Wonderful Asperger Poster

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Just because no one has a good handle, doesn't mean one cannot. They will have a good handle if they actually put their mind to it sensibly, and I intend on clearing it up. I don't trust anyone who says that they can't do something hard by saying that it's impossible. If it were the case that it made no sense then why trust so much in officialdom for your answers aghogday?


I am not denying it. I am saying how people see it is wrong.


The problem is that Autism is a puzzle icon when really what it should be are thousands of puzzle pieces, some of which are already diagnosed elsewhere.

Officialdom is just a method of seeking order. Most of my answers come from others that are a great deal more informed than I am. Google is a great resource for that. Life has some order, I think most of us find it as we can.

I'm not suggesting people won't get a better handle on autism in the future, but it's never going to be close to a perfect science as long as subjective human analysis is required.

Misdiagnosis happens in the psychology field, as long as subjective analysis is required that is going to happen in some cases. If there were tests like there are for epilepsy, there would me a more concrete way of diagnosing autism.

The DSMV is moving away further away from the biological model, measurable biological developmental delays are no longer the crux of some of the diagnoses, instead behavioral analysis has become key. That generalizes diagnosis further, and there is the potential for even more subjective errors in diagnosis, in the future when the DSMV is put into effect.

There are no concrete disorders in the psychological field, only descriptions people have invented; Autism Disorders are part of that.

Your right their aren't enough pieces in the current puzzle icon, it needs more. As time goes on and more knowledge has been gained about autism, it has become that much more complicated of an issue to understand. Autistic behavior coincides with many other diagnoses that effect the behavior judged as autistic.

All that makes a diagnosis, is a professional's judgement; a person may have many different diagnoses, that all synergetically influence each other, there only as good as the doctors that make them.

Down syndrome, 22q11 deletion syndrome, fragile X syndrome, are all syndromes that have a strong association among individuals that are co-diagnosed with autism. But again, autism as it exists today is a collection of behaviors, if people meet that collection of criteria psychologists have created they get the diagnosis, regardless of whether of what genetic influence or environmental factor actually contributes to the behaviors considered autistic.

There really is no way to fix that part without a definitive physiological medical test. Research organizations are trying to provide that type of clarity, but it's looking less like a potential reality as time goes on and potential factors that cause autism become more diverse. They may specifically identify some causes of autism that can be measured objectively, but a definitive cause for all cases, looks out of reach at this point.

ahogday wrote:

I think this is true but it is a sad truth, the Autism label should be there to denote something that is actually present in the individual concerned, without this, it is a nothing more than a label stamped on an individual who exhibits a certain set of behavoiral traits. This then leads to the problem that individuals with this label may exhibit these behavoiral traits for different reasons, and may be fundamentally neurologically dissimilar to each other.

This makes all treatments and services aimed generally at Autistic people worthless, as they are really totally different from each other and have different issues and needs, they simply share the same label.

With the new DSMV criteria, all that autism is, is a group of behavioral traits; some sensory integration problems can result from prolonged stress, as nearly all of the behavioral traits associated with autism in the DSMV. The key I guess, is that the behaviors must be present from an early age, although people get diagnosed as adults, so that's only as good as oral history.

There is a number of treatments and services aimed generally at autistic people, as there are a number of depression treatments aimed at individuals that are depressed. That's a problem throughout the assortment of psychological labels, and in the entire field of medicine, it's always a search to find what may help one individual and what to avoid that may cause distress to another individual.

It's clear that autism varies from individual to individual, but the issues with treatments and services is similiar among other labeled disorders, particularly those related to psychological issues.

The only hope of clarifying this issue was through biomedical research. Without identifiable biological causes that can be tested, there is no clear model to diagnose. The most effective treatments and diagnoses available associated with most disorders, comes when underlying causes are identified.

Maybe you can see the importance in this, some can't, but there are conditions associated with autism, that do need medical attention, that are becoming better understood through biomedical research. Not everyone diagnosed on the spectrum has them, so any available treatments now or in the future to address the conditions will never apply as a treatment for all autistic individuals.

