helps balance the less attractive aspects of her
behavior". We're very conscious of keeping up her appearance (hygiene,
clothes) primarily for the purposes of the school and others who take care of
her. Since she doesn't speak, keeping her looking cared for at least lets
caretakers know that she is loved and we expect her to be treated as a human
being. I imagine parents of typical children might have that same philosophy,
but I can only speak to my experience.

------
hoopism
I have first hand experience of raising a child with Autism and with ABA
therapy.

The myth element dealing with ABA is a bit strange. The first statement seems
focused on the prohibitive nature due to the commitment. Then it points out
the implementation as being a form of abuse and lastly hints of discrediting
the practice on the whole. Not sure what part is myth here...

I am not an expert but I know how it's worked for my kid and several other
families. It's my understanding that Lovaas and early practitioners of ABA
were much more strict in their approach. Children were made to sit for long
periods through repetition and there was an element of "correcting" that could
include a slap or stern language. From my understanding and experience this is
just not the case anymore. ABA has adopted a lot of the methodology of other
treatments such as floortime where the session is a play environment. There
are discrete trials and it's still very data driven but it's structured into
activities that the child (or adult) are motivated by. If ever my child was
not enjoying their time or was being "abused" in any fashion we would be the
first to stop the therapy.

We've encountered a number of older adults who work with children who are
horrified that we chose to go with ABA as treatment. Their views are largely
based on decades old information of the implementation. We've had those same
people sit in on sessions and by the end they are taking notes and asking
questions about ABA.

We do 20+ hours a week. It's intense but the intensity level is governed by my
child's enthusiasm and willingness. If you have an ABA provider who is
punishing, pushing or not creating a fun and loving atmosphere for your child
then please speak with someone else (though I know this is not the case for
vast majority of people).

~~~
Amorymeltzer
Thanks for sharing your experience! Genuinely curious (since I know a bit
about them) why you went/stayed with ABA if the main positives and advances
were adopted from DIR Floortime, etc. Why not go with Floortime?

~~~
hoopism
We actually did both.

We felt that a lot of what floortime included were things we were doing (based
on reading a number of books)... and I mean that as a positive. While I
appreciate the child directed nature I felt like the structure and data driven
model provided a better framework for our daughter. She's very young and a lot
of what we work on are super fundamental skills. ABA (at least our provider)
has been very thoughtful about creating a plan that identifies her struggles
and implements strategies that are tailored to her to build skills.

We tried a lot of things and could see positives in all of them... so we
ultimately decided to cherry pick what we like and help structure her program.
ABA provided us the framework to measure what works and what we need to
change.

I encourage parents to try a few things and see what works for them.

------
UhUhUhUh
My take as a psychologist.

Myth #1: It is partly a diagnosis issue but that will not be solved by waving
a spectrum wild-card. Strictly _all_ mental-health disorders are present in a
normal state in the general population. That goes for mania, depression,
oscillations between the two, lack of empathy, anxiety, and even psychosis
(e.g. it would be very unhealthy to not be somewhat paranoid these days,
dreams are necessary hallucinations). The inability to fluidly shift among
these many ways of dealing with reality, following the circumstances is, in my
own personal book, the problem. Past a certain degree of rigidity, that itself
fosters behaviors, we have a problem and often the person is aware of that.
That ties in with Myth #2.

In my experience, it's not lack of empathy but a deficit in the ability to
intuitively project into an other. A very large proportion of our interactions
and behaviors rests on intuition and subconscious processing. I often compare
autism to flying instruments. Try it and you'll very quickly get a clue of
what it feels like to lack this intuitive processing.

The sad and hard thing is that autistic people do suffer from that and are
often driven crazy not by the autistic thing but by the, secondary, suffering.

For adolescents. it's even worse: they fly instruments in a storm.

Myth #3: So it really isn't about normalizing but about increasing
flexibility. And reducing suffering is pretty much a pre-requisite towards
that. Even in Aspies, this suffering is sometimes so great that it reminds me
of homosexuals before the invention of the "coming out".

------
autismjohndoe
There are indeed a lot of myths about autism in the press, and they should be
dispelled. Unfortunately Silberman doesn't really know what he's talking
about, despite what are surely his best intentions. (He's a journalist, not a
scientist.) Many people with autism diagnoses _do_ lack empathy for others;
it's part of the condition. Labeling that a "myth" is simply incorrect.

We need more coverage of scientific journal articles, such as the many papers
that point to cerebellar involvement in autism, which Silberman does not
discuss at all. The lack of hard science in the debate makes it too easy for
myths and vague superstition--even among doctors--to fill the gap.

See [https://medium.com/p/we-don-t-do-
autism-d6de9d4f8913](https://medium.com/p/we-don-t-do-autism-d6de9d4f8913).

------
ap22213
I only had time to skim, but is the first myth really false?

When I was a kid in the 70s - 80s, I had never met another child with autistic
like behavior. Yet, of my son's friends, two of them are clearly autistic (and
diagnosed), and several of them seem on the spectrum (including my son). I
also have several friends with autistic children. How could it be that it was
just under diagnosed previously?

On the other hand, my parents recall me having 'autistic like' behavior until
I was 5 or so. In fact, I didn't speak until I was 3. I asked my mom about
this, and she said she wasn't worried because she figured that I'd speak
eventually. Such a strange attitude to me as a modern parent.

~~~
seiji
_but is the first myth really true?_

Does anybody take into account more modern business practices of putting tens
of thousands of smart people in a small geographic area? That leads to smart
people breeding with smart people which seems to be a known catalyst for
spectrum disorders.

Before the mid 1900s, we didn't have mass service/technical employment (read:
companies requiring "smart" employees instead of interchangeable factory
labor) or ease of global relocation on a whim. You'd grow up on a farm, meet
someone from your town, then settle down in your own town, and the cycle would
repeat for generations.

