On the day of his death, I was concerned with the chatter that "autism killed Jett Travolta." I am concerned that such speculation will further cement misconceptions the general public has about autism.
Since then, Jett's family has released reports regarding "a history of seizures" and claims that he took Depakote for awhile until it became ineffective. This statement is intended to assuage people's concerns that Scientology may have prevented Jett from being treated for his seizure disorder.
We don't know the cause of Jett's seizures. I'm not debating this, nor whether his parents' beliefs in Scientology may have hindered his treatment.
Rather, I speak from the perspective of someone who doesn't want the public to fear autism or to picture highly disabled people when they hear that label.
The latest misleading article in the London Mirror states "Autism is often associated with epilepsy and in the US nearly half of autistic children are prescribed anti-convulsion drugs."
I'd be interested in knowing their source citation for that. What do they consider autism: just "classic" autism and Rhett's, or are PDD-nos and Aspergers included in that?
While epilepsy can be comorbid with autistic-like symptoms, I would hardly call the frequency of association "often" if all types of spectrum disorders are included. I would venture to guess that in many cases where seizure disorders are present, that condition would be the primary diagnosis with ASD-like symptoms resulting from that condition. In other words, some flavors of autism may result because of a seizure disorder, not that the autism itself causes seizures. (Also keep in mind that diagnostic labels do not describe an exact syndrome.)
It is the last half of the London Mirror statement that is most misleading, though: "...in the US nearly half of autistic children are prescribed anti-convulsion drugs."
Many people will look at that statement and believe "Oh, if they are taking anti-convulsion drugs, they must be doing so to prevent seizures."
Wrong.
There are several common drugs that are used to manage various symptoms of kids on the spectrum. In some cases, anti-seizure meds are given to help with impulse control. This doesn't mean the child has suffered any seizures - rather, that the child needs help with impulse control.
Pharmaceutical agents can be used for a variety of different reasons. Not everyone on the same drug is taking it for the same reason.
While I was in graduate school, one of my colleagues conducted an experiment on Topamax (Topiramate) for phantom limb pain in cancer patients whose tumors resulted in amputation.
Topamax can be used to control binge eating.
Topamax can be used for people with bipolar disorder.
Topamax can be used to help with migraine headaches
Topamax can be used for general pain control.
... and Topamax can be used as an anti-convulsant.
The cancer patients didn't have epilepsy. They didn't have seizure disorders. But they were given Topamax. Yes, it was originally designed as an anti-convulsant, but it can also manage pain.
Similarly, some kids on the spectrum take medications that may be popular for seizure control, but can also be used to stabilize mood or assist with impulse control.
Are some kids taking them to prevent seizures? Absolutely! But are "nearly half" of the ASD kids in the U.S. taking an anti-convulsant to prevent seizures? And specifically to prevent seizures because of autism? No, unlikely.
Just like the causes of different flavors of autism are varied, the treatments are also varied. Sometimes the best pharmaceutical agent to control unwanted symptoms happens to be an anti-convulsant. Sometimes it is an anti-psychotic - yet I'd hate for people to believe people on the spectrum are "psychotic."
Yes, it is sad that Jett Travolta died. I feel for his family given all the negative press surrounding this issue. As I've stated before:
I dislike what I have heard about Scientology and its thoughts on psychiatric disorders. I hate the stigma of mental illness and am disappointed in how cruel people can be in dismissing the biological basis of psychiatric disease.
But I'm not debating seizure disorders here. And I'm not debating Scientology here. Rather, I'm saying the chatter that "autism" killed him is wrong.
To link autism and seizures so tightly is misleading.
Comments (7)
Kari, here's something else (if I am not mistaken)-I believe the Mirror routinely tut-tuts over US pediatric medication for behavior. My take is that it is likely that UK kids are under-diagnosed and under-treated for executive-function disorders such as ADHD.
The association between epilepsy and Autism Spectrum Disorders (ASD) is complicated. Here's a pdf of a peer-reviewed paper that makes an attempt to sort it all out.
www.epilepsyfoundation.org/epilepsyusa/yebeh/upload/autismandepilepsy.pdf
Here's a link to another paper which suggests that the autism-epilepsy link is much stronger in ASD people who have lower cognitive functioning
http://www.ncbi.nlm.nih.gov/pubmed/18565495
Posted by Liz Ditz | January 7, 2009 2:52 AM
Posted on January 7, 2009 02:52
I love these posts Kari - they are so thoughtful and smart! These are very complex issues that the media typically oversimplifies. I work in psych and meds are prescribed for many different purposes then what they are designed or advertised for. Depakote is one of those everything applies meds. I have to say that, in general, I am against overuse of meds for children since I see, in the mental health system that psych hospitals are used to manage behaviors and thus "negative" behaviors get codified as "disorders" and meds are used to manage behaviors the same way rather than the more work/time/sophisticated measures of family treatment/behavioral strategies etc. It's a crime as far as I'm concerned and I am not anti-meds in idealogically since they are very useful for true disorders in a context of treatment. Sorry for the long comment! Yikes- hit another nerve!
