Proud of Our Conor

Conor looking cool, calm and composed in his grandparents' yard in 

Nova Scotia's Annapolis Valley in November. This morning he showed  just 

as much calm while enduring an early morning blood sample needle.

We were, once again, very proud of our Conor today.  Not for demonstrating some special "autism" skill, not for anything that would be featured in a sensational media story.  We were proud because Conor had blood tests scheduled again at the DECH, the local hospital where Conor spent 2 weeks in hospital last year, including 6 days in the Intensive Care Unit.  He had blood tests scheduled to help establish baseline measurements.  He handled them with as much cool, calm composure as actor Steve McQueen portrayed in "the Great Escape" movie. 

Giving blood samples can be a challenge for many adults.  For Conor the blood tests this morning meant he had to fast for 8 hours before the tests and had to start his day at the local hospital before heading off to the school he loves (Leo Hayes High School, Fredericton).  

He had expected to be in school yesterday, like most Mondays but we had forgotten to check his school schedule until the last minute when we were tipped off by a neighbor.  Monday school had been cancelled because of Teacher Development Days so Conor was very anxious to get back to school today.  Conor handled the early morning hospital visit and the blood sample needle with great calm.  He didn't fuss or fidget, whine or whimper and his Mom and Dad were happy to treat him to 2 Tim Horton bagels for a post hospital visit blood test.  Conor made us proud and we were happy for him ... and relieved ... and we got him back to school ASAP.

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BC Parents Want Evidence-Based Learning Programs and Supports in ALL BC School Districts

There can be hope for children with autism in BC schools    

Parents want evidence‐based learning programs and supports established in all B.C. school districts. 

  

February 17 2014, Surrey, BC:  Recent news stories such as the Seclusion and Restraint report and most recently the story of Susan DeBeck, a Vancouver teacher who claims she was fired for standing up for her students with special needs, shows the education system is in a state of crisis when it comes to providing appropriate supports for students with special needs. 

A local non‐profit autism support group is reaching out to the Minister of Education and district administration across BC to educate them about Applied Behaviour Analysis (ABA), which is the scientifically supported gold standard in teaching and behaviour management.  

ABA is a structured teaching method in which functional skills are broken down and taught one step at a time. That means that children with autism can learn and flourish in all areas including language and communication, play and leisure, self help, life skills and academics. 

Families of children with autism often put ABA teams together to work with their children at home. Dione Costanzo, director of the ABA Support Network says that the results are worth the emotional and financial stress. 

However, once a child with autism enters school in a district that does not have supports for ABA programs, the results achieved at home can be severely compromised, says Costanzo. “All the successes achieved can grind to a halt and often the child regresses.” 

ABA is widely considered to be the most effective, evidence‐based learning approach for children with autism yet Surrey is the only school district in B.C. that has an established system for hiring ABA‐trained teaching aides. 

Costanzo says that the ABA Support Network and parents are on a mission to change this. 

“Children have a right to an education and ABA is the best method to achieve this for children with autism,” says Costanzo. “Implementing these programs, and training and hiring more ABA teaching assistants is the right thing to do, and it's the law.” 

According to the landmark Supreme Court of BC ruling – Hewko v. B.C., 2006 BCSC 1638 ‐ what is required for children with autism to access an education is adherence to their established ABA programs, and the availability of teaching aides that are trained to carry it out.  In most B.C. school districts, ABA programs are not accommodated nor do teaching aides have the proper training to support these programs.

Costanzo says that implementing the ABA programs is a cost‐neutral exercise, it just requires the political will. 

“Getting an appropriate education system for children with autism in place with ABA‐trained teaching aides requires political will and leadership,” she says. “It will not increase costs but it will be utilizing existing funds more effectively.” 

The ABA Support Network is a parent‐led, non‐profit organization whose mission is to improve access to ABA support and services for individuals with autism. 

For information about the ABA Support Network contact Dione Costanzo at dione@abasupportnetwork.com or 604‐817‐1526.  Anyone interested in learning more about autism and ABA in Schools can visit the ABA Support Network website.  

