The Age (Cohort) of Autism

By Neuroskeptic | January 20, 2012 6:31 pm

New data shed light on the recent mysterious rise in the number of kids being diagnosed with autism.

The new research doesn’t explain the increase, but it tells us more about it. It shows that the rise in Californian autism diagnoses (reported to the state DDS) over the period 1996 to 2005 was a cohort effect, meaning that the rates of diagnosis have got higher, the later a child was born.

A child who’s 10 today (born 2002) has double of the chance of having a recorded diagnosis compared to a 14-year-old born just four years earlier, in 1998.

“That doesn’t tell us anything new!” you might object (I did at first). “All that means is that rates have risen, and we knew that already”. But actually it does tell us something important. Because the data could have turned out differently; rates could have risen without a cohort effect, if, in recent years, lots of diagnoses were being handed to children regardless of their age.

That didn’t happen. Almost all children in California who get a diagnosis, get it at age 3 or 4. In more recent years, the average age at diagnosis actually fell slightly. The peak used to be age 4, it’s now 3.

So it’s not that children in general have been getting diagnosed with autism more. It’s that young children are getting diagnosed more; children aren’t being diagnosed “retrospectively”, as it were.

Another interesting finding is that the rise in rates of ‘high-functioning’ autism has been much bigger than the rise in low-functioning autism (i.e. autism alongside intellectual disability), although that has risen as well. Edit: but note that their defintion of ‘functioning’ is rather unique; see the comments.

So what does this mean?

These data are consistent with various interpretations. It could be that rates of autism have really risen in California over this time period. But it could also be that people are getting more likely to detect and diagnose it – in young children.

ResearchBlogging.orgKeyes, K., Susser, E., Cheslack-Postava, K., Fountain, C., Liu, K., and Bearman, P. (2011). Cohort effects explain the increase in autism diagnosis among children born from 1992 to 2003 in California International Journal of Epidemiology DOI: 10.1093/ije/dyr193

CATEGORIZED UNDER: autism, history, mental health, papers
  • Ivana Fulli MD

    There is an interesting local Californian journalist work on that subject of increasing in children diagnosed with autism in california as a sure way to get publicly funded services for one's child learning problems with a cultural emphasis on pre'cocious interventions:,0,1218038.htmlstory

    I cite:
    //A driving factor is that parents, physicians and educators have become intent on identifying it as early as age 2, in the hopes of diminishing its symptoms through treatments that are now widely available.


    “It used to be that autism was the diagnosis of last resort,” (…) “Nobody wanted it. Now it is seen as preferential.”(…)
    Indeed, some parents pursue it doggedly — even in court — because it can open the door to publicly funded services.//

  • Paul Whiteley

    Debates on the possible reasons for the increase (in prevalence and incidence) of autism spectrum conditions has been one of the most 'lively' in all of psychiatry in recent years.

    I note the recent Nature series ( on autism came to the very 'rough' conclusion that whilst issues such as diagnostic substitution, better awareness and perhaps a greater willingness to diagnose autism featured among the possible explanations, there was still a bit of gap to explain just under half of the increase in cases.

    Outside of just looking at California, there are also a few other interesting places with data. So Taiwan was discussed here: (noting the younger age group data) and Utah (which has been keeping some excellent records of numbers of autism cases) is discussed here: (sorry for the blatant link to my blog!)

    What this and other data suggest is that yes, there is an increase and it does seem to be spread across different sites – but let's not get too fixated on 3 or 4 factors 'causing the increase' when for all we know, more local/regional factors might also be involved.

    Finally (!) just to complicate matters further, there was an excellent abstract at IMFAR last year calculating autism diagnoses across the DSMs:
    It will be interesting to see where the proposed DSM-V revisions feature in subsequent analyses.

  • deevybee

    This epidemiological study of autism in adults has a particularly interesting take on this question -and comes to similar conclusions.
    Brugha, T. S.,et al (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Arch Gen Psychiatry, 68(5), 459-465. doi: 10.1001/archgenpsychiatry.2011.38

  • Anonymous

    Is there a financial advantage to having your child diagnosed with autism?

