Talk:Autism

See also: Wikipedia:Notice board for autism-related topics

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Regarding Austism in Girls

• New York Times: What Autistic Girls Are Made Of Excellent review of applicable statistics and research and illustrative profiles of several autistic girls detailing their social interactions

I added this exceptional resource about autistic girls, particularly the high functioning - someone may want to build this into a sub-section of its own. Kiwi 18:40, 4 August 2007 (UTC)

I've formatted the entry and removed the editorializing. Perhaps Eubulides has journal-published research on the topic to avoid including a popular press link in the article. SandyGeorgia (Talk) 20:43, 4 August 2007 (UTC)

Though I formatted it to match, people don't seem too enthusiastic about this link appearing on Asperger syndrome either. Checking it out, my feeling is that it is a valid suggestion for a sub topic, well worth exploring, but a popular press article that will require registration next week (when it is no longer current) is probably the kind of link that should be avoided in accord with WP:EL? --Zeraeph 22:39, 4 August 2007 (UTC)

Correct; anything worth including will hopefully be covered in the peer-reviewed literature. SandyGeorgia (Talk) 22:50, 4 August 2007 (UTC)

Absolutely ridiculous. It's The New York Times. Anyone with access to a library has access to the material, and the external link will give access to the date, byline, title, and abstract, which is enough to look it up. Nandesuka 16:35, 5 August 2007 (UTC)

I would like to point out that I did NOT use this or suggest the use of this article as something to be used as a source for this topic, but because it focuses on the minority Autism/Asperger population that are female. It is not meant to suggest that every last word is gold-plated and foot-noted, only, as I said, that it used experts and research to substantiate what was written. I offered it as a source of what is currently known or theorized.

Usually articles of this type are not hidden from public view at the Times for many many months, though this being featured in the Sunday Magazine rather than within the Science section, it may not follow form...

Regardless, I include, below, a few explicit factual excerpts and the names of studies and research centers that would help people find other sources for the article. THIS is what this article is important for - that someone wrote on this splinter topic and went through so many interviews with autism/asperger research experts to do so.....

"According to The Centers for Disease Control, there are about 560,000 people under the age of 21 with autism in the United States. (Adults aren’t included because there is no good data on their numbers.) If 1 in 4 are female, the girls number about 140,000. The C.D.C. estimates that about 42 percent of them are of normal intelligence, putting their total at roughly 58,000 (with the caveat that these numbers are, at best, estimates).

Because there are so many fewer females with autism, they are “research orphans,” as Ami Klin, a psychology and psychiatry professor who directs Yale’s autism program, puts it. Scientists have tended to cull girls from studies because it is difficult to find sufficiently large numbers of them. Some of the drugs, for example, commonly used to treat symptoms of autism like anxiety and hyperactivity have rarely been tested on autistic girls.

The scant data make it impossible to draw firm conclusions about why their numbers are small and how autistic girls and boys with normal intelligence may differ. But a few researchers are trying to establish whether and how the disorder may vary by sex. This research and the observations of some clinicians who work with autistic girls suggest that because of biology and experience, and the interaction between the two, autism may express itself differently in girls. And that may have implications for their well-being.

The typical image of the autistic child is a boy who is lost in his own world and indifferent to other people. It is hard to generalize about autistic kids, boys or girls, but some clinicians who work with high-functioning autistic children say they often see girls who care a great deal about what their peers think. These girls want to connect with people outside their families, says Janet Lainhart, a professor of psychiatry and pediatrics at the University of Utah." But often they can’t. Lainhart says that this thwarted desire may trigger severe anxiety and depression."

personal comment - I found this (and other) description to strike home with me so hard that I am still reeling at how well it describes me. Additioanlly, mild to severe learning disabilities and verbal/emtional developmental delays litter my family --- My grandson is high-functioning autistic, my nephew has Asperger's, my young daughter with severe problems.

"This gender dynamic doesn’t necessarily affect girls with Asperger’s when they are very young; if anything, they often fare better than boys at an early age because they tend to be less disruptive. In 1993, Catherine Lord, a veteran autism researcher, published a study of 21 boys and 21 girls. She found that when the children were between the ages of 3 and 5, parents more frequently described the girls as imitating typical kids and seeking out social contacts. Yet by age 10, none of the girls had reciprocal friendships while some of the boys did. “The girls often have the potential to really develop relationships,’ says Lord, a psychology and psychiatry professor and director of the Autism and Communication Disorders Center at the University of Michigan. “But by middle school, a subset of them is literally dumbstruck by anxiety. (snip) Their behavior really doesn’t jibe with what’s expected of girls. And that makes their lives very hard.”"

"At the University of Texas Medical School, Katherine Loveland, a psychiatry professor, recently compared 700 autistic boys and 300 autistic girls and found that while the boys’ “abnormal communications” decreased as I.Q. scores rose, the girls’ did not. “Girls will have more trouble with social networks if they’re having greater difficulty with communication and language,” she says."

"In a new study published in May, a group of German researchers compared 23 high-functioning autistic girls with 23 high-functioning boys between the ages of 5 and 20, matching them for age, I.Q. and autism diagnosis. Parents reported more problems for girls involving peer relations, maturity, social independence and attention."

