When
many people hear “lower-functioning” autistic or “severely autistic” they think
of someone who is not right in the head, like someone who is mentally insane
with no control over their selves. They think
that they are simply out of touch with reality. They believe they are not intelligent beings. They see them and see someone flapping their
arms or spinning in circles. They
recognize that they are people who cannot speak or take care of themselves, or
if they speak through facilitated speech, they don’t consider that a valid form
of communication. However, it is not
necessarily that way. Many deaf people
cannot speak and use sign language, expressing their thoughts, feelings and
information in a different way just as people using facilitated speech do. Many non-autistic people with other
disabilities cannot take care of themselves, such as the Nobel Prize-winning
author and astrophysicist Stephen Hawking. Yet many non-autistic people assume “severely” autistic people to be out
of touch with reality because they have repetitive behaviors such as
hand-flapping or rocking that our society just doesn’t tolerate. They think “they don’t think like we do.” Yet simply because they don’t speak like you do
doesn’t mean they don’t feel like you do. When someone hurts them, they feel pain. When someone loves them they feel joy. Just because they do not like to be hugged does not mean they do not
wish to be loved by their mother, or brother, or father, or anyone else. It may be that their senses work differently as
so many autistic people’s do to. Autistic people, according to autism expert Lisa Jo Rudy, do stimming
behaviors, such as flapping arms, because it helps relieve stress and anxiety,
just as biting one’s nails tends to do. The only difference is that biting one’s nails is much more
acceptable. Some stimming can be
addressed by helping relieve autistics anxiety, such as through
medication. Several intelligent
accomplished people with lower-functioning autism include Amanda Baggs, SueRubin, Birger Sellin, and Amy Sequenzia, who all communicate through
facilitated speech. Yet when many
neurotypicals hear this said, they think of some lower-functioning autistics
who have no type-speech ability, whether real or presumed. Therefore they tend to think of them as
unintelligent, but that is not automatically the case. These autistics have never had the chance to
communicate what they know or can do in their minds because they do not have
the communications skills to do so. According to psychiatrist Dr. Laurent Mottron, that IQ tests deem many
non-verbal autistics unintelligent due to lack of speech. He says, “A blind person has a disability and
needs accommodation, but you wouldn’t give a blind person a test based on
vision.” Other’s may point out that for
some lower-functioning autistics, they can’t understand what other people are
saying, or can’t respond. But I know as
an autistic that I and many other autistic people tend to think about things
more visually and don’t respond so much to the word. One of the hallmarks of autism is lack of
recognition of abstract concepts. For a
lot of us, I know, when we see something like “keys,” we don’t think so much
about “keys,” but that particular set of keys, so often times we have trouble
understanding this visually. When I
think of the keys to my dorm, I think “my keys.” When I think of the keys to get inside my
house, I think “the keys to my house.” When I think of the keys to my mom’s car, I think “Mom’s car keys.” I do this to help me identify concrete things
because that is how I think, yet it doesn’t mean I or any other autistics are
less intelligent than you or any other intelligent people you may know. To learn more about how severely autistics
learn, you might check out Ellen Notbahm’s Ten
Things Every Child with Autism Wishes You Knew.
A writer and activist telling his story of following the Buddha's teachings in today's world with autism.
Autist Dharma picture
Thursday, August 28, 2014
Tuesday, August 19, 2014
Still Not Justified: A Response to Washington Post’s Article on Locked-Up Autistic Children
This article from The
Washington Post “Coping with Adult Children’s Autism, Parents May Face ‘the
Least Bad Decision’” by Dan Morse was written almost two weeks ago, but upon
reading it, I could not help but find it unnerving. This sort of thing is happening today. It’s happening everywhere with bystanders who
neither know nor care that it is happening. In this particular instance, where two young autistic twin males where
confined to a room in their house by their parents, the police just happened to
search the room on unrelated drug charges and found the twins. The two young men were both non-verbal, and
had trouble with several independent living skills, such as toilet training.
To be honest, I am accustomed to
news media’s rhetoric on autism where parents and caregivers who abuse autistic
children are given sympathy, yet for me, this article still prompts me to
respond and speak up. The article in
question was a follow-up to a previous article from The Washington Post “Rockville, Md., Couple Charged with Abusing
Twin 22-Year Old Autistic Sons,” which you can read at the link below to get
the story:
This
article talks about a couple in Rockville, Maryland who were found to have
locked their twenty-two year old autistic twin males in their basement with now
furniture. The room was full of urine as
the young men had been using it as a bathroom. Fortunately, the couple in question, John and Janice Land, where
arrested on July 17 and charged with two counts of vulnerable adult abuse and
two counts of false imprisonment, and was reported by The Washington Post on July 21, 2014.
