This is an interesting read, thank you.
I consider it important that a diversity of voices be heard. One need not agree but I think it's important to listen.
(Interesting and, to me, amusing characterization of aspie. Somewhat guilty as charged.)
This is a person I'd really like to ask questions of. What does autism mean to her? How does she know when she's being more or less autistic (i.e lost is autism)? Does she know? Or do people tell her that she is? Does autism disrupt her thought pattern or is it mostly experienced in her body?
I wanted to post on this thread when it was first started, but had used up my allowance.
Now I find that most here have set out my position in far better words than I could!
I am not sure that LFA, HFA or Asperger's syndrome are intrinsically different forms of autism. If autism is a different way of looking at the world than being NT, then, just like the NT majority, there is going to be a wide range of personality types, intelligence and experience - all of which may influence our behaviour in a given situation.
Which autism label we are given can be dependant on the feelings and prejudices of the diagnostician, influenced by the recollections of the autists and/or their family. Witness the debate now happening about whether females on the spectrum should have a whole new set of criteria to meet.
If someone is labelled LFA because of severe communication difficulties, and then is enabled to communicate, was the original dx wrong? After all, deaf people were considered low-functioning once upon a time. Does low functioning actually apply only to those who cannot communicate
yet, or
at all? And how can we tell if the latter group isn't the former?
Having just read the piece about Sue's childhood written by her mother, I am not at all surprised that Sue has a big problem with the world. Her mother admits that nobody had made any attempt to understand her daughter or help her to communicate until she was thirteen. Good grief, that would traumatise anybody.
The whole tone of the piece is geared towards pointing out what a failure Sue was, as a daughter, a sister, a playmate for other children...
And it appears that all the problems with communication were blamed on her autism, and therefore on her, instead of on the failure of everyone around her to find a way of communication that worked for her until she was taught to type.
I would be ashamed if I were her mother. Sue obviously wasn't severely intellectually impaired, just intellectually neglected.
It would be nice if she could find a level of self acceptance instead of pinning her hopes on cure - that's not going to happen for her. Life must have been very hard to her - her self esteem seems low.
Of course her self-esteem seems low - she was brought up by people who, instead of loving her as she is, treated her like a waste of space and effort because of who she isn't (i.e. perfect)
I agree with you Ethel, last thing we need is a "Nineteen Eighty Four" mentality, where it gets to a stage when everyone says no to a cure..without actually knowing why, or what for.
She says "I don't want any more children to live, as I must, in this constant state of war." She gives up. She has lost the battle, defeated. If her wish comes true, the cure is death and none of those children will live anyway.
The divide between LFA and HFA is a myth. Are the paraplegics battling with the one limb amputees? Are visually impaired fighting with the legally blind? Are the signing deaf sparring with the people who use hearing aids?
I wish people would deal with the REAL issues here: prejudice, exclusion, lack of funding for special needs etc. NOT whether women (notice I didn't say people) should have abortions for whatever reason they feel like.
This is the reality -- the first and maybe only CURE that will be made available for autism will be a genetic prenatal test. Any other therapies or treatments that "cure" are ever made available in the future are not likely to be affordable or feasible because the "death cure" is still cheaper and less trouble for society.
Tigger, that's fair cruel. I don't see anything to prove this.
And she said herself the reasons; The constant war she fights just to control herself, jealousy over how easy it is for the normal people to make friends, etc. She's in college.
Sorry, I didn't intend any cruelty 
. Which post of mine were you considering? I will explain and apologise.
Tigger, it was what you said about her parents. I think it's pretty mean to assume that her parents are like that. I meant no offense, but seriously, that was a little surprising for me to read that. Of course, I don't really know if that's what they're like... I'm getting a bit confused now...
Thank you, I shall explain.
