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If It Looks Like Autism and It Acts Like Autism...

By February 27, 2009

Three guys walk into their houses and complain to their wives "I've got a headache!" Like all good partners, their wives reply "Then take an aspirin (or tylenol or advil)!" All three men take their wives' excellent advice. Half an hour later, all three headaches are gone. Over the next three days, each man has an occasional headache, which he treats effectively with aspirin. At the end of the three days, all three men are just fine.

By digging deeper, you might find that guy A was stressed out; guy B was suffering from a sinus cold; and guy C had whacked his head against a door. All three shared only the symptom - and not the cause. But all three had something describable, recognizable and treatable as "headache."

Right now, in the world of autism, we are living with a similar situation. People with autism spectrum disorder diagnoses of PDD-NOS, Asperger syndrome or autistic disorder (and even, arguably, non-verbal learning disorder and several other disorders) share symptoms. For all we know, there are a hundred different causes of "autism-like symptoms," just as there are a hundred different causes of "headache-like symptoms." Some may be the result of immune deficiencies. Others may be caused by food intolerances, brain injuries, unique brain structures, genetic anomalies or airborne toxins.

But according to the diagnostic manual, unless the symptoms can be better explained by Retts disorder, Childhood Disintegrative Disorder or Schizophrenia - people with autism-like symptoms have an Autism Spectrum Disorder.

In the past few months, the Vaccine Court has made a number of decisions regarding the claims of parents claiming that vaccines injured their children who now have the symptoms of autism spectrum disorders.

From what I've read so far, it seems to me that the court is actually attempting to distinguish, in its decisions, between "autism spectrum disorders" and "autism-like symptoms." The distinction is based on what the court determines to be the underlying cause of the symptoms. Hannah Poling, for example, had an underlying mitochondrial condition and received too many vaccines in one day. The court acknowledged a causal connection between the vaccines and "autism-like symptoms," but did not call Hannah's condition an "autism spectrum disorder."

But if there really is no distinction in the diagnostic criteria between, say, "autism-like symptoms caused by genetic mutation" and "autism-like symptoms caused by a combination of pre-existing mitochondrial disorder and fever brought about by over-exposure to vaccines," I'm not sure that the court can reasonably say that one is "an autism spectrum disorder" while the other is "a set of autism-like symptoms."

In fact, at least at this point in history (and hopefully all this will change over time!) - if it looks like autism and it acts like autism (and it isn't Rett syndrome, CDD or Schizophrenia) - then by golly, so far as I understand the medical and legal literature, it's autism.

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Comments
February 27, 2009 at 10:03 am
(1) Joseph says:

If you’re arguing this is the only reason the court couldn’t say “vaccines cause autism,” you’re missing the point.

There’s some discussion of Hannah Poling’s CARS scores, whether the vaccine injury symptoms were the autism symptoms, and so forth. But let’s leave this aside. Suppose Hannah Poling is unequivocally autistic, and let’s also suppose that all her autism symptoms are attributed to vaccine injury. Would it be honest then for the court to make a broad statement such as “vaccines cause autism” ?

I gave the following example elsewhere. Suppose it is found that once a year a person suffers memory loss as a result of a lightning strike. Would it be honest then to claim that “thunderstorms cause amnesia”?

We all know what anti-vaxers mean when they say “vaccines cause autism.”

February 27, 2009 at 10:16 am
(2) autism says:

I don’t believe that “vaccines cause autism” in the general way that you’re describing.

But I am beginning to get the sense that, by splitting hairs, the Vaccine Court is creating a bit of a monster. As with the CDC and other institutions, it’s setting itself up to LOOK like it’s being deliberately misleading.

IMHO, it would be more helpful to say “yes, in this particular case there was a direct causal link between vaccinations and autism. Now, let’s look at the next particular case.”

Instead, the way it looks to me, they’re deliberately setting up a distinction between “autism” and “autism like symptoms” which doesn’t really exist. And, by setting up that non-existent distinction, they’re creating even more FUD (fear uncertainty and doubt) among the autism community. Which is the LAST thing we need!

Lisa (autism guide)

February 27, 2009 at 10:54 am
(3) passionlessDrone says:

Hi Joseph –

“Would it be honest then for the court to make a broad statement such as “vaccines cause autism” ?”

How about a statement more like “vaccines can sometimes cause autism”? This would seem to be more honest. Are you OK with a statement like this?

In any case, what I find completely disingenious about this this line of argument is that this distinction is only pertinent to some folks if you are arguing about vaccine causation.

By way of example, in my state, Florida, a bill it set to become law that will mandate that insurance companies provide coverage for autism services. Imagine someone trying to argue that this bill shouldn’t cover children who have ‘autism like symptoms’ by the exact same wordsmithing. Does anyone believe that the ND crowd would find this a palatable argument?

Here is another example; take the use of Cohen’s ‘personality tests’ that some folks would offer as evidence that autism rates are actually high in the adult population. In this case, we don’t even need a diagnosis for evidence of people with autism; just the results of people filling out the vaguest of questionairres. It would seem that the important definition of autism depends on the question being asked. It reminds me, in fact, of a shifting goalpost. Ho ho.

- pD

February 27, 2009 at 10:56 am
(4) Sandy says:

Schizophrenia is not part of the PDD category but Retts is. Autism-like symptoms can be caused by many things other than a PDD disorder. If a child has a known brain injury or deprived of oxygen, their behavior can often appear like autism but of course it would not be. A child can solely have Sensory Integration Disorder but not have autism but still have ‘autism symptoms’.
“Autism spectrum disorders” is the same thing as Pervasive Developmental Disorders, so if it looks like or has symptoms like means it could be any of the 5 PDD’s or none of them at all. It does not mean specifically it is Autistic Disorder and not Childhood Disintegrative Disorder. Childhood Disintegrative Disorder and Asperger’s is not the same as Autistic disorder and if they were, then why have criteria for 5 disorder’s? Why not just diagnosis every one with Autistic disorder? “People with autism-like symptoms have an Autism Spectrum Disorder” but only if they fit the criteria for that diagnosis. Autism-like symptom’s can be many people in this world.
The interesting thing is Retts is included into the PDD’s and depending on what site you look at, so is Fragile X, both having a genetic test unlike Autistic Disorder Asperger’s Disorder PDD-NOS
Childhood Disintegrative Disorder which do not at this time.