The treatments, therapies, and services available for autistic people don't always work for any one individual, but they aren't worthless, anymore than the treatments available for psychological disorders, that don't have clear root causes.

As an example, some people believe that all depression medications are worthless, however research proves they help some people more than the placebo effect, so they aren't without scientific merit. Cognitive behavioral therapy works for some, not for others. It's a bit scary when you think about it, we aren't quite kicking the computer to resolve some issues, but in effect we come close to using this method in some instances.

The medical issues associated with some autism diagnoses won't be ignored, so the research continues. Meanwhile concise diagnosis is becoming more generalized as time goes on.

That is potentially though, a good thing, for those that are concerned at this point that individuals with Aspergers are ignored in receiving services available to those currently that have a specific diagnosis of Autism Disorder.

Lots of pros and cons to consider, and no clear answers. All the efforts are worthwhile, though, it's hard to say what it will be that provides clearer answers and diagnoses, in the future. Without research, nothing likely will significantly change in the future regarding diagnosis or treatments.

I think that you make a good point that the further generalisation of the diagnostic criteria has the advantage that people with Aspergers may be able to access services more easily. But like you say, there are cons as well as pros. If Autism could be more specifically conceptually defined, and the many other conditions that frequently occur with Autism could be also, then the services could be much more useful and cost-effective. And it would help the Autistic community become stronger due to it's enhanced self-awareness.

But I am not sure that searching for the "cause" of Autism is the way to solve this dilemma. In my opinion you can think of Autism in two different ways, one is that it is a disabillity label given according to the exhibition of a set of behavoiral traits. Or that it is a word that describes a certain personality type. (This is my opinion, I don't think that Autism is a "disorder" or a "disease") To speak of a singular "cause" of a disabillity label, or a singular "cause" of a personality type, is an error and ammounts to chasing shadows.

I think that it would be better to try and define Autism as a psychological type with no singular "cause." Behavoirism when applied to Autism is of no use for this purpose. Genetic research has it's uses, but not in determining a singular "cause," only to discover what the building blocks are that help to create Autistc people.

That's interesting. Psychological types aren't disorders, for example individuals on personality tests that are introverted or extroverted. Only problem with that, is if there was no diagnosis available, educatioal support or financial assistance would not be available to those who experience autism as a disabling condition.

Even with a psychological type, behavior is considered to be a variable. For instance an introverted person tends to present shy behavior as opposed to the outgoing behavior of an introvert. No need to go to a psychiatrist for an analysis over introversion.

I think that some people don't experience autism as a disorder, that part is clear. For those individuals it is usually co-ocurring medical conditions that cause them problems like anxiety, or depression.

On the other hand, there are some children and adults that definitely experience autism as a disorder. If you've spent any time working with them, as I have in the past, that part is clear, no question about it.

Some wouldn't survive in life with out a diagnosis that is based on behavior, because of the necessity of financial support from the government based on that diagnosis, sometimes required for a lifetime. There is no other answer for them, at this point in time.

The simplest solution is if one experiences it only as a personality difference, is no diagnosis. In fact if it doesn't impair an important area of functioning in life, one doesn't get diagnosed, if they are properly diagnosed.

It is evident that many go this route already. They self-diagnose based on tests easily found online and personal assessment. If it doesn't impact an important area of life functioning it's a waste of time to go to the psychiatrist, because it's not likely one would receive a professional diagnosis anyway.

ahogday wrote:

Yes personality types aren't disorders, but that dosen't mean that there will be no diagnosis available. Minority personality types or psychological types are at a disadvantage in the world, because we live in a world full of NT's, run by NT's, for NT's. One example out of a million of disabling effects of this situation, is that the teaching methods of mainstream schools don't work as well on Autistic people, because we process information differently. (So we don't have the same access to education as do NT's.) But it is the interaction affect between the minority neurotype and the rest of society that creates the disabillity. An Aspie on his own in front of a computer isn't disabled, put him in a room full of NT's and expect him to make small talk and then he becomes disabled.

