For some, Down Syndrome can be deadly.
There is a blog out there, Lives Lost To Autism, with the tag-line, "For many, autism can be deadly." It is authored by a variety of people, including Kim Stagliano, an excellent autism advocate for the whole ASD spectrum and a parent of three girls with autism.
I do not think ASD is - by itself, fatal. However, lack of awareness of danger coupled with improper or no supports can put a child or adult with ASD in a very dangerous and possibly life-threatening situation (i.e. wandering and getting lost).
ASD is not the only medical condition that can put a person in a life-threatening situation.
Down Syndrome, for some people, can cause serious and terminal illnesses that could lead to death.
Scott Widak, 47, died of liver disease.
Kristin Kirton, 22, died of Leukemia (ALL).
Martin Ryan, 43, died of 26-day starvation.
Sunday, February 26, 2012
One of my on-line friends', David Light, lives in Seoul, the capital of South Korea. He teaches English to Kindergartners who are neurologically and physically typical.
What happens to Korean children with Autism Spectrum Disorders (ASD's) when they become adults?
"Why did the study find so many kids in "mainstream" classrooms, not receiving special support? One explanation may be the Korean school system. Children go to school six days a week, 12 hours a day. They don’t have much recess time, have fewer transitions between classes, and spend more time on rote learning."
That's a good educational model, but how would it help people with Asperger's in the school system learn how to generalize this information that typical people do instinctively?
I have a great long-term memory (most of the time). I can memorize facts, mathematical formulas, and other types of information.
"Roy Richard Grinker, a cultural anthropologist at George Washington University who worked on the study, said his own child with autism would probably function very well in such a system."
David told me that he imagined that I would do better if I was growing up in Korea because the social norms (rules) were clearly stated. I imagine the educational system in Korea would have been of great assistance. I saw a video of (from Children Around the World) of typical Korean elementary school students. The great news is that Korea uses universal design to teach students academic skills - visual and kinesthetic (hands on). In one example, students were learning to purchase food and count money with toy food and "play money." This a an excellent example of the principles of universal design - teaching to a wide variety of learning styles.
For people with Asperger's, the skills goes beyond purchasing food and counting money (the simple part). They need to be taught to greet cashiers. If they're working as a cashier, they need to be taught to greet customers. If they're purchasing food and have questions, they need to be taught how to approach an employee or manager appropriately. They need to be taught to make eye-contact with the cashier or customer. Typical people consider lack of eye-contact as a sign of rudeness. The neuro-typical Korean children know this instinctively, but children with AS do not.
What happens after people with Asperger's (the ones who can and choose to go) finish college or university? Korean government handouts?
Korea has a lot of people in bureaucratic positions. These people are employed in government and positions of power. The skills required to work in these positions go beyond technical capability. Communication skills, interpersonal skills, integrity, excellent problem-solving skills (for both people and things) and the ability to empathize with citizens are also extremely important. I don't know anyone with an Asperger's diagnosis who can do all of these things. Even this highly talented and successful adult with AS that I know has difficulty relating to typical people.
However, I heard that people with disabilities are not given a chance to work in Korea. If people with invisible disabilities, such as Asperger's, are not permitted to work in Korea, what will they do all day? It's WASTED TALENT (any geographic location) to deny adults with AS the opportunity to work and contribute to their community. People with AS thrive on structure and stability, and employment provides that (except if your employer rarely shows up). If someone with Asperger's is denied that structure, stability, and opportunity - anxiety and panic erupts (think: emotional problems and reactions). If someone with Asperger's gets bored, like Gary McKinnon, that person can get get illegally creative. It's good for business to hire adults with Asperger's. It hurts society (any location) when you don't allow them to work.
Why do Korean businesses not allow people with physical disabilities the right to work?
In Korea, businesses don't want to hire people with physical disabilities because a wheelchair makes someone "look bad." The reason is that Korean people are obsessed with "beauty," so a wheelchair is an "interference." From the logical standpoint, this is baseless discrimination.
Productivity isn't measured by your ability to walk, and many people who can walk have higher absenteeism and perform below the company's standards.
