Autism Vox

220 opinions for If There’s No Autism Epidemic, Where are all the Adults with Autism?

• Amy
  Apr 24, 2007 at 11:50 am

  Thank you for this essay. I know it’s one I’ll be sending lots of people to in the future.

• livsparents
  Apr 24, 2007 at 12:19 pm

  The 1 in 150 number is very deceiving in my mind. You have the people in ACHAMP categorizing 1 out of 150 to be basically non functioning, mostly non-verbal drags on society. Even the most ardent of the mercury theorists at this point would HAVE to admit that the DSM-IV criterea drastically changed the autistic criterea and that better diagnosis has greatly influenced the numbers.

  So where are they all? They’re in our high schools, colleges, they’re working jobs (most are probably not motivational speakers, granted), are mothers/fathers (God forbid, they’re PROCREATING!). Some may have been misdiagnosed as mentally retarded and not received the therapies they needed. But, they are all out there.

  My guess is if we played a warped version of “What’s My Line” and lined up a group of people and asked “Who’s the Aspie”, they would get missed 9 times out of 10.

  I still get a pit in my stomach though that we COULD be missing a issue that there MAY be an increase in severity of autism. If ACHAMP and the like would get off their ‘mercury has caused the 100 fold increase’ kick and get down to true investigations, I might be inclined to agree that this area should be loooked at. Far too much could get buried in a 2/3% (or 1% in NJ) number…

• Joe Mele
  Apr 24, 2007 at 12:49 pm

  This ADDM is not without concern. It is analogous to a registry for Jews that the Nazis had to deal with the Jewish problem. They promoted awareness of the jewish issue as much as Autism Speaks promotes the awareness of Autism.

  Michael Carley emailed that Autism speakes helped to retract statements in the media on autism with regards to Cho. But on reflection, This seems rather unlikely. CNN first did the retraction a competitor to msnbc (owned by NBC) then almost a week later msnbc followed suit. Given Autism Speaks is run by bob wright former NBC CEO.
  I can imagine that they called CNN first and they said wow NBC says so. And then only later msnbc followed suit. You have to think everything thru with some people.
  dd

• Harold L Doherty
  Apr 24, 2007 at 3:56 pm

  Some of them are living in group homes and institutions.

  They are not all ‘living amongst us’.

• dkmnow
  Apr 24, 2007 at 4:06 pm

  “Just where might those 1 in 150 adults with autism be? As surprising as it may seem, they are living and working among us.”

  And, surprisingly enough, most of us got where we are without any of the “medically necessary interventions” that have become so profitabl– er, I mean, popular.

  Though, to be sure, most of us would be far more successful as the “square pegs” we inevitably are, had we been allowed to develop without all the derision, manipulation, harassment and assault that continue to be lavished upon us to this day … to cite the oft quoted line from Paul Collins: “the problem with pounding a square peg in a round hole is not that the hammering is hard work. It’s that you are destroying the peg.”

• chrisd
  Apr 24, 2007 at 4:08 pm

  I’m fairly certain that I have ADHD; that my husband, a lovely, quiet man, may have asperger’s, that my FIL may also be on the spectrum w/OCD.

  I think there are a lot of people that may fit into that catagory and yes, in the work place. THANK GOD for that thought.

  And I agree, I’ll just bet some of them have been treated for the wrong thing and institutionalized. Remember that story about that woman who spoke a different language and was institutionalized for years. I think she was from Vietnam, a small village.

  Good grief, if it can happen to that poor lady, why not people w/ASD?

• Rochelle
  Apr 24, 2007 at 4:23 pm

  …Some are diagnosed as “mentally retarded” and living in facilitated living homes and centers…

• KathyIggy
  Apr 24, 2007 at 4:43 pm

  There’s an interesting article about adults with ASD in the St. Louis paper–http://www.stltoday.com/stltoday/lifestyle/stories.nsf/everyday/story/9040A998E140DAEF862572C100776629?OpenDocument

• Joe
  Apr 24, 2007 at 5:01 pm

  Yes we are out there, working along with everyone else. We’re the ones that don’t go out with their co-workers after work. We tend to miss many group or team gatherings that are not work related, and we often just quietly do our jobs without all the social chit-chat.

  Most of us were treated horribly when growing up, and that has affected how we act as adults. But we are not all locked up or institutionalized.

• Lisa/Jedi
  Apr 24, 2007 at 5:03 pm

  Great essay! Since discovering my son’s autism I have become convinced that some of the mentally retarded children I spent time with back in the 70’s, as a volunteer at a children’s developmental centre & summer camp, were autistic rather than retarded.

  I found Dr. Grinker’s overview of the evolution of psychiatry in his book absolutely fascinating, not only from the view of someone who worked with developmentally disabled children back then, but as the daughter of an eventually-diagnosed bipolar father. Understanding “where” psychiatry was for most of the 20th century makes the changes in diagnoses make so much sense… Thanks for writing this!!

• Rochelle
  Apr 24, 2007 at 5:14 pm

  Lisa/Jedi, after reading Grinker’s book, I, too, thought of my classmates in my elementary school who were considered “mentally retarded.” The one’s who played with pieces of string, flapped their hands, and mumbled to themselves. It’s significant the number of individuals who are being evaluated and who are receiving services now. I’m always reminded of this when I hear/read the epidemic-people say that there weren’t any autistic children when they were growing up.

• Phil Schwarz
  Apr 24, 2007 at 8:51 pm

  Great essay, Kristina and Dr. Grinker! I’m very glad you’ve gotten together and collaborated.

  I think the comment of Donna’s mother from Tennessee was spot on. Harold, what we’re working for is better support and more flexibility and better alternatives for the adults who are in institutions and group homes. Folks like Larry Bissonnette, Rob Cutler, Mike Hoover, Sharisa Kochmeister, Link Grigsby, and Amanda Baggs, and their support staff and family, are showing us the way forward. Folks like Alex Bain and his parents Janet and Roger — right across the Northumberland Strait from you — are showing us how to parent from profound handicap in childhood towards greater and greater autonomy in adulthood. They’ve been my inspiration with Jeremy. The slow yet incremental progress of little daily advances is a better bet than any quest for a silver bullet.

• Estee
  Apr 24, 2007 at 10:43 pm

  Enjoyed this essay and am linking in our next TAAProject newsletter (online).

• melvin polatnick
  Apr 25, 2007 at 12:40 am

  Hello
  I am one of the missing adults who can now be labeled “autistic”.But due the mindset of the times my bazaar behavior was called a “character disorder”.The awareness of Autism today is due to the shift in blame for bazaar behavior to genetics rather than free will.I never chose to be dysfunctional,but my therapists never realized that truth.

• Phil
  Apr 26, 2007 at 6:58 am

  Terrific essay, including facts and research that the alarmists would have big trouble countering!

• melvin polatnick
  Apr 26, 2007 at 5:25 pm

  Hello Roy and Kristina
  I will tell you where the adult autistics have gone.Most of them have committed suicide or drank or drugged themselves to death.The rest are working in low skill jobs or diagnosed as mentally disabled by the federal government and collecting SSI.The lucky few with a better adapting nervous system got lost in the mainstream of society.I have never lost sight of the plight of the adult Autistic,because their pain was mine.

• Chuck
  May 2, 2007 at 4:02 pm

  Scientists, by their very nature, must rely on objective statistical, measurable events. Yet Grinker and Chew must use un-scientific assumptions to explain away any epidemic. Statistically, scientifically, obtained objective measurements prove there is an epidemic among the younger population. Until Grinker and his ilk can provide the converse hypothesis to this statement, along with actual objective statistics, the only thing they are declaring is their opinion.

• Chuck
  May 2, 2007 at 5:44 pm

  According to the CDC’s own database for MR in 1993
  http://www.cdc.gov/mmwr/preview/mmwrhtml/00040023.htm

  The rate of MR was 7.6 per thousand for ages 6 to 64 years old. For the theory that the 1 in 150 (6.6 per thousand) has always been around the inept, uneducated, unaware doctors who didn’t know how to diagnose ASD disorders in 1993 would have had to be wrong 86% of the time. So either the doctors in the past had absolutely no idea how to diagnose both Mental Retardation AND ASD disorders or the equally idiotic presumption that the current guidelines set by DSM-IV have so watered down the actual clinical diagnosis of an ASD disorder that the diagnosis is worthless and overstated. Which generation of doctors are the biggest idiots when it comes to diagnosis, because one group has to be wrong?