If society understands that Autism is simply a minority neurotype, but accepts that an individual that is of a minority neurotype will experience barriers and disadvantages, then they should still have access to diagnosis and support. I certainly accept that many people do experience Autism as a disorder, but there are several problems with this. One is that as Gedrene has pointed out, people tend to take what are complex and varied issues that an individual may face, and shove them under the umbrella of "Autism," but is it really just Autism? Or is it Autism + brain damage? or Autism + something else?

Another problem is the fact that the interraction effect between a minority neurotype and the rest of society creates stress and trauma for the minority concerned. This then manifests itself in co-morbid conditions like insomnia or an anxiety disorder, or others that don't have a name. But to look at these co-morbid symptoms and say "see, Autism is a disorder, look at how these people are suffering" is poor practise. The person saying this isn't distinguishing properly between a coping mechanism and an Autistic trait.

If someones everyday life is not impacted by their condition, then they don't really have a condition as far as I'm concerned. But it is not always easy to see how a person is impacted by their condition. I'm sorry to say that NT's don't seem to have the first clue that I'm suffering until I'm having an angry meltdown.

NT's diagnosing Autistic people on the basis of observing our extremely obvious behavoiral traits, with their awful abillity to read us. And then classifying all these "troublesome" behavoiral traits as just Autism. Followed by throwing some money at them and more money after finding a "cure" is a pile of pathetic garbage. You only have to look at the threads on The Haven to see how well this is working.

The status quo may be the only practisable thing in the current state of affairs. But I hope that one day we can burn all these imbecile books written by NT's about us, and try and figure out who and what we are ourselves as a community. We are already seeing Autistic people go in this direction with self-diagnosing, talking about having their own country, creating their own language and Autistc-led institutions beginning to tap into the support arena for Autistic people. So we are heading in the right direction, I just wish we could make faster progress

Researching a cause is actually providing evidence that every case of autism may be slightly different:

http://biologyfiles.fieldofscience.com/2011/10/copy-number-variation-and-autism-hotter.html



The hope to find a definitive single cause, is history as far as I can see. But, the research has provided some evidence of how much diversity there is among autistic people. That's a good thing because, perhaps through further research they may find associations between certain autistic individuals and certain genetic relationships that identify certain needs. Although, that is a long way off in the future.

There are some people with autism that require special education services, and some that make perfect grades in school, and only have problems with social interaction.

Computers makes it more convenient to communicate, if one finds face to face interaction difficult, however it's not likely that they make face to face interaction any easier. It's something that takes alot of practice, if one is not comfortable with it.

Computers are a new phenomenon, it is likely that just as many people with autistic traits existed before computers came along, and many of the ones that used computers as an adaptation found other ways to adapt before.

There have always been vocations that didn't require a great deal of communication skills, whether it was collecting berries, plowing the fields, or book keeping.

I like numbers, if you notice at any given time there are about 1400 people online here on this site, checking it out, and about 20 people participating in the discussion. 5 or 6 at AFF out of 30 or 40 online.

Some of us find amiable conversation, but as part of the condition, many of us have extremely rigid views, that we find difficulty in finding compromise in.

Millions of autistic people are diagnosed in the developed world; many more not diagnosed.

Realistically the autistic community, which exists almost entirely online, discussing these issues of a new autistic language or country represents at most 1000 autistic individuals out of a million. That estimate would be over the course of a year. When actually discussed, a handful of people.

It's easy to come up with a ball park figure. The record of posts has remained here since the beginning.

There are enough people to do it in the entire developed world, but not enough people actually in contact to do it. AFF is been in existence since 2004 and so has World Planet. The numbers of members have accumulated over the years as people pass through but the number of people actually communicating with each other has stayed relatively static from the beginning.

20 people out of 1500 online is about 1.5 percent of the people online. Out of the 20 some don't have autism, a limited few come here pretending to have autism, and others have other conditions. The variety of individuals welcomed when one registers.

