Lying in your face

Post Reply New Topic

The co-morbids are termed as such because they haven't been determined or defined as part of what is considered autism. If the co-morbids are themselves considered a disease, they keep that definition, however that doesn't make autism a disease.

Every definition of a disorder and/or disease is a human construct; humans attempt to find related symptoms causing problems in a person, and identify it as a disorder or a disease; rarely is any condition determined on one factor alone. Human beings aren't composed of discrete systems, they all work together.

Autism happens to be one of the ones that are more complex and varied than others, so it's not too unusual that would present some level of misunderstandings in those trying to understand the disorder.

Is Aspergers or Autism Disorder an NT construct? That's hard to say, some of the folks that studied and defined it could have atypical neurology; we don't have a definitive way of determining that. It's in the past, those people are gone, so we won't ever know. Scientists are among those that typically do have some autistic traits, so there is definitley that possibility.

As long as there is a disorder, regardless of the psychological or physiological symptoms that are used to define it, it remains a human construct, some more clearly defined than others.

One example is learning disabilities in children that lack speech with Autism. The question that has been asked is are the learning disabilities a co-morbid or are they in part a result of the lack of speech which is part of a diagnosis for autism?

Some of the recent research that suggests that individuals with learning disabilities score much higher on IQ tests that measure fluid intelligence instead of crystalized intelligence, suggest that this may be part of the reason, because tests for fluid intelligence are non-verbal.

Without the research, we would have no understanding of this distinction. It's the type of research that organizations like autism speaks do, and it has the potential of making a significant difference in the life of an individual diagnosed with Autism.

Then there is the genetic research that has associated GI problems in autism to genetics. Is there a specific relationship to autism there? Only genetic research will determine this. Autism Speaks is specifically researching this issue.

Is it sham research? No, not if one understands the need to understand the bigger picture of genetics, autism, and GI problems.

The general public typically doesn't understand these research details, what is or isn't co-morbid with autism, or has any desire to understand it, so instead of making an effort to explain every detail to the general public, the words cure autism are used.

People directly associated with family members or friends with autism that have problems with speech, learning disabilities, GI problems, motor coordination problems, sleeping problems, self injurous behaviors, and all the other stuff related to autism, understand the struggles they cause, and would like to see answers in solutions provided by research; cure means eliminating all or some of these problems to these individuals.

Delays in speech, motor development are clinical features of autism; learning disabilities, sleep problems, self injurous behaviors, and GI problems are all co-morbid conditions.

There is the potential that they all could be termed clinical features seen in some with autism, if the research defines these co-morbid conditions as such. That though, is not going to make much of a difference to anyone that has the related issues, unless a "cure" or solution is found to end the struggles some have with these associated features/conditions.

There really isn't a holistic approach in the research related to autism; it appears the only hope of that was with genetics, but it has become more diffuse than clear, with research to date. If one peruses just the research autism speaks does one finds studies related to many aspects associated with autism.

The intervention that may be developed in the future to help some children with the ability to speak could easily be different than the intervention to help with GI problems, or any of the other issues related to autism that some find troublesome. But again though, without the research there is no potential for solutions.

i dont think autism needs any co morbid conditions to be dibilitating,its dibilitating in general.also why does everyone think autism speaks helps disabled children,and self advocacy is only for the highest functioning.also the highest functioning are quite disabled themselves.where do people get so many fase asumtions

aghogday wrote:

I guess there might be a polarity between my understanding of the word "cure" and that of the general public. But where do we draw the line between giving the public "a simple word that they can understand", and "deceiving the public and giving them false hope?" The use of the word has often struck me in the latter sense.

aghogday wrote:


It's true that all diseases and disorders are human constructs, but some are constructed better than others. While I think that it is perfectly valid to group a set of traits under one diagnostic label, and for that label to be used to access services and treatments; there is a point that must be reached at which something is clearly defined and known to exist, before we can start to speak of "cures." You cannot cure a diagnostic label. The research should be carried out in order to find out what actually exists, as opposed to making the assumption that a certain thing already exists and then trying to research what it is.