As for each individual court case, you have to look at them each individually. Since autism has no blood test to confirm autism, claiming ‘evidence’ of harm in in the 2 recent cases which won results in needed to know each case history of that child otherwise how is one to ever make good choices for their child when you see huge ads in USA Today? If you do not look at each case individually, then we can all assume any vaccine will cause autism, but without telling us why. If the child had vaccines with Thimerosal, then the symptom’s they are displaying would be mercury poisoning, which is different and has the same symptom’s as autism. So call it mercury poisoning, not “Vaccines Cause Autism”. 3 vaccines or 9 would make a difference and so would pre existing medical issues as well as mercury over-load. The fact is 9 vaccines in one day can cause mercury poisoning, not autism. Extremely high fevers can cause brain damage, which would not be autism.

Because there is no defining blood test for autism, “autism” and “autism like symptoms” are very real. These courts also aren’t there to determine ‘vaccines cause autism’ anyway and for people to get that message out of it or expect that message without scientific evidence is truly the scariest of all. This of course will never happen until there is a true blood test for autism. The FUD factor comes from not offering the full knowledge of each case, lumping them together and claiming these court cases do in fact determine vaccines cause autism. Both the Poling and Bailey case had a pre-existing condition. A court isn’t there to say “vaccines caused autism”, that is why I am guessing the judges chose their words wisely. Medical science will be the one to discover and say what causes autism. The reason why these 2 court cases won of course has little to do with autism, but the pre existing prior to those autism symptoms, which the 3 cases which lost did not have.

February 27, 2009 at 11:08 am
(5) Sandy says:

That will be an interesting question pertaining to autism insurance bills and also not related to this topic. As it is, private insurances often would provide services as long as an autism diagnosis wasn’t on the paper work. Therapists for years have been working around it in every state. Mainly the insurance bills take care of this issue since prior many would cover it due to ‘symptoms’, but wouldn’t if there was an actual diagnosis of autism.

The fact is, the insurance bill mainly covers O.T, speech and ABA (with a cap). Other than ABA, if a child needed O.T and Speech the insurance bill takes away the denial/ aurgument via insurance companies that ‘autism’ is an educational disorder.

February 27, 2009 at 11:09 am
(6) autism says:

Sandy – The “better explained by schizophrenia,” etc. comes directly from the DSM IV criteria for autism spectrum disorders.

In fact, as I understand it – and someone please correct me if I’m wrong – a person who is brain injured and displays “autism like symptoms” really IS diagnosable on the autism spectrum. They ARE autistic. They are autistic AND they are brain injured. The brain injury caused the autism spectrum disorder.

At this point, it obviously does become confusing.

If a child with autism-like symptoms is taken off gluten and casein, and suddenly loses the autism-like symptoms, was he every “really” autistic? From what I understand, the answer is YES, he WAS autistic, and the autism was CAUSED by an intolerance to certain foods.

Obviously, this makes the whole “what is autism” conversation pretty tricky.

But so far as I can tell from the medical literature, except in the case of Retts or Schizophrenia, it’s not correct to say “this person is NOT autistic, because the cause of his symptoms is known.”

In the long run, it’d be great to be able to diagnose someone with “genetic autism,” “brain injury autism,” “immune-related autism,” and so forth. But right now, those distinctions and diagnoses just don’t exist. Thus, if it looks like autism and acts like autism…

Lisa (autism guide)

February 27, 2009 at 11:51 am
(7) Sandy says:

Say a person/ child was quite typical, then the person drowns but lives, or has a head injury, they are not autism. The head injury person and oxygen deprived person very much may appear like autism and also have sensory issues there after. One had TBI and the other has injury due to lack of oxygen but neither really have autism nor would they ever get that diagnosis since the point of injury and the known result is clear. If a person was diagnosed with autism and other things were never rules out, the child may not have autism. Some one with TBI or oxygen deprived may never progress past the point where they are at, yet some one with autism can.

If a person has food allergies, go on a diet change, that’s often called Celiac or plain allergies in which the brain was starved of nutrients. Is not autism.

If the above was termed autism, you have just explained the growing high rates of autism as a misdiagnosis.

Try looking up DSM-IV Criteria Pervasive Developmental Disorders. There’s a DSM- IV for about every thing including ADHD but we don’t lump ADHD into autism. Schizophrenia also has mimicking disorders. Just as autism, other disorder’s has to be ruled out. Schizophrenia is termed psychosis, autism is not. They are not related to each other.

February 27, 2009 at 12:03 pm
(8) autism says:

Sandy: Because the DSM requires that the symptoms appear before the age of 3, I would agree that an adult with a head injury who develops autism-like symptoms is not autistic.

But at this point we don’t say “autism is a disorder which is incurable,” or “autism is a disorder characterized by a genetic difference,” or “children are only diagnosable with autism if the causes of their symptoms are unknown.”

Rather, we say autism is a disorder which (among other things)involves: “Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.”

We don’t say what necessarily causes these delays, nor is there anything in the DSM that suggests “if it is possible to remediate these delays, then autism was not an appropriate diagnosis.”

Lisa

February 27, 2009 at 12:12 pm
(9) autism says:

BTW – the fact that there are so few “rules” around diagnosis of autism spectrum disorders may WELL explain the rise in diagnoses.

It does seem reasonable (to me, at least) to believe that autism, in some cases, can be remediated through changes in diet – which means it’s reasonable to believe that the “autism-like symptoms” (diagnosed as autism) were caused by some sort of food intolerance.

