Thursday, August 28, 2014

Why Non-Verbal Autistics are also Intelligent

                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.

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:

                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 TowsonUniversity.  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.
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 boxs 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. 



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, Downs people, 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.  Adults with IQs of 150 work day and night as garbage men.  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!