Sunday, January 10, 2010

Autism Cure? It's About Functioning Not Conformity

One of the blog posts on this site received a number of visits from the Mother of Shrek Site, where Casdok, the author, and mother of a non verbal autistic young man articulated her views on autism acceptance in the context of what she described as a hypothetical autism cure.

In the course of that commentary Caskok asked what is meant by curing autism but she asked the question using the language of the Neurodiversity ideology to which she subscribes, which views autism not as a medical disorder but simply as a "difference". I posted a comment on that site although I don't know, as I  post this comment, whether it will pass moderation so I have reproduced it below in italics following the question asked by the author which I have also posted and  highlighted in blue.

The wording of the question posed by the site's author obviously provides its own answer. The concept of cure as providing the person cured with the ability to understand the world, to communicate better in the world, to function and even function independently in the world is not part of the question as framed by the Neurodiversity embracing Casdok.

Cure is not defined by Casdok in the medical sense of curing the disorder in question, of helping an autistic child or adult overcome the serious cognitive, behavioral and communication deficits that restrict the lives of so many with autistic disorder.  Instead Casdok, consistent with Neurodiversity ideology, asks the question from the perspective of  a social model of disability, as conformity to societal norms:

"""" So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?! Why can’t society accept everyone is different?"

You have just provided your definition of cure by rhetorical questions framed in the language of those who do not view autism disorders as disorders.

I don't know why you obtained an autism disorder diagnosis for your child. We sought medical attention for our son without knowing anything about autism at that time. We sought attention because he wasn't developing any communication or other functioning skills anywhere near the level of his older brother or any other child we had known.

Cure? Cure would mean providing our son with the same, or similar, ability to understand, function in, even participate in the world that you and I take for granted. Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm? Do none of you ever read of the other autistic persons who are lost in traffic or wander away as did Keith Kennedy to be lost in the woods for a week? Are none of you aware of issues of serious, even deadly self injury that affect the severely autistic?

I have been involved with autism advocacy in our home jurisdiction for a decade now. I have visited institutions where severely autistic persons live dependent on the care of others. I have helped some persons with Aspergers in the legal system. I have advocated with other parents, successfully, for pre-school government funded autism interventions and for accommodation of autistic students in our neighborhood schools.

Of course I want my son's disability to be accommodated and I have used  all my abilities to ensure that happens for him and others where I live. But he, and many others with Autistic Disorder, will live their lives within a facility dependent on others with limited understanding of the world.

All cures are hypothetical, until sufficient research is done to find one.

If I could snap my fingers and cure my son, resulting in him having the ability to understand the world more fully, to communicate more fully, to function and survive independently would I do that?

You're darn right I would."



I am not sure how a mother of a non verbal autistic adult comes to subscribe to the social model of disability,  I wish her son well but I hope, for the many parents who continue to try and help their autistic children live the fullest, most rewarding lives possible, and especially for the children themselves, that the research to find cures for autism disorders continues.  If the day that cures, or even significantly beneficial treatments, are found that improve the lives of autistic children and adults then real choices can be made, even if  some would choose not to provide their autistic loved ones with the benefits of such treatments and cures.

Curing autism is not about conformity. It is about giving people disabled by  autism disorders the ability to function more fully and independently in the real world. It is about giving them the same opportunities to experience life that the rest of us, the alleged Neurotypicals, enjoy.

For this parent curing autism is about helping our autistic children enjoy life to the fullest. 




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40 comments:

Marius Filip said...

I say to all those who view a cure from autism in social terms to come and live for several weeks/months/years in my home country where services are at a much lower lever than in the Western world.

Or, better yet, to go to live in some really poor country of the world. For instance Ethiopia or the Central African Republic or Afghanistan - where there are NO facilities whatsoever, not even at the level of Romania - and only THEN go out and look at autism as the syndrome of intolerance from society.

It is easy to fight for "diversity" when you are backed by things like a strong economy, a long tradition of democratic freedom and a public infrastructure that works pretty darn well most of the time.

It is easy to fight for "diversity" when you know that even if your child does not "conform" there will be some sort of public service that will take care of him/her (more or less).

