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post #41 of 276
I agree with meowee. And now this confusion over "autistic like" and "true autism." Is autistic like as worthy of celebration as true autism? Are the scenarios the same? IS there a neurotypical person trapped in an "autistic like" person? I have NO idea. But it does complicate the issue in my mind.

My kids have severe food allergies. So do many, many other kids today. It *is* part of an "epidemic." Does is mean my kids are diseased and damaged? No. It doesn't define who they are in a negative way. It just is what it is for us. BUT, if there's a way that I could change their gut flora, or immune system or whatever to make it so they could eat more easily in a culture that offers the sorts of foods that they are reactive to....I surely would.

Other allergic people might be delighted to have the allergies they have. Perhaps it's made them better cooks, or stick to a healthier and whole-foods diet. Whatever the case. I wish I felt that way, but I don't.

But like autism or allergies or deafness or anything.....you're going to have some who struggle and wish for "the norm" and you're going to have some who make the best of it and some who wouldn't change their situation for the world.

I think it's great that there are folks who think their autism or aspergers is a gift and a boon.

But I don't think the majority of folks feel that way about it. Not that that makes it right. But I don't think most parents of kids who've been diagnosed with autism or deafness or food allergies are pumping their fists into the air and celebrating at the news.
post #42 of 276
Quote:
Originally Posted by Smokering View Post
Interesting topic, and one I've thought a lot about. I'm a self-defined Aspie, never officially diagnosed--I've considered pursuing a 'vanity diagnosis' just for interest's sake, but I frankly can't be bothered. DH is likewise self-diagnosed... well, me-diagnosed!--Aspergic, as are most of the members of my family, with the exception of one 'full-blown' autistic sister. Even glancing back through my family's history, I suspect many of my ancestors were Aspergic or autistic. My mother certainly has suspicions about her late father. So I've sort of grown up around neurodiversity, and as a result have had an extremely cushy ride as an Aspie. My family has always understood my quirks, DH even more so; I homeschooled throughout high school, thus avoiding a lot of the trauma I might have encountered in a predominantly social, neurotypical environment (DH wasn't so lucky); and I can certainly 'pass' for normal, or at least for geeky, well enough to do whatever I've liked--Uni, having a job, making friends (more or less), and so on.

So I certainly have no cause for complaint, or any personal reason to consider Asperger's a burden or a curse. It's the way I am; it has many undoubted benefits; and if someone were to offer me a 'cure', ie. a radical rewiring of my brain, demolition of my personality and sense of identity, and disappearance of many of my talents, I'd be absolutely aghast.

On the other hand, I have worked as an ABA (applied behavioral analysis) therapist with an autistic boy. This is therapy, not 'cure', although some people involved in ABA use 'cure' terminology, not necessarily as a result of ideology, but simply because many autistic children who do ABA therapy ending up losing their clinical diagnoses (for better or worse). I don't believe that this equates to those children 'no longer being autistic'--I don't think that's possible, or the purpose of ABA--but I can understand why it might come across that way to some. And because of this, I can understand why some might consider I had 'betrayed the cause' of neurodiversity by participating, as a 'high-functioning' Aspie, in ABA.

In that particular instance, I don't think I did. I watched the boy I worked with learn, flourish and grow; become happier and more content as he learned to manage desires, behaviors and impulses which were not 'autism' or 'autistic', simply things which had different causes and functions. For example, he didn't panic when he heard a hot air balloon fly overhead 'because he was autistic'--what a copout!--he panicked because the sound overwhelmed him. We worked on it (we had to, hot air balloons were holding a festival in our city!). He got over it. That didn't make him 'less autistic'. Does that make sense?

Anyway. My point, and I did have one! I am Aspergic; that's a fairly fundamental part of who I am, just as being female is a fairly fundamental part of who I am. But just to shake things up, I am also a Christian--and my faith is even more fundamental to who I am--more so, I would say, than either my neurological status or even my gender. So I view neurodiversity through the lens of Christianity, and this brings an interesting perspective to the discussion which I rarely hear.