Posted by starrlife | January 7, 2009 6:39 AM
Posted on January 7, 2009 06:39
Liz: Interestingly, it is the UK that has banned several artificial chemicals because they recognize the connection to ADHD-like behavior. In that realm, I'm happy with the UK's slant on pediatric medicine - but beyond those efforts, I'm not familiar with their philosophies. Thanks for the links to the epilepsy articles.
starrlife: Yes, I am very concerned about psych medication overuse. It is one of those things that on one hand I want people to recognize that some people need medication (and there shouldn't be a stigma to that - someone with diabetes needs insulin, why is it so horrible that someone with depression needs seratonin?) but on the other hand, I don't like the nonchalant, "Oh, let's just put him on X so he is more manageable for you" (particularly without actually observing the child.) Done carefully, pharms can be a lifesaver (and beneficial to the child, not just to the parents) - but as you know it isn't a one-fits-all thing.
Posted by Karianna | January 7, 2009 7:58 AM
Posted on January 7, 2009 07:58
I fall into the took anti-convulsants but has no seizure disorder category. I have severe migraines and tried Topamax. Unfortunately for me, the side effects were so severe that I had to stop taking it. As you said above, it's not a one-fits-all thing. Many types of drugs are used to deal with "off-label" issues, so for them to make that statement with no link to what study they are referencing is just poor journalism.
Posted by April | January 7, 2009 1:15 PM
Posted on January 7, 2009 13:15
I am a grad student studying to be a psychiatric NP (as well as a mother to one with both autism and epilepsy), and wrote a literature review paper titled Pervasive Developmental Disorder and EEG Abnormalities. Email me at sboebel@rochester.rr.com if you would like to read it. The research shows that the % of the general population that develop epilepsy is 0.7-1%, in the 0-20 y/o range. Compare this w. those on the autism spectrum, which is 25-30%. This is a significant difference! My paper got an A and I would be happy to share my research.
Posted by Sandy Boebel | January 11, 2009 3:27 PM
Posted on January 11, 2009 15:27
One more thing...AEDs (antiepileptic drugs) are often prescribed for children (and adults) with autism (or other conditions) for the purpose of stabilizing their moods. Thus they do more than control seizures. Also, much more research is needed on the subject but AEDs seem to work on the part of the brain that controls language. My daughter started on Trileptal to control her seizures but her developmental pediatrician (who diagnosed her as PDD-NOS, or mild autism) said that she might start talking more, be more articulate, etc... And he was so right; the difference was truly remarkable.
Posted by Sandy Boebel | January 11, 2009 3:33 PM
Posted on January 11, 2009 15:33
April:
Exactly -- the statistic is very misleading given the different ways in which drugs might be prescribed.
Sandy:
25-30% is not "nearly half." ;-)
I don't deny that some people with epilepsy might also have spectrum-like symptoms, but the point I was making in my post is that the cause/effect is not as deeply ingrained as some of these recent media articles imply.
I can see how a primary diagnosis of epilepsy could carry a secondary diagnosis of a spectrum disorder; but for someone with a primary diagnosis of Aspergers, for example, I would be surprised if the link was so high. (In fact, the paper Liz Ditz referenced in the comments showed 0% of the Asperger's population tested had abnormal EEGs. Of course that doesn't mean *no* Aspies have epilepsy, because we can assume they at least have the rate as the "general population.")
Why does this matter? Well, the public already has a very stereotypical view of autism. I don't want the general public to believe that all kids with autism also have serious seizure disorders that can kill (as the media is playing up with Jett Travolta.)
(As an aside: As regards the Jett-case, you know from your studies and your experience as a mother with a child with epilepsy, drugs used to "treat" this condition are not fail-proof. From an anecdotal perspective, I dated a young man with epilepsy who was very diligent about taking his medication, yet continued to have seizures, some of which were serious. Thus, the current opinion that “John Travolta and Kelly Preston wouldn’t medicate Jett for his autism, so that killed him” is misleading on many levels.)
As it is now, many kids on the spectrum aren't getting assistance because their parents (and even their doctors!) have a misconception about how “disabled” a child must be to merit a label. While I don’t want to diagnose every little delay (far from it!) I would hope those kids who need a little extra help could receive that assistance early on instead of going through a struggle that ultimately makes it more difficult (and can bruise self-esteem.)
Most of all, I wish that we could treat kids as individuals rather than expecting cookie-cutter stages of development. I don’t like label bias, but I also don’t like the assumption that all kids develop at the same rate and must be educated in the exact same way.
Again, thank you for your comment. Apologies for such a long response, but I want to be clear about my motivations for writing this post – and that rather than trying to create a black and white situation, I’m trying to avoid it.
PS: From my post, emphasized this time: "Similarly, some kids on the spectrum take medications that may be popular for seizure control, BUT CAN ALSO BE USED TO STABILIZE MOOD OR ASSIST WITH IMPULSE CONTROL." So as regards your second comment: yes - a main point of this post was that the statistic about the pharmaceuticals used was misleading as the reasons behind their use vary.
Posted by Karianna | January 11, 2009 4:53 PM
Posted on January 11, 2009 16:53