This article did not cause me
such frustration, but the proceeding article, written on August 6, 2014, caused
me much more anxiety. You can find it
below here to at:
http://www.washingtonpost.com/local/crime/2014/07/26/73e3cb4c-1414-11e4-9285-4243a40ddc97_story.html
In
the interest of fairness, I can say that The
Washington Post stayed just behind the line of outright condoning of the
treatment the twins suffered. It did,
however, go to great lengths it seems to dissect certain pieces of the story,
combined with local commentary of people in the Land’s community and autistic
parents with facts on autistic adults to give a “read-between-the-lines”
justification of the Land’s actions. In
the first few paragraphs of the article, Dan Morse quotes a father of an
autistic son Mark Buckman, saying, “…it’s possible that, in [the Land’s]minds,
they thought this was the least bad way to deal with this.” Afterwards, rather than talking about what the
twins experienced, Morse, spends nearly five whole paragraphs talking about
Mark Buckman’s son 18-year old John, and the struggles he has in his daily
life, such as the tendency to wander off, and wearing a tracking device to
prevent such occurrence, followed by numbers and figures on the prevalence of
autistic adults and how families struggle with the lack of services for them,
including a quote by an Autism Speaks executive, Lisa Goering, stating that
there are not enough services for all the autistic adults who need them. Goering’s quote, however, seem rather out of
place as the organization for which Goering is an executive of has, in the past
year, spent only 3% of its budget of over $60million on services that can help
autistic people live independently, with the bulk of their budget being spent
on genetic research for autism, and its top executives, such as Goering.
The
rest of the article deals almost exclusively with the tendency of some autistic
people to wander off, the lack of services for adults once they are out of high
school, and sentiments from parents of autistic children. One woman from Montgomery, Kathy Page, mother
of two sons, 24- and 22-years old, is interviewed and quoted as speculating
that the Land’s keeping their children in a dark room, one littered with feces,
was their way of preventing overstimulation commonly faced by autistic people
from happening to their sons, followed by saying that she can understand the
frustrations experienced by the Lands. Though Morse doesn’t condone the Land’s behavior directly, he seems to
imply that the lack of services available in the future for the Land’s twins
combined with their independent living struggles (for which Morse does not
indicate wandering off), justifies confining their sons in their basement. The article ends with a heart-wrenching quote
from the 18-year old John’s father Mark Buckman saying, “All we want is for our
son to be happy.” To me, there is no
possible explanation for much of the article’s content, other than to perhaps
justify or excuse the Land’s behavior.
For the fact is every one of the parents Morse interviews in his article
are one’s struggling with independence skills.
He does not interview parents such as the parents of 17-year old autistic
young man, Montel Medley, who The
Washington Post itself reported less than two months prior to the current
article as graduating high school with a 4.0 GPA before going off to Towson University. Nor does Morse mention Dilan
Barhmache, a non-verbal teen who gave his high school graduation speech. As for the people Land’s interviews about the
Land’s actions, there is no one quoted in the article as saying that they were
wrong to keep their sons locked up. No
one saying that autistic people deserve the same rights as everyone else. Only implicit sympathy and rationalizing. Perhaps The
Washington Post is looking out in the interest of ratings, but in any case,
the article focuses almost exclusively on autistic people who wander off
combined with the valid laments of parents whose children lack services, and
explanation for the Land’s behavior.
Wednesday, August 13, 2014
Disability Community Remembrance: A Tribute to Robin Williams
Robin Williams.
1951-2014
Comedian, actor. Star of Jumanji, Good Will Hunting, Mrs. Doubtfire, RV.
He starred at a time when other people with learning disabilities grappled restlessly to keep up in the public school systems throughout the U.S. and elsewhere. For many we will remember the shows for our troops overseas, and shall stand out as a good role model to all. He stands out with Keanu Reeves, Orlando Bloom, Liv Tyler, and Henry Winkler as people who excelled in the entertainment industry with a learning disability.
For all of us, disabled and not, let us all remember what every single individual is capable of achieving when given the right tools and resources. When we see others who are discriminated against or abused, let's take note and take action. Many do not fit into our tiny boxes that can only accommodate so many people, but they are built to give us so much and to receive as well. Let us remember that the more we give to communities and individuals, the more we are likely to gain in return.
