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Stigma against mental illness ’
Monday, December 17th, 2012
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
I held his hand a little bit tighter this weekend.
Friday night I rushed home from work and hugged and kissed my six-year-old son, Norrin. Later that evening, I held him close as I read him a bedtime story. About halfway through, tears started streaming down my face. I thought of all the parents in Newtown, Connecticut who couldn’t read their baby a bedtime story.
The last few days have been heartbreaking. Our nation is grieving. Like many of you, I have been glued to the news. Watching, crying, aching, praying. I cannot imagine the pain and the grief of the families in Newtown. We live in a world with so much senseless violence. And I cannot help but wonder: Is there no safe place for a child?
And in the wake of this horrific unspeakable tragedy, many autism parents are coming forward defending autism, defending their children. Miz Kp of Sailing Autistic Seas writes, “I am defensive because the inference that autism is the reason for these horrific killings is misleading and erroneous. Parents like me cringe every time a news reporter reports this as a known fact. Our children already live in a world where they are stigmatized. This is not helping.“ The shooter has been described as possibly having “some form of autism.” And as a community, we are wondering how do we explain this horror to our children and how do we explain to everyone else that autism has nothing to do with such violence?
This isn’t the first time autism has been linked to mass murder. Back in July, a well known journalist made a statement about the Aurora killer being somewhere on the autism spectrum. Autism is a word so many parents fear to hear. And these statements perpetuate that fear.
Hearing reporters once again state that the shooter may be somewhere on the autism spectrum, followed by the words, mental illness and/or personality disorder – implies that one has to do with the other. It implies that autism is a factor. There are still so many people who have no idea what autism is. To have it associated with individuals responsible for such heinous crimes against innocent people—children…I want people to be aware of autism. But this is not the awareness I want.
Autism is neurological developmental disorder. Autism is not a mental illness, nor is it a personality disorder. There is no link between autism and premeditated violence. I am grateful to the journalists who are taking the time to clarify this.
I keep hearing on the news that individuals with autism lack empathy. As a mother to a young son with autism – I do not believe this to be true. It’s not empathy they lack, they lack the ability to read facial cues. So they may not understand when/if someone is sad, angry or hurt. Norrin understands these things, on the occasions he sees me crying – he’ll bring me a tissue to wipe my tears.
Monday morning, I will pack Norrin’s backpack, help him put on coat, kiss him goodbye before putting him on the bus to his school more than twenty miles away. I will hope he has a good day and that he returns home to tell me about it. I am grateful that Norrin goes to school where the staff, students and parents of students understand autism.
But not all children with autism go to schools where everyone understands. Kids with autism are often misunderstood by their typical peers and are often left out. There are many young men and women with autism in college. Please do not ostracize them more because you fear them.
Norrin is unaware of the tragedy. I am grateful he can hold on to his innocence a little bit longer. One mom on my Facebook page said she was going to write a social story for her sons on the importance of ”follow[ing] the teachers instructions during events like this for their safety.”
But there are so many children who are aware. And they will have questions. Please assure them that autism had nothing to do with it. Please assure them that autism is nothing to fear.
One mother (Jill of Yeah. Good Times) was prompted to write a letter to her school district explaining what autism is and isn’t. In her letter she writes: “What happened in Connecticut required methodical planning of a deliberate and tremendously violent act; this is not typical behavior of an autistic person.” Jill closed her letter encouraging parents to contact her if they have questions. She also welcomes other parents to share her letter with their school districts.
My heart goes out to all the families and friends of Sandy Hook Elementary. It is a tragic loss none of us will forget. We will always remember the faces and names of the sweet children and brave teachers taken away too soon.
And I hope that we remember this horrific act of violence was not a result of autism.
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Autism, Children With Special Needs, Disability, Must Read, Special Needs, Special Needs Parenting, To The Max
Tuesday, August 7th, 2012
Later today, Marvin Wilson, 53, is scheduled to die by lethal injection in Huntsville, Texas. Nearly twenty years ago, he was allegedly involved in the kidnapping and shooting of a police drug informant. He’s been on Death Row since 1998. Wilson is cognitively impaired—”mentally retarded,” as attorneys and the general media typically describe him.
If you are anti death-penalty, you already care about this case. If you are parent to a child with intellectual disability, however, you should definitely care.
In 2002, the Supreme Court ruled that “the mentally retarded should be categorically excluded from execution.” It basically left it up to states to determine who fell under that definition. Wilson has an IQ of 61—reportedly the mental age of a 6-year-old. A doctor diagnosed him with having “mental retardation.” Wilson’s lawyers have said he reads and writes below a second-grade level, and has been unable to manage his finances or hold down a job. His sister has said he remained “childlike” as an adult, one who sucked his thumb at the birth of his child. His attorneys have suggested additional DNA testing needed to be done to verify he is, in fact, the murderer. State lawyers have contended that Wilson’s IQ test was inaccurate, and that other tests have shown his IQ to be above 70 (the minimum competency standard). They claim he was an adept criminal who dealt in drugs and street gambling. They know there is intellectual disability; they just don’t think he’s disabled enough.
The story has become a hot rod for those opposed to the death penalty (Wilson’s injection will be the seventh in Texas in 2012). It’s been a point of debate about a state’s right to interpret law and define what is and isn’t considered “mental retardation.” It’s also become a humane cause for concern, this executing of a man who very well may not have known full well what he was doing.
