Friday, April 24, 2015

Autism Society New Brunswick Meeting May 23 UNB Fredericton Tilley Hall Room 303





UNB Fredericton,  South Side Fredericton 


Tilley Hall, RH Side Looking Down Hill From 
Harriet Irving LibraryJust Pass Singer Hall


Tilley Hall Room 303



Saturday May 23 Time To Be Announced



As indicated above the Autism Society New Brunswick will meet Saturday May 23, 2015 at Room 303, Tilley Hall, UNB Fredericton at a time to be announced.  Agenda will be available prior to the meeting.  Anyone interested in autism services in New Brunswick is invited to attend. Invitations will be sent to political leaders on a non partisan basis.  If you wish to have your MLA attend feel free to extend to her or him an invitation.

Many thanks to Paul McDonnell for booking this location for our use, just one of the many contributions he has made to helping persons with autism and their families in NB.

Check this page for updates from time to time.

Tuesday, April 21, 2015

Autism-Epilepsy Connection Explored in Four Studies


The newsletter that follows reports on 4 studies of the autism-epilepsy connection.   It is a connection which our own son Conor has lived with and which has presented serious challenges.

Conor received an autism disorder diagnosis the day after his 2nd birthday 17 years ago.  We have been focused on his autism ever since but we were not initially aware that because of his autism disorder he might also be at greater risk of epilepsy as set out in the following report reviewing 4 studies of the autism-epilepsy connecction.  

We began to suspect seizure activity when Conor entered adolescence.  He seemed to be "absent" and would look away staring at nothing at times. Later he started showing periods of hitting his head as though he was in pain.  Eventually he started suffering tonic clonic (grand mal) seizures, collapsing and convulsing.  

In the picture above Conor is shown during his 6 day stay in the  Intensive Care Unit of the Chalmers Hospital in Fredericton treating what was determined after testing to be  rhabdomyolysis,  a serious reaction to Lamotrogine, his seizure medication at that time.

Rhabdomyolysis is 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

Autism-Epilepsy Connection Explored in Four Studies

West Hartford, Conn., April 20, 2015 – Epilepsy affects nearly 30 percent of all people with autism spectrum disorder (ASD), a neurobehavioral condition marked by impaired social and language development. Conversely, many patients with epilepsy display ASD-like behavior. Recent studies suggest that epileptic seizures impair the neural pathways needed for socialization, but the details of this process remain unclear.


Four studies presented at the American Epilepsy Society’s recent Annual Meeting delve deeper into this relationship, revealing biological mechanisms and clinical findings that could help advance treatments for patients with both disorders.

Jennifer Avallone, DO, and colleagues retrospectively examined the video EEG findings and clinical records of 53 children and adults diagnosed with both epilepsy and ASD. The authors uncovered abnormal video EEG findings in 50 of the 53 records studied. Clinical and EEG records indicated that 40% of the patients had focal epilepsy, 30% had generalized epilepsy, 25% had both focal and generalized epilepsy and 5% had an unclear diagnosis.  During the period between seizures, subclinical epileptiform activity occurred in 85% of the studies, while non-epileptic abnormalities in EEG activity were observed in 40% of the studies.

“The presence of epilepsy is an important finding in patients with autism spectrum disorder,” says Dr. Avallone. “Exploring the variations in EEG activity between and during seizures, and how those variations relate to genetic and behavioral findings in people with ASD, could greatly assist with the management of both conditions.”

In a second study, Andrey Mazarati, MD, PhD, and colleagues investigate the relationship between autism-like behavior and epilepsy associated with maternal infection.  Previous animal studies have potentially linked epilepsy and autism by showing that immune activation in a pregnant mouse can trigger two immune molecules – interleukin-6 (IL-6) and interleukin-1ß (IL-1ß) – in the offspring, thereby exacerbating the faulty signal transmission through an area of the brain known as the hippocampus.

The authors explored whether epilepsy and ASD might occur concurrently in another established mouse model of epilepsy known as the intrahippocampal kainic acid model. Surprisingly, the authors report fewer seizures in mouse offspring that displayed autism-like behavior and had IL-6 activation. At the same time, more severe epilepsy was observed in mouse offspring with the over-production of both IL-6 and IL-1ß.  According to the authors, the mouse model reveals evidence for a rivalry, rather than cooperation, between autism- and epilepsy-like features in certain circumstances.

“These observations suggest that the processes contributing to the autism-epilepsy connection are highly complex,” says Dr. Mazarati. “Studies exploring the relationship between autism and epilepsy must take this complexity into account when establishing a proper experimental design.”