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Grandjean and Landrigan Propose a Global Prevention Strategy To Control the Pandemic of Developmental Neurotoxicity

In Neurobehavioural effects of developmental toxicity, published in the Lancet, Dr Philippe Grandjean MD and Philip J Landrigan MD, propose a global prevention strategy to address the impact of developmental neurotoxicants and the increasing numbers of children with developmental disabilities including autism, ADHD and intellectual disabilities. As the article abstract points out the authors had conducted an earlier systematic review and identified five industrial chemicals as developmental neurotoxicants with six additional developmental intoxicants identified since then:

Neurodevelopmental disabilities, including autism, attention-deficit hyperactivity disorder, dyslexia, and other cognitive impairments, affect millions of children worldwide, and some diagnoses seem to be increasing in frequency. Industrial chemicals that injure the developing brain are among the known causes for this rise in prevalence. In 2006, we did a systematic review and identified five industrial chemicals as developmental neurotoxicants: lead, methylmercury, polychlorinated biphenyls, arsenic, and toluene. Since 2006, epidemiological studies have documented six additional developmental neurotoxicants—manganese, fluoride, chlorpyrifos, dichlorodiphenyltrichloroethane, tetrachloroethylene, and the polybrominated diphenyl ethers. We postulate that even more neurotoxicants remain undiscovered. To control the pandemic of developmental neurotoxicity, we propose a global prevention strategy. Untested chemicals should not be presumed to be safe to brain development, and chemicals in existing use and all new chemicals must therefore be tested for developmental neurotoxicity. To coordinate these efforts and to accelerate translation of science into prevention, we propose the urgent formation of a new international clearinghouse.

In 2013 Landrigan, Lambertini and Birnbaum had proposed A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities. Autism researchers in particular, and the agencies and institutions that fund them, do not seem to have taken seriously the obvious, yes I said obvious, need to explore environmental causes and triggers of autism and neurodevelopmental disabilities and instead appear to be continuing their obsessive need to find genetic elements that "might" be "associated with"  some subsets of autism disorders. The rigid adherence to a non evidence based belief that autism has to be caused by genetic influences, the "it's gotta be genetic" (Teresa Binstock, 1999) paradigm is almost cult like in its persistence in the face of its repeated failure, despite overwhelming funding of genetic based autism research, to find any specific genetic causes of most autism disorders. 

We must act now as Grandjean, Landrigan, Lambertini and Birnbaum have proposed and take seriously the harmful effects of neurotoxicants.  We must begin to develop a rational, serious global strategy to deal with their harmful impact on generations of children to come.  

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See You At 6

Conor went to bed at his usual time tonight.  After about an hour he got up to use the washroom.  As he was heading back to his room he said in his own manner of speech "See you at 6" which is the exact time he gets up every morning.  He then  puts CBC NB Morning news with Terry Seguin on the television.   When Conor says see you at 6 it makes me, and his Mom,  feel very good.  Every day Conor brings us joy ... great joy ... starting at 6 am.

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Life in Conor's "Back Yard", Fredericton's North Riverfront Trail, in 2013

2013 was a challenging year for Conor and Dad health wise. I spent a week in acute care with some respiratory issues and Conor spent 2 weeks in hospital, including a six day stay in the ICU recovering from a life threatening adverse reaction to his seizure medication. Overall though life was good in 2013, including life in Conor's "back yard", Fredericton's North Riverfront Trail. We are just a couple minutes walk from the trail and the St. John River and we enjoyed the trail as often we could.

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Waterhouse & Gillberg: Why Autism Must be Taken Apart

The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. - Waterhouse and Gillberg, Why Autism Must Be Taken Apart

I am not going to offer too much comment on the article by Lynn Waterhouse and Christopher Gillberg itself  which, as the title indicates, argues that autism must be taken apart, at least for research purposes.  I have not yet purchased or read the article. The abstract speaks very clearly and even I, as an ignorant, hysterical, misguided parent of a son WITH severe autism disorder, intellectual disability and epileptic seizures can understand. Waterhouse and Gillberg address themselves to the important needs of studying individual variation and finding specific treatments which are difficult to achieve in the artificially combined "autism spectrum disorder". 

