Friday, July 28, 2006

My Kid is an Ax Murderer

The Face of a Serial Killer?

Rocky Mountain News reporter Lou Kilzer has penned an article which practically nominates persons with autism as those Most likely to become serial killers. My letter of outrage is copied below:

Dear Mr. Kilzer,

I am deeply troubled by your report of 7/28/2006, "Piecing Together Serial Killer Puzzles Psychiatrists..."

Imagine how surprised I was to learn that I might be the mother of two ax murders in the making!

I fear that in your eagerness to brand persons with autism as potential serial killers, you have neglected to read the supporting body of work by J. Arturo Silva and colleagues, which is related to the study cited in your article. If you had read the body of work, you would find that Silva's work SUGGESTS that SOME serial killers exhibit *evidence* of Asperger's Disorder, which is a *variant* of autism.

Closer inspection of Silva's work reveals that his findings are based on historical case studies and interviews taken with parents and relatives of a serial killers, many years after the fact. None of these fifty serial killers cited by Silva were ever actually *diagnosed* with autism spectrum disorders during childhood.

Instead, the study's authors used compiled developmental histories, based on ex-post facto interviews, to find that during childhood, a few serial killers were reported to have exhibited *some* features consistent with a diagnosis of an autism spectrum disorder.

Silva uses these *retroactive* case studies to support his characterization of a subset of serial killers as having a rare *variant* of Asperger's Disorder or High Functioning Autism. He hopes his work "could lead us to a greater understanding of the etiology of both serial homicide and autism."
Previous work by Silva found that persons with autism only showed, by his statistics, a mere 1 to 3 percent increased risk to commit murder when compared to the general population.
Again, you painfully misinterpreted Silva's work when you correlated a sensationalistic lead sentence with with a statistically signifcant common thread between serial killers--Autistic tendencies.
Throughout the article, you nudged readers towards the inevitable conclusion that people with autism are unfeeling sexual perverts lying in wait for their next murder victim.

What you did not say is every bit as important as what you did choose to report.

Never did you make it clear to readers that sexual violence, criminal fantasy and perversion are not diagnostic features of autism spectrum disorders. Even Silva states in previous studies and commentaries that only a subset of these serial killers *may* have been children with autism or borderline autism.

The *fact* is that persons with autism have a much higher (in excess of a ninety-percent) probability of falling victim to physical and sexual abuse when compared to persons without autism.

Whether serial killers actually suffered from autism as children is likely impossible to prove. But serial killers do share one thing in common with many persons who have autism. Serial killers were often themselves victims of childhood bullying, childhood abuse and/or sexual abuse.
If serial killers, as children, appeared to show retrospective autistic tendencies, is it any surprise that their propensity for murderous violence was more a symptom of nurture than nature?

By failing to explain to your readers that sexual violence, perversion, and hatred of women is not part of the diagnostic criteria for autism, your report is written in such a way that your readership will conclude that all people with autism are likely to kill, rape, dismember, and maim.

Ignorance is a far cry from bliss, Mr. Kilzer. With your irresponsible pen, you have sent autism awareness careening back into the dark ages. Fueling further justification for the acts of hatred towards persons with autism with your inadequate reporting is beyond reprehensible.

I suggest that the next time you attempt to report on a study correlating serial killers with autism, you bother to actually read the source material first. Then I suggest you bother to familiarize yourself with the DSM IV standard criteria for the diagnosis of autism spectrum disorder. (299)

Or, if you truly want to change the world for the better--resign.

A Picture's Worth


Autism as David Sees it

Monday, July 24, 2006

Cure Borgdom Now

While I'm sometimes troubled by the cure autism at any cost advocates, lately, I also feel disturbed by some persons with autism who presume to intuit the beliefs regarding cure of the entire spectrum population. Although I will fight to my last breath for every spectrum member's right to state an individual opinion about "curing autism", I will also argue with equal conviction that one person on the spectrum cannot possibly represent the thoughts and feelings of another.

If one could take the DSM IV criteria for autism and split it down the middle, they'd end up with a reasonable diagnostic sketch of my boys. One child's autistic features represents the other's about as much as the a blood blister represents a melanoma.

