The article which follows is an open access NIMH abstract to which I add nothing except to say that many with autism, including my son, also suffer from epilepsy. It is not to be taken lightly and for those who need life time care the care should be properly trained and oversight should be careful and complete. The full article is also available free on line and in pdf format.

Recognizing and preventing epilepsy-related mortality

A call for action

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1. Correspondence to Dr. Devinsky: od4@nyu.edu

1. Published online before print December 16, 2015, doi: http:/​/​dx.​doi.​org/​10.​1212/​WNL.​0000000000002253Neurology February 23, 2016 vol. 86 no. 8 779-786

• Free via Open Access: OA
• Abstract
• OA Full Text
• Full Text (PDF)

ABSTRACT

Epilepsy is associated with a high rate of premature mortality from direct and indirect effects of seizures, epilepsy, and antiseizure therapies. Sudden unexpected death in epilepsy (SUDEP) is the second leading neurologic cause of total lost potential life-years after stroke, yet SUDEP may account for less than half of all epilepsy-related deaths. Some epilepsy groups are especially vulnerable: individuals from low socioeconomic status groups and those with comorbid psychiatric illness die more often than controls. Despite clear evidence of an important public health problem, efforts to assess and prevent epilepsy-related deaths remain inadequate. We discuss factors contributing to the underestimation of SUDEP and other epilepsy-related causes of death. We suggest the need for a systematic classification of deaths directly due to epilepsy (e.g., SUDEP, drowning), due to acute symptomatic seizures, and indirectly due to epilepsy (e.g., suicide, chronic effects of antiseizure medications). Accurately estimating the frequency of epilepsy-related mortality is essential to support the development and assessment of preventive interventions. We propose that educational interventions and public health campaigns targeting medication adherence, psychiatric comorbidity, and other modifiable risk factors may reduce epilepsy-related mortality. Educational campaigns regarding sudden infant death syndrome and fires, which kill far fewer Americans than epilepsy, have been widely implemented. We have done too little to prevent epilepsy-related deaths. Everyone with epilepsy and everyone who treats people with epilepsy need to know that controlling seizures will save lives.

FOOTNOTES

• Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article. The Article Processing Charge was paid by FACES.

• Received July 1, 2015.
• Accepted in final form October 29, 2015.

• © 2015 American Academy of Neurology

This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially.

Some Harsh Truths About Complex Autism SPECTRUM Disorders - What Should Be Done in NB?

Autism Spectrum Disorder is a complex, neurological  disorder.  

There are some persons with autism who have specific talents and abilities and the entertainment industry and even some serious news organizations love to tell their stories. They are truly feel good stories to see some one with special gifts they can share with the world. The reality though is that autism is a disorder, literally a spectrum disorder.  The harsher realities of that spectrum disorder are, with some exceptions,  generally ignored by the mainstream media which tends to focus on feel good, success stories of higher functioning autistic persons like Temple Grandin in the US or Michelle Dawson in Canada.

Some of the  harsh realities faced by many with autism disorders:

1. Between 40% (US CDC Estimates) and 50% (World Health Organization estimate) of persons with an autism disorder also suffer from an Intellectual Disability.

2. Approximately 30% of persons with autism suffer from epilepsy.  And when I say suffer I mean suffer.

I have seen my severely autistic son with intellectual disability,  who also has epilepsy,  collapsed on Main St. Fredericton in the middle of winter from a grand mal/tonic clonic seizure. I have rushed upstairs to pull him out of the bath tub when he suffered a tonic clonic seizure while he was bathing.

The effects of the seizure medications can change the lifestyle of an autistic person including weight gain, shortened life expectancy and even SUDEP (Sudden Unexpected Death in Epilepsy).

On one occasion my son suffered an adverse reaction (as determined by the Dr. Chalmers ICU team} called Rhabdomyolysis which is described on Medline Plus as "the breakdown of muscle tissue that leads to the release of muscle fiber contents into the blood. These substances are harmful to the kidney and often cause kidney damage."

Conor during his six day stay in the Dr. Chalmers Hospital ICU, recovering thanks

 to the great work of the Chalmers ICU team, from his Rhabdomyolisis, 

adverse reaction to his seizure medication at the time. 

3. Self injurious behaviors are common in many persons with autism disorders. In some cases it may be a reaction to sudden internal pain, external sensory overload or anxiety.