The authors' views are important in and of themselves as autism experts.  They are also important because parents concerns on such subjects as the characterization, the artificial, non evidence based,  unification of autism disorder(s) are automatically dismissed.  The lumping of Aspergers in with autistic disorder under the pervasive developmental category of the DSM-IV created a whole new generation of extremely high functioning, adult diagnosed"autistics" and "free ranging Aspies" who declared that THEY speak for all persons with autism. Michelle Dawson even appeared as an "autistic" before the Supreme Court of Canada in the Auton Case to oppose government funded early ABA intervention for autistic children ... other people's autistic children. 

My son can not speak for himself.  As his father I speak for him and I know him best in doing so.   As a parent I reject absolutely the right, or the knowledge base, of Michelle Dawon, JE Robison, Ari Ne'eman or anyone else to speak on behalf of my son.  To those parents who think that the insights of some high functioning autism celebrities can offer assistance to their children I hope that, in their cases, they are right and I wish them well.   

Personally I hope that the autism research community follows the direction offered by Waterhouse, Gillberg, Insel who wrote about autisms and the lack of validity of the DSM generally, and Giacomo Vivanti who has commented on the need for researchers to look beyond the "pure autism" model of autism research.  Autism heterogeneity ... it is obvious to those who live in the real world of autism disorders ... it should be obvious and should be embraced by the autism research community.

Journal of Autism and Developmental Disorders

January 2014

Why Autism Must be Taken Apart

• Lynn Waterhouse, 
• Christopher Gillberg

Abstract

Although accumulated evidence has demonstrated that autism is found with many varied brain dysfunctions, researchers have tried to find a single brain dysfunction that would provide neurobiological validity for autism. However, unitary models of autism brain dysfunction have not adequately addressed conflicting evidence, and efforts to find a single unifying brain dysfunction have led the field away from research to explore individual variation and micro-subgroups. Autism must be taken apart in order to find neurobiological treatment targets. Three research changes are needed. The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. The noise caused by the thorny brain-symptom inference problem must be reduced. Researchers must explore individual variation in brain measures within autism.

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They Just Don't Give A Damn: 2007 Adult Autism Care and Treatment In New Brunswick Was Abysmal - 2014 Nothing Has Changed, Still Abysmal

Following this comment is a re-posting of a comment I posted on this site 7 years ago in 2007 about the abysmal state of autism youth and adult residential care and treatment in New Brunswick, Canada. 7 years later and nothing has changed. Well, one thing has changed, a very important part of my life has changed.

My son with severe autism and intellectual disability is now 7 years older.... and his Mom and Dad are also 7 years older.

Time marches on. Our autistic children are becoming autistic adults. Our political and government leaders have sat on the sidelines fiddling and twiddling and doing absolutely nothing to help.

 They just don't give a damn.

Autism Youth and Adult Residential Care & Treatment Still Abysmal in New Brunswick

In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick's youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick's vulnerable members.



" Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province. "

....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007
Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B.

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SFARI Continues Misrepresenting High Functioning Autism Only Research As "Autism" Research

The Simon Foundation Autism Research Initiative, SFARI, continues to represent studies involving only high functioning autistic participants to the public as "autism" studies.  In the Children with autism have trouble recalling memories article posted January 3, 2014 SFARI reports as an "autism" study a study which excluded as participants the 50% of those with an Autism Spectrum Disorder who also have an intell5ectual disability (World Health Organization estimate, September 2013):

"Children with autism have trouble recalling memories

Laura Geggel

3 January 2014

Children with autism struggle to remember details of events from their own lives, reports a study published 27 November in Development and Psychopathology. .... The researchers looked at 63 children with autism who have intelligence quotients of 70 or higher, and 63 controls, all aged 8 to 16."

The SFARI article/opinion piece makes no mention of the large numbers of persons with autism SPECTRUM disorder who also have an intellectual disability.  It did not caution members of the public that the study results may apply only to the higher functioning 50% of persons with autism disorder.  It is repeating the misrepresentation of high functioning autism only research as "autism" research as it did just just over a week ago in the article Autism brains are overly connected, studies find. 

