Autism Vox

110 opinions for Where Are All the Autistic Adults?

• Club 166
  May 9, 2008 at 1:15 pm

  I have mixed feelings about this proposed study, though I know that the NAS has come out in favor of it.

  I expect that there will be gross underreporting of adult autistics, no matter how hard they look. And when the study reports a lower incidence than 1:150 many will come out to say “I told you so. There is an autism epidemic.”

  Two factors will combine to make this so. First, because the diagnosis of autism didn’t exist when these adults were young, many with the more classic symptoms remaining will be hidden behind other psychiatric diagnoses, while many who have come to accommodate to their symptoms may have never considered themselves to be autistic, and wouldn’t now.

  The second big reason is why in the world would an autistic who has progressed to the point of “making it” in a NT world want to slap a label on themself? So they can be further ostracized and marginalized in society, and their bosses can have an excuse for getting rid of them?

  In some ways this will be like studies looking for the incidence of homosexuality in Muslim countries.

  Joe

• Joseph
  May 9, 2008 at 1:28 pm

  Kirby: “With all of the media attention on autism these days, one would think that adults with the disorder would come forward in search of social services, adult education, job training programs, support groups, and other ways that would make their numbers be counted.”

  Kirby first of all is incorrectly assuming that all autistic adults know they are autistic. They don’t and there’s evidence of this.

  Second, he is assuming that they aren’t getting services unless they appear registered as autistic in some dataset. It’s likely that anyone needing and wanting services is getting them in some way if they are available, autism diagnosis or not.

  Third, he’s assuming that all autistic adults are desperate for the services he notes. This is not going to be the case for all (even most) adult autistics.

• passionlessDrone
  May 9, 2008 at 1:28 pm

  Hello friends -

  I have an idea of how we can, at least, get a better idea if the MR diagnosis of yesterday has morphed into the autism diagnosis of today. Why not scan 1000 MR / schizophrenic adults and see if they display similar physiological markers that are found in autism?

  They could look for very low cholesterol, glial activation, amounts and ratios of inflammatory cytokines, receptor binding of various neurotransmitter sites, levels of neurotransmitters and/or growth factors, levels of vassopressin/oxytocin, TH2 immune shifts, and plenty more.

  The fact that we don’t have a single biochemical marker that always means autism doesn’t mean we don’t have an array of things that frequently mean autism. Test enough of them and you can start getting a fuzzy picture.

  Of course, such an expidition could get pricey, but it would give some insight into if what we are experiencing today is new or not. It seems unlikely this will be done anytime soon though.

  OK!

  - pD

• laurentius-rex
  May 9, 2008 at 4:36 pm

  Very dodgy if they are not going to use the right techniques, I rather suspect they won’t and there findings will be inconclusive.

  You can’t just go knocking on street doors asking “are you now or have you ever been a member of the autistic party”

  As for Passionless Drone’s suggestion, that is mere fantasy, that kind of mass screening you cannot do in a democratic country even if the resources were there (which they are not)

  You would need a degree of compulsion in order to guarantee validity.

  There is of course an inbuilt bias into finding fewer adults, because that would absolve the government of responsibility.
  Similarly you can’t trawl medical records.

  Some neutral protocol of actually identifying autistic traits on a truly demographic basis will have to be established, and remember adults are not anything like as compliant as school children.

• Ms. Clark
  May 9, 2008 at 5:21 pm

  pD’s comments are pretty odd. It’s as if you can just grab people and force them into invasive studies.

  I guess it’s like, well they’re just obviously either autistic or mentally ill or MR so it’s not like they have any rights to refuse to have their blood taken. I mean, just walk up to one and bash them on the head and take whatever you want, right?

  So far there aren’t any biomarkers or brain structures that are specific to autism.

  Though without being too physically invasive you could find some external markers like there may be particular hand-prints that are associated with autism (dermatoglyphs… not caused by vaccines, unfortunately for the antivaxers, and not cured by the GFCF diet or the “mito diet, they are set long before birth and point to more to genes), there are things that you can see in a photograph, strabismus, wide set eyes, larger head, smaller head…

  There are body movements, swaying while standing, besides stimming.

  But the only legitimate way to ID autism in adults is to interview their parents, but the parents of a 50 year old might not recall some key details. Parents tend to repaint history in whatever form they think is more ideal (or more dramatic), though not 100% wrong they can get key details wrong.

  Can you tell “developmental delay” from autism 60 years later if you look at doctor’s reports? Maybe in some cases, but not always.

  And no IRB is going to allow you to inform strangers that you think they are autistic. For some it would be a welcome relief for others it would bring to bear all of the stigma that people like the mercury parents and antivax parents and ABA extremist parents have heaped to the sky on autistic kids.

  Yeah, everyone wants to be called autistic these days, don’t you know? They want to have people wondering if they ate poop as a child (thanks, Kim Stagliano) and if they “broke their mother’s arms” (thanks Mark Geier) and they are soulless, devoid of emotion and all traces of humanity, scarcely deserving of the label “human,” lacking “personhood” (thanks Tom Insel), they are kidnapped empty shells, (thanks Portia Iverson and Jon Shestack), they attack their parents during adolescents (thanks, Lenny), they have destroyed families (thanks, Rick Rollens) and devastated economies all over the world (thanks, lots of liars).

  Oh, yeah. Thanks to all the excellent autism advocacy from “parents” and Big Autism, a person who is employed might lose their job if it became known that the reason they are odd is “autism”. I know autistic adults who refuse to tell people because they are afraid of losing their livelihoods!!!!!!

  And thanks to David Kirby former writer for “Outweek,” for mocking the fact that autistic adults exist at the same rate as children, and for making it harder to autistic adults to “come out.”

  These people including people ike pD who want to say autism is vaccine damage, are harming and even ruining the lives of autistic adults and then many of them laugh at the fact that “autistics adults can’t be found.”

• Ms. Clark
  May 9, 2008 at 5:26 pm

  Oh, I forgot, extra minicolumns in certain parts of the brain are a pretty solid marker for autism. Problem is you’d just have to kill the people you want to measure them in and take their brains and slice them up (so far). And surely that would be acceptable to a few, but most would find that offensive. Though they might be happy to neglect autistics until they die homeless and then take their brain.

  See my blog entry about Greg Garness.
  autismdiva.blogspot.com/2007/02/remembering-greg-garness-and-sarah.html

  It is possible to trawl through medical records, but I think it would have to be done outside of the US since we don’t have a massive database on the health of the citizenry like they do in some countries.

  And they need to account for the autistics who have been killed in institutions and elsewhere from abuse and neglect and add them in, otherwise the total will be too low.

• laurentius-rex
  May 9, 2008 at 5:40 pm

  If they truly want a Caesar Augustus style headcount they will need a huge pilot sample.

  The only way to do it and get any validity would be at a randomised street level census, then again you would identify autism by extrapolating from the traits. Now to do it accurately would require a lot of questions, and the more questions, the more likelihood of lack of co-operation.

  For what it is worth I did design just such a survey to determine the true numbers of disabled people in Coventry, it involved people knocking on doors, and people who could speak several asian languages. The figures, which seemed huge at the time compared to what the “official” statistics said, have over time turned out to be lower than subsequent national censuses have shown. The figures that were adduced did for a while become part of the official estimates for planning purposes though.

  Yes I do know how to do these things, but I have not been asked, I’m just another adult autistic statistic to “them”

• passionlessDrone
  May 9, 2008 at 6:03 pm

  Hi Everyone -

  LOL! ROFL!

  Who said anything about forcing people, certain folks having no rights, or bashing anyone on the head? All I said was that such a thing was technically feasible and would yeild useful information. [Something, I note, was not disputed.]

  There are dozens of studies out there already that compare some of the values I mentioned between autism, MR, schizophrenia and / or ‘normal’ people. Does LR or Ms Clarke think these studies were performed in North Korea? It is all about the carrot; ask people nicely and offer them something for their time, and a sufficient number of participants could be located. The fact that some people are paranoid doesn’t mean everyone is.

  “So far there aren’t any biomarkers or brain structures that are specific to autism.”

  There are several things, however, that seem to exist more frequently, or to different degrees in autism than in those other categories. I believe I made that clear; which is why (right now), you would need to screen for a variety of things. I also was quite clear that such information would be a fuzzy picture, at best, with what we know now. But it would still be better than nothing.

