New Brunswick Needs An Adult Autism Center & Network,Today, Yesterday, 6+ Years Ago

My son Conor Doherty wearing his Adult Autism Center T-Shirt before a visit to the NB Legislature in May of 2015.  So far no one in government has taken action to prevent my son and others with severe autism and related conditions from being sent far from family to live in the Regional Psychiatric Hospital in Campbellton in MLA Donald Arsneault's riding on the Quebec NB border.  They have ignored these harsh realities and cause actual harm to many autistic adults and their families.  Meanwhile they ignore the successes in early autism training at UNB-CEL, early autism intervention developed at UNB in Fredericton and the consultation services at the Stan Cassidy Centre in Fredericton.  They also ignore the sound advice of recognized experts like Paul McDonnell.  The only obvious explanation that I can think of, which I do not suggest constitutes proof, but I can think of nothing else to explain such intransigent non action and cruelty, is political interests, promotion of riding interests over the best interests of NB's autistic adult population, particularly those with severe autism disorders who will be ripped apart from families to serve political interests.  

Proof? No I have none.  I just have no other better explanation. 

Humane Professional Adult Autism Care is on my mind as it has been for many years prior to the statement by Professor Emeritus (Psychology)/Clinical Psychologist/NB Autism Expert Paul McDonnell in a CBC interview 6+ years ago:

"Paul McDonnell, September, 2010

"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected. Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development. The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

Inclusion Requires a Range of Learning Environments

Cineplex Entertainment in partnership with Autism Speaks Canada is delighted to present Sensory Friendly Screenings. This program provides a sensory friendly environment for individuals with autism spectrum disorder or anyone for whom the environment is suitable and their families to view new release films in theatres across the country.These screenings are presented in a lights up, sound down environment.  

What do some theatre chains know about educating autistic children that NB educators do not know? Quite a bit actually. Primarily they know that, for some autistic children  environments, such as ordinary theatre showings, or  the mainstream classroom, that are appropriate for the general population can be overwhelming for some autistic children and others with sensory challenges.  

Environment matters.  That is why  threatre chains  have special screenings  to accommodate some autistic kids and perhaps other persons who are overwhelmed by loud noises and other sensory challenges.  In NB that knowledge is blocked from the mindset of those educators, particularly those educators like high profile and influential inclusion extremist Gordon Porter who believes that inclusion means that ALL children must be educated in the mainstream classroom:

Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.

“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs.

“It’s so simple, it’s that simple,” said Porter.

Gordon Porter, Session on Inclusive Education, Corner Brook, Newfoundland, April 2012

Porter ignores the evidence like that of my son who bit his hands daily in the mainstream classroom. Once removed at our request (with the assistance of on the scene educators who were witness to the self injury) the biting stopped. Since then he has received his primary instruction outside the regular classroom and participates with other students in many activities especially his favorite ... swimming. His disability has been accommodated. It is unfortunate that his accommodation is not considered in developing policy for a less extreme version of inclusion that allows for accommodated learning outside the classroom for those for whom the main classroom location is NOT inclusion it is discrimination by failure to accommodate.

There are many other credible sources who take the position that a range of learning environments in addition to the mainstream classroom are necessary to accommodate (as has been done with my son) some for whom the mainstream classroom is not an appropriate learning environment.

1. TEACCH's position on inclusion of children with autism

2. LEARNING DISABILITIES ASSOCIATION OF ONTARIO and CANADA  POLICY STATEMENT ON EDUCATIONAL INCLUSION FOR STUDENTS WITH LEARNING DISABILITIES 

3. THE FULLY INCLUSIVE CLASSROOM IS ONLY ONE OF THE RIGHT WAYS TO MEET THE BEST INTERESTS OF THE SPECIAL NEEDS CHILD - Yude M. Henteleff, C.M., Q.C.

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.