Dr. Catherine Lord stated several years ago that autism research was marked by an under representation of subjects with intellectual disabilities:

"Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Autism research has continued to exclude persons with severe to profound intellectual disabilities, a practice questioned by Giacomo Vivanti and his colleagues in a recent article. It is now also widely recognized, at least outside of SFARI organization circles, that "autism" is very heterogeneous in nature. 

Intellectual disability is one of the  most numerically significant and important elements in the heterogeneous autism spectrum. Maybe someone could send a memo to the SFARI commentators. 

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Autism Parents Are Not Unbreakable

  

The allegedly UNBREAKABLE blade of my window ice scraper snapped off under the strain of several days of heavy ice scraping in this December's cold and snowy Canadian winter weather. In fairness to the manufacturers and distributors of the "Unbreakable" ice scraper blade I have used it well past the 3 year limited warranty and it has seen lots of use in previous Canuck winters. People, including parents of severely autistic children, can also break particularly if they face other socio-economic and/or family and health challenges.

Not all parents break in the face of the challenges and fears that haunt many parents of severely autistic children but some do.  All of us know that it is highly unlikely that anyone will provide our autistic children with the love and care, the security and the enjoyment of life, that we have provided our children.  Some of us, not all, but some of us, break under the pressures of those facts.  Some parents rather than leave their children to a world that they know will not care for them kill their own children and take, or attempt to take, their own lives.

The world of "autism" awareness is  cursed by a group of fellow parents that attacks these parents for any effort to treat their own children, who do nothing to help those parents and their children in any meaningful way. They most assuredly will not provide any meaningful assistance to the children whose parents they condemn for trying to end their existence to prevent their adult autistic children from suffering lives on streets, hospital wards, jails and mental health institutions. They do not realize that those parents are broken, just broken, by the realities they and their children face and the children will face after their parents are gone. Yes, they are broken by the realities their children will face after they are gone; NOT by people talking about those realities as some erroneously claim.

These alleged thinking persons who purport to offer guides to autism and who attack all parents who do not drink from their "autism is a gift kool-aid" do nothing because they too are broken, their common sense is broken, their ability to see autism realistically is broken, shattered under the weight of their irrational belief system.

We are all people. Ultimately our bodies outlast our limited time warranties. None of us can  dare  claim we are unbreakable.  The alleged thinking persons would do well to remember that reality as 2013 slips away and their own children age and move closer to their own very uncertain futures.    

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Autism Reality Check: Wandering and Tragedy

Some promote the view that autism disorders are "gifts" if only society could understand, change its ways and accept the gifts. The autism as a gift view, is irrational nonsense. It thrives by simply ignoring the evidence of challenges presented by autism disorders including those like wandering or elopement which sometimes lead to tragic consequences.

Like many with autism disorders my son  once left our home unnoticed - he slipped out of the house while I was occupied on a business call. When the call ended and I couldn't find him I called 911 and was able to recover him safe and sound from a local convenience store where a good Frederictonian had taken him after stopping his truck on the busy road to take him to safety. We had a behavior analyst work with him to teach him not to leave home unattended and we increased our attention to his whereabouts from intense to unrelenting,  making sure we know at all times, every minute,  every second of the day, where he is.

Wandering, some times with tragic results, is an autism reality that is often reported in the news but not always acknowledged by those who promote the nonsense that autism is a gift not a disorder or who downplay the serious realities presented by autism disorders:

American Academy of Pediatrics: Study Finds Nearly Half of Children with Autism Wander Off , For Release: Monday, October 8, 2012 

"Anecdotally, parents of children with autism spectrum disorders (ASD) report that their children often place themselves in danger by wandering off, or “eloping.” For the first time, a study has determined the frequency of these elopements in children with ASD and the impact on children and families. 

The study, “Occurrence and Family Impact of Elopement in Children with Autism Spectrum Disorders,” published in the November 2012 issue of Pediatrics (published online Oct. 8) was funded by several autism advocacy organizations and led and conducted by the Interactive Autism Network at Kennedy Krieger Institute. 

