Should Asperger Syndrome Be Considered an Autism Spectrum Disorder?

There is overwhelming research from around the world that there is no significant difference between Asperger Syndrome (AS) and higher functioning autistic disorder. Scientific studies, research and expert professionals who have diagnosed and treated large numbers of individuals across the spectrum and lifespan should be the guiding forces that dictates the basis for this change in the DSM V – not emotion, not “I don’t want to lose my Aspie identity.” and certainly not because groups of people with differing agendas want to make sure their agenda is served in the DSM V.

At least one type of essential autism and Asperger’s seem to be inextricably genetically linked, given the very strong familial associations. Any pathology related to the timing of when certain genes are expressed (”turned on”) or “turned off” is very likely to engender a range of effects from mild to severe, depending on the timing of the expression.
I am endowed with Asperger’s, but I am VERY aware that there but for the grace of God… In fact within my extended family are a couple of examples where the autism is too profound to permit proper integration with society.
I do not want to be called “autistic” even though I share the same genes. Let’s face the politically incorrect truth, that “autistic” has to a certain extent become synonymous with “retarded”, thanks to parents with “retarded” brain damaged children labeling them “autistic”, and the disastrous effects of the “Rain Man” movie which labeled the behavior of an individual with a massive physical brain defect (congenital defect of the Corpus Callosum or “split brain”) as somehow representing autism.
I’ll be honest and admit I like that Asperger’s has at least a little cachet that I might be smart at something, even if I am a social disaster. Long before I knew I had Asperger’s, long before I had ever heard of Asperger’s, I had taken pride in my knowledge and abilities, even though I knew I was a social disaster with no friends. (how could I not notice? I have never had a friend of mine come to my door in my entire adult life. I have lived in the same house for over thirty years, yet I would not recognize my neighbors.)
It would be disingenuous of me to try to separate myself from autism when I know that genetically that is where I come from, yet I’ll take the Asperger’s label and accept it because it says who I am fairly accurately. What else could I call my essential neuropathy, “autism light”? I already have to hide that I have an Asperger’s diagnosis from my co-workers; how much worse would it be if it got out that I have autism?

We first all would have to be on the same page. A diagnosis of ‘high functioning’ autistic disorder doesn’t exist today. There is no ‘high functioning’ in the DSM currently and I have never seen the term ever within the DSM for any. ‘High functioning’ is a descriptive term only, not a diagnosis and even that is used with confusion. The confusion itself is how people use terms as diagnosis.

Reclassified as simply “autism spectrum” really would only confuse things more, since everyone uses the term autism spectrum to include all 5 within it. I think the real answer is retraining those who diagnose and the school as to how they use the DSM, and leave the DSM the way it is other than my previous opinion on PDD-NOS. If they reclassify, then maybe they should not have a spectrum at all. Let autism be of its own, Retts of it’s own and so on.

Although my son had Asperger’s, he clearly had the same core deficits as other children with more profound autism. Yet the identification that he had Asperger’s was very helpful in noting that he had some language skills, wanted friends, and had some cognitive abilities and interests that would allow him to be mainstreamed–even if he was challenged in all of these areas in a way common to children with autism. Why does there have to be a division? I remember when the doctor debated between PDD-NOS and Asperger’s because our son’s obsessive interest was Thomas the Tank Engine. The thought of facing that vast, vague literature was overwhelming. The literature for parents on Asperger’s is more concrete.

I have a hard time getting too worked up about the proposed change, because I don’t think it will last very long. I feel that within a few years of the new DSM there will be more and more breakthroughs that identify specific subgroups of autism based on the genetic or biochemical mechanism behind it.

Norway Mom – from your lips to God’s ear!!

Lisa

My wife and I knew little about autism until our youngest was diagnosed. As we read, it bothered my wife to see “autistic” traits in my behavior. Naturally, our reading on autism led to information on Asperger’s, and I discovered from one of the articles here that I was a hard-core aspie.

My sister’s younger boy, and his older daughter both have Asperger’s, so this would seem to indicate the genetic basis for the condition. My own quasi-scientific theory is that some of us carry the genetic predisposition for autism – often manifested as Asperger’s – and something (such as perhaps the mercury in vaccinations) triggers it into full-blown autism.

I posted my own response to the article before reading the others’.

It really matters not why the medical community considers us with Asperger’s. We are not “handicapped enough” that recognition would make any difference as far as any considerations for treatment or goddies from the government – not that someof us would seek them anyway – are concerned.

For myself, discovering that I had Asperger’s made a lot of things in my life very clear. Like you, Bill, I had few friends, but have always been a bit of a loner anyway. It did however explain why virtually every relationship I’ve ever had has been a train wreck.

If the scientific community does or does not consider me a high-functioning autistic is of little concern to me.

I’m not paying much attention to them anyway.

To me, “Asperger’s” implies an autism so mild that no services need be provided. It seems that one of the criteria for diagnosing autistic disorder is an unwritten one: that the patient have cognitive impairment. In practice, Asperger’s is used as a label for autistics with high intelligence and also as a label for children whose parents don’t want the stigma of autism. Temple Grandin, for example, has been said to have “Asperger’s”, when she is really just plain autistic.

Sandy

A diagnosis of HFA, higher functioning autism, does not exist today but it is used in studies published in reputable journals. Dr. Laurent Mottron has published dozens of studies referencing Higher Functioning Autism.

This blog commentary focuses on Aspergers as did the New York Times and the Globe and Mail in discussing proposed changes to the DSM. Few, including this blog, comment on the how the DSM should be reorganized to reflect the realities of those more severely affected by autism whether from cognitive deficit or otherwise.

Harold~ that’s the problem. People should have a bunch of different terms for one diagnosis. Generally HF describes if the child is verbal or not but also leaves out abilities of cognitive deficit or otherwise the child or person may have.

Harold and Sandy – I’m not at all sure there IS a “usual.” I’ve heard the term HF used for kids who have minimal language but have ANY speech at all… I’ve heard AS used for kids who have echolalic speech and major functional problems…

Harold – I wrote about AS and PDD because they’re specifically being targets as diagnoses.

IMHO, we should have a wide variety of diagnostic terms available, so that we can properly describe the actual syndrome for each individual.

To just say “autism” when describing EVERYONE with significant social/communications delays is like saying “headache” whether it’s a migraine, an injury, or a sinus infection. Yes, your head hurts: but that’s where the similarity ends!

If a child has “autistic like symptoms” because of aphasia… or a mitochondrial disorder… or a food intolerance (all of which, IMHO, is perfectly possible), then ABA is completely unnecessary. But speech, medical or dietary treatment could change the child’s life.

Lisa

Which is my point. The diagnosis varies from one end to another by doctors, schools and parents (example LF and HF) and that’s what needs to change, not the diagnosis itself. LF and HF is already sort of there, autism being the loweer end and asperger’s being the higher end. When a child with autism progresses, that’s not HF; it’s progress.
Those who have or a mitochondrial disorder or a food intolerance which is causing autism-like symptom’s, those shouldn’t be part of the PDD diagnosis at all but the thing is, very few doctors consider or test for those things. If the symptom’s are there, it must then be a cause of autism. A parent can waste alot of time on ABA if it’s not autism.

Regardless of if the DSM changes or not, people are still going to use the terms and diagnosis just the same as the always did.

