'I-28Sfuuy-WR10okMSia3VYeZTm2RHA2LZDel59TlF8' name='google-site-verification'/>www ghs.google.com 6dseurqgapmn gv-v6egtfduggmq3k.dv.googlehosted.com Autismwarriormama: Medical Mysteries in Autism: The Search for Answers

Living with Autism


December 2, 2015

Medical Mysteries in Autism: The Search for Answers

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                          As any parent of an autistic adult child has, I've spent years reading books, talking to doctors, mulling over scientific studies, secretly sobbing, pulling my hair out (sometimes literally) trying to figure out how to better help my autistic son.

Add to that, going to numerous Administrative Law court hearings to fight for my son's right to proper supports and services.

Because my autistic son has seizures AND self-injurious behavior (SIB), I have often asked myself, do these two seemingly unrelated issues have any connection?

For example, I've noticed during my son's most severe self-injurious meltdowns, his seizure activity sometimes disappears for a few days. Of course there were other times when he had both SIB and seizures on the same day, which makes this even more complicated, but when you see one in the absence of the other, it's worth asking, why?

For example, when seizure activity returns, self-injurious behavior can (not always) disappear for a few days. What kind of medical mystery are we dealing with here?

Are SIB and seizures rooted in neurons that depend on and work together, but when one is faulty these neurons get locked in a battle between inhibitory and excitatory functions--- creating a constant war for peace in the brain? What is the connection between SIB and seizure activity?

I noticed long ago that Ativan doesn't work for my son's SIB, it actually INCREASES my autistic son's self-injurious behavior.

Conversely, Ativan works great if he's having acute tonic clonic seizure activity, but give too much Ativan he comes out of seizure and starts in with SIB.

 If Ativan increases my autistic son's SIB, is it because when neurons in his brain are TOO INHIBITED by a benzodiazepine--such as Ativan--this deactivates areas in brain (i.e. choline) that need to be slightly activated to suppress self-injurious behavior?

If Ativan, a benzodiazepine targeting GABA receptors, inhibits transmission  in the locus coeruleus, could that explain an increase in SIB after loads of Ativan for seizures?

Interestingly, a study shows that self-injurious behavior can be rooted in INHIBITION of locus coeruleus (part of brain that helps you stay alert) and when it's ACTIVATED, the self-abuse decreases.

Incidentally, locus coeruleus promotes brain homeostasis and is connected to basal lateral amygdala.

Additional research shows STIMULATING basal lateral amygdala-- decreases SIB.

Another interesting fact: There's a few cases showing when nicotine patches are applied to people with a rare genetic (ADFLE) mutation causing epilepsy, the patch stops the seizures. Fascinating.

In short, these people actually NEED nicotine supplementation, because specific receptors in their brain are dysfunctional, causing a subsequent IMBALANCE in other receptors, which leads to having constant seizures.

Supplementing nicotine effectively treats their seizures.

This is mindblowing stuff. Shows how little we really know about the autism, seizures, brain, behavior connection.

Even more interesting is research showing nicotine patches can reduce aberrant behavior in autistic patients.

Why would nicotine, of all things, be involved in decreasing BOTH self-injurious behavior AND epilepsy?

This further prompts us to challenge the typical treatment of autism with benzos. The autistic brain does NOT want or need to be constantly sedated.

Even with autism and epilepsy, we must LIMIT the use of sedatives and continue to support research involving brain receptors involved in autism, epilepsy and self-injurious behavior.

Kim Oakley







Agnieszka WroczyƄska said...

Hi Kim,

I am not sure if that could be relevant to your son, but there are studies suggesting that GABA acts paradoxically in some persons with autism due to elevated intracellular concentrations of chloride in neurons - as in immature brains of newborns. This results in excitatory/inhibitory imbalance. French researchers have succesfully studied a 'simple' drug called Bumetanide to reverse it in children with ASD. Here are some papers about this and a link to a very helpful science blog written by a father who treats autism in his son:


Yes autism is medical mystery also in my son as many of his autistic behaviors disappear during his migraine attacks, but at the same time he suffers badly from severe pain for hours or even days.

Thank you for advocating medical needs of autistic people. It is so important, but neglected issue at least where I live.

Sandi a::k::a KnitMyRhino said...

I recently started wondering about severe autism, after a friend of mine's child was diagnosed. I know several kids with mild cases, even adults. But I'd never met or been around one with severe autism. I love the way you have put all of this information and videos out here. The youtube videos are incite full and get to the belly of the beast, so to speak. But that isn't why I'm thanking you today. Over the last week, I have been afflicted with severe shingles, that have been causing seizures (we haven't figured this out yet). My body has been jerking around with a mind of its own. And the shingles have been more painful than anything I've ever experienced, and I was accidentally shot through both legs 3 years ago. But back to the point. I was trying to relax while watching some of my favorite youtubers, and came across Jamie again. My body completely ceased the jerking after one minute of a video. I have fallen in love with you and your son, and I think he resonates somewhere in my brain. I'll never know the full extent of this tiny but much needed miracle. There's no scientific evidence that could speculate causation. All I know is, I'm truly grateful. I know this isn't probably even a remote answer to any questions you may have been needing answers to, but it IS a positive in my eyes. I wasn't able to find a comment section on the videos, so I followed the trail to your blog. Thank you, and please hug Jamie for me. Y'all were an answering prayer when I needed it most.

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