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Author Topic: NY Mag: The New Wave of Autism Rights Activists - and ABC Coverage!
sndrake
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Given the interest in the alleged mistreatment of 5-year-old Alex Barton ( discussed in this thread), I thought I'd share this article from the latest New York Magazine:

The New Wave of Autism Rights Activists

Excerpt:
quote:
n December 1, the NYU Child Study Center came out with advertisements in the form of ransom notes. One said, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning.” It was signed “Autism.” Another said, “We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It’s up to you now,” and was signed “Asperger Syndrome.” Harold Koplewicz, director of the center, hoped the ads would propel undiagnosed children toward competent professionals. But they repelled and upset a subset of the very population they were meant to assist: people with autism-spectrum disorders.

Autism activists spearheaded a huge protest. The chief organizer was 20-year-old Ari Ne’eman, who has an Asperger’s (autism without speech delay) diagnosis. In a memo to his Autistic Self Advocacy Network, he denounced the campaign as relying on “the oldest and most offensive disability stereotypes to frighten parents.” While people with diagnoses of autism and Asperger’s have difficulty with social interaction, he added, “we are not incapable of it and can succeed and thrive on our own terms when supported, accepted, and included for who we are.” Stereotypes of autism were self-fulfilling, he argued. As he told me later, autistic adults were abandoned to “rot in institutions because of the perception that there is no way they can live in the community.”

Very long and interesting article. Includes multiple perspectives, including a prominent parent advocate who urged the author not to write about the autism self-advocates *at all* (as opposed to making sure that diverse perspectives were represented).

In the interest of full disclosure, I should say upfront that I know several of the people interviewed in the article. I used to share a house with one of the people, in fact. One other person is an activist I talk and email with on a regular basis.

[ June 10, 2008, 03:30 PM: Message edited by: sndrake ]

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ketchupqueen
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Thanks, that was fascinating.

It reminded me a lot of things I've read about conflict within the Deaf community about how they should be referred to and treated, and the Deaf community's conflict with hearing parents of non-hearing children who "want them to be 'normal'."

I'm not sure that's a valid comparison, mind you, I'm just saying that's what the conflict reminded me of.

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sndrake
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ketchupqueen,

thanks - glad you liked the article.

There are some similarities, but also some significant differences. For one thing, there really is a "cure" of sorts for some kinds of deafness. When it comes to autism, well, here's what I wrote in another thread last year:

quote:
Putting aside the issue of the desirability of "cure," I think there's a more important and mostly overlooked issue.

The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or defect.

What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.

I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.

It's not just limited to autism, btw. The criticisms of Christopher Reeve were simplified in the press. Most people are supportive of research that will soften the degree of disability in all kinds of disabilities. But Christopher Reeve wasn't talking about research giving him more sensation and movement - he was talking about it giving him the ability to walk again. Given the realities of muscle atrophy and loss of bone mass (not to mention lots of other barriers) that is and was fantasy.


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Eaquae Legit
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Hey Steve, just a heads-up in case you're interested. The brand-spanking-new Society for the Study of Disability in the Middle Ages is up and running, and we've started our own blog. http://medievaldisabilitystudies.blogspot.com/

And thanks for the article. It's a good read, and I'll pass it along to a colleague who'll be interested. [Smile]

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C3PO the Dragon Slayer
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The problem with autism, especially Asperger's, is that it may be dozens of similar-looking disorders that can have all sorts of causes. I'm willing to write off vaccinations as one of the possible causes, but the thing is, we only know about Asperger's because there are people who show these symptoms. But the variation in symptoms across autistic patients is so great that there is no solid definition or simple test to prove a child is indeed autistic, or just quirky. Nowadays, variation from the norm must have a medical cause, so otherwise normal kids who are different in a few special ways, including social ineptitude, impaired intuition, or the exhibition of obsessions of a higher magnitude than that of most kids, are often screened, and even diagnosed, with some mental disorder.