When I said it was an "NT" construct, I put it in inverted commas because what I meant was that it is something created by society to help manage people who don't fit very well into it's structure. It was created by society to serve it's purpose, and not by Autistic people to serve our own purpose.



But there are alot of problems here. One is that in my opinion, alot of what is called "education" is bs indoctrination designed to create cogs in a machine that produces things for those who rule over us. I have been able to see straight through it from a very early age, and I would constantly argue with my teachers; and it was deemed that I had a "learning disability." But then I decided to stop using my brain and just parrot whatever the teacher said, and my grades increased and my "learning disability" was cured! Find a way of making people utterly stupid and you will cure alot of "learning disabilities."

I am unconvinced about the "motor coordination problems" as well, I have often found it to be the case that because I think differently, I have different priorities. And people around me expect me to be concentrating on one thing, but I care more about another. And I'll mess up the thing that they expect me to be fully concentrating on, and thus it appears that I have
"motor coordination problems." And when you are surrounded by people who because they think differently, misunderstand everything that you say and do, you feel anxious and constantly under threat. And when you get anxious you make clumsy mistakes, so I really think that alot of what is called "motor coordination problems" is just more biased and subjective nonsense.

When it comes to people who injure themselves, obviously the cause of this must be that they are unhappy and they are directing the blame rightly or wrongly onto themselves. Granted you are probably speaking with people on the lower end of the spectrum in mind. But with many of these people, what should we say their problem is? I they unhappy because a diagnostic label has been created and given to them? Or is their suffering caused by the stupidity and bigotry of those around them? If people would only look in the mirror, and accept their own shortcomings, and the fact that conformity to their standards is not god. Then a good portion of these problems would be solved, and those who do have a real medical problem that is genetically based would then be visibly separable from those who just suffer from bigotry. But people prefer not to do this, and chase after quick-fix solutions and magical cures instead.

aghogday wrote:


I don't know if your talking about ci here, I joined when he was a frequent poster but I was just in the process of gaining the confidence to post more often. I did find him quite interesting as he thought about everything in a totally different way, but he got banned before I gained the confidence to debate with him. I was surprised at the level of animosity towards him from some members, and some of it did seem related to his writing style which I find sad. I gathered that he didn't like ASAN very much, but I never figured out why. But he did also use terms like "pride mite" and called one member an "aspie pride-mite brat," some of the animosity towards him might have been due to this as well.

OrangeCloud, spend some time on the parenting board and you will learn how real motor-coordination problems can be. We wouldn't even know our son had AS if it hadn't been for his frustrations with the physical aspects of writing. There are kids who desperately want to do physical things, but cannot. If it weren't for motor coordination problems, and similar issues, my son would still be playing soccer - he LOVED playing soccer, but eventually it got too competitive - and physically dangerous. It was with a heavy heart that we decided, with him, to only play to level X. Now he bikes, but he's been hesitant to join the school mountain biking team because he is worried about how his motor coordination issues will play out in a competitive environment, but any time his friends hit the mountain - he's there. Usually comes back full of scrapes and bruises, but he oddly loves it.

My child still can barely handwrite, but he's gotten fluid on a keyboard and does just fine.

But if he could fix just one thing in himself, I would place bets on it being the motor issues.

So be convinced. It's real.

I would say that motor-co-ordination skill problems are real, but in a subjective way. The problems become real when society expects that everyone should have good handwriting. My handwriting used to be pretty awful as well, it wasn't readable by anyone else except me until I was about 12. Handwriting might soon become obsolete and if your son is fluid on a keyboard then there will no longer be a "problem" there.

It's the same with biking, I too crashed alot and got injured, and it was harder for me than a normal person to learn to ride a bike safely, but I can do it really easily now, and I hope your son can overcome his problems one day as well.

But in the long history of human evolution, it's only been the last few hundred years that society has expected us to ride bikes or write with pens. These things would have been no use to our paleolithic ancestors. And I would simply argue that individuals who cannot perform some physical tasks that have only had some social meaning in the last few hundred years, don't necessarily have anything physically wrong with their brain.

They may struggle with some tasks expected of them and excel at others, like a dyslexic person might struggle to write things down but excel at engineering. This dosen't imply that the part of his/her brain that controls writing is damaged, this is an oversimplification. It just means that this persons brain is constructed differently.