Researchers surveyed 1,367 families with children between the ages of 4 and 17 who had been diagnosed with ASD. Nearly half – 598, or 49 percent – of the families reported that their child had attempted to elope at least once after age 4. Of those, 316 children went missing long enough to cause concern. 

Greater autism severity was associated with increased elopement risk. Children eloped most commonly from their home, a store, classroom or school. Nearly half of parents said their child’s elopement was focused on an intent to go somewhere or do something, versus being confused or lost. Close calls with calamities like traffic injury or drowning are frequent, with police called in more than a third of cases. 

Of parents whose children had eloped, 43 percent said the issue had prevented family members from getting a good night’s sleep, and 62 percent said their concerns had prevented family from attending or enjoying activities outside the home. For 56 percent of parents, elopement was one of the most stressful behaviors they had to cope with as caregivers of a child with ASD, and half said they received no guidance from anyone on preventing or addressing this behavior. 

Until more research can be conducted to develop interventions to address elopement, study authors hope the results of the study will inform families, doctors, educators and first responders who grapple with the consequences of elopement."

Note -The AAP news release above does not mention the study finding, as published in the Pediatrics study report linked above that:

"Elopement may be a significant contributor to mortality in individuals with ASD, which has been reported to be nearly twice that of the general population,³ especially mortality owing to accidents, such as suffocation and drowning.⁴Despite reports of injuries, fatalities, and increased family burden, little research on elopement behavior in individuals with ASD has been conducted.^5"

Many are aware of the autistic Queens, NY youth, Avonte Oquendo,  who slipped past a  school security desk on October 4, 2013 and has been missing ever since.  Some other recent wandering events, some with tragic conclusions:

Australia, Telegraph News, December 28, 2013: Sugar cane community of Chatsworth Island in mourning over the tragic drowning death of Connor Elliott-Graham, 4:

"DEVASTATED relatives of the four-year-old "cheeky angel" who drowned in the Clarence River were still struggling to articulate their grief yesterday. Three volunteer divers found the body of Connor Elliott-Graham, still in his Teenage Mutant Ninja Turtle pyjamas, on Boxing Day during a massive air and land search of the tiny sugar cane community of Chatsworth Island, 60km north of Grafton. It's believed that while parents David and Caity slept in the early hours of December 26, their son, who suffers from autism, climbed out of his bed and wandered across the road to the vast river in the state's north."

Missing autistic Bronx boy found in New York’s Time Square December 3, 2013 by Autism Daily Newscast, News In Brief New York, USA: 

A 12 year old boy described by the department of education as a high functioning autistic has been found wandering around Times Square,Manhattan New York after being reported missing after walking out of P.S. 188 on Cauldwell Avenue at around 10:30 a.m. Monday December 2. He was found after safely walking from Caldwell avenue to Times square, by the truancy task force, who were called to the scene and arrived at the school six minutes after the boy was reported missing.

NJ.com, December 9, 2013 - Missing autistic teenager found in Vineland

MILLVILLE — A missing autistic teenager was found in Vineland, according to authorities, after wandering from his Sunset Drive home. Robert Francesconi, 15, left his Millville residence Monday around 8:30 a.m., police said. Members of the Vineland Fire Department later found him near the intersection of Chestnut Avenue and Southeast Boulevard around 3 p.m. According to his parents, he is known to wander to high-traffic areas by foot in Millville and Vineland — visiting a different destination each time he has gone missing. 

Missing autistic boy found dead- NZ, Manawatu-Standard,  November 23, 2013

A missing 11-year-old autistic boy has been found dead in a swimming pool near his home, police have said. Police had been searching since about 3pm for William Archer who was last seen at a family address in North Street in the afternoon. Inspector Mike Coleman from central communications said the boy was dead when he was found about 11:15pm last night. Earlier police had said a lot of people had been looking for the boy since he was reported missing, including search and rescue staff, local police and his family.