But let's take all these out for a moment and see what remains of this "fight for diversity".

Stephanie Lynn Keil said...

I've also thought about what Marius has written: autism happens throughout the world and how will those in countries much poorer than the US and Canada, such as Ethiopia, receive treatment?

I live in, supposedly, the best country in the world and I am unable to get any real help. I can't imagine what it must be like in a third world country where there are very little services available.

I often hear the argument that if they find a cure for autism it won't be for another 20, 30, 40 or more years and that it it beneficial to fight for acceptance now rather than to wait for a cure to be found.

In 40 or more years the economies of most of the poorest countries probably aren't going to be much better and if a cure is found you know they would rather have that than build facilities and provide services, which costs precious money and resources. Being able to cure all those with autism is much more cost efficient than the social model of disability.

A poor economy just can't afford "acceptance." America can barely afford "acceptance."

farmwifetwo said...

Exactly... absolutely perfect. I posted in there too somewhere.

I did not perform a brain transplant on the elder. I have not taught him any social or behaviour skills that any other parent with any other child (I hope, but some days I wonder) is teaching to their child. He's been EDUCATED. And now he's INDEPENDANT. We were told when he was 2.5yrs old to write him off by the Dev Ped... and 8yrs later he'll be fine.

That's what we want for the younger. We don't give a dang if he flaps, spins, echo's... he needs to be able to speak, have his voice heard, to learn, to be about to work, live in his own home, have friends.... He too is doing amazing... but I doubt will ever achieve these goals 100%. But we'll keep working at it.

Wanting an independant child is not hating the one you have. IMO wanting to keep them dependant is selfish and cruel.

Penny said...

Big a-ha moment for me. They're hearing the word cure as "conform". *shaking my head* Nope, that's not what we parents mean at all.

Thanks for your blog, Harold.

Stranded said...

I completely agree with this. Ignoring disability by appealing to your "better nature" by calling it a difference and a case for social acceptance, is possibly the worst crimes against individuals with autism.

amandaautismx2 said...

Wanting to let you know that I have changed my website address. It is now at autismandtheworldaroundme.blogspot.com Please continue to visit me here. Thank you!

Wade Rankin said...

Very well said! I've become so reticent to use the word "cure," because like so many other words (indeed, even the word "autism"), there is no agreement on the definition. From my perspective, "cure" is simply a process, not and end, seeking to alleviate or ease disabling aspects of physical conditions that are (depending on one's views) either underlying conditions or, at the least, comorbidities.

Penny said...

Still pondering the disdain or fear of conformity, which doesn't much exist where I live, especially if you compare us to, say, CHINA.

http://www.ageofautism.com/2010/01/autism-and-normal-in-china-.html

Anonymous said...

"cure" is simply a process, not and end, seeking to alleviate or ease disabling aspects of physical conditions that are (depending on one's views) either underlying conditions or, at the least, comorbidities."

Many of the "Neurodiverse" also agree with this. The ones that don't are just irrational and should be ignored. I know that those parents with LFA children who support Neurodiversity could make their children HFA they would.

It's easy to say you don't want to cure your LFA child because a cure isn't available, but if they could make their child HFA they would.

Harold and others,

If everyone with autism had HFA/AS, if we found a way to "cure" the LFA so that they could be high-functioning would you be more inclined to agree with "Neurodiversity?" Many ND activists support this goal although it may not seem like it from the looks of it.

I do not agree with Casdok's opinion: I definitely think her son and those like him need a "cure" to become high-functioning. This is why I support all research into finding causes and "cures (effective treatments)" for autism.

Claire said...

@ Anonymous "If everyone with autism had HFA/AS, if we found a way to "cure" the LFA so that they could be high-functioning would you be more inclined to agree with "Neurodiversity?""

That has to be one of the most unusual statements that I have ever read and underscores the very reason why it is clear that proponents of neurodiversity really don't understand the point in any way shape or form.

Michele said...

It is certainly possible to love and accept your child while working tirelessly to teach them and help them learn! I've worked with children and adults with autism for over 25 years (ABA) and haven't yet met a parent or educator who doesn't love and care for the individual while striving to help them learn and become as independent as possible.