I definitely agree that what needs to happen is more identification of the sub types of autism ,rather than less.Think that the problem often has been, as Lisa pointed out that the multiple causes of autism respond to different treatments.And have very different symptoms.
Aspergers is such a different experience from severe autism.

Bill, though 1/3 of all people with an autism diagnosis are also considered mentally retarded, I’ve always found that slightly suspicious,as most non verbal children will score very low on any IQ test that is based partly on verbal skills.And cooperation/willingness to do the test is also required to get a true result.
By the way Bill, my youngest has agenesis of the corpus collosum.And he is nothing like Rainman. Rather like autism, the manifestations/outcomes of this disorder range from college professors to severe disability.
Despite a high IQ he is a very slow learner of math or reading, ( apparently it is common for kids with ACC to need lots of repetition) and despite being very social and outgoing, I’m starting to realize more and more that he often misses subtle social clues; for example who is being kind and who is not.Or who wants to play and who doesn’t. He has not ever been invited to anyones’ birthday party, which breaks his heart.
His speech is also delayed though he understands fine.
I did grow up with boy with aspergers who reminds me a lot of rainman.
Though I lost contact, I have heard he is doing well. He was a sweetheart, and would stand very close to tell you more than you ever wanted to know about the inner workings of AC DC batteries,and transister radios.I learned a little bit about batteries from him, though to be honest, he was never very good at explaining things.
Can also very much understand that someone who is living a fulfilling challenging life may not want to be identified as having autim.Sometimes wonder if there is even need for a diagnosis at all in these cases.Or perhaps a much milder and distinctly different diagnosis would be more appropriate?

Sandy, as I understand it, it actually IS appropriate to diagnose someone as “autistic” if he has autistic symptoms – period. Thus, someone can be “autistic” even if the cause is clearly, say, brain damage.

I believe that the same would be the case for someone who has autistic symptoms as a result of, say, a mitochondrial disorder or tuberous sclerosis.

I’d assume that, in those cases, treatments for autism may be appropriately biomedical AND developmental AND behavioral – since you’re working on a lot of fronts at once.

Re progress v. rediagnosis – tricky question! If my kid was diagnosed with “autism” and is no longer diagnosable with autism, was he cured?

Lisa

Lisa, I don’t believe that to be true, although I do believe it happens all the time. Some one who drowns but is revived would not be autism, they already know the cause of those symptom’s. Same with celiac, which can cause the symptom’s of autism and also cognitive delays. Mercury poisoning also is not autism. Tuberous sclerosis is a rare genetic disorder which can and often does cause mental retardation. Brain tumors in certain area’s can cause autism-like symptom’s, but they know the cause. They are all different diagnosis of a known cause. Autism has no known cause, yet brain damage many times has a known cause. And that happening all before the age of 3 would make no sense, either. Had the child not falling into water, they wouldn’t be left disabled. If (and it does happen) that doctors diagnose autism when there is a known cause, then anyone at any age having the same symptom’s should be deemed autism regardless of onset.

If that is the case, almost every person would have some symptom’s of autism, and the autism rates then are way out of whack. Had my son shown a brain tumor on his MRI, he’d not have a diagnosis of autism, and that was straight from the neuro.

This is what has to change, not the DSM.

I can only say that I’ve checked with several developmental pediatricians on this point, and been told that autism is diagnosed based on symptoms – not on our inability to point out causes or provide cures.

But I will check again.

Lisa

Hi Sandy, think that Lisa is right about this.Per the DSM IV, diagnostic manual, there is no requirement for an unknown cause of origin, and in fact, it states
“the condition is sometimes observed in association with a neurological or other general medical condition (e.g. fragile X syndrome and tuberius sclerosis)”
Re the late onset, PDS NOS is described as including atypical autism
“presentations that do not meet the criteria for autistic disorder because of late age at onset…”
So it seems that per the diagnostic criteria, cause does not matter.
Socially though, I think that often if a parent already has a diagnosis that explains their childs’ behavior ie;
“he acts this way because he became brain damaged from nearly drowning at the age of 4″
they are probably not going to be looking for more diagnoses.And are less likely to go through the necessary tests to get the child diagnosed with autism.After all, what would be the point?
And as Lisa pointed out earlier, knowing the cause is going to make treatments more appropriate and specified.
Identifying causes and which treatments work best for which type of autism; now that would be a helpful area for research.Given the huge number of kids who need help right now, it would be great if scientists could focus on something a little more practical that identifying every possible different variation of genetic coding that could result in the list of symptoms we call autism. It’s a bit like looking for the elusive “headache” gene…

The DSM is mental disorder’s, so of course those types of doctors wont and don’t look at other causes when you’re only looking at the DSM.
Depends on who gives the diagnosis, and no, brain injury is not autism. A tumor is not autism.
Autism has no known cause so if doctors as Lisa suggested are diagnosis on symptom’s only, they coul dbe putting that child at great medical danger if they did have a brain tumor. This also suggests the autism rates being to high is a result over over- mis-diagnosing.

Sandy;
At the moment, the only criteria being used to diagnose autism is a set of symptoms. And I agree that helping identify medical conditions that may cause these symptoms is crucial.

There is no lab test or outside criteria to truly identify “autism”.Just a set of symptoms.At the moment this ” symptom list” is found in the DSM IV TR.

To take the example of having a brain tumor. A brain tumor is not a headache. But one of the causes of the symptom we call “headache” could be brain tumor.(And when treated hopefully the headache should go away..).
Currently, a child who has fragile X syndrome, who had congenital rubella, who had brain inflammation; even if there is a known cause, if they meet the symptoms, then they can get the diagnosis of autism.
Maybe this will change. After all the DSMIV is being rewritten.
Actually a proper DSM IV diagnosis would list medical conditions on Axis III anyway.
I think though one of the biggest problems some parents of children with autism face is that once they get diagnosis, physicians stop looking for medical causes.

Then that’s the problem. Had there been a known cause for those symptom’s, then it isn’t autism and if people are diagnosing just based on symptom’s alone, then there’s many people out there not having autism or even a sub autism. A head ache cause is one thing, but a tumor in the right place in the brain causes autism-like behaviors however, you then know the cause. Autism as of today has no known
cause(s), and that’s the point.
Also, that drowning victim was an example of how other causes and disorder’s may look like autism. A parent can walk in, and if they’re not asked about history, that drowning victim could very well end up with an autism diagnosis. The only interesting thing about tuberous sclerosis (other than it’s genetic) is that a certain percentage would qualify under the autism criteria, however the tumors account for that, leading anyone to wonder why researchers are not looking at that particular part of the brain in those with autism. I’ve asked this question many times, and suggested a poll. How many people only have a diagnosis of a DSM and no other medical tests to rule out of causes? It’s hard to believe noone does rule out other mimicking disorders. Tourettes, OCD, schizophrenia, lead and mercury poisoning, Angelman syndrome
And if this site is going to promote that a brain injury no matter the cause is the same as autism due to what a developmental peds doc suggests, then I am at the wrong site.

Sandy, I think you’re misunderstanding me. And I have spoken to developmental peds who indeed have told me that I am correct in my understanding.