And the fact that some children respond well to certain treatments while others don’t argues to me that there are very different sets of issues going on.

If my son does well with ABA but has no response to a change in diet, but your son flourishes on a GFCF diet without any other intervention, my guess is that their issues weren’t identical in the first place.

Lisa

February 27, 2009 at 12:20 pm
(10) Sandy says:

It wouldn’t matter if it was an adult or child with a head injury. This would mean any child in a horrible car accident with a head injury would then have autism. Many adults are diagnosed with Asperger’s well into their adult years, per that DSM.

Prior to that DSM, any good doctor would look for known other causes. Yes, other medical issues are suppose to be ruled out. That’s why they often do EEG’s and MRI’s. A brain tumor in a certain area will cause autism-like behaviors. Not investigating other known causes an out right be dangerous to the child if you’re only treating autism when there’s a brain tumor or heavy metal poisoning.

Maybe that’s the problem here, no doctor is ruling out other known issues. I have a long list of what my child was tested for prior to an autism diagnosis per the DSM. Had my son had any of those other known issues, treatment very well would had been different. Had my child had Fragile X, yes, expectations and maybe even treatment would be different. Other genetic disorder’s can also look like autism. Many things can have the same intervention, for instance ABA may very well help those with Retts or Fragile X (doubtful for those with Schizophrenia which onset generally is not during younger years).

A good poll idea is to ask who had and what medical tests done prior to rule out other causes prior to the diagnosis of autism.

February 27, 2009 at 12:56 pm
(11) Bill says:

I really disliked your aspirin analogy, because it implied that regardless of the cause of the headache, their was one common solution. Aspirin doesn’t cure headaches, it masks pain, and that is not a cure!
We know that there are many genetic and pre-natal causes of conditions with autistic behavior symptoms, and therefore there could not possibly be a single silver bullet which could cure all of the different kinds of intrinsic brain structures or brain damage which result in symptoms of autism. It might be possible to find symptomatic improvement for some very specific kinds of autism symptom causes, but since the vast majority (if not all) of conditions which cause autism have to do with the structure of the brain, expecting to find a pill to cure the structure is like expecting medical science to create a pill which can cure hare lip.
By the way, I am always careful to never say “I suffer from Asperger’s.” I have never suffered from Asperger’s; it is rude and insensitive neurotypical people who have made me suffer. I haven’t felt a particular need to be cured of anything.

February 27, 2009 at 1:28 pm
(12) Sandy says:

Since there is no cure at all for autism, or no known cause, it’s simply injustice to say anything that causes autism- like symptoms means it must then be autism.

What’s being presented is sub sets of something, maybe relating to autism causes, maybe not. Lead and mercury poisoning can look an awful like autism, but it is not autism. Remove the heavy metals, walla. Recovered. Too much prolonged heavy metal poisoning can result in little recovery. But maybe it’s really now autism, since the heavy metals caused that end result behavior. Children with Celiac untreated can have the behaviors of autism and cognitive delays, however that is not autism. Schizophrenia and bi polar may look like to each other, may look like autism but they are not autism. Often ADHD can look like autism. Is it then autism?

The whole controversy surrounding autism is what causes it, are there some sub sets relating to other issues. Those who claim recovery from it and of those recovered, did they really have autism at all or something else more easily treatable?

Of course all of these things matter when looking for a cause and a claim against vaccines. Did then the vaccines cause the food allergies? Did it cause only autism like behaviors but not Schizophrenia? Why is ADHD not included into those vaccine cases? Why is it those other disorder’s pretty much never claimed recovery? And we expect a court to have any of these answers or to think they’d understand this any better than any one else? The court looked at the whole picture of the child’s medical history, which had other medical issues going on prior to the end result of the child have autism or PDD-NOS. I would assume and hope their decision was based on that whole picture, not solely on autism which is determined by obvervation and open for marginal error.

February 27, 2009 at 1:37 pm
(13) Nicole says:

This is such a great topic, powerful entities such as courts and insurance companies “attempting to distinguish… between ‘autism spectrum disorders’ and ‘autism-like symptoms’” in order to evade culpability and possibly deny services. Thanks for writing about it.

February 27, 2009 at 1:37 pm
(14) autism says:

Sandy – I did ask a pediatrician (just now) to help me with the “when is it autism” question, but he didn’t have a definitive answer. I’m checking more sources.

Meanwhile, though, I BELIEVE you are mistaken – because by your definition, “autism = incurable developmental disorder,” yet by the DSM definition “autism = a set of symptoms.” By your definition, if it can be cured, it ain’t autism.

I BELIEVE that, indeed, a person with the symptoms of autism is diagnosable on the autism spectrum EVEN IF the cause is known. And I BELIEVE that if a person ceases to have autistic symptoms, they WERE autistic (and now aren’t).

Certainly people are often diagnosed as autistic AND bipolar, autistic AND OCD, even autistic AND ADHD, etc.

But I will dig into this further to be absolutely certain.

Lisa

February 27, 2009 at 1:42 pm
(15) autism says:

Bill – you say: “I really disliked your aspirin analogy, because it implied that regardless of the cause of the headache, their was one common solution. Aspirin doesn’t cure headaches, it masks pain, and that is not a cure!”

I completely agree. The aspirin doesn’t cure the headache, though it does have an impact on the symptoms; such is also the case with ABA, floortime, etc. It doesn’t cure autism – but it can radically improve the symptoms. That’s because there are many different reasons for autism (as with headaches).

It does seem that in some cases autism, like headaches, does have a clearcut, treatable cause. As often as not, though, the reasons are somewhat obscure, and so you treat the symptoms.

There is no silver bullet that will cure all forms of autism, any more than there is a silver bullet that will cure all forms of headache. An aspirin can help in some cases of headache; ABA or GFCF can help in some cases of autism.

Hope that makes sense?