R.I.P.
1951-2014
Comedian, actor. Star of Jumanji, Good Will Hunting, Mrs. Doubtfire, RV.
He starred at a time when other people with learning disabilities grappled restlessly to keep up in the public school systems throughout the U.S. and elsewhere. For many we will remember the shows for our troops overseas, and shall stand out as a good role model to all. He stands out with Keanu Reeves, Orlando Bloom, Liv Tyler, and Henry Winkler as people who excelled in the entertainment industry with a learning disability.
For all of us, disabled and not, let us all remember what every single individual is capable of achieving when given the right tools and resources. When we see others who are discriminated against or abused, let's take note and take action. Many do not fit into our tiny boxes that can only accommodate so many people, but they are built to give us so much and to receive as well. Let us remember that the more we give to communities and individuals, the more we are likely to gain in return.
R.I.P.
Saturday, August 2, 2014
Rebutting the Lie: The New York Times Article Kids Who Beat Autism
With chelation, cannabis, sauna
treatments, and bleach being widely believed by ordinary people to be
legitimate treatments for people with autism, this article I read came of being
particular disgust to me. Recently, the
New York Times did an editorial called Kids
Who Beat Autism, describing as its name suggests, that certain kids who
were, at least, autistic now no longer have autism, by Ruth Padawer, which you
can read here for a balanced perspective on my rebuttal:
As I finished this article, I
find myself fairly unimpressed with its findings and studies. To be fair Padawer stops just short of
condoning the idea of eliminating autism. She admits that certain marketed treatments out there, such as vitamin
shots, special diets, and nutritional supplements, are dangerous, yet the
rhetoric of this article appears to be that autism is a prison for children, to
say nothing of what it is for parents, making them unable to have real
relationships, and be a perpetual hostage of their own world, but that they
have found a way through safe treatment (e.g. Applied Behavior Analysis) that
delivers them from this cage and makes them non-autistic, and thus now able to
lead happy, meaningful lives. Throughout
the article, Padawer consistently draws from studies which demonstrate greater
social progress for children who received more hours of A.B.A than less, such
as full, or at least greater language ability.
What Padawer does not mention is autistics who are non-verbal and who
also lead productive and socially successful lives, such as Amanda Baggs, Amy Sequinza, and Sue Rubin. For the first
eight paragraphs in Padawer’s rather long article, she mostly discusses a young
child named B. Her article begins with
saying B. was a perfectly developmentally typical child until he was around
two, when he retreated into his own world, stopped using eye contact, had tantrums,
and frequently banged his head. About
nine paragraphs into her article, Padawer also talks about another child,
Matthew, who at the time at least had autism, and states quite clearly that
Matthew was not interested in other children, and who also had limited
communication. Seven and eight
paragraphs into her article, she points out that through years of A.B.A, B., gained language skills, talked frequently, and abandoned his need to
perseverate about his special interests in dinosaurs and fish, and eventually
his doctor claimed that B. no longer had autism.
Now to me, this seems like an
incredibly oversimplified idea of what autism is. I can carry on a conversation, make eye
contact, read social and emotional cues, have discussions with peers that are
interesting to both of us, yet my parents and family would raise an eyebrow if
they heard a professional say I wasn't autistic. I still exhibit fixated interests, have
trouble sleeping (mostly during highly stressful periods), can be averse to
certain food textures, even though that is gradually changing. Two paragraphs after Padawer states B. was
diagnosed as being no longer autistic, Padawer states that autism is based on
certain diagnostic criteria, which children can grow out of and are thus no
longer autistic, even if they do display some autistic traits. But maybe a fair question is, “Who decides
the diagnostic criteria for people with autism?” The criterion has changed over decades. The criteria by which I was diagnosed as a
young child is now very different from what it is now that I am twenty-four. In
any case Padawer and certain psychologists may say I or other children outgrew
what defines autism. Yet from what I see
many diagnostic traits, such as the lack of interest in other people are merely
impressions of psychologists. Autistics
do have interests in other people, yet don't always know how to express it,
many of whom don't have the language skills to do so in the ways that come
naturally to verbal neurotypicals, or the lack of innate ability to read
non-verbal social cues, so I am not impressed by the findings that children's
"interests" in people increase with language skills, and the ability
to read social cues through intense training. The article made no mention of the frequent overstimulation autistic
people experience when it mentioned head-banging and tantrums. Autistic people learn certain things
differently just as children with dyslexia and AD/HD do. In Padawer article, she makes no mention of
historical people believed to have autism, such as Leonardo da Vinci, Albert
Einstein, Harry Truman, or Abraham Lincoln.