Obviously, oxygen deprivation or fetal alchohol syndrome etc. are observable and diagnosable problems. BUT. Those issues can cause autism, meaning they cause symptoms which, together, make a person diagnosable on the autism spectrum.

In those cases, a child would have autism – caused by brain damage, or oxygen deprivation, or FAS. They would ALSO have brain damage, etc.

My point is that autism is NOT “a collection of symptoms that are not explainable,” but rather “a collection of symptoms.” Sometimes those symptoms are explainable; sometimes they are not. Sometimes they are actually curable; most of the time they are not.

Lisa

Let me get this straight, “In those cases, a child would have autism – caused by brain damage, or oxygen deprivation, or FAS. They would ALSO have brain damage, etc. BUT. Those issues can cause autism”
You are saying although they know the cause of injury and the results/ symptoms of that injury, it caused autism? Or just autism like symptopms? If those things are the causes of autism, then you tell me what difference it would make the age of the person? If a 20 year old had oxygen deprivation or brain injury, autism onset would then be age 20.

Autism is in fact a collection of symptoms that are not explainable, or we wouldn’t be here. If you can explain it by FAS, then it’s FAS. If you can explain it by brain damage or oxygen deprivation, then that’s what it is. Of those mimicking things of autism, you tell me how they’d know there was autism at all? They’re almost exactly the same symptom’s. IF any autism was explainable, then there would be no debate and the ASA wouldn’t state: There is no known single cause for autism.

you’re correct about the age issue (under age 3).

you’re correct that there is no single known cause of autism, though there are multiple known causes. None of the known causes explains all cases of autism, and most cases of autism are not explained.

obviously we KNOW that fragile X and Rett syndrome are caused by certain genetic aberrations. We KNOW that tuberous sclerosis can cause autism. differences in brain structure and chemistry can cause autism.

But bottom line, autism-like symptoms define autism. there is no other way to diagnose autism except to look at symptoms. If a child has a disorder that looks exactly like autism – but the cause is known – so far as I understand it it is appropriate to say “this child is autistic (or has autistic symptoms or autistic-like symptoms) as a result of X.”

Here is what Dr. James Coplan, a developmental pediatrician and author, told me:

“Autism, PDDNOS, and Asperger Syndrome are shorthand terms for collections of symptoms. The diagnosis is made on the basis of behavioral and developmental symptoms, irrespective of cause. Thus, a child may have “idiopathic autism” (idiopathic means “we have no idea why”), or a child may have autism “due to” any one of a number of identifiable causes. Fragile X, trisomy 21, duplication/deletion 15q, prenatal exposure to thalidomide, etc, etc.”

Does this make sense?

Lisa

“though there are multiple known causes.” And what would those multiple causes be?
You might want to rephrase it to a maybe ‘contributing factor’. But to say ’cause’, no just because they have the symptoms of what ever else they have. You obviously know more than anyone else by projecting there are ‘multiple known causes’ which is not an opinion but a statement.

I’m going by what I’ve learned from the pros, as cited above. yes, the Fragile X chromosome causes a form of autism. yes, Retts is genetically caused. Yes, according to Dr. Coplan at least, “trisomy 21, duplication/deletion 15q, prenatal exposure to thalidomide, etc, etc.” all cause autism.

So no, I don’t know more than anyone else! And certainly MOST autism is of unknown cause.

But autism is not defined by being of unknown cause.

Lisa

“It seems that one of the criteria for diagnosing autistic disorder is an unwritten one: that the patient have cognitive impairment.”

That has never been considered a reasonable requirement, even in the time of Kanner (1943). One of the children from that study, Alfred N, had an IQ of 140.

“Sandy, as I understand it, it actually IS appropriate to diagnose someone as “autistic” if he has autistic symptoms – period. Thus, someone can be “autistic” even if the cause is clearly, say, brain damage.”

Lisa is correct here. A child can have multiple labels. For example, it’s not uncommon these days for children with Down Syndrome to also be labeled autistic. In these cases, it’s typically the autism which is most noticeable behaviorally. And it matters because it’s informative about the specific needs of the child. In the past, these children might have gotten a label of “profound/severe mental retardation.” (I actually know a child who has Down Syndrome and is very obviously autistic; very different to most children with Down Syndrome.)

In most modern autism prevalence studies, if I’m not mistaken, they count everyone who fits criteria. They don’t exclude those who also fit criteria for something else.

Joseph~ I’m not talking about a duel or multiple diagnosis and I don’t think Lisa was either. I’m also not talking about the use of MR which was then changed to the use of autism which more than likely it was a misdiagnosis. In what Lisa is saying, Down Syndrome would be the cause of autism. Are you saying DS caused autism? If what she is saying, then a person who experiences brain damage at any age would then qualify for an autism diagnosis. The odd thing is, is that depending on the cause of autism regardless of the age of that person, you’d know what the outcome would be. For instance my nephew with a TBI at age 21 who now resembles autism very much. That injury at age 3 or 21 would have had the same results for the surviver, but only the child at age 3 get’s the autism label. The idea that autism is not defined by being of unknown cause is the first time ever in any blog or site this ridiculous concept towards autism has been stated. No one knows what causes autism.

Autism is not defined as “a set of symptoms of unknown cause.”

And yes, autism – defined as a set of symptoms – can be brought on by known causes.

A child with Fragile X has autism as a result of known genetic causes. They have the genetic abnormality AND they have autism. The autism is brought on as a result of the genetic abnormality.

As I mentioned in prior comments, there are several well-established causes of autism. There are also many causes of “autism like symptoms” which may be treated as autism because the symptoms are identical with the symptoms of autism.

If you really want to say “he behaves precisely like a child with autism because of his TBI” versus “he has autism as a result of his TBI,” I’d say you’re splitting hairs.

Lisa

Fragile X is part of the autism spectrum. Fragile X is fragile X. There is a genetic known cause for Fragile X. It’s not a cause of autism. It is a cause of fragile X. Are you suggesting you can have Fragime X and autism at the same time?
That is bad information. Autism as a result of TBI can only happen, according to you, if that injury happens before the age of 3.
Next you’ll be tellingme mercury poisoning and autism is the same thing.

fragile X and Rett syndrome are both autism spectrum diagnoses with known (genetic) causes. Thus, YES, you can have fragile X and autism at the same time, just as you can have a virus and a sore throat at the same time. Fragile X, a genetic anomaly, is the cause of the autistic symptoms (or the autism).

Right now, NIH is sponsoring research into a wide range of possible causes for autism. In fact, a recent press release says “Rob McConnell, M.D., of the University of Southern California, and colleagues will explore possible links between traffic-related air pollution and ASD risk. They will also examine genes that help process pollutants in the body among children with and without autism to determine how these genes may affect ASD risk.”

There is no general understanding of the cause of autism overall. But in individual cases, it is certainly possible to point to causes.

Can you have autism and aspergers at the same time? Autism and PDD-NOS at the same time? Fragile X and autism duel diagnosis, where did you get that info from?

Sandy, I think we are crossing wires.

By virtue of having an Aspergers diagnosis you have an autism spectrum diagnosis. By virtue of having a Fragile X diagnosis you have an autism spectrum diagnosis. So obviously the two go together by definition.

It is also perfectly possible to have (as someone said) a Downs diagnosis and an autism spectrum diagnosis. And many kids have OCD and ASD; depression and ASD; etc.