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For Conor Control Can Make A Difference: HERSHEY'S KISSES Christmas Bells, Autism and Sensory Challenges

Conor would always react negatively when he heard the Hershey's Kisses Christmas bells  commercial. The sound of the bells, even the sight of the bells, almost invariably agitated him. Recently I recorded a couple of Frosty the Snowman shows for Conor using our television DVR system. The Hershey's Kisses Christmas bells commercial was included as one of the commercials during the broadcast of the Frosty episodes.  Today I grabbed a coffee from the kitchen to go back upstairs to do some work on my laptop and realized Conor was playing, and replaying several times, the Hershey's Kisses Christmas bells commercial using the television remote control. He actually seemed to be enjoying the sound of the bell music. Sure he was desensitizing but more than that, he seem to actually enjoy the bell music.  He appeared to have learned to enjoy the commercial's bell sounds because he exercised control, literally, over the playing of the commercial, its sounds and images.  

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Dad Scores A Goal ... With A Big Assist From Tim Hortons, Eh!

I felt like a bit of a superstar on the Conor page this morning.  Yesterday we took Conor to see "Frozen" in the mall theater and we got a few things done but tried to avoid going out on the roads with some of the frantic Christmas driving going on. We overlooked a few basics in restocking the fridge.  Conor gets up early at 6 am sharp EVERY day without fail so there was no time to run out for more groceries. Our neighborhood Tim Hortons was open though and it is close enough for a pleasant early morning walk 

It may seem small and inconsequential to many but with Conor's autism challenges nothing is taken for granted. This morning as he made smacking noises while clearly enjoying his bagel I was a very happy Dad. I had scored a big goal with a big assist from Tim Hortons.

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Ontario Children Waiting Too Long For Access To Autism Programs - Ontario Auditor General Report 2013

News Release

For Immediate Release                                                             December 10, 2013

CHILDREN WAITING TOO LONG FOR ACCESS TO AUTISM PROGRAMS, AUDITOR GENERAL SAYS

(TORONTO) Screening for autism is often occurring late, and children who are diagnosed then face long waits for access to some of the programs that could help them, Auditor General Bonnie Lysyk says in her 2013 Annual Report. In addition, certain services are not being directed to those that may benefit the most.

“The Ministry of Children and Youth Services has quadrupled autism funding over the last decade, but there are still more children with autism waiting for government-funded services than there are chil­dren receiving them,” Lysyk said today following the release of the Report.

Intensive Behaviour Intervention (IBI) is the Ministry’s primary autism program, and the Ministry has also introduced several other programs, including applied behavioural analysis (ABA)-based services, and respite programs.

The audit found that children with autism are diagnosed in Ontario at a median age of a little over 3 years, later than the screening period of 18 to 24 months old endorsed by the Canadian Pediatric Society for children with risk factors. Then, due to long wait lists, Ontario children do not typically start IBI until almost age 7. Research has shown that children who start IBI before age 4 have better outcomes than those who start later. In addition, although scientific research shows that children with milder forms of autism have better outcomes with IBI, the program is currently available only to chil­dren assessed with more severe autism.

Following are some of the Auditor General’s other significant findings:

•    ABA-based services, the only type of funded therapy available to children with mild to moderate forms of autism, allow a child to work on only one goal at a time and may not be sufficient for those who have many behavioural problems or goals to achieve. After achieving one goal, the child returns to the bottom of the wait list.

•    The lead service agencies decide how to allocate Ministry funding for IBI between two service-delivery options: direct service, where the child receives service directly from a service provider at no cost; or direct funding, where the family gets funds from the lead agency to purchase private services. Wait times for IBI services can differ significantly between the two options and among regions. In one region in 2012, the average wait for IBI services under direct funding was five months longer than under direct service. In another region, the situation was reversed.  

•    Children discharged from IBI services in 2012/2013 under the direct-funding option received on average almost one year more of services than those under the direct-service option (35 months versus 25 months). As well, children receiving IBI under the direct-service option often received fewer hours of therapy than they were approved for.

•    Children transitioning to high school and beyond receive minimal support.

•    Since 2006, the Ministry has reimbursed up to 60 individuals a total of $21 million for the cost of IBI therapy and other expenses outside of the regular service system. Per child, this represents more than double the value of services that a child in the regular service system typically receives.