So with so many different perceptions as to what autism is, "autism rights" is a subjective idealism. To high-functioning autistics, such as "Aspies", curing autism means changing the way they think to conform to societal norms. But in many ways, Asperger syndrome allows the brain to do things that "normal" people struggle with, and so they see it as an assault because they're different. To some parents of "low-functioning" autistics, autism made life difficult, and, in extreme cases of parental phobia, impossible. When parents have kids, they expect to produce someone that is neurotypical, and autism "destroys" that.

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Synesthesia
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I have hardcore got to finish that article beause I can't ABIDE the mainstream attitude towards autism.
It literaly bugs the crap out of me. Especially folks compare a child with autism to a changling child.
It's really dehumanizing. And when people are dehumanized that way it leads to these horrible incedents, and it gets in the way of truly understanding autism so we can help them and help people in society to understand them better.

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Sachiko
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KQ--I thought of the same thing, that is, the rifts in the Deaf community, especially as regards cochlear implants.
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ketchupqueen
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That's exactly what I was thinking of, Sachiko. [Smile]

I know it's not a perfect corellation but a lot of the "tone" seems the same.

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Eaquae Legit
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C3PO, you might also be interested in the blog I linked, as well as http://www.inthemedievalmiddle.com , where discussion about disability and community has been going on the past few days. The other blog in the trio is http://cripples-imbeciles.blogspot.com/
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rivka
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Very interesting article, sndrake. Thanks for sharing it. [Smile]

My favorite line:
quote:
That’s what my kid is like. Needs support, needs attention, and is amazing.
(Also, Ne'eman's last name amuses me greatly.)
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Mrs.M
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Very interesting article. I'm somewhere in the middle myself, like Ms. Grandin.

We've had a lot of trouble getting a diagnosis because Aerin doesn't have a lot of traits that people associate with autism - she's very affectionate and athletic, for example. It's extremely frustrating how much stereotypes affect the entire process.

This article really enforces my decision to never, ever go to any kind of autism parents' group.

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pooka
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I saw the deafness correlary as well, and it is upsetting to me because recently my sister, who's son is virtually deaf, made a statement about it being better for a 5 year old to go live in a dorm at a deaf school rather than live with his parents. Much was said about linguistic deprivation outweighing love, and whether love can be said to exist without a willingness to communicate.

Something that came to me when explaining the family tendency toward autism, OCD and ADD to my daughter who was then 8, is that these disorders very often go along with unusual talents - thus alleviating her of an expectation that she should treat herself as if she has a learning disability. But the talents are on the side, the social disability is still a social disability. And not everyone who has autism has compensatory gifts of analysis.

My maid of honor has tried to get me interested in diagnosis and the benefits of IEPs and classroom accomodations, but when it comes to school, I feel if my children are capable of passing grades in the areas they have interest and are not disrupting the learning of the children around them, I'm not going to push it. Part of it is my husband doesn't want them to bear a label, I rationalize it that I'd rather see those resources go to children who are in greater need.

I do agree with the point of view that a cochlear implant is not really a cure for deafness. It's about the same as having a wooden leg, but the perception that the person is now cured and should perform like their were born with ears places them at a disadvantage. Mostly, I'm for treating deaf people who know ASL as simply being speakers of another language, one I am able and willing to learn.

P.S. I don't think his idea that depression is curable holds up either. It's a lot like the Cochlear implant - people are not really whole, they are just made functional. I don't oppose the use of anti-depressants, I just don't want them presented as something they are not - a bandaid that makes it like the boo boo never happened. You'd think there were no drug treatments for autism, when I know there are.

[ May 29, 2008, 01:30 PM: Message edited by: pooka ]

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sndrake
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Eaquae Legit,

those are great blogs - they appeal to my inner "recovering academic." [Smile]

rivka,

what's amusing about Ari Ne'eman's last name?

