Parent Observation Based Study: Children With Autism Disorders as Early as 12 Months Display Highly Elevated Range of Repetitive Behaviors

Some study results that don't surprise me given the use of parent observation, the most, and perhaps only,  reliable source of information concerning autism symptoms during children's infancy:

Longitudinal patterns of repetitive behavior in toddlers with autism

Journal of Child Psychology and Psychiatry, 

"Conclusions

"These findings suggest that as early as 12 months of age, a broad range of repetitive behaviors are highly elevated in children who go on to develop ASD. While some degree of repetitive behavior is elemental to typical early development, the extent of these behaviors among children who develop ASD appears highly atypical."

Jason J. Wolff1,*, Kelly N. Botteron3, Stephen R. Dager4, Jed T. Elison5, Annette M. Estes6, Hongbin Gu2, Heather C. Hazlett1,2, Juhi Pandey7, Sarah J. Paterson7, Robert T. Schultz7, Lonnie Zwaigenbaum8, Joseph Piven1,2The IBIS Network†

Although our son Conor's autism diagnosis was received the day after his 2nd birthday the symptoms which prompted us to seek medical attention for our severely autistic son, lack of language development beyond some strange words (not mommy or daddy), strange sensory oriented behaviors and repetitive behaviors, were obvious by his 1st birthday. Unlike some prominent adult diagnosed autistics no one suggested he was autistic before we sought medical attention and we did not come to that conclusion ourselves. We had never heard of autism before Conor's diagnosis was presented to us and there were few autism specific services available through our public health or education services at that time.       

While Conor's autism diagnosis was delivered at 2 plus 1 day the symptoms were apparent by 1 year of age. This report, using parent observation is entirely consistent with my son's development and our observations.  I am happy to see a study which reflects the real life observations of our son's development and which I am quite sure is consistent with that of many severely autistic children. 

I sincerely applaud, and give 2 thumbs up to, the research team of Wolff et al for conducting some  autism research based on parent observation.

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16 Years After Conor's Autism Diagnosis: Lots of Conor Joy But No Progress in Autism Research

Yesterday was Conor's 18th birthday. Today is exactly 16 years after his autism diagnosis, received the day after his second birthday and after several months of testing and observation. Conor, now a young man, is still the happy boy that brings joy to his Mom and Dad, along with many serious challenges, challenges that restrict his life. Here in New Brunswick, Canada, some progress was made by a commitment to evidence based intervention by a determined parent advocacy movement. In the big picture though there has been no meaningful progress and in fact there has been very substantial regression.

The regression has occurred with the creation of the Autism Spectrum Disorder diagnostic category in the DSM-5, unifying into one disorder several categories at a time when the incredible variety and heterogeneity of the autism disorders, the "autisms" as US NIMH Director Dr. Tom Insel has described these conditions should be crystal clear.  At the same time the masterminds who crafted the new DSM-5 ASD still describe groups of disorders such as "autism" intellectual disability and epileptic seizures as co-morbid conditions implying that they are separate conditions appearing together coincidentally when in fact their frequent appearance together clearly indicates they are part of one disorder, condition or subset of symptoms which most likely share common causal factors.  

Whatever way one looks at it autism research will be set back by creating a different condition to compare to earlier versions. The autism research community really has few successes, since Lovaas and those who confirmed and expanded on his work, and few causal factors have been identified with certainty.  Now the autism research community that has failed so miserably will face an additional hurdle ... comparing apples to oranges ... DSM-5 autism cases to DSM-IV cases and adjusting their results to accommodate the differences.  Good luck with that.

DSM-IV or DSM-5 the autism research community still clings tenaciously to the belief that with respect to the autisms "it's gotta be genetic".  While lip service is paid to the concept that autism results from the interaction of genetic and environmental factors research dollars still flow overwhelmingly to genetic based autism research.  Calls for an environmental autism research strategy by respected authorities  like Grandjean, Landrigan and Birnbaum are largely ignored.

Convenience and the false belief in a "pure" autism also continue to strip autism research of any value.  Autism research subjects tend to be high functioning autistic persons who are easier to work with in conducting studies. The exclusion of more challenging lower functioning participants from autism studies is justified by the non evidence based belief in a pure autism.