Most neurodiversity arguments are based around rights--the 'who are you to say' arguments which point out that it is unfair for one segment of society to impose its particular social expectations on another, and so on. Rarely do I hear the other side of the coin acknowledged, that of responsibility--from a Christian perspective, that of sin. My view is this: every type of neurology, from neurotypicality to autism, comes with its assets and weaknesses, its tendencies to good and to evil. To go with the stereotypes for a moment, a neurotypical person may have a greater capacity for empathy, while an autistic person may have a greater capacity for logical thought. What seems to get lost in the rhetoric of being true to oneself is that very often, one's tendencies, morally speaking, suck. I am Aspergic; I frequently have difficulty being polite to people, especially in social situations which involve much small talk. I could blame the one on the other. But to say 'I'm Aspergic, therefore I don't have to be polite' is simply selfish. I may have to work harder on being polite than the average person; it may be a chore for me; heck, it may, at some point in the future, require therapy or interventions. Tough cookies. My first duty is as a Christian to holiness, not as an Aspie to self.

Now that doesn't mean I have some sacred obligation to attend every social function I can lay my hands on. And of course, it goes both ways. I have often observed in the neurotypical a tendency towards emotionalism and irrationality during argumentation. I see no reason why 'Oh well, I don't have a logical mind' is any excuse for intellectual sloppiness on their part either. (Of course, many might disagree with me in labelling intellectual sloppiness a sin, but that's another discussion!).

In other words, I am for neurodiversity; but not for selfishness, or a lack of charity, or any other sin. If my children turn out to be Aspergic or autistic--a very real possibility!--I will not seek to 'cure' them or force them into conventional ways of behavior for the sake of being conventional. But on the other hand, I will expect them to behave morally, with respect for others. If they are avoiding their chores--whether from the 'neurotypical' diversion of reading a book, or the 'autistic' diversion of watching patterns of light on the wall--they will be expected to complete them. If they are deliberately rude to a guest, they will be made aware in no uncertain terms that this is unacceptable. If they prefer to spend their spare time lining up spoons, that's fine; but they will not be permitted, because of their 'neurodiversity', to line up spoons when they are meant to be eating dinner or doing their maths. Depending on the children, this kind of approach may require only gentle encouragement; it may require intensive therapy and diet changes. But it isn't about 'curing' or anything of the sort--in fact, it isn't about their neurological makeup at all, because I would treat neurotypical children in the same fashion!

I hope this made some sense. Just trying to add another perspective to the argument, because I find that the argument as commonly argued is both impractical, and prone to missing the point. Hope I don't stir up too many flames here... we shall see!

I really, really love your post.
My 11 year old son is on the spectrum. I've been struggling with wanting to "cure" him, because "society" wants me to, but my heart/ intuition has been telling me the opposite.
Thank you
Thank you.
post #43 of 276
I think we need more words to describe neurological stuff.

There's organic autism- people who's brains simply function differently than "neurotypical" people's brains do, and they don't need to be "fixed" because they're not "broken."

And then there's brain damage (permenant or temporary) due to vaccine damage, allergic reactions to something in the diet and/or environment, head injury, birth injuries, damage from prenatal drug exposure, malnutrition, etc. That kind of brain damage may mimic traits from the autism spectrum- but it's not "normal" or "natural" for that particular individual, and it IS something that might be able to be "fixed."

I wonder how much difference it makes on a day-to-day level for most people with organic autism or autistic-like traits due to brain damage. Is "early intervention" really about trying to "cure" the child or is it about focusing on the child's unique way of learning and maximizing the child's potential?

If dietary changes reduce "autism like symptoms" or make somebody's organic autism "appear to be a milder case" then can't that simply be phrased as "I feel heathier when I eat this way"? Any food that causes neurological changes in an individual probably has other negative health effects as well, and it's probably wise to avoid those foods anyway.

My DD and I probably have ADD (innatentive type) which I beleive is considered to be on the autism spectrum. There were certain things I felt needed to be "fixed"- taking synthetic crap out of DD's diet,and removing that plus gluten and dairy from mine, is maximizing out potential. It's not changing who we are or how we think, but it's definitely worth the effort to change our diets.

Both of us can get uncontrollable rages from innapropriate food choices. It feels like something outside of us, not a natural feeling that's part of who we are. Stopping that is a good thing! But DD will never be able to learn the same way her sister does, and will probably never fit well into a typical school setting. I'd rather homeschool her than try to make her fit the school mold. I want to focus on her strengths, not her "disabilities".
post #44 of 276
I have a hard time with this subject for many reasons.