• melvin polatnick
  May 2, 2007 at 7:24 pm

  The importance of choosing a diagnosis between MR or ASD is a waste of time better spent elsewhere.Countless hours of research was done to find out the difference between a idiot and a imbecile,nothing important was gained by their effort.They are both dysfunctional and both need outside support,that support is basically a federal check big enough to help them survive.Diagnosis of the mentally challenged should concentrate on their limitations rather then their label.Those labels are being used by quack doctors promising a cure that in most cases is not possible.Helping the mentally dysfunctional pay their bills should be our only priority.Counting them and sorting them out should be stopped.Lets be real and give help where it counts.

• Sarah
  May 2, 2007 at 9:08 pm

  That hypothesis only works if you think that everyone considered autistic now would have been considered mentally retarded in the past. That’s never been the case. Even many of Kanner’s original patients were considered to be of average or better intelligence (as determined by traditional metrics, which are problematic in and of themselves.)

• Rich
  May 2, 2007 at 11:48 pm

  But Sarah,
  In the past, higher functioning people were not diagnosed with anything at all in many cases, or were called nerds or geeks. People with seizure disorders were very unlikely to be called autistic, but would have diagnoses like “seizure disorder with obsessive compulsive traits,” and anyone with a clear medical reason behind the autistic symptoms would be called by that name (e.g., PKU, congenital rubella, etc.) rather than as autistic. So the MR group is just one part of the total group of people who today would be called autistic.

• Chuck
  May 3, 2007 at 12:00 am

  Thank you Sara for pointing that fact out to Melvin and me. The past and present diagnosis of ASD is VERY important as a minority of ASD individuals are MR. A majority of ASD individuals are NOT mentally challenged, as Melvin claims. Melvin is also right in saying may quack doctor’s have mis-diagnosed and offered no cure at all, when in fact many treatments could help an ASD individual to live a better and more productive life. Counting them and sorting them is the entire reason Ms. Chew wrote the original article we are now debating about, so she must believe that it is important, and Melvin must have thought it was important enough to read and comment on, so that is why we are all here.

  Sara, you also point out the primary problems of all the naysayers about any surge in the recent cases of ASD. They always say, “They were MR or Schizophrenic or just odd but today would be ASD. There is no possible way to re-bucket any or all of the previous mental disorders to come out with the current rate of ASD without making up some fictional “undiagnosed” ASD people. If it were possible, what a tremendous hoopla would have be made by the CDC announcing, “The is NO autism epidemic PLUS the MR rate for the previous 40 years is now 60% lower then we previously stated. BUT WAIT, THERE’S more! Schizos were ALSO overstated by 40%, and if you buy this now we will also throw in…” This is the sales pitch that the naysayers say should have happened, but never has.

  Ms. Chew has to rely on these phantom “undiagnosed” individuals for her credibility in her assumption of this article. That would be much like me taking a $1,000,000 check to the bank and trying to cash it. There are $1,000,000 SOMEWHERE out there, so I should be able to use them. The bank would laugh at me. I laugh at Ms. Chew. Put them in the bank or don’t count them at all.

  Many may post, “I was not diagnosed as a child but I am autistic”. Then be diagnosed and support Ms. Chew’s hypothesis. “But I live my life and I don’t need a diagnosis”, is what I hear next. Well then your life is a miracle because doctors routinely say there is no cure for an ASD disorder, but living a normal life is proof that there must be some sort of cure, and they should all write books about it to prove all those doctors wrong.

• Sarah
  May 3, 2007 at 12:33 am

  I agree with everything Rich wrote. Sorry if I didn’t make that quite clear.

  And Chuck, I think that if you stick around this blog (or other Autism Hub blogs) long enough you’ll find that there are plenty of autistic adults who were not diagnosed as children. I myself went undiagnosed until the age of 17. Grinker’s book points out that the highest rates of increase in autism diagnosis are actually among adult age-groups, as well as among older teenagers. The claims in this article are quite well-supported by statistical and anecdotal evidence.

  Moreover, the existence of autistic adults leading “normal” (or “semi-normal” lives) is a lot more common than you seem to think. A superficially “normal” life (whatever that’s supposed to mean) doesn’t mean that a person has been cured, or that they aren’t still autistic.

• Kristina Chew, PhD
  May 3, 2007 at 12:42 am

  Regarding this statement, Chuck—-

  “Counting them and sorting them [=autistic persons] is the entire reason Ms. Chew wrote the original article we are now debating about, so she must believe that it is important, and Melvin must have thought it was important enough to read and comment on, so that is why we are all here.”

  —-we made the point that there are a number of reasons for why it is difficult to carry out a study the prevalence of autism in adults, including this:

  “Autism is still a developmental disorder diagnosed in childhood, and the tools for diagnosing autism in adults are not nearly as valid or reliable as those for children.”

  As Sarah notes, one need not be “cured” of autism to lead a “normal life” (”whatever that’s supposed to mean,” to quote Sarah further).

• Zaecus
  May 3, 2007 at 4:44 am

  Chuck,

  I find your position somewhat incomprehensible, but if I have you right, you’re saying that autistics need to have a diagnosis in order to be autistic…?

  Do you have a diagnosis stating that you are neurologically typical, or is that just an assumption that you’ve made?

  I always experience a moment of humor over conversations that take this turn because of the connection between autism, which is currently in the DSM, and homosexuality, which is not but used to be.

  Homosexuals are still discriminated against, still need assistance that they can still get in order to combat that discrimination (no implication about the ease of this), and last I checked, they don’t need to prove they’re having sex with people of their gender.

  And the whole time that homosexuality was in the DSM, there were wealthy, and even powerful, homosexuals working very hard at hiding everything about their ‘disorder’, including often discriminating against others like them.

  You want others like us to ‘come out of the closet’ when there are people out there who very loudly seek our extermination?

  I… don’t know what to call that, but it surely can’t be ethical. It definitely doesn’t make a lot of sense.

  I’m perfectly willing to let them hide, like I used to, even though there presence might help our cause because… I really don’t like the idea of adding more martyrs in the process, and if we start popping out of hiding, even in small but vocal numbers, I could easily expect a lot of parents and others to panic about what some child might ‘turn into.’

  ‘Cause, in case you didn’t know, homosexuals still get beaten to death even though other homosexuals are running non-profit organizations, major companies, and political campaigns.

• Chuck
  May 3, 2007 at 11:15 am

  I have been around long enough to know who all the players are, the neurodiverse, the ABAer, the biomedicals, the Dieters. I have heard and seen all the stories and people, literally, across the spectrum. I am not a newbie in this arena. Some of Kanner’s own test subjects are still alive, so it is impossible to claim that adults that were diagnosed with autism do not exist. The problems you and Ms. Chew have graciously pointed out to me are:
  “Autism is still a developmental disorder diagnosed in childhood, and the tools for diagnosing autism in adults are not nearly as valid or reliable as those for children.”
  These adults are fully developed, so they cannot have a “developmental” problem. Zaecus has pointed out there is no need to have a diagnosis, if there is no problem. The DSM-IV criteria are not globally applied by all practitioners, so the actual current diagnosis is subjective. Maybe this unexplained surge is due to poor diagnosis criteria set by the DSM-IV. Maybe the DSM-IV has unwitting allowed doctors to pad their wallets with unnecessary and inaccurate diagnosis. What is the real justification for the change from the DSM-III manual? I say the DSM-IV manual in incorrect and incomplete. Sara has an adult metal problem as yet, undefined by DSM-IV.
  Ms. Chew has also pointed out in her quote that it would be impossible to justify her claims about “No Autism Epidemic”. It would be un-ethical and intellectually impossible to try to go back and try to diagnose other mental problems with an ASD disorder as well as trying to diagnose a developed adult with a developmental problem. The statistics have to stand as is, with an unexplained surge.
  Zaecus has pointed out another very good point. Homosexuals can choose to declare their homosexuality or not. Because it is not in the DSM-IV, there are no criteria to prove or disprove any claim. It is also impossible to objectively, statistically count the homosexual population. It is also impossible to objectively and statistically count the adult, undiagnosed, ASD population. So claiming the size of either population is pure opinionated speculation.
  There is a diagnosis for individuals in the DSM-IV who say they have a problem that isn’t diagnosed. They are called a hypochondriac according to DSM-IV.