The truth is autism research has produced nothing of significant value in the 16 years since my son's autism diagnosis 16 years ago today.  The autism research community failed persons with autism and their parents and families when they twiddled their thumbs while the cold mothers fantasy was allowed to prevail and cause harm to all touched by autism. Since then there has been many dollars spent on autism research with precious few results to show.

I am being realistic about the state of autism research over the last 16 years just as I am being realistic when I describe the great joy that our severely autistic son Conor has added to our lives.  To Conor I say thanks Buddy.  To the autism research community I say get your acts together, start producing some results. 

Conor at age 2 loved his cake and icing and that is still true today.  He was 

and remains a happy, joyful blessing in our lives despite the many 

serious challenges that his autism disorder and "co-morbid"

 intellectual disability and epileptic seizures present. 

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A Humble Father's Simple Autism, Intellectual Disability and Epilepsy Research Questions

I have been trying to read, and understand, literature about autism disorders since my son was diagnosed with an autism disorder almost 16 years ago. (Many would undoubtedly suggest I have far to go in development of that understanding). 

In the last few years I have begun to try and read and learn more about epilepsy and seizures, largely because of my son's apparent seizure activity confirmed by two classic grand mal seizures in the past 15 months.  An article on recent Companion of the Order of Australia recipients, recognizing accomplishments in their fields of a number of Australians included the recognition of Melbourne-based Professor Samuel Berkovic who, with a team of scientists, "discovered the first of the epilepsy genes back in 1995. Since then, they have found a number of other genes linked to epilepsy." 

In reading this article I was struck by the expression "genes LINKED to epilepsy" an expression often used to describe the results of autism disorders research results: "genes LINKED to autism" rather than discovery of genes known to CAUSE autism.  I sometimes suspected that autism researchers, who overwhelmingly conduct genetic based autism research, with very little serious research of possible environmental factors that might be involved with causing or triggering autism disorders,  were simply moving the goalposts after failing to find direct causes or triggers of autism disorders.  I have never doubted that genetics play an important role in causing autism. My concern was with the apparent exclusion of the obviously more difficult to conduct environmental based research.  

Since my son's seizure activities became very obvious I have become aware that some research indicates that seizures are frequently reported in persons with autism disorders as referenced in this abstract from a 1995 study by Rossi et al at the University of Bologna: EEG features and epilepsy in patients with autism:

"Epileptic seizures are frequently reported (4–32%) in autism. These values are higher than in the normal population of children and adolescents (0.5%). In the literature there is no uniform description of epilepsy in autism. We examined 106 patients with autistic disorder divided into three groups on the basis of presence or absence of EEG paroxysmal abnormalities (PA) and/or epilepsy including febrile convulsions (FC). Our patients presented an autistic syndrome unrelated to clear congenital or acquired encephalopathy. The prevalence of epilepsy and EEG PA was 23.6% and 18.9%, respectively. Significant differences between the three groups appeared for (i) familial antecedents for epilepsy/FC and neurologic and psychiatric diseases (P < 0.004), (ii) a different proportion between the three groups for mental retardation (P < 0.03), (iii) and EEG fast activity (P < 0.04). Our patients showed several types of epilepsy, including idiopathic forms with seizure onset after the age of 10 in 45% of cases. Seizures were mainly partial, not frequent and controllable by anti-epileptic drugs. PA were mostly focal and multifocal and in 45% of cases were typical of benign childhood partial epilepsy with centro-temporal spikes. The higher incidence of epilepsy and EEG PA is apparently not related to organic pre-, peri- and postnatal antecedents or cerebral lesions. On the contrary, genetic factors responsible for autism and epilepsy seem important in the genesis of these two disorders."

As a humble father of a son with an autism disorder, intellectual disability and seizure activities I am curious as to whether the genes that to date have been "linked to autism disorders" have been compared with those "linked to epilepsy"?  I am  not by any means pretending to have any competentcy in analyzing such information myself and I have no agenda in asking the question other than the curiosity of a father whose son suffers from autism and epilepsy symptoms.  If the same genes are "linked" to both disorders does that not help in understanding the origins and causes, perhaps the nature, of both epilepsy and autism disorders? If there are genes linked to both autism and epilepsy are they also linked to intellectual disability?  If anyone who happens on this blog can provide answers or information responsive to these questions it would be appreciated. 