Mrs. M,

My feelings are a little more complicated than "being in the middle" and I'll do that in a separate post. I wouldn't totally eliminate the idea of autism parents' groups, but would approach them with extreme caution.

There is one in Peoria - called ANSWERS - that is especially dysfunctional. When one of their leading members was accused of smothering her 4-year-old daughter (she was eventually convicted for this), the members of her group came out and talked about what a wonderful mother she was.

After that initial flood of praise, a darker picture came out. The mother who killed her daughter hadn't been living with her for over a year. Although the child was regarded as loving and making progress by others in the familiy, this mother could only see her as ruined. She was one of those mothers obsessed with believing that her daughter was "stolen" by thimerosol additives in early vaccinations and was obsessed with a cure. In the last months of her daughter's life, she had stopped referring to her by name.

It leads me to believe that - in this particular parents' group - "good mother" is defined as one who is obsessed with a cure.

But not all support groups are like that.

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pooka
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I was a bit puzzled by the discussion of Autism Speaks. They never really said where they were in the spectrum, just that some of the activists said they endorse murder (which is a bit off-putting). My sister (whose child at one point didn't talk at all and is still prone to echolalia) published a book with them. Her child has been very responsive to interventions (in terms of communicating appropriately and looking in the eye -- not aversives) and apparently improved on Risperdal, though they changed to something else when she started to have high cholesterol. The parents are quirky/gifted people, themselves, though.

P.S. I'd define the spectrum of autism response as on the one side, the vaccine people who see a conspiracy in the government's denial. On the other end is activists who say any research into autism will ultimately serve an effort at pre-natal genocide. I hope I'm somewhere in the... er... happy medium. I don't prefer that my children have Aspergers/Autism, but it's something I am happy to live with and try to see the up side.

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rivka
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quote:
Originally posted by sndrake:
what's amusing about Ari Ne'eman's last name?

"Ne'eman" means "believer" or "devout one." [Big Grin]
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Synesthesia
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http://crimsonthought.blogspot.com/2008/05/ok-so-i-am-now-officially-back-on-web.html

This guy had interesting things to say about the article.
I find myself disliking groups like Autism Speaks and DAN! because I feel like they present a somewhat inaccurate view of autism like the one that was in a book I read called The Last Don.
They represent autistic children as being stolen away by autism and having no soul. I haven't read Jenny McCarthy's book, but if I have to read that point of view, I'm no sure if I want to.
It's dehumanizing. When autistic individuals are presented like that, peopl edon't get a clear enough view of them. Autism is extremely interesting from the perspective of people who actually have it and know what living with it is like.
There has to be some sort of balance between viewing it as a death sentence and finding a way to support people who have it and treat them with respect, compassion and understanding.

I also got to say I like the neurodiversity point of view a lot more then some other's I've seen. But the implants for deaf people thing doesn't seem to have a simple solution. It would make things a bit easier in the hearing world, but then one could feel alienated in the deaf world as well. Makes me wonder...

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sndrake
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pooka,

the "Austism Speaks" issue is complicated, so I'll cheat. A lot of the criticism stems from their widely promoted documentary "Autism Every Day." Linking and quoting from others:

Excerpt from Wikipedia entry on "Autism Every Day":

quote:
Criticism
Viewed by some as propaganda, the film aroused a great deal of anger from the autistic rights movement [1] [2] Critics allege that the film is a textbook example of selective framing, choosing the worst possible moments of life with an autistic child. There is no mention of the fact that autistic people have a wide range of behaviors and not all autistic children 'act out' in the way portrayed in the film. Further criticisms have to do with the obvious self pity exhibited by the mothers; and one mother's declaration, in front of her autistic daughter, that she had contemplated murdering her. Although we would be appalled to see a similar movie being made about parents of children with Down's Syndrome or other developmental delays, there has been little outcry over this grim, depressing view of life with a disabled child. On May 13, 2006, only a few days after Autism Every Day was released to the public, Karen McCarron smothered her autistic daughter Katie, leading some to speculate that the film inspired Katie's killing.


