Friday, February 15, 2013

The Damaging Impact Of Seizures On Individuals With Autism


Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site.  I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders.


The Damaging Impact Of Seizures On Individuals With Autism

Newark Valley, NY, February 15, 2013 – Many of us know someone whose family is dealing with autism; once considered rare, now 1 in 88 children in this country are diagnosed with an Autism Spectrum Disorder (ASD).

Silently Seizing:  Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders (AAPC Publishing) by Caren Haines, RN, and valuable input by Nancy Minshew, MD, deals with the overwhelming challenge for those living with silent seizures. Many are confronted by anger and falsely accused of disorderly conduct, indecent exposure and drug abuse; while some are even unfairly arrested because the bizarre actions exhibited during a seizure have led to frequent misdiagnosis, medical mismanagement and, in the worst case, commitment to a mental institution.

Because they are difficult to diagnose, or due to a lack of awareness and understanding, as many as 30% of all children and young adults with ASD may have undiagnosed seizure disorders. Silently Seizing is a breakthrough book that explores what most doctors won't tell you – that often the symptoms of autism are caused by seizures, undetectable with standard diagnostic tools.

At age 2, the author’s son was diagnosed with autism. By the time he was 12, his diagnosis didn't account for his uncontrollable aggression, the acrid smells that lingered in his mind and the odd voices that screamed at him from inside his head. By the time he was 18, his out-of-control behavior mirrored a mood disorder with psychotic features. Silently Seizing begins with a close-up look at this family's journey and examines a disorder that cannot always be identified in a clinical setting.

As a registered nurse, Caren Haines relied on her training to help her decipher her now 24-year-old autistic son’s perplexing behaviors. Based on knowledge gained from years of intensive research and information from top researchers in the field of autism, she is helping families become free from the debilitating symptoms of silent seizures and psychosis.

Haines’ says, “Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.”

Backed by up-to-the-minute research, Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders is a must-read book that includes sections describing autism, the seizure-autism connection, tips for diagnosing and treating seizures, as well as how to better understand children's behavior. It acts as a virtual guide to help parents navigate through this complex and mystifying disease. For more information, please visit: www.bit.ly/Rb2WBW.

Caren Haines is also co-author of Georgia, The Flying Dog, a children’s book that explores the concept of unconditional love and acceptance of our differences.

###

Established in 1999, the mission of AAPC Publishing is to be the first source for practical solutions related to autism spectrum and related disorders. AAPC Publishing is an independent publisher, targeting professionals and parents alike. AAPC Publishing strives to offer publications at affordable prices so that important resources are available to anyone with an interest in the autism spectrum.

MEDIA APPEARANCE:

Caren Haines, AAS Nursing, R.N. - Presentation and Book Signing Event at the 2013 Southeastern “Across the Spectrum” Conference - Autism/Asperger Conference and Expo

When:  February 28th, 2013 - Ms. Haines' presentation is from 11:00 am – 12:15 pm; immediately following she will be at the AAPC booth signing books.

Where: Gwinnett Convention Center - www.gwinnettcenter.com
               6400 Sugarloaf Parkway
               Duluth, Georgia   30097

ADDITIONAL INFORMATION: Hosted by: Georgia Autism Conferences and Exceptional Ed Events.  Georgia Autism Conferences strives to meet the needs of the Georgia Autism community by providing quality seminars and conferences throughout the state on topics related to Autism Spectrum Disorders.

5 comments:

Autistic Social Network said...

Hi There, I found this blog really useful and interesting reading kind regards, Autistic Social Network

Roger Kulp said...

I am glad to see that people are finally starting to get it that a lot of these so called negative or injurious "behaviors" in autism,are really caused by seizures.I wonder,if like me,a lot of these seizures aremetabolic,and do not respond to regular antieplilepsy drugs.I am proof they can go on for decades,if no real cause or treatment is found.Most mainstream neurologists have no idea how to identify or treat such seizures.

Roger Kulp said...

I am glad to see that people are finally starting to get it that a lot of these so called negative or injurious "behaviors" in autism,are really caused by seizures.I wonder,if like me,a lot of these seizures aremetabolic,and do not respond to regular antieplilepsy drugs.I am proof they can go on for decades,if no real cause or treatment is found.Most mainstream neurologists have no idea how to identify or treat such seizures.

“Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.”

All of which is said about cerebral folate deficiency,which is moving away from autism/psychiatry,to a neurological disease.I only hope more causes like this are one day found for everybody.

Anonymous said...

Check Laundau-Kleffer Syndrome... a Dx that seems to have gone underground.

I have been trying to get answers on the sumulative impact of seizures for quite some time, so I got excited when I saw this post. But it looks like this won't provide the answers I'm looking for, either.

Be warned that absence seizures(petit mal) often goes un-reported: staff view them as a "break."

There are no easy paths here: the AEDs can cause MANY problems. The "behaviour" drugs can cause seizures.

catherine sewell said...

WOW!! my son is coming up to 3.5 years and has been under assessment in the uk for nearly 2 years, his "traits" have always screamed autism at me from the age of 1 when finally at nearly 2 someone listened to my worries and decided he wasnt just a lazy boy, maybe there was a problem! After reading the preview tonight I will be purchasing the full book as I am fascinate down to the fact he was diagnosed with absence seizures in January 2014 after noticing what I called the "creepy stare" as that is exactly what it was but this was only first noticed by me in october 2013 and officially diagnosed with it in jan 2014 and he has been with me literally 24/7 since the day he was born, nobody has him overnight ever and I think he has been looked after a maximum of 5 hours in 3.5 years because he is too hard to handle (as described by family) I am now wondering if the difficulties he has is only down to the seizures or if it is a mix of both. I just wish I knew one way or the other but here in the uk they seem reluctant to give anything away and the waiting times between appointments are horrendous! Thank you for the book no one has ever mentioned the link or how the symptoms of both are mirrored but it seems from research the U.S is so much better equipped than the U.K