Self Injurious Behaviour: Conor used to Bite his Hand EVERY DAY

when he was placed in the "inclusive" mainstream classroom where he was stressed out

by the sensory overloads. When he was moved to a separate location in the 

school to receive his autism specific ABA based instruction the biting ceased. 

He has since been accommodated outside the mainstream classroom and loves 

school displaying anxiety if the thinks school may be cancelled. 

Self-Injurious Behaviour can result from internal physical pain as appeared

 to happen in the series of pictures above taken on a pleasant, quiet Saturday

 morning where Conor was happily enjoying the swings when he began fiercely smashing his head.

WHAT SHOULD BE DONE? AN AUTISM CENTRE BASED NETWORK OF AUTISM SPECIFIC GROUP HOMES WOULD IMPROVE THE LIVES OF MANY WITH MODERATE TO SEVERE AUTISM DISORDERS

In NB parent advocacy resulted in the highly respected UNB-CEL Autism program and the early autism intervention program that was recognized by the Association for Science Treatment in the US as a model for consideration by other Canadian provinces. Parent advocacy also resulted in the autism specific training of education aides and teachers in our schools and prompted the NB government of the day to reverse its previous decision to close the Stan Cassidy autism team located in Fredericton.  

Fredericton is where NB's autism expertise has developed. It is a centralized location which is why it is the capital of NB. As a location an autism center in Fredericton would reduce travel time for families with severe adult autism members who could reside there.  Autism, especially at the severe levels is a challenging complex disorder for everyday life and in emergencies. An autism centre in Fredericton could  operate efficiently in providing consultation and oversight to autism specific group homes located in communities around the province in close proximity to families just as has already been done for early autism intervention with training provided in Fredericton and treatment facilities in different communities. 

SUDEP Awareness Day October 23, 2016 - SUDEP, Epilepsy and Autism

October 23, 2016 is SUDEP Awareness Day. The acronym SUDEP stands for Sudden Unexpected Death in Epilepsy.  The Epilepsy Foundation site has an informative page about SUDEP which is set out below before the Epilepsy Facts page of Epilepsy Canada. Persons with autism and their famiilies should be aware of epilepsy and the possible risks of SUDEP. The information below from Epilepsy Canada indicates that approximately 0.6% of the Canadian population has epilepsy. B y comparison Autism Speaks on its Autism and Epilepsy Resources page estimates that as many as 33% of persons with autism also suffer from epilepsy an extraordinary difference from the general population.  

Autism and Epilepsy Resources

It is estimated that as many as 1/3 of individuals with autism spectrum disorder also have epilepsy. Epilepsy is a brain disorder marked by recurring seizures, or convulsions.

Experts propose that some of the brain abnormalities that are associated with autism may contribute to seizures. These abnormalities can cause changes in brain activity by disrupting neurons in the brain. Neurons are cells that process and transmit information and send signals to the rest of the body. So overloads or disturbances in the activity of these neurons can result in imbalances that cause seizures. 

To learn more about how to recognize and treat epilepsy, visit the Treatments section of our What is Autism page.

Recognizing Epilepsy Symptoms

Seizures can begin at any age. Characteristic symptoms include:

• Unexplained staring spells
• Stiffening of muscles
• Involuntary jerking of limbs
• Facial twitching
• Unexplained confusion
• Severe headaches

Other less-specific symptoms can include:

• Sleepiness or sleep disturbances
• Marked and unexplained irritability or aggressiveness
• Regression in normal development

Types of Seizures

Like autism, epilepsy exists on a spectrum. Severity varies widely among people with epilepsy. There are several types of seizures, each with somewhat different symptoms:

• Tonic-clonic seizures are the most common. Also known as gran mal seizures, they produce muscle stiffening followed by jerking. Gran mal seizures also produce loss of consciousness.
• Absence seizures can be difficult to recognize. Also known aspetit mal seizures, they are marked by periods of unresponsiveness. The person may stare into space. He or she may or may not exhibit jerking or twitching. 
• Tonic seizures involve muscle stiffening alone. 
• Clonic seizures involve repeated jerking movements on both sides of the body. 
• Myoclonic seizures involve jerking or twitching of the upper body, arms or legs. 
• Atonic seizures involve sudden limpness, or loss of muscle tone. The person may fall or drop his or her head involuntarily.

