You are being BAPpy! A population 10 times larger than AS

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It is fun finding similarities in other people. But somebody does not have Asperger's just because they look like "us", or act odd or have a constalation of traits of Apserger's. We need to improve in our discussions by understanding the complexity of Asperger's (AS), as a diagnosis, as a complex set of spectrums of behavioral traits, and as phenotypes and genotypes. We have about 10 times more people with Asperger's than with Autism, and we have about 10 times more people with Broader Autism Phenotype (BAP) than with Aspergers. Think about those numbers. 10 times something (a degree of magnitude) makes a big difference when you are identifying characteristics for group membership. When we identify ourselves or people in videos as "having Apserger's", we are really noticing BAPs. People with BAPs may or may not have significant trouble with getting and keeping a job, starting and maintaining friendships and marriages, or planning. People with BAPs may or may not have had delayed speech development. However, they may still benefit from effective interventions and communities designed for people on the spectrum, if they have something in their personality that they want to change. It is spectral, after all!

Reference:
* Rate of Autism [ASD with significant language delay], is about 4/10,000.
* Rate of Asperger's Syndrome [ASD without significant language delay] is about 4/1000.
* Rate of BAP (not considered ASD) is about 4/100.
* ASD is Autistic Spectrum Disorder, which includes Autism and Asperger's Syndrome, announced to be in the next DSM by APA).
* BAP is Broader Autism Phenotype (genetic expression). It is characterized by preference to solitary pursuits, careers like scientist, engineer, accountant, social awkwardness, difficulty with words that have multiple definitions, literal thinking, oddness, idiosyncraticity, difficulty with fine or gross motor control (not good at writing or sports)-pretty much all the characteristics of AS, perhaps in milder form. The main thing that differentiates it from AS is a lack of significant problems in society, in getting and keeping a job, advancing in a career, marrying and maintaining a relationship.
* Autism, AS, and BAP are far more common in families of somebody with autism than in the population.
* BAP is almost always found in families of a person with AS, particularly in both parents.

Source: Klin, A, Volkmar, F, & Sparrow, S., eds. (2000). Asperger's Syndrome. Ch 5. Guilliford. NY. Accessed 2010-12-19 from < PDF is available online, but I cannot post it, yet>

Here is a convenient Google Scholar Search for "Broader Autism Phenotype": <Just go to Google Scholar and search: I cannot post URLs, yet>

Last edited by davidjess on 26 Dec 2010, 1:33 pm, edited 6 times in total.

That's a good idea and it might also be a good idea to get some general numbers to compare each of the individual PDDs on the Autism Spectrum.

i could see it in my family tree. i certainly ran into such when i was working for uncle sam.

What a polarizing issue.

No. No, no, no, no. That is a bad idea because people like to tell clearly autistic people that they're not really autistic, they're AS, and by AS they mean you have no right to say anything at all about autism, and possibly that you're a faker. Now we're going to let them say "you're really BAP" instead? I want everyone who's autistic to be called autistic. Period. Regardless of impairment. Everyone who's gay is gay regardless of impairment; everyone who has a tumor has a tumor even if it's not going to kill them or do anything; everyone who has joint hypermobility has joint hypermobility even if it's never caused them any trouble; my neurology would be no different if I somehow found myself in a world populated by very understanding autistics, where all of my deficits were considered normal and planned for. THIS IS JUST STUPID, it keeps people from talking about what we all have in common because they refuse to let us use the same words for the same thing based on stupid, irrelevant distinctions like whether or not you had a speech delay.

I think that you bring up a really good point. A lot of the literature and community communications use the term "on the spectrum". I think that that would be a good term in general for people who participate in the community. It is kind of like being "colored" in the NAACP. Everybody is colored.

I would not use a general term like "autism" or "BAPs" as a way to exclude people from being considered having "ASD" or "AS". If they say they have it, then I would tend to believe them. And I would NEVER tell somebody that they do or do not have them. Looking at a famous person, a person in a video, or an author, or a friend or family member, and saying "He has it", or "She does not have it" should just stop. On this I think you and I are agreeing. We should say that they are "on the spectrum", and let them sort it out for themselves, or we should say that we recognize particular BAPs, or characteristics of autism in them.

