Conor Suffers Another Seizure 6:05 a.m. September 2, 2017

Conor's latest tonic clonic (grand mal) seizure  took place at 6:05 a.m. this morning just after I placed his breakfast in front of him. .  I was expecting a grand mal seizure soon as it had been roughly 3 1/2 months since his last seizure in mid May and they have tended to happen 3 to 4 months apart.  This seizure happened while Conor was sitting on the couch, watching a movie and starting to eat his breakfast.  He started shaking violently and slid down off the couch.  I held him to keep his head from striking the floor and slid some soft blankets under his head.  He lay on his side and some of the food he had started to eat came out of his mouth.  Eventually the violent shaking subsided and he was able to speak and, with some help, move.  We went to the market for 2 of Dan's sausages and everything seems pretty noramal. 

Anyone with a  child with autism, especially if their child is developmentally delayed,  (persons with autism AND intellectual disability are much mo,re likely to suffer from epilepsy/seizures) would be wise to consult their medical advisers.  Epileptic seizures are very common among persons with autism and they can have serious, dangerous, even deadly consequences.  The UK Autistica report, Personal tragedies, public crisis, based on a large high quality Swedish study found that persons with autism tend to die between 16 to 30 years prematurely with the high numbers found among those with autism, intellectual disability and autism.  It is also worthwhile to note that the Autistic report indicates that in cases of people with autism seizures do not appear until their teenage years unlike in the general population when it is likely to show up in the child's first years.  In Conor's case his seizures appeared in his teenage years.

Each grand mal seizure is a reminder of my son's scary future prospects. With autism, intellectual disability and epilepsy he is at serious risk of decades early premature mortality.  For now though he is with us and I am relieved and happy that it happened again while I was just feet away.

Premature Mortality In Autism and Intellectual Disability - Epilepsy

Personal tragedies, public crisis

"Between 20% and 40% of autistic people also have epilepsy and this rate increases steadily with age – in contrast to a one percent prevalence rate in the general  population.1 0 In the typical population, the risk of epilepsy is greatest in a child’s first year, decreasing in risk through childhood, then remaining stable and not increasing again until old age. 11,12,13 In the majority of autistic people who develop epilepsy, their seizures do not appear until their teenage years, much later than average.5,14 This suggests that the underlying triggers of epilepsy may be different in autism. Autistic adults who also have a learning disability have been found to be almost 40 times more likely to die from a neurological disorder relative to the general population –with the leading cause being epilepsy.3"

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Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time.

Think Twice Before Leaving An Autistic, Epileptic, Intellectually Challenged Person Unsupervised While Bathing

Left: Connor Sparrowhawk an autistic, epileptic 18 year old with learning difficulties 

who drowned while suffering a seizure during an unsupervised bath in a UK care facility. 

Right: Connor Sparrowhawk's mother Sara Ryan who testified it never crossed 

her mind that her son would be left to bathe unsupervised

Combined photo from photos on Oxford Mail

A UK mother has testified during a tribunal review of a Doctor's responsibility,  and the role his performance might have played in the death of 18 year old Connor Sparrowhawk an 18 year old autistic, epileptic youth who drowned when he suffered a seizure while taking a bath unsupervised in a UK NHS care facility.  The linked article from Oxford Mail states that Connor Sparrowhawk also suffered from a learning disability.

The doctor involved has admitted 30 professional failures including obtaining his history of symptoms, failure to keep medical records etc. which apparently resulted in Connor's  unsupervised bathing.

Connor Sparrowhawk's mother, Sara Ryan,  is reported to have fought back tears as she testified:

"We just assumed he was being supervised in the bath. It was not something that came to my mind. It was almost one-to-one support on the unit.

"It had a whole team of specialist staff and there were five patients. It just never crossed my mind."

Our son suffers from severe Autism Disorder, profound Intellectual Disability and epileptic seizures including tonic clonic or grand mal seizures.  He has never been left to bathe on his own even prior to his first observed tonic clonic, epileptic seizure.  

When our Conor, now 21,  goes to the bath one of us is with him.   We do not want to lose him.

Deadly Discrimination Against Adults With Autism Disorders Continues In Ontario (and New Brunswick)

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica.

Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties.

People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615

Deadly Discrimination against adults with autism continues in Ontario  despite a new declaration of full coverage for autism for children and youth to 18.   Discrimination against adults with autism is done by governments pushing 2 misrepresentations that are also advanced in the public media by some specific interest groups:

1. By pretending that autism is NOT a life shortening medical disorder.

2. By pretending that autism is a childhood condition that does not extend into adulthood.

With these 2 falsehoods already entrenched in the public imagination it is very easy for governments to ignore the realities that autism is in fact a debilitating medical disorder that shortens life expectancy by 16-30 years for those with high functioning autism (16 years) and those at the lower end of the autism spectrum (30 years).  Policies aimed at providing the adult care required for so many with autism are simply non existent in Ontario, New Brunswick and most of Canada.

Deadly Discrimination against autistic adults also continues  in NB.  NB has been recognized internationally as a leader in early autism intervention.  We have also seen education aides specifically trained in autism.  But, as in Ontario autistic adults are simply ignored by our provincial governments. As in Ontario autistic adults can expect shortened life expectancy shortened by 16 to 30 years.   Discrimination against autistic adults in NB is deadly.