From a glowing review of the documentary in WireTap Magazine:

quote:
Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.

***

The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. "I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools." It was only because of her other child, she said, that she didn't do it.

Both autistic and typical families have reacted with outrage and disgust to Singer's statement -- calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer "gutsy and courageous." She was expecting a call from Singer asking that the footage not be used. But that call never came. "You don't say stuff like that -- camera rolling -- unless you are truly ready to play ball with the entire world," Thierry says.

If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. "If this is not your reality, then God bless you," she says.

To reiterate, this film was and is used to raise money by the 500-pound advocacy gorilla known as "Autism Speaks."

Finally, here's a link to the petition, Autism Speaks: Don't Speak for Us petition. More info there. And if you forward through all the signatories, you'll finally get to my name - in the very first page or two of signatories.

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pooka
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Why is that cheating, sndrake?

I think it was a huge mistake for them to put anything about people murdering their children in a film like that. I haven't seen the film. I'm familiar with the article "Welcome to Holland." I think the book my sister worked on was specifically Mormons with Autism, though it may have been a geographic group. I think if you have a religious belief where no one is perfect and everyone will someday be resurrected, your view on solutions and advocacy is automatically going to be different.

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Synesthesia
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Signed it.
I hate that attitude so much!

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sndrake
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Syn,

As most people would guess, I lean heavily in the direction of the neurodiversity crowd. Some of my best working and personal relationships have been with people who are somewhere on the spectrum (asperger's mostly).

To me, though, the real question is balance in representation. Neurodiversity activists and advocates have a lot to offer in the way of understanding how those of us with atypically wired brains fit into the world.

So do parents. So do professionals.

Right now, though, the perspective of the neurodiversity movement can barely be heard over the professional public relations onslaught that mostly portrays autism (and other "conditions") as a curse, plague, kidnapping, etc. etc. etc.

It's gotten worse in the past few years thanks to the emergence of "Autism Speaks." The organization was founded by Bob Wright, former Chairman of NBC Universal. He is still (I believe) Vice Chairman of General Electric.

With Wright at the helm, "Autism Speaks" has been able to dominate the autism advocacy scene (it's why NBC has devoted so much time to it). He's attracted lots of money and media talent to the organization. It's already absorbed several smaller groups.

It's not that "Autism Speaks" doesn't have a right to be heard - but that they drown out every other voice in the room.

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sndrake
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quote:
Why is that cheating, sndrake?

It's not. I was joking. Forgot to put quote marks and a smiley to make myself clear.
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ketchupqueen
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While I agree they probably shouldn't have used that segment in the film, and they shouldn't claim to speak for everyone, I think denying them the right to express sadness and frustration about the situations they live with would not be right, either. I think the same argument can definitely be made against them that is made against the self-advocates: that they don't represent the whole spectrum. But nobody does. Everyone has an individual experience, and that's all they know, and each person's response to their situation is also individual. I think it is beneficial for those of us without a personal stake in the matter to try to embrace and support all experiences. That doesn't mean condoning speaking about killing your child and yourself in front of your child-- but maybe providing appropriate support and therapy for people who feel that way, and acknowledging their feelings.
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sndrake
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ketchupqueen,

first, see my discussion about who actually gets to get heard for the most part.

The big problem with the way the film portrayed the "killing" issue is that they more or less normalized it in the context of being the parent of a kid with autism.

[ May 29, 2008, 05:07 PM: Message edited by: sndrake ]

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Synesthesia
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quote:
Originally posted by sndrake:
Syn,

As most people would guess, I lean heavily in the direction of the neurodiversity crowd. Some of my best working and personal relationships have been with people who are somewhere on the spectrum (asperger's mostly).

To me, though, the real question is balance in representation. Neurodiversity activists and advocates have a lot to offer in the way of understanding how those of us with atypically wired brains fit into the world.