  Where is RAJ to jump in and say that this is precisely the comparison we need to be performing? [Assuming we actually want the question answered, which may not always be the case.]

  Ok!

  - pD

• Regan
  May 9, 2008 at 6:25 pm

  How they propose to conduct this particular study–

  “(…)The survey involves interviews and examinations of a random sample of people who may have the condition and where possible the collection of information from family and carers. Statistical methods are then used to summarise the data and estimate how many people have the condition and what are their circumstances. The results will appear in published reports for the government, public health and local health and social care services and articles in scientific journals. The Government has stated that the information will be used to develop a national plan to support these people.”
  (…)
  The prevalence study will make use of new data collected in 2007 by NatCen and Professor Brugha’s team to record the number of adults with Asperger’s syndrome and high functioning autism. There will also be an additional part to the study on the number of people with autism who have more complex needs and learning disabilities. The aim of the combined research will provide good epidemiological information in terms of prevalence and the characteristics and problems of this group.
  (…)
  I’m not a statistician, or a psychometrician, so I don’t know how good of a measure this will be for the information they seek, or what the comparison groups are.

• Nothing Like a Ferris Wheel
  May 9, 2008 at 7:08 pm

  […] the heavy rain and wind outside—serious weather for the serious tone of today’s posts—summer is coming and with it surf, sand, sun, ocean swimming, and rides (!!!!!). The ferris […]

• H6
  May 9, 2008 at 8:26 pm

  “They could look for very low cholesterol, glial activation, amounts and ratios of inflammatory cytokines, receptor binding of various neurotransmitter sites, levels of neurotransmitters and/or growth factors, levels of vassopressin/oxytocin, TH2 immune shifts, and plenty more.”

  If that’s autism, it makes autism sound like a chronic neuroimmunological illness, not just a developmental disorder.

• Ms. Clark
  May 9, 2008 at 9:04 pm

  Too bad you don’t understand autistic adults very well, pD. For one thing, they are less likely to even answer the door in a door to door survey, though I’m not saying they’d never answer the door.

  And IRB’s don’t allow one to compensate people for their time beyond something trivial. You can not ever give the impression of bribing people or pressuring them into exposing them to the experiment.

  It is against the rules of (I hope) most IRBs to “inflict unintended insight” on people. Maybe you don’t know about it, but I learned about it because I was doing psych research on human beings as a Research Asst’. in the psych dept at UCD.

  Like you couldn’t just go through a bunch of medical records and find which people are not the biological children of their fathers (but are the children of their mothers) … and inform them. You can’t tell people that their mother cheated on their father (this is more common than most people think, so I understand).

  It might be interesting to tell them that their fathers aren’t their biological fathers… but it could be very upsetting. It would/should never be allowed in a country with IRBs.

  The same way, it’s unethical to just take a random person and even hint to them that they are on the autism spectrum, and if you are asking them to give blood or go in a scanner you must tell them why they were selected.

  Same with the parents, you can’t just tell the parents that their 50 year old son has autism. Remember that until recently it was “caused by cold hearted mothers” and now it’s caused by vaccines, don’t you know, and autistics are just so much human garbage, don’t you know. See above for a brief run-down on the way autism is being stigmatized by Big Autism (lets not forget how parents think about killing off their kids, they are so hopeless and such a burden).

  I hope their is a way of doing a good survey but there are loads of land mines. And whatever “biomarkers” you might find in kids are not necessarily going to be stable through a lifetime. Pretty odd to think that they would be. Except genes, and so far they can’t identify genes for all autistics just something like 40%. And just because a person has Frag X doesn’t mean they are autistic…. they could be just DD.

  The thing is that the stigma against autism created by the antivaxers is so thick that you have made it even harder for autistics who know they are autistic even to come forward and be counted, and I don’t see you losing any sleep of that with all your “take care” stuff, pD. I don’t see you looking out for the “care” of autistic adults when you seem to be mainly interested in the latest biomed fad hype-othesis and fad cure… what’s it now, mitochondria?

• Kristina Chew, PhD
  May 9, 2008 at 9:10 pm

  Yes, mito. Just heard of a family who’ve been told by the pediatrician to look into this……

• Kristina Chew, PhD
  May 9, 2008 at 9:19 pm

  The problems and complications being raised—and larry’s point about a “Caesar Augustus style headcount”—make me think of the connotations of the word “census”:

  a count of a specific body/population of people

  and of “censor” and “censorship”—why is it that the counting tends to lead to “censoring” in the sense of judging, making distinctions, scrutinizing?

• Joseph
  May 9, 2008 at 10:04 pm

  pD’s idea has a number of problems. For one, they are not trying to determine if some adults with schizophrenia are also autistic. (Which is known to be the case already). They want to get a count of all autistic adults, not just the adults from one population. Besides, if you’re trying to do this, it would appear to be easier to evaluate the persons for autism, rather than trying to see if they have some biological markers. (Other populations that are even bigger might be the OCD and ADHD populations).

  It’s entirely possible that, say, 10% of all schizophrenics are autistic and at the same time schizophrenics as a group don’t have biological autistic markers. This can happen statistically, and it can also happen because other markers will confound the findings. Further, you can’t separate a subgroup of schizophrenia who have markers that cluster like autism and call them autistic. It’s very unlikely this would be a reliable determination.

  Finally, aren’t a lot of these proposed markers basically in an unresolved hypothesis stage?

  One significant problem of the whole endeavor is that diagnoses of adults differ from those of children, so how can we expect them to find equivalent numbers? From a paper I was reading very recently, it was clear, for example, that psychologists are reluctant to diagnose autism in adults unless the adults appear to be unhappy with their situation. If this were the case in children I guess my son’s diagnosis should be removed. Never mind all the autistic features.

• H6
  May 9, 2008 at 11:08 pm

  It would be good if someone could figure out a way for an appropriate study to be done to help settle this. But it seems like there is real resistance to doing any kind of study. There seems to be a kind of Autism Liberation Movement
  forming which will not cooperate with the medicalization of autism and all the objectification (judging, making distinctions etc.) that goes with that. This has the makings of a perfect storm.

  In terms of the control of the autism narrative, Kirby seems to have won this round. It will take some serious scientific studies to prove him wrong.

• anomamos
  May 9, 2008 at 11:18 pm

  H6,

  The vast majority of autistic adults don’t know they are autistic. So how exactly are they being “organized”????

  Kirby’s already being mocked and laughed over this “article” of his. He made a glaringly large error in his post. A huge laughable error. Typical for Kirby, though.

  I expect a blog entry is forthcoming that will explain it. Watch the Autism Hub.

• Kristina Chew, PhD
  May 9, 2008 at 11:33 pm

  I think it could rather be said, that a sort of “Autism Liberation Movement” is established, alive and very busy.

• Emily
  May 9, 2008 at 11:59 pm

  ALMs?

• C. S. Wyatt
  May 10, 2008 at 12:37 am

  I was diagnosed at 38 as HFA. Before that, I was just weird. I met an engineer last week who was diagnosed in his late 50s with Asperger’s. He commented that I seemed a bit “more odd” than other researchers.

  I still resist the label at times. It has caused issues for me with various professionals and even within my academic department. Not disclosing, however, means giving up one of my connections to the students and parents I meet — which proves helpful at times.

  Still, if I were to return to private industry, I’d never mention it again and would never have put anything online about autism. I’d not exist and Kirby would be happy to be proved right.

• C. S. Wyatt
  May 10, 2008 at 12:43 am

  @anomamos

  We are slightly more organized than anarchists, but less organized than the Democratic Party in the U.S.

• Justthisguy
  May 10, 2008 at 1:01 am

  I did not suspect that I had a bit of the “A” until I was already past the age of fifty. By that time, my mother had died , my father was on the way out, and most folks who had known me when I was very young were already dead. According to what I could find online, I prolly R 1, so I called up the CARD telephone number in Florida. The woman who answered the phone said that getting a dx would cost me a couple of kilobucks, and get me no services in Florida, and besides, I seemed pretty normal to her.

  I felt like quoting Lurch to her, but just said “Thanks, g’bye!