A third study by Mirret El-Hagrassy, MD, and colleagues explore the neurological, physical, and behavioral characteristics of patients diagnosed with ASD, epilepsy and a rare condition known as electrical status epilepticus of slow wave sleep (ESES) that develops in childhood. ESES is marked by neurological/psychological impairment, motor delays, epilepsy, and finding electrical status epilepticus during slow wave sleep on EEG.

The authors analyzed retrospective data from forty-four patients with ESES who underwent video EEG monitoring and were treated with high doses of diazepam during the night to regulate brain activity. Out of those forty-four patients, six had ASD. All ASD patients had communication difficulties, and seemed more likely than the ESES patients without ASD to have language and reading learning disabilities. Four of the ASD patients had normal brain MRIs, but most were done years earlier. EEG seemed to show some differences in spike locations in the ASD group compared to the group without ASD, the authors report. Overall, both groups largely improved after diazepam with regard to seizure control and neurocognitive status, but comparison between the two groups was difficult.

“ASD can be associated with focal epilepsy, ESES, and multiple neurocognitive comorbidities. Spike locations during ESES in patients with ASD appear to vary on initial analysis from those with ESES but no ASD. Comorbidities also vary between the 2 groups. These differences are difficult to interpret with such small numbers, but may potentially render clues to cortical areas involved in different comorbidities of ASD and ESES, even when imaging is normal. Spike suppression may have implications beyond seizure control,” notes Dr. El-Hagrassy. “Further multicenter prospective studies are needed.”

In a fourth study, Megan Leigh Lewis, PhD Candidate supervised by Dr. Quentin J. Pittman at the Hotchkiss Brain Institute in Calgary, and colleagues unveiled a new mouse model of ASD and epilepsy to explore the underlying processes that contribute to the ASD-epilepsy relationship. To create the animal model, the authors inbred mice that display three behavioral characteristics of ASD – impaired social interactions, unusual vocalizations and repetitive stereotyped behaviors – and provoked an immune response in the newborn mice that has been shown to boost brain excitability in other rodents.

The mice were later examined for their susceptibility to seizures, their brain activity on EEG, and key ASD-like behaviors. The study confirmed that a single immune challenge in infancy increases brain excitability, and enhances seizure susceptibility and is associated with aberrant EEG activity in adult mice. The study further found that ASD-like behaviors are maintained in adult mice that received the early immune challenge, but not in unchallenged control mice.“This innovative mouse model could provide a useful tool to discover the molecular processes responsible for the co-existence of ASD and epilepsy,” says Lewis.

About Epilepsy
The epilepsies affect 50 million people worldwide, including three million in the United States. The disorder can have a single specific, well-defined cause, such as a head injury, or manifest as a syndrome with a complex of symptoms. It is the third most common neurological disorder after Alzheimer’s disease and stroke.

About the American Epilepsy Society
The American Epilepsy Society is a medical and scientific society whose members are professionals from private practice, academia and government engaged in both research and clinical care for people with epilepsy. For more than 75 years, AES has been unlocking the potential of the clinical and research community by creating a dynamic global forum where professionals can share, learn and grow. AES champions the use of sound science and clinical care through the exchange of knowledge, by providing education and by furthering the advancement of the profession. For additional information, visit aesnet.org.

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Information Contacts:
Natalie Judd, Big Voice Communication, 203-389-5223natalie@bigvoicecomm.com
Ellen Cupo, Big Voice Communication, 203-389-5223ellen@bigvoicecomm.com

Sunday, April 19, 2015

Why Do New Brunswick Governments Ignore Needs of Severely Autistic Adults? When Will They Ever Learn?


The Restigouche Psychiatric Hospital on NB's Northern Border Far From Most NB Families is a 
Massive Institution and the Present and Future Home for Severely Autistic Adults in 
the Inclusive Community of New Brunswick. 


My Son Conor Is A Great Joy But His Severe 
Autism Presents Many Challenges, As Things Stand 
He MAY Spend His Adult Life AD (After Dad) 
in the Restigouche Psychiatric Hospital

Autism spectrum disorders and the challenges they present to those who suffer from them continue on into adulthood in many cases, particularly for those who did not receive the benefit of early intervention.   So why should New Brunswick's only tertiary level health care service, that offered by the Stan Cassidy autism team in Fredericton, be arbitrarily cut off at age 16. Why has New Brunswick not developed an adult autism treatment and permanent residential care facility for the most severely autistic who will either be sent to Spurwink Maine or as is more likely as the screws tighten to the Regional Psychiatric Hospital in Campbellton far from the bulk of the population in Canada's most community and inclusion obsessed province?