First, I have a dear friend whose teenage son is profoundly autistic. He only functions on an infantile level and there's little hope he will ever be capable of any self-care (he is still in diapers, for instance). He is now too big for them to care for at home and I am HEARTBROKEN that they are having to place him in a residential home where the chances are much more likely of him being abused. I don't think that the neurodiversity crowd would consider that outcome a victory?

I also don't think we should just allow our children to be poisoned and become autistic/etc when they wouldn't otherwise be that way. There are some people who simply ARE autistic, dyslexic, whatever. The woman who created the website, etc is a great example of someone functioning pretty well! But I don't think it is morally defensible to allow kids to be exposed to poisons/toxins and say any result of that isn't a problem.

On the other hand, I have twins who have ADHD and even with "treatment" (such as a diet that excludes things that cause their behaviors to go out of control) they will always be "neurodiverse". They just do not think like the majority. My husband (not their father) is "dyslexic" and is quite brilliant with computers. His parents are probably as anti-neurodiverse as you can get. They not only never encouraged him to learn different styles of communication/reading/etc but mocked him and discouraged him. It wasn't until we met (he was 26) that he learned how to read properly. He truly didn't believe he could read. Now he's able to do a pretty darn great job on things like King James Version Bible (not easy for anyone). He COULD read and communicate well, it just took a different approach and confidence that his way IS ok.

So I guess I'm torn on the issue. I don't think nothing should be done (especially where it is needed), but I don't think some neurodiversity is the worst thing ever either. And I don't think it is evil of NFL people to want to prevent unnecessary exposure to toxins/poisons. Those things cause problems besides autism as well, such as diabetes, cancer, etc and who can argue those are entirely negative?
post #45 of 276
before there was a pathology, a diagnosis, this was simply 'the way people were.' and you just accepted it. you didn't have to understand it, but you accepted it at a certain level.

and by 'you' i mean the family, the culture. these persons were 'strange' and 'different' but it wasn't a 'disorder' or a problem that needed to be fixed (normalized). it was just their strangeness.

of course, that strangeness could land them in a heap of trouble--horrible assylums, extreme abuse, and what have you--and so the need to hide the discrepencies was imperative.

when we have the pathology/diagnosis, we do have a language and an explanation and a different kind of an acceptance, but with this comes the need to 'fix' the scenario, assuming it can be or needs to be fixed.

i think that certain balance can be struck about this. the benefit of a pathology/diagnosis is that the individuated needs can be met. this person thinks and learns and relates differently, and therefore instead of being afraid of these differences, or needing to absolutely normalize them, or needing to shun them, we can learn about their methodologies (and they, ours), and we can then come into real relationship.

so, yes?
post #46 of 276
Quote:
Originally Posted by meowee View Post
I have been around profoundly impaired autistics who could not communicate even with sign language, keyboard, or pointing (and who were non-verbal). Obviously when you spend a lot of time around someone you learn to read their cues, but that's not enough to get an answer for issues like, "What is your opinion of Autism Speaks?" "What is your opinion of this proposed bill?" "What is your opinion of this candidate's stance on autism?"
being able to answer those questions does not determine your right to live though
post #47 of 276
Zoebird,
I think your understanding of history is off. People weren't "just accepted" the way they were. Never. They were shunned, locked away, hidden from view.etc. My grandfather's brother suffered a brain injury as a teen and he was "put away". I never knew he existed until after my grandfather died and I began researching family history. I was born in the early 60's and Down's Syndrome kids were routinely placed in institutions".
post #48 of 276
Quote:
Originally Posted by monkey's mom View Post
But I don't think the majority of folks feel that way about it. Not that that makes it right. But I don't think most parents of kids who've been diagnosed with autism or deafness or food allergies are pumping their fists into the air and celebrating at the news.
noone is saying we celebrate in the streets at dx, but we accept our children for who they are and not continually search for a "cure"
post #49 of 276
Quote:
Originally Posted by Nankay View Post
Zoebird,
I think your understanding of history is off. People weren't "just accepted" the way they were. Never. They were shunned, locked away, hidden from view.etc. My grandfather's brother suffered a brain injury as a teen and he was "put away". I never knew he existed until after my grandfather died and I began researching family history. I was born in the early 60's and Down's Syndrome kids were routinely placed in institutions".
i think that aso depends on the culture you live in, my grandmother adopted a mentally disabed child in the mid 70's. I dont know her official diagnosis, and my grandmother has never made her out to be a label, she just is who she is. And my aunt has always been freely accepted in the world.
post #50 of 276
nankay: i included that aspect of history in the post.