It is also possible to have a diagnosis such as FAS and also have an ASD diagnosis.

“Down Syndrome would be the cause of autism. Are you saying DS caused autism? ”

Whenever something is a significant “risk factor” it’s also considered a cause. It’s not necessary that it always causes autism.

Brain damage will also not make someone autistic for sure.

As far as terminology goes, what Sandy is talking about is “idiopathic autism.” That’s autism of unknown cause.

Even in cases where there’s brain damage or something else, you can’t know for sure that’s what resulted in autism, can you?

Another classification scheme is “essential vs. complex autism.”

BTW, I understand it’s possible to have Fragile X and not ASD.

Fragile X and Retts are genetic diagnosis and although it’s within the spectrum, it is not an autism diagnosis. Have you looked at the signs/ symptom’s for either of those?? Fragile X is the largest number one mimicking disorder of autism. The only way anyone would know their child has either and not autism is by doing a genetic test, which is my point of ruling out other disorders that mimic/ look like/ has symptom’s of autism but a different diagnosis that explains those symptom’s. I’m not talking about idiopathic autism. I’m talking about known things that mimic autism but it is clearly something else of another cause. What you’re more or less suggesting is who needs other medical tests to rule out other diagnosis; if you fit the autism criteria, you then have autism no matter what and you still have not offered where you’re getting this information from.

March of 2006, Lisa Rudy has an article What Causes Autism? that states “The bottom line is, no one knows for sure what causes autism. Most experts will say that autism is probably caused by a combination of genetic and environmental factors. Even those experts, though, do not have a definite answer.”

That is mainly my point. Obviously some of this topic Should Asperger Syndrome Be Considered an Autism Spectrum Disorder? is opinion and not stated/ sited facts, which does this site quite a disservice and it’s time to locate another area.

I think we are absolutely splitting hairs here, with no good resolution in sight.

Typically, “autism” and “autism spectrum disorder” are used interchangably – unless for some reason we are making a technical distinction between a classic autism diagnosis versus a PDD diagnosis, etc.

And while we don’t know the cause of all autisms, we certainly know the cause of some diagnoses on the autism spectrum, and can speculate very reasonably on the cause of quite a few individual cases of autism.

I don’t think there’s any doubt that certain people have inherited autism; that others have autistic symtpoms as a result of specific pre-natal or early injuries, and so forth.

Fragile X is an autism spectrum disorder. It is not the same thing as “autistic disorder.” If that’s your point, you’re quite right – but I’m not sure where that gets us.

Lisa

You’re the one who said “Thus, YES, you can have fragile X and autism at the same time” that’s not spliting hairs, that’s out right bad information and that’s where this started from. That is your opinion, not a fact. No, you can not have both at the same time. You’re making this label change even more confusing for people.

I have never been critical of this site up until now. On one hand you have articles you wrote which state one thing, and here you state another. Now I’m beginning to understand the frustration some posters have here.

“Fragile X is an autism spectrum disorder. ”

Not to put too fine a point on it, but I believe you’re mistaken about this, Lisa. Specifically, see:

http://www3.interscience.wiley.com/journal/112611674/abstract

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1683028/

actually, this is the very first time I’ve had an interaction of this sort with anyone on the site. I have to say I’m just confused. It sounds like you want me to say something like “autism is a disorder with no known cause. fragile X is a separate disorder with a known cause.”

What I am trying to say is that autism disorder and fragile x and rett syndrome and asperger syndrome and PDD and CDD are diagnoses that are part of the autism spectrum. the autism spectrum is commonly called “autism,” and people with diagnoses on the autism spectrum are commonly called “autistic.” Thus, people with Aspergers or Fragile X or PDD may be termed “autistic,” even if their official diagnosis is not “autistic disorder.” That may not be technically accurate but it is certainly usual.

with the exception of Retts and Fragile X, ASD’s are diagnosed not on the basis of medical tests, but on the basis of symptoms. autistic symptoms are similar to the symptoms of many disorders, and in fact people may have diagnoses which include autism and other disorders as well.

In some cases, the causes of the disorders on the autism spectrum are known. In some cases they are not known.

I don’t understand why this is complicated, or difficult, or cause for frustration.

Lisa

My mistake: Fragile X is not officially an autism spectrum disorder. Many children with Fragile X do have autism, but not all of them.

In those cases, Fragile X is the cause of the autism spectrum disorder.

I apologize for the confusion.

Lisa

Like I said, Fragile X is most often mistaken for autism. Fragile X rules out autism and if you look at the symptom’s, they are very close to each other. You can not have both at the same time and if one does, that’s some doctors doing by labeling. If you have a brain tumor in a certain place of the brain, it’s known to cause autism- like behaviors however you don’t have autism, you have a brain tumor.

Autism is autism due to not explaining it by something else, like a brain tumor, Fragile X or lead and mercury poisoning. That’s why many perform MRI’s, EGG’s and blood work prior to a diagnosis of autism. On this site, it is stated: “The bottom line is, no one knows for sure what causes autism.”
But today we know causes? Okay then.

“Fragile X rules out autism”

I don’t believe it does. In the DSM IV, for example, the only things that rule out autism are Rett Syndrome and CDD, and even that seems completely arbitrary.

If a genetic syndrome rules out autism, then all it would take for a particular autistic child to lose their autism label is the discovery of a new genetic syndrome.

What one believes and what literature is out there are two different things. Doctors all do things differently as well and many may never look at other conditions that mimic autism; they may just simply label the child. The DSM is mental medical, they’re not always trained to look at genetic causes, are they? If you want to limit yourself to only the DSM, so be it. Disorders that display autism symptom’s (not the cause of autism) since other medical conditions or problems may mimic or add to severity of autistic features, a child neurologist can help evaluate a child for these issues. The other conditions may include genetic disorders that may have some autistic type behaviors, other learning or language issues, underlying brain injury or epilepsy, and sleep issues, include but not limited to: Deafness, Galactosemia, Heller’s Disease, Landau-Kleffner Syndrome, Phenylketonuria, Tourette’s Syndrome, Obsessive-compulsive disorder, Semantic-pragmatic speech disorder, Schizophrenia, Retts, Tuberous Sclerosis, Angelman Syndrome, Klinefelter Syndromes, Fragile X, Hyperlexia. I met a mom whose child did have Fragile X, he displayed all the autism criteria and lost the autism diagnosis because they found the explainable cause for the behaviors. When it comes to Fragile X, it’s be pretty difficult to determine which part of those behaviors were due to that and which were due to autism. If you look at the symptom’s, it’s a mirror image of autism.

The change in the DSM diagnosis wont change a thing. It’s doctors and people who need to change what they ‘think’ and what we ‘know’. Before I stop posting here all together, how many people had their child genetically tested? How many had MRI’s and EEG’s? How many only had their child tested via a DSM?

In order to say that certain conditions “mimic” autism, then autism would have to exist as an identifiable medical condition.

As things stand, autism is simply a construct; a phenotype first noted by Leo Kanner and Hans Asperger, and the definition of the phenotype has evolved over time. There might be some biological correlates of autism, but there’s no reason to think autism exists in nature, anymore than ‘tall’ or ’short’ exist in nature.

Thank you, Joseph! YES.