    A good friend of mine has a very bright and articulate child who has been diagnosed as being “on the spectrum” but the child appears perfectly normal to me and I interact with the child for about 3 hours/week. I worry about the child's parents acceptance of this diagnosis and the effect (which is very obvious) that this acceptance has upon their interaction with their child.

    I am no expert but something seems amiss.

  • petrossa

    How about getting the definition right first? Is Autism someone who 'succeeds' at the autism test or is it someone who has been demonstrated to have neurological anomalies common to real Autism?

    Because if its the first its no surprise there is a rise, since the syndrome is badly defined half the population could be fitted in given the 'right way' of diagnosis.

    Evidently any research based on a polluted database is worthless.

  • Jon Brock

    Like you, my initial reaction was “meh”. But if I understand you correctly, the data suggest that the main finding is an increase in diagnosis of “high functioning” autism in 3- to 4-year-olds. Which is actually pretty informative.

    Not so long ago, only the most severe cases would be diagnosed at this age, with higher functioning kids really only being picked up once they got to school. So these findings are consistent with the idea that we're getting better at picking up higher functioning kids earlier on.

    They also indicate that the increase in diagnoses is not being driven by infant vaccines leading to regression into severe autism. Although I'm sure Age of Autism will manage to find a “positive” spin on these findings.

    It's also worth noting that the ADI-R which, for better or worse, is considered the gold standard of autism diagnosis, focuses on the child's behaviour at age 3 and 4 – even if the child is much older at the time of the diagnosis. I'm not smart enough to work out whether that's actually relevant here…

  • Michelle Dawson

    Bearman uses a novel definition of and measure for level of functioning in autism. This doesn't involve any measure of intelligence.

    So he does not provide data about rates of autism in autistics who are or aren't intellectually disabled (by any citeria).

  • Jan Henderson

    What do you make of study published in June in Journal of Autism and Developmental Disorders that ties increase in autism to high tech parents (in California and Netherlands)?

    “Autism is highly heritable — meaning, it runs in families — and has a strong genetic component related to a trait called “systemizing,” which is a skill for analyzing how systems work and creating them. Workers in high-tech industries — engineering and computing, for example — tend to excel at systemizing.”

    Article in US News at

  • Ivana Fulli MD


    Pr Traolach (terry) Brugha-an academic psychiatrist from Leicester University did for the first time I believe- a census of autistic adults in England and concluded that autism has not been rising in the last decades.

    It was published in one of the world top journal for psychiatry.

    You dare to write about this Pr Brugha Arch of Psy study:

    //This epidemiological study of autism in adults has a particularly interesting take on this question -and comes to similar conclusions.//

    -when the paper neuroskeptic discussed in that post exposed a sharp increase of dignosis of autism in early childhood.

    I heard Pr Brugha lecturing at leisure about this research of his-precisely from 9.40 am to 10.25 am on the 10th of Nov 2011 in his very articulate and bright if unassuming at the same time way of his-

    and he distributed printed copy of his PowerPoint who says:

    “” If the prevalence of ASD has not changed in the past 70+ year, this suggest that the environmental causes cannot include newly emerging noxious factors.””

    NB:Of course one can disagree with the suggestion and think that may be some causal factors might have been suppressed and replaced by others but my point is that Pr Brugha work showed no increase in autisms cases in adult in England according to his conclusions and an academic psychologist has no right to misunderstand his datas clearly exposed in the papaer and conclusions.