• The AS man
  May 3, 2007 at 11:56 am

  Chuck

  Dr. Chew is not relying on “phantom” individuals. You construct a straw man argument. You presuppose as fact that adults on the spectrum never got a diagnosis after the fact. Which is simply not true. Read the blogs and the forums they tell their story in their own words.

  Again you analogy with a bank is false. An ASD diagnosis is not a hard and fast thing as a monetary instrument. Doctors disagree over diagnoses. There is autism via fragile X , via Cranio-facial disorder cfd something etc.

• Kristina Chew, PhD
  May 3, 2007 at 1:02 pm

  Chuck, in regard to your point:

  “These adults are fully developed, so they cannot have a ‘developmental’ problem.”

  You are taking the word “developmental” quite literally and seem to have some preassumptions about what it means to be “fully developed” (I gather you mean this in a cognitive sense as well as physical). The evolution of the DSM is described in Professor Grinker’s book Unstrange Minds.

• Chuck
  May 3, 2007 at 1:14 pm

  Type-I diabetes is a misdiagnosis for anyone over 18. Autism is a misdiagnosis for anyone with Fragile-X. People with Fragile-X have told me this. Using Ms. Chew’s statements, Autism would most likely be a misdiagnosis for anyone over 18.

• Mr Wonderful
  May 3, 2007 at 1:16 pm

  Sarah and the others who say they were not diagnosed until they were adults or at 17 in Sarah’s case and now hold jobs, have families, and even reply to blogs like this are in the same mindset as those who also say they don’t think there is a need for a “cure”. There are autistic adults who can speak but can’t/won’t carry on a conversation. They can’t safely cross a street because they don’t grasp the concept of danger and just start walking without regard to traffic. They need and will need for the rest of their lives, supervision in almost every aspect of living.
  How do I know this? I have a 30 year old son with autism living at home with me.

• Chuck
  May 3, 2007 at 1:29 pm

  If “developmental” does not refer to cognitive, physical, or chronological growth, then the tools for diagnosing an 80 year old should be just as valid as those used on a 4 year old. Why do you say that the tools are not as valid?

• LB
  May 3, 2007 at 2:06 pm

  Just like psychiatrists prescribe drugs off-label or choose to use labels even if patients do not meet all the criteria (or the critieria are vague enough to be interpreted in different ways) - the DSMs are a guide not carved in stone. Which is the reason they are updated and changed. From what I have read recently OCD may be moved from under the Anxiety catagory and placed in a separate one with impulsive/repetitive disorders. So all along it was an anxiety disorder and now it is something different? What about OCD changed to make it not anxiety based anymore? Labels are changed all the time as knowledge increases - and new ones are created.

  Most people do not fit into neat little catagories - and alot of conditions that are considered psychiatric have a range of symptoms and overlap. Some doctors will label each and every little quirk as a separate disorder and others will put everything under the umbrella of the main condition. When I was given the label of OCD I did not exactly meet the critieria for it because I did not see some of the repetitive behaviors as being unnecessary or extreme or causing any anxiety. They just simply added “with poor insight” to cover that discrepancy. Even today many parents say their kids were labeled with someting else such as severe OCD before getting an ASD label.

  One thing that I find really interesting though is if you go to just about any online autism parent support group you will find two major (yet contradictory) post themes. One is that there is an epidemic of autism and that these kids could not simply have been unnoticed or mislabeled before. The contradiction is the other postings of how much difficulty parents are having getting their kids diagnosed as being on the spectrum. And the same people outraged about the epidemic are also outraged that the professionals don’t know anything - apprently even with all this great awareness out there. Imagine how much awareness there was in the 1970’s.

• julie
  May 3, 2007 at 2:08 pm

  If “developmental” does not refer to cognitive, physical, or chronological growth, then the tools for diagnosing an 80 year old should be just as valid as those used on a 4 year old.

  It is not a matter of the tools being valid or not. A lot of these adults have learned to live within society and have no desire to be officially diagnosed as well as the fact that children are in the school systems where we have greater access to them and the abilty to evaluate them over time. Adults “hide” within our society. I am sure as is the case with mental illness they are hiding uncounted in the homeless population to name one.

• Sarah
  May 3, 2007 at 2:11 pm

  1. It’s sort of off-topic, but it’s quite possible to get type 1 diabetes after the age of 18. (Though type 1 diabetes isn’t really the best comparison for autism, since autism is always apparent from infancy even if it isn’t diagnosed while type 1 diabetes is sudden onset.)

  2. You don’t seem to understand that our cultural understanding of autism has changed drastically in recent years, and this has been reflected in the changing diagnostic criteria. Many adults could not have been diagnosed as autistic as a child, because the understanding and broader diagnostic criteria simply did not exist. Regardless, most clinicians who diagnose adult autism look at childhood development as well as current behaviors. Accurate adult diagnosis of autism is quite possible, on all different “parts” of the spectrum, but it is more difficult because many of the criteria are quite child-specific. (How many adults, or even older children, “point at objects” to share interest?) Again, Grinker points out in his book that the number of autistic adults has increased by a factor of around three in some age groups. These are new diagnoses, of people who grew up in a society where autism was thought of in a VERY different way.

• Joe
  May 3, 2007 at 2:22 pm

  Chuck,

  I was born in the 70’s. I was never diagnosed as a child, so I am NOT anywhere in the 70’s data. The elementary schools I went to wanted to label me as MR, but my mom wouldn’t let them. Because of her I was not labeled at all.

  I was able to get a diagnosis of on the autism spectrum as a adult, just last year. So it is possible to get one. The diagnosis was based on testing of me as I am today, as well as information supplied on how I was as a child (including information from my mom.) We are here, and we are trying to get people to listen to us.

• Chuck
  May 3, 2007 at 2:47 pm

  Sara,
  As a Type I diabetic, I can assure you it is not possible to get juvenile onset diabetes as an adult. However, sadly, it is also quite possible to get Type-II diabetes as a child. Plain and simple: Type I = never fully functioned, Type II = it weakened or was abused.

• Mr Wonderful
  May 3, 2007 at 2:57 pm

  In post # 28 Ms Chew disputes the statement “These adults are fully developed, so they cannot have a ‘developmental’ problem.” by saying “You are taking the word “developmental” quite literally and seem to have some preassumptions about what it means to be “fully developed”.”
  The goveernment would disagree with that.
  CFR TITLE 42 > CHAPTER 144 > SUBCHAPTER I > Part A > § 15002 Definitions:

  (8) Developmental disability
  (A) In general
  The term “developmental disability” means a severe, chronic disability of an individual that—
  (i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
  (ii) is manifested BEFORE the individual attains age 22;
  (iii) is likely to continue indefinitely;
  (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity:
  (I) Self-care.
  (II) Receptive and expressive language.
  (III) Learning.
  (IV) Mobility.
  (V) Self-direction.
  (VI) Capacity for independent living.
  (VII) Economic self-sufficiency; and
  (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.
  (B) Infants and young children
  An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described in clauses (i) through (v) of subparagraph (A) if the individual, without services and supports, has a high probability of meeting those criteria later in life.

• LB
  May 3, 2007 at 3:03 pm

  Type 1 and Type 2 diabetes are different - and adults can be diagnosed with both. Type 1 is considered an auto-immune disorder. Children can also get Type 2 diabetes which is why they stopped referring to it as adult-onset. Type 1 - little to no insulin produced; type 2 the body becomes insulin resistant. My Dad has diabetes and so do many relatives. When I was young I was considered hypoglycemic (opposite of diabetic) but thought it was a bunch of nonsense really.

• Sarah
  May 3, 2007 at 3:10 pm

  I apologize for taking this thread so far off topic, but with all due respect, Chuck, I think you’ve been given some misinformation about type 1 diabetes. (I have a close relative with the disease and have had a strong interest in it in the past.) It’s more rare but still possible to get the disease as a young adult. It’s an autoimmune disease, which is quite different from a congenital condition. There are adults who received this diagnosis as adults, and I’m not sure why you would question this. Still, this is completely off-topic so I won’t belabor this. I do think there’s an important connection between “juvenile diabetes” and autism, though, which is that both conditions are strongly associated with children even though many adults are affected. Just because autistic adults are largely invisible in the usual autism discourse doesn’t mean we don’t exist, though.

