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The Write and Wrong of Autism in the Media

Mia Writing Sample

By Kim Stagliano

What if you did not know me  and you saw that photo above,  what would you think?  That I have a nice 4 year old, perhaps? Would you smile if you had no idea that I am a Mother Warrior with three daughters on the spectrum? Not just on the spectrum, but on the "wrong side of the tracks" of the spectrum.  Huh? Wrong side? Hell yes. We're seeing the full assault on low verbal, behavior-intense boys, girls, teens, young adults with autism right now in the Alex Spourdalakis story.  We couldn't get the attention of a single media outlet while he was in the hospital. Now, after his gruesome murder, the PR machine has slipped into gear and roared out of the gate to make sure that somehow, anyhow, the non-genetics segment of the autism populations would be tinged, no make that engulfed from head to toe, in guilt.  Especially anyone associated with gut injury, and you know who that means, dear AofA reader.

(BTW, I've never apologized for a single parent who has murdered his or her child - with or without autism. And I continue to make no excuses. We have a moral obligation to our kids to keep them safe - even if that means safe from ourselves.  My chapter "Mother Superior" in my memoir is all about the string of murders in our community including a mother in England who poured Drano into her son's throat, none of which have been used/covered like Alex's.)

The photo above is the fridge worthy type of art most parents of preschoolers display with pride. Except that it is the 12th grade work of my 18 year old daughter. Oh. Insert awkward pause here.

Yesterday the PBS kids show Arthur was on, and they aired the episode about Asperger's. It was done fairly well. The child  with AS had a meltdown during a playdate and his typical peer felt confused and scared.  After the meltdown the typical child talked to a friend who told him his uncle had Asperger's.  They proceeded to show a framed newspaper article about the uncle's Nobel prize in science as a local professor.

Take a look at the photo above.

Autism in the media looks very little like what my three daughters have - very litte indeed. Ari Ne'eman speaking for my girls as an expert?  A farce.  Even Temple Grandin, a female herself, looks nothing like my girls who actually have far more emotion, facial expression and ability to be physically loving compared to what I have seen in Dr. Grandin over the years.

How many times have you said (like I have) "when you meet one person with autism, you've met one person with autism."   My girls matter. And their autism is a valid and real, even if rarely acknowledged in the media portrayals.   Your child too.

Write?

House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 






 

 

Comments

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Kim said, "We have a moral obligation to our kids to keep them safe . . ."

Yes. However, the huge and completely unreasonable circumstances were imposed or created by (1) doctors and (2) Big Pharma and (3) NIH and other gov't entities --

This is, once again, decisions from far away creating disaster and ruination in the live of ordinary people. As in, for example, the entire mortgage-banking-financial meltdown and subsequent depression.

Ordinary people pay a very heavy price for bad decisions "at the top." Over and over. Autism from toxic substance including vaccines -- no exception

my parents will tell you im not evenm close to temple grandin or any of the one who speak .i realte more to carly fleshman .i do speak about what it like for me having autism .but that didnt happen till my 30s .an most say im more realble then temle they say im more like whgat there kids could be like .i am hf now but not hf like those who want to speak for us .i get upset with that group of super hf people they so close to nt they cant realte to anything i been through to get were im am .or things still struggle wih .i type one letter at a time on my laptop an ipad .my parents were told i never learn do do the coumputer or anything baly put me away .everyoes goals are diff ,but im in the millde some my friends have aspbgers they dont struggle like me i have the yucky autism ttummy issue an stuff .i come along way .but i no what your saing only hen it bad we get att .i deal alot with those who think im not as hf as im soimetime it like my autism is the boss of me make me behave in ways cant help .meds help alot but having severe sencoirey iusse is no fun eatyhir. im living on my own now with help .were everyone dose this even some super hf asd in there 20s .i did it in my 40s .i can drive but only were im comfeble .i guss we have un even .skills .but i cant deal with those self autisc groups they do not speak for us

We need to focus on the families who are struggling with severe kids. There are many programs and services in my area for kids with Aspergers and HFA but my son does not qualify for any of them because he could not function at that high a ratio safely. My son has no symptoms of Aspergers. He has empathy and understands social cues well but he can't talk or do anything really. I feel like he has more in common with a paralysis victim than Aspergers. Then there is all the pain and suffering that causes him to scream and self-injure. No educational therapy will address this. We have been doing biomed for 10 years with no success. I still believe he has a gut imbalance.

our kids NEED more biomed research!