So do parents. So do professionals.

Right now, though, the perspective of the neurodiversity movement can barely be heard over the professional public relations onslaught that mostly portrays autism (and other "conditions") as a curse, plague, kidnapping, etc. etc. etc.

It's gotten worse in the past few years thanks to the emergence of "Autism Speaks." The organization was founded by Bob Wright, former Chairman of NBC Universal. He is still (I believe) Vice Chairman of General Electric.

With Wright at the helm, "Autism Speaks" has been able to dominate the autism advocacy scene (it's why NBC has devoted so much time to it). He's attracted lots of money and media talent to the organization. It's already absorbed several smaller groups.

It's not that "Autism Speaks" doesn't have a right to be heard - but that they drown out every other voice in the room.

A balanced approach sounds good to me, and the best way to help the most people. I never knew that about Autism Speaks. I just dislike them from some stuff I've read from their organization.
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pooka
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quote:
Originally posted by sndrake:
ketchupqueen,

first, see my discussion about who actually gets to get heard for the most part.

The big problem with the way the film portrayed the "killing" issue is that they more or less normalized it in the context of being the parent of a kid with autism.

As I thought about this on the way home, I thought of two points:

1) Murder suicide is not the same as Murder. It's still awful and not something anyone should normalize, it is not an "act of love" as people often say, but it is an act of despair and not evil as I'd deem the many who kill a helpless dependent and go on to defend themselves in court.

2) If the quote were used as an illustration of how parents of autistic people are under extreme stress and need support and possibly legislation to attain therapy (as kq mentioned) it would possible be acceptable. But even then...

We would never tolerate a movie in which a parent talks about considering killing themselves and their child for being overweight or even (as was pointed out) having Downs Syndrome.

I didn't realize Autism Speaks was such a large organization. I thought it was just some people my sister knew on the internet. What are the issues people have with their philosophy?

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ketchupqueen
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quote:
Originally posted by sndrake:
ketchupqueen,

first, see my discussion about who actually gets to get heard for the most part.

The big problem with the way the film portrayed the "killing" issue is that they more or less normalized it in the context of being the parent of a kid with autism.

Yeah, wrote my post while you were posting yours. [Smile] Slow internet today.

I haven't seen the film, and probably won't. And like I said, I don't condone saying things like that (although as a parent of non-autistic children, I have had moments where I seriously thought of harming them, even as I dismissed the thoughts and knew they were wrong, and when exhausted with a newborn had fleeting thoughts of throwing her over a balcony to stop the crying once. So I know what it feels like to be overwhelmed and especially overwhelmed and dealing with depression and being a caretaker of a child.) I do encourage recognizing that some parents feel that way, and offering them support and services to help them cope and deal and treatment if necessary for stress, anxiety, and depression. I'm not saying they took the right approach to the feelings-- but that it's important the feelings have an outlet.

On a the subject of a completely different film about autism, have you seen Autism: the Musical?

It's in my Netflix queue, but I haven't watched it yet. If I like what I see I may look into enrolling my eldest in a dance class that a local studio has for a mixed group of autistic and non-autistic children (all abilities welcomed.)

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sndrake
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ketchupqueen,

There's a really good analysis of why advocates *shouldn't* blame poor services when parents kill kids with disabilities that includes comments similar to yours. It's written by a researcher who is also the parent of a child with multiple disabilities.

Why we shouldn't blame the murders of disabled kids on lousy services by Dick Sobsey

I haven't seem "Autism: The Musical" yet, but I should check to see if it's still available on my HBO "On Demand." I did check out the website and the interviews with parents covered the gamut of experience and attitudes - which, as I've said, is what things probably should look like in a better world. [Smile]

It's pretty much what you've said, too.

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ketchupqueen
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Of course they shouldn't blame lousy services, and I hope you don't think that's what I was saying.

