So Is It Really Autism?: The search for medical signs
According to Dr. Fernando Miranda of the Bright Mind Institute, maybe not. A report in the May 19th Good Morning America/ABC News describes some children who were initially diagnosed with autism, and later found to have Landau-Kleffner Syndrome. For some of the children, anti-seizure medication has produced dramatic results and Dr. Miranda is said to insist that “you have to look inside the brain to determine what’s wrong,” via MRIs and EEGs.
The ABC report portrays parents as greatly relieved to know that there is a medical issue for their child’s disorder, and that the child does not have autism:
To watch Beckett [Kavanaugh] today, you might think he has a bit of trouble speaking, but it’s minor. You’d never think he was autistic. He’s being mainstreamed in kindergarten, in a school that he attends with his brother.
But that is yet another thing [his mother, Sarah Kavanaugh] has had to fight for, because the autism label stuck for so long it was hard to remove.
She’s also had to battle conventional wisdom in the medical community. Despite the EEG results, other doctors she’d seen in the past told her Beckett’s seizures didn’t meet the standard criteria for treatment. He wasn’t having enough seizures, in other words.
Doctors told her to take Beckett off the anti-seizure drugs, and Kavanaugh did without telling anyone.
A few weeks later, Beckett’s speech therapist called, very concerned. Beckett was sliding backward quickly, Sarah was told, so she put him back on the drugs.
Typically with anti-seizure medicine, the course of treatment is no more than four years. In that amount of time, the seizures usually clear up as the brain is literally retrained to stop seizing.
Many types of anti-seizure medicine are in use for other symptoms, such as bipolar disorder. But there is great debate within the autism medical community about when anti-seizure drugs should be used and about how severe the seizures have to be before they are treated.
Further complicating things, these seizures can often be completely invisible to the naked eye, or mistaken for staring or daydreaming — symptoms typical of autism.
We’ve speculated again and again that a seizure might be behind some of Charlie’s difficulties. Charlie’s had two MRIs and an EEG (not a sleep one) and there’s been no sign of seizure activity. By coincidence, the pediatric neurologist who Charlie sees specializes in seizures and epilepsy and he’s been very sure that Charlie is not having seizures. We’ve a few friends whose children do have Landau-Kleffner and/or epilepsy and there are differences in the types of teaching and other treatments that a child best responds to.
There’s something about finding a medical, biological, physical cause for a child screaming over and over or knocking his head on the car window that is reassuring. If you know that it’s a bad stomachache—or constipation from eating too much of certain things, perhaps—-plus a bad headache that is the reason for a tough day, a parent tends to feel that he or she can do something to “fix” it. I was reminded of this yet again this afternoon: Charlie asked to go swimming, got dressed in his swimsuit, sat in a chair unmoving. My suggestion to put on his shoes so that we could go brought on a bout of crying which continued in the car. I had to stop—-once at a major intersection—-three times and try to talk and calm down Charlie, who was almost in the back of our stationwagon at one point.
Jim and I think that Charlie’s having definitely entered puberty has a lot to do with these seemingly sudden outbursts of crying, anxiety, and head-swinging. I have been trying to recall my own adolescence, which was not happy; Jim has similar memories of being a miserable pre-teen. We know we’ve entered a new stage on the long road with Charlie. And when I think back to how I struggled to explain what I was feeling when I was 13, and think of how limited Charlie’s speech is, I hear how much he’s trying to say, even though the words aren’t there. I hope that we can sometimes pinpoint an actual reason for why Charlie is upset; I know that too often we may not, and we have to keep listening and learning.
The ABC News suggests that autism is a “label” better lost and one certainly feels some relief to find out the reason for a child’s illness. But: In the very recent past—sadly and terribly—a local mother here in New Jersey killed her middle-school son, who had been recently diagnosed with epilepsy. Families need to know that there is a lot of help and support for children with special needs and/or serious health issues and that there much that can be done.
And that, any label is just a label, and that it’s just the first step in trying to figure out how best to truly help one’s child.
Tags: asd, asperger, autism, autsm blog, brain, brain blog, Diagnosis, eeg, epilepsy, legal, mri, murder, parents, pdd-nos, seizure, special educationRelated Stories
POSTED IN: Adolescence, Crime, Diagnosis, Medicine, Neuroscience
26 opinions for So Is It Really Autism?: The search for medical signs
C. S. Wyatt
May 20, 2008 at 5:23 am
I have complex partial seizures, resulting in long periods of “absence” from reality. Medications can help, but they also leave me quite slow mentally.