"The difficulty may continue into adulthood. While some men with Asperger’s marry and have families, women almost never do, psychiatrists observe. A 2004 study by two prominent British researchers, Michael Rutter and Patricia Howlin, followed 68 high-functioning autistics over more than two decades. The group included only seven women, too small a sample to reach solid conclusions about gender differences, Rutter and Howlin caution. But 15 men — 22 percent of the sample — rated “good” or “very good” for educational attainment, employment, relationships and independent living, while no women did. Two women rated “fair,” compared with 11 men, and the other five women were counted as “poor” or “very poor.”"

"Lainhart has been interested in the relationship between autism and depression. In a 1994 paper, Lainhart and John Hopkins researcher Susan Folstein pointed out that despite the 4-to-1 male-female ratio for autism, females made up half the autistic patients with mood disorders described in the medical literature."

"David Skuse, a psychiatry professor at the Institute of Child Health at University College London, has analyzed data from 1,000 children, 700 of them on the autistic spectrum. “Girls with autism are rarely fascinated with numbers and rarely have stores of arcane knowledge, and this is reflected in the interests of females in the general population,” Skuse explains. “The girls are strikingly different from the boys in this respect.”"

PS

The NYTimes.com was the VERY first place I ever registered on the web. Since they switched to certain content being subscription only, it is also the ONLY place on the web where I pay for content. As a registered user of the New York Times for 9 years, I can assure one and all that I have never once gotten so much as a single email from them. Since I became a "paying customer", the only times I hear from them is when my yearly subscription comes due.

To make this crystal clear -- I have presented NAMES, INSTITUTIONS, and even DATES OF RELEVANT RESEARCH so interested parties can FIND the "original peer-reviewed literature." Is that clear? This is a MAP, not the buried treasure where "x" marks the spot. :o) Kiwi 23:40, 4 August 2007 (UTC)

At the risk of repeating myself, I think it's a VERY good idea for a subtopic, and a great article as a discussion piece upon which to base that possibility. But let's not post it on the article? I guess it really isn't suitable? Particularly as it is only freely accessible for 6 more days. It would set a bad precedent we don't need. You obviously have LOADS of WP:RS with which to start a subtopic ANYWAY.--Zeraeph 00:06, 5 August 2007 (UTC)

Hi, Zeraeph. My apologies if you felt my comments were directed at you, for they were not. I must admit that I am not totally cognizant of what is a suitable outside link, and I apologize for any ignorance on my part. However, regarding the six days comment, I have, since my last post, found active links to articles about various unusual child mental health issues from a few years ago, still active and available without any cost.

None of the ones I rapidly browsed, though, had the vast amount of original research referenced as this one did, but other old good articles regarding other childhood mental illnesses that I have posted to support groups in the past are still active. Maybe mental health is an area the Times likes to keep available. PR stuff?

Anyway, did not want my comments to feel personally directed for they were not. I knew that I would have dozens in the next few days feel that I was trying to stuff a lot of half-baked opinion down the throats of this person or the next, so I wanted to spell out my original intent - which was as you yourself fully understood. I am glad that you see that this COULD be a valid subtopic and I truly hope someone with the time and interest finds my subtopic on these talk pages. Kiwi 00:29, 5 August 2007 (UTC)

Nothing to apologise for. It's a really good idea for a subtopic and a really good discussion piece. The trouble with popular journalism is that they sometimes say the dippiest things, even when it is otherwise a good article...for instance that article refers to "Classic Autism", as if bit were a recognised condition when it is, in fact a condition that doesn't actually exist! MUCH better to stick to peer reviewed sources... --Zeraeph 00:53, 5 August 2007 (UTC)

Not only does Bazelon refer to "classic autism", but she defines the term in a way that I've never seen before (she defines it to mean "autism with mental retardation"), and then she confuses "classic autism" with ASD. Bazelon's estimate of 140,000 U.S. girls with autism is derived by dividing an estimate of the number of U.S. children with ASD by a boy-to-girl ratio for "classic autism", which is an apples-and-oranges error: ASD male-to-female ratios differ from Autism male-to-female ratios which in turn differ from Bazelon-defined "classic autism" ratios. The topic is an important one but I'm afraid I wouldn't trust this piece on the technical details. Anyone who'd like to write this up (I suggest Sociological and cultural aspects of autism as a good home for the writeup) should go to the primary sources as well. I tracked some of them down:

• Bazelon alludes to PMID 8331044 and PMID 17489810 about sex differences in autism. Other recent research reports include doi:10.1177/1469004703074003 and doi:10.1007/s10803-006-0331-7, with results that don't always agree. As far as I know nobody has published a review in this area to try to make sense of the conflicting results.
• Bazelon writes about a recent study by Katherine Loveland comparing 700 autistic boys to 300 autistic girls. I couldn't find that study in either Pubmed or Loveland's institution's list of recent abstracts; perhaps it hasn't been published yet.
• Bazelon alludes to PMID 14982237, PMID 17630015, and PMID 7814308 as well. Autism cites the first one; Conditions comorbid to autism spectrum disorders cites the 2nd one; the last one (which is way older) isn't cited in Wikipedia as far as I know.
• Bazelon alludes to a study by Skuse with 1000 children. I wasn't able to identify this (perhaps it's not yet published either?) but I admit by this time I was getting tired of checking.