Lisa

February 27, 2009 at 1:49 pm
(16) CodysMOM says:

My son was first diagnosed at the age of 5.5 yrs with Moderate to severe Autism and MR. I had been trying to get doctors to tell me what his problems were since he was 2.5 yrs and they always said he was fine till at 5 yrs old when he still was not speaking or interacting with people . At 9 yrs old his MR dx was dropped compleatly because they figured out his IQ was 107 and because he was now verbal his diagnosis of Autism was changed to PDDNOS W/OCD ,Anxiety disorder, Sensory Intergration disorder and Severe Global Apraxia .The first time he was diagnosed he was diagnosed by a Shrink the second time he was diagnosed he was diagnosed by a Neuroligist my point is some kids get better a bit but Its all still Autism

February 27, 2009 at 2:27 pm
(17) Allison says:

Lisa this is your best piece. I’ve never argued that every case of autism is caused by vaccines nor is every case of autism the same. However I have every autoimmune insult familial condition there is and my children all had major reactions to vaccines. My son was a complete case of regression but it came with illness. Recently a neuro told me that yes, my son’s regression was due to MMR causing swelling of the brain and he probably has mito and an immune disorder. But none of that discounts that he has what is classified as an autism spectrum disorder. The word spectrum already describes that there are differences no need to add “like”, this is done just to further seperate definitive linkings to vaccines. If vaccines cause swelling of the brain which leads to autism than it’s the original cause of injury of the autism. Everything else is word play.

February 27, 2009 at 2:30 pm
(18) Joseph says:

“How about a statement more like “vaccines can sometimes cause autism”? This would seem to be more honest. Are you OK with a statement like this?”

To continue with my analogy, would it be OK to say “thunderstorms sometimes cause amnesia?”

Such statements are understood a certain way by people, and can’t be taken lightly. GR knows very well what it’s doing when it buys an ad that claims the government conceded “vaccines cause autism.” They know how that will be perceived. These are statements of general causation. There’s no such general causation when it comes to autism and vaccines.

If you want to say “someone became autistic once after being vaccinated,” that’s fine. You still have to contend with the specific causation arguments around those individual cases, but that’s fine in principle.

February 27, 2009 at 2:39 pm
(19) Codysmom says:

Alison My son like yours reacted baddly to is shots with fevers up to 105 at times He didnt regress till he was 2 and our Neuro wanted us to file for the vaccine injury fund but the statuted of limitations had ran out I could care less about money of then who takes care of his needs when i am dead I dont beleave that all autism is caused by the same thing other wise doctors would have figured it out by now

February 27, 2009 at 2:49 pm
(20) hera says:

Lisa, thank you very much for this comment.It does seem to clearly summarize the problems with the vaccine court,which does indeed give the appearance of being more interested in developing a “protected diagnosis” category that can never be linked with vaccines , than actually looking at the facts.And like you, I suspect there are many different causes of autism, but there will be a much better chance of actually figuring out what the likely several different causes are, if the attempts to “hide the elephant in the room” stopped.

February 27, 2009 at 3:15 pm
(21) Grace says:

Totally agree! My son (PDD-NOS sx) was exposed to mercury when I had an amalgam filling replaced while I was 5mos. pregnant. The damage to his body was inflicted before he even saw the light of day.

The garbage in the vaccines plus the relative assault on an already injured immune system (as we dutifully stayed up to date on his immunizations) just added insult to injury, so to speak.

The point that I believe most of us so-called “anti-vaxxers” actually agree on is that there is a toxic overload going on from multiple sources in our environment & the vax program refuses to recognize that there is a growing number of kids whose systems are already overloaded or at the tipping point.

It is because of this head-in-the-sand refusal to see that they are rapidly losing the trust of the public.

February 27, 2009 at 3:24 pm
(22) Mary says:

Autism is a category – not really a concrete thing. The DSM, which describes autism as a set of symptoms, is full of other psychiatric and developmental categories that are also defined only by their various sets of observable symptoms. Some of them have symptoms in their set that are the same as or very similar to symptoms of autism. Furthermore, the definitions of the categories in the DSM are continually undergoing revision, which might be considered further proof that autism and many of the other conditions described in the DSM are not concrete things. Research into causes and the development of objective tests may someday turn some forms of autism into concrete diagnoses, but as of right now, the science is not there. We are stuck with a subjectively defined category and nothing more.

I think the Vaccine Court is quite in order to use the terminology “autism-like symptoms” rather than “autism” since the judgments in question are more about vaccines causing brain damage (through swelling). The court has decided that this type of swelling is capable of bringing on a form a brain injury that manifests itself in symptoms similar to those seen in people with autism.

While the assumption seems to be that the wording is a cop out; to me this wording avoids making vaccines culpable for all forms of autism while still making them accountable for ALL cases where vaccines caused swelling damage to the brain. If the Vaccine Court had just used the term “autism,” they may have inadvertently shut the door on those cases where a person’s behavior became “autistic-like” after a vaccine reaction but a specific diagnosis of autism was not achievable (due perhaps to the person’s age being over 3 when the vaccine reaction occurred or perhaps because an insufficient number of symptoms were evident or perhaps because their complete set of symptoms was better described as a condition other than autism itself.

February 27, 2009 at 4:51 pm
(23) autism says:

According to a developmental pediatrician and author in Pennsylvania:

“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.

“Brain injury” (as a result of head trauma) is distinctly uncommon as a cause, but “never say never.”

Interesting!

Lisa (autism guide)

February 27, 2009 at 6:00 pm
(24) AnneB says:

From what I’ve read so far, it seems to me that the court is actually attempting to distinguish, in its decisions, between “autism spectrum disorders” and “autism-like symptoms.”

Lisa, can you cite any such decision? In the Poling case, there was no court decision at all, so it didn’t happen there. In the Banks case, the court didn’t make that distinction, although some of the petitioner’s treating physicians did.

