Where are all the adults with autism?
Where are all the adults with autism?, if there’s no autism epidemic?
Kathy Marshack, a psychologist in Vancouver, Washington, has Asperger’s and says that her late mother and her adopted daughter also have it. William Loughman of Berkeley, California, is a retired director of a hospital cytogenetics lab and has six grandchild. Three years ago—at the age of 71—-he found out that he has Asperger’s syndrome.
Those adults with autism are right here, working and living among us.
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POSTED IN: Adulthood, Asperger's Syndrome, Epidemic
51 opinions for Where are all the adults with autism?
mcewen
Jul 24, 2007 at 1:44 am
May we conclude that a diagnosis of autism equates to longevity?
I pretend to be a scientific person!
Cheers
AnneC
Jul 24, 2007 at 2:17 am
Ha! Wouldn’t that be nice…longevity is one of my main special interests anyway.
Kristina Chew, PhD
Jul 24, 2007 at 2:19 am
Perhaps we might propose a toast!
Chuck
Jul 24, 2007 at 7:56 am
Another DSM-IV autistic, where are all the DSM I-DSM-III autistics? To do a fair comparison, you need to use a standard benchmark that can be applied to every individual.
dkmnow
Jul 24, 2007 at 8:07 am
So, the Marshack has finally decided that she’s an aspie too.
Surely a savage indignity, seeing as half of what she has written about AS has been all about what a bunch of evil, cold-blooded, abusing monsters aspies are…
dkmnow
Jul 24, 2007 at 8:15 am
Wait a minute — I’m not seeing in the article where Marshack identifies herself as an aspie…
So maybe she’s still safe, and can go right on with her “othering” without any risk of having to bear the consequences of it herself.
David N. Andrews M. Ed. (Distinction)
Jul 24, 2007 at 8:33 am
“Surely a savage indignity, seeing as half of what she has written about AS has been all about what a bunch of evil, cold-blooded, abusing monsters aspies are…”
So she IS what we all thought: an evil, cold-blooded, abusing monster.
That’s as may be.
She’s no bloody Aspie as far as I am concerned.
dkmnow
Jul 24, 2007 at 8:40 am
“She’s no bloody Aspie as far as I am concerned.”
Heh. I’m forced to agree. In my e-mail exchange with her, she was far too smarmy and manipulative to be suspected of being on the spectrum.
passionlessDrone
Jul 24, 2007 at 9:15 am
Psychologists, directors of hospital units, career military men, mothers of three. These are exactly the kinds of people that immediately come to mind when I think autism.
None of these adults got ANY services during their childhood; it really makes me think that maybe we should stop bothering with speech/occupational therapy, ABA, or even have specialized IEPs / classrooms for them. After all, the millions of autistic adults hidden in plain sight among us have done just fine.
Yawn.
- pD
Kristina Chew, PhD
Jul 24, 2007 at 10:00 am
I’m not so sure that we can say they have “done just fine.” Maybe they have managed, but that doesn’t mean some difficult things have happened along the way that did not have to.
Kristina Chew, PhD
Jul 24, 2007 at 10:03 am
dkmnow, you are right—-she notes that she thinks the condition is “widely undiagnosed” and post-diagnoses her mother. Thanks!
passionlessDrone
Jul 24, 2007 at 11:29 am
Hi Kristina -
“I’m not so sure that we can say they have “done just fine.” Maybe they have managed, but that doesn’t mean some difficult things have happened along the way that did not have to.”
These are people that have had spouses, children, and long careers. They live independently. Apparently, they understand how to speak, read, and even seek out a diagnosis. They can make quips about being on the spectrum:
“Holliday Willey says she fails to understand concern about overdiagnosis. “The idea that too many are being diagnosed — so what? I’d rather gather in more folks than leave one out.”
“Those adults with autism are right here, working and living among us.”
If everyone with autism faces the kind of future as the people described in this article, what is everyone so worked up about? Why is early intervention deemed critical by every authority? Why are people bankrupting themselves to pay for ABA? Why are people moving to different areas to get into a different school district? To relieve their children from having potentially difficult things happen to them?
Of course, if we were to admit that the challenges faced by the people described in this article, while ‘difficult’, are miniscule compared to what low functioning autistics will face, early intervention, moving, and the rest don’t seem as silly a move. But if we accept this, grouping everyone together in order to disprove the notion of an increase in autistic disorders becomes absurd.
Apples and oranges.