I'm just saying that services should be provided, and that we should try to acknowledge that not everyone has an awful experience, and not everyone has a great experience, and people react differently, and people's experiences will even differ day to day within their own lives. [Smile]

I'm going to read the linked article later-- right now I'm gonna try to get a nap while Ems is at preschool, Bridey is napping, and Maggie's fussiness hasn't started up yet for the evening. [Smile]

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Sachiko
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The idea of not researching the causes of autism in order to prevent prenatal genocide--I'm not sure how that's any different from the usual prenatal genocide of regular everyday unborn babies.

Not trying to troll here; just sadly thinking that disability rights activists would have an uphill climb trying to prevent the abortion of the unborn disabled when we can't even address the aborting of children who are apparently healthy and perfect.

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DDDaysh
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Ketchup - I know where you're coming from. I too don't think you can BLAME the murders of disabled children on lack of services, but I definitely think services can help decrease the number. My step-daughter, that I raised for over a year (and wanted to adopt) was profoundly handicapped from cancer. When my son was born, my (now ex-)husband was working nights, I was teaching during the day and coming home to and infant and a pre-schooler who could not walk or talk and through tantrums frequently.... there were times when I believed we were NEVER going to make it. I was getting MAYBE one or two hours of broken sleep a night for weeks on end... was juggling doctors, and therapy, and a spouse who was distancing himself from the kids (and therefor me) more and more because he just couldn't take it.... People in desperate situations become desperate. They love their children, and don't want to see them hurting, but think they are powerless to stop it, and they do something insane... While lack of services is never the CAUSE of the insanity, good services can help prevent people from becoming so desperate that they act on it. Even more important, the better the services provided, the less overwhelmed the parent(s) or caregivers are, and that frees them from focusing on merely surviving, allowing them to be better parents to their kids and the whole family having more enriching lives.

As far as the article goes... it was interesting that they brought in so many perspectives, but I'm still wary of going with any one thought. I really REALLY hate the quote about wishing you had a different, non-autistic child instead. You can say that about ANY child with ANY disability. Two of my brothers were mentally retarded from Fetal Alcohol Syndrome.... is it horrid for me to wish their biological mother hadn't done this to them? After all, the handicap significantly impacts their personality. But I don't think that's what parents mean when they say it... certainly not when talking about the, er, more profound versions of autism.

It's easy to look at an Aspie and say "That's just who they are". I've been considered for the diagnosis myself on multiple occasions... and for most Aspies I think this is true. With a little assistance, and learned behavior techniques, most of them can become somewhat quirky but capable individuals.... but Autism is a very VERY wide spectrum. Is it really so awful for a mother to see the expressiveness in her sons eyes, and want to be able to hear his thoughts in words... I don't think so. I think that parents (or most of them) who wish their child was "normal" see things in their child they truly love and admire.... but feel like those things are blocked from coming out and being shared or grown because of other elements of the syndrome...

One thing I have never understood is why parents would WANT their children to be Autistic. When I was looking at forums a year or two ago, there were alot of parents who had one or two autistic children and were so disappointed with their "normal" child, or would specifically say they never wanted "normal" children because Autistics were so much better. One mother's signature line read, "Mercury causes Autism? Give me some." Even accepting that many autism spectrum individuals have a "trade off" of abilities, I can't see why any parent would want to start their child off with such a struggle.

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sndrake
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quote:
Of course they shouldn't blame lousy services, and I hope you don't think that's what I was saying.

No, I definitely *don't* think that's what you were saying and I apologize for not writing clearly. That happens when I rush off a reply in the few minutes before I have to go somewhere.

I was reacting to this comment from you:

quote:
And like I said, I don't condone saying things like that (although as a parent of non-autistic children, I have had moments where I seriously thought of harming them, even as I dismissed the thoughts and knew they were wrong, and when exhausted with a newborn had fleeting thoughts of throwing her over a balcony to stop the crying once. So I know what it feels like to be overwhelmed and especially overwhelmed and dealing with depression and being a caretaker of a child.)
The piece by Dick Sobsey discusses this in the context of parenting - both disabled and nondisabled children.