I think the distinction the court is trying to draw is between cases with sufficient proof of a vaccine injury, and cases without sufficient proof. It has nothing to do with whether the petitioner is autistic or not. Your point that diagnosis of an ASD under the DSM-IV doesn’t depend on cause is true, but it doesn’t help the special masters in the Court of Federal Claims. They are not autism diagnosticians. Their job is to determine whether a petitioner’s injury was caused by a vaccine. The cause of the injury is what the inquiry is all about.

February 27, 2009 at 6:52 pm
(25) Sandy says:

Lisa~ why you keep referring to DMS is beyond me. Autism equals a set of debilitating characteristics. Asperger’s contain a few less debilitating characteristics. PDD-NOS is the catch-all when the child presented doesn’t fit any of the 4 PDD’s DSM. The Autism Society and any reputable site states autism is life-long. Do you disagree with this? Are we now on the approach that certain so called theories of subsets can be recovered? A high fever can cause brain damage, and if it does, they then may call that MR, but autism? Are we suggestion any damage to the brain then results in autism according to just a DSM which doesn’t look at cause at all?

In the two cases- one had Acute disseminated encephalomyelitis after the MMR (no Thimerosal), the other has mitochondrial and 9 vaccines in one day. In the Poling case, I have yet to hear about damages awarded, but the courts stated “conceded that childhood vaccines worsened a rare, underlying disorder that ultimately led to autism-like symptoms in Hannah” Of the first case, there is no way to know if the child would of had encephalomyelitis at any other time and it can result after vaccines. The court in either of these cases were careful as to what they said, not because they were paid off- but because other factors were going on other than vaccines and they did not and should not have only gone by criteria of a DSM.

As of today, there is no known cause for autism let alone thalidomide exposure results in actual physical birth defects and MR. The use of that stopped in the 1960′s and today is only used under strict controlled conditions. Of course today it is highly unlikely thalidomide exposure plays any part in this autism or subsets there of. The only identifiable causes would be Fragile X or retts, both pass on from the mother to child. Both leads one to believe one day of a genetic link will be found.

I take it very few, including a pediatrician and author in Pennsylvania, do not rule out other causes prior to the use of DSM? I suppose I may be the only one in the crowd who can honestly say what didn’t cause my child autism according to the medical science.

Other underlining conditions is very important. To ignore them is avoiding the whole picture in order to prove a point.

February 27, 2009 at 7:12 pm
(26) MJ says:

I think the whole point of the discussion is the question of what exactly is autism and what isn’t. Autism is a set of observable behaviors – autism is not a specific cause. Every diagnosis is based on these behaviors, there is no objective test to show that autism is or isn’t there. So when you refer to autism you are implicitly referring to these behaviors.

It is all well and good to say that if there is an underlying condition of some sort them it isn’t “real” autism but something else. But that misses the entire point – every single case of autism has some underlying cause or reason. We just don’t know what the cause or reason is in a large majority of the cases. Something has gone wrong in the normal processes of the body that is causing the behaviors of autism.

If it is a genetic flaw that causes autism does that mean that once the cause is known it is no longer autism? Is part of the definition of autism that the cause is unknown?

I think the problem here is that there has been so much focus lately on the line that autism is strictly genetic then when a case was been “proven” to have been caused by an environmental event that people’s initial reaction is that since it isn’t genetic it isn’t autism but something else. Because everyone “knows” that autism is a life long genetic condition.

I think the problem is also that there is a feeling, as hinted at in a comment by Joseph above, that to acknowledge that this is a legitimate case of an external event causing autism would open the flood gate and give validity to the opinion that vaccines can cause autism. And after you have been fighting a war long enough you stop caring about who started it or what you are fighting for and instead just focus on winning.

February 27, 2009 at 7:23 pm
(27) autism says:

Thank you MJ, YES! That is what I’ve been trying, somewhat inarticulately, to get across. It is NOT the case that autism is by definition of unknown or genetic origin.

Interestingly, the same doc who gave me the info above also made the point that autistic symptoms, while they may fall below the threshold for diagnostic criteria, are highly unlikely to disappear altogether.

I’m fairly certain this is true – even for kids who are “recovered.” I say this mainly based on experience with such kiddos: they may not be officially autistic, but their behaviors defintely have that “autism-like” quality.

Which, by the way, isn’t necessarily a bad thing!

Lisa

February 27, 2009 at 7:24 pm
(28) Elizabeth says:

Wow — such a range of topics. I’m almost overwhelmed. I just wanted to offer hope, of a sort, in the form of autism diet and nutrition. “Nourishing Hope for Autism” is a great resource for parents. It’s an amazing book that covers all autism diets, not just GFCF! It will help parents quickly understand how to apply autism diets and why they are important to children with autism. Julie Matthews (the author) is an autism nutrition specialist and knows her stuff. As a mom to a son with autism, well, I can’t say enough about this.

February 27, 2009 at 7:41 pm
(29) Codysmom says:

Sandy
My son is dxed Pddnos but his IQ is 107 at the age of 11 he had exstreamly high fevers as a child and fiberal seizures run in our family thru my brother So its possible his feveres did do damage BUT WITH A 107 IQ he is NO WHERE NEAR MR he has been diagnosed by Kennedy Krieger Instatute CARD unit

February 27, 2009 at 7:53 pm
(30) Sandy says:

All we’ve heard for years is vaccines cause autism and very little of genetics at all. Any time I tell some one my child has autism, that vaccine question is right there so GR is getting attention and they need to be very careful to what that attention leads to.

Fact still remains that if vaccines do cause anything, WHY does it? If one does not know why, then one does not know if they should avoid them or not and prevention will never ever be in the future. An underlining condition very well may mean those symptoms can easily disappear or not life long or what the treatment plan should be. If we consider vaccines as a cause, what makes the difference as to why the body cant process them but they can a chelating agent or antibiotics or even a common virus? What’s to say while pregnant, the food we ate as mothers was causing gut issues for or fetuses? Maybe they had allergies to foods even then resulting in starving the brain of nutrients? Yes, it still could be autism, but it would then have that known cause and medical explanation.