    You are a psychologist working with statistics and it is not the first time that you showed yourself able to take your wishes for fatcs. I am a nobody but it didn't prevent me to be sad that an academic dare to take the DSQM5 proposals about autism spectrum not only as a done thing as far as the DSM business is concerned but as an argument of authority. Shame on you for writing:

    PS: I had no illusion about your abilities to fool yourself and be proud of it since you also dare to write to a fellow academic

    –reproducing proudly the mailing conversation in your blog-

    “”(…)because I had failed to distinguish ASD and autism. I trust the DSM5 document has clarified the point for you and you now accept this was not misrepresentation.(…)””

    You were using as an argument of authority against a reasonable reproach of lacking scientific rogor from a fellow academic the DSM 5 ludicrous proposal about autism spectrum-

    gladly ignoring the fact that the DSM 5 proposal is still a proposal only and that people minded like you have produced the stuff out of voting in political committee when the APA -who makes the money for the books- invited you in luxiousrious hotels may be.

    Pere Petrossa reamrk has a strong weight to my mind and I would like clever aspies like Petrossa a working on the DSM proposal.

  • Neuroskeptic

    Michelle: Thanks, you're absolutely right, I completely missed that.

    What they mean by “functioning” is:
    As in our previous studies, we derived a ‘functioning’ score from a global index of function on two dimensions relevant to autism: social interaction, and communication and language, both recorded on the CDER at the time f intake. These scores were created from evaluations by developmental specialists based on observation and caregiver reports…

    As you point out it's nothing to do with IQ.

    So what this really means is that over time, the average “severity” of autism in California has fallen, not the IQ has risen.

  • Ivana Fulli MD

    Anonymous 20 January 2012 20:55

    You asked: “Is there a financial advantage to having your child diagnosed with autism?”

    The answer is absolutly yes if the autistic child had problems with speach or schooling as the Los Angeles times article showed.

    In France it is rare for parents not to encounter psychonalyst psychiatrists in charge of the autistic children diagnostic and treatment
    and only the rich ones can pay for ABA and TEACH or other working methods:

    You worry about the consequences of the diagnostic -and may be rightly so I just do not know the case and cannot rule out that the child may be just slightly dyslexic and bad mannered anbd bad tempered and the parents have gotten a diagnostic to get speach therapy for free-

    but otherwise the child might have got a proper support at scholl and in the home from parents knowing him better and might escape antipsychotic medications and being wrongly labeled bipolar or schizophrenic or whatever for an autistc attitude to changes and overstimulation and autistic meltdowns and bad temper.

    NB: I am an adult psychiatrist and think that even for an adult asperger person it is a mixed blessing to be able to use the diagnostic because of prejudices and you have to help, inform, discuss and let the client choose who to tell and when.

    To my mind disclosure is a tool with advantages and disadvantages and your attitude is just an illustration that even good minded friends might be critical and need a lot of explanations -unless the child has been misdiagnosed of course.

  • petrossa

    I beg to differ Ivana

    There is not much benefit to be gained from a diagnosis for Aspergers. In fact it is financial suicide.

    To observe full disclosure, for example when applying for a job, you are obligated to mention you have a psychiatric condition.

    I give you 1 guess how that influences your future employment…..

    Yep, a broom and a pail walking the city streets, or of you are lucky a job in city park maintenance.

  • Ivana Fulli MD


    Sorry if I was not clear enough: I do not think that disclosure about autism on the workplace is always the right decision.

    To my mind it depends on the circomstances and the need for support to find and keep work and disclosure has not to be open to all in the work place.

    Disclosure is a tool you might choose to do without or at least for some times. It is not a magic bullet but it can provide some protection from bullying (up to a point I agree) and also from mismanagment of a very good and hard working aspie.

    Here on the comments makers of that post we had the priviledge to learn from you “petrossa” an aspie who made a good leaving as an analyst without disclosure

    and from Michelle Dawson who is also a very high functionninhg autistic person who produces very good research and very needed research challenging some “autistic dogmas” thanks to disclosure and the chance to met Pr Laurent Mottron (French born but carreer in canada)without any master or graduate degree of any sort if my knowledge is up to date.

    Two very bright persons with autism and Michelle Dawson who might have been all her life in a boring job without disclosure.What a pity for science and society!

