Dachel Media Update: Measles In the Media

National Autism Association: The Leaders in Autism Wandering and Safety Issues

NAA timeline
By Kim Stagliano

A special guest was in attendance at the State of the Union address on Tuesday night.  Her name is Avonte memorial Vanessa Fontaine, and while the name might not ring a bell, you surely remember the name Avonte Oquendo.  Ms. Fontaine is Avonte's Mom. Senator Chuck Schumer of New York  invited Ms. Fontaine to the SOTU address to stand as an example of the tragedy of autism wandering and the lack or protection for our children from toddlers to teens and beyond, and to create awareness and support of Avonte's Law.   We are grateful to Ms. Fontaine for putting a face on the worries and very real fears of so many of us in the autism community.

Long before this evening of Presidential pomp and circumstance, one autism organization has been toiling in the trenches to create not just awareness of the safety issues in autism, but acting to prevent injury and death.  That organization is National Autism Association. They work quietly and efficiently.  Sometimes too quietly - as is the halmark of a "doer" and not just a "Rosie Ruiz."*

We're going to remind you until we are blue in the face, NAA is making a difference for the autism community.  From the NAA blog:

In an effort to gain support for Avonte’s Law, U.S. Senator Chuck Schumer (D-NY) announced Monday that he has invited Vanessa Fontaine, mother of Avonte Oquendo, to attend the State of the Union Address Tuesday evening according to news reports.

Avonte’s Law would offer protections to prevent – and respond to – wandering incidents, namely in the autism community. The legislation would allocate funding towards assisting families of special needs children in need of tracking devices, as well as provide other services, such as first responder training and education.

In a 2010 presentation before a federal committee, the National Autism Association (NAA) sounded the alarm on autism-related wandering incidents, requesting immediate response, research, training for law enforcement, and tools for families. NAA’s request led to the 2012 study published in Pediatrics, which showed that 49% of children with autism are prone to wandering away from a safe environment, such as school or home. Over the last three years, roughly 15% of wandering incidents reported by the media have ended in death according to NAA.

“NAA is in full support of Avonte’s Law and have used our data and experience with the issue – both on a personal and professional level – to provide the Senator’s office with well-rounded guidance for the legislation that focuses both on prevention and response aids for families,” said NAA President Wendy Fournier. “It is our hope that Ms. Fontaine’s story, and the stories of thousands of autism families, will create swift and thoughtful action to prevent more tragedies like Avonte’s.”

Avonte Oquendo’s remains were found in the East River in January 2014, three months after he left his Queens NY School unsupervised. The 14-year-old had autism and was nonverbal. His disappearance echoed hundreds of similar cases involving a person with autism, including two other children with autism who went missing that same weekend as outlined in a New York Times Op-Ed by NAA.   Read the blkog post at the NAA site.

* From Wiki - I'm from Boston and remember this story well:  Rosa Ruiz Vivas, usually known as Rosie Ruiz (born 1953, Havana, Cuba) is a Cuban American who was declared the winner in the female category for the 84th Boston Marathon in 1980, only to have her title stripped after it was discovered that she had not run the entire course.

House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.


Betty Bona

Hi Roger,
When Kerry Kennedy (sister to Robert Kennedy, Jr.) was arrested for failing to stop after a car accident, her defense was a complex partial seizure. She claimed not to remember anything after entering the freeway until an officer was at the window of her stopped car. Trace amounts of ambien (a sleep med) were found in her blood, and I believe there was some speculation that it could have triggered the seizure. I think there are other cases of people "sleepwalking" and "sleep-driving" on ambien. I know Kerry Kennedy was not convicted, but I'm not really familiar with the exact ruling. I have been interested in this type of seizure because I know a few young people who claim to not remember incidents of this sort as well. The problem for them is that alcohol was also involved (though they claim not an unusually big amount for them). No one cares to look further once alcohol is involved. The other thing I note is that the two incidents I am most familiar with both occurred on an evening with a full moon. Parasites are active at the full moon, and I wonder if that activity affects mitochondrial function or some other vital function in a negative way - negative enough to put a susceptible person over the edge and into seizure mode.

I know the seizure disorder you had was caused by your cerebral folate deficiency. Still, each particular incident may have been triggered by something. Is it possible that a majority of these incidents occurred near the full moon? It is really impossible for a young person to be believable when they claim that, "yes I was drinking, but that was not what caused me not to remember". But I do actually believe them. Probably just gullible.

Cherry Sperlin Misra

Thankyou, Roger Kulp, That is very interesting and informative.

Concerned momma

Slightly off topic but CNN just had a piece on about measles/Disney. Elizabeth Cohen did keep repeating the bs about the "science" proving there are no problems with vaccines BUT she did also at least mention that many parents site dishonesty and distrust for CDC and pharma in terms of a reason why they don't trust vaccines. It seems to be really at a critical point. It's funny that they never mention the #CDCwhistleblower.

Roger Kulp

I am always very puzzled why so few people seem to connect the dots between wandering in autism and seizures.This includes those who believe autism is medical.Wandering is a big feature of seizures.Complex partial seizures in particular.

Look at this description

    Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.

    During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn’t know what he or she is doing; and cannot remember afterwards what happened during the seizure.

    Although someone may appear to be conscious because he or she remains standing with eyes open and moving about, it will be an altered consciousness - a dreamlike, almost trancelike state.

    A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

    Although complex partial seizures can affect any area of the brain, they often take place in one of the brain’s two temporal lobes. Because of this, the condition is sometimes called “temporal lobe epilepsy.”

    “Psychomotor epilepsy” is another term doctors may use to describe complex partial seizures.

    Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.

    This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple, unorganized movements over and over again.

    Sometimes people wander around during complex partial seizures. For example, a person might leave a room, go downstairs and out into the street, completely unaware of what he or she was doing.

    In rare cases, a person might try to undress during a seizure, or become very agitated, screaming, running or making flailing movements with his arms or bicycling movements with his legs.

    Other complex partial seizures may cause a person to run in apparent fear, or cry out, or repeat the same phrase over and over again.

    Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.

Sounds a lot like what you see when a person with autism wanders doesn't it?

Has anyone talked to autistics that are verbal,and asked them if the had any idea where they were or what they were doing while they were wandering?Or if they had any memory of the episode?

I know about this,because I had repeated episodes of wandering for decades that were just like this.I have had my life saved a number of times countless times by strangers who pulled me out of the way of oncoming traffic.I have been picked by police a number of times,and held without arrest for my own safety.It all came to a sudden end when my cerebral folate deficiency was discovered.CFD is just one of the many causes of seizures in autism,but seizures are one of the most common features of autism.And one of the more easily treated nes.

Laws and tracking devices are fine,but they are merely a Band-Aid.What we need is to encourage every child and adult with autism who has a history of wandering,to have a full neurological and medical workup for seizures.There must be a staggering number of children and adults on the spectrum who have undiagnosed seizures.Very shameful indeed.

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