Who we help

We have a provincial mandate and therefore serve the entire province of New Brunswick. Service to our clients is provided in their language of choice (French or English). We see school-aged children until their 16th birthday."
It is a matter of record that the NB government was once working on an adult autism residential care and treatment facility as an alternative to the very expensive costs of sending adults to the Spurwink facility in Maine at $300,000 per year per person or sendign them to lives spent far from family in a psychiatric hospital with no autism expertise in Campbellton. In an article by Mary Moszynski published on page A4 of the Times & Transript on July 21, 2006 it was reported that:
"The province doesn't have a facility specifically for New Brunswickers who suffer from autism and can no longer remain at home. However the Department of Family and Community Services has been examining the costs of building such a facility. Last year Tony Huntjens, former family and community services minister, said publicly he was working on a proposal to open a residence where those with autism could receive specialized care."

The adult autism facility that Minister Huntjens was planning never materialized. The Minister himself stepped down not long thereafter  though.   The concept of a facility specific to autism has been under attack ever since then by various individuals and groups claiming to have a community focus who conveniently ignore the severely autistic adults who have been banished from their communities because the communities lacked the ability to care for and treat those with severe autism disorders. 

Although successive  Cabinet Ministers and NB governments have continued to keep severely autistic adults in exile in inappropriate settings former Minister Huntjens has remained true to his principles by sharing his experience with concerned parents of severely autistic adults including his comment to me in relation to my commentary on the need for an autism specific facility to provide residential care and treatment for severely autistic NB adults:

"I totally agree with you Harold. When I was minister of FCS we had to use facilities in the State of Maine at an annual cost of $300,000 per person. I had planned on pursuing the initiative you speak of using the State of Maine model...this would keep the autistic person closer to home in familiar surroundings, it would create employment so that the $600,000 now spent in Maine could be used to pay for these services at home. As you know, my efforts were derailed and I had to resign as minister. These financial facts I speak of need to be brought to the attention of the present government...perhaps they will see the light.

Keep up the fight and I personally wish you the very best of luck.

Tony Huntjens, January 2012

" totally agree...It is long overdue...could save the province a lot of money, employ NBers, and have the people close at home and family. When will they ever learn?"

Antoon Jozef Huntjens, August 24, 2014

Mr Huntjens comments on August 24, 2014 were similar to those of former NB civil servant Wendy McLeod MacKnight:

"Harold - it is an embarrassment to me that you and I started discussing this back in 2003 after the preschool program started and no one has yet addressed it. We came close about 5 or 6 years ago, but got shut down. it is more than overdue..."

Wendy McLeod MacKnight, August 24, 2014

Unfortunately for my severely autistic, now 19 year old son, I still can not answer the question posed by Tony Huntjens.  My biggest fear, which I have tried not to surrender to,  is that NB governments, political and bureaucratic. might simply be too stubborn, uncaring and hypocritical to admit the realities of severely autistic adults as long as they are kept out of sight in the Restigouche Regional Psychiatric Hospital or out of the province. 

As I age though, as my son ages, as time runs out the question that continues to haunt me  is "when will they ever learn?" 

My greatest fear is that they never will. 

Nice To See Autistic Twin Sons of Toronto Family Receiving Autism Treatment In New Brunswick


PHOTO BY MARC GRANDMAISON / THE CANADIAN PRESS

The headline of the Toronto Star article Toronto family chases autism treatment across the country  doesn't mention the province to which the family in the Toronto Star article seeking early autism treatment for their autistic twin sons moved  - New Brunswick. Nor does the article itself delve into how the province usually mentioned as a financial disaster could have become a Canadian leader in early autism treatment as it was described by David Celiberti, Ph.D., BCBA-D, President of  the Association for Science in Autism Treatment in an October 23, 2010 commentary "ASAT Responds to Canadian CBC's N.B. Can Be a Leader in Autism Services" and again in his  interview with Dr. Paul McDonnell in the 2014 ASAT summer newsletter.  The essence of the Association of Science in Autism Treatment's commentary was that NB was already a leader; one whose autism service model was worthy of consideration by other Canadian jurisdictions. 

So how ... and why .... did New Brunswick develop an early intervention model worthy of consideration by other Canadian provinces seeking to provide early autism treatment to the autistic children of their province?  Without going over it again in detail intense parent advocacy focused specifically on request for  an early autism intervention prompted the NB government of day to to put out tenders for agencies to provide early autism treatment.  That call was answered successfully by Paul McDonnell and UNB-CEL. who developed the UNB-CEL autism training program in both French and English.