• Kristina Chew, PhD
  May 10, 2008 at 1:36 am

  a little anarchy can go a long way—-

• laurentius-rex
  May 10, 2008 at 5:18 am

  The Diva is right, in that any academic study these days has to go through rigorous ethics procedures before anyone is allowed to actually contact another human being in pursuit of the case. It was not always so, and there are many forms of research that are not subject to this same ethics.

  As for parents ability to describe the early years of there offspring, it is funny how autism researchers supposedly well grounded in psychology ‘forget’ the research that has been done into memory, schema’s, reconstruction etc.
  Political market research for one, and then there is journalism, where deception and psychological injuries to third parties are considered fair in the pursuit.

  The research I was involved in back in the 80’s was of a category that was neither academic nor journalistic, being social research or action research carried out by NGO’s with the intention of influencing the body politic.

  Just try and remember the way the doors hung, the positions of light switches, the number of electrical outlets, the configuration of window fastenings in any house you have not occupied for twenty years and see how much inference and confabulation you need, to come up with credible (but maybe wrong) answers.

  I’ll let you into a little secret, I am autistic and what I remember comes into conflict with semantic knowledge of what I know of how doors are usually hung, it seems absurd that doors would open in a way that obscures the light switches in a house so the tendency is there to reconstruct the actual memory in favour of what seems logical. However I have photographic evidence that the original, illogical memory is the accurate one.

  Most parents will reconstruct there childrens (and there own) biographies in the light of whatever current schema and knowledge base they have, not pure recollection. How diagnostitians control for this I don’t know, but it makes SBC’s Class centre hypocritical in the extreme, I prefer hypercrisy to hypocrisy.

• Ms. Clark
  May 10, 2008 at 5:25 am

  Larry, I’m frightened. I think we are agreeing too much.

  I made this same point with Lee Grossman of ASA (or tried to) a few days ago. He said, “but the teachers, the special ed teachers, they all tell me that there are more autistic kids now….” I said, “Look, I have a degree in psychology, and I know how people’s memories are influenced by what they think they were supposed to see.”

  :-) Not that anyone should be impressed with my degree in pysch, but I did learn that the human memory can be tremendously bad.

• laurentius-rex
  May 10, 2008 at 6:27 am

  It’s all in the neurology, although there are still contending theries as to how memory is encoded, one thing is clear, there is a lot of selection and forgetting going on, so much incidental information is redundant, otherwise we would all be like shereshevsky. (Lurias S)

  Now this does not mean the past cannot be reconstructed, but not from one single persons memory, it is deductive in the manner in which historians use multiple sources (and increasingly these days archaeology) to cross examine written accounts and seperate them from the ideological and political context.

  Memory needs corroboration (this is why retro dx is so unreliable)

  Memory is also often second hand, I can recall my parents recollections of me, but then how accurate are my own recollections of what exactly they did relate to me.

  My episodic memory is poor, I have to cross reference my “photographic” memories with contemporary history to deduce when an event took place as to whether for instance a particular building had been demolished or built, that sort of thing.

  I do theorise that autistic memory is less selective and episodic, part of my agreeing with the weak central coherence thesis, but that is by the by. I remember sensations and pictures, not events as such. For example I do not recall going to Dudley Castle with my cousin, I recall a particular train journey in its sensations and the event itself is a later interpolation(sic) from the interpellation (sic) of my Parents that this was when I experienced it.

• passionlessDrone
  May 10, 2008 at 8:13 am

  Hi Ms. Clarke -

  This was a much more reasoned response. You went nearly the entire post without insulting me. Very impressive.

  For the record, I was only proposing the utility of such an idea, I am willing to accept there may be logistical problems. My scheme (or whatever), however imperfect, may still yield interesting information.

  “Too bad you don’t understand autistic adults very well, pD. For one thing, they are less likely to even answer the door in a door to door survey, though I’m not saying they’d never answer the door. ”

  There are a million of them out there (supposedly) and if we simply follow the links on this blog, we can find that a great many of them are happy to receive a diagnoses.

  http://www.usatoday.com/news/health/2007-07-23-adult-diagnosis_N.htm?csp=34

  via

  http://www.autismvox.com/where-are-all-the-adults-with-autism/

  Maybe adults with autism as just as heterogeneous as children and making blanket generalizations about them doesn’t work.

  “It is against the rules of (I hope) most IRBs to “inflict unintended insight” on people. ”

  Really? What about the evaluations wherein people with SLOS were evaluated and found to have autism at extremely high rates? What about the research people recently did at mental institutions and found that 38% (or whatever) of the people were found to be diagnosable as having autism? Can you explain to me why these studies did not violate this rule, but the one I propose would?

  “And whatever “biomarkers” you might find in kids are not necessarily going to be stable through a lifetime. Pretty odd to think that they would be. ”

  If I remember correctly, the glial activation study by Vargas included several adults, nearly all of whom expressed the same physiology as the children. These studies, of course, required a post mortem analysis, but in any case, we know of at least one biomarker that fails your criteria. I suspect there will be more.

  But your point is well taken, but it is just another very, very good reason to perform a large scale biomarker analysis, in this case, from autistic adult to autistic child. If children with autism show a definitive increase in tnf-alpha in their CSF, but adults do not, this would be good information to have. Likewise with cholesterol processing, oxidative stress levels, or plenty of other things.

  When it suits your purpose, you perform microscopic analysis of clinical analysis research that don’t fit your meme; all I am suggesting here is finding ways to collect more information. Learn more.

  ” I don’t see you looking out for the “care” of autistic adults when you seem to be mainly interested in the latest biomed fad hype-othesis and fad cure…”

  LOL! Another two bit psychoanalysis from Ms. Clarke. If this were an IRB, you’d have no right to force such damaging insight onto me! Hahahahahahahahaha.

  TAKE CARE!

  - pD

• Kristina Chew, PhD
  May 10, 2008 at 9:07 am

  Cited along with USA Today!

  While at the initial moment and first few months of finding out my son’s diagnosis, I was not what most would think happy, I did feel a lot of relief to know “what” he had. In the early years, it was hard to talk openly about Charlie’s diagnosis; that difficulty has quite disappeared in the past few years, and we have all been happier for it.

• mayfly
  May 10, 2008 at 9:09 am

  Both of these are from the Journal of Autism and Deveopmental Disorders

  Brief Report: Adults with Mild Autism Spectrum Disorders (ASD): Scores on the Autism Spectrum Quotient (AQ) and Comorbid Psychopathology
  Cees Ketelaars, Ernst Horwitz, Sjoerd Sytema, Johan Bos, Durk Wiersma, Ruud Minderaa and Catharina A. Hartman
  Volume 38, Number 1 / January, 2008

  Abstract While knowledge about symptom presentation of adults with mild ASD, including comorbid psychopathology, is limited, referral of adults with suspected mild PDD is increasing. We report on pilot research investigating whether patients diagnosed with mild ASD (n = 15) and patients who were not diagnosed with ASD (n = 21) differed in terms of (a) AQ scores and (b) Axis I and II disorders, assessed by the SCAN and the IPDE. Additionally, AQ scores were compared with those from non-ASD patients referred to a general outpatient clinic (n = 369). The results showed very few differences between ASD patients and non-ASD patients. Self-report may not differentiate mild ASD patients from non-ASD patients and Axis I and II disorders seem equally prevalent among these two groups.

  However

  Add to marked items
  Article
  Brief Report: Assessment of a Screening Tool for Autistic Spectrum Disorders in Adult Population
  Michael Ferriter, Dougal Hare, Patricia Bendall, Christopher Cordess, Karon Elliot, Ingrid Hudson, Rachel Humpston, Jean Jones, Pauline Souflas and Michael Taylor
  Volume 31, Number 3 / June, 2001
  Full Text

  There is no abstract for the above. The survey took place at mental hospitals. There were 7 false positives, i.e. people identified as autistic by the survey who upon fiurther review were found not to be for every one whose diagnosis survived further review. Note the surveys were conducted at a mental hospitals. About 2.3% of the patients were identified as being on the spectrum. There were no false negatives.

  There is a good chance the proposed survey will over identify individuals.

• Joseph
  May 10, 2008 at 9:20 am

  Here’s the post by Sullivan about the order of magnitude error in David Kirby’s piece. See also the last part of the post where local authorities are asked if they think the counts are underestimates. I guess David Kirby either didn’t read the paper or didn’t consider that part very important.