    The Nat Autistic Society (the nation being GB) organized a very informative conference on work issue and a top firm excecutive went to say that their best performer employee of the year in the legal department was an aspie on a protected job.An aspie working at British telecom challenged her bosses and got personnal benefits and benefits for others.

    PS: The Pr Brugha epidemiological study on adult autisms in England – who need to be replicated of course- found:I cite his Power point of his 10 of Nov 2011 lecture on his findings:

    “A typical adult with ASD is less well educated, unrecognized by health or social care, in poorer housing, living either with family or alone(unmarried), economically disadvantaged(although more than expected were in pais emploument). “

  • Ivana Fulli MD


    Thanks for putting a needed pinch of salt to the issue of disclosure of autism on the work place. Your point has to be taken into account by each aspie thinking of disclosure.

    You told us you were a good analyst and you get the retirment of your choice where you choose.

    But some aspies just cannot find the job their diplomas and motivation should make reacheable.

    Some quit one job after the other in a hurry because they are bullied and/or because they were asked -by sheer ignorance- to adapt briskly to changes of schedule or whatever.

    And cherry on the cake, without disclosure Michelle Lawson would not be now one of the most interesting and good researcher in autism.

  • Ivana Fulli MD

    On the New York times an article about what happens in France when a documentary film maker asked politely psychoanalysts to speak about their sadistic and unscientific views about bad mothers being responsible for autism in their children: three of the ludicrous speakers on that documentary went to court to ask for a judge confiscating the documentary work:

    -one psychoanalyst shows a plastic crocodile mouth to figure out the bad mother and put a pencil to block the crocodile mouth to explain the good and dramatic cure effect of her psychoanalytic treatment on autism children (NB beware that this one psychoanalyst on the documentary looks a little like Dr Norma Wing MD, FRCPsych, but DR Norma Wing knows how to dress and has still more brain that many a young researchers on autisms), another psychoanalyst and civil servant on the payroll of the French research institution explain that it takes him a lot of courage to empty his mind and sit beside an autistic child and do nothing -absolutely nothing – and expecting nothing from it although he gets a salary for it from the French state ; another explain very proudly that incest between father and daughter produces just rather stupid girls –nothing really to worry about according to her when incest between mother and a son produce an autistic son. See for yourself (English subtitles) and note that neuroskeptic himself wrote already that the documentary was really worth viewing following that latter link.

  • Ivana Fulli MD

    Daniel Fasquelle a French MP has ask the French legislators to prohibit psychoanalysis treatment of autism and a big shot in research politics who made my life hell when he was advisor to the minister of health send me the link with !!!! as a comment!

    APM International a souhaité vous envoyer cette dépêche APM international avec ce commentaire de sa part:

    Vendredi 20 janvier 2012 – 18:01
    Autisme: une proposition de loi pour interdire les pratiques psychanalytiques
    PARIS, 20 janvier 2012 (APM) – Le député Daniel Fasquelle (UMP, Pas-de-Calais) a déposé jeudi une proposition de loi visant à interdire une prise en charge psychanalytique des personnes autistes.

    Dans son article unique, la proposition de loi indique que “les pratiques psychanalytiques, sous toutes leurs formes, doivent être abandonnées dans l'accompagnement des personnes autistes, au profit de traitements opérants, les méthodes éducatives et comportementales en particulier”.

    “Une réaffectation de l'ensemble des moyens à ces modes de prise en charge doit être exigée”, est-il ajouté.

    Dans l'exposé des motifs, le député affirme que “l'approche psychanalytique de l'autisme a été abandonnée depuis au moins 20 ans dans la plupart des pays occidentaux au profit de méthodes éducatives et comportementales” et que “la France ne peut plus continuer à cautionner et financer les pratiques de type psychanalytique dans le traitement” de cette pathologie.

    “La communauté scientifique internationale est unanime sur cette question et déconseille dans les guides de bonnes pratiques l'utilisation des prises en charge d'inspiration psychanalytique”, écrit le député.