The reason why some interventions work and some do not for autism isn’t because of autism, but more related to that individual as a person (child) and most probably then their own biology. If changing diet worked so well for all, we’d all be doing it. So is diet change related to autism or just to the biology of that individual and how they process things? What about those who have an autism diagnosis but never had vaccines, or processed their vaccines normally, don’t have heavy metal poisoning? What about all those kids who had many professional doctor administer the DSM and said, nope, not autism. Then you find a professional doctor and after all the no’s, this one says yes it is autism? Were all the others just unprofessional? What about in the 1970′s and 80′s with the ADHD explosion? could all of those kids been misdiagnosed? Did anyone bother looking at that child’s history to see if they at all fit any other DSM than just that of ADHD? The ADHD DSM was probably easier, since pop a pill and hope it got better.

To not acknowledge vaccines as a cause would be foolish but that would not mean it would
give validity that is causes autism. Depending on the theory, it would mean it causes mercury poisoning. If vaccines had lead in them, it would then be lead poisoning. I truly believe vaccines can cause mercury poisoning for some or maybe many kids, but you’d still need to know why that kid and not the other. Even then, we know there’s more going on than just the vaccines when it comes to autism, and not to acknowledge that would be foolish.

February 27, 2009 at 8:06 pm
(31) Sandy says:

Codysmom~ MR is diagnosed based on IQ. It would appear your child has no cognitive processing issues then relating to high fevers.

February 27, 2009 at 8:29 pm
(32) MJ says:

I think GR is still fighting a huge uphill battle to get vaccination recognized as a possible trigger of autism. Vaccinations are a great medical breakthrough and do great good in the world. And health authorities learned the hard way in the wake of Wakefield what happens when the public loses trust in the system.

So there has been a huge push back against the theory that there can be a relationship. If it was acknowledged in the US that there was a relationship between the two the rates of vaccination would instantly plummet and the lawsuits would instantly start. By the time the smoke cleared there would be a return of preventable childhood diseases and most of the vaccine industry would follow the asbestos industry into oblivion.

Nobody wants that.

So perhaps this dance of autism vs autism-like and known vs unknown causes is meant to be a compromise where children whose autism was “caused” by vaccination are getting help while at the same time trying to spare the vaccine program.

If that is the new game then I am not sure that it is a bad thing for the time being.

February 27, 2009 at 10:34 pm
(33) Sandy says:

Anyone see the video of the Bailey case attorney?? Give it a look
http://www.clipsyndicate.com/video/playlist/5895/851149?cpt=8&title=health&wpid=2057

February 27, 2009 at 11:39 pm
(34) Codysmom says:

Codys issues are related more to Pragmatic language function sensory issues Social, and repetative behavior issues and the secondary medical condition is Global Apraxia which i am told by the Neuro is usually only caused by stroke or exposure to neuro toxins Had he not lost speech his diagnosis i am told would have been in part Aspergers but because he lost speech he could nt be give an aspy dx I to think there is more then one cause an example of what i mean I have a friend whos child has a diagnosis of Autistic/MR as well as blind and deaf and his issues are related to a virus called CMV which his mother contracted while pregnant with him . I have friends who say there kids were always different i have friends who say my child was fine till he got his shots I was forced to vaccinate my son told that he would be taken from me for neglect if i didnt allow him to have his first shot at 6 hrs old He stopped speaking with in days of having 11 shots MMR Datp HiB and an IVP he was nearly 2 yrs old

February 27, 2009 at 11:43 pm
(35) Interverbal says:

Lisa,

“But according to the diagnostic manual, unless the symptoms can be better explained by Retts disorder, Childhood Disintegrative Disorder or Schizophrenia – people with autism-like symptoms have an Autism Spectrum Disorder.”

As said by others, there are many conditions for which some of the symptoms of autism may be present. The list is rather large actually. That does not matter. What does matter is that the DSM-IV-TR (or another manual) is being followed with fidelity.

However, I think I get what you are driving at Lisa. That it doesn’t matter whether it is idiopathic autism or a vaccine injury that is indistinguishable from autism. And that we should be careful about trying to create a difference. I strongly agree.

But…. do not miss my point either. We need to be careful about how we talk about symptoms of autism as not being the same as an official diagnosis, unless the criteria are actually fully met. There is enough confusion on childhood diagnostic issues and any clarity is a blessing.

For a case in point review how many times in the comments of this article someone mentions a diagnostic category that is not included in the DSM-IV-TR. Why should parents know that these are research categories and not official diagnoses if no one ever clarifies this?

February 28, 2009 at 12:39 am
(36) Sandy says:

Codysmom~ I am sorry some doctor intimidated and threatened you with child protection reporting of neglect. No one has their kids taken away if a parent chooses not to vaccinate their child and it is a gross injustice of this doctor, but not all doctors would do this. Pregnant moms often don’t think about vaccines or what choices may be once the baby is born and it’s rarely talked about. My kid never had any shots after he was born. I’m also not sure why any doctor would give their patients 11 shots nor does any generally give 11 shots in one day. That doctor should had been reported. I have no doubt 11 vaccines in one time causes vaccine injury and it seems to me there is more an issue of doctirs than there is of the CDC. The only time parents enter legal issues due to vaccines is within the public school. You either need the records or the waivers and if you have neither, the school refuses entry and the longer the child is not in school, you’re responsible for truancy. Truancy is the legal matter.
Apraxia terms either oral or limbs, Global Apraxia often refers to cerebral palsy, which can happen by stroke or other causes too like mistakes during birth, premature babies are high risk too. MRI’s can determine if there was a stroke.

February 28, 2009 at 4:12 am
(37) AutismNewsBeat says:

(21) Grace says:

“The garbage in the vaccines plus the relative assault on an already injured immune system just added insult to injury, so to speak.”

What do you mean by “garbage in the vaccines?”