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We Must Face Reality: Autism Disorders Can Be Harmful, Even Deadly

After discovering an arm, torso and legs Thursday, police continue the search for human remains along a rocky shoreline in Queens, Friday, Jan. 17, 2014. The remains belong to 14-year-old Avonte Oquendo, officials confirmed Tuesday. (AP Photo/Jason DeCrow) 

Neurodiversity cult members, including some autism professionals, academics and neuroscience students like to scream at parents and other family members who speak honestly about the dangers and deficits endured by children and adults who actually suffer from autism disorders.  Television, movies, and the mass media generally, love to provide a Big Bang picture of autism as persons with unique personalities and special gifts and extraordinary intelligence.  There is little appetite for, and as a result, less public awareness of,  honest, reality based discussions of the harm and dangers posed by severe autism disorders.   Lack of public understanding of the dangers posed by autism disorders may or may not have been a factor contributing to the departure, and now confirmed death of New York autistic youth Avonte but it certainly didn't help.  The Neurodiversity cult members who constantly fight to hide the dangerous realities posed by autism disorders may not be responsible in this specific case for what has occurred but they have not helped with their constant misinformation campaign, their constant suppression of the truth about autism disorders, the harm they can cause and the dangers they can pose to many with autism disorders.

As a father I was at fault several years ago, when my severely autistic son was younger, of not keeping a close enough watch on him when I took a business call on a Saturday afternoon.  For my son, and for me, it ended well when a good Fredericton man stopped his vehicle to remove my son from the busy traffic that he was facing crossing a local street, unaware of his danger, and took him to a convenience store where he called the police at 911.  I was able on the conclusion of my business call to find and recover him quickly once I too called 911.  Sadly, Avonte the autistic New York youth has now been confirmed to be dead 3 months after he simply left his school after walking past security. 

I am NOT suggesting that greater awareness of the very real dangers posed by autism would, or would not, have helped in Avonte's case.  In my son's case our school has been made clear, and the school has agreed, that our son requires, for his own safety,  24 hour  adult supervision which he also receives at home. Greater public awareness of the very real dangers posed by autism disorders must be undertaken now in order to reduce the likelihood of future deaths of autistic persons who wander from homes and schools. It is long past time to be honest about the harm and dangers posed by autism disorders.  My son and others with severe autism disorders depend on all of us being honest about the realities and dangers they face.

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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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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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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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Gene-Environment Autism Disorder Research CHARGEs Ahead With New Air Pollution Study

The belief that autism is 100% genetics has always seemed to me to be nothing more than that ... a belief ... a non-evidence based ... unscientific belief. But what do I know? I'm not a scientist, just a parent with a keen interest in autism disorders.  I was privileged to attend, courtesy of an invitation from Autism Speaks Canada, the IMFAR 2012 conference in Toronto but was disappointed, with respect to autism cause research,  that most of the environment oriented autism research was consigned to the "boards" posted outside of the main presentation rooms.  Very little that I could find was actually featured about environmental autism research.  To the best of my knowledge genetics autism research continues to receive the overwhelming share of autism research dollars and media attention. I am happy to see that a new gene-environment interaction autism study has been completed,  and is gathering some attention, a study  by first author Heather E. Volk, Ph.D., M.P.H., assistant professor of research in preventive medicine and pediatrics at the Keck School of Medicine of USC and principal investigator at The Saban Research Institute of Children's Hospital Los Angeles and senior author Daniel B. Campbell, Ph.D., assistant professor of psychiatry and the behavioral sciences at the Keck School of Medicine of USC :

"Autism spectrum disorder: Interaction of air pollution with the MET receptor tyrosine kinase gene," online ahead of the January 2014 edition of Epidemiology.

The abstract concludes that "MET rs1858830 CC genotype and air pollutant exposure may interact to increase the risk of autism spectrum disorder." On the Science Codex site the article Air pollution and genetics combine to increase risk for autism provides a report and summary I can digest and highlights the significance of the study:

"Although gene-environment interactions are widely believed to contribute to autism risk, this is the first demonstration of a specific interaction between a well-established genetic risk factor and an environmental factor that independently contribute to autism risk," said Daniel B. Campbell, Ph.D., assistant professor of psychiatry and the behavioral sciences at the Keck School of Medicine of USC and the study's senior author. "The MET gene variant has been associated with autism in multiple studies, controls expression of MET protein in both the brain and the immune system, and predicts altered brain structure and function. It will be important to replicate this finding and to determine the mechanisms by which these genetic and environmental factors interact to increase the risk for autism."

