Thursday, December 18, 2014

"Professor" John Elder Robison's Limited Understanding of Autism and Autism Research


MIT Technology Review:  John Elder Robison is a professor at the 
College of William & Mary and the author of Look Me in the Eye.

John Elder Robison is a former "free ranging "Aspie", a successful businessman, writer and now apparently a professor as indicated in the MIT Technology Review article Fixing Autism Research We need to come to grips with what autism really is.  I met Mr Robison briefly at the IMFAR conference in Toronto a couple of years ago. It is not clear in what sense he suffers from a DSM5 ASD clinically significant  functioning impairment (mandatory criterion D) in relation to his "autism" symptoms so as to qualify for an autism spectrum disorder diagnosis but he has embraced the autism label nonetheless and presents himself as a voice for the "autism' community.  John Elder Robison may well be a voice for the extremely high functioning "autism" community but he certainly does not speak for my adult son who suffers, and I use the word "suffers" intentionally, from his severe autism disorder.  Nor do Robison's comments indicate in any meaningful sense that the understands what autism is in a general sense.

My adult son with severe autism disorder like many with autism disorders also have an Intellectual Disability diagnosis and suffers from seizures.  In recent years the CDC has estimated between 41-44% of persons with autism disorder also have an ID.  The WHO estimated that 50% with an ASD also suffer from ID. Many also suffer from epileptic seizures.  The estimates in that regard  vary widely but 30% is a number often cited with an even higher number of that percentage located among the severely autistic end of the spectrum. 

Like many with ASD, ID and epilepsy my son suffers meltdowns, self injurious behavior, reactive aggression, sensory issues and extreme obsessive behaviors.  Changes of any kind can be very challenging. His health is affected in many negative ways by his limited communication abiliity of any kind and no computers do not reveal an inner intelligence which he can communicate via keyboard.

Professor J E Robison complains that autism is not a disease.  I assume he means that autism is not contagious and I am sure the world appreciates that insight.  It is recognized medically as a neurological DISORDER. More recently well informed autism experts like Lynn Waterhouse have acknowledged that autism is very heterogeneous in nature and may better be viewed from a symptom perspective rather than as a uniform disorder.  Many parents of children with severe autism including me have long complained when extremely high functioning persons like JE Robison present themselves as autism experts and present a view of autism to the world based on their considerable abilities and gifts.

"Professor" Robison's life experience as an extremely high functioning free ranging Aspie gives him no  insight into severe autism disorders and the potential benefit down the road, admittedly far down the road,  for persons with severe autism,   It would be nice if the good professor Robison would wake up some day and realize the harm he is doing to people like my son by his misrepresentations of what autism means,  I am not however holding my breath waiting.  

Saturday, December 06, 2014

SUDEP The Global Conversation Combating The Myth That Seizures Do Not Kill



Many with autism disorders also suffer from epileptic seizures and should be aware of the risk of SUDEP, Sudden Unexpected Death in Epilepsy.  The following is a News Release about SUDEP the global conversation a joint effort of several epilepsy and SUDEP awareness ogranizations in the US, Canada and Australia:


Families, researchers, clinicians and organisations unite to promote a global conversation on sudden death in epilepsy

A global collaboration of charities, researchers and families has created a unique online knowledge resource on sudden deaths in epilepsy. This new, web-based ’Global Conversation’ combats the myth that seizures do not kill.

Sudden Unexpected Death in Epilepsy (SUDEP) is when a person who has epilepsy dies suddenly and unexpectedly, with no other cause of death established. It accounts for the majority of deaths in people with chronic epilepsy. Deaths are also caused by accidents, status epilepticus, and suicide. 

Jane Hanna, one of the editors, who has campaigned for awareness and action on epilepsy deaths since her partner died suddenly in his sleep, aged 27, in 1990 said: “The mortality burden of SUDEP alone is high, second only to stroke amongst all neurological disorders because so many of the sudden deaths are in young people. Most people with epilepsy will live a full and normal life but we need to acknowledge the risks, especially with convulsive and night-time seizures. There are simple measures that can be taken that are known to reduce risk that people may want to know and try.“

The new ‘Global Conversation’ website www.sudepglobalconversation.com combines the latest research by international experts with the powerful accounts of bereaved families making it easily accessible to anyone in the world.

The ‘Global Conversation’ will also be promoted at an exhibition at the American Epilepsy Society annual meeting in Seattle, between 6-8 December, 2014 which will be attended by about 4000 delegates. 

FACTS

For over 100 years, a myth that seizures were not fatal hindered research and action to prevent epilepsy deaths worldwide. The myth was first broken in 1996, when the hard and long journeys of some tenacious families collided with those of pioneering researchers and clinicians from all over the world.

The success of the ‘Global Conversation’ is attributed to a powerful three-way collaboration between SUDEP Action, Epilepsy Australia and Canada’s SUDEP Aware which, together, reach out to research teams from many countries and over 60 experts from around the world, to gather and disseminate the latest information worldwide. It follows SUDEP Action’s (the working name  for Epilepsy Bereaved) campaign during the 1990s, which sparked a partnership between the UK charity and Epilepsy Australia in 2005.

The new, web-based resource follows the success of two books that were produced by the partnership with more than 16,000 hard copies distributed to epilepsy communities around the world at international conferences held in Paris, Rome, Chicago, Montreal, London, Glasgow, Singapore and India, between 2005 and 2014.

The original books online have received more than 300,000 hits. 

Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when someone with epilepsy dies suddenly, often after a seizure that involves a loss of consciousness.

Dr Rosey Panelli, International Research Officer at SUDEP Action, who alongside Tamzin Jeffs, from SUDEP Aware, is promoting the resource at the Annual Conference of the American Epilepsy Society said, “By working together we can push forward the global conversation on SUDEP, which is vital to research and action on SUDEP wherever we are in the world.”