There is a ton of new research in the area of probiotics and customizing them to each person. Our kids need something like this. We need more gut research. The diets don't help every child but something will.

There is autism the personality difference and autism the illness. They should not be given the same name. The problem is the more interesting personality difference type is dominating the media and all the programs and the severe kids are left to suffer.

The only time I recall seeing a more affected child with Autism in the media is the Paskowitz's family reality show....'the Swell Life'. Sadly not many people saw that series.

Showing ASD's in a good light is merely a tactic to make others feel OK about a tragic epidemic. Unfortunately we know the realities all too well.

Kim, one day, not soon enough though, the public will realize what living with a child on the spectrum is really like, not the cheery funny version the media pushes.

I wish my teenager wrote as well as this.

Let's pick a day--anniversary of something significant--Alex's birthday? --- when we all bring all our kids to our state house, or our city hall, or the Capitol, no matter how they are behaving. We bring our stories, our signs. We ALL do it wherever we are, just like the freedom marchers. We take off work if we can. We drive other families if they need it. . . And if you can't bring your child, you can't leave your home, let someone with a more able autistic kid bring a sign or a childsize toy (we have a toddler sized bob the builder) to represent the one who couldn't come. IF we ALL flooded ALL the statehouses etc, and they had us in the lobby with sensory issue children, with "inappropriate" children, with sweet children who are clearly impaired, plus the lucky ones (like my son) who have partially recovered . .. would the sheer numbers finally wake them up? The hidden children they never see because the Mom is at home dealing with crapisodes? We need all the children, the sheer numbers, to be seen and heard. The AWARENESS needs to be the citizens awareness that SOMETHING IS HORRIBLY WRONG. Thoughts?

I've seen so many photos of the beautiful Mia. Seeing the writing on this makes me so sad.
Anne

Filicide is complex. But who on earth would excuse it? What I see is people attempting to understand why parents kill their children, hoping to prevent it. That means re$earch, including investigations of psychotropic meds that backfire.

But sadly for some unlucky folks, crazy comes knocking, uninvited, and doesn't wait patiently -- it breaks down your door.

Ari Ne'eman et al, are only examples of fauxtism. Fauxtism embraces the irony of some Asperger's Syndrome people who are fake autistics, who in turn complain about people who fake having Asperger's Syndrome. Having assumed AS is a good reason to be a social jerk at parties and other places, it seems. So, there are two level of autistic poseurs. The first are Asperger's Syndrome like Ari Ne'eman who are not even on the autism spectrum. The second are people who fake being Asperger's Syndrome. When did faking disability become fashionable?

I have read several of Temple Grandin’s books, such as Thinking in Pictures and her marvelous new one, The Autistic Brain. To me she is an inspiring person, a beautiful human being. As to her lack of warmth, she readily admits to that. However, in her new book she is so supportive of children’s rights to develop their talent (or just whatever interests them) that I would have to say she sticks out as warm! Come to think of it, when Grandin advocates against cruelty to farm animals she shows maternal instinct.
As Kim says, when you’ve seen one, you’ve seen one.

I feel that I too need to weigh in on this. I have sat back for a while and tried to just live life the best I could with our situation (in case you haven't heard, six children on the spectrum).

While trying to earn a living, truck driving, we came to a very difficult decision in our lives. The home we lived in for many years and the one seen in our interviews and documentary, we needed to move out of at our landlord's request.

It was difficult finding a new home to rent on short notice. The new landlady was finishing the house up as we were moving in and noticed that Sarah and Ammon were bit on the destructive side. Poop on the floor, you know, things like that.

So we were told that unless something was done we would have to have our lease canceled. I was not aware of this and was out of town driving at the time. The bottom line, they had to go into the state foster care system.

We didn't own our own home, resources to help had dried up and was virtually nonexistent, I wasn't there often enough to help and the children were getting older and harder to handle.

We still have the other four children with us, and are doing quite well, considering. But, we sure miss Sarah and Ammon. I'd like to have them back some day, but the only way we can do that is to have a home of our own and the money to pay for live-in help.

By the way, Robins challenges, besides the children of course, are fibromyalgia and Epstein-Barr syndrome. If you don't know what these do to you, it's like you have the flu, a cold and are totally exhausted 24/7. It makes for a tough day each and every day.