The OP had this link: http://edition.cnn.com/CNN/Programs/pres...world.html
Once there, I followed a link next to a photograph of Ms Rubin labelled 'NOTEBOOK: Living with an autistic child' to this page:
http://edition.cnn.com/CNN/Programs/pres...ebook.html
And read what Susan's mother had written. I will give you a quote.
[b]Changing relationships within the family[/b]
By Rita Rubin
Mother of Sue Rubin
.
.
.
.....All infants require a lot of work, but in exchange a parent gets some response. With Sue it was one way. We gave and she took, giving nothing in return.
We knew something was very wrong with her. She fell further and further behind. Her pediatrician finally acknowledged her delay when she was 9 months old, but didn't know the cause. He rejected my diagnosis of autism.
Sue's only method of communication was crying. After she finally started walking at 36 months, she would take my hand and put in on whatever she wanted. Still, she was not responding to us. We were just there to serve her and she didn't distinguish between us as parents and any strangers who might give her what she wanted.
Sue was not a playmate for Gary. They never attended the same school throughout their public school careers. She never interacted with the other children in her weekly play groups.
The next 13 years of Sue's life continued in the same vein. We were caregivers for Sue. We never told Gary to watch her, but he realized as soon as Sue could walk that she had to be continuously monitored. He could never leave toys around without her destroying them. She had no concept of danger so we had a complicated system of locks and no one ever forgot to lock up. Despite horrendous behaviors such as head banging, biting and screaming, we lived a "normal" life: camping, inviting friends to dinner, etc. We included Sue in everything and just lived with her behaviors and frequent illnesses.
An enormous change occurred when Sue began typing at 13. After a few weeks she could answer my questions. Three months later, she actually initiated communication, verbalizing "work on computer" and typing "telephone Gary" when he had gone out with friends. She began to tell us what she wanted to do and with whom, what was bothering her when she was sick and what she thought about all sorts of things. She still needed watching and was still very aggressive and self-abusive, but she became a contributing member of the household......
I am honestly sick of the cure/LFA vs HFA debate. People are constantly misunderstanding what I write or maybe I am not so good at expressing how I feel about it.
From reading the parent's account -- they got bad medical advice. The doctor refused the autism diagnosis. They never got any help for her????? I am not against people getting the help they need when I say I am anti-cure.
She did want to communicate with her parents "she would take my hand and put in on whatever she wanted" and "she didn't distinguish between us as parents and any strangers who might give her what she wanted." makes me wonder if she had face blindness somewhat. I also wonder if her parents knew how to teach her or tried too often. If she taught herself to read and type, that is amazing.
From the front page of this very site:
We know that autism is not a disease, and we oppose any attempts to "cure" someone of an autism spectrum condition, or any attempts to make them 'normal' against their will.
So let's get one thing straight: if anyone tries to "cure" an Aspie against their will I'll be the first one waving my placard to stop it. The key words here are against their will.
But if an individual wants a cure, then I don't see what right some random strangers with whom they share nothing but (possibly) a diagnosis, have to get involved.
And if saying that makes me unpopular in Aspie circles, great. If the Aspie community automatically hates someone for daring to think through these decisions for themselves rather than toeing the party line, I don't want to be part of it anyway.
Good for you. I hate it when people try to make their beliefs fit into the mould of their peers, as is often the case in social activism groups. And isn't that the definition of "conformity" anyway?
As for cure, while I would not want a cure in the real world, I know that if I could have an ideal cure, which is to say, I'd get rid of everything bad and keep everything neutral and good, I'd do it. But for me, this would feel too much like I am trying to "perfect" myself, and tampering with who I am too much.
I would like to cure the headbanging, the tantrums I used to have, the extrasensitivity I have to many of the senses, to be able to do things such as laundry and cooking for myself on a regular basis, every imperfection of speech that causes me to blank out and not be able to say anything. However, for me I must only work harder, and some things will probably never go away.
The reality is, I've gotten used to me the way I am now, and I do not like the idea that someone must meet a certain criteria of skills to be considered to have a life worth living.