• Kristina Chew, PhD
  May 3, 2007 at 3:19 pm

  Thanks to Mr. Wonderful in #37 for providing the criteria; it was not so clear what the reference to the notion of “developmental,” “developed,” etc. were in #26.

• LB
  May 3, 2007 at 3:24 pm

  M. Wonderful - I don’t see what the discrepancy is. The point seems to have been that people with developmental issues can not adapt - this does not support that. It merely states that the issues must have occured before 22 (which IS an adult really) and continues. Does not say anything about the potential for compensating or adapting. So therefore does a child who learns how to point or speak become non-autistic or lose their label or is considered ot have been labeled inaccurately?

• Chuck
  May 3, 2007 at 3:25 pm

  Sara, I can pull out my very old developmental psychology book and re-read all of the old Kanner/Skinner/Lovaas studies to read about the underlying behavioral problems that really haven’t changed all that much since those studies. I do completely understand the cultural changes because ASD is more prevalent. Is this prevalence change artificial due to poor diagnosis criteria set forth by the DSM-IV or by inept doctors who have misdiagnosed in the past, or are the prevalence changes actual and the doctors are gaining experience by seeing more patients that they can accurately diagnose? Lovaas had to recruit from several states for his studies. I can drive around in my subdivision and find more DSM-IV diagnosed autistics then he had. When I grew up, I knew other children with MR, CP, deaf, blind, Downs, but never met anyone with ASD until my son was one. He is not diagnosed because I knew that DSM-IV criteria and the psychiatrist that use it are a joke and could not offer anything. I have found better.

• Joe
  May 3, 2007 at 3:38 pm

  Mr. Wonderful,

  You’re right when you say that many of us don’t want a “cure”

  But you’re wrong if you think we want research into treatments to stop. There should be treatments available to help those like your brother be able to be able to live independantly and safe and successful. If I can do it, so can he, but the methods needed to help him get there haven’t been figured out yet.

  And before you get too upset, I can talk, but have troubles holding a conversation (even more so over the phone.) I used to have troubles with safely crossing the street, but now I take safety to the other extreme. The love of my life is often amazed that I survived as long as I did without her there. But I did, and mainly because I didn’t have someone there always doing everything for me, I was FORCED to try before someone would help me. And I’m still forced to try today (and I’m not ridiculed when I fail.) I don’t think I’d be were I was today if everyone around me told me I couldn’t do anything and always did everything for me as I was growing up.

• Mr Wonderful
  May 3, 2007 at 3:56 pm

  RE # 41. LB says “I don’t see what the discrepancy is. The point seems to have been that people with developmental issues can not adapt.” The definition of “developmental diasbility” is from CFR Title 42, which is public health and welfare.
  People with developmental issues DO ADAPT. People born with hearing or visual impairments learn sign or braille to help them communicate with others. People with CP might learn to walk with crutches and/or braces. As for people with ASD issues, I would have to say that Temple Grandin HAS learned to adapt.

• Chuck
  May 3, 2007 at 4:58 pm

  Actually Sara, I wasn’t given misinformation about type 1 diabetes, my information was 30+ years old

• LB
  May 3, 2007 at 5:37 pm

  “People with developmental issues DO ADAPT. People born with hearing or visual impairments learn sign or braille to help them communicate with others. People with CP might learn to walk with crutches and/or braces. As for people with ASD issues, I would have to say that Temple Grandin HAS learned to adapt.”

  This is why I guess I am confused by the previous comparison that adults supposedly can not have a developmental disability if they were not labeled as kids. Instead of saying they simply developed - I would think it is more as you mentioned - adapting and working around things.

• Kristina Chew, PhD
  May 4, 2007 at 1:54 am

  A point to consider is that, because the DSM exists, that is how we talk about certain conditions/disabilities/etc.. Majia Nadesan’s Constructing Autism details the rise of psyhological discourse into our culture; among much else, she notes the resistance towards describing children in terms of such diseases/conditions/etc..

  It is certainly plausible to think that DSM-type conditions existed among (for example) the ancient Romans, but they of course did not use DSM-type language to describe these. One word for “insane” was furiosus which means “furious, frantic, mad, wild,” and there are references to a person not being of sound mind as regards their being able, or not able, to perform certain legal actions (such as making a contract).

• Zaecus
  May 4, 2007 at 3:27 am

  I was actually a little startled to see the government ruling on what a developmental disability is.

  To me, and emphasizing that this is my personal opinion, there are two ways a disability can be developmental.

  1) A person develops in an atypical manner that presents problems during important periods of development. Certainly, during these periods, this can be disabling, but the reactions to the atypical development can also be disabling, and that disability, even if the first isn’t, can be lifelong.

  An example of this that I could consider reasonable is hyperlexia. A child that shows identifiable traits of hyperlexia could ‘develop out’ of this, either normally or due to interventions (or normally and in spite of interventions), resulting in an adult who is no longer classifiable as disabled. This person could also not develop out of this period, regardless of any interventions or because of the interventions, and develop into an adult who is classifiable as disabled.

  2) Developmental ‘caps’: This radically leaves the rules established by various governments because it’s entirely possible for this sort of disability to not develop until someone is past the government mandated age of development.

  For example, if someone’s development in social interaction ‘caps’ at 25, they would not qualify as developmentally disabled by government standards, but 20 years later, their age-peers are not going to be responding all that well to someone who is, socially, as much as 20 years behind them.

  Of course, such a cap wouldn’t have to be a ‘hard cap’ where all future development is impossible but could be a ’soft cap;, beyond which development becomes more difficult. By that standard, however, everyone would have a developmental disability in some fashion… which I’m not altogether convinced would be a bad idea to expose the public to.

  I reserve the right to change my opinion, etc. because this is the first time I’ve been exposed to knowledge of a rule defining developmental disabilities in a way that did not match my own conceptualization.

• Mr Wonderful
  May 4, 2007 at 10:57 am

  In #35 Joe Says:
  I was born in the 70’s. I was never diagnosed as a child, so I am NOT anywhere in the 70’s data. The elementary schools I went to wanted to label me as MR, but my mom wouldn’t let them. Because of her I was not labeled at all.
  I was able to get a diagnosis of on the autism spectrum as a adult, just last year. So it is possible to get one.
  MY QUESTION IS WHY??? You are in your late 20’s or 30’s so why is a “label” important at this point in your life? A classification or label when you were in school would determine eligibility for services under IDEA, but what does it do for you now?
  As far as I can see, with that classification and a dollar you can get a small coffee at 7-11.

• Mr Wonderful
  May 4, 2007 at 11:38 am

  In # 43 Joe Says:
  You’re right when you say that many of us don’t want a “cure”. Unfortunately, many of the “high functioning” autistics don’t want a cure and since they can speak for themselves and write on blogs and listsevres and other areas, they say no one with autism should be cured. Many of these people feel that “curing” autism is akin to genocide or eliminating their lifestyle.
  What about the ones who really would like a cure and don’t really have a lifestyle?

  I used to have troubles with safely crossing the street, but now I take safety to the other extreme.
  This reminds me of part of an IEP I used as a bad example in a Congressional testimony. It read; “Johnny will learn to cross the street safely 50% of the time”.
  What happens the other 50% of his crossings?

• AnneC
  May 4, 2007 at 11:40 am

  “MY QUESTION IS WHY??? You are in your late 20’s or 30’s so why is a “label” important at this point in your life?”

  Well, there’s the matter of workplace accomodations…just because you’re not in school anymore doesn’t mean that you might not need various environmental adjustments in order to be the most effective employee you can be. Additionally, some autistic people grow up with a whole slew of labels that aren’t accurate, and a proper adult DX is a good thing when it replaces a bunch of misleading statements in your records. I guess if someone grew up with NO record at all and didn’t anticipate having any workplace issues as a result of their autism, then a DX might not help things much, but there are definitely practical reasons for adult diagnosis. Though in the future I do hope to see autism as being considered a configuration rather than a medical diagnosis, and a society that is more flexible and able to readily accomodate people with a wider range of needs.