Eubulides 05:55, 5 August 2007 (UTC)

It is completely inappropriate for editors to be substituting their opinions for Bazelon's, even if they believe her opinion is wrong. Rather, find other reliable sources that criticize her argument. It is seems to me that the opposition to this link stems not from concerns about the need for registration, but to the substance of the article. Zeraeph, feel free to rewrite this from an external link into a paragraph with a proper reference. Simply removing it, however, is inappropriate. Nandesuka 16:39, 5 August 2007 (UTC)

Newspapers have long been considered a poor source for scientific and medical information on WP. See Wikipedia:Reliable sources/Examples and (under-development) WP:MEDRS. There are some who consider this the old NPOV vs Scientific POV, but it isn't. The POV might well be the same. It is a question of suitability as a source for an encyclopaedia. There is a long debate on Wikipedia talk:WikiProject Medicine/Reliable sources where a reasonable newspaper article "The Bell Curve" is analysed and IMO found wanting as a source for medical facts on WP.

Eubulides isn't substituting his opinions for Bazelons—he hasn't offered an opinion on the topic. He is merely pointing out a few flaws and pointing towards some further sources for research. The boy/girl ratio thing and the common newspaper technique of citing unpublished results both make me wary of this source.

Journalistic technique demands the author write an article with a point. Therefore, the journalist naturally chooses their sources and shapes their material to make that point. That doesn't tend to make a good source to write a NPOV encyclopaedic article. It may be that all of us here agree with Bazelon's point, I don't know.

On a more general note: Autism is one of the most poorly reported topics in newspapers. Certainly in the UK, I wouldn't trust them to spell the word. Even the normally reasonable Guardian/Observer disgraced itself recently. Colin°^Talk 18:00, 5 August 2007 (UTC)

Yes, I too was amazed at the July 8 Observer piece: its flaws were much, much worse than Bazelon's. The Observer initially defended the article (!) but to its credit eventually removed the article from its website and published a "clarification", and the Guardian published a scathing review by Ben Goldacre. Still, the Guardian messed up on the subject as recently as July 27, when a summary of the MMR vaccine controversy had a paragraph withdrawn after publication; I guess the reporter had borrowed a paragraph from the retracted July 8 Observer piece without knowing it was retracted. Ouch. Eubulides 06:44, 6 August 2007 (UTC)

Instead of removing the reference, I moved it to Sociological and cultural aspects of autism. That is a better home for it, as discussed above. As for the technical issues, Autism cites refereed-journal sources that disagree with Bazelon on some points (e.g., Newschaffer et al. 2007 on the male-to-female ratio for ASD, and Burgess & Gutstein 2007 on whether autistic boys prefer to be alone). The gender issues Bazelon raises are important ones and should be discussed, but Sociological and cultural aspects of autism is a better place for them. Eubulides 18:13, 5 August 2007 (UTC)

I removed the "See also" list incorrectly inserted into the top of a section: pls see WP:LAYOUT and {{seealso}}.[1] Also, Sociological and cultural aspects of autism is already linked. SandyGeorgia (Talk) 16:26, 6 August 2007 (UTC)

My apologies for the incorrect positioning and layout that caused you extra work. Actually, I could not find this particular topic that you saw detected already linked within the autism article. Even used my search page function. Kiwi 00:05, 7 August 2007 (UTC)

Do you not see the template at the bottom of the page that links every autism article? You've added the redundant link again. SandyGeorgia (Talk) 00:06, 7 August 2007 (UTC)

Well, Sandy, if I haven't seen everything now!! No, I was used to seeing templates where everything is listed, one thing above the other - and these set to the right up near the top of article --- But I had no idea these "open-close" things were available. After I look at "External links", I stop reading any further down the page for in the past, there has never been a darned thing down there in English besides the categories listing at the bottom of the page. When did they start using these? And why can't it be placed higher on the page where people would find it? You must have thought me a dunderhead, but I truly had not seen such a thing in my life and would not have conceived of looking for such a thing.

You have to give most of us non-editor types step by step instructions. I only dropped in because I read the article and recognized myself and finally understood myself. And I wanted to share. Kiwi 02:09, 7 August 2007 (UTC)

It's also linked in the lead, right here:

• Autism affects many parts of the brain, but how this occurs is poorly understood. Parents usually notice warning signs in the first year or two of their child's life. Early intervention may help children gain self-care and social skills, though only a very few of these interventions are supported by scientific studies; there is no cure. With severe autism independent living is unlikely, but with milder autism there are some success stories as adults, and an autistic culture has developed, with some seeking a cure and others believing that autism is simply another way of being.