As I’ve mulled over Wilson’s fate, I’ve wondered about potential prejudice against a man with mental disability.
“Mentally retarded,” the longtime medical term to describe those with cognitive impairment, has morphed into a slur. “Retard” is now a synonym for “loser” and “stupid.” The word perpetuates the idea that those with intellectual disability are lesser human beings than the rest of us. All this is why, in 2010, Congress banned the words “retarded” and “retardation” from mention in federal health, education and labor laws; the preferred wording is “intellectual disability.”
“Mental retardation” is a defunct and derogatory term. And yet, Texas newspapers and TV stations have continuously lobbed it around to describe Wilson. I’ve cringed every single time I’ve seen the words crop up in my Google Alert (most recently: “Killing the retarded no big deal in Texas”).
Is it possible this depiction of Wilson as “mentally retarded” somehow swayed the jury not to pardon him because of his mental capacity but to convict him for it? What would it matter, some might have thought, if a man who may have committed murder but is clearly not a worthy human being was put to death?
These are the thoughts that cross your mind when you have a child with intellectual disability, as I do
These are the words that make you fear for the way the world views your child.
And today, these are the concerns I have about the pending death of Marvin Wilson, a man whose fate might have in party been sealed because of his intellectual disability.
From my other blog:
Would you call my child a retard?
If you ask people not to use the word “retarded”
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Photo: Lethal injection room, Wikimedia Commons; Wilson, AP Photo/Texas Department of Criminal Justice file
Execution, health, Marvin Wilson, Mental illness, Stigma against mental illness | Categories:
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Tuesday, July 24th, 2012
Last night I sat on a friend’s sofa at our book club gathering, blinking away tears. We weren’t able to focus on the book we’d read; instead we were discussing the Colorado shooting, its victims, how dazed and drugged up James Holmes seemed in court. We talked about the calculated effort he’d put into the attack, down to dying his hair bright red like The Joker, and how easy it was for him to amass his weapons. We shared details we’d heard about Holmes,24, a doctoral student enrolled in an exclusive neurosciences program run by the National Institutes of Health who dropped out in June. Years ago, I’d read on CNN, he worked as a counselor at a Los Angeles camp for needy kids.
“Just what went wrong in this man’s head?” I wondered. My friend who’s a psychologist spoke up. She believed that James Holmes had a schizophrenic episode. She noted that for clients over age 18 with mental illness, she is legally not allowed to discuss their issues with their parents (although if one ever spoke of committing violence, she was obliged to report that to authorities). She spoke of the stigma of mental illness in this country.
There’s been conjecture in the press that Holmes was depressed. The truth about his mental state (or the closest thing to it) will emerge from the extensive psychiatric evaluation he’ll undergo, which will track his life from infancy to help determine how he thinks, feels and communicates.
There’s been so much talk, in private and public, about gun violence. But here’s a stat not making headlines: About 14.8 million American adults, 6.7 percent of the population, have Major Depressive Disorder. It is the leading cause of disability in the Us. for ages 15 to 44, according to the National Institute of Mental Health. About 2.4 million American adults have schizophrenia.
Evil is not the reason behind mass murder like this. Access to guns isn’t the root cause. Autism is certainly not the cause, as MSNBC talk show host Joe Scarborough mused (and later apologized for). Mental illness is.
Dave Cullen, author of Columbine, a book about that school massacre, notes in a recent New York Times editorial that the press painted Eric Harris and Dylan Kelbold as “two outcast loners” who sought revenge against the jocks who bulled them. “Not one bit of that turned out to be true,” he says, and goes on to talk about the boys’ journals. Harris’s was filled with hate—a clear psychopath. Klebold’s was full of self hate and misery. He was depressed; in an unusual turn for someone suffering depression, he turned his anger outward.
While there’s little stigma attached to buying a gun, the one against mental illness is strong. So strong that, in fact, two-thirds of people with a known mental disorder never seek treatment, per the National Alliance on Mental Illness (NAMI). That includes millions of teens, ashamed of asking for help, noted research published in a recent Journal of Nursing Measurement. The problem starts during the formative years, when kids in need of mental health assistance don’t get it because of parents’ shame. As many as 85 percent of children who need mental health treatment “are not receiving any because of the perceived stigma associated with mental illness,” according to research cited in an article in the Health Science Journal.
Last month, Canada’s Mental Health Commission hosted a three-day conference dedicated to mental illness stigma. “Stigma and prejudice of mental illness is still a serious problem….the perception remains in some sections of society where it’s seen as a personal failing or weakness,” notes psychologist John M. Grohol, founder of Psych Central. ”While Health 2.0 is all the rage in healthcare, few talk about Mental Health 2.0.”
What all this means is that many other James Holmes are out there right now. Growing up unhappy, sad, miserable. Turning into unhappy, sad, miserable teens and adults who could become very, very angry at the world.
Mental health experts continue to speak out against the stigma against mental illness. NAMI’s Stigma Busters initiative asks people to report negative portrayals of mental illness in the media. But until people open their minds, and until this country starts a major conversation about mental illness—one that’s as prevalent and passionate as the one about guns—there will be continued violence committed by people like James Holmes.
From my other blog:
Let’s not blame the parents
Image/CNN video screen grab
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