The unfortunate young lady featured in this misleading web site obviously has many more problems than autism alone. One only needs to look at her face to see that she obviously has some kind of genetic syndrome that has had a significant effect on her physical, and probably intellectual, development. This lady is overweight, possibly obese. There's a good reason why obesity seems to be found a lot in association with intellectual retardation. Many genetic syndromes that can cause intellectual retardation also have obesity as a very common symptom. This is because the regulation of body weight and appetite are controlled by a number of different complex systems that involve the brain. Body weight is like intelligence in that it is a thing that can easily be messed up by genetic glitches, as both things are complex and sensitive systems.
I was watching a documentary the other night about autism and MMR. Some boys with autism were filmed in the doco. One boy was described as severly autistic by his father, who still seemed to have a good and affectionate relationship with his boy. That boy certainly seemed odd in his movements, but I thought there wasn't anything really strange about the way this boy was put together physically. Another autistic boy shown in the doco I thought was quite different. He didn't seem alert or active like the other boy. He didn't seem to do much at all, and he had coarse facial features and very thick lips, like a lot of non-autistic intellectually disabled people have. Sure he might have autism, but what else has he got? Doesn't anyone care to get this kid a full and proper diagnosis? This boy's mother was a leader of a curebie movement.
This site was posted about in the general section, its a 'trick site' if you will.
It gives a parody of another site which is curebie, the problem is that you have to ge through quite a few pages before the 'truth' is revealed.
I think the point can be lost because a lot of people wont keep reading something they find objectionable.
Noetic, If you knew anything at all about genetic syndromes, you would know that the appearance of facial features is an extremely important characteristic that is used to diagnose such syndromes. Here is a list of just a few genetic syndromes which are diagnosed based on characteristic facial features as a "symptom"; Down's syndrome, Fragile X, Foetal alcohol syndrome, Cohen's syndrome, Williams syndrome. A couple of those syndromes also have obesity as a diagnostic feature. I think it is probably true that all or most genetic syndromes can be detected by characteristic facial appearance, including some cases of AS/autism. I know a person in real life who is the living image of an aspie author, who's photo I have seen in one of their books. But I don't believe the lady pictured in that web site has a very aspie-looking face. I think there could be some other gene involved with her condition. None of this has anythig at all to do with race, and this isn't racism, it's well establised medical science.
Quite frankly, I'm pretty fed up with seeing people who have genetic syndromes in addition to autism held up as examples of autism. It's simply misleading and it confuses the issues.
Forced 'treatment' with neuroleptic drugs can cause obesity.
I think the fact that the meaning of the site is hidden until some way in causes confusion, it is meant too in one sense, but it shouldn't be at the expense of miscommunicating an important message.
Maybe the real purpose of the site would be better revealed on page 2 or 3.
I think the fact that the meaning of the site is hidden until some way in causes confusion, it is meant too in one sense, but it shouldn't be at the expense of miscommunicating an important message.
Maybe the real purpose of the site would be better revealed on page 2 or 3.
I agree to a degree. Some people will likely get too upset too early and stop reading, before they realize what the real purpose of the site is. I got close, but find that due to perseveration, I rarely give up that easily, and I am glad I didn't.
I suppose not everybody has the time and patience to read all the way through. I was almost late for an appointment, because I lost track of time while reading through the many pages of this site.
Lili Marlene, have you looked at the picture of this autistic lady (I wished she'd tell her name anywhere) as a child? She looked like a normal, beautiful little girl to me. Abuse, psychotropic drugs, having her hair shorn so short and many other factors contribute to her looking the way she does now. Plus, she could use a little help in choosing her clothing, because her choice of clothes makes her look fatter than she is. Large breasts are no help, either. Another thing is that she doesn't speak or smile, and therefore doesn't use her facial muscles very much, and has a blank face as a result.
You know, I am fat, too. What will you say to me? I have rarely in my life had an 'average' weight. As a child I was spindly, as a teenager I was grossly underweight for the years I lived in an orphanage (not because I wouldn't have eaten, but because they served food I wasn't capable of eating, and having no money to buy myself food, I chose not to eat).
While pregnant I'd always gained a lot of weight, and due to either being pregnant or breastfeeding for 16 years of my marriage (I had eight miscarriages), never managed to lose it. Depression and binge eating as a result was no help, neither was carbohydrate intolerance.