Per WP:LAYOUT, articles that are already linked in the body are not also added to See also. SandyGeorgia (Talk) 00:08, 7 August 2007 (UTC)

Thanks, I fixed that by making the 2nd wikilink to Sociological and cultural aspects of autism more obvious. Eubulides 00:47, 7 August 2007 (UTC)

Eubulides, you are THE GREATEST!!! Now even a newcomer to this highly evolved complicated topic page can find it (and understand what it means much better than this vague "autistic culture" which I do not think begins to describe the two sub-topics now in development regarding how the radically different manifestations in girls and the often typical behaviors of aspies impact their sociological integration because of their inabilities to fulfil cultural norms and expectations. FABULOUS!! Hope to see more of you and thank you so much. :o) Kiwi 02:09, 7 August 2007 (UTC)

To write subtopic on autism/asperger in females

All the relevant beginning points are here - Talk:Sociological and cultural aspects of autism

On this page, there is also the list of 24 commonly found traits amongst the population of those with autism/Asperger. The list is also waiting to be prepared for insertion of the article page of the above topic. Kiwi 08:24, 6 August 2007 (UTC)

again, I wonder why the index/contents box has not appeared

This is, to me, a mystery - mainly since I don't know how to make one of them. Kiwi 08:37, 6 August 2007 (UTC)

I think I've figured out what you mean - the table of contents? That only appears by default when there are more than three sections on the page. There's more detail at the page I've linked. Graham87 11:44, 6 August 2007 (UTC)

I need to talk about the changing on the Autism article

My son had autism and attended early intervention and has gotten better from autism when he was 4 1/2 and is currently in 8th grade right now and he is high functioning. I also spoke to numerous P.H,D's about this so I am adding the right information on Autism and I am also upset that the infobox says that autism is a diease because it's not it's not a sickness that you can die from, it's a disorder. You could either have severe autism or autism that you could better from. There was a discover 30-years-ago that people can't get better from autism and most people still think that today. But it's not alway's true as I said earlier - through early interventions could help kid's gain self-care and social skills while other's with severe autism can't get better from it. Autism that is not severe is not named like short-term autism it sometimes is refered to Pervasive Development Disorder - None Others Specified (PDD-NOS). So can someone please add this updated information. Thanks! [2]

The only place the infobox says "disease" in the article is in the string "DiseasesDB", which is the name of a particular database about medical conditions and symptoms; it does not mean that autism is considered to be a disease. The Wiki input "Infobox_Disease" does not necessarily mean that the condition is a disease you can die from; it's just a template whose name is irrelevant to what appears on the reader's screen. That same template is used by hundreds of other articles, including Color blindness to Sunburn, which describe conditions that are not diseases; but it's not a problem since what appears on the user's screen doesn't say "disease" (other than perhaps "DiseasesDB"). The information that you requested is already in the article: early intervention, self-care and social skills in Autism #Treatment, people with severe autism unlikely to have independent lives in Autism #Prognosis, and PDD-NOS in Autism #Classification. Eubulides 01:06, 6 September 2007 (UTC)

Thanks! But, what about the part on the scientific studies 30 years ago and that people can't get better from it, which people still believe today, which is not true. —Preceding unsigned comment added by AnnieTigerChucky (talk • contribs) 14:20, 6 September 2007 (UTC)

I'm not aware of 30-year-old studies saying that people can't get better from autism. If someone can scare up the citations they might be a good thing to add to Autism #History. The mainstream consensus nowadays is that there is no cure but that early intervention can help, which I think is what you're trying to say. This point is made in Autism #Treatment and Autism #Prognosis as well as in the 3rd paragraph of the lead. Eubulides 16:00, 6 September 2007 (UTC)

There already IS an "Autistic culture" topic - since Spring 2006

I followed a link on the autism topic page and discovered this fact. Wikipedia:Notice_board_for_autism-related_topics#Autism-related_alerts And in reading the Autistic culture article, it is clear that topic is totally and completely about the community of support that has grown up around autistic culture. It is far different and not at all in harmony with the new topic, Sociological and cultural aspects of autism which is a sociology topic that deals with how the behavioral aspects of autism impacts sociological and cultural integration.

I hope that Autism topic and Asperger syndrome topic are now able to have an entry that indicates the scope of this new topic. It seems the original sentence that was switched from an Autistic culture link can be corrected. Then that sentence makes sense again. Kiwi 02:59, 7 August 2007 (UTC)

Autistic culture is mostly an unsourced essay, should probably be merged and deleted, and needs no link in this article, IMO. SandyGeorgia (Talk) 03:14, 7 August 2007 (UTC)

Oh, after getting down to Autistic culture#References, I certainly see the problems you are speaking of, Sandy. Five or more of the references are just to other autistic articles. I'm not too familiar with many of the issues, but looking at the Template you pointed out to me, I can see that many of these subtopics already have their own topics.

In that article, thought, I see a few sections that could definitely be imported into Sociological and cultural aspects of autism. Not everything, of course.

But I am uncertain that "History" Autism#History is the place to place a link to this new sociology topic that has nothing to do with history, but everything to do with the unavoidable human needs and drives that render difficult or impossible the autistic/Aspie individual the opportunity to sociologically integrate into the prevailing cultural milieu. This is what leads to most of the depression, loneliness, isolation and unemployability. Do you think the link to this new topic might be relocated to Prognosis Autism#Prognosis? Prognosis is only partially a medical issue. It is an issue every parent and every adult aspie has had to tussle out on their own. Often with dismal results.

I would be willing to identify what seem the most relevant portions of the current shaky Autistic culture topic before it gets nominated for deletion. It is possible Eubulides would be interested, too. What do you think about this? Kiwi 03:43, 7 August 2007 (UTC)

A bit of history first.