We have previously heard unconfirmed rumors of families in national organizations seeking relocation to NB so their autistic children could receive treatment. It felt good for this autism parent who was part of that very focused, committed parent advocacy team that prompted development of the made in NB autism program  to see the be benefits of the program being received by the children of the Toronto family in the Toronto Star article. 

Saturday, April 18, 2015

May Institute National Autism Center Review: Applied Behavior Analysis The One Intervention Determined To Be Effective For Adults With Autism



National Autism Center Completes Most Comprehensive Review of Autism Interventions Identifies Established Interventions for Children, Adolescents, and Adults on the Autism Spectrum 
Randolph, Mass. – Researchers at the National Autism Center at May Institute today released the results of the largest systematic review to date of interventions for autism spectrum disorder (ASD). Their findings identify 14 “Established Interventions” for children and adolescents that have the most research support, produce beneficial outcomes, and are known to be effective, and one Established Intervention for adults on the autism spectrum.
“The National Standards Project is an ongoing effort designed to give educators, families, practitioners, and organizations the information and resources they need to make informed choices about effective interventions that will offer individuals with ASD the greatest hope for their futures,” said Hanna C. Rue, Ph.D., BCBA-D. Dr. Rue serves as Executive Director of the National Autism Center, May Institute’s Center for the Promotion of Evidence-based Practice.
Leading the way in the field of adult intervention, this latest iteration of the National Standards Project also included an analysis of intervention outcome studies for adults (ages 22 and older) that have never been systematically evaluated before now.
The one intervention determined to be effective for adults, and nearly all of those classified as effective for children and adolescents, are behaviorally based, meaning they are grounded in the methodologies of applied behavior analysis, behavioral psychology, and positive behavior support.

In spite of the burgeoning population of adults with ASD, there is little empirical research to guide intervention for this population. The overwhelming majority of research studies to date focus on interventions for children and adolescents.
“Because of the dearth of research on adult interventions, only 27 studies focused on adults with ASD met our inclusion criteria,” said Dr. Rue. “Although we are pleased to be able to identify one Established Intervention, these results draw attention to the dire need for further research in this area.
“Children with autism grow up to be adults with autism; they will require effective interventions throughout their lifetimes to ensure they reach and maintain their maximum potential,” Dr. Rue added.
The National Standards Project is the only systematic review of ASD interventions for individuals across the lifespan based on behavioral and educational studies. Through a rigorous process utilizing tools and strategies designed and vetted by a team of national experts, the Project’s goal was to analyze the research that was conducted and the impact on participants, and to determine the strength and scientific rigor of that research. The results will help to inform decisions about interventions, or treatments, for ASD.
The report released today, Findings and Conclusions: National Standards Project, Phase 2, updated the Center’s first summary of the ASD intervention literature for children and youth under age 22. Phase 1 of the project was published in 2009. The combined the results of Phases 1 and 2 have produced the largest compilation of studies ever reviewed.
Nationally recognized experts in autism, as well as other leaders representing diverse fields of study, were involved in both phases of the National Standards Project and guided the process of evaluation. Dozens of article reviewers analyzed 1,165 studies related to interventions for ASD throughout both phases of the project. The interventions were subsequently categorized as 1) Established, and producing beneficial outcomes known to be effective; 2) Emerging, with some evidence of effectiveness, but still requiring more research, and 3) Unestablished, and having little or no evidence of effectiveness.
This new report identifies three interventions for individuals under age 22 that were identified as Emerging in 2009 and have now garnered enough scientific evidence of effectiveness to be moved into the Established category.
During the past five years, the National Autism Center has disseminated the results of the first phase of the National Standards Project to hundreds of thousands of individuals throughout the country and around the world through the publication of the National Standards Report.

The National Autism Center is May Institute’s Center for the Promotion of Evidence-based Practice. It is a nonprofit organization dedicated to serving children and adolescents with autism spectrum disorder (ASD) by providing reliable information, promoting best practices, and offering comprehensive resources for families, practitioners, and communities. For more information about the National Autism Center, please visit www.nationalautismcenter.org.


May Institute is an award-winning nonprofit organization with 60 years of experience in serving children and adults with autism spectrum disorder and other developmental disabilities, brain injury, mental illness, and behavioral health needs. The organization provides educational, rehabilitative, and behavioral healthcare services to individuals, as well as training and consultation services to professionals, organizations, and public school systems. At more than 160 service locations across the country, highly trained staff work to create new and more effective ways to meet the special needs of individuals and families across the lifespan. Learn more at www.mayinstitute.org.