    Il s'indigne “en constatant qu'en France ce sont les pratiques psychanalytiques généralisées dans nos établissements hospitaliers et médico-sociaux qui sont financées par l'assurance maladie” et réclame de “réaffecter l'ensemble des moyens existants sur les traitements opérants”.

    Le député rappelle aussi que la Haute autorité de santé (HAS) a “reconnu en janvier 2010 la classification internationale des maladies de l'Organisation mondiale de la santé (la CIM-10), incluant l'autisme dans les troubles envahissants du développement et abandonnant de fait la notion de psychose infantile”.(…)

    co/ab/APM polsan

    COPAK003 20/01/2012 18:02 ACTU
    ©1989-2012 APM International.
    APM International est une SAS au capital de 308.000 € du groupe Wilmington Group plc.
    33, Avenue de la République, 75011 PARIS, France
    Tél: 01 48 06 54 92, Fax: 01 48 06 27 00
    RCS PARIS B 351 616 859 – SIRET 351 616 859 000 36 – APE 6391Z
    Numéro de TVA intracommunautaire FR33351616859

  • Anonymous

    I must speak out against the personal attacks against a fellow commenter above.

    C'mon people, we're guests here. Let's show some manners.

  • Ivana FULLI MD

    Anonymous 23 01 12 18:47

    Please read in:

    a Dr Bishop fellow academic complaining:

    “”P.S. 13.52 on 12th August 2011
    A further response from xxx

    Dear Professor Bishop,
    I am astonished by your peremptory decision to publish our correspondence without permission. I ask you to add the response below, without any editing, as a matter of urgency.””

  • Liz Ditz

    Thanks for posting this, Neuroskeptic. I think the timing of the release meant it didn't get as much exposure as some of the Bearman group's earlier papers.

    I live and work with autistics in California. There are some nuances that aren't apparent in the discussion above and in the comments here.

    In discussing an earlier Bearman paper, “Sullivan” at LeftBrain/RightBrain (a California physicist and autism parent who writes extensively on autism research and who has presented a poster at IMFAR) wrote (emphasis added):

    The study looks at children receiving services from the California Department of Developmental Services (CDDS). The CDDS dataset is not a “census” of autistics in California, but is a registry of those who have sought services, have been identified as autistic and and who have been granted services. Factors which can affect who seeks services for their children, who seeks and how easy it is to identify an autistic child (e.g. access to people who can do the diagnosis) will have an effect on who is identified and when that person is identified.

    One thing I have wondered about: a Health Maintenance Organization (HMO) called Kaiser Permanente provides health care for about 40% of Californians. All it would take to make a significant change in early-childhood autism identification would be for Kaiser to change their policy– to become [more] or [less] aggressive about screening for autism early in infancy–say at 18 months. I am not saying that happened in the study time frame, I am just noting that having one dominant provider can have such effects.

    Sullivan also wrote an extensive commentary on the Los Angeles Times Discovering autism 5-part series.

    Dr. Fulli is mistaken in her reading of the first part of the series, about an autism diagnosis being “a sure way to get publicly funded services for one's child learning problems”. People who have never visited California, or who only have been to say, San Francisco or Los Angeles, haven't a clue how varied our state is in terms of demographics, or the regional variation in services provided. Among other things, the high-tech industry is a mere fraction of employers in California.

    I recommend those who are not well versed in California autism issues read Sullivan's discussion of the LA Times series.

  • Ivana Fulli MD

    Litz Diz,

    When I write : “”I cite”” be it from a medical or a laypersons journal I am citing.

    You dare to wrote:

    “”Dr. Fulli is mistaken in her reading of the first part of the series, about an autism diagnosis being “a sure way to get publicly funded services for one's child learning problems”.””

    I could also have cited from that LATimes article Duke University's France and Dr. Nancy Niparko, a child neurologist in Beverly Hills,Bryna Siegel, who heads the autism clinic at the Langley Porter Psychiatric Institute at UC San Francisco or a mother Laurie Bailey :

    //Growth in milder cases accelerated after the 1994 edition of the psychiatric manual added a new diagnosis to the spectrum: Asperger's disorder, for children with autistic behaviors but no speech problems or intellectual deficits.