- pD
Kristina Chew, PhD
Jul 24, 2007 at 12:04 pm
As you know, I’m in favor of EI and ABA (and stand by the Lovaas agency, who provides Charlie’s home therapy). But the article presents only a few facts, of each of those person’s lives. What kind of suffering might have happened—depression, relationships broken, jobs lost, even one’s health affected? How are measuring happiness and independence?
I do think that a group home is the most “independent” kind of situation for Charlie. But how many people ever live fully independently—not my in-laws, for sure. How do we know that adults with undiagnosed AS may not have benefited from more understanding of their neurological difference, and even from the kinds of social skills classes that are offered to children; from knowledge of how to set up schedules and structures, to help them deal with transitions rather than flailing? How do we know that difficulties with attention might not adversely affect an adult with undiagnosed AS who is, for example, driving a car and tends to get fixated on things other than driving?
I don’t think we can qualify anyone’s suffering as “miniscule” compared to someone else’s just because someone has, for instance, the ability to talk or go to college.
Marcie
Jul 24, 2007 at 4:50 pm
I’m in favor of basic social skills (for instance, like how to get along with different types of people) being taught to *everyone*.
Sarah
Jul 24, 2007 at 6:21 pm
My father-career Naval officer. Expert in crypto-his contributions are still highly classified.
My uncle. Artist. Now retired. His work hangs in the White House and the Met.
Their father was highly mechanical and had a train perseveration that led him to a 35 year career with Mack trucking.
I am employed in industry. I cannot say here what it is I do. Maybe someday I will come forward-but I am currently bound by federal law to be discrete. Suffice to say, I get sent to do tasks that require clear thinking not emotions. Some might say….dirty work. I am not allowed at this time to write a book or any tv scripts as based on my employment among other things.
This whole thing of poor poor Aspies makes me laugh and laugh. Oooops! I should not be doing that now should I!! Tsk Tsk….showing humour and emotion……..
Great post as usual, Dr. Chew.
~Sarah
Kristina Chew, PhD
Jul 24, 2007 at 7:26 pm
Marcie, yes, we *all* could use a refresher in the social skills department!
Marcie
Jul 24, 2007 at 7:33 pm
Maybe I should have specified I was thinking of school age kids, “everyone” meaning “everyone as they go through school” - but you are right.
Kristina Chew, PhD
Jul 24, 2007 at 7:49 pm
Having watched the “behaviors” of “typical” school age kids around the pool, in front of the school building before and after school—-I think it’s good to point out the need for social skills teaching.
M'sDad
Jul 25, 2007 at 11:06 pm
I think passionlessDrone brings up a worthwhile point - the DSM-IV definition of autism (and probably even more so the way it’s been applied over the last few years to encompass a rather wide spectrum) certainly includes individuals with widely varying ability to cope with the variety of demands that life in modern society seems to require on a day-to-day basis. I take Kristina’s point that few (if any) adults ever live “independently” — and maybe there is just a difference of degree between someone who has been able to “pass” as “normal” (scare quotes intended) for decades and someone who requires assistance to perform routine tasks such as washing, eating, getting dressed, etc.
What I would find really helpful (but I’m not aware of anything that remotely comes close — can someone point me to one?) is a study that recounts how individuals who currently are at the level of functioning that seems to be implied in the USA Today piece manifested their autism at the age of four, five, six, ten. Granted that every case is different, if indeed we were able to read about (significant numbers of) individuals who were non-verbal, not potty-trained, unable to focus long enough to get dressed, in serious abdominal distress or exhibiting self-injurious behavior, etc at the age of six or seven — but as adults display the kinds of coping mechanisms (perhaps obtained through significant effort and distress, as Kristina reasonably suggests) that the USA Today article describes — then it would perhaps be easier to make the case to parents of autistic children that they should not scramble for a “cure” but rather assist their children in growing and learning at the pace that is appropriate for autistics (as opposed to “neurotypical” children).
I remain confused, and thus agnostic, about how the “fuzziness” of the autism-spectrum diagnosis affects arguments about “epidemic” versus “improved consciousness”…
Kristina Chew, PhD
Jul 26, 2007 at 1:21 am
M’s Dad, I am now meditating on your last paragraph—I think being an agnostic is a good way to consider all of this. I have to say, I am sometimes never quite sure of what I see and what I remember that I saw: I know Charlie had no speech, but there were those 4 sounds he sort of used in certain contexts (sort of). There was some nascent imitative ability (Jim raised his arms over his head; Charlie learned to raise his—-then Jim tried two arms and Charlie kept only putting one up; in fact, he got a bit insistent on putting up that one arm sometimes when Jim walked into the room.)