Unfortunately, because the business perspective doesn't exist in Korean culture, people in wheelchairs are not allowed to be employed. They receive government handouts, so they can live below the poverty line. The business perspective employs people based on qualifications - including technical, communication and interpersonal skills, work ethic, personal characteristics, and first impression. Companies that practice the business model do NOT discriminate based on personal equipment such as a wheelchair.
Saturday, February 25, 2012
I know MY brain BETTER than anyone else. That includes (but is not limited to) parents, professionals, etc. even with the best of intentions (which many times they do).
You've gotten the talking down, just not the LISTENING.
People hurt me, both physically and emotionally.
I was ignored by my peers in elementary, middle, junior high, and high school.
I was bullied, both physically and verbally. Think: a death threat ("I will kill you.")
They called me retarded. I DESPISE the "R" word. Even if used correctly, I do not have an intellectual disability.
In my life I tried to make everyone happy, while I HURT and HIDE. It's MY TURN to decide who I WILL and will NOT please.
By Kim Stagliano
"Managing Editor's Note: As far as we've come with overall autism awareness, the reality for day to day living for our loved ones as they grow older is grim. Ben (in the story below) has Asperger's syndrome. My children have full autism. The diagnoses differ. On Thursday night I spoke to a group of parents and providers at a therapy center in my town. I stressed, as I always do when I speak, that the autism spectrum is not a hierarchy of "us" down at the bottom and "them" at the top with Asperger's. My friends whose sons have AS worry just as much as I do about what the future holds for their kids. Their troubles are more real world - often more dangerous - because their kids will live very much in the neurotypical world, whereas my own will be somewhat sheltered in the special needs system. I'm as sharp as a razor as I describe autism as a horizontal spectrum - not vertical. I've had it with the shiny, happy horseshit of acceptance and awareness - that's a no-brainer and an excuse to raise money and do little else. We need paid training, media messages that teach the differences in our kids, support programs for employment and post-secondary schooling. If I see one more autistic kid solving number problems on TV or being the quirky genius I'll scream. Are some of our kids able to that? Sure. A handful. The reality of autism from lowest functioning to Asperger's is a hostile world that does not understand them, know how to work with them, or respect them in the least"
Asperger's Syndrome, or high-functioning autism, as many in the ASD community including myself like to call it, is not a different version life or "Natural Variation" (yep, that's the title of a blog by a parent who has Asperger's).
Autism and Asperger's are serious disorders which require supports, services and accommodations in post-secondary education (college), community employment, and housing (supported living or independent living with supports). I'm sick and tired of the "awareness" campaigns. I'm aware already; I have been AWARE for 24 years. Acceptance? Yes, please accept the fact that I learn differently, think differently, understand differently, and will react differently. I'm not a genius - not by a long-shot (I live in Ohio, and I didn't even pass the Ohio graduation test, the standardized test designed to "prove" knowledge.)
Am I quirky? You bet! Am I good with numbers? Yes, I am. I was in Honors Algebra I in 7th grade for part of the year (before the class became too fast-paced). Am I "Rain-man?" Nope, not even close. And I don't want to be! I am intelligent, eccentric, friendly, have a pretty good long-term memory, developing a sense of humor (thanks to Kim Stagliano), good at math (except word problems), a computer geek, and have an amazing attention to detail (which is why I have my office job).
Understand Me? First you will need to learn to LISTEN. SHUT-UP and LISTEN (as the girl in Princess Diaries says). LISTEN to what I TELL you. DO NOT give advice, unless I ask. DO NOT help me; let me show you how you can best assist me. Don't finish my words, sentences, work, etc. unless I ASK you to.
Know How To Work With Me? Work WITH me, don't try to lecture shit at me. Talk to me like you would talk to any other person. Remember, I might take things literally, not understand a joke, etc. I'm working on that, and I will never, ever give up!
Respect Me? Don't talk about me in the third person, talk DIRECTLY to ME, talk about the same range of topics that you would talk to any other person. I like to talk about ASD and other disabilities; however, I like to talk about other things as well. If you're feeling uncomfortable about a situation, please let me know. I can't understand mind games, and I DO NOT want to play them!
Also, please DO NOT threaten me if you are angry, especially if it at work. It is considered - whether you have a disability or NOT, inappropriate workplace behavior and can cause a hostile work environment.