Autism spectrum disorders are diagnosed using a constructed set of symptoms based on social and developmental norms.

And I have a suspicion that at least some of the rise in HFA/Aspergers is less about actual changes in people and more about changes in expectations, options and norms.

Alrighty then, you’re saying autism is not an identifiable medical condition? Then ADHD must be on those same lines, along with OCD? Bi Polar? Then what our kids have is really an unidentified medical condition? Kind of hard then to say we know causes for ’some’ with autism and also harder then to say your child really does have autism to begin with.

No answer to my question about those who’ve had other tests other than a DSM?? Are we avoiding that question?

Sandy – are you referring to your question about how many kids diagnosed with autism spectrum disorders have had various medical tests? I certainly can’t answer – don’t have a clue. I could run a poll.

As regards the issue of identifying and diagnosing autism, my personal opinion is that we have constructed a sometimes-useful collection of symptoms to which we give a name (autism spectrum disorders, ADHD, etc.).

The symptoms are not absolute: that is, it is possible for different diagnosticians to observe the same child and come up (quite legitimately) with different diagnoses. this is certainly the case if the child is observed at different times, more than once or only once, etc. The differences, too, may be in part a result of the diagnostician’s personal reactions to certain behaviors (eg, a child is acting out: does he have ODD? sensory issues? another diagnosable condition? or is he just overtired? there’s no objective way to make that determination).

It is certainly possible for a highly-trained doctor to diagnose autism on the basis of havioral and developmental symptoms when there are also underlying (and undiscovered) medical issues. I’m sure it happens every day.

In our case, we went to a top developmental ped at a top children’s hospital; the only medical tests she did or suggested involved weighing, measuring, and checking for hearing loss.

Since neither she nor our pediatrician nor another top developmental pediatrician nor a psychiatrist nor a psychologist nor a therapist ever suggested any other type of medical test, we didn’t get any. And since our son has improved dramatically as a result of developmental and traditional therapies (speech, etc.), we’ve never felt the need to check his EEG, do a brain scan, etc. It’s possible that there are anomalies – but since he doesn’t have a seizure disorder, don’t know how helpful that info would be.

I don’t know if this answers any of your concerns, except insofar as you may feel we SHOULD have dug deeper medically?

Lisa

What you did for your child makes no difference to me, really. You missed the point.
If you agree that autism is an unidentified medical condition, and it seems you do, then most of this whole topic is contradicting. I’m not really interested in opinions, but facts since you’re more presentingmany things here as statements. What you’re suggesting is most only have a DSM, and the general peds you talk with wouldn’t advise and other tests to rule out other known causes, meaning you’re allowing people to believe there isn’t other things that mimic autism.

actually, I’m not saying anything in my articles about whether or not docs recommend other tests – it’s simply not addressed in my materials.

I’m also not saying anything about other conditions “mimicking” autism.

Based on everything I’ve read, it is correct to say that certain issues can cause autism, and/or autism-like symptoms.

I believe that the issue we’re debating here is “how, if at all, are autism-like symptoms distinct from autism spectrum disorders.”

I’m saying that the distinction is very, very subtle and in some cases non-existent. As I understand it, however, you’re saying that the distinction is very real and clearly definable.

Am I getting this right?

“Then ADHD must be on those same lines, along with OCD? Bi Polar? Then what our kids have is really an unidentified medical condition? Kind of hard then to say we know causes for ’some’ with autism and also harder then to say your child really does have autism to begin with.”

Absolutely. All are constructs, defined based on cultural needs and ideas.

Consider mental retardation. Does it exist in nature?

Someone is considered to have MR if their IQ is 2 standard deviations below the norm or more. (This can vary based on social policy.) But IQ is simply a test that was invented by Binet in order to determine which children should attend special education. It doesn’t measure anything in nature per se. It just measures something having to do with education, a cultural phenomenon.

You can study the construct ‘MR’ and you can determine that it is a valid and consistent construct. You can even find biological causes for MR, but in the end it’s not something that exists outside of human culture.

Autism then is defined based on cultural needs and ideas? There’s over 100 DSM codes, sounds like a bunch of docs are making a good living off of cultural needs and idea’s.
Many things only exist in humans, that’s what we’re talking about, not nature. If an animal isn’t termed MR, who really cares.

When we group behavioral and/or developmental symptoms together, we are constructing a syndrome or disorder.

“Autism” doesn’t exist as an independent entity to be discovered (like Australia or a virus). We as humans construct it. We also construct personality styles (shy, outgoing, etc.), ethical mores, and a thousand other aspects of our social world. And our definitions do change as our culture and knowledge change.

Disorders like ADHD and autism are defined on the basis that people with those disorders differ from what is understood to be the norm – and tests are developed to determine just how different from the norm an individual is – in terms of language use, social interaction, etc.

Depending upon the quality and profundity of the disorder, individuals with those diagnoses may be severely challenged (unable to interact with the world in a useful way – by any standards) or not. Many people with autism find it very difficult to operate in the general community for a variety of reasons, yet in certain settings or situations have very few significant challenges; others are unable to function at all.

This is why there is a neurodiversity movement, and why people like Ari Neeman are protesting the video “I Am Autism.” Some individuals on the autism spectrum feel that they may be somewhat or very different from the norm, but that they are not, as described in the film, under attack from an entity called “autism.”

Constructs can disappear too. Autism might disappear one day if preferred constructs are invented, although I would imagine that classifications tend to stabilize.

There are probably close to no children who are called ’schizophrenic’ these days, for example. Ever heard of someone who has ‘cretinism’? What about a child who is ‘feebleminded’?

Are you suggesting autism is not a neurological disorder? That it’s just a social norm diagnosis? I hate to break it to you, but there’s more to autism than socializing and behaviors. I think you don’t quite get the neurodiversity movement either.

When you both figure it out, you can write a paper on it.

I am saying that autism is identified and described, not on the basis of specific neurological differences or damage, but on the basis of behaviors. So yes, a lack of social communication skills, combined with stereotypic behaviors and delays in various observable areas do in fact describe autism spectrum disorders.

There is research that suggests that at least in some cases (and possibly in many), differences in brain size, chemistry and functioning are present. But at this point in history, doctors are not able to do an EEG or PET scan and say “ah ha, I see the neurological problems that are the source of this individual’s autism.”

In fact, when you say there is more to autism than social and behavioral issues, to what are you referring?

If you’re referring, for example, to sensory, intestinal or even neurological issues (such as seizures), I’d argue that these are not (at least at this point) the issues that should be considered when making an autism diagnosis – because they are not among the criteria listed in the diagnostic manual.

You’re the one who said autism is a diagnosis of social norm. If autism was just a social disorder, it would be a social norm diagnosis but obviously there’s more than just social and behavior issues with autism. If it was just a social issue, why bother with insurance coverage. Maybe we should just go back words to say autism is an educational issue only and let them deal with it.

“Are you suggesting autism is not a neurological disorder?”

Not anymore than I’m suggesting mental retardation is not a neurological disorder, or “short stature” is not a thyroid disorder.

I’m just saying none of them actually exist in nature. “Short stature” is an arbitrary perception. Its definition will vary from culture to culture. That doesn’t mean short stature isn’t associated with various genes, or that it isn’t important.

When you compare autistics to non-autistics, you’ll consistently find neurological differences and other differences. Autism is also a genetic condition primarily.