Could one say that some “fuzziness” remains in autism diagnosis?
Chuck
Jul 26, 2007 at 9:02 am
M’sDad,
The criteria you listed would meet the DSM-III criteria. A simple answer to your question would be to research those diagnosed under DSM-III and ask “Where are they now?”
Chuck
Jul 26, 2007 at 9:11 am
M’sDad,
The answer to your “fuzziness” would also be relativly simple. Ask the doctors that have diagnosed ASD individuals under DSM-IV criteria if the same individual would be diagnosed under DSM-III criteria. If the number of people diagnosed under DSM-IV only increase more then it is “improved consciousness”. If the number of DSM-III and DSM-IV diagnosed increases more then the DSM-IV only, then it is an “epidemic”.
anon_please
Jul 26, 2007 at 11:20 am
“Where are they now?”
Many, many in So Cal get services via the Dept of Rehab (incl. help all thru college); another large portion works at JPL.
Also, as far an the past goes, I think some here could be too young to be aware how common it used to be for kids to see psychiatrists and take meds now not prescribed for kids. All this changed when HMOs took over medicine. Kids saw shrinks and no diagnosis was required.
Those of us who can recall “certain” tests given by psychiatrists, are aware of what those test results would mean today — but they meant something more amorphous decades ago.
Chuck
Jul 26, 2007 at 11:47 am
So “Where are they now?” cannot be answered due to professional misconduct by psychological professionals in the past rather then “improved consciousness” of those diagnosed today. In THAT profession, that is a poor excuse.
anon_please
Jul 26, 2007 at 11:53 am
And the “professional misconduct” was what?
Chuck
Jul 26, 2007 at 12:05 pm
Not diagnosing an observed problem in the office.
anon_please
Jul 26, 2007 at 12:27 pm
The issues were treated and there didn’t need to be an exact name written on a form going to a secondary party. It was actually better and faster treatment than today. No professional misconduct whatsoever.
passionlessDrone
Jul 26, 2007 at 12:50 pm
Hi M’sDad -
“Granted that every case is different, if indeed we were able to read about (significant numbers of) individuals who were non-verbal, not potty-trained, unable to focus long enough to get dressed, in serious abdominal distress or exhibiting self-injurious behavior, etc at the age of six or seven — but as adults display the kinds of coping mechanisms (perhaps obtained through significant effort and distress, as Kristina reasonably suggests) that the USA Today article describes — then it would perhaps be easier to make the case to parents of autistic children that they should not scramble for a “cure” but rather assist their children in growing and learning at the pace that is appropriate for autistics (as opposed to “neurotypical” children).”
I find it extremely unlikely you will find such a study, or such a population. Why? Becuase THEY WOULD HAVE BEEN DIAGNOSED WITH SOMETHING if they had this type of behavior at the age of 7.
The entire notion that all of the ‘autistic adults’ like the ones mentioned in the article are part of the invisible autism population relies on the faulty premise that is was once impossible to diagnose a seven year old who could not use a fork, but it is now possible to diagnose a seventy year old who got a divorce and doesn’t form relationships well.
Lets assume that the people in this article did fit the criteria you described when they were six. Wouldn’t the fact that these people overcame these signficant obstacles without any treatments at all be a bigger story than the fact that they’ve received a mid life diagnosis? These people have plenty of memories; yet for some reason they have decided to tell us that they found different reasons to enjoy tea parties as opposed to the issues involved with not being toilet trained at the age of seven.
Take care.
-pD
Chuck
Jul 26, 2007 at 3:54 pm
“The issues were treated and there didn’t need to be an exact name written on a form going to a secondary party.”
This is the EXACT problem that created Cho Seung-hui.
Yes, it is professional misconduct.
anon_please
Jul 26, 2007 at 4:50 pm
The issues were treated, in the cases I’m speaking of: Treated properly and according to ethical medical standards. In many cases, treated and resolved via good meds not prescribed much today.
So, NO CHUCK, not even remotely close to what happened with Cho.
It was most certainly _not_professional misconduct in the cases which I was discussing.
But keep spinning Chuck, because you’re determined to take what I’m discussing here as something to attack…..
Amanda
Jul 26, 2007 at 5:10 pm
“THEY WOULD HAVE BEEN DIAGNOSED WITH SOMETHING if they had this type of behavior at the age of 7.”
No, they wouldn’t. You’re assuming everyone everyplace has always operated under the same level of medicalization of behavior and the same cultural contexts. These are not good assumptions.