• Sullivan
  May 10, 2008 at 10:24 am

  Mr Kirby made a simple error–of a factor of 10–in his calculations.

  http://leftbrainrightbrain.co.uk/?p=809

  The basic idea is the same: the number of adults *identified* with autism is lower than expected if there is the incidence is constant.

  One can use this to support a theory (an epidemic in this case). Alternatively, one can take this as an indication that many adults with autism are not counted and possibly are not receiving appropriate services and supports and ask that an effort be made for better identification.

  The two are not mutually exclusive–one can believe that there is an epidemic and that there are uncounted adults with autism. To give Mr. Kirby credit, he does this in his post.

  However, if one acknowledges that there is even a possibility that a portion of the population is underserved, it is imperative that one call for an effort to find and help those who may need it.

• H6
  May 10, 2008 at 11:03 am

  In all the versions and what-if possibilities, the Hidden Autistic Adult Diagnostic Substitution Theories are beginning to sound a little like the 9/11 Conspiracy Theories.

  Given that that there seems to be no research that can ever be done to satisfy or convince anyone one way or the other, the theories will have long lives.

• Joseph
  May 10, 2008 at 11:13 am

  H6: There is research and data, and it is convincing. I’ve discussed that at length. That some people pretend it doesn’t exist because it doesn’t jive with their beliefs and they are unable to address it is a different matter. Relying on administrative counts instead to support one’s views is, on the other hand, not very convincing.

  I’ve previously proposed various ways to test the autism epidemic hypothesis, so it’s not true that the question is untestable. For example, Lotter (1967) could be replicated.

• Kristina Chew, PhD
  May 10, 2008 at 11:23 am

  I’m not at all sure of the comparison. When one really learns about autism and what it is, one starts to see that more people (adults in particular) might be autistic than one had thought. The DSM criteria for autism are for children and it’s still not established how to accurately and consistently diagnose it in adults.

• Joseph
  May 10, 2008 at 11:28 am

  Here’s just one of many possible examples for H6. What are your views on this in light of the fact that about 4% of adults are identified as having OCD?

  I have many more.

• Sullivan
  May 10, 2008 at 11:33 am

  Drone–

  you almost went the entire post without insulting Ms. Clark. Almost.

  The point of looking amongst groups like diagnosed schizophrenics for adult autistics is to see if there are people who should hold dual diagnoses or people who are misdiagnosed.

  The point is not to test whether some proposed biomarkers are present. You statement was not disputed because it was off topic.

  The test is already going on (or has been completed). This was mentioned in news articles about Dr. Minshew, when she mentioned that studies were showing that adults in hospital settings with schizophrenia diagnoses were found to have behavioral signs of autism. Dr. Mandell is discussing this at IMFAR this year.

  If one then wants to go back and see if the biomarkers are different amongst these two groups, it might make some sense. To do it before having an idea of which individuals might be autistic is putting he cart well before the horse.

  A clearer measure would be to test adult autistics without schizophrenia diagnoses. Unless, that is, you are proposing that these biomarkers are (a) very generalized to the entire autistic population or (b) a marker of children who will grow into adult autistics with schizophrenia. Somehow, I doubt that is your intent.

• H6
  May 10, 2008 at 12:44 pm

  The problem may be that once one learns about low-functioning autism and what it is, one is surprised by the fact that there is not more of it in adults. Hence the concern that a new element is at play causing something akin to an epidemic.

  Given all the apples and oranges in this debate, maybe the question should focus on whether there is more low-functioning autism today than in the past. Low-functioning autism may need a debate and a movement all by itself without getting lost in the background debates of the high-functioning Autism Liberation Movement.

  One gets the impression that there is less ambiguity about low-functioning autism than the rest of the higher-functioning spectrum which is capable of being expanded politically by definition until it includes everyone.

  Parents of low-functioning autistic children who need 24/7 attention are dealing with an issue that can’t be ameliorated or swept under the rug by imagining an underground army of closet autistic adults out there hiding in their homes from researchers and social services.

  Low-functioning autism has been described by some parents as a biomedical horror show that involves the whole body, not just the brain. In terms of day to day medical issues, a parent of a low-functioning autistic child may have very little in common with parents of children on the rest of the spectrum and it seems like people on the rest of the spectrum–and their parents–have dominated the debate.

  It seems like most parents of low-functioning autistic children see autism as a chronic illness that is also a developmental problem. People on the rest of the spectrum seem like they are insulted if you call autism a chronic illness in any way. As Yeats might say, the center can not hold.

  (Actually, he would say “centre.”)

• Cliff
  May 10, 2008 at 1:27 pm

  “One gets the impression that there is less ambiguity about low-functioning autism than the rest of the higher-functioning spectrum which is capable of being expanded politically by definition until it includes everyone.”

  Not the best comparison that might exist, you know. You’re making statements about people who, by far and in large, don’t talk in regards to how much debate has been substantiated in comparison to one in which the contested group.

  “Parents of low-functioning autistic children who need 24/7 attention are dealing with an issue that can’t be ameliorated or swept under the rug by imagining an underground army of closet autistic adults out there hiding in their homes from researchers and social services.”

  Sure, though I object to the singularity of the terms. But does that matter? It’s relevant to discussions of how to address this population, but not as to its existence. There are theories as to the existence of these populations, stemming from diagnoses of mental retardation and the nature of psychiatric institutions.

  “Low-functioning autism has been described by some parents as a biomedical horror show that involves the whole body, not just the brain. In terms of day to day medical issues, a parent of a low-functioning autistic child may have very little in common with parents of children on the rest of the spectrum and it seems like people on the rest of the spectrum–and their parents–have dominated the debate.”

  Autism in general has also been described as the stealing of the soul by the devil, doesn’t make it so. Just to be clear.

  But oh, yes, Cartesian dualism at its finest. That a developmental condition could influence the body- to shame! No, that doesn’t say anything about its existence medically, either.

  “It seems like most parents of low-functioning autistic children see autism as a chronic illness that is also a developmental problem. People on the rest of the spectrum seem like they are insulted if you call autism a chronic illness in any way. As Yeats might say, the center can not hold.”

  Believe me, with the regular degradation autistic individuals have to deal with in the media, that’s not insulting. Might there be disagreement? Sure.

  I would argue that there is an effective category error here, and if you wanted to hold this argument as stable, you could effectively make alcoholism not an issue in and of itself but a byproduct of sociality in general. It’s an absurd argument because it asserts that because one can lead to the other one is part of the other. It doesn’t particularly work well.

• laurentius-rex
  May 10, 2008 at 2:44 pm

  This is assuming that “Low Functioning” or whatever you want to call it, is a fixed state, we can’t ever know how many people would have been described in that category given current nosologies without a time machine.

  Autism may be fixed neurologically but outcome is not determined so categorically, it is a “developmental” condition after all.

  Autism,to be honest, in all its manifestations simply is not well enough understood, it never will be if the biomedical delusionists and fanatics don’t throw in the towell with there overlawyering and there intimidation of researchers.

• Cliff
  May 10, 2008 at 2:48 pm

  Yeah, in my comment, I did assume the static condition based off of initial diagnosis, but also didn’t assume the outcome based on that (which is why you’ll find lovely modifiers like “by far and in large”). The ideas themselves as static values, I can attest, are issues themselves.

  Cliff

• Joseph
  May 10, 2008 at 3:20 pm

  The problem may be that once one learns about low-functioning autism and what it is, one is surprised by the fact that there is not more of it in adults.

  H6: You completely ignored the evidence I posted. But if “low functioning” autism is your only concern, tell me your views on this adult study from over 25 years ago.

• Ms. Clark
  May 10, 2008 at 4:12 pm

  pD, I think you are little beyond ridiculous, so far beyond that I can’t “LOL” or “hahahahaahah!”.

  It’s really kind of stunningly sad that you can’t tell the difference between offering a diagnosis of a disorder that may have an intervention compared with taking random people and slapping on a diagnosis with nothing even vaguely like a promise that there MIGHT someday be some help regarding that condition.

  If you were educated in the least in the ethics of “screening” for any disease/disorder/problem/whatever it is widely understood that you do NOT screen for conditions, no matter how heinous, if there is no treatment available.

  Number 1, it’s expensive to screen for just about anything, so if public health or whatever authority wants to help, they need to start with screening for conditions that are #1 well characterized, #2 have a reliable test that doesn’t produce a gajillion false positives, and #3 has a reasonable treatment that can be reasonably delivered to the people who get the dx from the screening.