I could make up a construct on the spot, though, that probably has that same characteristic, e.g. embedded figures detection disorder: Those who are at least 2 standard deviations below the mean in their performance in the embedded figures test have this disorder I just made up.

It might not be a very useful “disorder” in a social sense, but I bet you it’s entirely consistent.

Hi Sandy, please don’t get upset about this.When Joseph is using the term “social construct”in a technical way, he is talking about anything that we humans define for ourselves.All mental health issues are social constructs, for example.
To put it another way; if you break your leg, everyone can see a broken leg.All doctors looking at the xray see; a broken leg.No “wiggle room”.It either is or it is not.

Social constructs are things where there is “wiggle room” Someone has to make a decision on how to define it.

Thanks, Hera.

Lisa

Hi Sandy, hope you don’t mind another post/example;
if someone has a pimple on their face, you say “look, see a pimple!” But what does “a schizophrenia” look like?
Or even “an autism?”
In both cases,it is by behaviors and symptoms that we identify them.
So someone had to decide which behaviors and symptoms met the criteria for schizophrenia, and which did not.
The same with autism.

To make it more confusing, the National Fragile X site both states that fragile x can be a genetic cause of autism, and then later backtracks a bit on another page, by talking about the kids with fragile X having more social skills than other children who are diagnosed with autism, and says maybe it is different..Gotta love that consistency!

Not so sure about autism being mainly genetic though Joseph. Congenital Rubella, Sodium Valporate,Thalidomide; seem like there are already quite a few identified environmental causes. And I believe that in some twin studies, brain damage at birth increases the risk of autism?
Of course you could say that any illness we get is based partly on our genetic susceptibility; and this is true, though it is not perhaps a particularly useful or helpful way of looking at things?
In some cases though ,for example fragile X , would defintely agree re the genetic causation.

Sorry Lisa, Posted at the same time..You’re welcome.

I understand exactly what Joseoh is saying. A social construct is any phenomenon ‘invented’ or ‘constructed’ by participants in a particular culture or society, existing because people agree to behave as if it exists or follow certain conventional rules. One example of a social construct is social status. Another example of social construction is the use of money. Quite odd for that to be used with autism, and what a great impression it gives to parents however, how odd that with autism that you cant really ’see’ like you can a broken leg which of course couldn’t be ‘invented’, it’s impossible for there to be other things that mimick those symptom’s of autism?? Just because some of you people didn’t have a good doctor to recommend that possibility doesn’t mean it doesn’t exist.

Because autism IS diagnosed via a DSM and the interpretation of that doctor, the child may or may not have autism at all! That is pretty much what a contruct is, the doctor invented it.

If that’s what this site is saying, which would seem that is more opinion than anything, go right ahead. It’s the most ridiculous thing yet I have heard relating to autism.

Sandy –

I believe I understand what you’re saying about disorders “mimicking” autism – and to be sure I’m completely accurate in my understanding, I am setting up an interview with a top autism diagnostician at a major children’s hospital. Among other things, I will ask her flat out whether known injuries such as fetal alcohol syndrome, hypoxia, etc., can actually CAUSE autism, or whether in fact these injuries cause symptoms which are autism-like – but could be said to mimic autism.

Meanwhile, though, re this issue of autism as a social construct: is it your opinion that autism spectrum disorders are actual “things” that exist on their own in the same way as a tree or a virus or a broken leg? If so, I really don’t understand how that could be possible.

Lisa

Actually, Lisa, it goes along with your article from last year that states no one knows the cause(s) for autism. No one really knows as of today why autism exists, do they? The only real link they have found is genes in a portion of people. That kind of blows that psychiatric diagnosis and undermines the social construct theory. Social construct is a theory just the same as refrigerator mother, ultrasounds and TV’s as a cause/ explanation. That theory only pertains to those with Asperger syndrome and “high-functioning autism”.

Those with FAS probably would fit many DSM’s so it wouldn’t be surprising that that child would also have another label aside from FAS. If a parent adopted a child and displayed symptom’s, that parent wouldn’t know if the mother drank while pregnant. Kids with FAS don’t always display the delays, either or all the symptom’s (just like anything else) but we know now if you drink while pregnant, what the outcome for the infant is. It would be hard to separate FAS symptom’s from autism symptom’s. But they would already know the cause. It doesn’t really matter to me who you interview, unless they also provide evidence other than what they state as their opinion or it’s just another ’social construct’ . We’d all fit some where on a DSM.

The autism spectrum HAS to be a social construct. There’s no other way to conceive of it. It is not an entity, an object, or a thing. Similarly, a statement by any expert on how something “should” be diagnosed will be based on a construct: that is, a set of rules constructed by a set of people who wrote them down in a book (in this case the DSM).

That doesn’t mean autism is”only” a social construct – nor does that mean there are no causes for the qualities that make up the social construct. But “autism spectrum” simply doesn’t exist in the universe except as we define it, and we define on the basis of observed behaviors which we evaluate on the basis of a set of social and communicative norms.

When I said we don’t know the “cause of autism,” I was speaking generally. that is: overall, there is no known cause or set of causes which explain autism spectrum disorders – or the huge spike in diagnoses. MOST autism is of unknown cause.

There are, however, causes for some individual cases of autism. I go on to describe those causes in various articles. Genetics is one such cause (that is, inherited autism and spontaneous mutations). But as others have mentioned, there are quite a few other known causes. Even taken together, however, the number of cases of autism from known causes is small compared to the number of cases of autism from UNknown causes.

‘HAS’ to be? That theory only works due to autism being a psychiatric diagnosis with no known cause. With FAS, autism symptom’s would be a manifestation, meaning it shows characteristics enough they could also have a PDD. With all mental health under this theory would be just that, a social construct and not medical, it’s all invented. Imagine that, non verbal is just a social need. I wonder if induced autism on the mice studies is social construct as well.

It depends on where one reads or whose opinion it is about. Congenital Rubella, Sodium Valporate, and Thalidomide, autism would might be a manifestation however that would be like saying a high fever causes autism after you have a seizure. That would mean anything can cause autism including a cold with a sneeze. Thalidomide mainly caused physical birth defects, and those on the drug Sodium Valporate, how is anyone to know that manifestation isn’t genetic towards epileptic seizures? There has not been a study to prove a causal link. How can anyone say they know any of the causes when you’re saying autism is a social construct??

So, I’ll ask again, do you see autism spectrum disorders as an objective thing like a tree or a virus?

The point is not “autism spectrum disorders don’t exist because they are a social construct.”

The point is “autism spectrum disorders are a set of symptoms which have been classified as related to one another and given a name.” And because there is no medical test for autism, the symptoms are somewhat fungible – which is why some docs will say “autism” while others might say “non-verbal learning disorder” and yet others might say “Asperger syndrome.”

The process of classification in itself is a human construct. In order to make sense of the world, we create categories into which we organize things, experiences, perceptions, etc. The categories vary from culture to culture to some degree. This is how humans make sense of the world.

And which is why those symptom’s can be caused by other known disorder’s that mimick autism symptoms, but if they do no other tests, you wouldn’t know if your kid had Fragile X. I know my son doesn’t.

Autism has to be something or you wouldn’t be eligible for an IEP. If it is not an objective thing, then you’re saying the whole mental health system is bogus.