The Science Code article points out that the Campbell/Volk team studied 408 children between 2 and 5 years of age from the Childhood Autism Risks From Genetics and the Environment Study which is described at its home page on the UCDavis web site:

"CHARGE (Childhood Autism Risks from Genetics and the Environment) was launched in 2003 as the first comprehensive study of environmental causes and risk factors for autism and developmental delay. The CHARGE study recognizes that no single factor accounts for all autism cases, nor is there one event or exposure that can be responsible for the rapid increase in diagnoses over the last few decades. Instead, each child’s path to altered brain development may be different."

With all the recent, angry, irrational attacks on Autism Speaks by Neurodiversity cultists it is worth pointing out that Autism Speaks is one of the sponsors of the CHARGE study which the Campbell/Volk study team used for its research data.

The study authors point to the need for more studies replicating their results.  Hopefully more such gene-environment autism research can be conducted.

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THIS Is Autism, Conor's Autism Reality, Self Injurious Behavior

Suzanne Wright's recent honest and courageous statements in support of a National Autism Plan in the United States has attracted the wrath of Neurodiversity cult members and they will not relent. All the usual suspects  have been voicing their irrational outrage Emily Willingham, Shannon des Roches Rosa, John Robison etc.  In their modern version of the "Cold Mothers Cause Autism" non evidence based, fantasy, attack on parents that caused so much pain they condemn parents and family members for telling the world the unspeakable truths about autism: autism is a disorder, or group of disorders, harmful disorders that can inflict pain and suffering on those who suffer from them.  Following is a a comment and set of pictures I posted in May 26, 2012.  They show my son's joy turning to pain in a flash on the swings of his old grade school.  My Canon camera was set on "sports" mode to show several action shots in sequence and captured this harsh autism reality ... the kind of autism reality that you will not see on "feel good about autism" group sites and blogs.

Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash

I have never accepted, and have in fact been openly contemptuous of, the view that autism is a joy, an alternative, even superior way of thinking.   My son's autistic disorder diagnosis accurately describes autism as it really is ...  a disorder, one that  impairs the lives of those, like my son Conor, who suffer from that disorder.  In my view those who promote autism as anything other than what is, who portray autism as a feel good alternative way of thinking delude themselves and ill informed members of the public. In societies where the public participates in a democratic process to determine what services and interventions will be made available to help those in need the light and fluffy portrayals of autism do a serious disservice to those with severe autistic disorders who require help in living and enjoying their  lives.

In the picture above, and most that follow these comments, my son is shown enjoying time on the swings at the neighborhood grade school he attended several years ago.  We arrived early and no one else was present on the grounds. There was no sensory overload.  It was overcast and mildly cool but very pleasant. We made no demands on Conor and let him enjoy his time on the swings which, for the most part, he did.  We were there only  a few minutes though when, quite suddenly and with no discernible external causal factors, no external stress factors, he began hitting himself on the head.  There was no apparent internal cause for his sudden shift to self injurious behavior either.  He had enjoyed breakfast and had visited our washroom facilities for personal reasons.  He showed no indication of discomfort whatsoever prior to switching suddenly from enjoying the swings to self injury. 

Conor's sudden shift from enjoying the swings to self injury suprised me only because it was so sudden and occurred while he was thoroughly enjoying himself.   After 16 years of 24/7 caring for my son I have no idea what caused this specific outburst of Self Injurious Behavior (SIB) any more than most similar incidents where there were no obvious external or internal causes.  What I do believe, and believe fully, is that such sudden SIB's are a result of his neurological disorder, his autistic disorder.  I don' t give a darn whether any autism experts accept my anecdotal evidence or not.  Conor's SIB is part of his autistic disorder.  The many well intentioned autism researchers who gathered in Toronto for the IMFAR convention might wish to consider spending more of their time, resources and intellects reseaching Self Injurious Behavior in persons with Autistic Disorder or Autism Spectrum Disorder as it will be officially known after May 2013.

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