• Mr Wonderful
  May 4, 2007 at 12:12 pm

  In #35 Joe Says:
  I was born in the 70’s. I was never diagnosed as a child, so I am NOT anywhere in the 70’s data. The elementary schools I went to wanted to label me as MR, but my mom wouldn’t let them. Because of her I was not labeled at all.
  I was able to get a diagnosis of on the autism spectrum as a adult, just last year. So it is possible to get one.
  In recent years, as the general public has heard more about autism, some people have said that people like Albert Einstein, Thomas Edison and Henry Ford may have been autistic or at least aspies. These people were either dead or very old before Kanner “discovered” autism.

• Joe
  May 4, 2007 at 2:18 pm

  As to why I went to get a diagnosis…

  1. I wanted to show that my son’s autism was not caused by anything other than genetics. To help show his mother that there is nothing “broken” just different. In doing so she’s started treating him differently and this has helped him considerably.

  2. I’m having troubles at work and am working on getting accomodations.

  3. I have two failed attempts at college behind me. I’d like to be able to get a college degree and now I know that I need accomodations for that.

  So I do have reasons why it’s important for me to have a diagnosis in my 30’s. Science and tech are my areas of interest, so when I’m able to enroll in school again I’ll be majoring in Physics.

  On the “cure” side, those of us who are against a “cure” are for treatments for some of the most disabling things that can come up. I for one would love to be able to go out in a crowd and not get disoriented or be in a crowded room full of strangers and not start to panic. But I don’t want to stop being able to think differently and have to work hard to be able to think out of the box.

• LB
  May 4, 2007 at 2:39 pm

  Another important factor in getting a correct label as an adult is the fact that many people were not unnoticed as kids but mislabled. And along with that comes medications and therapies that do not necessarily work if a person actually has AS or at least if it is co-occuring.

• Mr Wonderful
  May 4, 2007 at 2:40 pm

  # 51 AnneC Says:
  Though in the future I do hope to see autism as being considered a configuration rather than a medical diagnosis, and a society that is more flexible and able to readily accomodate people with a wider range of needs.

  Once again, WHY? Currently autism is considered a psychiatric diagnosis rather than a medical one.
  I’m not sure I know what a “configuration” is. But whatever it is, why would society be more flexible and accommodating toward that than a medical/psychiatric condition?

• Kristina Chew, PhD
  May 4, 2007 at 4:46 pm

  At the 2nd annual Penn Autism Conference back in March, I met a parent whose child has AS and is college-age; this parent was in the process of seeking an ASD diagnosis for themselves, and the topic of needing workplace accommodations was the main reason. This parent had attended college and was currently employed in a job that did not need a college education; this parent’s child had left college (and a full scholarship) for reasons relating to their AS diagnosis.

  A few days later, I was a seminar for the staff and faculty of the college where I teach; the topic of the seminar was sexual harassment and discrimination, but the presentation (by a member of New Jersey’s state government) considered harassment on the basis of sexual orientation, race, and so forth. I asked if any persons with AS had approached the office; the speaker said that they had not received any complaints regarding workplace issues for someone with AS. The speaker then mentioned a case involving someone with Tourette’s, but made it sound like the person with Tourette’s was using abusive language as an excuse for swearing and other such language, and then move onto the next topic.

  I was not satisfied with that answer.

• Rich
  May 8, 2007 at 3:40 pm

  RE an earlier comment wondering why the assessments are not as reliable or valid with adults: I don’t have the citations handy but ADOS (the current gold-standard assessment) has been tested more with children than adults, and the tests have shown greater reliability among testers (the degree to which two observers will agree) when used with children.

• Scott
  Jun 7, 2007 at 12:57 am

  One major reason for suspect reliability of the ADOS among autistic adults is suspect construct validity of the test for autistic adults. The ADOS is administered in modules from 1 to 4 that depend on development and verbal ability. Module 4 is designed with a verbally fluent 11 or 12 year old in mind. Yet, it is used with the entire population of adolescents and adults since there is no module 5 for the ADOS. I’d like to think that many (if not most) autistic adults in their 20s, 30s, and older are more adept than a 12 year old. The ADOS’s criteria suggest that any autistic adult who can: a) have a reciprocal, dynamically expanding conversation (in a rather quiet clinical setting somewhat unrepresentative of the real world), b) stims in a way that doesn’t stick out (e.g. “socially appropriate” stims, stimming more in private, less stimming when relaxed, etc.), c) has learned some nonverbal comm. strategies, and d) has a flexible imagination doesn’t have autism. The educated and knowledgeable among us know that to be bunk.

• laura
  Jun 7, 2007 at 12:01 pm

  Chuck–do more homework–your 30 year old information is now defunct. Type I means something different than it used to. Your “old” books about autism are probably defunct too.

  I am an ADULT (39) who went undiagnosed as a kid. I was in mental health care in the 1970s, but they couldn’t figure out what was wrong with me. I have recently BEEN DIAGNOSED AS AN ADULT.

  I have 3 daughters, one Aspie, one NT, and one autie. My sypmtoms as a child were almost identical to my Aspie daughters.

  Why don’t I look like I have an Autistic Spectrum disorder now? Because I have learned to adapt. Instead of being unable to fall asleep for 3 hours every night (no matter what time of night or how tired I was) I now have medicine. My anxiety is controlled in a similar manner. All those social skills? I still don’t have them. I follow rules that I have given myself (I don’t do these intuitively like an NT would). For example: My rule for not monopolizing a conversation is to allow myself to make two points, then let the other person make two points before I speak anything more than a “really,” or “how interesting.” My second rule for conversation is that conversation is like water following a river-bed–it gets stagnant if I made it stay in one place for too long. Yes, I want to talk about my favorite topic, but when the other people I am talking to move on to another topic, I should go with the flow and not say, “that’s all well and fine, but back to what I was saying before….”

  BTW: I didn’t figure these things out on my own. Other people told me them.

  I have a lot of rules like that. The problem is, when something comes up that my rules don’t cover, I screw up BIG TIME. It DOESN’T COME NATURALLY–I can’t apply what I have learned in one area of my social life to all the other situations.

  I think of autism as being socially retarded (an analogy, and not even a perfect one–not a scientific parallel–so don’t get up in arms). It will never come to me automatically, but I can find ways to work around it. The older I get, the better I get at adapting. But the autism is still there. MR people don’t start out their lives able to keep up with their peers, but after a lot of training they can sometimes learn to live independently. That doesn’t mean they are cured.

  I am autistic. Looking back at others in my family–like my dead drug-addict uncle–I can see others who absolutely went undiagnosed. Wow, his life could have been so different if he had been born today.

  Life as a kid sucked. I hated, hated, hated it. And I had great parents–very supportive, like Temple Grandin’s mom. Now I love my life–primarily because I understand why I work the way I do. Now that I know who I am I can adapt to life even better because I better understand the logic behind the rules.

  I am also grateful that I am my girls’ mother. I get what they are going through. I can be there to help them. I can tell them what a gift their way of thinking is. I can better advocate for them in the school system because I understand what they are going through.

  I fear most for my neurotypical daughter–will I be capable of giving her the skills she needs? I try very hard, because I adore her every bit as much as my other two girls. Part of what I try to do for her is rely on the advice of my NT best-friend.

  I would encourage everyone in the world who thinks they are autistic to get diagnosed so that we could once-and-for-all squash the notion that we don’t exist.

  Thanks for your time.

• Kristina Chew, PhD
  Jun 7, 2007 at 12:53 pm

  Scott, do you think it is possible for a “module 5″ (or 6, or higher?) to be developed?

• Chuck
  Jun 7, 2007 at 3:00 pm

  Laura,

  Based on what new “Updated” criteria are you defined as autistic and who diagnosed you?

• laura
  Jun 7, 2007 at 5:34 pm

  Chuck–I was definitely indicating that the Diabetes info you had was outdated. And I misread an earlier statement of yours in which you said, “Sara, I can pull out my very old developmental psychology book and re-read all of the old Kanner/Skinner/Lovaas studies to read about the underlying behavioral problems that really haven’t changed all that much since those studies.” In reading over the posts quickly I thought you were saying that you were saying something else. I apologize for that.

  I was not indicating that I was diagnosed by updated criteria.

  I was diagnosed by my therapist (a Certified Nurse Practitioner in Psychiatry and an RN) using the diagnostic criteria for Aspergers Disorder in the DSM-IV. She diagnosed my oldest daughter as well. My youngest was diagnosed with autism by a Pediatric Neurologist.

