Tuesday, September 01, 2015

Conor's Superstore Seizure




Yesterday Conor, his mother and I went to the Superstore on Main Street in Fredericton. As we moved to the express cash to pay for our purchases Conor began convulsing and a full scale tonic clonic or grand mal seizure was underway.  I was able to hold him carefully as he fell to the floor to prevent head injury, placing him on his side so he would not choke.  A shopper, who happened as it tourned out to be a paramedic, came by and provided assistance, including timing the convusions which lasted approximately 3 minutes. and providing assessment commentary as Conor recovered.  The 3 minutes of convulsions and subsequent recovery time may not seem like much but if you are holding your son's head up off the floor while he convulses on the floor of a busy grocery store it can seem much longer. 

Three well trained employees of the Superstore also provided assistance directing shoppers away from our immediate area towards a different cash, forming a line between us and other shoppers, getting a thick blanket for under Conor's head, offering moral support and suggestions, making   a wheelchair available for when Conor was ready to be moved to my car, and actually accompanying us to our car in the parking lot.

Thank you to the Superstore who had trained staff on site to assist in seizure situations, thank you to the 3 employees who provided assistance and support and thank you to the paramedic who happened to be shopping in our immediate vicinity as Conor begain convulsing.

Thank you everyone.




Saturday, August 29, 2015

Canada's REAL National Autism Strategy - Shawn Murphy's Bill C-304


There is currently a group receiving money from the Harper government, purportedly to develop a "National Autism Strategy". It is an election year handout from a government which has consistently opposed a meaningful role for the federal government in ensuring that autistic children and adults in Canada receive the treatment and services they need to live meaningful, healthy lives.  

Parents in Canada have fought for many years with varying levels of success for government coverage of evidence based ABA treatment for autism disorders.  In 2006 former Charlottetown MP Shawn Murphy articulated a REAL National Autism Strategy when he introduced Bill C-304 which was defeated by a Harper Conservative-Bloc Quebecois coalition vote.   


L: Former Charlottetown MP Shawn Murphy 
C: NB Senator Jim Munson 
R: Late Fredericton MP Andy Scott
3 Strong Advocates for a National Autism Strategy

Federal politiicans and subservient autism charities should stop pretending and stop yakking about a National Autism Strategy if they do not intend to adopt the REAL National Autism Strategy proposed in 2006 in Shawn Murhpy's Bill C-304:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304
_____________________________________________
FIRST READING, MAY 17, 2006
_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Sunday, August 23, 2015

Autism Disorder AND Epilepsy (But NO SUDEP!!!) at 6:05 AM


I was awake at 5:30 this morning, had some breakfast, and was enjoying a mug (not a cup, a mug) of coffee when I noticed that the time was 6:05 am.  Startled I jumped up to see if everything was OK with my son Conor.  Conor suffers from severe autism disorder and epileptic seizures, including half a dozen grand mal or tonic clonic seizures, since last Christmas. One feature of Conor's autism disorder is that he gets up at precisely 6:01 a.m. every morning.  He often wakes up before 6:01 but stays in bed until that time and then gets up.  Until this morning I can not recall the last time he might have slept in past 6:01.  I was worried when he had not come out of his room by 6:05. 

I worried because of the epileptic seizures from which he suffers. (My fear was brief; gone as soon as I ran into his room and saw him stirring)  Some who suffer from such seizures have been known to die in their sleep with no clear explanation, a condition called SUDEP, sudden unexpected death in epilepsy.  A special program  called The Center for SUDEP Research which will be a "Center Without Walls for Collaborative Research in the Epilepsies" has been  established in the US by the National Institute for Neurological Disorders and Stroke (NINDS)  to tackle SUDEP.



 A NINDS press release provides an overview of SUDEP and a brief description of the plan of action:

"While the causes of SUDEP are currently unclear, mounting evidence points to seizures that induce structural defects and/or brain circuit malfunction in areas that control cardiovascular and/or respiratory functions. Using a multidisciplinary approach, scientists and clinicians participating in the new center without walls hope to understand what causes SUDEP and how can it be prevented.
One team of researchers will identify genes, predisposition to neurochemical imbalances, and structural irregularities in the brain that may increase the risk of cardiac arrhythmias and respiratory disruptions in epilepsy. In parallel, another team will develop a sophisticated repository for storing and sharing genetic, tissue and clinical data samples collected from 400 study participants with epilepsy per year for three years at each of 10 clinical sites across the country. This team will also analyze the collected samples to identify risk factors for SUDEP."
Some may question why I would have been apprehensive about the possibility of SUDEP when my son did not come out of his room at 6:01 am.  The primary reason is that his adherence to the 6:01 routine was until this morning  almost without exception, a feature of his severe autism disorder.  The second reason is that a good friend who was, and is, very active in autism advocacy in New Brunswick lost her adult son to SUDEP. In that case her son appeared to be sleeping in past his usual time just as my son did this morning ordinarily a blessing for both parent and son. Her son, like mine, suffered from both autism and seizures, and was not sleeping in, tragically he had passed in his sleep.
As the parent of a son with severe autism who suffers from epileptic seizures I can not take any break from routine for granted, even very thankfully as it turned out this morning, one resulting from a few minutes of extra sleep. 

Tuesday, August 04, 2015

Surprise! A Meaningful Autism Disorder Study Provides Evidence of Autism's Harsh Realities


Autism is a disorder which, far beyond its core diagnostic criteria, brings with it higher than average medical conditions and psychiatric illnesses.   The health status of adults on the autism spectrum study confirms the harsh realities of autism disorders and should not be ignored or lightly dismissed by academics, mainstream media or professional "self" advocates who, despite their very high functioning levels, insist on burying the harsh realities of the severely autistic, like my son, in the mounds of autism ignorance they dump on the public landscape. As the study indicates autism disorders mean significantly higher than average psychiatric illnesses and medical conditions.  Not much joy to be found in those realities.This study though should be helpful in bringing a much needed dose of autism realities to the  public understanding of autism disorders and the harsh realities that accompany them.

The health status of adults on the autism spectrum

  1. Lisa A Croen1
  2. Ousseny Zerbo1
  3. Yinge Qian1
  4. Maria L Massolo1
  5. Steve Rich2
  6. Stephen Sidney1
  7. Clarissa Kripke3
  1. 1Kaiser Permanente Northern California—Oakland, USA
  2. 2Kaiser Permanente Northern California—Santa Rosa, USA
  3. 3University of California, San Francisco, USA
  1. Lisa A Croen, Division of Research, Kaiser Permanente Northern California—Oakland, 2000 Broadway, Oakland, CA 94612, USA. Email: Lisa.A.Croen@kp.org

Abstract

Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.