This is why it bothers me more to see people advocate for a cure for all than when an individual autie expresses interest. Because I have some understanding of the difficulties that drive one to want to be rid of all the difficulties, all the negative experiences.
In fact, if there weren't a prenatal test and nobody could be given a cure before age 18, with the ensurance that the individual is aware of what the cure is and there were provisions against coercion of an individual to take a cure (the government would certainly try this, to reduce funds spent on services), then I would have no problem with it being available.
So I don't have any big moral or ethical dispute with someone who wants a cure. I look at it as an understandable reaction to the difficulties living with a disability present - both from the society and from the limitations of the disability itself.
And certainly, we should support research into better kinds of education and therapies, ones which might help us rather than try to force-fit us into unnatural modes of living. But I think the first and best step towards guiding the direction of research to these positive ways is to educate people about our perspectives, that being autistic isn't itself such a horrible, terrible thing.
So while some support cure, and these people should not be discounted or excommunicated from the autistic rights activist spheres, I think it is unanimous amongst those who understand acceptance to mean the loving of the autistic person for him/herself, and to give access to needed services and acknowledge the right to exist free of harassment and discrimination, that acceptance is always a good idea.
Well done post, earthmonkey
http://www.aspiesforfreedom.com/showthre...#pid157923
I know for a fact, that seeking a cure is not the only way you can try to help autistic people. What I believe, is that if we find ways that we know for certain could help autistic people, whether or not it can be called a cure for anything, we'll use them.
I quoted this earlier aswell.
I don't think it is wrong to seek something that may help people, but I have a problem with people demonizing what that is so often considered essential to certain people's personility and part of their identity - Which cure-aggressive autism organisations seem to do very well.
I personally don't think that autism is anything to blame for ones issues. That does ofcourse not mean that I think that the issues are their fault. I just don't think it is good to envy people for qualities that you may never have.
Saying all I think about what's been said on this thread will probably take multiple posts. To start with, there may be a larger and more complex issue than pro/anti cure. To me, there's a civil liberties issue. nobody should ever be forced to undergo medical treatment or be cured of a disability against their will, for any reason. not to save the taxpayers money, not because other people are uncomfortable in their presence,never. in a case of a young child who can't understand what's happening or someone who is unconcious, and and a treatment decision can't be put off, someone else would have to decide, and it must be someone who will act ethically and respect the persons wishes, if they had any. I worry(I don't know if anybody else sees it this way) if a cure became available for any condition that is seen as disabling, people would be pressured hard or forced to undergo it even if they objected. I don't just mean autism, I also mean Cerebral Palsy, visual or Hearing Impairment, regrowing an amputated limb, anything. One of my reasons is i feel very strong that some decisions must be left to the individual, even when it's obvious in advance that sometimes people will make a wrong decision.(Gettting married and divorced are also in that catagory).Another is often treating or curing a condition is more complicated than taking a pill and the condition disappears in every person, without side effects, without any issues of adjusting mentally to the change,without problems like part of the brain or body having lost some quaility from disuse, et c.I think it would be very unethical to make someone undergo a cure if it includes more than a very small risk of death, severe side effects, or may leave someone in a condition that they(not someone else) would find worse than before.
To me,there also seem to be issues here with what one person means to say,and what another persons thinks was meant. This seems to happen a lot, with any group of people talking about anything.With Autism. there also seems to be a lot of argueing about who is allowed to speak at all, and what they can say, and is someone speaking only for themselves or claiming to speak for others who don't agree.this seems to me to be more common with Autism than with many things.And something that goes on constantly which i really object to,is the claim that "you have it better than someone else, so you're evil for saying you have any problems" or "you're denying that my life, my suffering, et c. are real , or should be addressed, by saying what your life et c. are what they are and sticking to your story/speaking at all, even if you 're speaking only for yourself."
I went a little nuts. End of sermon. Probably nobody can stand to read the whole thing.
Just read it all.
Pretty much agree.