• Kristina Chew, PhD
  Jun 7, 2007 at 6:07 pm

  Laura, thanks for writing here about your children and yourself—-your girls are more than fortunate to have you as a mother. Hope the world can be a more understanding place for them to grow up in—–

• Chuck
  Jun 8, 2007 at 10:37 am

  My point is also the aspect of an artificially created epidemic by the DSM-IV. Many currently diagnosed under DSM-IV would not meet the criteria for DSM-III. Maybe you just “developed” your problem as an adult.

• Kristina Chew, PhD
  Jun 8, 2007 at 10:47 am

  My sense is that what Laura is talking about regarding herself is not a “problem,” per se.

• Chuck
  Jun 8, 2007 at 12:29 pm

  I stand corrected. The correct statement should be:

  Maybe you just “developed” your diagnosis as an adult. Also giving what Scott said previously, it may be an incorrect diagnosis.

• laura
  Jun 8, 2007 at 12:43 pm

  Chuck, if the diagnostic criteria for Autistic Spectrum disorders was expanded in DSMIV then clearly more people will be diagnosed. As for whether that created a false epidemic, I both agree and disagree with you. Yes, it takes in a huge amount of people–creating a sense of an epidemic. Do I think that people with Autistic Spectrum disorders are sick, as the word epidemic implies? No. I think the diagnoses describes an extreme end of social capability. But just as a person of African descent has health problems unique to their genetic background (like sickle-cell anemia), so I believe that there are unique health issues related to one’s autistic tendencies. I don’t think autism should be “cured,” but that its symptoms be moderated for the comfort of the person experiencing them.

  As for my diagnosis–the issues I experienced as a child were well documented by the psychiatrist I saw when I was 6. My “condition” existed whether or not the name for it did.

  As we do not yet have a monopoly on knowledge, I believe that the various diagnoses surrounding autistic spectrum disorders will continue to evolve and be refined. Perhaps Aspergers will be classified as a non-disorder again–like the classification of homosexuality–and science will start worrying less about curing autism and more about helping people live with it. But the possibility that Aspergers may someday be removed from the DSM does not mean Aspergers does not exist. Homosexuality (and the unique psychological challenges that go along with it) exists whether or not it’s in the DSM IV.

  Were the scientists who first classified Pluto as a planet idiots or are those who recently took away that classification the idiots? I would submit that neither are the idiots, but that our understanding of our existence is fluid. It would be the height of hubris to think our current understanding of autistic spectrum disorders is completely accurate. What I do think is important is that the current, inclusive definition of ASDs is drawing attention to the unique needs of a portion of our population. Who cares what the DSM ultimately reads in 100 years if, in the mean time, our children are able to live happier, more fulfilling lives?

• Kristina Chew, PhD
  Jun 8, 2007 at 5:06 pm

  And autism existed before there was a DSM to diagnose it according to…..

• Chuck
  Jun 8, 2007 at 6:39 pm

  The word epidemic implies sickness only if you choose to view it in those restricted definitions, as you seem to do. Nor do I think that ASD is an extreme end of social capabilities as there are no criteria in any DSM limiting an ASD individual’s capabilities.
  The maladies that you described are medical and have a pathology that medical science may be able to correct now or in the future. If medicine is able to “cure” pathological conditions in ASD individuals that lead to the extinction of enough symptoms to no longer qualify for an ASD, then these individuals were mis-diagnosed with a psychological disorder that masked their medical condition. These individuals would be “Pluto” people that science has released for the ASD universe.

  Homosexuality and ASD disorders are both deviations in social behavior that contribute to alternate social cultures and lifestyles. Why should one be in the DSM and not both? We should “learn to accept” to the point of dropping the diagnosis, like homosexuality? Why bother having the diagnosis at all if there is no way to correct it?

  Our current understanding of autism is as ridged as a stone axe while our list of symptoms that describe ASD are as fluid as the ocean. It isn’t our understanding that continues to change, it is the inability of the DSM to adequately define it. Your “condition” may not have reached the criteria for a diagnosis of autism and it does now. There is no way to predict that you won’t be “cured” by the next edition of DSM because you will not reach the new criteria, if there is even any there at all.

  You can’t be counted in a population that has no criteria to determine who should be included. Because you had a “condition” you were not counted in the past. If they change criteria, you may not be counted in the future. You can claim to be whatever you want, you just won’t count in these populations, just like the impossibility of counting homosexuals. Homosexuals can say they account for 90% of the population because there is no way to quantify or disqualify their answer.

• Catastrophic Thinking and David Kirby’s Global Worries
  Jun 14, 2007 at 1:11 am

  […] adds to the list of things that might cause autism and expands the reach (now global) of the “epidemic“—in what seems more and more to be a tendency “to exaggerate the discomfort that […]

• Gahana
  Jun 14, 2007 at 1:50 am

  The 1 out 150 are those who are diagnosed with ASD. Let me assure you that there are plenty who are not diagnosed and never will be. Its by Divine design. The spectrum is so huge. Any of us might be on it. Do you have OCD? Do you daydream? Do you have a hard time looking at people in the eye? Do you wear cotton clothes cause the rest of the fabric are too itchy on your body? Do you stay on topic? Do you talk too much? Are you technical? Detailed oriented? etc etc etc. Makes you think, huh? Where are the 1 out of the 150 adults living with autism???

• Jonah
  Jun 17, 2007 at 6:41 am

  Chuck, I was diagnosed with type 1 diabetes one month shy of my 18th birthday. Sorry, it is very possible to develop type 1 diabetes at any age. If it’s autoimmune diabetes, it is type 1 diabetes. This had been recognized for at least twenty years. Neonatal diabetes is a very rare form of diabetes that is often due to a genetic mutation unrelated to type 1 diabetes.
  I have a diagnosis of AS and my brother has a diagnosis of autism. My mother has a cousin with a diagnosis of schizophrenia who is not schizophrenic; we think he is another autistic.

• Chuck
  Jun 17, 2007 at 5:07 pm

  Jonah,

  I have already admitted that my information was 30 years old when I originally posted. I am approaching my 40th anniversary of diagnosis. Unlike autism, there are scientific tests to determine diabetes, which have not change in those 40 years. Similar to autism though, the treatment, not cure, has changed very little in the last 40 years. Insulin is still just a crutch that is not a cure. There is no defining cure for ASD as well.

  The diagnosis criterion for ASD has changed twice, maybe three times, as I do not know the publishing date for DSM-II in the last 40 years. Anyone can guess at another person’s psychological diagnosis. Unless you have a qualifying degree and ability to diagnose, then it is nothing more then practicing psychology without a license.

• Terri
  Jun 22, 2007 at 12:13 pm

  My baby brother will turn 50 next year. My family searched, tried, prayed and cried to find a diagnosis in the 1960’s. We finally found out he was “autistic” thanks to a sharp undergraduate student at the Speech and Language clinic at ASU. He was 14.

  I read now about all the early interventions for children, and about the high functioning adults who can participate to varying degrees, in society. I applaud those adults who have found their voice, and are using it to help others become aware of autism…..for those who cannot speak for themselves.

  I don’t hear about people like my brother. I believe many of them are institutionalized, as it was suggested we do many years ago.

  We have made a special place for him, but he will never be able to live on his own.

  I too, wonder how his life would have been different if he had been born today.

• Larry R. Vickery Jr.
  Jul 9, 2007 at 12:26 am

  I am 35 years old.Since I was a child I have suffered from severe social anxiety (which most attributed to being extremely “shy”).It is so severe that I have never been able to hold down a job because of the panic attacks that would ensue just going to a job interview,or during it,or at the latest within days/weeks of getting a job.
  Thank God I have a wonderful Christian mother whom I live with who understands (Because she suffered from severe panic attacks when she was younger,and still get’s them on rare occasions) But virtually noone else in the family understands.
  The other day I was taping “Days of our Lives” for her,and after that “All My Children” came on.I happen to take special notice in the girl who plays “Lily” on that show.The way she acted,and the things that she would say (Likes/dislikes…etc) sounded EXACTLY like me my whole life.(Hates crowds,social gatherings,loud noises-I could go on and on with the similarities).I didn’t know anything about the actress so I looked her up and found out that her name is “Leven Rambin” and plays a character who has “High Fuctioning Autism”.So I searched for “HFA” on Google,and found the “Wikipedia” page that describes it.It’s like someone wrote that article specifically about me.I have virtually every symtom.I have never been formerly diagnosed with anything (Due to severe lack of financial means).I have never seen a doctor about any of this.I have no insurance either…etc
  I found this page while researching more about “HFA” and felt the need to respond.The question was “Where are all the adults with Autism”? I believe I am one of them.
  Please pray that The Lord Jesus Christ will help me to find the funds to get officially diagnosed and to get help for whatever I have.