by accepted, i mean "just the way it is." and then people had different responses--either the eccentricity was downplayed and the individual was supported (more or less--though still likely subject to isolation in some form or another) or the differences were too great for the community/family to downplay or support and thus the individuals were subject to institutionalization and/or abuse of various sorts.
post #51 of 276
Thread Starter 
That's right. If a child was born in that time who was different, a lot of times, they would be locked in basements or put in institutions from the time they were born. The family never discussed these people and even other children learned not to talk about them. They no longer existed. There were a lot of institutions back then that didn't even do what they do now. At least now, some institutions at least try to "help" (not all, but very few) and I'm sure the richer people in society had access to these facilities for their children. The middle and lower class families, though, didn't have access to those institutions. There were places that would just let children die because there was no other way to help them. I'm sure there are still places like this in the world, but no one ever talks about them. People were getting parts of their brains cut out to make them more "normal". Children would get slapped and abused by therapists because "it was the only way they could learn".

Has anyone ever heard of the Judge Rotenberg Center? It's a school in Massachusetts that still uses electroshock treatments on children and teens for really minor things. People get shocked just for flapping their hands (usually, flapping your hands is a way of communicating that you're excited or anxious, depending on the context). This isn't a school from the 60s or some other backwards time. There are children who are enrolled in this school. There are still places out there like this, and it's truly frightening to me that society thinks we should do away with these people just because they're different or because we think there's no other way to help them. In mostly all cases, there is absolutely no reason why people should be in places like this. On that site I posted earlier, there are articles that deal with the topic of institutions that were written by people who were in them. They are great accounts as to what these places do to people.
post #52 of 276
I truly don't understand why one wouldn't want a cure. Why wouldn't I want to make my daughter's life a little easier? I worry everyday how (if??) she's going to make it in the world. She has faced cruelty and humiliation so many times--I couldn't live with myself if I had the power to change that. Society is what it is..There are certain parameters of behaviour ..that's why it's a "society". If my child were uncommunicative, still in diapers as described by a previous poster, who wouldn't wish for a better life for that person?? I just don't get it at all.
post #53 of 276
i don't think people are saying that it's 'all or nothing.'

certainly, i want individuals with severe incapacitation to have a better life in whatever way is possible to create that. sometimes, that requires institutionalization (hopefully in a safe environment) because the family simply doesn't have the capacity to care for that person at their level of need. and, often medications and related processes may be helpful in alleviating the problem of the incapacitation.

but we are talking about a variety of things--in this process we could be talking about people suffering from injury to the brain, or people suffering from birth defect (organic aspect) in the brain/body that affects the mental/intellectual/etc capacity, or we could be talking about mental illness situations, or metabolic problems (as people have brought up food allergies), and so on.

so, in a lot of ways, this is a very broad topic.

and i think that there's no wrong in striving to find ways to help people take care of themselves and participate in the larger culture--but i don't necessarily think that this requires complete normalization.

for example, deaf people (and thereby deaf culture) is struggling with the very personal and emotional issues that have arisen due to cocleal (sp?) implants. many deaf people fear an end to the valuable and diverse "deaf culture" that exists, and many feel personally afronted that hearing parents would give an infant or young deaf child a coclear implant before that child has had the opportunity to engage in deaf culture as well as their family.

and yet, they also admit that the benefits of the coclear implant are many, and that perhaps this is the "cure" for deafness. many adult deaf people have chosen to get the coclear implant for different reasons, and many have chosen not to for various reasons as well.

this is not to say that when we're dealing with something like autism spectrum processes--and particularly when we're speaking of individuals who are severely incapacitated by these processes--we are saying that it should "just be" one way or another, or that there shouldn't be the active process of seeking methods of improving their lives at every level, particularly in giving them increased capacity.