Anonymous said...

Claire,

If there was appropriate treatment available so that your child could be high-functioning would you understand "Neurodiversity's" viewpoint a little better? In the future it may be possible that severely disabled people will be high-functioning. I know the option isn't available now and I know many of you suffer because of this. But it isn't fair to be angry at people who support "Neurodiversity" because I don't believe any of them want your child to suffer, either.

I understand that there are people who are severely disabled and I want them to be be able to function like all of you. But I also don't want autism or disability in general to be completely eliminated.

I support all research so that the severely disabled can function and be relieved of their suffering. But I don't support eliminating autism and disability completely.

I hope that makes sense.

Autism Reality NB said...

Anonymous 10:10

You stated, incorrectly, that:

"it isn't fair to be angry at people who support "Neurodiversity" because I don't believe any of them want your child to suffer, either."

Putting aside the issue of whether expressing opposition to a position that affects a person's child negatively is "anger" or not your statement is incorrect.

Ari Ne'eman and many other Neurodiversity ideologues routinely state that "WE" referring to all persons with Autism Spectrum Disorder do not want to be cured. He opposes the activities of organizations such as Autism Speaks that raise funds for autism research that might result in cures.

Mr. Ne'eman, and you, may not view opposition to research aimed at treatment and cure as not wanting children with severe autism to suffer but that is in fact the result when you oppose autism cure research in principle and in action.

farmwifetwo said...

It's like Kevin and Estee and the rest saying they don't want to cure their kids and that therapy isn't a cure. LB/RB's latest post.

I replied and am waiting for him to post it... told him not to be a hypocrite.

Therapy, any attempt at improving outcomes is working towards independance and therefore "cure". Brains are elastic not rigid so any "therapy" changes the autism, changes speech, changes learning, changes socialization and behaviour. If they truly believed autism was "ok" they'd never attempt any forms of therapy with their children... but they do.

In the meantime they claim cure is not about independance, but about magic pills and brain transplants b/c you know... anyone who isn't autistic must be exactly the same as everyone else... HUH???

Suzanne said...

Where do you get the idea that "Casdok" holds her son back from achieving a higher level of functioning? Because she wouldn't buy a hypothetical magic pill? Accepting my sons' disabilities doesn't mean i don't want them to have their best potential lives. It just means i'm not scrambling after every quackery that claims it will "fix" them. I hope to raise them to value themselves, not view themselves as broken. If you are thinking "but they are", then that is a societal barrier YOU ascribe to.

Claire said...

"I understand that there are people who are severely disabled and I want them to be be able to function like all of you. But I also don't want autism or disability in general to be completely eliminated."

Thank you for your response. Of course, it is silly to imagine that disability would be completely eliminated. I don not understand, however, why it is in any way "wonderful" to have a disability of any sort. Disability exists and must be accommodated in whatever ways medical and social that will bring about as good a quality of life as is possible for the individuals. This is not what neurodiversity focuses on.

I can tell you that, in general, what neurodiversity is doing in the autism area is falling into a most interesting trap. There are certain individuals who claim to have Aspergers...at the same time claim all sorts of super-intelligent qualities. *This is what they focus on and this is the hallmark of neurodiversity proponents who have the media's attention.* Even Temple Grandin, who possibly is the most balanced individual in this regard, makes very specific allusions to progress in society as being related to individuals with Aspergers. She made a remark about the guy who invented the spear was "one of us". It is common for the most outspoken in the neurodiversity crowd to "diagnose" past geniuses with Aspergers. I can tell you right now that, had my father been a bit more famous, he would have been post-diagnosed with Aspergers. He was highly intelligent, an inventor, could count cards, play the stock market, could fix anything on the fly, multiply four digit numerals in his head, had few enviable social skills, did not "get" most jokes, had little perceived emotional connection to his family and was clean and presentable only because my mother kept him that way. He did not have Aspergers...he had brains that he used, an education, supreme force of will, high energy and he didn't give a rat's ass what other people thought of him.

Neurodiversity's biggest focus is in desperately trying to be the brains of society and hence valuable. They value cognition above all else and so find those *similarly diagnosed with autism and cognitively disabled* to be a threat to their perceived intellectual superiority. They want society to accept them "as they are" but have had to pander to society's preference for people with high intelligence in order to gain that acceptance.