Just because something is constructed doesn’t mean it’s “bogus.”

All religious faiths are constructed. Literature is constructed. Art is constructed. Our systems for classifying animal and plant life are constructed.

There’s no other way for us to interact with the universe except to construct our own categories for managing information and observations.

Hi Sandy;
“social construct” is an annoying technical psych term for anything we humans define.The “cheat sheet’ version is “if you can’t hold it in your hands its’ a social construct”
And you are completely right; basically mental health diagnoses are “social constructs”
You can’t hold ‘depression” in your hands,(though it is real and you can treat it and take medicine for it) but how we define it is that a whole lot of doctors got together , decided what normal looked like,and then decided what depression looked like in comparison.And produced a symptom list, and tests.

Mental retardation is defined by someone being two ( I think) standard deviations below the norm on intelligence tests.This means that a couple of IQ points either way gets you a different diagnosis.
Its real ( ask anyone having trouble learning) but someone costructed the test , and then decided how much below normal the results needed to be before a person could get a diagnosis.You can’t hold mental intelligence in your hand,so it is again defined by a social construct.
I may be wrong but it sound like you think that”social construct”means that “autism” is an invented problem that does not really exist. A “social construct’ does not mean this at all.
It really just means that the behaviors are defined by doctors as to what is normal and what is autism.
Just like with depression or schizophrenia or anything else that you can’t basically hold in your hand.

Social construct is any phenomenon ‘invented’ or ‘constructed’ by participants in a particular culture or society, existing because people agree to behave as if it exists or follow certain conventional rules. One example of a social construct is social status. Another example of social construction is the use of money.

An example: ADHD is a developmental, neuro behavioral disorder, widely recognized by the medical and scientific community as causing impairment, especially in children. The social construct theory of ADHD rejects the dominant medical opinion that ADHD has a physiological basis and genetic components. Instead, the social construct theory proposes that the behavior observed in individuals with ADHD can be ascribed to environmental causes, specially conventional schools of the educational system, or the personality of the person. Supporters of the social construct theory maintain that ADHD was “invented and not discovered.”

It is not a technical psych term. It is a theory held by some people who are rejecting a psych diagnosis. The term itself social construct can be used for things like religion, but when you term it towards medical issues, you’re then twisting it and denying ADHD exists other than the cause of let’s say the educational system. It is correct, some one had to invent the word autism to term what kids were experiencing. So what. If this site is supporting and supports social construct of autism, that’s your right but don’t try and convince me and I will no longer have any part of it. You think the DSM’s are confusing and how doctors and people use them?

Sandy – if you choose to leave, we’ll miss you! But I want to make it crystal clear that you are misunderstanding what’s being said here.

No one is denying that autism spectrum disorders are real.

What we are saying is that in order to define autism spectrum disorders we must come up with a definition. If we don’t define it, how do we know what we’re looking for?

When we define it, we are in essence constructing it – because there is no such thing as “autism” out there to be seen, felt, or heard. And there’s no objective medical test to determine its existence.

When we diagnose kids, we are comparing kids to a social and developmental norm, and determining how far they vary from that norm. Then we are putting a name to the extent and type of variation.

There may be concrete, known causes for the variations. Or there may be no known causes. In some cases we already know the causes, and in some cases we will never know.

Autism exists: but it is not a “thing.”

Lisa

I personally have lost all respect for this site. I have OCD, depression, OCPD and GAD. I also have a son that has autism and a daughter who has GAD and LD. I am so applaud as to what is being said and will no longer use this site to reference other parents or educators to. unbelievable!!!!

Firstly, sorry if any comments of mine have given offense.
And please be aware that Lisa has been kind enough to post comments of mine even when she totally disagreed with what I’ve said.
Secondly,I completely believe (as previously stated) that autism is a real condition. And believe that it has increased, and that environmental factors are predominantly to blame, coupled with genetic susceptibility.

I was using the term”construct” purely in the way it is often used in psychology .Many things in psychology are referred to as “constructs”.
To check on it,I looked up an old copy of “Psychological Testing and Measurement” by Ronald J Cohen and Mark E Swerdlik, a standard psychology text book.
Construct is defined as “an informed scientific idea developed or generated to describe or explain behavior;some examples of constructs include “intelligence”,”personality” “anxiety” and “job satisfaction”.
So if we are defining the word differently, of course we will disagree as to whether or not it applies.
It seems that Sandy is defining construct as meaning “a problem that is social only and doesn’t exist”
Of course autism exists.Am still kind of surprised that she thinks we were trying to say it doesn’t.

By the way,am more than happy to drop the word “social” if it helps any…

I’m sorry, folks, but am completely confused as to what could possibly be giving offense here. No one’s saying that any of these disorders (OCD, etc.) don’t exist – nor that they have no cause – nor that they can’t be treated.

But you can’t make sense of a thing until you decide what it is.

Human beings have to make those decisions.

By making those decisions, they define the thing – whether, as Hera says, that “thing” is intelligence, or humor, or a syndrome.

That’s just a matter of fact – I don’t understand what could possibly be controversial about it.

I gave an example of what Sandy seems to be defining with the ADHD. It is a theory used and held by some people who are rejecting a psych diagnosis. That is how it’s used in context to ADHD and autism and a few others as well. That is the reality of what it means in that context. The whole thing started with “In order to say that certain conditions “mimic” autism, then autism would have to exist as an identifiable medical condition” meaning autism is not a identifiable medical condition, and then went on about constructs. I am not the one who said that nor suggested constructs and related that to the neuro diversity community…. which is where that construct theory generates from, nor am I the one who said autism isn’t indentifiable. You’re the ones saying all that and I greatly disagree with it and disappointed this site promotes it.
Now kindly stop trying to guess what I mean.

Amazingly, after several years steeped in the autism culture, I seem to have missed the fact that, to many people, the term “social construct” means something more than “a concept constructed by people.”

So far as I’m concerned, that’s all the term means. And all I have been trying to say is that “Autism spectrum” is a concept constructed by people.

People selected the set of symptoms to be included under that umbrella; people constructed the tests to be administered which determine whether or not a person is autistic; people decided at which point any individual would fit those criteria. AND – there is no objective medical test which can determine whether or not a person will fit those criteria.

If we are in disagreement on that point, I guess we’ll just need to agree to disagree.

When you say “X is a social construct” this is often taken to mean “I’m criticizing the very existence of the concept of X.”

Well, people do use “X is a social construct” that way, and that might be part of the problem. But that’s not what social construct means.

Government is an example of a social construct. Money is another. These are fairly obvious examples. They exist merely because there’s a general agreement among humans that they exist.

Yet, a government can execute people. If you don’t have money, you might not eat.

Social constructionism is not just an intellectual exercise with little value. It allows you to think about social phenomena in a different way.

For example, when people wonder how the DSM V definition of autism should change, they generally don’t know why or how this should change. The might think, “well, only people with real autism should be labeled autistic.” That’s fine, except there’s no such thing and there never was.

If you were trying to change the government construct or the money construct, how would you decide a change is a good change? I think a chance is a good change if it’s socially useful – if it helps people in better ways.