In society not being able or taking the time to do small talk, is not that unusual. There are alot of quiet people out there that are introverted.

The 8 year old kids that are counted in the government statistics for autism, for the most part have developmental disabilities, in special education classes; their problems considered disabling are well beyond issues with small talk.

Chances are many of the people actually participating in these discussions have never even been included in autism statistics, because they were not part of the demographic measured.

This is pretty long winded, sorry for that, but the point I am trying to get at is the autism that is talked about in the online community is probably not rare, but in the sense of who is identified as such by others like them, diagnosed, or even know what autism is and they might have it, is very rare.

The potential population for the new language the new country, the new way of thinking about autism, is equivalent to a couple of ants in a football field, coming across each other by chance.

Bottom line is at least in this point in time, there isn't any realistic potential for this to happen, just because of the reality of the numbers, and potential of actual contact among individuals.

Those that are diagnosed are spread out into the entire world, separated from each other like the two ants in the football field. Close to 100 come together in events like autscape and autreat that are highly advertised that represent entire countries like the US with over a million autistic people.

The event is established, and the numbers of participants aren't significantly increasing over the years, nor are the number of people in discussions online, that we speak of as the autistic community.

So while 20 of us may be discussing things of interest to us here, at any given time there may be 2 or 3 discussing political issues related to autism, in an attempt to come up with solutions for millions of other individuals, whose needs are attempted to be met by society in large.

While we can give our input to those individuals that are providing support, realistically speaking, because of statistical data, we don't have the numbers to exert actual control over anything other than ourselves, a few associated individuals, and the kind of constructive input, like ASAN organizes to influence disability rights.

The biggest problem at this point in time in society accepting a minority neurotype, is the complexity of autism. Autism is many different things, but the reason people don't see it as just a neurotype of difference, is that the people measured to have it by the government are those that do experience it as a disabling condition because of developmental disabilities associated with autism. That is what is reflected in the mainstream media by most sources.

Research suggests that thirty percent of the population has at least some traits associated with autism. Likely 30 percent of the population isn't particularly good at small talk, but that doesn't cause them significant impairment in life.

People don't wear their diagnoses labels as tags to identify themselves, many haven't been identified as autistic, or have any idea they are autistic, so it's also kind of unrealistic for society to really ever be expected to automatically identify us and accommodate us, when so many of us don't even know that we are that much different than anyone else.

An autistic country, An autistic language, A world where everyone understands minority neurotypes and how to accommodate them, is a good thought, but not adaptations that are likely to come to fruition, because at this point we don't have a method of interaction to provide effective results.

Realistically we have to take ownership of autism, and provide the understanding to others of what it is we need in life to adapt on a case by case basis. All autistic people are different with slightly different needs, each of us can only really speak to the needs that we have as individuals and talk about them with others.

We have the Americans with Disabilities Act in the US to protect us in the workplace, but from what I've seen more people are afraid to take advantage of it than hope that they will gain enforced accommodation with it.

Those that are trying to help us can't possibly ever understand what it is that everyone needs as far as support and assistance on their own, but if they didn't try many people would be having more problems than they are having now.

It seems like for the most part we have to fend for ourselves, find adaptations that work for us as individuals, and hope that there are good decent people in the world that accept the fact that we need different accomodations than they do to make it in life.

In my life I found this to work well enough, however the world I grew up in, is much different than the world that exists today. It was much slower and easier to adapt to. It was evident that people as a whole cared about each other more than they do now, too. Beyond that there is scientific evidence that supports it is true.

The last part is probably key, when people don't care much about what happens to others, it makes it that much more of a problem, when someone needs accommodations in life, regardless of the law, are efforts that are made to try to improve it.

It's not hopeless. There are effective things we can do. Because of our numbers, some of the efforts by ASAN are good because they have actual contact with people that can influence somethings of benefit to autistic people, like improved residential care laws.

We can use our voices to give constructive input, for the changes we need to the organizations that have the influence and power to make those changes, whether it is the government, foundations, or local community organizations.