In the end, the public face of neurodiversity is NOT about disability, it is about intellect...very specifically high IQ. This position is no better than any other group that chooses to ignore the realities of disability.

Suzanne said...

Therapy isn't (effort towards) a cure, farmwife. Helping one's children learn is not a cure for childhood. It is called parenting. The goals of therapies are probably different between those who think like Harold, vs. those who think like me. My non-verbal child does not have any written goals regarding "talking", even though he has had speech therapy for 6 years. If he never speaks a word, it doesn't mean he doesn't communicate.

Anonymous said...

Harold,

I don't understand. "WE" all have a same goal in common: to alleviate the suffering of the severely disabled. It is simply that our routes to get there are different and we have different opinions about autism.

"Neurodiversity" doesn't oppose research to help the severely disabled: they only oppose research that would eliminate autism or autistic people entirely (e.g. abortions.)

"Neurodiversity" also doesn't oppose treatment for autism or other disorders. What they oppose is, as farmwifetwo says, a "brain transplant," abortions, eliminating autistic peoples.

To say that "Neurodiversity" opposes treatment for the severely disabled and that they don't want them to be high-functioning is incorrect.

While a few, like Casdok, may "blow roses out of her ass" I, like stated above, definitely believe that her son should be high-functioning. But this is not a "cure." If her son was high-functioning he would still have an ASD.

Farmwifetwo: since therapy and treatment does not truly alter their brain wiring it is not a "cure." Therapy and treatments help them function better, of course, and "Neurodiversity" supports this. Your son still has an ASD whether he is high-functioning and will be completely capable of independence as an adult or not.

Autism Reality NB said...

Suzanne

Casdok's post was not about existing "quack" cures. It was about, and I use her words, hypothetical, or future possible but not presently existing cures.

Her comment was based on asking what would you do if a cure DOES become available?

She has said she would not want a cure. If you do not want a cure for your child's autism disorder, should one become available, then you do not want your child to develop to the fullest extent possible.

Suzanne said...

If Autism Cure is not about conformity, then why create the goal of (losing the diagnosis through) being indistinguishable from one's peers?
None of you here are after that? Penny?

Autism Reality NB said...

Suzanne 2

You assumed that "The goals of therapies are probably different between those who think like Harold"

I don't see any difference. I have advocated for 10 years, with other parents, with some success for government funded early intervention therapies and in the school setting.

If a more extensive cure becomes available then I would want that for my son. Calling it therapy or cure if it helps an autistic child overcome his or her autism based deficits and live a fuller more independent life then that is a good thing for the child even if some High Functioning autistic strangers don't like it.

If the research is not done to find a cure, however, the cure will remain hypothetical.

Autism Reality NB said...

Suzanne 3

You said:

"If Autism Cure is not about conformity, then why create the goal of (losing the diagnosis through) being indistinguishable from one's peers?"

The reference to "indistinguishable from one's peers" is a reference to the functioning level of the autistic child. If the child is indistinguishable from one's peers by the age of 6 then the child would have all functional skills appropriate for a child that age.

It is used to avoid saying that the child is actually cured even though it may appear to be the case since there are no measurable differences between that child and his/her peers.

Suzanne said...

Harold
you quote me thusly
You assumed that "The goals of therapies are probably different between those who think like Harold"

but what i said is
The goals of therapies are probably different between those who think like Harold, vs. those who think like me.

I stand by my statement. You desire different outcomes for you child than I do. For example, you look for him to understand and participate in the world the way you do.

Autism Reality NB said...

Suzanne 4

Yes I did omit some of your comment but that does not affect what I said. I have in fact provided therapy for my son and advocated for government funded therapy for other autistic children.

I also advocate for research to find more evidence based treatments and hopefully cures. The goal of therapy, treatment or cure is always to help the persons affected improve their abilities to function in the real world.

You have decided that for your child existing therapy is sufficient but treatment/cure for reasons I don't understand are not.

I do not try to tell you to advocate for treatment and cure oriented research for your child or that you should not have your child cured should a cure become available.