• A previous version of Autism did have a "Society and culture" section that referenced Sociological and cultural aspects of autism as its main article. However, a peer review rightly objected that the section was too short, so its material was folded into "History". "Society and culture" was too short because Sociological and cultural aspects of autism unfortunately does not yet have much to say that is useful for Autism, and is not that well sourced at what it does say. Sociological and cultural aspects of autism is better sourced and organized than Autistic culture, but I'm afraid that's not saying much.
• Going back even further in history, Sociological and cultural aspects of autism originally was a subsection of Autism that was intended to summarize Autistic culture. You can see it in an older version in a "Sociology" subsection. However, the society and culture of autism is a big subject and if done at all well would take up so much room that it would not fit in Autism. Seeing that, I broke the material out into a separate article, where it is awaiting further editing so that it can become high quality.
• Ideally we could find editors who understand this area, and who have the time to combine and edit the existing flawed Wikipedia material, along with new material, into good, well-sourced text in Sociological and cultural aspects of autism—I'm not asking for Featured Article quality, just Good Article—and who can then briefly summarize the result, so that we can put the summary into a revived subsection "Society and culture" of Autism. This proposal is nontrivial, but it is doable, and it would improve Autism; please see the high-quality Tourette syndrome #Cultural references for a model. As for how to proceed along these lines, I suspect the best way is to make Sociological and cultural aspects of autism as good as it can be first, without worrying too much about modifying Autistic culture; we can merge the two later if need be.

Eubulides 05:50, 7 August 2007 (UTC)

Eubulides, thank you so much for filling me in about what has, obviously, been a long and problematic evolution of all autistic related topics. On one side, I can certainly see the need for "autistic culture" in terms of being recognized not only as a group as human beings with rights, but also the adoption of what was/is a "medical (formally psychiatric) diagnosis" and and moulding it into a Positive Identity - a uniqueness that celebrates the differences" and educates "normal society" to full understanding and full acceptance. And I also understand the need of the recent origins of Sociological and cultural aspects of autism as these aspects are not exactly of the same "flavour" as that article is.

While I certainly do not have the background or knowledge to contribute to this article or to Asperger's, having lived as a female, child and now adult whom I recognize in this article and who I now recognize (in myself and in my nephew in college) in many of the items in the deleted list (which is why I migrated it).

To whatever limited extent I can help this new topic evolve, I will do so. Thank you again for taking the time to give me an introduction into a tremendously complicated and widely interconnected topic. Kiwi 21:37, 7 August 2007 (UTC)

Autism epidemiology

The recent edits to Autism made several nice changes, but I have some qualms about some of them:

• The following text was removed with the comment being only "removed untrue statement":

Autism's incidence, despite its advantages for assessing risk, is less useful in autism epidemiology, as the disorder starts long before it is diagnosed, and the gap between initiation and diagnosis is influenced by many factors unrelated to risk.

But this cites Newschaffer et al. 2007, a high-quality source. Here is a direct quote from that source:

The most commonly reported measures of autism frequency are point prevalence or period prevalence. Incidence rates, despite their theoretical advantages for studying risk, are of more limited utility in autism epidemiology because not only is autism diagnosis distal to disease initiation but also time between initiation and diagnosis is likely influenced by a wide range of other factors potentially unrelated to risk. Cumulative incidence, however, may be informative for descriptive epidemiologic studies of birth cohorts.

The point is an important one, so if the Autism statement doesn't reflect the source accurately, then let's fix it, not remove it. You can find a more discussion on this issue at Talk:Autism/History as of 2007 July 31 #usefulness of epidemiological statistics.

It is impossible to say in general whether one specific statistical measure is useful or not, it all depends on what purpose you use it for. In the context of that specific article, that deals mostly with causes and risk factors, incidence is less useful than prevalence indeed. But that does not justify including that sentence here. --WS 23:40, 9 August 2007 (UTC)

But the removed text says incidence "is less useful in autism epidemiology". That is, it talks about one particular purpose, not about whether the statistical measure is useful in general, so it addresses the "impossible to say" objection. And the removed text matches the wording of the cited source; Newschaffer et al. say that incident rates "are of more limited utility in autism epidemiology" without limiting their claim to causes and risk factors. So I still don't see why the text was removed. Do you disagree with Newschaffer et al.? or is it that you disagree with the removed paraphrase of their words? If the latter, what would be a more accurate paraphrase? Eubulides 05:10, 10 August 2007 (UTC)

For now I restored the sentence; we can fix its wording later (or remove it, if it really needs to be removed). Eubulides 05:42, 10 August 2007 (UTC)

• Prevalence estimates for related disorders were removed, using the argument that these statistics belong in Autism spectrum disorders. But these estimates are also useful here, to give readers a feel for how common autism is compared to closely related disorders. There is some dispute about whether Autism should be separate from Asperger's (this is discussed in Autism #Classification) and PDD-NOS is often just autism with a symptom or two missing. So the prevalence estimates for these related disorders are relevant and interesting information here.

