'I-28Sfuuy-WR10okMSia3VYeZTm2RHA2LZDel59TlF8' name='google-site-verification'/>www ghs.google.com 6dseurqgapmn gv-v6egtfduggmq3k.dv.googlehosted.com Autismwarriormama: Good News: Research for Severe Autism

Living with Autism


December 17, 2013

Good News: Research for Severe Autism

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryIt’s amazing what a 30-day stay in a hospital can do for autism research.

This is how a recent grant to study severe autism was sparked.

According to an October, 2013 article in Science Magazine, after severely-autistic children were admitted for 30 days or longer at Spring Harbor Hospital in Maine, the experience of all involved, inspired child psychiatrist Matthew Siegel, to apply for a million dollar grant.  

It’s no secret there is limited research on low-functioning autism.

“There’s a big gap in scientific research,” said Siegel, who is leading a research team to study the most severe autism cases.

“What differences are between an autistic child with high IQ who has communication skills and a kid who doesn’t speak at all and has problems with basic functioning, we don’t know…..I’m so hopeful that with this research we can help the kids who need the most help, the [autistic] children we understand the least.”

Research will take about two years and will be conducted at hospitals in New Hampshire, Rhode Island, Baltimore, Pittsburg and Colorado.

“…we are trying to determine whether we can define subgroups within the autism spectrum,” said Siegel. Despite differences among autistics on the spectrum, there are some surprising similarities. 

Interestingly, high functioning autistic persons can suffer from bouts of severe self-injurious behavior, indicating neurochemical similarities between persons with autism.

Likewise, a high functioning autistic person can have the same type of seizures as a low-functioning autistic person, indicating epilepsy is not an exclusive co-morbid factor in low- functioning autism.

The fact higher functioning autistics with epilepsy may respond more favorably to anti-seizure medication--and thus have better control over seizures—further indicates differences in excitatory and inhibitory circuitry among people on the autism spectrum.

Autistics across the spectrum also share various degrees of auditory, tactile, olfactory and gustatory hypersensitivity.

What if another difference between a high functioning and low functioning autism is rooted in varying degrees of dopamine, serotonin, GABA, acetylcholine, etc… dysregulation?  

Meanwhile, let’s hope and pray that more funding emerges for researchers with a desire to help children and adults with severe autism.  

And that Dr. Matthew Siegel and his staff spark more scientific inquiry into helping those with severe autism.  



Unknown said...

I don't know if you remember me, fastjim, from youtube but my girl is age.

How is Jamey? How are you doing? How is your family? Ages seizures have gotten worse. Literally not one day goes by without some sort of seizure activity and she has at least one grand mal a month now. Seizure meds have done nothing to help. Neither is any supplements or vitamins. She's on a strict gluten dairy free and mostly soy free diet and still pressing her stomach against objects. Still will head bang and bite. Still need constant routine. She's got a new 1:1 who works great with her but now DDD is threatening to cut the budget and take the benefits away. A grand later for a lawyer and everything is still up in the air however; she is learning to use a blender and bake cookies thanks to her new 1:1. And isn't stuck in the house all day or being abused at a day program. Many improvements.

I love the idea of studies on severe autism! It's about time I say!

Kim Oakley said...

Yes, I remember you! I am so so sorry about this news. Please don't give up hope. I have seen the videos of Age and see that she has head banged a lot, so it's not implausible that she has chronic trauma from concussions. She needs a CT scan, and for sure better seizure meds. ASK for brand name seizure medication as it appears to medically necessary in her chronic seizures. Also, the fact she keeps "pressing her stomach against objects" presents as someone who is in gastrointestinal pain and needs medical testing to rule out such. Ask for a CT scan with contrast for the head and neck. Also, an abdominal ultrasound to rule out anything that would be causing Age chronic or intermittent pain in her abdomen area. I'm also sorry to hear she was being abused at day program. Many people don't understand how hard it is to find good caregivers. The system does NOT do an adequate job in training caregivers of any level on how to handle severely autistic people. We need a "Gordon Ramsey" show to expose the hideous faults in our system serving disabled. The reason such a show hasn't been thought of is because so many agencies and individuals don't want this debacle to be exposed. Surely, we need better treatments for severely autistic people, AND we need better screening and training for those who are being paid money to work with our most vulnerable autistic populations. For sure, Age's increase in seizures is a huge telltale sign that something isn't going right in her homeostasis and doctors have a duty to rule out any and all underlying and undetected issues, so Age and her caregivers can feel they aren't trapped in an endless cycle of confusion and hopelessness. I'm sure Age has something going on inside her that is causing her pain and frustration. It's now up the "experts" to find out what that is and bring this precious girl the hope and healing she so desperately needs. Stay strong fastjim, and keep me posted. Love and hugs from me and my family.

ktjo2 said...

Many parents have turn to CBD oil for seizure control. Charlotte's Web is being harvested in Colorado. Research it. I get mine from Hemp meds in CA. Real scientific hemp oil.

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