Amanda
Jul 26, 2007 at 5:15 pm
“These people have plenty of memories; yet for some reason they have decided to tell us that they found different reasons to enjoy tea parties as opposed to the issues involved with not being toilet trained at the age of seven.”
Maybe because not everyone wants to discuss their toilet-training habits in public? I know people who were not toilet-trained until much later than seven, people you’d write off as “aspies” no doubt given their speech histories and such, who are ashamed of this and won’t talk about it. For good reason.
M'sDad
Jul 26, 2007 at 5:31 pm
Amanda said:
“No, they wouldn’t. You’re assuming everyone everyplace has always operated under the same level of medicalization of behavior and the same cultural contexts. These are not good assumptions.”
I take Amanda’s point. Of course the response to certain behaviors depends on cultural context and expectations. Without necessarily assuming that anyone meeting the DSM-III criteria would have been diagnosed, I personally would be curious to know if the individuals featured in the USA Today story — who presumably were *not* diagnosed as being on the spectrum, at least according to DSM-III criteria — would in fact have met those criteria at a young age (say, 6 or 7, since that is M’s age and xe meets those criteria). I agree with Chuck’s point that it would be interesting to know more about those who *were* diagnosed according to DSM-III criteria, though I can imagine that — because of issues of privacy, etc — it might be difficult to gather data on a significantly large group of individuals to make the study statistically significant. Perhaps it would be just as easy (or difficult?) to conduct a study on how many individuals who have been diagnosed as autistic according to DSM-IV would also have been diagnosed as such under DSM-III. At least one could then determine whether the DSM-III percentage-of-population has remained more or less steady (giving credence to the “increased detection / medicalization du jour” argument) or whether it has increased significantly (giving support to the “epidemic” argument).
anon_please
Jul 26, 2007 at 5:41 pm
Hi M’s Dad:
“I agree with Chuck’s point that it would be interesting to know more about those who *were* diagnosed according to DSM-III criteria, though I can imagine that — because of issues of privacy, etc — ”
It’s going to get more and more difficult for those who had childhood “issues” or more amorphous dx’s AND who got treatment from good, caring MDs AND are doing well today to even approach discussing their histories with anyone when youv’e got a guy like Chuck who wants to put us in the Cho category.
Thanks, Amanda, for your wise and succint comments.
Anon for good now.
Kristina Chew, PhD
Jul 26, 2007 at 6:45 pm
Chuck, have you read Unstrange Minds?
Not to perseverate about the toilet-training issue, but not being trained in that regard is, of course, not on any version of the DSM criteria.
Kassiane
Jul 26, 2007 at 6:50 pm
I’m pretty sure it was decided that the whole autism thing and Cho was a misquote anyway?
I was dx’d in 87. Do the math. Anything else in my present, past, or future requires a much more civil discourse than this one. I do know that my toileting habits, or anyone else’s that a poster is not directly responsible for, aren’t that poster’s business. (I also know that kids with sensory issues toilet training themselves VERY young is documented, it’s in Bryna Seigel’s first book-the pessimistic one). If you aren’t doing the wiping, it ain’t your business to know who IS.
As for communication-irrellevant, most kids are only given speech and “I WANT” PECS cards as options. Not real meaningful if you have apraxia of speech, is it?
And the USA Today article didn’t even TRY to say all autistics do as well as the examples given, just that many people are missed, which is true. To suggest that means anyone quoted wants to throw out early intervention is ludicrous.
passionlessDrone
Jul 26, 2007 at 7:17 pm
Hi Amanda -
“No, they wouldn’t. You’re assuming everyone everyplace has always operated under the same level of medicalization of behavior and the same cultural contexts. These are not good assumptions.”
Lets forget ‘formal diagnosis’ in terms of IV,III,II,I or whatever for just a minute. We can all agree that people were autistic before the DSM came along.
Lets pretend it is 1960 America. I have two children; one that is six and one that is eight. The eight year old can talk, use a fork and spoon, doesn’t injure themselves, doesn’t line things up incessantly, and looks others in the eye. The six year old has no words, eats with his hands, bangs his head all day long, never looks others in the eye, and does line things up incessantly.
I take my children to the doctor. Even without the DSM to help me, I think that there is a difference between my two children. I ask the doctor, is there something ‘wrong’ with my six year old? He seems quite a bit different than my eight year old; and in fact, every other child I have ever met.