In 2013, SUDEP Action launched a Call for Openness on SUDEP, which is supported by the partnership and by the International League Against Epilepsy (ILAE); the International Bureau for Epilepsy (IBE) and 13 other epilepsy organisations around the world. 


Click here to follow the SUDEP Global Conversation on Facebook

Wednesday, December 03, 2014

So Called Autism Brain Study Excluded 50% of the Autism Spectrum, Those With Intellectual Disability

Credit (or Discredit) Carnegie Mellon University

What's Wrong With This Picture? It Omits 50% of The Autism Spectrum, Those with Intellectual Disability

The picture above, credit (or discredit) to Carnegie Mellon University,  is from a Science Daily review article  Brain representations of social thoughts accurately predict autism diagnosis which reviews an MRI study published in PLOS ONE, December 2014, Identifying Autism from Neural Representations of Social Interactions: Neurocognitive Markers of Autism,  purporting to demonstrate different brain responses to social interaction stimuli in what are described as "autism" brains as compared to control brains of persons without autism. The review article states that it is based on materials supplied by Carnegie Mellon U the institution that conducted the study in which fMRI imaging was used to compare brain reactions of 17 persons with high functioning autism with the brain reactions of 16 control subjects with similar IQ  levels:


As the father of an almost 19 year old low functioning son with severe autism, profound intellectual disability ... and epilepsy I understand why it may not have been feasible to include intellectually disabled autistic adults in an fMRI study.  What the study authors and the journal articles reviewing the study could have done would have been to describe the results as applying only to those with high functioning autism. After all they expressly and intentionally excluded the 50% of the autism spectrum with intellectually disability (WHO, September 2013) and should have claimed that their results applied only to high functioning autism.  Arguably they could have talked about a "high functioning autism brain" but they certainly can not assume their results apply to the low functioning half of the autism world.  

The study authors should have been more accurate .... and honest ... in what they tell the world about their high functioning autism study.  They could have started with the title of their study and called it:

"Identifying HIGH FUNCTIONING Autism from Neural Representations of Social Interactions: Neurocognitive Markers of HIGH FUNCTIONING Autism".

Thursday, November 27, 2014

Dear Elected Representatives: New Brunswick Needs Adult Autism Residential Care and Treatment





Dear Hon. Premier Gallant, Deputy Premier Horsman,Speaker Collins,  Ministers, Party Leaders and Government Advisers:

Re New Brunswick's Lack of Adult Autism Care:

I am sure that you are all grappling with important issues in these weeks following a provincial election. Many issues have generated intense discussion and serious attention from all of our public leaders.  The issue of adult autism care however was not one of those issues. Neither the current governing Liberal Party nor the previously governing Conservative party mentioned autism in their platforms.  The Green Party did propose regional autism group homes which would certainly help those with autism spectrum disorders who suffer from light to moderately severe autism challenges .  Only the NDP recognized the need for an autism center in New Brunswick which could provide treatment and permanent residential care for those, like my son, with severe autism disorder, profound developmental delay (intellectual disability) and epileptic seizures the latter two conditions being commonly associated with severe autism disorders.  

It is difficult to understand why our governing parties and their leadership have refused to take the steps necessary to help adults with autism lived decent, secure lives in New Brunswick. There can be no dispute about the need to address this issue.  In a province where the expressions "community" and "inclusion" are used like currency the approach to adult autism care has been to banish autistic youth and adults to the Regional Psychiatric Hospital in Campbellton on our northern border with Quebec and in some cases out of the province to the Spurwink facility in Maine.  It would be much more humane, and much more in keeping with the values that I believe all New Brunswickers share, to keep our autistic adults closer to home, closer to their families in group homes as suggested by the Green Party and in cases of greatest severity in an autism specific center as indicated in the NDP election platform. 

New Brunswick has achieved international recognition for the steps it has taken in early intervention autism services, most recently in the Summer 2014 Newsletter of the Association for Science in Autism Treatment which interviewed Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell the intellectual architect of NB's autism model.  The newsletter interview mentions the role of parents in advocating for the establishment of the early autism model.  As one of those parents I can also confirm that we advocated with some success for the autism specific training of teacher/education aides and resource teachers to work with autistic students.  The development of the  program for training our educational resources has included a leading world expert in the area Dr. Eric V. Larsson.

 In addition to these resources NB also has the  Fredericton based Stan Cassidy Centre autism team which has been a critical tool in addressing the needs of autistic children and youth with tertiary care level challenges. Fredericton is also the home of the UNB-CEL autism intervention program which developed the autism program that trained most of NB's early intervention workers and school aides.  These successes can provide the base for development of a decent, humane and secure adult autism care system in New Brunswick.  It would save money currently being spent in Maine and live up to the community and inclusion cliches which sound so very good and which do reflect NB values; values which unfortunately have not prevailed in providing for adult autism care in NB.

Paul McDonnell Ph.D. is the person without whom the early and school year autism successes for which this province has been recognized would not have happened. In 2010 in a CBC interview he described the need for a NB adult autism care system and what such a system should look like:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.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 behaviorally trained supervisors and therapists. Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."

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 dymamic 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.

When we, as parents guided by Prof. McDonnell's autism expertise, advocated for early intervention services there were many naysayers who opposed our efforts both within and outside government advisory circles even some in our autism community. They were wrong.  We succeeded and we will continue the fight for decent youth and adult autism care and treatment services in NB.  

We ask all public decision makers on all sides of the legislative aisles to now show the initiative and leadership to get this job done to extend NB's internationally recognized model to provide care for NB's autistic youth and adults.

Respectfully,

Harold L Doherty
Conor's Dad