My son would call BS on the idea that most of it is only an issue because of social construct. Not even HE can read his own writing, and while the keyboard is a Godsend, it is minimal help with math, and you should see his face when he realizes he has to start a problem over because he isn't sure if that last step came to a zero or a six. Maybe a few hundred years ago it wouldn't have mattered, but he loves math, and its not like he's much better at shooting straight (he has riffle training) than writing well, so how well could he have hunted?

If he had to change the things about his unique brain that he loves to get better coordination, he probably would not, but this is a new layer. In the full history of AS in our family, NO ONE else had the literal PAIN he has trying to use his fingers. I've a little of his hypermobility/hypotonia, but he got it on a whole new level, and our story is not uncommon.

You have to see what these kids go through to really undertand it. A few AS adults on this site have that shared experience, and their help with adjusting and accomodating has been essential. I guess that ALL of them would put it high on their list for a fix, if a fix could be found without having to lose a gift in another area.

I know what it is like to have uneven skills, I am very much like that, and it makes for great stories. But with my son, it's at a whole other level.

I'm not saying run out and find him a cure, but I am saying that to swipe this particular co-morbid under a big "everyone is different" umbrella, and worse to suggest it doesn't really exist, is ignorant of the reality someone like my son experiences.

He makes no bones about it, to him "it sucks." He's accepted it and moved on, he's super cool that way, but if you ask him, he'll tell you: "it sucks."

There really is no definitive line for hope. And there is no real definitive line for what research and science may accomplish in the future. Cure in this case is really a synomym for hope. There are no definitive promises in scientific research or hope; the scientific research means hope and the potential for cure for the things that some individuals struggle with associated with Autism.

You hit the nail on the head again with "diagnostic label". When it is said cure autism, it doesn't mean curing a diagnostic label, it means curing those aspects of the diagnostic label that people struggle with. Those specific things that people struggle with have been identified, and the research is aimed at those specific elements/features/co-morbids.

The aspects of autism that exist in close to 30 percent of the population are no more likely to be cured than introversion.

I had a speech delay, serious motor coordination problems, which has been researched and associated with a problem in the cerebellum in the brain, extreme tactile sensitivity problems, but I did eventually learn to speak well enough to get by, never had serious GI problems, and had the academic advantages that a minority of individuals with autism have. For me it was a challenge, but not a disability.

I never was able to write legibly; could not understand why I found it uncomfortable to walk and run; could not run and dribble a basketball or coordinate my body with others in team sports. I didn't know I had motor coordination issues, I was just told I was clumsy and couldn't play sports, and would grow out of it. Exercise helped, but I never did feel comfortable walking alone, unless I had someone to copy walking next to me.

Fortunately for me most tests were multiple choice, where all one had to do was circle a choice, and that along with an excellent memory, was enough to put me at the top of my class even though I couldn't construct a decent paragraph in writing to explain a concept, or provide any oral presentations. Short sentences I could talk, but lengthy paragraphs to explain what I saw in a movie or read in a book were beyond my ability.

With tactile sensitivity, I could not touch anything manmade other than silk, so I kept my hands closed in a fist most of my life to avoid touch, and kept my shoes on to avoid touching carpet with my feet.

I never had to write anything until I got in to college, and very little writing or oral presentation was required through three degrees, in the early 80's.

Without good verbal skills or writing skills there weren't many jobs I could do getting out of college; I ended up working at a military Bowling Center for 18 years, learning the social interaction stuff, and when computers were invented, I gained a real ability to communicate for the first time in my life, and found an actual skill I could use at work to excel and get ahead.

The thing though, I can clearly see, is that if I had remained non-verbal as I was in early childhood, I would not just have had many challenges, I would have had a life long disability, because at that time there were no communicative devices for the non-verbal as there are today.

Why do some autistic children self-injure?

I can see why; the frustration of not being able to verbally communicate is not just an external issue, it is also an internal one; one must rely more on their senses without language, and in a world with overwhelming stimulation, not being able to tell people to turn it down, not only means turn the TV down, it also means turn the carpet off, or the textures on a couch, or the smell of perfume.