Jamie got all the cool stuff autism can bring. While his early years were very difficult for him, I can safely say that Jamie could pose as the early intervention poster child. While he's a persistent boy, and obsessive to the point where he will not let go of a problem until it is solved, he's got a few savant skills to push him over the hump when need be. He's learned to use these bits of genius to impress his teachers and friends when he needs an assist in the social skills department.

Jamie's ability to think in three dimensions and crack any code he cares to allows him to beat the pants off of most anyone who dares to challenge him at video games. Because Jamie is a visual thinker, he's also is an amazing artist--as long as he's drawing video game characters!

Granted, I doubt Jamie will ever aspire to be Mr. Party Animal, even though girls have been vying vehemently for his affections since he was three-years old. (Jamie's a born stud-muffin. But I don't think that's listed in the DSM IV. )

Jamie knows he has autism, and it clearly doesn't trouble him much. If you ask him, he'll tell you, "so what, big deal, when's dinner?" If I were to ask Jamie if it would be ok to just up and cure him of his autism, I'm pretty sure you'd be met with a resounding "no way, Jose!" At least not before he unlocks the last character in Super Smash Brothers Melee.

I support Jamie in his choice to vote for "no cure." Jamie clearly enjoys being Jamie. Jamie with Autism.

Sadly, our family has also experienced the devastating flip side to Jamie's autism experience. If Jamie got the better half of the DSM IV, then his big brother, David, got the half that makes us wonder sometimes what we, or our beautiful child, ever did to warrant his having been committed to Hell on Earth.

As David's mother, I want you to know that I love this child with a passion few can comprehend given the often tremendous difficulties involved in keeping David's behavior stable. But I will also be the first to tell you that it has to suck to be David.

You can see by the photo I've posted above this entry, that David got the severe sensory disruptions and painful hyper-sensitivities commonly associated with a diagnosis of severe autism. David must wear noise protection headphones nearly all the time as even the sound of his own breathing brings him unbearable agony.

Clothes hurt David, too. He will never wear holes into the knees of a favorite pair of blue jeans, for their woven texture causes him to writhe in discomfort. He cannot wear button down shirts, because the sensation of the button attachments pressing into his skin incite him to epic spells of head-banging.

Smells hurt David, too. If a person wearing perfume enters my home, my son will sniff everyone in the house to find the offendor. Then he will show them right to the door. Should they refuse to take his hint, David will begin slamming himself into the walls with a fury severe enough to leave gaping holes in the drywall.

Digesting his food hurts David. David has suffered from severe, acidic diarrhea nearly every day of his life, and having a bowel movement often sends him into such extreme spasms that he can scarcely catch his breath for shrieking in misery. Eating is difficult as most food textures and tastes cause him to gag.

School hurts David. Until I could convince my son's school district to educate my son in a dimly lit, sound protected room, David could not manage to focus for one moment. He could not stop hurting himself or others. Exposure to cavernous hallways and stark cafeterias with their miserable acoustics and harsh lighting is tantamount to torture for David.

Exposure to florescent lights has been, through careful data taking by a certified behavior analyst, proven to incite my son into rages severe enough to cause him to jump through windows. Don't believe me? See that scar in the picture above? The one on my son's elbow? He jumped through a window (not on my watch, mind you). That incident required skin grafts. We thought the wound would never close.

David is doing some better these days---specifically since I fired the arrogant and uncaring behaviorists, who refused to acknowledge that pain can be a very real antecedent to outbursts.

You see, when the lights are dim, and the meds are right, and the clothing doesn't hurt, the seizures let up, and the unrelenting pain of his autism brings him abates a bit--my little boy can be present for long enough to tell me how much it sucks to have Autism. The kinds of things he tells me and asks me when he is present enough to use his letterboard independently are the stuff of every mother's night terrors.

"Why does autism hurt so much?"

"Why do autistic kids have to stay home?"

"Why are you afraid of me?"

"Why did God make me like this?"

"I wish I could talk."

"Am I sick?"

"Help me. It hurts bad so bad."

"Autism sucks."

"Help me."

I have a hard time hanging on to my composure when one of my son's higher functioning peers presumes to speak for him. This child will suffer immeasurably for every day of his life. He will seldom be able to summon the words to tell us where and how it hurts. Even if he could tell us just how it feels, there is likely little we could do to help him.

David should be allowed to have a cure if he wants one,without fear of exile from his peer community.

And even as I fight for Jamie's right to refuse a cure, should one come along, I will fight with equal conviction for David's right to advocate for curing autism now.