It is impossible to say whether those with shortened life expectancy could be restored to the general average with proper care, education and treatment throughout adulthood.  What is certain is that shortened life expectancy will continue if nothing is done to address the challenges of adults with autism.

At the high functioning end of the autism spectrum depression and resulting suicides are a primary cause of the reduced life expectancy.  At the lower end the epilepsy and seizures that are present in a large percentage of those with autism and cognitive disability are a primary cause.

What could make a difference in either case? Access to counselling and support and intensive residential care and treatment of autism and epilepsy would certainly improve if not totally restore to general population levels the life expectancy of persons with autism disorders in NB, in Ontario, and elsewhere in Canada.

There is More to Real Autism Awareness than Pretty Blue Lights - 4 Years Ago We Almost Lost Our Buddy, Our Autistic Son Conor

Conor at the Intensive Care Unit of the Doctor Everett Chalmers 

Hospital, Fredericton, April 2013 when his life was at serious risk

from an adverse reaction, Rhabdomyolisis, to his seizure meds.

April, Autism Awareness Month has come and gone and to my knowledge little to no real awareness has yet been raised about the serious risks faced by those with autism spectrum disorder particularly those with intellectual disability and in much higher rates than among the general population ... seizures and the medications to treat seizures.  4 years ago as I was reminded by a Facebook reminder notice we almost lost our autistic son Conor to an adverse reaction ( a condition which was diagnosed by the treating hospital ICU team as Rhabdomyolisis)  to his seizure medication.  Conor's conidtion fits the model described in the following BMJ article.  Severely autistic, combined with learning difficulties which also fits him with the very high 20-40% of persons with autism who also suffer fro epilepsy.  The harsh reality staring Conor and all of us who love him is that persons in that group severe autism, learning difficulties and epilepsy die as much as 30 years sooner.   Not the type of autism awareness you generally hear about in the blue light autism is beautiful blend of autism "awareness".

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

"Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!

 http://autisminnb.blogspot.ca/…/conor-is-safe-now-but-we-al… In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity. Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012. Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed. Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU. Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be. Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.

To everyone involved with protecting and saving our buddy Conor his Mom and Day say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy"

Autism awareness should create awareness of the serious, life threatening conditions commonly associated with autism disorders and limiting life expectancy by 16 to 30 years

We were fortunate to have access to excellent medical care and attention from the ICU and Emergency teams, their supporting staff and our family doctor,  To all of them I say once again THANK YOU FOR SAVING OUR SON's LIFE. 

To everyone involved with "Autism Awareness" events though I say start teaching the public about all aspects of autism disorders including some of the most frightening realities. 

Prime Minister Trudeau and Premier Gallant: Autism Is a Complex Health Issue For Consideration in Your Negotiations

NB Premier Brian Gallant Campaigning with Prime Minister Justin Trudeau During the 2014 NB Election;  Photo by Harold L Doherty

 Dear Prime Minister Trudeau and NB Premier Gallant:

Autism Is a Complex Health Issue For  Consideration in Your Negotiations

Media reports indicate that the Province of NB and the Government of Canada are "going it alone" on negotiation of health care funding. I have been advocating in NB, along with other parents and concerned academics and professionals,  for evidence based autism treatment and services for persons with autism disorders and I urge you to specifically consider negotiating both funding of medicare for evidence based autism services and an adult group home network with a center in Fredericton for permanent care of those with severe autism disorders so that they can live near their families in facilities with autism and related disorders expertise. 

 Here in NB the government has responded well, to parent advocacy,  at the early intervention level with its internationally recognized early program established by former Premiers Lord and Graham. Premiers Lord and Graham also initiated the training of education aides and resource teachers. Consultation for evidence based applied behaviour analysis has also been provided up to age 16. Given that autism disorders are complex life long neurological disorders often accompanied by intellectual disability and epilepsy it is very unfortunate that in NB the Department of Health has not worked with Child and Family/Social Development to establish a group home  network around the province, close to families and specific to autism with a center in Fredericton to provide training, oversight to the group homes and for those severely affected by autism and related disorders, including my son, a permanent residence.  

Provision of medicare funding of ABA coverage for autism should be a component of the autism group home network and center and should be considered in your negotiations.  The Liberal Party of Canada passed a resolution supporting full funding for medicare coverage of applied behaviour analysis (ABA) for autism spectrum disorders by amendment of the Canada Health Act at its Winnipeg Convention 2016. It is my understanding that support for the resolution was very strong including prominent Liberal Bob Rae who I know first hand from discussions in the kitchen of the late Andy Scott and in a Toronto meeting with Medicare for Autism Representatives, has long had a strong interest in autism issues.

Image from Bob Rae, MP! 

@BobRaeMP on Twitter

Please negotiate full funding for applied behaviour analysis for autism in NB for autistic persons throughout the lifespan.  The availability of ABA training at the adult level would be a major component of a serious, humane attempt to address the life time challenges facing adults with complex autism disorders.

Respectfully,

Harold L Doherty

Conor's Dad

Queen Elizabeth II  Diamond  Jubilee Medal Recipient (Autism Advocacy)

Member of the Board of Directors of Medicare for Autism NOW!

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

SHOW AFFILIATIONS

| + SHOW FULL DISCLOSURES

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.