Someone mentioned in the previous posts about April and Autism awareness month. Even though I appreciate "awareness" I'm a bit tired of it. Awareness is all well and good but action is what is needed.

Action from government? Don't make me laugh, unfulfilled promises are the standard there! Insurance companies? Tell me of a good one out there that's taking care of all your needs, I am sure the rest of us would like to hear about it.

But action is needed, but by who? I have been attempting to get other parents of autism involved through my Facebook page – https://www.facebook.com/john.kirton56 and a Facebook fan page – https://www.facebook.com/pages/Autism-Now-and-Forever/158431127527871 that I put together nearly a year ago.

If a difference is to be made in our lives and the autism community as a whole I feel we need to join forces. We can't rely on anybody else, can we?

I for one would like to make a difference, in my life and in the lives of of other parents, including you guys. I hope Kim approves my small "plugs" and we can get something done.

Who's with me?

Autism is political and has been for years. The help our kids need won't come until "we stop calling it autism" and call it what it really is. And that won't happen until the politics change. Contact your US House epresentatives and urge them to support Bill Posey's vax vs unvaxed bill 1757. At least it's a start to tearing down the wall of political deceit.
Maurine

A sane mind can perceive itself to be in a pit so dark and so deep that the only way out is death, and from all accounts, the pit was dark and deep.

We are social animals. We are all responsible for the way that we have set up and accept the rules of society, rules that can devastate some among us.

To those that scream, "don't make excuses...!", I think what I'm hearing is a need to wall this thing off: Don't let it come too close. It's too horrific. We (as in society) had nothing to do with this. They (the mother, caretaker and child) were defective (violent, insane, etc.) and had nothing to do with us. We are nothing like them. Only they are responsible.

It isn't that simple.

2 points
1. When the infamous 'pink letter' came out, many responded by talking about very accomplished people with autism. This really bothered me because hate mail is hateful whether there are accomplished people with autism or not. It is not any more justified if the person you are writing it to has a low IQ.

2. Has anyone else noticed that the same people who viciously attacked Dorothy Spourdalakis, calling on the angry mob with pitchforks suddenly changed their tune when it comes to Kelli Stapleton? Why the double standard? Because Kelli Stapleton has a blog? Because there was a picture with Andrew Wakefield and Alex Sprourdalakis? Really? That's what people base it on?
Dorothy Spourdaliakis - An evil, hate filled mom who killed her child because of his disability
Kelli Stapleton - a stressed out mom with PSTD that made a very bad decision in a time of desperation.
Does any of this make sense?

Kim,
You are so right on..... People who do not live with Autism walk around thinking Autism is just an "odd child" with social issues, or that they all have an amazing savant ability....I get so tired of people, who albeit are well meaning, send me stories of Autistic people doing amazing and inspiring things. Singing, playing the piano, playing basketball for Michigan State, giving speeches, etc etc etc. I am so happy for that person and it IS inspiring, but it does not apply to my situation AT ALL. I am just getting through the day, trying to get my kids to eat anything, managing nuclear meltdowns, and cleaning poop off bathtubs, walls, and trying to figure out how to get them the therapy they need. The media has done nothing to educate people on the reality of Autism, and with numbers like 1:50 and climbing, they won't have to worry about it...... The public will learn as the REAL Autism will affect them soon enough somewhere in life. A friend just told me a story of going to the beach with their autistic 7 year old and he ran across the beach and attacked another child for his cotton candy, and as the mother of autistic boy ran over and was apologizing saying " I'm sorry, he doesn't know any better, he has autism, the other mother of the attacked boy says in broken English " don't worry, don't worry, we have the autism too!" It. Is.Everywhere. When will it get the real attention it deserves???? I hope soon.