but rather, that there needs to be both an acceptance of the diversity as well as a process of choosing which methodologies and approaches are best for that individual.

for me, a child with a very functional form of aspergers is very different from the incapacitated young man with severe autism. in the first case, i will willingly accept a process of neurodiversity--because the individual is happy, functional, and just different in the way of receiving and giving information.

in the second, i see not only a need for vast acceptance, but also vast support for the family emotionally and in any other capacity possible, and also the strong desire to say "what can be done, scientifically or what have you, to make this person's life better, to create capacity within him?"

certainly, it's not all or nothing.
post #54 of 276
Thread Starter 
What a lot of people who propose the idea of neurodiversity argue is that if society didn't treat people with these difficulties the way they do, life would be a lot better for them. They could be accepted as people instead of shunned. If people were more tolerant, there would be a lot more opportunities for people. Sure, certain people, like criminals, shouldn't really actively be a part of society (they shouldn't totally be shunned, but they shouldn't be selling cookies for the PTA, either) but people who have differences didn't commit a crime. They're just being themselves. I don't see what's wrong with that. If a person wants to change himself, that's great. If he wants to do the diets and therapies and that works for him, that's awesome. (A lot of people, myself included, argue that the stuff people have to cut out of their diets shouldn't be in food in the first place, but I digress.) If someone doesn't want to do these therapies, either because they don't work for that particular person or for whatever reason, they shouldn't have to. That's mostly what the neurodiversity movement is: letting people have a choice about what to do with their bodies and minds and treating them like people. When people use the statistics and the epidemic language, we're not seen as people. We're seen as numbers and problems that society has to deal with, and it's very harmful for everyone, not just for the people being referred to in this manner. It's weird to me that people teach their children to respect all people, no matter who or what they are, but then go back and say there are some people in society (not talking about criminals or people who "earn" these titles, people who are born into this category,) who are a problem and who should not be respected.

By the way, Amanda Baggs is the author of Getting the Truth Out. She isn't one of those people who can blend into society. She can't talk. She needs to use a communicative device. She does injury to herself and uses diapers. She has been in institutions and has helpers who live with her. Yet she still doesn't want a cure. One thing she had to say about diapers in particular is that there's a reason there are adult-sized diapers: someone has to use them. She said there's no shame in using tools like helmets, diapers, speech boxes, switches, what have you. They're tools that make someone's live more livable. People could argue that treatments and medications make people's lives more livable, but sometimes, they don't. There are people who take medications and they work for them, but there are also a lot of people who have been on medications and committed suicide or generally feel like crap. It goes both ways, and the individual person should decide what's best for them, not the people around them. Why do we have to change these people? Why can't we, instead, change society?

Quote:
Originally Posted by Nankay View Post
I truly don't understand why one wouldn't want a cure. Why wouldn't I want to make my daughter's life a little easier? I worry everyday how (if??) she's going to make it in the world. She has faced cruelty and humiliation so many times--I couldn't live with myself if I had the power to change that. Society is what it is..There are certain parameters of behaviour ..that's why it's a "society". If my child were uncommunicative, still in diapers as described by a previous poster, who wouldn't wish for a better life for that person?? I just don't get it at all.
post #55 of 276
Quote:
Originally Posted by Brigianna View Post
Regarding the expenses of social services to accommodate neurodivergent people who may be unemployable... I will say that I don't believe in self-sufficiency; I believe in interdependence. A neurodivergent person who may not necessarily be able to be conventionally employed is nevertheless a valuable person. Neurodiversity benefits society as a whole. Naturally different ways of thinking and being are how we get creativity and new ideas and unconventional approaches.
I totally agree. Neurodiversity does benefit everyone.