In the words of 2011 autistic Miss Montana winner, Alexus Wineman, “Autism
doesn’t define me.”
Padawer mentions nothing as to
whether the brains of autistic children change after their treatment. She simply mentions that no one knows about
what differences there are in the autistic brain. I would also point out that there is
knowledge on the differences between autistic and non-autistic brains, Time
magazine did an article in 2006 on autism, which showed many ways in which
certain parts of the brains of autistic people are different than in
non-autistic people. You could probably
find it if you googled "Time magazine autism 2006." Padawer merely quotes, vaguely, that
psychologist Geraldine Dawson’s believe that the autistic brain could
change. Padawer makes no mention of
Dawson’s tenure as a board member of the group Autism Speaks, which then held
to the belief that vaccines cause autism. The fact that Dawson was paid over half a million dollars for her role
as an executive should automatically remove her from a list of non-biased
sources. Padawer also makes no reference
to the fact that A.B.A is not an appropriate treatment for autistic
people. My father, a PhD psychologist in
Overland Park, Kansas, claims that A.B.A would have been a horrible treatment
for me and that the right school was the right path for people like
myself. Padawer does not lie, to be
perfectly honest, but her facts lack the insights and complete picture that can
only be gained with other equally important stories of several individuals with
autism. For me it is necessary to refute
this article because people are ensnared and led to dangerous decisions by
ideas like Padawer’s. These children's
autism is clearly not cured, and promising this illusion simply creates shame
for parents who fail to "cure" their children, rather than
redirecting their energy to advocate for services for their kids and let them
make it through life. The so-called
findings in this article seem to merely be a by-product on our culture's useless
war on autism. I would not say my life
is worse than for people who haven't been cured. I am a college student, an artist, a writer,
a flautist, and a friend to autistics, neurotypicals, dyslexics, people with Down syndrome,
and a part-time retailer. For me, being
able to tell people I am autistic allows them have sympathy for my unique
behavioral traits and it entitles me to test-taking services at my university. From the material I read I find this article
shows the typical culturally idiosyncrasy of the idea that autistic children
are science experiments, and ignorance of us as first-class citizens.
Friday, August 1, 2014
Letter to Histories Autistics
Dear Leonardo da Vinci, Michelangelo, Ludwig van
Beethoven, Thomas Jefferson, Emily Dickenson, and John Lennon,
You
are some of histories greatest thinkers, artists, and innovators. Da Vinci and Michelangelo, you helped bring
about the Renaissance Age which gave way to science and reason. Ludwig van Beethoven, you helped bring about
the Classical Age of art and culture. Mr. Jefferson, you helped found and create our great nation with its
values of liberty, justice, and equality.
Emily Dickenson, you helped create the Romantic Era, an era of looking
inward and the inner journey of each individual. John Lennon, you helped spark the Counterculture
Age of the freedom to question traditional values. You all helped create the world as it is
today with its treatment of people. Yet
today the world has woefully excluded one group of people from this great
social vision, people that you are a part of. Today autistic people basically have no access to society. They lack the services in education and
health care needed to help them live to their full potential. They need to learn good communication so they
can keep up with others and themselves in the workforce. Older people with PhDs are
chosen for jobs over youth with no college experience. Yet politicians steal, cheat, and lie. We spend so much money on wars in the Middle
East and donating to thieving African politicians, so we don't have any money we
need towards the right services. The
nation’s top ranking Special Education program at the University of Kansas is
staffed full of professors who teach that autistics are unemployable with autistic
students in the class. We are like fish,
so immersed in water to know we are wet. Groups, acclaimed as charities make hate speeches against autistic
individuals, saying having a child with autism is a living hell or that it
would be better to have no children than to have an autistic children, and
these organizations are sponsored by businesses, schools, hospitals,
celebrities, fraternities and sororities, and politicians. Autistics are too afraid to speak up because
they know only too well abuse in our system. You were all autistic people and you all used your vision and wisdom to
help capture the hearts and minds of people, and now it is lost. Today we need you to use those very things to
help capture people’s attention for us so we can keep up with our neuro-typical
peers in the world. Please help us so
that American bureaucracy does not squash the fruits of the labor and potential
of autistic men, women, and children in the United States. In the name of all that we hold dear, please
HELP US!
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