It is you, and other parents, who embrace the Neurodiversity ideology, who feel free to tell other parents that we should not seek to cure, or encourage research to find cures, for the autism disorders that restrict our children's lives.

Anonymous said...

Claire,

"In the end, the public face of neurodiversity is NOT about disability, it is about intellect...very specifically high IQ. This position is no better than any other group that chooses to ignore the realities of disability."

I don't embrace this aspect of Neurodiversity in any way and this also angers me. Labeling past geniuses with Asperger's does nothing but give those who are already geniuses a way to say "look who else had Asperger's!"

It is rather unfortunate that this is where "Neurodiversity" may have started but I can guarantee you that many ND activists are very interested in supporting your average autistic Joe who needs support to survive.

What is wrong with having a disability if one does not suffer? This is what angers me: why is it wrong, in your eyes and that of many others, to be disabled?

Autism Reality NB said...

Anonymous 4:20 pm asked:

""What is wrong with having a disability if one does not suffer? This is what angers me: why is it wrong, in your eyes and that of many others, to be disabled?""

Many persons with Autistic Disorder do suffer, some greatly, from their disability. Self injury, head and even brain injury, self starvation and failure to comprehend the world and the dangers resulting in death by drowning in neighborhood swimming pools, or freezing to death by exposure, or being struck by automobile traffic.

The Canadian Psychological Association 2006 said that 80% of persons with Autistic Disorder are intellectually disabled. This is consistent with the December 2009 report of the CDC which said that on average 41% of ALL persons with ASD's suffer from cognitive impairment. (That includes all the persons with Aspergers Disorder who by diagnostic definition are of average or above average IQ).

There are many persons with Autistic Disorder living in institutional care. I have visited two such institutions here in NB, Canada. If my son could raise his functioning level to the point he could live safely in a more open environment I would certainly want that for him.

Why would YOU oppose my efforts to find a cure for my son and improve his life realities, or any other parent seeking to help their autistic child through treatment and cure?

farmwifetwo said...

How do you know that people with disabilities do not suffer?? "Oh, just hand him a little more support??" What kind?? Where?? In a group home, respite so his Mother has someone else to wipe his backside while she goes to the grocery store??

Why is it "OK" to live without friends, lovers, independance, the ability to make your own choices, etc etc...

Why is it "ok"???

I don't hate my child. I don't ever blame him for the autism. I am very realistic in his long term outcomes and have accepted that which may be... But that doesn't mean he deserves that outcome. That doesn't mean he doesn't deserve more. That does mean he doesn't deserve the freedom, the independance of those on the upper end of the spectrum that say "Well, just hand him more supports"... He doesn't deserve your abuse... For to demand that he be severely disabled and stay that way forever to protect your message... is abuse.

Anonymous said...

"Why would YOU oppose my efforts to find a cure for my son and improve his life realities, or any other parent seeking to help their autistic child through treatment and cure?"

I don't oppose these efforts. I oppose your efforts to eliminate autistic people entirely. I also oppose your efforts that state that ND activists are the ones responsible for stopping your efforts when in reality many (most) of them support the same goal. Their protests against Autism Speaks are to stop the possible elimination (abortion, etc.) of autistic people, to stop the corruption among Autism Speaks and to get their research money directed to a more useful place (supports and more research to help those with LFA), not to stop research to find a way for the LFA to be high-functioning.

Do you still not realize that I also want your son and others with LFA to be high-functioning like the others?

I'm not stopping you from doing this. In fact, I encourage it because I know the "reality" that you continually speak of.

Your efforts for those with autism are very helpful in the present because, as you continually remind us, there isn't much out there for adults with LFA. No one is preventing you from doing this.

"Neurodiversity" has a more long term goal of eliminating LFA so that they can all be high-functioning and helping society to better accept and accommodate their disabilities.

I know this isn't a reality yet, but it very well could be. Your "cure" isn't a reality yet, either. But we both have the same goal here.

Anonymous said...

Farmwifetwo,

"He doesn't deserve your abuse... For to demand that he be severely disabled and stay that way forever to protect your message... is abuse."