    Duke University's Frances, leader of the scientific panel that created that edition, said the change unintentionally opened a floodgate.

    “People started seeing it whenever a kid does something the slightest bit strange or starts collecting too many baseball cards,” he said.//

    ////Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good.

    “If it's going to improve the possibility of getting services that will be helpful, I will give the label,” she said.

    “I don't work for labels. Labels work for me.”////

    ////Of all the advice Laurie Bailey received when she began to see signs of autism in her son, one piece proved most valuable.

    “If you embrace that word” — autism — “you will get far more services,” a friend told her.////

    ////Bryna Siegel, who heads the autism clinic at the Langley Porter Psychiatric Institute at UC San Francisco, believes the radical shift in autism diagnosis has swept up some children who don't have the disorder.

    Mislabeling children can damage them psychologically and lead to wasteful spending, she said.

    As a frequent consultant on contested cases, she often critiques evaluations and finds that the evidence for autism is weak.

    To illustrate her point, Siegel shared with The Times the records of a 7-year-old girl, after redacting her name and other identifying information. Siegel had been hired by one of the state's regional centers to review the girl's autism diagnosis.////

    You might not like what those people told the LAtimes journalist dear Liz but pleaser don not aéccuse me of making false citations!

  • Ivana Fulli MD


    Also I wanted to tell that my family name Fulli is rare even in Italy and I am not using it as a pseudo.

    On the 20 01 12 I cited stament that the LA times journalist attribueted to Catherine Lord -no friend of mine- and you should have accused her not poor I.

    I cited catherine Lord via the LATimes:

    ////“It used to be that autism was the diagnosis of last resort,” said Catherine Lord, director of the Institute for Brain Development at New York-Presbyterian Hospital and a leading authority on autism diagnosis. “Nobody wanted it. Now it is seen as preferential.”

    Indeed, some parents pursue it doggedly — even in court — because it can open the door to publicly funded services.////

    I also suspect you hated the sociologist point of view in that article:

    ////But the hot spots could not be linked to chemical plants, waste dumps or any other obvious environmental hazards. Instead, the cases were concentrated in places where parents were highly educated and had easy access to treatment.

    Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.

    Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.

    Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.

    Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away.

    The reason, his analysis suggested, was simple: People talk.

    They talk about how to recognize autism, which doctors to see, how to navigate the bureaucracies to secure services. They talk more if they live next door or visit the same parks, or if their children go to the same preschool.

    The influence of neighbors alone accounts for 16% of the growth of autism cases in the state developmental system between 2000 and 2005, Bearman estimated.

    In other words, autism is not contagious, but the diagnosis is.

    “`Is it real or not?' is a meaningless question,” Bearman said of the surge in cases. “The sociological processes are as real as the biological processes.”////

  • Ivana Fulli MD


    I would like to know why I am fair game to be accused of false citation or speking about a Californian situation I mpa supposed to know nothing about or anything.

    I have on many occasions being called names by your commentators and it is OK with me up to a point

    -that is I cannot understand when I can freely be called a fraud by LIZ and at the same time being reproached by you when I do the same.

    Like when I asked -to my mind- a legitimate question in another post to dear Bernard whose croisade against Pr Charles Nemeroff -a person I don not know on a personal level- when one could ask oneself if a personal thing was not involved like when Kenneth Starr was pursuing president Clinton!

  • Neuroskeptic

    She didn't call you a fraud. She just said you were mistaken in your interpretation of an article. If she had called you a fraud, I wouldn't be happy, but she didn't.

    Everyone is free to say that people are mistaken. That's what debate is.

  • Ivana Fulli MD


    I wrote I cite and I cite the article:,0,1218038.htmlstory
    Writing “I cite” followed by // as commas!

    I didn't interpret anything about that article.