What I was trying to do, I guess, is reserve the technical diagnoses terms for people who have been diagnosed. Although usually we will not know who they are, we can refer to "people with ASD", people with "AS". Or somebody could disclose their diagnosis. In science and public health, it is CRITICAL that precise definitions are made. And we need scientists to refine the categories to a much greater degree and get clear criteria so that one group does not mix with another in doing analyses and looking for underlying truths (such as causes and effects). However, for personal health, diagnoses are much less important: Here what is important is recognizing individual strengths and weaknesses, and getting effective support where needed (Klin et al, 2000).

I can see the term "autism" being used as you say. Then to refer to a diagnosis we would say "Diagnosed with autism", or use terms like "AD" (Autistic Disorder), "ASD" (Austism Spectrum Disorder) and "AS" (Asperger's Syndrome). Yeah, I am actually seeing that. But it might have one drawback in that it could confuse the public even more if they do not understand that the terms map onto other terms (Autism maps onto AD, ASD, AS, and BAPs). The term "Asperger's" could be used since it is being discontinued in the DSM-V. However, it is used a lot in scientific literature and so that could also confuse the public. For these reasons, "BAP" might end up being really useful, at least when the general term, autism, is broken down into these components to map the community and support discussions onto the medical and journalistic discussions that are often based upon medical journals.

Source: Klin, A, Volkmar, F, & Sparrow, S., eds. (2000). Asperger's Syndrome. Guilliford. NY. Accessed 2010-12-19 from < PDF available online, but I cannot post it, yet.>

Heres an article on it if any1s interested: http://autism.lovetoknow.com/Broader_Autism_Phenotype

Personally, Ive never heard of this, I think this somewhat explains why many some aspies on here claim to have lots of friends undiagnosed on the spectrum just cause they show aspie like behaviors. I'm seriously thinking: how the hell do u guys find so many aspie friends? Well, they aint aspie they maybe BAP(if it exists). I think, this explains my friend who seemed to display some aspielike traits but is not on the spectrum.

I see your point, I just think BAP would be a more technical way of categorizing autistic characteristics rather than labeling people as aspies. But I definitely prefer the label "autistic" and wish all autism spectrum disorders were under the umbrella term of "autism spectrum disorders" rather than "PDDs" as it is now. Totally screwed up what my technical diagnosis is .
Also, I have friends who have noticed and caused issues with the "faking it" concept because out of my friend circle, we have one guy and 5 girls including myself on the spectrum (which I still find shocking). Diagnoses range from asperger's and other autism spectrum disorders (I was labeled PDD at 18 months so I'd say I'm technically HFA but probably could count as autism or PDDNOS but appear to be an aspie). They tend to come to me about issues with thinking some people are "faking". The reason they think 1-2 of our friends are "faking" is they are older than me, have regressed since starting college, have no sensory issues or noticeable symptoms beyond immaturity and generally acting inappropriately in ways they CAN control if they CHOSE to do so. The fact they whine about their condition but make NO EFFORT to try and work on their issues & in effect USE THEIR CONDITION AS A CRUTCH is what pisses me off and is why I can't entirely blame my friend for suspecting that some of them are "faking it".

It is technically and scientifically more accurate, so the idea appeals to me on that level. Yet, at the same time, are we not just replacing one word with another word that means the exact same thing to most people that hear it..."A rose by any other name". Aren't there already people ranging from the very successful to the severely disabled that identify themselves as aspies and talk about "aspieness". I certainly have seen diagnosed persons on this board that have a job and family. If that is to be the discriminating point, wouldn't that be at odds with the present reality, where whether you're technically aspie or BAP, there are varying degrees of how much you like to socialize and how skilled you are at it. In this case, by differentiating based on something "job, relationship" that may have nothing to do a person's actual medical status, aren't we just muddying the waters and being needlessly confusing.

All the forum talk on "faking" reminds me of the long history of issues with African American communities. Outsiders said to somebody, "You ARE African American". Insiders said you are faking it, or you are not really like us or you are not supporting us or you are selling out or you are "whitening" yourself or you are not black enough. I never thought that anybody was qualified to make these judgments about whether somebody is African American or is not, lacking clear criteria and professional measurement (which in general does not exist because so far it has been impossible). The NAACP today uses a criteria for membership that I really like: A human being who believes in supporting people of "color", which includes everybody regardless of personal characteristics. I think we had better use something like that for inclusion in autism communities, because only a team of doctors can make a valid diagnosis, and even they disagree.