  Sincerely,

  Larry

• Lana
  Aug 19, 2007 at 7:12 pm

  My son, Clay is a person with autism. Clay is 23 years old and was diagnosed three years ago. He also has hydrocephalus, cerebral palsy and is legally blind in both eyes. Clay has always been qwirky, but we have always accommadated around Clay and while it was difficult, that is just the way it is. my problem now is that ALL of the resopurces that are available are for children. How can we know the amount of adults or even how they are living when all of the time, money and effort are pumped into the childre. I am certainly not saying don’t treat teh kids, but what abou the adults. After he finishes school, is he to become another person sitting around collecting SSI? What do all of the researchers and parents think is going to happen on anpther ten to twenty years. the children now will grow up and what will they do then? Clay’s great and I don’t care if he lives with us forever, buit he wants and deserves an independent life. It is so much more difficult for the adults. There is so much help avalable for children, and yet hardly a week goes by where I don’t hear about an adults killed or hurt by someone in law enforcement because they are not educated to deal with them. There are alot of issues and they are frankly overwhelming at times.

• Terri
  Aug 19, 2007 at 8:47 pm

  Lana:
  I so know and understand your frustration, and I ask the same questions myself all the time. In what area of the country do you live?

• What About the Adults?
  Aug 20, 2007 at 2:42 am

  […] eyes, asked this very question—–”what about the adults”—–in a comment on If There’s No Autism Epidemic, Where are all the Adults with Autism?. It is a questions that, […]

• Arlene
  Sep 27, 2007 at 11:22 am

  ” Where are the Adults with Autism’?
  My 27 year old Daughter is now in a group home on disability. Since age 5 we have taken her to multiple neurologists ,psychologists, psychiatrists, who all labled her with multiple diagnosis, ie adhd, depression , anxiety,etc it wasn’t till
  she was 24 that she actually was diagnosed with Aspergers & started on the correct medication to help her
  to be functional enough to get through her day. My Question is WHERE ARE THE PROGRAMS for these Adults who did not receive the intensive therapy & treatment when they were children because the diagnosis and treatment for these indviduals did not exist back then.

• Trying to Get the Story Straight: Autism, Mercury, and Making History
  Jan 9, 2008 at 3:55 am

  […] doing funding an epidemic denier”) by the end of his post. (I also note that I co-wrote this essay with […]

• Ego Sum: Think Differently About Autism
  Feb 5, 2008 at 5:34 pm

  […] possible. Even as wee keep going round in endless orbit about mercury in vaccines, Charlie is here, adults with autism are here, and have always been and—-for me, as I think ahead to our life with Charlie—will […]

• RM212
  Mar 16, 2008 at 11:29 am

  We’ve been here all along.
  Where are the adults? My grandfather was born in the late 1800’s, my father in the 1920’s, I in the 1960’s and my son in the 1990’s. We all share the characteristics of Asperger’s (with it’s obvious genetic component). My grandfather farmed and treated animals as the local vet w/o the formal schooling, my father worked for the FAA, I work in Computer Tech Support and my son composes classical music. All of us qualify as odd, eccentric etc. but meld with society. I went to public school and was accepted by my peers as “very shy”, at home “stubborn” was added. I am the first in the line to realize the “diagnosis” and have provided for my son the insight I wish I could have benefited from. “Where are the adults?” We are right here beside you, having adapted, compensated and forged our own path to a successful life.

• I have one in my house!
  Mar 16, 2008 at 2:33 pm

  I have a husband who falls on the AS, and 2 boys with ASDs.

  So, what about the incidence of Autism co-occuring with TYPE 1 Diabetes? My son has both Autism and Type I Diabetes. I believe there is a connection between them, possibly auto immune.

  The DSM adapts to reflect new research, new knowledge. IMHO, it does not mean that a condition only exists if it recognized by the DSM.

  My sons had Autism before they recieved the diagnosis of Autism, so it is concievable that there are many undiagnosed adults in our society who have an ASD.

  I think I have run into several people that fit the bill, but for whatever reason, diagnosis and more important…INTERVENTIONS & TREATMENTS….have evaded them.

  Does that make them any less Autistic?

• H6
  Apr 7, 2008 at 10:40 am

  HHV-6 has been linked to both autism and Type 1 Diabetes. Finding both in the same person may be another reason for the autism community to take a close look at HHV-6.

• p. j. ferreira
  Apr 7, 2008 at 11:33 am

  I spent a miserable childhood wondering what was wrong with my older brother. ( a genius, but with antisocial disgusting behaviors) As an adult nobody could understand how he could “disown” our mother ( and me ) at the whim of his crazy wife, but then I read a story about a man whose brother had asbergers ,and a light went on. I don’t revile him anymore and finally have love and compassion after 60 years. He doesn’t have any children and his wife has cut him off from our family for 30 years, but I have been sending him photos of my children and grandchildren. Maybe something will “click” someday. p.s. why did his wife cut him off from us? she’s mentally unbalanced. the day before their wedding the minister took my parents aside along with my brother and advised him not to marry her do to many years of mental illness. my brother was 28 and he stated that our father and our grandfather both got married at 28 , so he must too. my brother is an electrical engineer, his wife is not capable of holding a job.

• HHV-6 linked to Multiple Sclerosis « Being Ammey
  Apr 7, 2008 at 12:58 pm

  […] linked to Multiple Sclerosis 07Apr08 There was a response to day to a comment I made on an Autism Vox blog entry titled If There’s No Autism Epidemic, Where are all the Adults with […]

• Wolf
  Apr 13, 2008 at 9:53 am

  I am an autistic adult. I have high functioning autism. I was first diagnosed in the late spring of 1968. I learned to live with high functioning autism back when there were hardly any professional services for us.

  I barely survived. I had many fights in school because I was “different” from all the other kids. There were so many things about social skills and this human reality I did not know about. Back in my day you just suffered in silence. Autistic’s like me born in the past unenlightened times ended up misdiagnosed in mental hospitals, locked up in prisons. Most high functioning autistic’s like me who were able to suffer through school, avoid the mental hospital and prison found jobs where people skills were not required. Some high functioning autistics are able to fake just enough people skills to get by in a regular job by the skins of our teeth myself among them.

  Adult Autistic’s are smart motivated people and hard workers many of whom enjoy the work loners are drawn to. I work with computers because, a computer does not demand I have great interpersonal skills. People who need their computer to do their job don’t care that I might be an odd ball weird freaky little fellow that would make Gomez Addams look perfectly normal.

  Older Adult Autistics can be divided into two sub-groups those who could adapt and those who could not adapt to this neurotypical society. Adult Autistic’s who could not adapt to life in this neurotypical world are in mental institutions, prison, on welfare or in an early grave. Adult Autistic’s who could adapt went on to find the perfect job that allowed them to maximize their autistic strengths while keeping autistic demons at bay.

  Being autistic while working in this neurotypical world is a lot like being a werewolf. Smart, cunning Adult Autistic’s know society give’s you a free pass if they never see any of your werewolf reversion like meltdowns, tantrums and other distrubing autistic behaviors.

  Adult Autistic’s are like werewolves we are smart. To survive Autistic Adults have practiced from early ages to supress the autism inspired natures that drew unkind, cruel sadistic human bullying, teasing responses growing up. You do not see autistic adults not because we do not exist but because, we have learned to walk among you unseen. Those odd autism inspired things we do that make you neurotypicals uncomfortable are expressed at times when your prying eyes will not see us.

  Adult Autistic’s we are your friends, your neighbors, we are the nerdy specialists that fix your computer or balance your books, we clean your office, we prepare your food, we are everywhere and nowhere. Adult autistics like mythical werewolves walk among you in the workplace or public places by day and revert to a less pleasing, less socially acceptable being by night. Autistic Adults are turn off that person we try to be during the day while we recharge our emotional, physical and spiritual reserves a time when we are better off left alone. So to answer where are all the adult autistic’s we are all around you!