    Liz is obviously unhappy about this article and ended her comment by:I cite Liz Ditz:

    //I recommend those who are not well versed in California autism issues read Sullivan's discussion of the LA Times series.//

    So she should have accused the Los Angeles times journalist or the scientists and parents cited of not having visited more than San Francisco and Los Angeles and not being well versed in California autism issues!

    NB: if LIZ knew anything about the current research results in genetics in autisms she would put an S to it.

    By the way, I suspect you might not have understand what Michelle Dawson wrote since my understanding of her research is that she does not think much of the high achiever /low achiever criteria in autisms ( and note that she has herself suffered to be labelled a medium achiever autistic person at some time in her life).

    Also, an anonymous dared to preach upon I admonesting me to show respect about an academic psychologist who had exposed to ridicule in her blog a researcher's view and using the DSM5 proposals as an argument of authority at that.

    Not to mention my friends in some autism associations both sides of the atlantic- the Asperger Ass of New England being one strong voice ; other psychologist academics like- just an example -Pr Simon Baron-Cohen are very critical about the DSM5 proposals about the autisms and do not desserve to be ridiculed in Dr Bishop's blog not more than they desserve to get their private academic e-mails being disclosed and ridiculed in her blog.

  • Ivana Fulli MD

    Dr Bishop and her brave anonymous champion,

    I cite the NEAA excecutive director:

    //As Executive Director of the Asperger's Association of New England (AANE) in Watertown, Massachusetts, I, too, am extremely worried that the proposed revised DSM-5 criteria could prevent those with Asperger's Disorder and related Autism Spectrum Disorders (ASDs) from receiving needed services. I am particularly concerned that the diagnosis of Asperger's Disorder may disappear entirely from the DSM.

    When AANE was founded in 1996, very few people had heard of Asperger's. I met hundreds of families who were floundering, unable to find help because services designed to help people with classic Autism were very different from interventions needed for youth and adults with Asperger's. Many people with Asperger's were receiving incorrect and misleading diagnoses such as Schizophrenia, Bipolar Disorder, or Oppositional Defiant Disorder.

    Over the past sixteen years, as name recognition of Asperger's has increased, I have seen how an accurate Asperger's diagnostic label can transform lives. The name “Asperger Syndrome” has given thousands of individuals and families access to tolerant understanding, interventions, and supports tailored to their unique needs. People have come together under the banner of Asperger's, forming a community where they can share experiences, resources, and strategies, and find inspiration and hope. Now, the impending elimination in DSM-5 of the Asperger's label, and the probability that a swath of individuals formerly seen by the clinical world as having Asperger's will no longer meet new, unfairly stringent criteria is creating an enormous fear of losing much of what we have worked so hard over 20 years to gain.

    While Asperger's is sometimes called “mild” autism, there is nothing “mild” about the impact Asperger's has on a person's life. Individuals with Asperger's and related profiles are not less autistic than those with more classic profiles. Rather, they are differently autistic. Though they may have strong verbal skills and average to high overall intelligence, most face significant challenges in social interaction, basic organizational abilities, and daily living skills. Frequently, they are unable to find and keep employment or live independently. Many withdraw from all social interaction, and suffer from crippling anxiety or depression. The dichotomy of “high-functioning” and “low-functioning” autism is a false one.

    More research is urgently needed to ensure that no one with Asperger's or any other autism spectrum disorder will be excluded getting a diagnosis due to the revised DSM-5 criteria. Why not retain the Asperger's diagnosis, which has already proven its worth, in the DSM-5? Autism is a broad, complex, multi-dimensional disorder, not always easily quantified and exactly codified. All of the ASD's always have a profound impact on the lives of individuals and families. No one should be left out in the cold.


    Dania Jekel, MSW

    Executive Director

    Asperger's Association of New England //

    NB: Dearest Liz please note that I cited Dania Jekel – a very bright descendant of sigmund Freud like the last greatest of painters Lucian Freud and as opposed as their common ancestors 'views as LF had beeen-

    and do not insult me pretending I know nothing of deep MA since I visited only Boston, Cambridge and Cape Cod and it is not my business to write about American aspies from MA when being incompetent on the subject!