But what about people who could function with fewer, or no, social supports, if they were willing to take their medication? I agree that people shouldn't be forced to accept treatment they don't want, but on the other hand, should people be forced to pay for another's choice? If its okay to foist the cost of my choices on other people, then I would really prefer not to work and to have a great nanny help me occasionally with childcare. I'm not NT, and I'm not autistic, and I have a neurology that would make life so much easier for me if I didn't have to function in mainstream society. Yet, although I think society should be more willing to accommodate and support people like me and ALL people who are not NT, its also my responsibility to take care of myself and my family even when its hard. Unless I am just completely unable to do so, and its not a choice.
post #56 of 276
i think that the medication issue is truly complex.

if we are living in an inter-dependent process, though, the concept of "who will pay" becomes less of an issue. this might be because of the 'all get fed' aspect of this idea.

i think it's tough, though, because i value individual choice in regards to taking medication, i value self sufficiency, but i can accept varying levels of self sufficiency as well.

tough questions.
post #57 of 276
Quote:
Originally Posted by Nankay View Post
I truly don't understand why one wouldn't want a cure. Why wouldn't I want to make my daughter's life a little easier? I worry everyday how (if??) she's going to make it in the world. She has faced cruelty and humiliation so many times--I couldn't live with myself if I had the power to change that. Society is what it is..There are certain parameters of behaviour ..that's why it's a "society". If my child were uncommunicative, still in diapers as described by a previous poster, who wouldn't wish for a better life for that person?? I just don't get it at all.
because a "cure" would make my ds cease to exsist. noone is saying dont do therapys that help your child function more, we are saying we dont want to cure or eradicate it.
post #58 of 276
Thread Starter 
I think that, in regards to tax money being used to support people, there needs to be a middle of the road attitude about it. There are people who honestly cannot work even if there was an opportunity for them to get a job. They truly deserve government aide, or, even better, money given freely from individual people and charities. Then there are people who would be physically and mentally capable of getting a job but no one wants to hire them because of their situation. That's where changing society's views of people would really come into play. It would increase the number of people who would be able to get jobs to support themselves, or at least lessen their need for taxpayer support. Then, of course, there are people who purposely drain the system, and that's bad for everyone. It's these people who make people think, well, maybe I won't work if they're just going to take all of my money anyway. I would much rather have tax money go to people who truly need it to live rather than pay for senseless wars and whatever stupid thing the government decides to blow our money on. As a society, we are a community of people. If your neighbor's kid crashes his bike in front of your house and you see him, you would go help him up, right? To me, tax money going to those who truly cannot support themselves is no different.
post #59 of 276
Quote:
Originally Posted by zoebird View Post
i think that the medication issue is truly complex.

if we are living in an inter-dependent process, though, the concept of "who will pay" becomes less of an issue. this might be because of the 'all get fed' aspect of this idea.

i think it's tough, though, because i value individual choice in regards to taking medication, i value self sufficiency, but i can accept varying levels of self sufficiency as well.

tough questions.
also medication may work on one person, and not on another, it is not a cure or a given treatment
post #60 of 276
I'm not sure it's a black and white issue (at least for my family).

Ean has sensory processing disorder, plus a host of other difficulties that seem to fall outside a simple SPD diagnosis. We've not gotten a formal diagnosis yet (other than SPD) but he most closely fits an Asperger's DX. He stopped making eye contact at 15 months -- when he got to the point of being able to understand the question, we asked him why he didn't look people in the eye. He said it hurt too much. We started him on a GFCF diet and within 44 hours he was able to have a conversation that involved sustained eye contact. DH and I were so overjoyed we sat in the kitchen and cried. Ean happily exclaimed that it didn't hurt anymore.

We have continued the GFCF diet -- not because it's a "cure" or not becuase we don't accept him for who he is, but because we want to continue to do something that has such a profound positive affect on his life. Not only has his eye contact improved, but his attention, mood, ability to follow directions have also improved. He no longer gets an ear infection every other month, and the dark circles under his eyes are pretty much gone. Does accepting neurodiversity mean that I should just let him gorge on gluten and casein?

Here's what I believe about my son -- he's different and he's amazing!! No matter what I do or don't do, his brain will always work a little differently than everyone elses'. That is 100% A-OK with me!!!! I have and will continue to teach him to celebrate his unique way of thinking and acting -- but I will also do my best to balance that celebration and acceptance with teaching him to function in the world. Here's a perfect example -- he's a hand flapper. Every time he gets excited or tries to communicate anything, he flaps. It makes him look a little odd and it is a little off-putting to other kids. More than anything else right now, he wants to be accepted by his peers -- so I've been focusing on getting him to flap a little less. Same thing with being a close-talker -- it's a bit offputting, he wants friends, so we're working on learning how modify his behavior so he's more accepted by his peers. I don't think these things make imply that I don't accept him though....
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