The doctor tells me, ‘Nope! Both of your children are completely normal! If I had some type of professionally refined label to apply, I might be able to give you some type of diagnosis, some information as to what, if any difference there is between your six year old and other children. However, as it stands now, with our level of medicalization of behavior and cultural standards, I can’t define any difference between your six year old and every other child I see.”
Those are some poor assumptions.
- pD
Interverbal
Jul 26, 2007 at 8:03 pm
Hi PD,
The child you described probably would have been given some diagnosis.
But based on you description it could have been any number of things. Childhood schizophrenia comes to mind quickly. In the 60s many programs didn’t distinguish between childhood schizophrenia and autism. Even Bernard Rimland had little problem classifying autism as a psychosis (if a distinct one). Here is a fascinating article that is a virtual gold mine.
http://www.springerlink.com/content/x04185jk6265v933/
Chuck
Jul 26, 2007 at 8:05 pm
“…when youv’e got a guy like Chuck who wants to put us in the Cho category”
Anon, if you wish to put yourself it that category, I cannot stop you, but don’t twist what I have said to further whatever agenda you may have.
I did not bring up Cho because of the misdirected autism issue. I brought up Cho because of the multitude of psychological professionals in Cho’s life who, as you so adequately put it said, “The issues were treated and there didn’t need to be an exact name written on a form going to a secondary party.”
The governor and the Secretary of the Department of Mental Health, Mental Retardation, and Substance Abuse were told of these problems days after the shooting. A recent committee confirmed these problems. It took this committee months and wasted tax revenues for something I told them for free days after the shooting.
Interverbal
Jul 26, 2007 at 9:02 pm
Chuck,
Perhaps you can clarify a point. Are you suggesting that a mass murderer’s actions are understandable, because he was autistic?
anon_please
Jul 26, 2007 at 9:21 pm
Chuck: You are communicating exactly as a sociopath. Period.
Kristina Chew, PhD
Jul 26, 2007 at 9:36 pm
Because of the uncertainties about Cho’s diagnosis, I don’t think mentioning him sheds the most light here.
anon_please
Jul 26, 2007 at 9:51 pm
Thank you Kristina. The question was asked: “Where are all the adult autistics?” I was attempting to explain. For decades there were other diagnostic categories, which I will go into at a later time, that were more generically-named “conditions”. I was speaking about how many, who are now dx’d with some ASDs, PDDs and Aspies, would have been categorized then and the type of treatment that would have followed. I have not seen much discussion of this topic. Decades ago, insurance did not cover any trips to a psychiatrist. So, if one did go it was a strictly private affair. I am familiar with those older diagnostic terms — and have not seen them mentioned.
M'sDad
Jul 26, 2007 at 11:38 pm
anon and interverbal - thank you both for very helpful clarifications…
Chuck
Jul 27, 2007 at 7:21 am
Anon,
I have merely demonstrated the sociopathic tendencies of many psychological professionals and state agencies using the same treatment strategies that you prescribed in your post.
Chuck
Jul 27, 2007 at 7:33 am
Anaon,
Your opinion and mine on what is an acceptable psychological diagnosis and treatment obviously vary widely. I sincerely doubt that we would ever come to a consensus on what is professional misconduct. So unless you have a PHD or MD in a psychological field, the only thing we have is opinions. Period.
passionlessDrone
Jul 27, 2007 at 7:38 am
Hi Interverbal -
“The child you described probably would have been given some diagnosis. ”
Exactly my point. The people in the article presented never had any diagnosis at all.
Thanks for the link; the point that the diagnosis of neurological disorders in the past (and no doubt in the present) shows variability is well taken.
Take care.
-pD
Interverbal
Jul 27, 2007 at 9:05 am
PD,
“Exactly my point. The people in the article presented never had any diagnosis at all.”
Yes, but remember. The description you offered, describes only a minority of the 1 per 166.
The vast bulk of “autism”, is not Autistic Disorder, But PDD-NOS. This is a consistant finding in the epidemiology.
But the description you offered wouldn’t even be a good description of all kids with autistic disorder.
Also, the kid you described may not even be autistic. There are other disorders that also have the traits you cite.
Amanda
Jul 30, 2007 at 9:56 am
Well… for one thing, you’re not necessarily going to be asking the doctor for advice on that 6-year-old. Because you might not be thinking of it as a medical issue at all. The whole concept of developmental milestones and specifically not meeting them as a medical issue were not as widespread in the past as they are now. You might instead be asking your family for advice. You might in some places be asking a religious figure of some kind for advice. Or not even thinking to ask anyone’s advice at all. Or fearing what will happen if you did ask advice given what was done to children like that in whatever particular time period we’re dealing with. And so on and so forth.
