From: "Vincent C
To: [email protected]
Subject: Autism Speaks - Watch where you tread
Date: Tue, 16 Jan 2007 16:41:58 -0500

 

You seem to have touched upon a very hot-button issue in your Daily Facts.
As it turns out, Autism Speaks is not universally popular, especially among
the autistic community (to be differentiated from the pro-cure "autism"
community which includes Autism Speaks).

Autism Speaks plays on people's fears and emotions to achieve their ends.
They point out how hard it is for parents of autistic kids, who have to deal
with stimming and violent behavior and children who apparently don't love
them and aren't happy. They cite the statistic that "1 out of every 166
children will be diagnosed with autism" and ask you to donate to them so
they can fund research for a "cure" for autism. They talk about how sad it
is that autistic children are retarded and emotionless. They cite the
seemingly bizarre, purposeless behavior known as stimming (look it up if you
don't know what it is) as evidence of how confusing and difficult to
understand autism is, hence the puzzle piece they choose as a symbol of
autism awareness.

What they don't talk about is how hard it is for the autistic kids and
adults (yes, autistic kids grow up to be autistic adults, and there are
many) themselves, who have to deal with people calling them emotionless and
cold. Autistic people do feel emotion, including love, sadness and
happiness, just like anyone else, but many simply have trouble understanding
and expressing the emotions they feel and those of others, which appears to
be a lack of emotion to those who don't know any better. They don't talk
about how hard it is being constantly told that there is something wrong
with you, or how hard it is to be ignored by your parents because they see
that you don't react to their love like a neurotypical (a person of
"typical" neurology, non-autistic), and therefore assume that means you
don't love them or want their attention.

They don't tell you that the statistic they cite is the most liberal one
available and includes not only people with low-functioning autism (those
who cannot speak, react violently to interruptions of their routines, are
mentally handicapped, and don't seem to express emotion at all) but also
those with high-functioning autism and Asperger's Syndrome, who can speak,
are not always violent (there are some who are, of course, but there are
many violent neurotypicals as well and neither subgroup is entirely
representative of the whole), and can live full, independent, happy lives if
given the chance. Autism is in fact a broad spectrum of conditions, with
different people exhibiting different, more, or fewer autistic traits than
others. When a higher-functioning autist stands up and says they don't agree
with Autism Speaks, they are told that if they can speak, they must
therefore not be autistic, despite the fact that the statistic they plaster
all over the TV includes those who can speak.

They don't tell you that the causes and purposes of stimming are in fact
well-understood by those who exhibit it, but our opinions are rarely asked.
As it turns out, the main reasons we stim include expressing and dealing
with our emotions, and also simply because we find it to be highly
enjoyable. To forcibly stop us from stimming is akin to forcibly stopping a
neurotypical child from laughing or crying. If the stimming is not harmful
and does not cause any distress for the stimmer, there is really no
justifiable reason to stop it.

They also don't tell you that there is, in fact, mounting evidence that
autism is neurologically based, meaning a "cure" for autism would
necessitate restructuring of an already formed brain, which is highly
dangerous, if even possible. Even if there was a safe, effective cure for
autism, not all of us even want to be cured. Many of us actually like the
way we are, and there are even people who seek us out as friends, saying we
offer them insights about life that they would never get from a
neurotypical. We may not be able to focus on any and all tasks you set
before us, but we can accumulate encyclopedic amounts of knowledge about our
chosen field of interest (yes, sometimes that field is squirrels, as the
stereotypical image of autism says, but many of the higher-functioning
autists have interests with actual applications in real life. In fact, it
appears the UK is actually in need of squirrel experts to save their native
red squirrels from the American grey squirrels, so don't be too quick to
judge). We may not be good at lying, but many people actually appreciate the
honesty and bluntness we offer them. We tend to have more "logical-thinking"
mindsets than neurotypicals, which, of course, helps in situations where
logic is needed.

I do not claim that the above paragraph applies to all autistic individuals
- as I said, autism is a broad spectrum of conditions. A person who cannot
communicate obviously cannot be blunt and honest, and cannot help with
situations that require logic regardless of how logically they think.
However, some autistic people simply do not have good motor control and
therefore cannot speak or write well, but if taught to use a computer or
picture board, find they are able to communicate through other means. This
statement also is not universal, of course.

I also do not mean to say that Autism Speaks is an entirely malicious
organization. They do advocate for various therapies that can help, such as
speech therapy and social skills training. The main problems with them,
however, are that they do not in fact speak for all autistic people (many of
whom are quite able to speak for themselves), and that they actively spread
misinformation about autism. In addition, they are currently in the process
of merging with Cure Autism Now, an organization which claims to seek a cure
for autism, but which in fact is primarily involved in perfecting a
prenataltest for autism (in other words, "curing" autism by preventing
autistic
people from being born, much akin to curing a headache via decapitation).

If you want to promote awareness, you may also want to link to these sites:
http://www.aspiesforfreedom.com - I don't agree with everything they say,
and the founders seem to hold a grudge against me for an angry outburst I
had a while back, but they're the most active
anti-cure/pro-therapy/pro-culture group in the autistic community, and they
have the right idea for the most part.
http://www.gettingthetruthout.org - A site about autism. I'd recommend
reading at least to the eleventh page. The first ten pages are fairly short,
so it shouldn't take too long. Be patient, it's worth it for the knowledge
you'll gain.
http://www.autisticculture.com - An overview of our culture. Most of it is
maintained online, and therefore some people would not consider it a real
culture, but we consider it to be. There's less garbage about interpreting
subtle body language and such online, so it's easier for many of us.

There are other sites worth looking at as well, of course. Just remember
that you shouldn't believe everything you hear in the media, or anywhere
else for that matter. There's two sides to virtually every issue.

If you've patiently read all of this, I thank you. Know that I read all of
the stuff you post on What's Happening, so I hope you'd take the time to
hear me out as well.

Have a nice day.
--The Almighty Doer of Stuff