~~~
VLM
There does exist a mythology that we were all hunter gatherers until the first
internet bubble, however, Harvard was founded in 1636, I have an ancestor who
was an English prof there in the early 1800s, ancestors who were "in the area"
for the last 400 years. We should have plenty of data from other ivies vs
nearby similar sized towns without higher ed.

------
silverlight
I was surprised to see that the most prevalent "myth" about Autism -- that is
is caused by early childhood vaccinations -- wasn't mentioned. Especially
since that myth is making the rounds again after Donald Trump stated it as
fact during the last Republican Presidential Debate.

EDIT: I was mistaken, it was mentioned. Bad reading on my part :-)

~~~
Kenji
Especially because it actually was mentioned in the article :)

EDIT: Hehe, no problem. I lost count of how many times I overlooked things in
articles that I skimmed.

~~~
silverlight
Ah! You're right. Totally missed it in the paragraph under that photo. My
mistake :-)

------
Kenji
_Myth #4: We’re just over-diagnosing quirky kids with a trendy disorder._

I'm sorry but this is true. I know plenty of (diagnosed) autistic people and
they seem to cope okayish with their daily lives. The real deal - and I've
read heartbreaking articles about it - is when the (even grown up) autist
cannot take a shower on his own, and when he is asked a question he is merely
capable of repeating fragments of things he heard before, over and over again.
No normal communication is possible. A severe disability. Mental disorders are
_massively_ overdiagnosed these days, it's a business with little backing of
solid science, and I ask anyone who claims the opposite to show me solid
evidence and research papers.

~~~
46Bit
> Mental disorders are massively overdiagnosed these days, it's a business
> with little backing of solid science, and I ask anyone who claims the
> opposite to show me solid evidence and research papers.

When stating your opinion as fact, the onus is on you to give evidence. I ask
you for solid evidence and research papers.

~~~
Kenji
So wait, the burden of proof is not upon the one making the diagnosis, it's on
me? That kind of science is new to me. Thank you for your input. I did plenty
of research, I only hear of the keywords 'chemical imbalance in the brain' (or
for autists 'atypical brain structure' or whatever) but whenever I dig deeper,
I return empty-handed because nobody can explain to me coherently what is
missing, what is wrong, and how it's supposed to be fixed. I actually have a
great interest in psychology so my request for information was genuine.

~~~
6stringmerc
Where you're coming from is a valid avenue, to me, considering that you're
starting from a skepticism position and asking for some quality materials to
review. I'm going to share some personal perspectives that might be relevant
to your interest. As it's not peer-reviewed or an empirical study, but rather
one based on 30+ years of experience, I do feel it's kind of in line with a
personal psychology study. I don't get too specific out of personal
reluctance.

For reference, I've got a physical handicap that is part of a spectrum. There
are folks like me who can't go a couple weeks without medication, and others
who have such a minor expression they would never know they had the condition
unless in certain medical circumstances. In reality, some of those who would
fit the diagnosis on a medical basis have lifestyles which would indicate they
do not have the condition. On the flip side, my lifestyle has been forced to
conform to the condition, so to speak, in order to appear "normal" on a day-
to-day basis.

Because I received some special accommodations over the years, I got first-
hand interactions with kids/youth with other conditions as well. When looking
back at those years, I'm reminded of the (very real) condition labeled
Obsessive Compulsive Disorder (OCD). Again, it's a disorder along a spectrum,
not necessarily testable by blood, but there are methods for a diagnosis.

As the condition itself got more commonly known, the phrase "I'm a little OCD"
started to seep into the US lexicon. In my experience, these were (most often)
people who genuinely didn't have the condition who felt that by saying they
had some symptoms, but, more than likely, would never fit the diagnosis. This
was brought to my attention by a drummer friend in college, who genuinely had
OCD tics (silverware arrangement before eating) and shared with me his
frustration at the, well, minimizing of his condition.

The whole gist of this musing is that based on my upbringing, I've never
wanted my condition / disability / handicap, nor would I want to be public
about it and seek special treatment as a habit. As society in the US has
changed to be more understanding and accepting of individual issues (to an
extent), be it a handicap, socially progressive sexual preference and
expression that used to be highly taboo, or a food-type allergy, I see there
is a genuine trend towards special accommodations as a right to be fought for.
It's a benefit to those who need it, but it's also an avenue for exploitation
by those who feel compelled to do that...and when criticized, there's an
immense push-back.

So, without being too glib, first it was OCD, then it was ADHD, and now it's
Autism. Each one is genuine, and each has measurable symptoms with respect to
functioning in daily life. However, unlike my condition, which nobody in their
right mind would want or advertise unless for straight up bullshit sympathy,
there are some benefits to over-stating one's personal affliction.

I've no doubt some people would take issue with this perspective, but if I'm
framing it properly, that would potentially be the avenue for more research
via psychology: Studying human behavior relating to adopting a negative for
access to a positive. In the most extreme case, I'd reference when a person
fakes cancer for sympathy and/or financial gain (of which there are documented
cases), and compare that to parents who simply want to understand their child
and will look all over for answers, or convince themselves that somehow what
they've come across is the answer.