No one in "Neurodiversity" is saying this. I want your son to be high-functioning, too! I am not "demanding" that he stay severely disabled forever although he may be severely disabled for the rest of his lifetime since we currently do not have the information for your son to be high-functioning.

No one in "Neurodiversity" wants anyone to be severely disabled. To say that "Neurodiversity" supports this is incorrect.

Autism Reality NB said...

Anonymous 5:00

If you would be so kind as to please answer the following 2 questions:

1) Why is it an ND strangers place to tell another parent how far they should go in helping their own child?

2) Why is it OK to help a low functioning autistic child to become high functioning but not to remove the autism disorder completely and render them fully capable of functioning in the real world without any impairment ... if that becomes possible through a cure?

I would appreciate your answers to these questions.

farmwifetwo said...

If I only wanted high functioning I would have given up on my eldest son by the age of 5.

Instead he's being taught, taught and taught and... BTW... never been told he has a dx, never been told he has an IEP. Never even asks why there's an EA (TA) that helps him, why OT is there (claustrophobia, the fusion - computer for his desk).

A year ago my Mother and I were discussing the younger and the elder (10 now) told me "I am not autistic R is". I told him he wasn't.

Nor will he ever be able to use it as an excuse... IRL - outside of school - you can't tell he has autism. Autism may be the reason behind his black and white views of the world. The hyperlexia, the language issues, the fine motor issues. None of these are ever going to hold him back from being the person he wishes to be....

His brother, Harold's son.. deserve the same...

Roger Kulp said...

Stranded said...
I completely agree with this. Ignoring disability by appealing to your "better nature" by calling it a difference and a case for social acceptance, is possibly the worst crimes against individuals with autism.


Agreed,but don't forget neurodiversity stole all of this anti-cure/"difference" garbage directly from the "deaf culture" movement.Go read their drivel sometime.

Anonymous said...
If everyone with autism had HFA/AS, if we found a way to "cure" the LFA so that they could be high-functioning would you be more inclined to agree with "Neurodiversity?" Many ND activists support this goal although it may not seem like it from the looks of it.


From what I have seen in talking with parents of such children who have used biomedical treatments and had success,their children are still intellectually disabled,but are no longer autistic.

Still that is an improvement.

Roger Kulp said...

Harold,about what you say at 5:25,it goes back to something I have always said.Most neurodiversity types are only able to see autism through the the prism of mild Asperger's,so they don't see it as a big deal.For all their talk about "diversity",they are a very narrow minded bunch.

Tony Tamer said...

I would consider my son cured if he could function at a level similar to that of Amanda Baggs, Michelle Dawson, Ari Ne'eman or Alex Plank. I would be estatic if he had the theory of mind to deceive the public so successfully. I would be estatic if he had the social and communication skills to sell services that do nothing but harm to society. I would, of course, make sure his morality grows with his functional level. I would rather let him remain low-functioning than to see him become an opportunitistic parasite that feeds on disabled children.

Barry Hudson said...

Hi Harold,

Whenever there is a blog post about "cure" it sure gets the most responses (comments). What many fail to understand is that cure, conformity, and functional level are all mutually exclusive - a cure does not mean conformity and though cure may lead to functional level if one is cured "functional level" is not relevant because the condition does not exist.

I repeat my past comment about the starvation death of Tiffany Pinckney (here in Mississauga, Ontario) – a severely challenged 23 year old ASD woman who was locked in a basement (by her adoptive sister, her caretaker after her mother passed away) and starved to death. When found by police she was beyond emaciated (actually skeletal - having died earlier in the day no one in the house thought it was worth while calling an ambulance when she died since all were busy either watching TV or attending a friends birthday party). The fetid basement was beyond appalling and for the time of her starvation (she was systematically starved over at least a year) she was forced to sleep on a deflated rubber mat, use the washroom where she slept, and neighbours did not even know she existed. The judge over the case convened a review of the case after the verdict with social agencies here since in the judges words “it is beyond the realm of any form of thought that this could occur”. Word on the street is that conditions were so bad some of the responding officers still attend counselling (four years later).