Given that children born since 2001 receive far less TCVs than children born in the 90s,
why aren’t we seeing a decline in autism?

Also, which vaccines, if any, do you feel are not necessary?

February 28, 2009 at 5:48 am
(38) Tanners Dad says:

This is your best post in the few years I have been reading it. Bottom Line common sense. Parents are simple creatures, we just want what is best for our children. I think parents would be ok if there is some collateral damage from vaccines if it were acknowledged (of course only if it were not their child). Most people would say if this is the case, then we should support the parents. All we are asking for is support, therapies, and respite. Take a couple of dollars out of the vaccine lobby. Thanks again…Best post award from Tanners Dad!

February 28, 2009 at 8:38 am
(39) Mark B says:

There is just one word needed to describe the cause of Autism that is the word “Plastics.” Independent studies such as the one performed by the Chapel Hill Group have concluded back in the mid 1990′s that BPA is directly related to causing Autism, ADD and many cancers. Of course the plastics and chemical industries have used there influence on politicians to prevent any banning of this known artificial hormone. BPA is used throughout our food chain. It leaches from plastic bottles, epoxy linings of water pipes, canned foods, even baby bottles and baby formula containers. This artificial hormone is already known to cause major problems with developing brains. 93% of people in the USA have tested positive for BPA in their blood. It is so pervasive that the chemical, plastic and food packaging industries have petitioned the FDA to list BPA as a food additive rather than a chemical. Canada has banned BPA from use in baby formula packaging and baby bottles in 2008. Big tobacco knew about cigarets causing cancer just as the plastics and chemical industry know BPA causes Autism, ADD and Cancer. In short we are all being poisoned for profits. Focus on the plastics people.

February 28, 2009 at 10:44 am
(40) Codysmom says:

Sandy he was my first child if i had known then what i know now they wouldnt have been able to bully me in the hospital Our state does not recognise any Exemption but religious exemption I tried that with his brother they told me because we had had shots in the past we couldnt file religious exemption This stuff is not as cut and dry as people think its suposed to be Our ped just dumped us because i refused a Dtap booster for my Autistic child because of the High fevere risks Now i am not anti vaccine I did vaccinate my second child BUT he got only single does shots and he didnt start getting them till he was 4 yrs old

February 28, 2009 at 10:57 am
(41) Codysmom says:

When it comes to doctors and vaccines doctors will tell you anything to get you to give that jab and they are not always honest in reporting side affects Example My son got his chicken pox shot at 6 because it was nt required when he was litte. One of the listed side affects of this shot is pnemonia. My son got Pnemonia from the shot and was out of school for 3 weeks and in the emergency room 4 times . Yet the doctor did not report this I had to report it . Then my son got chicken pox anyway the next yr and for a week the doctor would NOT tell me what was wrong with him because he knew i would not be happy The school nurse forced him to tell us because he had exposed pregnant women in our school Its not as eazy to say NO as people think It really isnt

February 28, 2009 at 11:04 am
(42) Sandy says:

No body would really care if DSM was used, who had what criteria, what caused that delay in the child as long as the kids who showed any delay was able to get the help they needed. Who really cares if it’s a spectrum or PDD. Almost every person shares some quality of autism-like symptoms.

The DSM = Diagnostic and Statistical Manual of Mental Disorders and is created by the American Psychiatric Association, which only looks at Psychiatric piece of the diagnosis.That is why they only include other Psychiatric disorders to be ruled out, but no other medical issues.

What mimics autism other than Psychiatric? Look it up. It’s interesting that one only limits to the DSM and excludes the other possibilities out side of the Psychiatric field.

The difference however is when one claims evidence through vaccine court. That’s when we better know the surrounding fact and diagnosis and that’s where this topic generated from. It’s clear in both cases the courts made a distinguishing clarification that has since been twisted. It then is clear that in the future, a simple statement of vaccines cause autism, via these courts, is not true nor the message the court was saying. The attorney himself said when asked about getting a MMR vaccine that he’s a fan of vaccines, this one small case and it’s odds does not out weigh the benefits of the vaccine. He also never used the word autism in his case. He took the court through the process- gad a vaccine, caused so and so, which that then caused so and so.

February 28, 2009 at 12:08 pm
(43) Sandy says:

I’m not too sure that the doctor would report pneumonia since it already is a known side effect, but they should just the same. When it comes to any vaccine, more so the Varicella, no vaccine is 100 percent accurate for each person. Many people get chicken pox more than once when exposed. 1:10 that have that vaccine will still get chicken pox anyway. A doctor that wouldn’t tell you your son had chicken pox is not a very good doctor.

Currently, I’m not aware of any state that only accepts religious exemptions. I do know for the longest time 2 states had no exemptions at all but that has changed. I have never heard that once you have given vaccines, that you then can never claim religious exemptions. Maybe that’s just your state, I know many people who’ve done it.
But the religious is tricky, and the use of it should be carefully decided or people will end up on the Travolta’s side of the fence.

February 28, 2009 at 1:06 pm
(44) Codysmom says:

The state of Maryland only allows Relgious or Medical Exemption not parental choice We do have Medical Exemption for the MMR because the doctor decided it was best since thats when he stopped speaking My son never missed a milestone till the age of two then one day he started beating himself in the head and screaming non stop And no one would tell me why till he was 5 I knew it was bad what ever it was but they kept telling me i didnt know what i was talking about he was fine Heck i thought he had a brain tumor

February 28, 2009 at 2:44 pm
(45) Sandy says:

Maryland alone has interesting educational laws to begin with when it comes to medications. The birth vaccines have really never been linked to much of any thing. The deal with them is why babies need it to begin with for the most part. I personally wouldn’t had minded the Vitamin K shot myself. You never know if that one in a zillion babies will be yours. As for the rest of the vaccines after birth, there’s been many MD’s that practice alternative for years. You don’t need a waiver until your child enters day care or public school. The vaccine schedule is ‘recommended’ schedule to begin with. My sister for no other reason than having no insurance did not vaccinate her son and still had him seen for issues that needed treatment. His vaccine schedule started at age 4 and by the time he entered Kindergarten, he didn’t need a waiver.