These prevalence rates are of course all interesting, but as I said, I think the specific rates of all of them don't belong here. Autism spectrum disorders (which needs some drastic improvements) is the best place to compare rates of the different disorders. --WS 23:43, 9 August 2007 (UTC)

My main point was that the ASD prevalence is highly relevant; I agree "interesting" is secondary. Another reason to include ASD prevalence is that much of Autism talks about ASD when reliable information for autism proper is not available, and including ASD prevalence will give readers a better intuition for how estimates for the narrower syndrome might be. Still another reason, and perhaps the most important one, is that it's all too common for people to get confused about autism prevalence versus ASD prevalence, and we forestall that error here by mentioning both numbers, making it crystal clear that autism is not the same as ASD and the two prevalences should not be confused. The error I'm talking about appeared in a long New York Times piece on Sunday, for example; see #Regarding Autism in Girls above. It's a very common error, I'm afraid. Eubulides 05:10, 10 August 2007 (UTC)

And now that I went back and reread the edit, I see that I misunderstood it; it didn't remove all the text about ASD vs. autism prevalence, just the part that talked about prevalence of PDD-NOS, Asperger's, etc.; plus it removed some duplication about prevalence of autism and ASD. That duplication was indeed irritating so it was good to remove it but for now I put the PDD-NOS etc. part back in. Since most of ASD is PDD-NOS, and PDD-NOS means to some extent "we dunno what it is", I think it's helpful to say PDD-NOS prevalence is relatively large, to make it clear to readers how fuzzy this area is and how the prevalence figures have to be treated with care. Similarly, the dispute about whether Asperger's and autism are distinct means that Asperger's prevalence is relevant. The prevalence of Rett syndrome and childhood disintegrative disorder aren't so relevant, so the text doesn't give them. Eubulides 05:42, 10 August 2007 (UTC)

• The terminology "real prevalence" was introduced. I don't see why this change is needed. Epidemiology does not have a standard notion for "real prevalence"; there is just "prevalence".

That is mentioned twice more: some of the observed increase in autism in California was real and real changes in autism's prevalence.. I just wanted to make clear the difference between the estimated prevalence and the actual "real" prevalence, as earlier it is discussed that prevalence rates have increased..

Good point about the two "real"s elsewhere. The first one is a paraphrase of someone else's paraphrase of the source, and is too far removed in wording. I reworded it to reflect the source better. The second "real" can go. I made this change to install the fixes. Eubulides 05:10, 10 August 2007 (UTC)

• The word "warning" was replaced by "the first", resulting in the sentence "Parents usually notice the first signs in the first year or two of their child's life." with the comment "parents don't experience 'warning signs'". But the original sentence didn't say parents experience warning signs; it said they notice them, with the implication (which I thought was a clear one) that they notice them in their children. Perhaps the sentence could be reworded for clarity, but its current version is worse than the earlier one, since it repeats "the first" in a confusing way.

I just don't think the concept "warning sign" is appropriate here. Few parents will have a notion of what a warning sign is, they rather notice some things about their child that make him different. A warning sign sounds more like something a doctor would use. But indeed this could be reworded better. --WS 23:54, 9 August 2007 (UTC)

Fair enough. The multiple "the first"s grate, though. And the first "the first" is not needed. I removed it. Eubulides 05:10, 10 August 2007 (UTC)

I sense that WS is still editing so I'll stay out of the water for a bit until things settle down. WS, thanks for taking a interest in the article; it's always a pleasure to see high-quality editing. Eubulides 23:27, 9 August 2007 (UTC)

Thanks. I hope it gets featured soon. --WS 23:56, 9 August 2007 (UTC)

Early diagnosis and intervention

It is mentioned several times in the article that early diagnosis and intervention are important and affects outcome. Is there any evidence for these statements? I couldn't find any myself. Early screening might even be harmful because of the high rate of false-positives at early age. --WS 00:15, 10 August 2007 (UTC)

I add Bryson et al. as a citation for that claim, here. Eubulides 01:41, 10 August 2007 (UTC)

Screening change strayed from source

Autism #Screening was recently changed, replacing "As delay in evaluation may postpone treatment and affect long-term outcome, any of the following warning signs is reason to have a child evaluated by a specialist immediately:" with "The following signs may be indicative of autism:". I'm afraid this change caused the article to represent its source less accurately. Here is what the original source (Filipek et al. 1999, page 469) says about the signs in question:

The following developmental milestones are nearly universally present by the age indicated. Failure to meet any of these milestones is an absolute indication to proceed with further evaluations. Delay in referral for such testing may delay early diagnosis and treatment and affect the long term outcome

I understand the concern about the use of the word warning so that word should go, but the rest of the original text reflects the source much better than the replacement does.

The trend since 1999 is to be even more alert for early signs of autism, and I expect the next consensus review in this area will reflect this trend; for examples, please see Dover & Le Couteur 2007 PMID 17515625, Landa 2007 PMID 17326115, Barbaresi et al. 2007 PMID 17088521, and Crais et al. 2006 PMID 16941286. I agree that questions remain on the important benefits of intervening particularly early (a point also made in Rutter 2006 PMID 16685186) but the "may" in the original text captures some of that doubt, and if there is to be serious coverage of this particular issue it belongs under "Treatment", not "Screening".