If anyone on this planet can say a cure (or means to elevate abilities) is not worthwhile and “detracting from ones self” when the above occurs such a mentality is beyond my ability to understand or argue. See - http://www.mississauga.com/news/article/9504--woman-needed-constant-care-trial-told

María Luján said...

Hi
Main aspects - and many others but related-about all this situation concern me very much
a- What is really useful- and safe - in the daily life struggles and QoL of autistic people?- in medical, emotional and social well being and
b-What is the match between what I think is useful, what my son finds useful and his real needs in all levels- medical, emotional social? and finally
c- what group helped/ help me most to explore the answers to a) and b)?
d-How much a these interpretations are related to the truth?
I will explain. A child is diagnosed. Doing certain approaches. Improving at the point of not having the symptomatology.
For me at this point there are interpretations (recovery?, taking into account aspects not touching the core of ASD?, curing?, whatever) but for me what is important is QoL.

farmwifetwo said...

Tony... well said... and I agree 100%

Barry, I remember that in the news and think of all those parents.. my book is upstairs.. the anthropologist who wrote the book that ND's love... even said it's his "normal" daughter's role to look after her autistic sister. It's not just family that can do that, but paid care workers too... Do you think her parents ever dreamed her sibling would kill her like that??

Who do you trust with the severely disabled?? Even in public nursing homes, where you think your parents should be safe there are documented cases of abuse.

So, I should want my youngest to run the risk of being abused... WHY?? Sooner or later... even 50yrs from now, if I can't care for him.. he has to go into care unless we get a miracle.

That's not right... and it's not "OK".

Suzanne said...

"Yes I did omit some of your comment but that does not affect what I said."
Certainly, there's no need to quote me accurately, if you are not addressing my statement. Since you are not responding to what I said, why quote me at all?

Barry Hudson said...

farmwife2 - I am sure that Tiffany Pinckney's mother did not expect her sister to be the monster she is and will always be.

I made no comments about "who is best to care" and I am not sure how this is inferred from what I wrote (since it is not mentioned). You are going off on a tangent a bit.

I noted the case of Tiffany as one that exemplifies the value of a "cure" however defined - if a cure existed and Tiffany received same the loss of here life would likely not have occurred (this assumes of course that the state of cure would ensure she was not needing any care or contact with her monster sister – she was murdered for money and more likely than not if her sister could have gained cash from her murder she would likely have done so ASD or not – I read the court transcript and the depth of her sisters monstrosity is beyond my ability to comprehend, the defence tried to assert as reasonable doubt that she could have dies from AIDS but since the evidence showed she never seen the light of day or had contact with anyone for years such was not a basis for reasonable doubt). One loss of life under such utter horrific circumstances exceeds being acceptable. Tiffany died specifically because she had autism and no one cared, the common law husband creature stood by and watched and did nothing full well knowing she was dying. That our courts did not convict him is another crime (though I know they had to give him a break so he would roll on the sister to get her convicted – a deal with the devil we see too many times).

Back to your tangential question – who is best to care? I honestly do not know. I would hope family. This haunts me every waking moment and when I think of this for my son I experience a pain I honestly did not know existed until I had my own children (we have two – one ASD, one typical). I know the care of the state is many times beyond appalling (I have been to such places). Coming back to my point, if there was a cure Tiffany would not have died or be abused by private or public care since she would not have needed such.

There are more predators than protectors in our society, if this were not the case we would not need a constabulary. Therefore, a cure, is worthwhile and any argument against such is, to me, under any basis (conformity or not) utterly incomprehensible since cases like Tiffany should not occur no matter the source of the crime (family, stranger, public agents, private agents).

babs m said...

I'm torn as well. With two children on the spectrum, I see that my Aspie is rendered unhappy every day by his condition, even though he's relatively functional. His social skills even after 10 years of therapy are horrid, he has no friends, and no motivation to care for himself, i.e., scrub his face to avoid his teenaged pimple outbreak. My HFA child is happy, confident, loves people, has friends and a sense of humor, even though she's emotionally and speech delayed a couple of years, still keeping up with her fifth grade classmates. If she were "cured", she wouldn't be herself, and that would be sad. If my Aspie could be like other young people, I would be so much more pleased. I think he would, too.