There’s little doubt in my mind (pun) that the brain abnormalities, lacking a better term, found with seizures are going to help resolve some forms of autism. Autism is probably not “one thing” but a set of things with similar symptoms. Each might require slightly different treatments to improve a quality of life.
My sensitivity to the world is much worse with some medications. To me, this is interesting and points to some neurological aspects of my nature. Other medications dull me to everything.
It would be great for some individuals, and their families, if seizure medications helped a lot. I keep hoping for that “magic” that will make me behave a bit more normally. This story does give me some reason to believe there is a better future for the next generation.
ange
May 20, 2008 at 6:57 am
My oldest has defined structural differences in his brain (missing his corpus callosum, colpocephaly, etc.) and meets the criteria for PDD-NOS. He has had an MRI and a couple of EEGs. My youngest doesn’t appear to have structural differences, but also meets the citeria for PDD-NOS. He has had an MRI and some bloodwork (he became failure to thrive, pretty sick as a toddler but healthy now). The oldest presents like a child with ADHD and bipolar, the little one is more OCD and dyspraxic….our whole family could qualify for a handful of labels in the DSM! The autism label is a means to services for us. All I know is that their brains work differently, and we try to find the best ways to help them get to where they want/need to go.
Bless you and Charlie as you go through puberty. I think that is the number one thing that scares the crud out of me. I am in perimenopause (in my early thirties!) and the way the changing hormones effect my functioning is ridiculous, frightening at times, frustrating, and overwhelming. I just can’t fathum that for my children.
RAJ
May 20, 2008 at 8:24 am
It is interesting that Dr. Miranda is calling for pediatric neurologists to become more involved in autism research and treatment. Autism has always come under the domain of child psychiatry.
The APA announced its working group on autism and other developmental disorders with the working group charged with producing new diagnostic criteria for autism to be contained in DSM-V scheduled to be published in a few years with field trials to commence next year.
The last two editions of the DSM were chaired by child psychiatrists, Dr. Edward Ritvo in 1987 (DSM-II-R) and Dr. Fred Volkmar in 1994 (DSM-IV).
The new working group is chaired by Dr. Susan Swedo, a pediatriac neurologist specializing in the association between autoimmune disease and neurodevelopmental disorders, including autism.
I view this as a breakthrough by the APA and is consistent with placing the research in autism under the domain of pediatric neurology rather than child psychiatry with autism gradually becoming viewed as a medical condition rather than a problem related neuropschiatric and behavioral conditions.
http://pn.psychiatryonline.org/cgi/content/full/42/16/10
http://www.ncbi.nlm.nih.gov/pubmed/11466169
RAJ
May 20, 2008 at 8:34 am
PS. My daughter was diagnosed by a pediatric neurologist. She thought my daughter was not autistic but was suffering from severe developmental delay and had enough ‘autistic-like’ symptoms to qualify for a PDD/NOS diagnosis (DSM-III-R 1987).
Maureen
May 20, 2008 at 9:32 am
Kristina–loved your clincher sentence, it is imperative that professionals and families understand that children are not labels and that labels should only help to get the services and supports needed. I think we need to keep studies like this one in mind though as the push for insurance coverage continues–if ABA coverage is limited to children diagnosed with Autism, Aspergers or PDD, and research proves that some children withh autism-like behaviors have some other diagnsosis (epilepsy) we may limit access to services/supports (I would venture to guess that the epilepsy medication doesn’t preclude the need for ABA therapies).
Rose
May 20, 2008 at 10:33 am
The brain is an organ, just like any other of the body.
passionlessDrone
May 20, 2008 at 10:48 am
Hi Raj -
“I view this as a breakthrough by the APA and is consistent with placing the research in autism under the domain of pediatric neurology rather than child psychiatry with autism gradually becoming viewed as a medical condition rather than a problem related neuropschiatric and behavioral conditions.”
Very nicely stated!
- pD
Matt
May 20, 2008 at 11:00 am
So, you clear up the seizures and the autism clears up? Where have I heard this (in a way ‘louder than words’) before? Not to project a diagnosis on someone, but shouldn’t things like this be considered in other cases of ‘recovery’.