I found out about the problem with carbohydrates only about two years ago, and should be on a high protein, low carbohydrate diet at all times. Too bad that my family won't believe me, and sabotage my diet as much as they can. Since I don't have the energy or organizational skills to always cook, I end up eating what my husband buys, or one of the kids cooks, or eating sandwiches. It's not possible for me to lose weight like that.
So, who knows why this lady is overweight. I think that it is pretty irrelevant, anyway. Maybe you manage to have a 'perfect' weight. Does that make you a better person, or make you smarter? This 'unfortunate' lady seems pretty smart to me, and not intellectually impaired at all. She just purposely appears that way in the first few pages of that website.
Besides, what do comorbid conditions have to do with whether she is autistic or not? Will my Tourette syndrome, fibromyalgia, asthma, allergies, stomach and bowel problems, psoriasis, etc........disqualify me from being considered autistic? I don't think so.
This site was posted about in the general section, its a 'trick site' if you will.
It gives a parody of another site which is curebie, the problem is that you have to ge through quite a few pages before the 'truth' is revealed.
I think the point can be lost because a lot of people wont keep reading something they find objectionable.
I think that this is not intended to be for autistics but for "curebies"(one more term for the aspie dictionary) who would swallow up this sob stuff eagerly. It's a good site, I wish all NT whould read it.
Drifter, you have a good point there. Most NTs would love the first few pages, and she slowly but surely will later on guide them to where she wants them to be, hopefully changing their minds about autistic people.
I also like that she includes people from across the spectrum in her writings, giving people a glimpse into not just her life, but I felt into my life as well.
Some examples of where she describes my life very well:
The kids at school could tell, though (that you were different), and they beat you up, made you eat garbage, even a few times tried to strangle you. The teachers smiled and said, "Boys will be boys"
As you grew older, you considered yourself an alien, all kinds of strange things, to explain why you never seemed to fit. It's not just the social world that confuses you, but you're good at acting like you know what you're doing even if you don't. As an adult, you're stuck with no services, and you try to get a job. Employer after employer refuses to hire you because despite the fact that you're qualified, your body language makes the hair on the back of their necks stand up.
You finally get a job, but the daily difficulties of life, are way too much to handle. There's never enough downtime. You wish you could only do one - hold a job, pay bills, go shopping, prepare meals, and eat......but you have to do all of those and more. No matter how much you try to do, you're always falling behind.
Meanwhile, you get to watch your life slide more and more out of control, and find that the only option open to you - faking normalcy as best you can - is becoming harder and harder. Nobody sees it but you, though. And with all this time spent doing it, you're often disoriented and unaware of who you are.
Well, that sounds almost 100% like me. And it's true, nobody else will see it, and nobody wants to know how I really feel. They all say, but you seem so normal, I can't see how you could be autistic!
But then they're shocked when one day I say or do something so totally 'off' that it stuns them. And they don't understand, because they have never listened, that this is me, too. That in fact, that is the real me coming through!
If everyone would like to go back and read my posts carefully, they would see that I have not made any negative value judgements about overweight or obese people, I have simply stated the very long establised scientific fact that obesity is a symptom of a number of genetic syndromes, some of which also can cause intellectual disability. Is anyone willing to argue over that point, which is the point that I actually did make? Whenever Noetic appears on a thread I can detect the whiff of smoke from that straw man burning. That can't be a coincidence, surely!
The kind of obesity that is caused by genetic syndromes does not appear to me to have much to do with lifestyle factors, as it can be an unchanging feature that starts in infancy. I'm talking about people who are never an average weight in their entire life.
I still believe I'm justified in saying that a person who has a genetic syndrome that is recognised as a separate condition to autism should not be held up as an example representing all autistic people. I'm aware that most autistic/AS people are a mixture of sub-syndromes and /or comorbidities such as Tourette's, dyspraxia, CAPD etc, and that is why I don't even like the idea of a person who seems to be not affected by any identifiable genetic syndrome being held up as an example of all autists.
I would like to see what comments some curbie NT parents make after seeing it, and if they gotthe point, and did continue reading.
Actually...gives me an idea, I will post about it on an NT parents forum, just giving the link and see what people make of it on their own.