In this sense, the DSM V definition of autism should change only if the change will help autistic people in particular, and perhaps other people not considered autistic right now. The “severity” categories of DSM V autism should also be defined in a way that is helpful to people on the spectrum.

For example, if saying that someone has “severe autism” is not informative about specific services for that category, what would be the purpose of the label? Simply to stigmatize?

Wow, Joseph. You’ve absolutely hit the nail on the head so far as I’m concerned re “social construction.”

Re changes to the DSM, though, I think we have to step back a little to look at the question “what is the purpose of the DSM?”

I’m not convinced its purpose is to improve the situations of those individuals whom it helps to diagnose, but rather – more simply – to provide a useful diagnosis. In this case, IMHO, the usefulness applies not so much to the diagnosed person as to the diagnoser.

That is, it may not be especially useful to the diagnoser to have a choice between “PDD-NOS,” “high functioning autism” and “Asperger Syndrome,” since the lines between the diagnoses are pretty hard to pin down. On the other hand, the Aspergers diagnosis is very useful indeed to a whole community of people who have come to identify themselves as “aspies.”

As regards services, since they vary radically depending upon location and situation, I’m not sure it makes sense to marry diagnoses to availability of services. In a sense, that’s like saying “I won’t diagnose your diabetes unless you have medical insurance that will cover your medications.”

Personally, I’d like to see a REAL spectrum nailed down on the basis of observable symptoms. And I’d like to see each set of symptoms given its own name, so that it can be researched discretely.

For example, one autism spectrum diagnosis might be “non-verbal with self-abusive/aggressive behaviors and physical symptoms including GI symptoms, immune system issues and sensory dysfunction” while another might include symptoms like “echolalic speech with compulsivity and anxiety.” (just some ideas – don’t really know what the most useful constellations of symptoms would be.)

Until we’re able to nail down the different combinations of symptoms that are most likely to appear together, we won’t be able to parse out the causes, treatments and/or cures for what we’re now terming generically autism spectrum disorders.

Lisa

There are already constructs for those sorts of things. There’s self-injury, which is probably not formalized like a DSM-IV diagnosis might be, but it’s a known phenomenon and you’ll find papers that study it.

Perhaps if there were a more formally defined construct for it, that would encourage more research. That’s another reason for constructs. Observational sciences need phenomena to be named.

Of course, any new constructs would need to be useful and valid. Here we get into construct validity.

http://en.wikipedia.org/wiki/Construct_validity

Right… I completely agree.

It just seems to me that so much research on “autism” compares apples to oranges. The subjects are selected from among “children with autism ages 8-12″ – which could mean children with a huge range of symptoms.

To find out which treatments are most effective for whom, it seems to me you’d need a really terrific tool for selecting the right subjects. For example, we might find that ABA is only really useful when the student has a certain IQ… or doesn’t have GI symptoms… or did/didn’t regress.

But any type of classification requires agreement on the qualities of each category. And it’s there, I suppose, that the real controversies lie! Some scientists, for example, would say “there IS no regressive autism,” or “there is no relationship between GI symptoms and autism” while others would disagree.

Lisa

Lisa, definitely agree with you.At the moment, autism as a catch phrase covers so many different manifestations.

If there was a focus on different sets of symptoms, as you suggest,and the ability to identify what works best with each type of autism, now that would be useful.

For example,if someone wants to study whether a GF diet helps, the likelihood is that it probably helps kids with autism with GI problems. It may not ( for example) help kids with autism with fragile X syndrome at all.But if you add all these children together as “children with autism” there may well be enough “statistical white noise” that correlations and helpful information gets lost.

And I admit it annoys me a little when a person who is perhaps eligible for a borderline diagnosis of aspergers,and who has no real functional issues at all, ( married, great job, wonderful concentration, smart, perhaps a little geeky)
talks about how wonderful autism is, while completely ignoring the fact that others on the autism spectrum may be non verbal and self injuring.Of course , from their point of view,its true that their experiences are great.

And that those who are non verbal and self injuring are likely having a much harder time..
At the moment it is a bit like we are lumping people who are functionally blind in with people who occasionally wear reading glasses, and have scientists make comments like
“Blind people have no problems with bumping into walls: I tested 50 kids who wear reading glasses and they all walked around the wall.Obviously, the parents of children who are blind and say they sometimes walk into objects are completely wrong”
A bit more differentation, or even identifying new syndromes might be very useful.

Why are things not just labeled as they are? Fragile X, is fragile x, which possibly mimicks symptoms of autism, Tuberous Sclerosis is just that, also mimicks symptoms of autism, many things mimick symptoms of autism. No wonder there is is no known cure or particular cause if everything is lumped all together. With all of these underlying issues, how do you really sort out who truly has autism, from those who have medical conditions that mimick symptoms of autism. People say, I changed my childs diet, and gave them supplements and whala they are recovered, that would then tell me they had more of a food allergy or intolerance, and lacked certain things in their systems whatever they might be. At this rate, how do we even begin to believe that autism in and of itself even exists, are the rates really rising or is it easier just to say (autism) based on symptoms alone. The minute someone receives a label of autism, more testing should be mandatory to see if there is an underlying cause. Such as, tuberous Sclerosis, mitochondrial disorders, Fragile X, food intolerances or allergies, and take those diagnoses for what they are, sure they can mimick autism symptoms, but that doesn’t mean that is what it is. Put everything into it’s right category, and if the person doesn’t fit into any of those, well then Houston You Have A Problem!

This comment stream is a really good example of why the “spectrum” label and diagnosis needs to be tossed. The real problem isn’t even so much the label, it’s the fact that the dimwit APA members who revise the DSM have no clue, nor do they care, of the s***storm they create with their cold, clinical, arbitrary labeling.

Autism is a developmental disorder, NOT a psychiatric one, so strictly speaking, it isn’t even within the APA’s purview. Do you find Down Syndrome in the DSM? Cerebral palsy? Epilepsy and other seizure disorders? No, no, and no.

Kanner’s diagnostic criteria were simple and straightforward. Classic autism, like it or not, is a distinct disorder. Psychiatrists are trained to view everything in a myopic way, just as most specialists are.

I’m tired and a half of all the bickering and pontificating on the whole spectrum issue and it just keeps getting worse, all the while creating a goldmine for quackery and “research”.

Meanwhile, my adult daughter with classic autism has an uncertain future and is virtually ignored in the cooked data and junk science being tossed around so lightly.

I have not gotten an official diagnosis for my son yet, but preliminary indications is that he is on the “spectrum”. The OT and the child psychologist refer to him as “high-functioning” but not an “Aspie”. However, he has far less ASD traits than most Aspie’s that I have seen, he had a language/speech delay until therapy started, his cognitive skills are above normal, and his behaviour “issues” are very, very mild. My question is if a high-functioning ASD “diagnosis” is given, but he is not an Aspergers – Why isn’t there another classification/category that more accurately reflects his condition? I think the ASD dianosis is too limited. Obviously he is on the spectrum, but I have seen several other children like him – who are not Aspergers – and have a PDD-NOS classification. If you didn’t look closely and watch very hard, my son would just be considered difficult and energetic.

Samantha – just wait till the DSM V, when, apparently, they will get rid of ALL distinctions among diagnoses! Should be incredibly difficult to describe anyone at that point, except with detailed descriptions of every aspect of their abilities and behaviors!

Lisa