But any of that is past history, the fact is whatever the choices were or what we didn’t know about then hardly does good now except to help other’s consider vaccine choice prior to the birth of their baby. I’d bet we all have plenty of stories of doctors too. I have a real good one of when I was 16 and took my 2 year sister to the doctor for a cold and that doctor have her the MMR vaccine without parental consent. The doc knew my mom’s feelings and that my sister never had one vaccine but he took advantage that I was there. Who’d want that doctor for your kid?? Who wouldn’t report that doctor? Bad doctors give 9 to 11 vaccines at one time, or give a vaccine when a kid is sick. Not al doctors are bad. 11 vaccines including the MMR as your son had makes it hard to know anything but 11 is way too many for one day. It would be hard to know if it was the MMR, Datp or HiB or the combination of them all. One also has to keep in mind when one says 11 shots, they’re probably not talking 11 jabs but vaccines that contain more than one thing such as the MMR is for 3 things. If one looks at the vaccine schedule alone, it’d be hard to know which kids only received the MMR and which got that and others along with it. My kid received more than just the MMR.

February 28, 2009 at 3:10 pm
(46) Codysmom says:

I agree that 11 is to many and yeah i ment 11 as in combo not as in individual shots He got his shots at the health department though my insurance didnt cover vaccines or well baby visits i wish his diagnosis wasnt under the Autism specturm I could do a heck of alot more for him if it was say a dx of CP or something like that My insurance wont cover anything Autism related . Infact my they flat told me well he is autistic he should be getting SSI i guess someone forgot to tell them SSI is income based and we dont get it ha

February 28, 2009 at 3:40 pm
(47) Sandy says:

That’s what the autism- insurance bills are for, so insurance companies cant deny autism services and claim it’s an educational disorder. This leaves parents forced to rely on that school system which no matter where you live, the educational system has budget issues galore and that small amount of service time they give hardly amounts to anything. My private insurance wasn’t like that. My kids request for services all had autism stamped right smack on it. All the insurance requested was 60 goal setting. I’ve never had a problem getting private O.T and S.P and I can if I wanted have yearly updated diagnosis. I also have no problem getting a psych covered either. I once took my kid to the ER after a car accident, I peeked at the ER paper work the nurse left for a second and in bold red right on top was Autism LOL!

Private insurances have been pawning off services for autism for far too long, and even if you did qualify for SSI, those funds get cut too. I’m guess more and more cuts will be seen yet. If employers would include coverage for autism services like O.T and S.P, then when companies bid for the account, they’d have to include that coverage. So it’s not just a private insurance issue, it’s what package the employer accepts for their employee’s out of those bids.

February 28, 2009 at 7:37 pm
(48) Sandy says:

There’s a loop in many states- if you don’t qualify for SSI, your child may still qualify for Medicaid per their disability- you’d check into that per a county worker.

February 28, 2009 at 9:31 pm
(49) Codysmom says:

Thanks Sandy we have whats called an Autism waiver here that is suposed to help with services but there is a 3 yr waiting list and My son isnt concidered severe enough to qualifie for it He does get help thru school infact he probably has the best IEP in his school district but i had to fight and higher legal help to get that for him too He has come a long way from when they first told me I would one day have to instatutionalize him to now they have hope he will one day live on his own

March 5, 2009 at 3:10 pm
(50) Hugo says:

I think that there is (at least) a flaw in the line of thinking of the author: in first place, there is nothing in common about the three cases of headache presented first (except from the ache), and that is not what happen in ASD. In second, there is a broad line between a symptom like a pain and behavioral symptoms like those of ASD. As a SLP, I wish autism could be cured with an aspirin, I can be one of a few people around that would be happy bein unemployed!!!!

March 5, 2009 at 3:28 pm
(51) autism says:

Hugo – the headache story is intended as a metaphor, not a direct comparison.

I think it is fair to say that the symptoms of autism (social and communications deficits) are common among all people on the spectrum, though the etiology of the symptoms may be different. And I think it’s also fair to say that 1:1 intensive intervention is almost always effective, to some degree, for people with autism. In addition, aspirin can be likened to therapeutic treatment for autism in this sense: aspirin, like therapy, can improve the symptoms – but it can’t change the underlying cause of the problem.

Obviously, there’s no magic fixit pill for autism. But that was not what I was suggesting in the first place.

Lisa

March 5, 2009 at 4:17 pm
(52) shell says:

Lisa,
I have to agree with Sandy about brain injuries being misdiagnosed. I work in a school for severe and profoundly impaired students. Some of them are diagnosed with autism despite a severe anoxic event at birth or after choking, having a stroke, etc. I have heard our local developmental pediatrician say at the clinics he attends at our school that he disagrees with the autism diagnosis on these types of students. He feels they are severely cognitively impaired due to the brain injury. Students with severe mental impairments often have limited communication, poor social skills, sensory issues, repetitive and self-stimulatory behaviors that are similar to autistics. If there has been a brain injury, I think it would be very rare as the doctor you quoted said as a cause of autism.

March 5, 2009 at 6:30 pm
(53) Daniel Rosenthal says:

This is not so much a comment as a question.
An individual I know has practically stopped
eating because he hears voices telling him
that people are trying to kill him by poison-
ing his food. He will only eat food that he
has bought and cooked himself. He has been
diagnosed with Asperger’s syndrome and OCD–
but this certainly does not seem like
Aspergers or OCD to me–it sounds more like
paranoid schizophrenia. Am I right or wrong?

August 23, 2009 at 10:12 pm
(54) rachel barron says:

I want to know if lack of oxygen during labor, as well as improper use of forcepts,shoulder dystoshis,double nucal cord, all handled improperly could have esulted in a brain injury to my child causing his autism

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