For more information, please contact:

Bonnie Lysyk

Auditor General

(416) 327-1326

For more information and to view the full 2013 Annual Report, please visit 

www.auditor.on.ca

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Oh Oh!! Authors of Report Concluding Aluminum Vaccine Adjuvants Are Contributing To Increasing Incidence of Autism Disorders Better DUCK!

Authors of a report published in the Comprehensive Guide to Autism

2014, pp 1585-1609 better duck fast! The article abstract reviews the highly toxic nature of aluminum and conclude that research data suggest that vaccines containing aluminum adjuvants may be a contributing etiological factor in the increasing incidence of autism.  Such an assertion is forbidden by health policy authorities if not by science:

"Abstract 

Impaired brain function, excessive inflammation, and autoimmune manifestations are common in autism. Aluminum (Al), the most commonly used vaccine adjuvant, is a demonstrated neurotoxin and a strong immune stimulator. Hence, adjuvant Al has the necessary properties to induce neuroimmune disorders. Because peripheral immune stimuli in the postnatal period can compromise brain development and cause permanent neurological impairments, the possibility that such outcomes could also occur with administration of Al vaccine adjuvants needs to be considered. In regard to the risk of adjuvant toxicity in children, the following should be noted: (i) children should not be viewed as “small adults” as their unique physiology makes them more vulnerable to toxic insults; (ii) in adult humans Al adjuvants can cause a variety of serious autoimmune and inflammatory conditions including those affecting the brain, yet children are routinely exposed to much higher amounts of Al from vaccines than adults; (iii) compelling evidence has underscored the tight connection between the development of the immune system and that of the brain. Thus, it appears plausible that disruptions of critical events in immune development may also play a role in the establishment of neurobehavioral disorders; (iv) the same immune system components that play key roles in brain development appear to be targeted for impairment by Al adjuvants. In summary, research data suggests that vaccines containing Al may be a contributing etiological factor in the increasing incidence of autism."

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Detached Children With Autism Theory Faces Serious Challenge

Emotional Reactions of children with Autism, Ms Heather Nuske 

Olga Tennsion Autism Research Centre, Latrobe University

For years the autism professional community accepted the non evidence based speculation that autism disorders were caused by detached, cold mothers.  The professions' embrace of this fantasy caused serious harm to many families.  The other side of the coin is that persons with autism disorders are also cold, detached, do not show typical emotional responses.  The cold autistic persons theory has endured but is now under serious challenge from some of the innovative, fresh thinkers at the Latrobe University's Olga Tennison Autism Research Center.

Our family's personal (anecdotal), direct observation  evidence, if such evidence were not strictly verboten in autism research circles, would demolish the cold kids with autism speculation. Through my autism advocacy in New Brunswick I have met other children with autism disorders, from both ends of the autism spectrum, who have displayed emotional responses once they got to know me, including some wonderful smiles, laughs and humor. Many posts on my Facing Autism in New Brunswick blog and the borders on my blog contain pictures of our wonderful, severely autistic son and his warm embraces and brilliant smile. As direct experience evidence from a family  such evidence is given no weight in autism research circles (as opposed to the serious consideration given by autism professionals to the views of persons with very high functioning autism).

Conor's Mom said he was anxious this past February when I was in the 

local Acute Care Unit for a week with respiratory problems.  In the 

picture above Conor, upon visiting me at the ACU, displays emotional 

response, and support, for his old Dad.

Conor displaying emotional responses to his Mom.

Now comes news from the Olga Tennison Autism Research Centre at Latrobe University in Australia that the detached, cold person with autism theory/speculation is  under serious challenge by researchers at the OTARC.  In essence Heather Nuske and her colleagues at the OTARC are exploring the idea that persons with autism probably (more research is necessary) display typical emotional reactions and attachments to caregivers and  persons with whom they are familiar while showing no, or very little, emotion or attachment to persons with whom they are not familiar.

Personally I am happy to see Ms Nuske and the OTARC challenging the cold autistic kids speculation and believe that their idea is entirely consistent with our experience with our wonderful son Conor. 

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