it's true...our kids are the same in a lot of respects, but most of all not the same. There seems to be a disconnect what autism is in the media. I wish that a brave autism mom who has the "unmitagating gal" to have a reality show on autism would do so, to show the stuff we go through, ya know? But who would? Seriously, I look like a train wreck most mornings, and the crapisodes are epic, not to mention the meltdowns, oy...and the driving scenes...oh, and the part where we stick up for our kids in public, priceless, or at a neurologist appointment...which I had to do last week was something out of New Jersey Housewives....seriously. No really...I had to tell a doctor that he was being prejudicial against my children by not offering them biomedical intervention because they are ADULTS with autism instead of children (I think the excuse was something like IV's for your kids would make them flip out, when I told them repeatedly, they were calm as lambs with them, anyways )...mind you on his website, it said he treats adults, just didn't word the word AUTISTIC ADULTS. Yeah...I had to do this last week....at the end of the day I received an email stating something to the effect that "they handled our appointment wrong and knew they did horribly" by me and my kids...yeah... I mean....this would have been a great episode for a reality show. And it's all so REAL...cause...yeah, I go to bed every night wondering if the world will ever get it? That...you caused this in my children, and now YOU ALL have to fix it. But the reality is, we haven't yet met the AMA/AAP head on enough with our kids....and I mean, legally, they must treat our kids with biomed and interventions that HELP THEM.

I reflect on the time when my son had a serious seizure resulting in stopping of his heart, with a next day surgery for a heart pacemaker (thanks mito)...anyways, their reply to us was "we really don't know why this happened", or better yet, "we don't know anything about autism" or "we don't really know what causes it"....our remark back to them was "don't you think it's time you learned when there is one in 88 kids (worse than that now) with autism? BLANK EXPRESSION, DANG....

I too feel the media portrays autism as a unique gift (which they are in some respects, because, they are beloved children of ours), but something like a circus side show, or novelty, or look, he's a genius but he can't relate to people king of thing? I mean, the autism I KNOW, is a relentless struggle to cope with gut pain, seizures, inability to communicate, aggression, nutritional deficiencies, immune deficiencies, viral and bacterial and fungal persistence...you know...like AIDS? (by the way, it may be close to that, retrovirus and all)...but I digress...

Autism is manmade, period. If it happened in utero, it's because mother has been gotten to by HER vaccines, HER toxic levels and inability to detox or handle infections with autoimmunity. It's also about how we birth our kids (long diatribe excluded)..and lastly what our world "dishes out" like Fluoride, Gmo's, EMF's, Vaccines, Pollutions numerous...

SIGH...and giant SIGH...trust got me here...another sigh...it should be called a TRUST MANKIND disease...sigh.


I cannot think about this horrific situation without also thinking of horrible stories about how people who are abused can become the abusers. I know one usually hears about that in the context of child abuse, but what happens when a human being ends up feeling and believing that they have no real support, in any corner of their lives. And if they find some, can they believe it will last and will something good happen? There are many kinds of abuse, I'm sure. How long does a person get psychologically and emotionally beaten before they give up. Does that person not deserve the smallest level of human sympathy or a semblance of pity? And at the point of giving up, can you really say they are in their right mind anymore? It is tough for parents even in normal situations to separate themselves from their childrens' pain. That's not even touching on the fact that it probably not unusual for an autism parent to spend all their time trying to help their child while ignoring their own mental and physical health. Only those close to the situation would know about where those women are on that spectrum.

There is the general idea, isn't there, in suicide, that the victims think that they just can't take what life has handed them anymore and want out and/but may think their loved ones would be better off without them. But what if they are suicidal and DON'T think the person would be better off without them? From a psychological perspective, that must be the worst of all scenerios. Maybe it should not be called a murder-suicide but rather a suicide-murder. If a Jewish parent in a concentration camp was allowed to have kept their child with them but they were all being tortured and starved to death and witnessing it on a daily basis, would that parent think their child will be better off when the parent herself dies and the child is left to himself or the devices of those running the camp? I'm not sure I can think of a better parallel. Is not the whole autism epidemic a concentration camp without walls?

If the mother cannot separate from her child's pain (which in other cases too much separation would constitute some abstract basis for neglect), she becomes guilty of what? Too much empathy?

Both the medical field and educational field seem to repeatedly come up short for what they can offer autism families. Autism fit no previously existing pattern when it became a scourge. Where will it fit in the patterns of the existing court system? I hope these women have good lawyers and find themselves in a courtroom with people who have humanity left in them and not a bunch of next-gen nazis.

I am not condoning their actions, but if I was on a jury I could not ignore the mitigating circumstance. I am hoping that justice prevails. Is there such a thing as guilty by reason of insanity vs non-guilty by reason of insanity. Would such a designation lead to newly created consequences in the justice system. Would those consequences be for the worse or the better in the long run. (Are the special courts for vaccines a benefit to society or a disservice? Do humans sometimes inadvertently lose the war by focusing on the short term battle at hand? What do we lose by letting people treat this as a black and white situation.)