The sound of someone rubbing their hand on a couch or dragging their foot on the carpet, is as painful as if one experienced the torture of doing it themselves with extreme tactile sensitivity, as I experienced it.

If one is non-verbal they do what they can to communicate it to the the person to stop the torture one feels all over their body when someone rubs their hand on a couch. The pain of digging one's finger nails into one's skin drowns out the sensory torture in this case, that one can't communicate to the other person, "please don't don't rub your hand on the couch".

Unless another person understands tactile sensitivity, which the closest description to understand it for most people is the finger nails and the chalkboard feeling, there is no effective way to communicate this to someone without speech or a communication device, other than pulling their hand away from the couch. It's hard enough to explain in words.

Then there is the piercing hypersonic electronic security devices that only one can hear as they follow along with their parents in stores, the bright flashing neon signs that line the streets; that was in the 60's and 70's, multiply that by 1000 now, with Highdefinition TV and a world full of random stimulatory attacks.

I could talk about this with my mother as a young child, and she didn't think I was crazy, but there were no answers for why, she accepted and adapted as I did. I didn't talk about it to other people, they couldn't possibly understand. Without the ability to verbally communicate this to family, my life would have been one of sensory torture.

But, it wasn't, I lived on the river, I could escape outside and watch the water, and the crabs, and enjoy every sensory nuance of nature that was played at the volume it was intended to be played. The grass felt good on my bare feet unlike the carpet, and there were no couches with rough manmade textures, neon lights, or piercing electronic alarm device noises walking through store doors.

I worked with the special olypmics folks at the Bowling Center, and there were one or two children considered autistic in that group that could not speak; the only thing that separated me and my three college degrees and special olympics was the fact that I could speak, had an excellent memory and could answer multiple choice questions. I could vaguely sense the commonality between myself and them, but understand it much better now.

This is a small sliver of what it's like to have actual autism disorder at an extremely high functioning level. Everything I talk about here is physiologically based: speech problems, motor coordination problems, sensory integration problems. This is no one else's fault in society, and can be inherently disabling.

The largest focus of my life, was getting comfortable in my own skin, literally comfortable in my skin. It wasn't a psychological issue it was an actual physical one. The Doctors, psychiatrists and psychologists that don't experience these physical aspects can't possibly imagine what that challenge is like for an autistic person that experiences life like this. One cannot escape their senses, all they can do is adapt the environment to the best of their ability around their senses.

Most in society don't have these physiological issues, and even with a detailed explanation, it can't possibly match the experience. The most inherently disabling aspect is the speech part, from my perspectrive. I think it is is worthy of billions of dollars of research to allow a child the ability to speak and/or communicate.

The development of some speech allowed me to adapt, and focus on the larger things in life, like why were people in middle school telling me I didn't deserve to exist.

For one that doesn't gain speech or a way to accommodate that, much of life is escaping the sensory torture of manmade things; trying to understand all the overwhelming sensations in life that can make it a torturous one without adaptation and communication. If they are lucky they live somewhere close to nature where they can escape from manmade things.

The individual above, that had HFA, was much more disabled by sensory integration issues than I was in life; he couldn't drive, and required two ABA therapists in midlife for his sensory integration issues.

NT is a construct from the autistic community that in effect, the way it is commonly used by the autistic community, is used to describe society comprised of individuals different than they are that they feel do not accept and accomodate their differences.

In this individual's case "pride mite" was a word he used to describe a subset of those labeled with autism, that he believed was against him as an individual that didn't care to understand his differences and ideas that set him apart from them.

For him the "NT" world, which is not a distinction he understood, was kinder to him than the autistic community; they were the behavioral therapists trying to help him, not the autistic community that criticized his grammar and ideas.

He was every bit as offended by the autistic community as some who call themselves part of the autistic community express discontent over the "NT" world they suggest they live in.

He was offended by ASAN, because they were suggesting that this autistic thing was only a problem with society, although they didn't require two behavioral therapists to help them deal with serious sensory integration problems to get through the day, and didn't see the institutional life, that some with autism depend on for survival.