  In other words, they will never screen for an incurable diseae. Won’t happen. Their is an argument to be made that there is no point in doing PSA tests for prostate cancer because if you look at the big picture, knowing that one has prostate cancer at any point does NOT in fact improve outcomes.

  They will never screen for a disease where the test gives too many false positives. Breast cancer screening on younger women is too problematic for that reason. The pay off isn’t big enough to do mammograms on 30 year olds and the false positive rate would cause tremendous stress to too many women, and people who would do fine without treatment may end up being harmed by the treatment. An argument against screening for autism in 12 months olds is that likely a number of them would be tortured, possibly to death by one of your precious DAN! quax, pD. Can’t you see the INFANTS getting methyl B12 shots? Actually, go check on the B12 quack’s website and you can see one. Also, some “behavioral” interventions delivered by some people are torture and it’s my belief that it’s better for a child not to be subjected to the wrong early intervention rather than none. Unless one is comparing absolute criminal neglect from the parents, in which case a high stress “early intervention” might be less problematic than extreme neglect. i.e. if you have to choose between the child sitting for 40 hours a week in a closet alone, and being abused with 40 hours a week of repetetive DTTs, it might be better to deal with the PTSD from the DTTs, but the middle ground would be to not abuse babies with “interventions” that are overly “intensive” because, after all, don’t you know that you have this rapidly closing window from which the brave parents and wise therapist can drag the child through if they grab the child early enough and pull hard enough they can get the child out of the dungeon of disablity, don’t you know? Ask Jenny McDumDum.

  So… what did we learn about “interventions” or “treatments” or just regular old “help” that would be offered to these newly “screened” autistic adults based on what “justthisguy” said?

  There usually is STINKING NOTHING available for autistic adults. So you would propose in some cases yanking people out of a life where they may or may not be helped by a diagnosis and forcing a diagnosis on them.

  How sweet.

  Now in the case of institutionalized people, they are already being “treated” and very possibly being “treated” badly with antipsychotics.

  I don’t know, but I would guess it would be ethical to give these people a proper dx so that their “caregivers” will stop treating them as if they are psychotic and start treating them as if they are autistic. Overall, I would think that would be good, though in some cases it could conceivably be “out of the frying pan and into the fire,” if, for example, there is sympathy for psychotics in some place, but disdain for autistics.

  Prisons might be a place where it might help to give proper diagnoses. Maybe confessions were extracted from an ASD person who was set up by bullies to take a fall. Maybe a lack of eye contact was seen as guilt by prosecutors….

  But right now, there are poor ASD adults who have been conned by the freaks selling the mercury/vaccine hypothesis. I have seen adults talk about how they need to be “casein free” (due to a self diagnosis of leaky gut or whatever (Wakefield’s nonsense) when in fact what they were describing is garden variety lactose intolerance. I have seen poor ASD adults victimized by DAN!/ARI quackery into thinking about getting heir amalgams removed!!!!

  It might be better to think of oneself as quirky or a social clod than to think that one needs to buy a $3000 dollar sauna and a $20,000 toy HBOT balloon and that one needs to move to another state to be near some quack who will offer daily IV chelation for a year and 100% (no money back) guarantee of a cure for autism/Asperger’s/PDD,nos.

  And believe me your DAN! quacks will be more than happy to take that money.

  I am not saying that studies shouldn’t be done on adults. I’ve been advocating for the benefit for some of getting proper diagnoses for a long time.

  But it’s one thing to think of an idealized situation where the adult is only liberated by the diagnosis (as can happen), it’s another to think of the adult losing his job, spouse, children, self-esteem, health, happiness because of a diagnosis.

  It’s one thing for a friend to say, “you might want to get checked out for Asperger’s” and letting the person take or leave the suggestion. It’s another thing for professionals to in a god-like way, bestow a permanent label on a person maybe even against his will.

  The whole thing needs to be approached from the idea of helping people not with the idea of, “oh, I gots this cool hypothesis based on my kid’s lab reports and the quasi-magical belief system of the biomeddlers.” Lets find people who might be autistic and take their blood and pop them in a scanner to satisfy our curiosity and bolster our pet hype-otheses. pD.

  OK? haha. Not OK! Not LOL. :-/ Not ROFL

• laurentius-rex
  May 10, 2008 at 5:02 pm

  Don’t forget what is behind this Government response however, it is the fact that the NAS have been running a campaign to show that autistic adults do exist, and are often isolated and ignored.

  The intention would be for the Government to recognise a realistic figure and allocate sufficient funding to that. They have every incentive to down play the figures because there is expenditure involved.

  To go back to the disability figures in Coventry, at the time the Social Services Department claimed that there were only a small number of significantly disabled people in need of services from them, and that they already knew who they all were. They were also an influence on the Planning Department and in there downplaying of the figures exerted a counter influence on the activities of the local access committee, who were monitoring and commenting on all the building applications submitted to the City. This was before the present Disability Discrimination Act and before there were the legal duties for access that now exist.

  The greater numbers did mean greater committment and expenditure and the current state of play is still a woeful underprovision (it is no wonder adult autistics hardly figure in this at all) But it was the independent work of organisations like the ones I was involved in up and down the country that eventually forced the legislation at least.

  It certainly did not happen overnight, and the work is not finished, but relatively disempowered and written off groups did gain something.

  All the arguments I have heard about autism I have heard before about other disabilities, as to where are they, and whether they were even capable of managing there own rights agenda.

  You might say we created a disability epidemic. No the people were always there but unrecognised ignored and often hidden.

  You know in the past certain groups of people were lucky to make it to adulthood at all, Down’s Syndrome, CP, Spina Bifida. There was euthanasia through the back door in inadequate and often unoffered medical care.

  Don’t you think some proportion of autistic adults from earlier in the last century never made it through to this one?

• Ms. Clark
  May 10, 2008 at 5:44 pm

  Sara Crider drowned in her own vomit while in an institution in the US and not that long ago.

  Greg Garness committed suicide and not that long ago.

  It would be good if the authorities interested in doing head counts of ASD adults would take part of the money and at least try to figure out how many autistic adults would be here now had they not been abused to death, neglected to death, outright murdered (like in their home or in their neighborhood), and who killed themselves.

  It would be good to catalog how many attempts the autistic adults had made to get services under whatever label and if they had never tried was it because they had a niche and didn’t need services from the gov’t or is it because they couldn’t figure out how to apply for services, or just couldn’t try to apply because of a lifetime of being kicked in the teeth for asking for anything.

  These are not generally people with an entitlement complex.

  I told Lee Grossman that the “tsunami” wasn’t a tidal wave of autistic kids becoming adults and needing services, as if this having a lot of autistic teens becoming adults is a new phenomenon. Theh “tsunami” is this massive batch of middle and upper class mostly white parents with a massive sense of entitlement. (See Rick Rollens, Lyndelle Redwood, Mark Blaxill, JB Handley, Katie Wright, Sallie Bernard, Portia Iversen, Jon Shestack and all the mercury dads who are also lawyers) Of course, the goal of these people has always been to get a kid cured before they become pre-teens, but lacking that they will be screaming to high heavens that someone better make sure their kid is well cared for (preferably outside of the parent’s home) on someone else’s tab where possible.

  For the uber entitled, their kid WILL get this and WILL get that or ELSE. Just of few of these people seem like a tsunami.

• Ms. Clark
  May 10, 2008 at 5:45 pm

  http://autismdiva.blogspot.com/2007/02/remembering-greg-garness-and-sarah.html

  Details on Sara Crider’s and Greg Garness’ deaths.

• H6
  May 10, 2008 at 6:10 pm

  If people with a sense of entitlement make things better for everyone with autism, then let’s say a prayer that more people have a sense of entitlement.

• Joseph
  May 10, 2008 at 6:28 pm

  If people with a sense of entitlement make things better for everyone with autism, then let’s say a prayer that more people have a sense of entitlement.

  And if I were Bill Gates, I’d have 50 billion dollars.

  What if those people with a sense of entitlement are making things worse for, yes, basically every autistic person?

  BTW, you completely ignored the evidence I posted again.