Annie
May 20, 2008 at 11:01 am
I’m still chewing on the concept of why it perhaps suddenly doesn’t count as autism anymore if you find a medical explanation for the symptoms.
If one day researchers identify all the various multifaceted causes of autism, does autism somehow cease to exist?
Maureen, your point about insurance coverage is one of my concerns as the definition conversation continues. I keep hearing the figure that 1 in 4 kids with autism will develop seizures at some point, and my daughter’s among them. And medicating the seizures has not removed the autistic symptoms for her, not by a long shot.
Matt
May 20, 2008 at 11:20 am
“I’m still chewing on the concept of why it perhaps suddenly doesn’t count as autism anymore if you find a medical explanation for the symptoms.”
It still does count. That’s idiopathic (we don’t know the reason) and non-idiopathic (we think we know the cause) autism.
Estimates now are that about 40% can be linked either genetically or otherwise to some cause.
The difference here is that the children moved past the autism-symptoms.
So, it isn’t the identification of the cause, but the loss of symptoms that define these children as non-autistic.
Steve
May 20, 2008 at 11:26 am
My son has been on seizure meds for nearly a year, and while there has not been the dramatic improvements in speech described in the article, we continue because the bottom line is that is the only course of treatment anyone has recommended based upon a specific medical diagnosis (in his case, an abnormal 24-hr EEG). I agree that labels are deceptive and autism broad description for a complex set of neurological factors.
Also the diagnosis of Landau-Kleffner Syndrome is no panacea - the site linked says that by no means does medication necessarily lead to speech recovery, it mentions cases of recovery in months or years or not at all.
John Fryer
May 20, 2008 at 11:38 am
And the band plays on
It doesnt matter if the children have DSMIII, DSM1V, some queer syndrome, PSD or mercury poisoning or ASD.
We have an epidemic of illness and death to young children and we can bandy about names for the problem all day long.
The only clear thing is whatever you call it or however you treat it we have an epidemic and to deny obvious evidence of harm from toxic exposure and the lack of explanation or cause of the illness means we are sailing in the dark and wrecking the ship
and the band plays on
Annie
May 20, 2008 at 11:48 am
Matt, I guess when I read the ABC News piece, I don’t see that the distinction they’re presenting is based on the symptoms abating.
Here’s a quote: “After more tests were done, including a sleep EEG, it was determined that Beckett almost certainly isn’t autistic, Miranda said. He has a version of Landau Kleffner syndrome, a rare brain seizure disorder that can masquerade as autism.”
So as soon as they saw the seizure patterns, and identified it as Landau Kleffner, it no longer counted. That line of thought is what concerns me.
I would much prefer that the conversation continue along the lines of ideopathic and non-ideopathic autism, and wouldn’t it be great if an increasingly larger slice of the pie “became” ideopathic, as more and more causes are identified! I’m not thrilled at the prospect of autism being defined away in increments, though, unless it does in fact hinge upon a corresponding decrease in symptoms.
Annie
May 20, 2008 at 11:53 am
Whoops, mixed up my ideopathic and non. Switch that!
John Fryer
May 20, 2008 at 11:53 am
Arthur Allen of the Huffington Post makes the point that old people are being diagnosed with autism today and hence there are a few older people with this condition.
The first case of autism goes back to 1933 and despite not finding a cause in more than 70 years it means that the ladies diagnosis need not be something unusual unless there are another million with the same problem of ASD.
Even then doctors who singularly fail to find the cause can surely not suddenly on diagnosis be completely accurate? There is much to indicate that ASD is in fact the child like form of Alzheimers Disease.
Further do we know if the lady in question has always had these symptoms throughout her life? It may be she developed the condition only recently. Not at all clear.
David Kirby and Dan Olmsted have looked through papers amounting to hundreds of boxes of archives to find the connections between early cases and mercury exposure of a particular kind distinct from mercury emissions from power stations whether in the USA or China.
Arthur makes a mindboggling mistake when he compares inorganic mercury to that of organomercury.
Not so much Chalk and Cheese as Truth and Fiction, Arthur?
Kristina Chew, PhD
May 20, 2008 at 11:57 am
@Steve,
Hope your son continues to do well.
My friends whose children have LKS have noted that they’ve seen their children lose skills (speech in one case) with the seizures. And because there are fewer children with LKS, it can be harder to figure out best practices for teaching—-a child with an autism diagnosis who was on seizure meds in one of Charlie’s classes seemmed to have more trouble with behaviors, as the ABA that Charlie responds to did not work so well for the other child.
