Showing posts with label asd. Show all posts

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.

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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.

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Autism in a Lab Dish? Call Me Unconvinced


The hot autism news of the day is that scientists have replicated autism spectrum disorder in a lab dish. A study published in Cell asserts that the authors have used stem cells to develpop  neurons.  I am not convinced. 
Maybe someday when we know what autism actually is we can replicate it but today when we can not yet agree on whether autism includes those with no obvious life functional limitations and when very serious challenges facing the 75-80% of persons with Autistic Disorder who also have significant intellectual disabilities are dismissed as resulting from co-morbidities I don't understand how anyone can claim to have replicated autism spectrum disorder in a petri dish.
Interestingly the Cell study Abstract indicates that Rett syndrom was used as an autism spectrum genetic model:
Autism spectrum disorders (ASD) are complex neurodevelopmental diseases in which different combinations of genetic mutations may contribute to the phenotype. Using Rett syndrome (RTT) as an ASD genetic model, we developed a culture system using induced pluripotent stem cells (iPSCs) from RTT patients' fibroblasts. RTT patients' iPSCs are able to undergo X-inactivation and generate functional neurons. Neurons derived from RTT-iPSCs had fewer synapses, reduced spine density, smaller soma size, altered calcium signaling and electrophysiological defects when compared to controls. Our data uncovered early alterations in developing human RTT neurons. Finally, we used RTT neurons to test the effects of drugs in rescuing synaptic defects. Our data provide evidence of an unexplored developmental window, before disease onset, in RTT syndrome where potential therapies could be successfully employed. Our model recapitulates early stages of a human neurodevelopmental disease and represents a promising cellular tool for drug screening, diagnosis and personalized treatment.
The DSM-5 working groups have recommended that Rett's Disorder not be included in the DSM-5. The rationale for excluding Rett's Disorder is based on it's very specific and known etiology and the brevity of the autism like symptoms of the condition:
Rett's Disorder patients often have autistic symptoms for only a brief period during early childhood, so inclusion in the autism spectrum is not appropriate for most individuals.

Like other disorders in the DSM, Autism Spectrum Disorder (ASD) is defined by specific sets of behaviors and not by etiology (at present) so inclusion of a specific etiologic entity, such as Rett's Disorder is inappropriate.
Given the DSM-5 position on excluding Rett's Disorder from the Autism Spectrum Disorder it is difficult for this humble dad to see how a genetic model based on Rett's can be said to result in a replication of ASD in a dish.
I absolutely support autism research,including stem cell research, but the claim itself blaring in news headlines that autism has been replicated in a petri dish is in need of a good scrubbing with some  soap and water.

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Saskatchewan, Canada's Autism Wasteland, Is Exhibit 1 in the Case for a National Autism Strategy

More than three years after I described Saskatchewan as Canada's Autism Wasteland the label still accurately describes the state of autism services in the prairie province according to a FEAT opinion article in the Star-Phoenix. 

The Families for Effective Autism Treatment article argues that some money has been spent but it has been spent ineffectively and cautions anyone with an autistic child not to move to the "Land of the Living Skies" as Saskatchewan markets itself:

It sounds impressive when you hear about all the money being put into autism and programs the government is running, but ask families across Saskatchewan about how well this money is being spent. Ask our government for current and regular report cards. Ask what successes it has accomplished with these new programs and positions. Ask it to provide statistics on how many individuals receive adequate and professionally trained support.

Ultimately, individuals with autism continue to lose.

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Our children do not have time to waste while valuable dollars are spent creating expensive, ineffective services that aren't based on evidence and research. Our children need the help of proven therapies before they become another sad statistic lost in Autism's Wasteland.

Let your voice be heard for those who cannot. Saskatchewan can't afford to keep spending millions of dollars for ineffective programs that do not help individuals with autism. Let's use the money wisely and try not to re-create the wheel.

SASKFEAT is demanding immediate individualized funding, which is not income tested, until an acceptable and proven autism strategy is in place in Saskatchewan -- a strategy that addresses the lifetime needs of all individuals with ASD, and that is delivered across this province. Our families have been waiting and suffering long enough.

3 years after Saskatchewan started to fund autism services they still do not have an effective autism strategy in place. It is the autistic children of Saskatchewan who lost their 3 years of development potential, particularly during their early years between 2 and 5, who will have lost the most and who will pay the price for government and bureaucratic nonchalance or incompetence. 

Saskatchewan, Canada's Autism Wasteland, is also Exhibit 1 in the case for a National Autism Strategy.

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