Maybe at the very least, the lack of justice in medical and education fields that created this tragedy will force the justice system through a jury to reexamine the factors that caused this, and that it will force the medical and educational systems and politicians to prevent such future crises. I wonder if Henry Waxman is watching? If these women go to trial, he should be right up there next to them.

Legal insanity is generally governed by the traditional "McNaughton Rule," looking at whether the defendant was able to appreciate the "wrongness" of the act at the time. That will be the jury's decision, but the attempt at suicide after Alex's killing and the fact that two people were involved suggests that this is not a case of legal insanity. On the other hand, the jury should have the option of finding guilt under a lesser charge (as happened in the McCarron case).

In any event, we need to let the court system work out the question of guilt, and have a reasonable discussion about what could lead a mother to lose hope. Let's be careful, though, that any discussion of the blame that might be placed elsewhere for this crime is not offered as an excuse for murder.

Write on, Kim! I think as much as anything it has really hit a nerve for those "Science"bloggers that now there has been a glimpse into what autism really is for many- severe and non-verbal- not just those who are milder on the spectrum and can even find employment like Ari and Temple. The fact that poor Alex was very disabled with autism AND seemed to have pain/bowel problems seems to really have riled them because it is just possible that Dr. Wakefield was right in his case series.
I agree with the others that this is the direction that public awareness must go to now- showing the more severe side.

The media doesn't show the struggling side because that would alarm the public, and in a normal world, would spark a need to know why. Those responsible could not let that happen. At least they'll try to put it off for as long as possible.

I really don't know why the media has so much trouble with this concept. Everyone knows there are different 'flavors' of cancer. Basal cell carcinoma = mildest skin cancer = nearly always easily removable in a doctor's office and nothing more to worry about. Pancreatic cancer = nearly always fatal within 5 years.

For next April's autism "awareness", I would love to see a public service announcement: 10 seconds of a well-known geeky TV character with subheading "this is autism"; then 10 seconds of poor Alex raging and writhing in his hospital bed with subheading "this is autism"; then 10 second of someone like your Mia, quietly, laboriously writing that note with subheading "this is autism". Showing the range of autism - that is true awareness. Not another award for Temple Grandin. I have great respect for her, but she is only one snapshot of autism; the world needs to see the full kaleidoscope of possibilities.

Hi Bob

I don't know to what extent the concept of "diminished responsibility" is relevant to legal process in Illinois. There are potentially levels of mental exhaustion, sleep deprivation and physical abuse, not to mention the blind terror of not knowing how you are going to cope in one or two days time (let alone a week or a month) which by any ordinary reckoning might push these ladies well outside the category of first degree murder.

First degree murder seems to me to be the state washing its hands of its own culpability in these awful events. Some people might think that there should be no such distinctions but in a dispensation where there is it seems surprising (not to say vindictive) that they should not have been operative here.

John

I believe every American deserves a good attorney and full access to all legal options. Kim

Kim .. we agree there is no excuse (apology?) for killing one's child .. regardless of the individual suffering that both the child and the parent were enduring at the moment of the tragedy. NONE.

Having said that .. the criminal justice system is replete with "mitigating circumstances" the accused .. having committed the ultimate crime of taking the life of another innocent human being .. can plead to lessen their punishment when facing a jury of their peers.

None of these "mitigating circumstances" .. such as .. the accused pleading self-defense or insanity .. to name just two .. are meant to "excuse or apologize" for the crime they committed. They are meant as a means for the justice system to establish a legal distinction between the cold-hearted, premeditated murderer who commits murder for personal gain, money, jealousy or just for the thrill of it .. and .. those who can prove beyond any reasonable doubt they were acting in self-defense or were insane at the very moment they committed their horrific crime.

As I understand it .. the lawyers involved in Alex's case have pondered using a defense of "insanity" for their clients .. and .. personally .. I think it best for a jury of their peers to decide whether or not these women were driven to such despair they acted while temporarily insane.

Obviously .. you can disagree that "mitigating circumstances" should be available to ANYONE accused of committing that ultimate crime .. but .. hopefully you will agree .. as our justice system stands today .. these women should have the same opportunity to plead insanity as do ALL other defendants so charged.

Ari and Emily are the Potemkin villagers of autism.

http://en.wikipedia.org/wiki/Potemkin_village

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