• Barbara MacArthur
  Apr 15, 2008 at 2:23 pm

  I am an Asperger’s mum of a son who was diagnosed as profoundly autistic when he was a child. At the time the following thoughts popped into my head, as the medical people looked so solemn:

  They told me you were Different - Autistic
  I told them I was optimistic
  How could they know
  I love you so
  Because you are - DIFFERENT!

  My son will be 54 in December. I am 81. In retrospect I realised that my dad, who was considered very eccentric (and died aged 93 in my home) had all the symptoms of autism, though not so severe as my son. I was told by doctors that my son was a ‘write-off’. He could not speak until he was 9 or 10. We have to smile now as he became hooked on computers some years ago and graduated from University in computer science. By the way, none of us ever had MMR jabs.

• Norah
  Apr 15, 2008 at 4:06 pm

  To Barbara: my grandfather who is around your age, I think is also autistic. He does show all the signs and has some very obsessive hobbies :D. I don’t believe he ever had his shots either.
  Further back, there were my mother’s grandparents and great-aunts who were ‘loonies’ too. Back then there was no autism diagnosis, but many of them were considered crazy. Aunts who lived with their mothers until those died, and didn’t want to go out on the street. Great-grandparents who were considered extremely excentric and unconventional, blunt, and seemingly unaware of any social rules, etc. I think in our family such people were mostly looked after by family instead of sent away to institutions, and either way society might not have noticed them much. Some were probably just considered weird, eccentric, rude, extremely shy or slightly unstable. I’m sure if they were still alive now they too would be able to tell stories of family members even further back who were crazy or had other labels. I don’t think that the ones of my grandfather’s generation and further back had had any vaccinations. My mom too, must not have had all of them, maybe none, since she got the measles as a child.

• Kristina Chew, PhD
  Apr 15, 2008 at 4:32 pm

  thanks Barbara and Norah—-think my mother’s father had Asperger’s. He was from rural China (as are all of my grandparents)—-eccentric, really smart at math, somehow went to UC Berkeley and studied civil engineering in the 1920s (meaning he had to be able to know English well enough……..) — was a bridge inspector for years for the state of CA and climbed on the bridges, loved to be near the ocean. Was _not_ easy to get along with.

• Chris Chase
  May 6, 2008 at 3:29 pm

  I have Aspergers based on everything I’ve read and after reading Tony Attwood’s books. I fit the description so well in almost every way.

  However, as an adult I’ve learned to adapt and cope so well that my psychologist hesitates to give me that diagnosis. Instead he says Anxiety Disorder with OCD with possible Aspergers at my suggestion after I researched Aspergers and studied and met others with Aspergers. I have the symptoms of Aspergers and see so many things in common with other people who also Aspergers.

  One way I know, is that Neurologically Typical people tend to really annoy me, but I often notice that I am much more comfortable around and more tolerant of people I know or who I suspect has Aspergers or some other mental challenge, limitation, or unusual difference. I especially like them when I see that they do not communicate so much using their eyes, but are instead verbal communicators. I tend to like them a lot more when they communicate that way.

  However, I’ve just learned to fake social interaction really well and many years of very frustrating and painful trial and error.

  I have Aspergers, I’m not mentally insane. I try not to make the same social faux pas over and over again. That’s why I’ve improved over the years. But, I still find typical many social manners and social behavior to be, unnecessary, time consuming, and annoying. Deep down inside I sometimes really resent having to conform with regard to social mannerisms and behavior in the company of others.

  I look at people but most of the time I am not really looking at them. I’m looking through them or at something just above their eyes such as their eyebrows, or the color of the iris, some physical detail. But, I’m not really looking at them to assess how they are responding. I can now read someone by looking at them, their body language, and their eyes. But it takes some metal adjustment in my part, I have to concentrate and focus on it, and it only has gotten somewhat easier to do this with years of repetition.

  It takes much more concentration and mental energy to actually look at someone. When you are actually looking at someone it makes it hard for me to focus and keep my thoughts straight. It’s like looking at someone, talking to them, and thinking and processing all of it the same time is just a little bit difficult to do. So I fake it most of the time, I turn it on and off based on whether I think I actually need that information or not.

  I’m so good at it now that I appear to not be Asperger’s. But, it’s what I’m still thinking and processing inside mentally which tips me off that I still process information more like a person with Asperger’s would. Maybe I’m somewhere in between Aspergers and neurologically typical?

• donald savitz
  May 12, 2008 at 3:27 pm

  This may answer where the adults are. Though the years the rate was 1 in every 10000 persons may get autism, the in 1994 something changed that by 2004 the rate went to 1 in 150 so most of the persons at this are mainaly in there teens at this time.

• donald savitz
  May 12, 2008 at 3:35 pm

  I thank think that autism is caused by the fluoride being put into the water supply then when the child is gets its vaccine shots it is like a double wack to the litle chld. Kind of like the last straw to that camels back.

• Joseph
  May 12, 2008 at 3:41 pm

  This may answer where the adults are. Though the years the rate was 1 in every 10000 persons may get autism, the in 1994 something changed that by 2004 the rate went to 1 in 150 so most of the persons at this are mainaly in there teens at this time.

  That is falsehood, though an oft-repeated one. Where do you get the rate 1 in 10,000? Original source please.

  The earliest epidemiology gives a rate of 4.5 in 10,000 (Lotter, 1967). That’s more like 1 in 2,000. Of course, this is not the prevalence of autism as defined today. It is the prevalence of Kanner autism as operationalized by Lotter, roughly,

  1. Profound lack of affective contact.
  2. Repetitive rituals which must be of an elaborate kind.

• Cliff
  May 12, 2008 at 3:50 pm

  And, again, you will find many discussions on this site for your convenience that discuss the issues regarding diagnostic standards and social context with the numbers that then are produced. It may be helpful to look through those in terms of the numbers being definitive (or a lack thereof).

  Cliff

• Barbara MacArthur
  May 13, 2008 at 6:01 am

  Dear Donald Savitz - regarding your comment on May 12, I do not agree. You see where I live there has never been fluroide in the water supply. My dad was autistic, I am Asspergers, ny son is profoundly autistic. Also we never had vaccine shots.

• donald savitz
  May 14, 2008 at 1:47 pm

  Hi Joseph, I could not find the that site for the information on the 1-10000,so we can use your number of 1-2000 to see how many adult persons there should be out there with autism. It might not be as many as tou think. You will have to start in 1933 for the first ones that Dr. Asperger diagnosed in Baltimore im 1943. I would like to see your idea on the amount that may be out there. The ones born 1988 are stell in there teens so we can not count them. What I stell went know is how we got from 1-2000 to 1-150 in 6 years and got 25000 each year sence. I hope that it isn”t that we can diagnose then better.

• donald savitz
  May 14, 2008 at 2:31 pm

  Hi Barbara: I am sure that there may be other things that cause autism. Your father may have been born around 1900. What did he do for a living and did he live in acity or on a farm? You said nothing about your mother was she also have autism? What did she do for a living that may brought her into contact with something that may caused you to become autistic. Like a heavy metal like lead or some thing like that. Why didn”t get the vaccnations, because most of the vaccines were out at you time that my not been there for you father.

• Cliff
  May 14, 2008 at 2:33 pm

  “Hi Barbara: I am sure that there may be other things that cause autism. Your father may have been born around 1900. What did he do for a living and did he live in acity or on a farm? You said nothing about your mother was she also have autism? What did she do for a living that may brought her into contact with something that may caused you to become autistic. Like a heavy metal like lead or some thing like that. Why didn”t get the vaccnations, because most of the vaccines were out at you time that my not been there for you father.”

  Begging the question pretty badly here…

  Cliff

• Joe
  May 14, 2008 at 3:37 pm

  Donald,

  Kanner’s research was released in 1943, Asperger was in Austria, trying to keep the Germans from discovering his research and sending his subjects to Concentration camps for being different and he started his research in the 1930’s. You seem to have lots of trouble with basic facts.

  And seeing as how my family has been autistic for over 100 years, and it keeps showing up in each generation, I don’t buy that something made me autistic other than the genetics that went into making me. Even if I’m the first one with the correct label, my grandpa is not any less