• H6
  May 10, 2008 at 6:49 pm

  Joseph,

  That’s proof that the missing adult cases of low-functioning autism that equal the number of cases of low-functioning autism in children have been found? This study shows there is no increase in the incidence of low-functioning autism?

  Am I missing your point?

• Ms. Clark
  May 10, 2008 at 7:08 pm

  People with a hyperinflated sense of entitlement don’t look out for anyone but themselves, at least that’s how it is on the planet I live on.

  You should see how the wealthy SoCal momz and dadz who seem to be slurping all the cream off the top of the DDS system here are making sure their Aspie kids get 40 hours a week of ABA at age 10, and that little Biff or little Binxy gets “hippotherapy” and summer camp and mom ge’s her kitchen remodeled (to keep junior out of the food) on the taxpayer tab, when in many cases the parents could afford to pay for these goodies themselves, but have found a way to get it for FREE or by only having to pay for a small portion of it. While simultaneously hundreds of NorCal and Central Cal kids (particularly ones who don’t have a Masters degree or PhD or JD in the immediate family or having inherited wealth…) that would be many of the non-white families and lots of less than wealthy white families are shut out of services altogether or told they need to fight, “Go get a lawyer and we’ll think about talking to you…”

  So no, the entitled are not interested in “sharing the wealth.” When I have pointed out this disparity to one SoCal double-cream slurper she said essentially, “If they can’t find bread, let them eat cake!”

  She got very upset that I might be suggesting it was time for the SoCal piggies stop hogging all the goodies at the trough. She knew that sharing meant that they’d get much, much less and she got really angry about it.

  How dare I suggest that grubby little poor kids get a portion of something that she and her child is taking for granted.

  These people talk a big show about how important early intervention is, but they’d rather their 12 year old Aspie get his goodies than let an 4 year old PDD,nos kid upstate get any services or even a diagnosis. In their world view that condemns little Juanita to a life in an institution!! A lifetime of being a tax sucking burden! Haven’t you heard?

  The uber entitled don’t care. They don’t care. They don’t care.

  It’s all about them. It’s typical moneyed SoCal “I am the center of the universe” narcissism.

• Joseph
  May 10, 2008 at 7:15 pm

  That’s proof that the missing adult cases of low-functioning autism that equal the number of cases of low-functioning autism in children have been found? This study shows there is no increase in the incidence of low-functioning autism?

  Am I missing your point?

  H6, here’s what you said: “The problem may be that once one learns about low-functioning autism and what it is, one is surprised by the fact that there is not more of it in adults.” Do you still think that there’s not a lot of it in adults? On what basis?

  Do you even know the current prevalence of low-functioning autism in children? Note: I’m not asking for the prevalence of autistic disorder vs. PDD-NOS vs. Asperger’s. This is a completely different question, i.e. prevalence of autism with intellectual disability.

  Here’s a hint. In California, today, the exact numbers are not known, but there can’t be any more than 10 in 10,000 (0.1%) children registered with CDDS who are both classified as autistic and as having some form of mental retardation.

  Now, consider that about 3% of the population scores below 70 in IQ tests. This is just how IQ distributes. Granted, this subset of the population is not equivalent to the adult population in mental handicap hospitals, for various reasons. Maybe about 1% are classified as truly having MR, and only a subset live in state hospitals. But think about it. If they find that about 2 out of 5 of the people in mental handicap hospitals appear to be both autistic and intellectually disabled, does it look to you like low-functioning autism would be rare?

  Do you want more evidence?

• passionlessDrone
  May 10, 2008 at 7:25 pm

  Hi Ms Clark -

  Whew! That was quite the diatribe! If you find me so ridiculous, it is difficult to understand why you would write such a lengthy post back to me. If I was accused of being off topic by Sullivan, what the heck was that?

  What I proposed had nothing to do with making additional diagnosis, but rather, just getting more information. The biomarkers we currently have are not surefire indicators of autism in any case, so why assume that peoples lives are going to be ruined?

  “If you were educated in the least in the ethics of “screening” for any disease/disorder/problem/whatever it is widely understood that you do NOT screen for conditions, no matter how heinous, if there is no treatment available.”

  The AAP recently recommended that every single child in the United States be screened for autism by age two. Maybe you should give them a refresher on ethics.

  “In other words, they will never screen for an incurable diseae. Won’t happen. ”

  What about HIV?

  In any case, I wasn’t talking about screening for the diagnosis of autism, but instead, the physiological markers of autism. Further, I’d acknowledge it is entirely possible to have some of these without having autism; but then again, my suggestion was about getting broad outlines, which is still useful.

  By way of example, say 1 in 500 children has full blown autism, and not aspergers / pdd; and that only full blown autism has microglial activation found by Vargas. (I’m just making up here, but I’m pretty sure Vargas included only those with full out autism. (?)). Then, try a post mortem analysis of various populations, MR, schizophrenia, ‘normal’, and see how frequent glial activation is. If we find it at only one in 1000, or one in 10000, we might start to think what we are experiencing is a new phenomena. If I understand correctly, California has been storing cord blood from a lot of births (1 in 7?) for quite some time; and that previous research has found a remarkably strong correlation between some elements in the blood and a future diagnosis of autism. Why not go back twenty years, blindly and randomly sample a large number of samples and see if prevalance of BDNF increases over time? The details of this of the above off cuff proposals are unimportant; the value is in that we can identify trends based on these kinds of readings. More information.

  Expensive? Sure.

  As for the rest, I honestly have no answers. You have taken the ball and run with it, but to where, and why, I cannot guess.

  You’ve got some issues to work out that go much deeper than an opposition to using physiological markers to determine if such markers exist at similar levels in todays children than the children of forty years ago. If letting something like that out makes you feel better, then go for it.

  - pD

• passionlessDrone
  May 10, 2008 at 7:50 pm

  Hi Sullivan -

  “If one then wants to go back and see if the biomarkers are different amongst these two groups, it might make some sense. To do it before having an idea of which individuals might be autistic is putting he cart well before the horse.”

  The underlying assumption in your argument is that a large percentage of those with schizophrenia will also have autism. My assumption is that they will not. What is to keep us from getting guidance towards the ‘right’ answer from searching for chemical profiles?

  By way of example, in a study of one hundred children with autism, nineteen of them were found to have cholesterol levels in the bottom five percent for two year olds. If the autism of yesterday was given a diagnosis of schizophrenia, shouldn’t we be able to find similar percentages of people with low levels of cholesterol in people with a diagnosis of schizophrenia? Cholesterol levels may, of course, be affected by eating habits, but other profiles could be identified. Or perhaps stored blood could be used as a sampling store.

  It wouldn’t have to be all or nothing (and likely wouldn’t be); just a better picture.

  “A clearer measure would be to test adult autistics without schizophrenia diagnoses. Unless, that is, you are proposing that these biomarkers are (a) very generalized to the entire autistic population or (b) a marker of children who will grow into adult autistics with schizophrenia. Somehow, I doubt that is your intent.”

  My intent was to describe a mechanism by which we might be able to see if physiological indicators found in autism exist in the older population at the same rate as the younger population. This is one way we could get more information towards the question at hand; are there as many autistic adults as there are autistic children?

  Make sense?

  - pD

• Joseph
  May 10, 2008 at 8:10 pm

  If the autism of yesterday was given a diagnosis of schizophrenia, shouldn’t we be able to find similar percentages of people with low levels of cholesterol in people with a diagnosis of schizophrenia?

  No. I’d give a rough estimate that only about 15% of adults with schizophrenia are really autistic. (I could go into details as to how I determine that). You might find similar percentages in the populations with OCD, Bipolar, ADHD and speech disorders. You’ll find most autistics in the population with mental retardation, and in the population at large.

  So if 15% of the adults with schizophrenia have a 19% prevalence of low cholesterol, will we detect an effect? The math doesn’t look promising.

  Furthermore, what if schizophrenics as a group have high cholesterol? What if non-autistic schizophrenics have low cholesterol as well? We would’ve proven nothing.

  Frankly, this methodology does not appear valid to me. The results, whatever they are, would be easily challenged.

• Justthisguy
  May 10, 2008 at 8:37 pm

  Wow, I cringe at reading the Sarah Crider thing again. I have a cousin whose roommate, companion, whatever, is and has been an Official Person at Georgia Regional Whatever They Call It, These Days.

  Haven’t spoken to either of them in a few years, for other angry familial reasons….