Think about this also: If somebody is having substantial life problems, and they have BAPs, why should they not be included? If they were not having life problems, and if they did not have BAPs, then why would they be interested, anyway? Most would not be. Except for the social benefits. But seriously, what social benefits would a neurotypical person usually be able to get from a group of people with autism? I say the best way to handle this is to include whoever is motivated to be included. Everybody then is on the spectrum--at least that is one way of modeling it--whether diagnosed or not, whether disabled or not, whether they have a syndrome or not, even if they are just supporters or people with autism, particularly if they, themselves, think they are.

Peko, I agree with your idea. Refining the categories and frequencies is on the science side. But then science eventually becomes the basis for all our other discussions. The "media" will constantly get this all wrong. But they try and they try and they try to get it right within their time limits and objectives. We have science, where precise definitions are critical. We have the media, where we need, I would say, broad definitions that are accurate at the level they are communicated (broad, and to the public), and we have communities of autistic people. We should have some kind of scientific basis in what we tell people whenever possible, but not cross the science with the community discussion in inappropriate ways, such as in trying to diagnose or categorize other people. It would be better to practice inclusion and support of all people in the community.

I am starting to like the idea of soft disclosure, and a related idea, soft observation. A diagnosis is nobody's business except to the extent that the person discloses. If somebody in our community discloses that they are diagnosed with AD, AS, ASD, or anything else, then there is nothing for us to do but accept that it is true. We do not have "liars" in our community because we do not have any way to validate a lie or truth at that level (we do not have teams of diagnosticians). A person can be in our community without disclosing any autism at all. They are simply with us and a part of us. Any discloure at all is a soft disclosure in a way, because it is not backed up with documentation. Other soft disclosures: I am a nerd, I have a MBTI personality type of INTJ/P, I am good at detail work, I am exploring an autism support group to see if it will help me. Or, somebody could disclose a broader diagnosis than what they actually have. For example, somebody with Austistic Disorder (AD) could disclose that they have ASD (Autism Spectrum Disorder), or AS (Asperger's Syndrome), or simply that they are "on the spectrum". To me, it is not a lie, because it is simply not disclosing late language development while disclosing the rest. Of course, they can disclose more specifically, as well, depending upon the context and their purpose.

But here is my new idea. BAPs could be really useful for soft disclosure. I could, for example, disclose to my employer or close friend that I have some BAPs, explain what they are, and what sort of support I need, without getting into the details of my specific diagnosis. If I am undiagnosed, I could use BAPs as an entry point, even for myself. It could also be useful for talking about other people, famous, intimate, or in discussion groups published to the Internet. I cannot tell you that you have or do not have AD, AS, ASD, or anything else on the spectrum without being ridiculous (I am not a hired team of diagnosticians). But I could tell you that I notice BAPs in you, just like I can observe that your hair is brown or your eyes seem hazel. At least that seems more reasonable to me.

BAPs could also be useful for some special interest stories and news items that convey a "first impression" of autism to certain members of their audience. I think that professional news organizations could eventually understand and convey this kind of spectrum information fairly well. They could present BAPs, and then interview somebody with a specific diagnosis and explain how it fits in. They would thus convey both the broad concept to avoid mis-information, along with the detailed Who, What, Where, When, Why, and How, of the hook or detailed story, as appropriate.

Last edited by davidjess on 26 Dec 2010, 3:55 pm, edited 7 times in total.

Thank you for posting a specific article. I had a similar experience to yours. I found Aspie-like behaviors in the majority of my family members and a good tenth of my friends, yet I knew that AD and AS (or, combined, ASD), account for roughly 1% of the population (same source as the topic starter message). Like you, I asked, could autism be THAT concentrated in one family (genetically and environmentally), or in one school (how?), or in a friendship group (through mutual attraction)? (If one family had a 10% rate of ASD, then 10 families with a rate of 0.1% would balance the average out to 1%). That is how I researched and found out about BAPs. Now I think that SOME of my family members may be diagnosable with Ds (disabilities or disorders), but not 50% of them. The numbers in a public school are probably the same as in the general public. People with BAPs but not AD or AS may still sometimes have limited autistic concerns (like, how can I better recognize people's feelings). Now it all makes more sense.

If your friends display specific Aspie-like traits (BAPs, perhaps?), then why do we not say that they ARE on the spectrum? The spectrum of colors, after all, does include all colors.