Society understands autism that way, that is the reality the media has portrayed, however, it is a reality for some, no lie, no exagerration.

It is a place that Vermont Savage has been and understands as a reality, that baffles him as well, when he hears people suggesting that autism is not an inherent problem, instead one created by society.

To me the hardest part of autism that some likely experience is trying to find a comfortable home within one's body. All the other stuff one can escape from, at least temporarily, but for those that never find comfort in their body, because of sensory integration problems, there is no escape.

The reality is that many people that are more disabled by autism depend on society for support, it is their lifeline, it's not as simple as a different point of view or different way of thinking.

It is truly an inherently disabling condition that for some, requires 24 hour support. It doesn't take any co-morbids to create the problems. The inability to speak, and serious sensory integration problems are enough all by themselves to make it inherently disabling.

I see the social aspect of autism, but I see the physical aspects, that don't seem to be talked about much, because those that experience them the worst, are likely those that cannot speak at all.

It reminds me of a documentary program about a young girl with autism that obviously lived a torturous sensory life. She banged her head, smeared feces, and was considered severely mentally ret*d, but when the behavioralists taught her how to use a keyboard, her depth of understanding of the world was amazing, once she could express it.

She told her father, if only you could live in my body for one second you would how hard it is to be inside this body, trapped, a kind of hell, that one did not ask for or deserve.

Some learn to accommodate, some don't, but in these cases accommodation comes from society, the technological devices that allows one to communicate, the therapies that allow one to adapt to their sensory experiences, the financial aid required for subsistence.

Looking at it from the perspective of the girl in the documentary, I can't possibly understand how anyone could consider that a problem with society. That is what Autism Speaks is focusing on, the disabling part that truly causes some children discomfort and misery; not a different way of thinking, that society does not understand and accommodate.

The problems of those with Aspergers are not as focused in the physical realm, which makes for a huge difference in outlook over what Autism is. It was the individual's above opinion that was suggesting that ASAN was trying to cloud and sugar coat the reality of what is.

In turn, he did not understand how the depression and anxiety associated with Aspergers could be bad compared to his experience; after all they could go to college, drive, be independent, do all the things, he couldn't imagine doing in life.

The answer is, there are no easy answers. There is no one Autism that belongs to one individual or characterizes a group of individuals, just like there is no one "NT" that belongs to one person and characterizes a group of individuals.

There are millions of individuals on a vague spectrum that continues on further perhaps through billions of people in the world. Maybe 30 percent. And then there is a continuing spectrum of human variation that continues throughout the rest of the population.

Every person is as unique as a snowflake, we all look for the order and similiarties in others that we perceive, but each individual lives in a Universe that only belongs to them.

So this means there is research to help some that cannot speak, some with GI problems, some with sensory integration problems, motor coordination problems, depression, anxiety, all the other issues that can be discretely defined as associated with the disorder. It cannot possibly be studied holistically as "autism" because there is no one autism to study, nor is there one autism to cure.

Not everyone has time to read a novel or a DR:TL monologue like I am coming to the end of, so instead the short version is biomedical research leading to causes, cures, prevention, treatment, and intervention of Autism. The details of the condition is different in every autistic person, and family members experience of it.

And then there are movements for civil rights for those who think differently than others for accommodation in society, which are details that are of equal importance to the experience of autism that those individuals live with.

There are over 2000 organzations associated with autism in the US. It's way too complex for any one organization to wrap their minds around. There should be respect for all these organziations that are attempting to help the perceived segment of the autistic population that they focus on. No one organization can possibly do it all.

There is some interesting research that suggests that in adolscence, even though the motor skills problems continue, some children improve their handwriting as their perceptual/reasoning intelligence increases, adapting using these skills, in a visual manner, rather than with actual fine motor skills alone.

If I looked at someone elses handwriting, and focused on it using it as a visual image I could approximate that person's handwriting, but it was an intense conscious process. When it was essential that my handwriting was legible I could adapt for short periods of time this way.

I also had the ability to copy another person's signature no matter how complex it might be, where they themselves couldn't tell the difference. I suppose that came along with my own adaptations through perceptual intelligence, rather than actual fine motor skills.