• Ms. Clark
  May 10, 2008 at 9:36 pm

  pD,

  The topic of this blog entry was not, “lets find “cool biomarkers!!!” or “let’s exploit suspected biomarkers in research on adults!!”

  The topic is going out and identifying autistic adults and you took the ball and ran with it way off topic. I’m trying to respond not just to you, but to all the putrid assumptions that DAN!/ARI, Bernie Rimland, David Kirby, Rick Rollens, Mark Blaxill and the rest of the biomuddled. These putrid assumptions are that there are very few autistic adults. If there are very few then no on needs to develop programs to help them. And in fact because of these jerks screaming “epidemic” for the past 6 or 7 years they may have set back programs that might otherwise have been developed to help auitstics. Every stinking politician allied with your friends at DAN!, pD, is screaming and whining about a tidal wave of destruction coming their way. Well, if the rate is “high and stable” as the evidence points to, then all you have to do is look at the “success stories” of any “type” of autistics and use them to plan for any kids’ future. If the rate is high and stable instead of all this pathetic hand wringing, “What’ll we do??? What’ll we do??? This massive wall of monstrous soulless beast children are about to hit adulthood and destroy our economy beyond recognition!!!!” what folks could be doing is using the autistic adult (survivors) to “practice” on. Which kind of housing works best for adults with PDD,nos plus ____ (depression, anxiety, dyslexia, hyperacusis….). Hint: leaving an autistic adult without services and “letting” them live under a bridge as a homeless person is PROBABLY not idea.

  Asking the right questions with the right attitude about the adults living now (or 7 years ago) would have been a win-win situation. Which kinds of jobs work best for autistics? Well, guess what there’s a whole bunch of currently diagnosed ASD people they could study. You don’t even NEED to go count every last one to assume they are out there or to help the ones we have now… and like I said, for the few self-serving or greedy parents of little kids, it’s a win for them because the “bugs” could get ironed out they wouldn’t be trying out different programs on your kid!

  I wrote:
  “If you were educated in the least in the ethics of “screening” for any disease/disorder/problem/whatever [then you would know that] it is widely understood that you do NOT screen for conditions, no matter how heinous, if there is no treatment available.”

  Your response was:
  “The AAP recently recommended that every single child in the United States be screened for autism by age two. Maybe you should give them a refresher on ethics.”

  “Totally weird” hardly begins to describe this statement.

  There IS H.E.L.P for two year olds. Say this slowly many a few times: “There is help offered for two year olds.”

  Isn’t there???????????????

  Yeeeeeees, there is. All kinds of things, good and bad are offered for 2 year olds, much of it for FREE.

  And the AAP wouldn’t be screening for ASDs in 2 year olds if there was no H.E.L.P. available for them. See how that works?

  Is there autism specific help available for 40 year olds????????

  Most of the time the answer is, NO. NO. and NO.

  You also quote me:
  “In other words, they will never screen for an incurable disea[s]e. Won’t happen. ”

  And droned:
  What about HIV?

  Do they do population screening for HIV in situations where there is no help available? I don’t think so, deary. There is treatment available for HIV. If some outfit is screening for HIV (and I’m a tad out of the loop here, how often is that done? Is it required for entrance into college? Is it required for a marriage license?) then they aren’t “screening” all people on their death beds with massive infections. “Screening” deary would be done in populations where there would be treatment (say it slowly with me now) a v a i l a b le. That’s right, they might screen people for whome treatment would be available. Or possibly so that the person could avoid infecting others. But you would do it just for the heck of telling people that they have a fatal illness.

  It’s bizarre. Your reaction makes it look like you think I’m making this stuff up.

  You acted like I made up the rule about not “inflicting unintentional insight” on people. I’m sorry you are so uninformed about human-subjects research ethics, but that doesn’t make me wrong. It makes you uniformed.

  You added:
  “In any case, I wasn’t talking about screening for the diagnosis of autism, but instead, the physiological markers of autism. Further, I’d acknowledge it is entirely possible to have some of these without having autism; but then again, my suggestion was about getting broad outlines, which is still useful.”

  How about we start with the assumption that autistic health can change over time. How about we admit that currently dx’d autistic adults aren’t clamoring to have their “guts” “healed” or have their “yeastiness” dealt with, or begging for a cure for their “methylation”. They aren’t sobbing at night because no one understands their need for camels milk or Valtrex. They aren’t craving to have someone to discuss their aggravating neuorglial activation with.

  They need help with stuff like cooking, shopping, transportation, recreation…. oh little things like respect from autism orgs… not being described as walking monsters about the destroy economies… that sort of thing.

  These are bigger priorities, aren’t they? Or do you even “care”?

• Ms. Clark
  May 10, 2008 at 9:57 pm

  I left out the “n’t” off of “would” in this sentence:

  “But you would[n’t] do it just for the heck of telling people that they have a fatal illness.”

  Meaning, public health people don’t screen just to tell people that they are going to die of something in particular. It’s not done.

• Justthisguy
  May 10, 2008 at 10:08 pm

  Chill, Camille. Yer getting too exercised, here, to keep a cool head.

  I speak as your drunken heathen lapsed-Methodist well-wisher.

• Ms. Clark
  May 10, 2008 at 10:56 pm

  Chilling.

• Kristina Chew, PhD
  May 10, 2008 at 11:31 pm

  I’m grateful for this discussion. Understanding, knowing that there’s a lot more autism out there among older individuals has helped me understand many friends, relatives, and colleagues, and all for the better.

  Even if the “stigma” about children being autistic has lessened, it seems we have a long, long way to go before this being lifted for adults.

• mayfly
  May 11, 2008 at 1:01 am

  A few weeks ago I posted numbers from a study of deaths of autistics in California. There was no evidence that they are being killed in numbers. I’m not saying this never happens, but I do say it is too rare to be of significance.

• Ms. Clark
  May 11, 2008 at 2:30 am

  Thank you, Kristina for being patient with me as I lost my patience.

  Mayfly I don’t think I’ve read the paper you are talking about or read about it.
  Did they talk about deaths in, say, 1945 in institutions? Deaths in 1945 of people who would otherwise be alive today, say if they had not been put in an institution … exposed to a bunch of communicable diseases or otherwise abused to death? The old time “State Schools” here could be not much better than what we think of when we hear “Romanian orphanages”.

  There were no doubt loads of autistics who died in institutions under the label of “mentally retarded.” Go read about Larry Bissonette. He would have been thought of as retarded by most people and had he died when he was in an institution, he probably would have been counted as an MR person if they ever even counted the deaths of people in those institutions.

  I realize that “holocaust” has a particular meaning and it’s not good to throw it around, but if you go back and look at how the disabled and mentally ill have been treated (and are treated now in institutions in the US and in some “neighborhood care homes” it’s not so pretty. And I suppose if the disabled were seen as an ethnic minority their deaths might add up to something like an “ethnic cleansing.”

  I had a good friend who was profoundly retarded and as far as I can tell, undiagnosed autistic (Frag X), die while in the care of a care home. They didn’t kill him, not outright anyway. But it looks like the system killed him. He didn’t get adequate medical care, in my opinion and I think this led to his death in his late 30’s.

  Lots of people died the way Sara Crider died. And probably some have been killed with drugs deliberately and had their deaths reported as accidents or natural causes.

  Plus, with so many autism spectrum adults either passing for “quirky” to people who don’t know them well, or misdiagnosed as mentally ill or retarded, how would anyone know how many “autism spectrum” people have died prematurely since say, 1945?

  However many there are who died prematurely, they wouldn’t be answering the door in a canvass of a neighborhood and they wouldn’t show up for any research at all no matter what compensation was offered because, …. they are dead. I just want that to be taken into account to whatever extent that is possible.

  The story of Greg Garness is particularly odd since he was diagnosed by the autism brain bank people, shortly after he was dead of suicide, and his parents had no clue until about the time he died that he was on the spectrum. (The brain bank people wanted his brain and I think I found where he showed up in an autism research paper listed as a man of the right age who had died of a gunshot wound.) His parents might have thought of him as stubborn or as having a learning disability, or socially inept, I don’t know, but they didn’t think of him as being on the spectrum before he died.

