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The New Standard of Care in Diagnosing Autism Spectrum Disorders

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by Nicholas Saari, DDS
Autism Asperger’s Digest | November/December 2011

It is overwhelming for a parent to navigate the many-forked road to autism treatment.

And for two parents to navigate it together, well, sometimes things get tricky.

Truth be told, only light sabers could make treatment discussions with my wife more spectacular. I tend to err on the side of medical doctors. She prefers the multi-tiered treatment methods as described by moms.

Which brings me to my wife’s latest discovery: our son Caleb has undetected seizures, which are inhibiting his development. I decided to investigate. After all, Caleb’s atypical autism diagnosis is the result of behavioral assessments. Doctors tell us that the brain is the most affected system, that these developmental delays—speech and communication, social interaction, gross and fine motor skill struggles—stem from a neurological problem. But epilepsy is also a neurological disorder. Wouldn’t it seem more likely that a child with signs of autism would show electroencephalography (EEG) irregularities?

Clinical studies cite that 30 percent of individuals with autism are also affected by epilepsy, and patients with a history of language regression may be at an even higher risk. In addition, any history of fitful behavior, convulsions, or staring episodes increases the likelihood of an epilepsy diagnosis.

The neurology appointment started off a bit rocky. “Did your pediatrician, or any other doctor recommend an EEG?” the doctor asked. My wife said, “No, but…” He prematurely countered, “I don’t really deal with autism, but that’s his diagnosis, right? This is how autistic children behave. There are no clinical signs besides sleeping restlessly right? I doubt it is epilepsy.”

Only after my wife’s tears did the doctor consent to an EEG. An EEG is a useful diagnostic test. It records the electrical activity in the brain through the use of multiple electrodes, each secured with glue or tape. Each electrode records the summation of neuron activity in the location specific to the placement of the electrode. Then a recording resembling spikes and waves, based on that area’s neuron activity, is documented and compared with videotape of the patient’s clinical signs at any given time.

It didn’t take a neurologist to realize my son’s EEG looked abnormal. Even with dad eyes, I comfortably gathered enough information to understand that consistent rippling pond waves are typical. That isn’t how Caleb’s EEG appeared in one particular area; it looked more like a toddler got hold of both Etch-a-Sketch knobs after a run-in with a bag of M&M’s.
And that was a good thing, because for the last three years my son had been in occupational, speech, and physical therapies, had stayed true to a gluten-free casein-free (GFCF) diet, and had been subject to hours of floor time at home, all with marginal success. He was four with the vocabulary of an eighteen-month-old. For the first time we had a concrete lead, something besides a foggy Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS) diagnosis.

Our pediatric neurologist made the diagnosis of a variation of Landau-Kleffner Syndrome. We were informed that the irregular activity in Caleb’s brain is localized to the left side, near an area likely to cause speech and cognitive delays. Landau-Kleffner Syndrome is a childhood disorder that affects language comprehension. This inability to understand language may lead to significant behavioral and psychological problems. Some of the signs of this disorder can mimic autism spectrum disorder (ASD). Eighty percent of these children have clinically relevant seizures. Caleb is of the 20 percent that never had a recorded clinical seizure.

“Perhaps the diagnosis of PDD-NOS or ASD is not accurate, or at least not complete,” our pediatric neurologist said. After looking at the behavioral tests, he postulated that if we can control the epileptic activity, Caleb’s cognitive, speech, and behavioral abilities may improve drastically. “Of course,” he continued, “it may be autism and Landau-Kleffner.”

Without an EEG, Caleb’s epileptic disorder may never have been diagnosed. The signs he displayed seemed so consistent with PDD-NOS that no specialist recommended an EEG. My bold conjecture: EEGs or some other neurological mapping technology will soon be recommended by pediatricians for any child displaying signs consistent with ASD. It will become the standard of care.

How could it not? Dr. Aditi Shankardass, a notable neuroscientist, likens diagnosis of a developmental disorder without an EEG to the diagnosing of a heart problem without an echocardiogram (ECG). ECGs are routinely done because they have no risks or side effects. Also, they are very accurate.

Consider the risks of an EEG. The only side effect is the discomfort of losing a few hair follicles from the super glue the technician applies to the wires adorning the patient’s head. An EEG is an expensive test, it’s true. But when the expenses of behavioral therapies are considered, the cost of an EEG is nominal by comparison.

Thankfully, EEGs are quickly becoming a more routine test for children with developmental disabilities. Some research is recommending that low functioning or severely impaired children, or any child with regression of language and communication, should have an EEG as part of their comprehensive evaluation. Dr. Shankardass has been using technology even more powerful and diagnostic than a standard EEG for children with developmental disorders with astounding results.

After nine months of treatment, Caleb had a follow-up evaluation and EEG. “So doctor,” I asked, “you consider this a success?”

“Absolutely!” he said. “The gains we’ve seen on the behavioral testing are even more important than the EEG results. And his testing yesterday was remarkable. All aspects of development are testing within normal limits except speech. But even speech is miles ahead of where it was nine months ago. His EEG looks better than most people who are considered typical.”

Until my son’s anti-seizure medication regimen, his behavior was perplexing and uncontrollable. But since intervention and a clean EEG, Caleb is making steady gains in verbal communication, his energy level is normal, and his irritable moments are manageable. Controlling Caleb’s epileptic activity has been the catalyst for successful intervention for his PDD-NOS.

As research continues to reveal that subclinical brain seizures can mimic signs of ASD, I am hopeful that thousands of children’s lives will improve with anti-seizure intervention. Let us hope for prompt integration of EEG technology into developmental disorder evaluation. There are more children like Caleb out there.

Nicholas Saari is a general dentist in Minneapolis, MN. His son is diagnosed with an epileptic disorder and PDD-NOS. He blogs about family life at www.donteatus.com.

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  1. Kim Fields says:

    Watch for another great article by Nicholas Saari in our May 2012 issue of AADigest!