My children are not Borgs. I don't believe they want to be assimilated.

Saturday, July 22, 2006

Dreaming Little Dreams.....

Someone had the gall to say to me recently that the real tragedy of autism is revealed in the lost hopes and dreams of the of the families involved. As evidence to support her case, she spoke of lost incomes and broken dreams. Diminished lives. Soured futures.

This sentiment seems to be taking root and spreading across the mainstream media. Even a portion of the "cure autism" community has jumped on board. A recent film was released by one such organization which hammered home the horrendous difficulties families suffered by caring for children with autism.

Granted, this life has its hard times, often to the point of grueling. If one chooses to dwell on the negatives, the shattered dreams can surely seem countless.

Having birthed and raised two lovely boys with autism, I've had cause to put many a gilded dream aside. Because my son's have autism, we've certainly known disasters, disappointments, and financial challenges that most families could not begin to comprehend. There have certainly been days after weeks of sleepless nights when I have contemplated quitting, leaving, dying, anything to simply get some rest. And I am deeply ashamed of each and every one of those moments.

From what I've observed, living with the diagnosis of autism in a child can also give rise to miracles. Loving someone with autism holds the power not to defeat, but rather to transform a caregiver's dreams for their own lives.

I have seen this transformative power lift parents from the ashes of hopelessness with nothing more to carry them beyond a passionate love for their children and a desperate desire to make a positive change from which all people with autism will ultimately benefit.

I have watched single moms successfully take on educational systems that often seem to work only to diminish opportunities for positive outcomes for students with autism. I have known fathers to publish books in support of their cause, and uncles to make movies designed to broaden awareness. I have known couples who have challenged legislation and who have changed laws. I've met grandparents who have come out of retirement to organize meaningful non-profit organizations. I have watched my own daughter, at the tender age of six, make a televised plea for appropriate early intervention for her brothers. I have watched the kind of miracles unfold that must leave our awestruck Creator grinning from ear to ear.

Call me blind if you want, but I don't see many families who would say that their lives have been laid to waste by autism. I do see many lives transformed into something more meaningful through accepting the call to advocacy. I see in this community a legion of heroes who have abandoned more materialistic pursuits to fight for their children's most fundamental human rights. I am proud to stand alongside these family members of people with autism who do their utmost to build a better world, and to sow new dreams for their children's futures .

If I dwell on it, I might find it strange that I seldom see the families of typically developing children doing their utmost to leave their children a better world. But then again, why would they feel they had to?

I can truly say that I am a woman redeemed by the needs of her children. And what of all the hopes and dreams that I entertained before autism entered mine and my children's lives? You know, beyond writing, what few aspirations I can recall just don't seem worth reclaiming, even if I could.

Saturday, July 15, 2006

Who is this woman????


Assuming anyone cares enough to ask, Liane Gentry Skye is a pseudonym that I have used to protect my children's rights to confidentialty. I describe myself in most cases as the mother of four perfect children, two of whom are living well with autism. I am first a mother, second an advocate for my children and their peers, and finally, a part time writer. I'm sure my children's school district would tell you a more turbulent side of this story! :)

While writing publishable fiction has always stood front and center in my dreams, writing to broaden the public's perceptions regarding persons with autism became the necessary work of my heart.

In that regard, I have had articles, essays and opinion pieces published in such publications as Guidepost's Angels on Earth, Autism Asperger Digest, The Myrtle Beach Sun news, Autism Today, America Online's Soap Box opinion section, The Mothers from Hell Brimstone Bulletin, and several related regional venues.

My writing has led me into some passionate advocacy battles which managed to force several Southern school districts into compliance regarding the civil rights and rights to protection from sexual abuse for persons with autism and related developmental disabilities.

Marketing my fiction sat on the back burner to my children's needs for many years, but I have never stopped working to inch towards my dream. In the breathing spaces between the advocacy and educational battles, I took second place honors, twice, in the Southwest Writers Workshop Writing Contest, for mainstream novels and inspirational writing. My short story, Imprint in the Ice, won Zoetrope All Story Extra's first and only online writing contest. I'm particulary proud of that story as both main characters have developmental differences.

I'm currently writing a novel and middle grade children's book related to autism.

To find out more about my current work, you can visit me at Retribution, Divine.