SUDEP: Sudden Unexpected Death in Epilepsy

We know that the combination of autism and epilepsy is often associated with overall poor health, and in extreme circumstances, premature death. Though most neurologists and physicians choose to ignore this frightening topic, it is important to know that in rare occasions, epilepsy can be fatal. The incidence of Sudden Unexpected Death in Epilepsy (SUDEP) ranges in different studies from 0.9 – 93 cases per 10,000 people per year (Tomson et al. 2008). 

SUDEP is more likely in people with uncontrolled grand mal seizures, or those who are having seizures but not taking adequate doses of antiepileptic medications. Causes include pauses in breathing, heart rhythm problems, brain dysfunction, or a mix of these. Click here to learn more information about SUDEP from epilepsy.com. 

There are various strategies to help prevent SUDEP. Obviously, controlling seizures as much as possible is the best option. Finding the right medicines and ensuring that your loved one takes the proper dosage at the proper time is critical. There are lots of researchers and companies currently working on seizure monitors to notify caretakers when a seizure is beginning. There are currently some seizure monitors that families have found helpful as the monitors are able to alert them when a seizure is occuring or about to occur. A few bed monitors are listed in the resources below. 

About SUDEP: A Deadly Result of Uncontrolled Seizures

How common is SUDEP?

People with epilepsy die prematurely at a higher rate compared to the general population.¹The most common cause of death from epilepsy is sudden unexpected death in epilepsy, known as SUDEP.

There are at least 2,750 cases of SUDEP each year — meaning that almost 1 in 1,000 adults with epilepsy will die as a result of SUDEP every year.² For those adults with uncontrolled seizures, the risk increases to 1 in 150.³

When is SUDEP likely to occur?

SUDEP almost always associated with generalized tonic-clonic seizures and is less likely afterfocal (or partial) seizures.

Learn more about types of seizures and their associated risks.

Reducing the Risk of SUDEP

Experts agree it is imperative to reduce the number of generalized tonic-clonic seizures experienced by people with epilepsy.

Having a generalized tonic-clonic seizure increases the risk of SUDEP for a person with epilepsy. This singular fact makes an indisputable case for urgently addressing seizure control.

Uncontrolled seizures can pose a deadly threat for people with epilepsy.

Understanding and Preventing Risk Behaviors

There are a number of situations or behaviors that can increase the risk or likelihood of seizures. To help people with epilepsy reduce risk of seizures and SUDEP, experts have identified four actionable behaviors. This essential "to-do list" includes:

1. Take medication as prescribed
2. Get enough sleep
3. Limit alcohol
4. Strive to stop seizures

Epilepsy Facts

Did you know?

• Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works. It is a symptom of a neurological disorder - a disorder that affects the brain and shows itself in the form of seizures.
•  Epilepsy is a disorder, not a disease; it is not contagious.
•  Approximately 0.6% of the Canadian population has epilepsy. This includes those who take anticonvulsant drugs or who had a seizure within the past 5 years.
• Due to the stigma surrounding epilepsy and the prejudice with which society has historically treated people with epilepsy, many with the disorder are reluctant to admit it or to seek treatment. Thus the prevalence of epilepsy is likely much higher.
• Each day in Canada, an average of 42 people learn that they have epilepsy. Each year an average of 15,500 people learn they have epilepsy; 44% are diagnosed before the age of 5, 55% before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are young children and senior citizens.
•  In approximately 50% of cases of childhood epilepsy, seizures disappear completely.
•  In 50 - 60% of cases, the cause of epilepsy is unknown. In the remainder, the following causes are most common: brain tumour and stroke, head trauma of any type. The more severe the injury, the greater the chance of developing epilepsy.  Injury, infection, or systemic illness of the mother during pregnancy, brain injury to the infant during delivery may lead to epilepsy and aftermath of infection (meningitis, viral encephalitis)* poisoning, from substance abuse of alcoholism
•  Events that may trigger seizures include:  stress,  poor nutrition,  flickering lights, skipping meals,  illness, fever and allergies, lack of sleep, emotions such as anger, worry, fear and others, heat and/or humidity.
•  The major form of treatment is long-term drug therapy. Drugs are not a cure and can have numerous, sometimes severe, side effects.
•  Brain surgery is recommended only when medication fails and when the seizures are confined to one area of the brain where brain tissue can be safely removed without damaging personality or function.