Note - I'm rushing off again to another commitment. It's possible that I have managed to be clear as mud again. If so, let me know and I'll try to rectify the situation when I get back to my computer later today. [Smile]

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Synesthesia
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quote:
Originally posted by sndrake:
ketchupqueen,

There's a really good analysis of why advocates *shouldn't* blame poor services when parents kill kids with disabilities that includes comments similar to yours. It's written by a researcher who is also the parent of a child with multiple disabilities.

Why we shouldn't blame the murders of disabled kids on lousy services by Dick Sobsey

Great article, but whatt I wonder is how can the services be improved, and how can there be a less negative concept when it comes to disabilities? I don' tthink the image most peopl ehave in their head of disability from Jerry Lewis telethons and other sources really helps, but there's a lot of parents who have children who are NOT disabled who have this image of parenting that just makes any sort of stress they feel as a parent a billion times worse.
I feel bad for these parents, but they have so many people sympathetic towards them, it's a bit sickening. i read an article about a woman who was praised by a judge after she poisoned her developmentally disabled child.
It's the children I worry about more because when that better off dead than disabled concept gets throwed around, it's them who suffer the most.

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pooka
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I was confused by a lot of the Sobesy article, but I think he condenses his point well at the end:
quote:
If we are going to be compassionate to people who kill their children, let's be compassionate to all of them. If we are going to be punitive, let's be consistent with that, but let's stop pretending that killing children with disabilities is any different than killing any other child.

As far as murder/suicide goes, I can say I did have compassion for my neighbor who wigged out and shot his children and himself (and they had no disability, it was because he was depressed and his meds were probably levelling.) It was terrible, but I felt for him.

[ May 30, 2008, 11:33 AM: Message edited by: pooka ]

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sndrake
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I apologize for neglecting this thread -- Diane and I are getting ready for a major move and it's been pretty hectic as we scramble to tie up a lot of our loose ends (more on that later).

I'm about to do another "hit and run" post since I'm leaving for a three day gig tomorrow, which brings in some extra income in this time of radical transition.

This morning, Good Morning America on ABC featured a story on the neurodiversity movement. Two friends are interviewed. Ari Ne'eman is the president and founder of the Autistic Self Advocacy Network. Kristina Chew is the mother of a son who has what most people would consider pretty significant (or "severe") autism.

(I know Syn's already seen it, since I saw her post today on Kristina Chew's blog.)

Anyway, check it out:

Controversial New Movement: Autistic and Proud

quote:
Ari Ne'eman and Kristina Chew say they are the faces and voices of autism's future.


They're part of a controversial group hoping to radically change the way others look at autism. Their message: Stop the search for a cure and begin celebrating autistic people for their differences. It's a message that has some parents of autistic children bewildered and angry.

Ne'eman, 20, is the founder of the Autistic Self Advocacy Network, a non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals.

"We believe that the autism spectrum and those on it, are important and necessary parts of the wide diversity present in human genetics," Ne-eman says on the ASAN Web site.

Ne'eman was diagnosed with Asperger's syndrome, a less severe form of autism, as a child.

"I think the others around me knew I was different from as early as I can remember," he told "Good Morning America."

When Ne'eman says that looking for a cure for autism is the wrong approach to take, he understands why some parents are upset -- especially those with very low-functioning, non-communicative autistic children.

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

Unfortunately, that statement from Ari Ne'eman gets largely ignored by a sad-faced Diane Sawyer and a guy from NIMH who portrays rebuts a "straw man" version of Ne'eman's stance.

I'll be back in a few days. Got an early flight tomorrow.

Edit to add: If you use the link, the text story includes a link to today's video story - including the interviews with Ari and Kristina.

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