I made these changes to implement the above comments. These changes don't revert to the original version, as they try to address some of the concerns that I sense were underneath the recent edit. Eubulides 18:15, 10 August 2007 (UTC)

I looked up a few articles referenced in the Bryson study, and from that I made up that while early diagnosis (as early as <2 years) is possible, but improvements in longterm outcome have only been proven in studies with 4-7 year old children and older. That would mean that at the time the child should have reached the listed developmental milestones, there is still plenty of time for diagnosis and start of treatment, without affecting outcome. However there might be studies that prove the contrary? --WS 21:16, 10 August 2007 (UTC)

The Bryson et al. study is a 2003 review, and so is a bit dated (I'd prefer a more recent high-quality review on this particular topic but don't know of one). The recent trend has definitely been toward earlier diagnosis and intervention. For example, Howard et al. 2005 (PMID 15766629, cited in Autism) reported improvement in outcomes, with average age at treatment program intake of about 31 months (s.d. about 5 months). In the U.S. the average delay between first evaluation by a qualified professional and formal ASD diagnosis is 13 months; see Wiggins et al. 2006 (PMID 16685189, also cited in Autism). If you do the math, you'll see why it's not recommended to wait until after age 24 months to take your possibly-autistic child to the doctor. Eubulides 22:36, 10 August 2007 (UTC)

The study by Howard et shows that treatment is effective even at young age, but it doesn't say anything about long term outcome and neither does it show a benefit of starting treatment early compared to starting at e.g. 4 years. --WS 00:21, 11 August 2007 (UTC)

Correct on both points. However, the Howard et al. study does demonstrate benefits of early intervention, and these benefits are among the most firmly established in the literature. Given the time constraints mentioned above, a parent who wants an autistic child to use the approach demonstrated by Howard et al. will need to take the child to the doctor well before the child's 2nd birthday. Filipek et al. were quite conservative, as they had to be to achieve their paper's unusually wide consensus; I don't see why Autism should be even more conservative than they were. Let's put it this way: does any reliable source contradict Filipek et al., and say that early diagnosis is unimportant? Eubulides 01:23, 11 August 2007 (UTC)

So you agree that it has not been proven that intervention at the ages mentioned in the screening paragraph affects longterm outcome, and this should be removed? --WS 11:00, 11 August 2007 (UTC)

I agree that it has not been proven that intervention at ages 12–24 months affects long-term outcome. But the article does not make this unproven claim, so I don't see any text that needs removing. There is a long temporal gap, for both technical and administrative reasons, between the parents first taking their child to the specialist (the point of the "Screening" section), and the child receiving treatment (the point of the "Treatment" section). This long gap is clearly mentioned in the intervening "Diagnosis" section. I don't think the gap needs to be restated in the "Screening" section; that would just confuse the chronology. For clarity, it's better to keep the sections of the Autism in the same chronological order that parents and children typically go through. Eubulides 15:51, 11 August 2007 (UTC)

It says: As postponing treatment may affect long-term outcome, any of the following signs is reason to have a child evaluated by a specialist without delay:' followed by signs at ages 12-24 months, so at least it suggests that. Btw. the first half of the screening section is not about screening and belongs to the symptoms or diagnosis section. --WS 17:04, 11 August 2007 (UTC)

I don't see the suggestion in that wording, but if you see it can you propose a wording that better represents the cited source? I removed the wording that was unnecessarily duplicative of the symptoms ("Characteristics") section. I don't agree that the remaining wording belongs in "Diagnosis": it's part of a recommendation to parents as to whether more-formal screening should be done, and "Screening" is a better location for it. The "Screening", "Diagnosis", "Treatment", and "Prognosis" sections are ordered temporally, and the initial parent concern comes first temporally. Eubulides 17:50, 11 August 2007 (UTC)

Featured

Congratulations, Eubulides, for restoring a wreck; you can add the star to the article now. If GimmeBot isn't through here to update the talk page and articlehistory tonight, I'll do it manually. SandyGeorgia (Talk) 15:26, 14 August 2007 (UTC)

Cause has not been found

This topic has strong view points on both sides of the fence. Some from a lack of understanding, some from fear and some from frustration because of the complexity of the disorder. Yet it is a disorder of the brain. The most important organ and most misunderstod organ in the human body. This is one reason for the puzzle pieces being a part of almost every logo for Autism. What Autism Is This link has shown in plain simple language what it is and how it affects people. As it says it this and many other articles, the cause has not been found. You can only treat the symptoms and retrain the brain. The earlier you do so the better the chances are. There are lots of cases that site people have been cured of the symptoms like a stroke patient can regain use of his or her arm. ( Just in a different manner.) Some have gone too long to be cured or retrain the brain. Lots of money has been spent to find out what the cause is and is still on top of the main discussion board and will remain to be so until a cause for ASD is found. Jresner 02:33, 29 August 2007 (UTC)

Autistic rights movment

many autistics don't want the terms disorder used to descripe this condition. sine the condition has positive effects and some belive to be benificial negitive terms should be removed

the autistic savant Trev_lite —Preceding unsigned comment added by 67.170.219.52 (talk) 06:05, 2 September 2007 (UTC)

Autism attempts to follow the Wikipedia Manual of Style for medicine-related articles in using careful language to describe medical conditions. The standard medical terminology uses the word "disorder" here; see, for example, the World Health Organization's ICD-10 F84.0. The Autism article has to describe the mainstream medical usage, as that is a core goal of the encyclopedia, but the article attempts as best it can to avoid pejorative words under the constraint of sticking to standard medical terminology. If you can suggest specific places where this goal hasn't been met please let us know here. Eubulides 06:29, 2 September 2007 (UTC)