We really don't have the numbers to make it happen without the help of those organizations that have the influence and power to make it happen.

Finally, everyone needs something different to make their lives successful, we can identify realistic expectations, support them with whatever facts we have, and present them to the organizations, we see fit, to attempt to influence.

If we only talk among ourselves and the ideas never see the light of day, in those resources that can bring the ideas to fruition, progress is almost impossible, at least at this point.

After reading your last post I am beginning to realise that we don't really disagree that much. I am glad that you believe that we need to take the ownership of Autism. But I think that you are focused on the practical here-and-now, whereas I was focusing on the theoretical long-term situation.

I don't think that something like an Autistic country will ever exist, nor am I even sure that I would want it to exist. I was simply making the point that our "consciousness" was moving in the right direction and we are forming our own identity. But you think that the numbers of people participating in such discussions hasn't really increased, and you may be right I don't know.

But I think that if we were able to define Autism, clearly as something that exists "within" us. Then all our lives really improve, and I think that only Autistic people are capable of achieving this, however it is achieved. Thankyou for your excellent and comprehensive replies ahogday, and for putting up with my rantings

P.S. I'm sorry about butchering the thread, others please ignore me and comment on the poster.

No problem, enjoyed the conversation, learning as I go, trying to make sense of everything. I like statistics and numbers so I naturally tend to study them and gravitate to them, when they stand out.

From my own personal experience autism has never been exactly one thing for me my entire life, that I could really fully describe from my own perspective; to be honest it was clearer to me when I was completely lost in it, but I was so completely focused in my activities, I never really even thought about my identity, if that makes any sense.

In fact it seems like the world around me was more me, than me if that makes any sense, also.

My mother isn't autistic or my wife, I have come to realize that their brains work much differently than mine does. When I was lost in my autism, I had no idea, didn't even cross my mind. I also came to the realization of how many times in my life I thought someone else had a problem, but it was me that was causing the problem, unwittingly.

It was more natural for me when I didn't understand it, and just moved with the autistic flow. I don't have that flow anymore, but my description of autism, is like living in a dream that one controls, through extremely complex systematic methods to keep one moving forward. As long as a system is found a direction is present.

Other people don't need the same structure of life, I personally think it is because in some of our minds we lack the same emotions along with the same cognitive understanding, that provides clear motivation to most people in life.

Our way of keeping ourselves going could be the most distinct difference. That's just my perspective though, and it took me close to 50 years to figure out that was the main part that separated me from some others.

When my methods failed, fueled mostly by stress and adrenaline, the psychiatrist asked me okay you need to get in touch with your emotions instead of adrenaline to motivate yourself.

To that point, I had no idea it was the natural process that most people used in life for their decisions. I could hardly focus unless I had the adrenaline of a workout coursing through my veins.

My adrenaline is exhausted, and I can no longer keep up the pace that kept me focused. The psychiatrist might as well of asked me to move a mountain, adrenaline was all I really understood to motivate myself.

Most of my life I had alexithymia (not understanding one's emotions), sometimes it was worse than others; about 85 percent of people with Aspergers have it.

Given that condition the pathways in life are much more difficult, than for one that does not deal with it. There is speculation that it is partly biological in origin among some autistic people. If that were proved it might be called a symptom rather than a co-morbid condition associated with autism.

There is much more to this that is much more complex, that I don't think I could ever hope to explain. I understand much better now, though, that people that don't experience autism could never truly understand the way our minds work, nor could some of us ever understand the way other people's mind work.

When I was in middle school, I blamed the world, but now I do truly know that no one owns my autism or is responsible for it, except for me. I try to respect everyone else now, no matter how different I might think they are, given that understanding.

It was so complex for me to figure it out for myself, that I could never possibly hope to understand how someone elses mind might work.

Given all that I just said, I long for the days that I was lost in my autism, and had my own adaptations that worked for me. Comparably speaking it was like heaven for me.

For me the look in the eye of the young girl with Autism, is the dream world of autism. A wonderful place to be as long as the dream is good.