  • Ivana Fulli MD

    Dearest Liz DITZ,

    I now understand where you stand reading in the link you gave us as an antidote to the LA Times journalist article you hated me for citing:

    You are like Dr Bishop one who is very pleased indeed pleased with the DSM 5 proposals on autisms to the point that you take it as the DSM5 when the reality is not so bleak yet;

    I cite the blog post you send us a link to

    ////”Prof. Volkmar gave a single slide at a small conference and had the permission of his editor to do so. The Times picked this up and has now sparked a great fear of the DSM 5 within a large segment of the online autism communities.”///

    It would have been much more honest to write that poor Dr Fulli got on your poor nerves because she dared to cite a LA Times article and attack Dr Bishop for considering the DSM 5 proposals as a done thing and also for using that hypothetic DSM 5 as an argument of authority against a fellow academic's views on her blog.

    You might be a very nice person and I just hope that you are not involved in research with your attitude taking your wishes for the reality and ignoring that the DSM 5 proposals are just proposals yet.

  • Ivana Fulli MD

    Dearest LIZ DITZ,

    I ciiiiiiiiiiite the “medical news since the Yale study will be published on line only in February 2012 and in printed edition in April 2012:

    //Volkmar and his team found that in a group of individuals without intellectual disabilities who were evaluated during the 1994 DSM-IV field trial, it was estimated that approximately half might not qualify for a diagnosis of autism under the proposed new definition.
    Volkmar stressed that these preliminary findings relate only to the most cognitively able and may have less impact on diagnosis of more cognitively disabled people.

    “Use of such labels, particularly in the United States, can have important implications for service,” he said.

    “Major changes in diagnosis also pose issues for comparing results across research studies.”//

    Better to be safe than sorry and before you accuse me again , dearest Litz, of lacking judgment and professional ethics , I remind you that I cited and did not interpret the citations.

    For the same reasons, I cite again the blog post you send us a link to:

    ////”Prof. Volkmar gave a single slide at a small conference and had the permission of his editor to do so. The Times picked this up and has now sparked a great fear of the DSM 5 within a large segment of the online autism communities.”///

    I cite also Californian Professional: K Maxwell from California who wrote of Prof Volkmar's practical guide to Autism on Amazon :

    I ciiiiiiiiiiiiiiite dearest Litz K Maxwell (CA) I found on amazon today:

    ///Dr. Volkmar isn't as sexy as Jenny McCarthy, but he knows a heck of a lot more about autism. As a speech pathologist with 10 years working with autistic children and adolescents, and as a parent of a 4-year-old with autism, I recommend this book as an excellent resource for both parents and professionals. It is heavy on science and light on mumbo-jumbo, but it is not a difficult read. Definitely a must-have for anyone whose life is impacted by autism.///

    Fred Volkmar is the director of the Yale Child Study Center, he has an MD from Stanford university

    He signed “Against Le packing a consensus statment” after the Catania 2010 Autism Europe meeting where you can read that he has no conflict of interest

    and I will not be one to cry out because an American was making a statment against French academics like PR Delion from Lille and Pr Cohen from La salpétrière Paris packing French autistic children. I admire him for that.

    And he wrote a precious book for anyone interested in the autisms with another MD, a pediatrician with research experience in autism:
    “A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know”

    And I am very pleased to remind you that the DSM 5 will not necessary be identical to the DSM5 proposals

    – thanks to several publications in scientific journals like the one of the Yale team –

    Plus, the DSM 5 will either be followed by the DSM 6 proposals or the DSMs will vanish.



No brain. No gain.

About Neuroskeptic

Neuroskeptic is a British neuroscientist who takes a skeptical look at his own field, and beyond. His blog offers a look at the latest developments in neuroscience, psychiatry and psychology through a critical lens.


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