Genetics and immunization changes strayed away from sources

These changes altered the article's text so that it disagreed with its cited sources. Doja & Roberts (PMID 17168158) do not say the epidemiological evidence is "inconclusive"; instead, they write phrases like "overwhelming majority showing no causal association". Sykes & Lamb (PMID 17764594) do not say that the 90% statistic is "probably" an overestimate; they say it "may be overestimated" as well as things like autism being "one of the most heritable neuropsychiatric syndromes"; they use the notion of "probably" for a different statistic (to quote them: "Previous estimates of the number of genes involved are likely to be underestimates"). Nor do Sykes & Lamb say that the problem is that the 90% estimate "does not address the interplay between genetics and vulnerability to environmental factors"; on the contrary, they list environmental factors as a relatively small part of the overall picture (to quote them: "The recent identification of unanticipated levels of structural genetic variation in individuals with autism suggests that the genetic aetiology of autism is likely to be much more complex than previously supposed, caused by a combination of rare and common variants, and involvement of karyotypic and submicroscopic structural variation, together with interaction of variants with each other and with the environment."). Since this topic is controversial, the article needs to keep close to the reliable sources; let's try to avoid bias in our summaries. Eubulides 06:39, 5 September 2007 (UTC)

June 2007 telephone survey

I'm tempted to simply delete this phrase: "A June 2007 telephone survey of about 11,817 households suggests that vaccinated kids have a 2.5 times greater chance than completely unvaccinated kids of developing a neurological disorder . [50]", as the study in question has huge statistical flaws (reviewed here: http://photoninthedarkness.blogspot.com/2007/06/survey-says-nothing.html ) and the researchers have competing financial interests.

While a bit of criticism could balance the statement, I believe such a discussion belongs on MMR_vaccine_controversy instead. Low vaccination coverage associated with the MMR scare has already resulted in several new outbreaks of measles (including deaths) and unbalanced statements based on horribly conducted studies on this issue are grossly irresponsible at best.

Smocking 14:20, 16 September 2007 (UTC)

I already deleted it once. A telephone survey is about as unreliable and unscientific as it gets; perhaps useful in politics and other propaganda, but has no place in a medical or scientific article, neither here or at the MMR vaccine controversy issue. It's also redundant, as the topic is already covered. This "survey" is a clear case of ascertainment bias in a biased sample; those who subscribe to this theory respond positively, while everyone else is likely to hang up. SandyGeorgia (Talk) 14:30, 16 September 2007 (UTC)

Thanks for removing it. This has probably been discussed before, but given the pervasiveness of pseudoscience, fear-mongering and quackery, it's no surprise to find it on Wikipedia as well. It's not technically vandalism, since the people who make these edits truly believe them to be true and include sources which look reliable to them at first glance. While a different point of view is refreshing now and then, and mostly deserves a place on Wikipedia, it starts to get a bit hazy if it can kill people. Is there a policy page on this? Smocking 16:37, 16 September 2007 (UTC)

There are a lot of policy decisions from ArbCom on pseudoscience, but I'm not sure they specifically apply here. What is really missing—in fact, it's quite a pet peeve of mine lately—is a policy to somehow elevate medical content to the same sort of status enjoyed by biographies of living persons; that is, when content has the potential to harm real people in real life, that content should be held to the very highest standards of sourcing (as is the case on BLPs). We have blatantly, horrificly wrong medical content on Wiki, being spewed across other mirror websites and regularly hitting number one on Google, and that is disgusting. I've been considering launching an initiative in this area for some time, as I am *so* disgusted at the level of medical misinformation on Wikipedia, and the apparent disinterest of the Medicine Projects in doing something about it. The Medicine Projects are ineffectual and disinterested; I suggest this issue needs to be brought to Jimbo's attention and elevated to the same level of importance given to BLPs. SandyGeorgia (Talk) 16:49, 16 September 2007 (UTC)

Done; I posted a query to Jimbo. SandyGeorgia (Talk) 16:58, 16 September 2007 (UTC)

Given all the trouble we've been having with BLP, I do not want to start another BLP-style shitfest. On the other hand, the arbitration committee has already given you what you seek [3]: Wikipedia:Verifiability and Wikipedia:Reliable sources require that information included in an article have been published in a reliable source which is identified and potentially available to the reader. What constitutes a reliable source varies with the topic of the article, but in the case of a scientific theory, there is a clear expectation that the sources for the theory itself are reputable textbooks or peer-reviewed journals. Scientific theories promulgated outside these media are not properly verifiable as scientific theories and should not be represented as such.. Medicine is an applied science, and clearly medical articles should rely on sources appropriate for a scientific article. A voodoo poll is not that. Raul654 17:07, 16 September 2007 (UTC)

This survey does not belong in Autism for the reasons that you mentioned. I don't think MMR vaccine controversy would be a good place for it either; the survey wasn't specific to MMR, and in the U.S. vaccine concerns have mostly centered around thiomersal, not MMR. A better place would be Thiomersal controversy #Rationale for concern, next to the claims that autism is rarer in the Amish community. Eubulides 16:05, 16 September 2007 (UTC)