Caroline L.
May 20, 2008 at 1:00 pm
Thank you for alerting your readers to this ABC News story, Kristina. I did not know about it and my son has LKS.
A label is just a label…all students require an appropriate education -the problems develop when any student, regardless of their diagnosis, is treated harshly.
The education system should assume competence not teach to a low level using 20 year old special education models. (physical restraints, seclusion, yelling, name calling students, laughing about them as if they cannot understand, etc.)
I have long believed that ASD/PDD-NOS label is often attached in order to ‘get services’ but can backfire as the child gets older and is stuck in inappropriate settings or warehoused.
For any child who experiences regression especially, a 24 hour sleep EEG read by a qualified neurologist should be part of the diagnostic protocol.
LKS variants include ‘pre-verbal’ children who regress in motor skills, etc.
The ABC story paints a happy picture - the reality for our child is debilitating migraine-like headaches, side effects from medications, and his epilepsy gets worse every year. However, when he is feeling well, no one is better company…just like Charlie :)
resilientmom
May 20, 2008 at 3:51 pm
Hi Kristina,
I am responding to your reflections and concerns about puberty. I recognize your assessment here, as our son seemed transformed during those years. His behavior was erratic, outbursts intense and overall demeanor more obsessive than ever.
The good news is that following puberty he truly improved. Truth be told, behavioral strategies needed to be consistent and we all had to be on the same page, but I am here to tell you that we survived on the other side.
xRobin
Kristina Chew, PhD
May 20, 2008 at 4:22 pm
@resilient mom,
I’ve heard that about puberty—-that after it passed, things indeed “truly improved.” May I ask how long it lasted?
Here’s Scientific Blogging with some caveats about EEGs and MRIs for autistic children.
resilientmom
May 20, 2008 at 5:45 pm
My recollection is that we saw an increase in obessive behavior when he was 11 years old, consequently we tried medication. The following 2 years were difficult, due to treatment vs. adverse reaction to medication (we believed that anafranil induced more agressive behavior). Following age 14-15 he was more reasonable and easier to negotiate with. We then weaned him from all medication and it wasn’t until he was 18 that we decided to try abilify (another parent recommended that it diffused quirky behavior) He was evaluated recently and a doctor who had not seen him in a long time assessed that he was very impressed with his calm.
Hope this helps.
xRobin
waterlotus
May 20, 2008 at 5:52 pm
I have worked with many “autistic” kids. I have come to believe that the most revealing “symptom” is the inability/unwillingness to focus visually, unless the object is of extreme interest… say the moving propeller on a toy aircraft or other such “fascinating” movement..
Kristina Chew, PhD
May 20, 2008 at 6:55 pm
@waterlotus, very interesting—-visual processing is something my son has always struggled with. I think he tries to focus on objects but it’s not easy for him to control his eyes.
thorton
May 20, 2008 at 10:43 pm
EEGs and MRIs are commonly suggested to be done after an autism or PDD/NOS diagnosis (if you have a knowledgeable pediatrician).
We had an EEG on our son and it showed that he had absent seizures. After a week of seizure meds, he showed significant improvements in concentration. And soon after his behaviors diminished. It’s been one of the more significant pieces of the puzzle for us.
Kristina Chew, PhD
May 20, 2008 at 10:59 pm
@thorton, we were wondering about absent seizures for Charlie, but it doesn’t look like it. But one never outrules any possibilities…..
@CS Wyatt,
You wrote–
It was a parent whose child takes seizure meds who noted to me that perhaps a change in dosage or something else might cause certain changes in Charlie that we’ve no direct way of knowing. There was a time when Charlie kept throwing his plate of food—he’d stare at it and then the plate, and the food, were airborne. My friend pointed out that the meds might be affecting how things tasted and smelled, and that what once seemed delicious now seemed something like repulsive.
thorton
May 20, 2008 at 11:23 pm
It is hard to fully rule out seizures; especially absent seizures.
Our daughter had a clean EEG, but the neurologist said the same thing; you can never fully rule them out.
Genetic Cause for Childhood Absence Epilepsy Identified
Jun 2, 2008 at 12:25 am
[…] be 100% certain about anything, though—-hence the continuing interest in the possibility of medical signs and/or tests to detect conditions; to find answers. Tags: asd, asperger, autism, autism blog, brain, […]
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