You’re making the leap that a doctor in a particular time period and culture is a product of that time period and culture, but you’re not making the leap that a parent is also a product of their time period and culture and that parents themselves have had widely varying reactions (based partly on culture) to the same sorts of people.
Sort of like when I had a conversation at one point with someone who insisted that such-and-such sort of person just obviously would’ve been “in special ed”, and I pointed out there’s not necessarily going to be such a thing as special ed in, say, a one-room schoolhouse, or an area where formal education of any kind is either non-existent or entirely optional.
Marla Comm
Aug 25, 2007 at 8:53 pm
I am one of those autistic adults whose needs society isn’t prepared to address. Diagnosed with high functioning but severe autism at age 3 and living with the additional challenges of Tourette Syndrome, personality disorder, severe sensory integration disorder and coordination deficits, I am now in my early fifties. My parents went into denial when I was diagnosed, raised me as a “normal” child, enrolled me as a regular pupil in a public school, refused to acknowledge my special needs and punished me for autistic behaviors like not making friends and failing to develop normal childhood interests. Expecting me to become a typical adult with husband, kids and a career, they didn’t even think of providing for my future needs as an adult.
After muddling through a difficult childhood enduring verbal abuse at home and failing at everything I was forced into, I am struggling to keep up with the same responsibilities as a typical adult with next to no support at all. Although I can look after basic needs like hygiene, poor coordination, visual-spatial skill deficits, low frustration tolerance and sensory irritability conspire to make all household chores next to impossible. Years of mounting frustration left me unable to even tolerate these chores without blowing up. Supervisors are satisfied with my performance in the regular part time medical library and records position I hold, but the stress of dealing with difficult co-workers and the other trials that come with the territory of a regular workplace is wrecking my nerves.
Life as an autistic adult is even more challenging here in Montreal, an especially troubled, abrasive and fast-paced big city crowded with intolerant people. Like all cities in Quebec, Montreal is now mostly French. The last thing I, a person whose grip on communication is weak to begin with, need is to have a foreign language shoved down my throat. Most people here speak no English or refuse to do so. It may tempting to advise me to learn French, but that’s easier said than done when you have to try learning a language even NT’s find hard with learning difficulties like mine.
Born without the ability to adapt to change, I am not coping with life in this topsy-turvy millennium at all. With the kinds of changes and disruptions that always upset me happening more often, I get more meltdowns than I used to. The cumulative stress of responsibilities that exceed my capability, aging and difficult living situation wore my fragile nerves out. I am now totally burnt out and reduced to the basics of bare survival.
Except for my elderly father, who is himself worn out from the stress of dealing with my mounting difficulties, I have no support. When my father is busy or out of town, I have no one at all. Knowing that I will be left in the cold when my father passes on, I hope to die before he does. Getting services here in Montreal is impossible. As a semi-autonomous adult with an invisible disability, I fall through the cracks. We have a CLSC (government run health and social services) network, but they treat my case as if it were a joke. Short of money and run by a tough government, they refuse to help me. Private agencies won’t even look at me because they think CLSC is there to help everyone no matter what his needs are. I feel that decades of mainstream living without support hastened my burnout.
Although the media is paying more attention to autism spectrum disorders, focusing on only the success stories does more severely affected people like me a disservice. Sure, many high functioning adults on the spectrum succeed and do well, but for every scholar who earns two degrees and every autistic adult who gets married and has kids there are countless others like me who are fumbling through responsibilities, burning out and falling into dysfunctional lives.
Marla Comm
Montreal, Canada
Ruth
Sep 11, 2007 at 3:29 pm
I work with adults with learning disability and just from personal experience can tell you that there are a LOT of undiagnosed autistic adults around - not just relatively high functioning folk, but people merely described as having learning disability and their autistic behaviours put down to personality, mental illness or poor parenting - but who in fact have what I call (probably tactlessly) “tick the box” autism - i.e. to anyone who knows anything about ASD, really obvious autistic features.
I do not believe there is an ‘epidemic’. I just think many people were lumped in with the LD folk and no-one troubled to look further. The higher functioning ones stumbled along as Marla says, or found their niche somehow, or ended up in psychiatric care due to the stress.
In the UK there were whole wards of people in long stay hospitals (mostly now closed), many of whose behaviour fitted autistic symptoms as far as I can tell - because they were often the ones recommended for institutionalisation by professionals giving their ‘expert’ opinion to desperate, unsupported families
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