If everyone would like to go back and read my posts carefully, they would see that I have not made any negative value judgements about overweight or obese people, I have simply stated the very long establised scientific fact that obesity is a symptom of a number of genetic syndromes, some of which also can cause intellectual disability. Is anyone willing to argue over that point, which is the point that I actually did make? Whenever Noetic appears on a thread I can detect the whiff of smoke from that straw man burning. That can't be a coincidence, surely!
The kind of obesity that is caused by genetic syndromes does not appear to me to have much to do with lifestyle factors, as it can be an unchanging feature that starts in infancy. I'm talking about people who are never an average weight in their entire life.
I still believe I'm justified in saying that a person who has a genetic syndrome that is recognised as a separate condition to autism should not be held up as an example representing all autistic people. I'm aware that most autistic/AS people are a mixture of sub-syndromes and /or comorbidities such as Tourette's, dyspraxia, CAPD etc, and that is why I don't even like the idea of a person who seems to be not affected by any identifiable genetic syndrome being held up as an example of all autists.
Lili, I admit that you have a point here (or more than one). But this lady doesn't say that she is representing all autistic people. That's why she included descriptions of people on the spectrum who are quite different from her. The parts from one page I quoted represent me very well, but can't possibly be like her in many ways.
My sister is like her in quite a few ways. I believe that she is a fairly low functioning AS, or somewhat high functioning Kanner's. She was never cute, was fat all of her life (despite efforts at losing weight, she simply can't do it), rarely smiled as a child (and that hasn't changed much) and still, at the age of 49, has the emotional maturity of a ten-year-old (at most). She is of average intelligence (I guess around 100), has a good vocabulary, but is completely incapable of holding any job for longer than a year.
Eventually she can't stand the bullying any more and quits (after eventually, through stress I believe, having one illness after another). That has been the pattern for nearly thirty years.
I sent her links to German AS sites (her English is atrocious), but she won't face the fact that she is autistic. I don't push her, because with me being so far away, I don't think I'd accomplish anything but alienating her.
I know that mentally handicapped people very often tend to be overweight, especially people with Down's syndrome. But despite the fact that she was overweight right from infancy (the only fat child of eight), she is definitely not mentally handicapped (at least not when it comes to general intelligence). She seems to be one of the most foolish people I know (it's hard to be around her for long, she talks incessantly about the most unimportant things imaginable). But she manages much better in some ways than I do! Her appartment is immaculate, her bills are paid, she is organized. She can even do multi tasking.
I will post about it on an NT parents forum, just giving the link and see what people make of it on their own.
Let us know what they have to say about it, OK?
Yes, so far no-one has commented on the site.
Hi Laurentius, and welcome.
You said "We all have a genetic syndrome, it is our genes that describe us, yes all of us, Aspies, NT's the lot, I wonder what you know or don't know, who you advocate for or do not. If we start hiving off some sections of the community as not worthy of attention, who then are we speaking for at all ?
Laurentius"
Not sure if you are asking Lili, or addressing the site in general.
Do you think NTs would concede that they too have a 'genetic syndrome' or would they be affronted by it?
Not sure what you meant by 'hiving off'.
Lili is entirely correct that many genetic conditions include facial adn other characteristics, but I think that it is important to note that since autism is a spectrum disorder that different types of autism appear to exist, and that some may have different characteristics than others. Some of them may not even be genetically related and yet still produce similar clinical manifestations. As someone else said, the site does include depictions of other possible manifestations of autism to illustrate this point.
On the whole I think its a very clever and thought provking website. Websites and other materials coming directly from those with firsthand knowledge of profound autism or whatever you want to call it, as well as society's reaction to it, are very interesting and I wish there were more about.
I never said all conditions have facial characteristics, and I never said all physical characteristics not 'normal' indicated an underlying condition.
I mean that there are certain facial patterns which are characteristic of certain conditions. Fragile X for example very often results in a very long chin, which becomes more pronounced with age. Allagile (not sure of spelling) syndrome has a characteristic facial pattern which I cant recall the specifcs of, but it IS recognizable and fairly unique.
The fact that some conditions have facial characteristics doesnt mean that all do.
And its TRUE by the way. Its one of them scientific thingies you read about in textbooks and stuff... FACT yes thats the word.