It's kind of neat coming across some research years later, that offers insight into why. I suppose the benefit for children in this case might be to visualize they are writing neat and try to copy that image in their mind's eye. Not sure everyone can do that, but it worked in essential situations for me.

I personally think that fine motor coordination may be related to speech and the physical actions related to speech as well as writing. The ability to enunciate clearly was always a problem for me, and one for my sister as well, who had the same motor control issues.

Same process though for adaptation, if I pictured the words in my mind before I spoke them they were much clearer. Writing it down and reading it silently before I spoke helped as well.

It's amazing, all the interesting adaptations one can come with in life, through trial and error that works.

And for focus and memory, writing notes in school really helped me. I couldn't read the notes that well, to reference them, but the activity seemed to reinforce my focus, and memory.

I went to one Aspergers group, where an individual actually took notes, most everywhere he went to keep his mind focused and organized, even at Church.

ahogday wrote:

I guess there is a polarity between two points of view on Autism. One is that an Autistic person should change to accommodate society, and the other that society should change to accommodate the Autistic person. If an ambulance going past causes me great pain because of the siren (which it actually does,) what is the solution to the problem? Should I have therapy to help with my my sensory issues or should I campaign for ambulances to turn their sirens down because they are discriminating against autistic people? I think the correct solution here is simply which one works.

Of course if you struggle to communicate your ideas, then therapy is probably the better option because you can't ask people to turn the television down or stop talking so loudly on the phone. Whereas if you can communicate more effectively, and you only have a few sensory issues, then campaigning for society to make changes might be the better option. Does society have a problem? or do I have a problem? Neither of these statements are true or false, its simply a question of which way of looking at it yields better practical results.

Looking at it from the "society has a problem" perspective, means that I will be offended by words like cure, looking at it from the "I have a problem perspective" I might get excited over the prospect of a cure. But cure is only a word so perhaps the dispute is simply a semantic one.

With regards to Autism Speaks, part of the dispute is as to whether their approach will yield good practical results or not. They view Autism strictly through "Autistic person has a problem" lens, but I would argue that it is important to look at the situation in both ways. The way Autism speaks approaches these issues, probably isn't going to yield any practical benefits for those with Aspergers syndrome. Although people with Aspergers syndrome can't be said to struggle with Autism in the same way that the girl in the documentary you described, we do still struggle with many things, anyone on the Autistic spectrum struggles in some way or else they wouldn't have been diagnosed.

I guess from my perspective, Autism speaks pay themselves very high salaries and I don't personally benefit from anything they do.. And it looks to someone like me that they might be taking everyone for a fool, and it might be all about money and not helping anyone. And I guess from ci's perspective, Autism Speaks are doing a good thing in looking for a cure whereas ASAN are downplaying the seriousness of his issues, and could damage his capacity to get the help and support he needs.

I think people like me and him probably need to understand one anothers point of view better, and recognize that we may understand the same word totally differently. Thanks for your replies again ahogday, it was interesting reading your account of your sensory issues and I can relate to some of them. I can't stand the feel of cotton wool, and hate high pitched noises. I have to walk into my town center the long way because of all these devices that emit high pitched sounds to stop children from congregating. I am 28 years old and I can hear them from a street away. But I must admit that I find it difficult to understand how someone struggles to become comfortable in their own body.

I'm not sure that those that struggle the most ever come here to communicate what it is like. There was one individual that was gifted in life in youth, that lost the ability to speak later, that offered some insight, but I'm not sure if a completely non-verbal individual from childhood on, has ever expressed an opinion here, or anywhere else on the internet on what it's like to have autism.

I remember an individual reported to be a non-verbal individual that was going to give a commencement speech at highschool, so it would be great to get that insight here. Except for that documentary, I haven't really witnessed that type of autistic communication close up and personal. It seems unusual that we wouldn't have that type of input here, considering how popular wrongplanet is.

I think we do need to hear those voices to better understand their actual points of view, in life. To see if they have similiar ideas about the autistic community as Ci had.

I remember him stating that the autistic people he knew at his Center never socialized online in the Autistic Community. At least from what I've seen, that seems to be the case, in general.