  How many homeless people die under a bridge or in an alley somewhere without a diagnosis? How many autistic people are thought of as schizophrenic because they talk to themselves (as opposed to talking to the voices in their heads)? Every time I see a homeless-looking person walking along muttering, I have to wonder, what’s that about? Autism, drug abuse, or sz?

• passionlessDrone
  May 11, 2008 at 12:37 pm

  Hi Joseph -

  “Furthermore, what if schizophrenics as a group have high cholesterol? What if non-autistic schizophrenics have low cholesterol as well? We would’ve proven nothing. ”

  If schizophrenics have low, high, or normal cholesterol could easily be determined, could it not?

  The point is we are rapidly accumulating a wealth of knowledge of the biological profiles of a number of disorders. You are worrying about the details of a particular idea, as opposed to the value of the wealth of clinical analysis currently be generated.

  What about BDNF, glial activation, ammonia, lactic acid, carnitine, magnesium, glutamate, lipid peroxidation, oxidative stress, or plenty of other values? We could easily, easily conduct a study to evaluate some of these values in smaller populations that have only one diagnosis and determine if there were overlaps; i.e., , schizophrenia has ‘normal’ values of carnitine, autism does not. At this point, larger studies could be made. You make it sound as if this is an impossible task to undertake; I think it is just a matter of taking small steps, and aggregating the results.

  While we disagree, almost always, I do appreciate your cordiality.

  - pD

• Cliff
  May 11, 2008 at 12:45 pm

  “The point is we are rapidly accumulating a wealth of knowledge of the biological profiles of a number of disorders. You are worrying about the details of a particular idea, as opposed to the value of the wealth of clinical analysis currently be generated.”

  Just a note; it probably is good to know if the logical value of the surrounding idea is consistent before attempting to make the factoids to which it might apply relevant.

  Cliff

• laurentius-rex
  May 11, 2008 at 1:21 pm

  Actually research is showing us none of that, what it is showing is an increasingly larger number of inconsistent studies each demonstrating the errors of accumulation consistent with small studies where it only takes two of a kind to significantly skew the study into thinking all arthritics are redheads if you catch my drift.

  There are no bio markers of the kind that Passionless drone wants to see of necessity in order to prove a point. The reasoning is entirely backwards. We should not presume that current nosologies are correct when the evidence is accumulating towards the contrary assumption.

• passionlessDrone
  May 11, 2008 at 2:49 pm

  Hi Laurentis Rex -

  I’m not sure I am getting your drift; are you arguing that the studies finding different chemical profiles in autism are inaccurate? Could you provide some examples?

  What about studies wherein changes of levels of chemicals have been shown to correlate with severity of autism?

  I am also not sure why you feel my reasoning is entirely backwards.

  I am asking genuine questions.

  - pD

• passionlessDrone
  May 11, 2008 at 2:53 pm

  Hi Cliff -

  “Just a note; it probably is good to know if the logical value of the surrounding idea is consistent before attempting to make the factoids to which it might apply relevant. ”

  Hm. I am confused yet again. Do you feel that the surrounding idea I have proposed has no logical value? If so, can you elaborate as to why?

  - pD

• Cliff
  May 11, 2008 at 2:58 pm

  In asking that question, Joseph effectively was questioning whether having any specific biomarker (using the value of cholesterol as an example) would necessarily connotate anything about the conditional terms and status of the diagnosis over time. By effectively saying that “you’re worrying about a particular idea as opposed to looking at the wealth of clinical analysis” (presumably based off of biomarkers), you’re effectively begging the question that was literally just raised.

  Cliff

• laurentius-rex
  May 11, 2008 at 4:01 pm

  Do you think I have time to do your work for you, biochemistry is not my line of research, neuorology is not even my main line of research, the interelationship between cognitive neursoscience and education in autism is. (it is cognitive theries that inform my working hypothesis) I would have to trawl through hundreds of abstracts and notifications I have on my computer to do that.

  I am merely noting that the vast majority of studies which I have been alerted to and seen (and that is a lot) have what you might call opportunity samples, and small ones at that, so that there is no real statistical way of showing whether these represent a subset of a larger population or entirely diverse populations, or no population at all (random) It does not take long to scan a study and determine potential errors.

  The only way to really sort out one condition from another is to catologue every potential biological marker in a very large population, and sift them into groups (the mathematics are huge) then to see if these groups fit into any outwardly observable similarities or not without having any preconceptions that the similarities fit any existing pattern that has been named (in essence a value free blind study)

  A form of grounded theory in effect.

  There is a problem in assuming that any particular disorder in DSM is discrete or multifactorial or indeed whether it contains very distinct and seperate populations under the same heading.

  Its like the problems of using genetics to demonstrate racial characteristics, the degree of difference in any supposed racial grouping is greater than the similarities.

  I have written a paper about the risks of assuming there is even such an entity as autism before presuming that you can argue from what you have already decided is the entity, what it consists of.

  It is like saying this is a tin of beans, therefore anything I find within are beans, when for all you know despite of the arbitrary lable it might contain other pulses and even nuts.

  I have submitted my paper to the DSMV process and I hope to have it published eventually. You will have to wait like everyone else for peer review to take it’s course if I do this properly.

  Why not email David Amaral and ask him the same question and see if you get any more of an answer from him. I am telling you to do your own work and to learn how to read studies properly and critically evaluate them instead of merely deciding whether they fit in with what you think you already know.

• Joseph
  May 11, 2008 at 4:23 pm

  If schizophrenics have low, high, or normal cholesterol could easily be determined, could it not?

  I don’t think you got what the issues are, pD.

  Let’s say we find that schizophrenics as a group have low cholesterol? Isn’t that what you were expecting to find in the first place with your proposed methodology? Did that prove schizophrenics are autistic? Not in the least.

  Let’s say we find that they have high cholesterol. Congratulations; you’ve found something about schizophrenia. Does it tell us whether a subset of schizophrenics are autistic? Not in the least.

• Joseph
  May 11, 2008 at 4:38 pm

  If we were to find that autistics and schizophrenics have exactly the same biomarkers, they yes, maybe you would’ve found something of interest.

  But that’s not gonna happen. It just won’t. Whenever you compare groups of people classified by different means, you’ll find biological differences; be it comparisons of males vs. females or comparisons of people of different ages, or comparisons of people diagnosed with different so-called mental disorders.

  The point is that, whatever the findings, they really tell us nothing on whether schizophrenia and autism overlap.

• laurentius-rex
  May 11, 2008 at 4:53 pm

  Well in the old days of London transport it may well have been the case (given the differential statistics of heart attack) that bus drivers had higher cholesterol than bus conductors.

  Does this mean that they were distinct orders of human being with different biochemistry, or does lifestyle and excercise have something to do with it.

  You can’t say that a biochemical marker causes anything or whether it is the byproduct of some other process.

  If you were to suppose that a cholesterol test were all that were needed to seperate out which of a sample of LT workers were conductors and which drivers, you might find a significant number of false positives and negatives where other lifestyle factors, such as smoking and drinking impinge upon excercise, notwithstanding some drivers may well have been part time athletes. Indeed would a sample of bus drivers be substantially different from taxi drivers, who we know to have different brains, again not knowing whether it is this greater mnemonic capacity that predisposes them to learning the knowlege, or whether the knowlege is what causes that uneven development in the brain.

• H6
  May 11, 2008 at 8:37 pm

  pD,

  You’re probably going to have to take a course in sophistry before you can win these debates.

• Joseph
  May 11, 2008 at 9:40 pm

  No, all pD has to do is demonstrate (perhaps with some math and an example) that by means of biological testing it is feasible to produce evidence that autism and schizophrenia overlap or don’t overlap.

  I just don’t see it. To repeat myself, whatever the findings, in whatever direction they may be, they would be evidence of nothing (except in the unlikely case the markers are found to be identical in both groups).

• Cliff
  May 11, 2008 at 9:48 pm

  Even if you find identical biomarkers, there are issues as to the causation of those biomarkers, because you’d have to establish that they were because of factors that were independent of something externally circumstantial that informed both the schizophrenic and autistic experiences, respectively.

  Cliff

• Joseph
  May 11, 2008 at 9:57 pm

  To further illustrate the point, this paper says that suicidal persons with delusional disorder have low cholesterol. Is this evidence that suicidal persons with delusional disorder are autistic? Is it evidence that autistic persons are suicidal and delusional? Not in the least. The proper way to tell if there’s overlap is, clearly