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.    

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.

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.  

Intellectual Dishonesty: Autism Disorders Misrepresentation Via High Functioning Autism Only Research

In the picture above SFARI presents news of two "autism" studies which purport to find that brains of persons with "autism" are overly connected as compared to those in control groups. In fact both studies intentionally and expressly excluded persons with autism and intellectual disability, approximately 50% of those with autism spectrum disorders according to the World Health Organization, from their studies. Both the studies and the SFARI news commentary describe the results as descriptive of "autism" brains rather than "high functioning autism" brains.  The studies, and the SFARI news commentary, continue the misrepresentation of high functioning autism as being representative of  all autism disorders.

In a 2008 posting on this site, Autism's Outcasts, I commented on and questioned the exclusion of low functioning autistics, those with intellectual disabilities, from media representations of autism disorders and from "autism" research. Unfortunately, these trends have continued unabated.  While the mainstream media is driven in this direction by both ignorance and profit generating high functioning representations of autism in shows such as the Big Bang Theory it is frightening to see researchers, and autism research organizations like SFARI, cling routinely to the premise that "autism research" should focus on high functioning autism exclusive of intellectual disability, pure autism,  as questioned by Giacomo Vivanti and his colleagues in Intellectual Development in Autism Spectrum Disorders: New Insights from Longitudinal Studies:

"we argue that the practice of excluding children with ID in ASD research to study “pure autism unconfounded by ID” is ill considered, just as studying the risk of cardiovascular events in individuals who are slightly overweight, or who have mild presentation of hypertension, would not be informative on the most relevant aspects affecting the outcomes of individuals with those conditions."

In the SFARI article linked above,  Autism brains are overly connected, studies find, Emily Anthes refers to two recent autism studies which she argues support the belief in the article title that "autism brains" are overly connected:

"Two of the new studies looked at resting brains and controlled for head movement. Both found that the brains of children and teens with autism show overconnectivity. In the first, published 14 November in Cell Reports, Müller and his colleagues used resting-state functional magnetic resonance imaging (fMRI) to assess short-range brain connectivity in 29 high-functioning children and adolescents with autism and 29 controls. All participants were between the ages of 8 and 18, with intelligence quotients (IQs) above 70. .......... A second study, published in the same issue of Cell Reports, turned up even more extensive evidence of overconnectivity in young children, who are typically neglected in connectivity research2. The researchers assembled three independent groups of children: 40 in California, 40 in Washington, D.C. and 30 in New York, all between the ages of 7 and 13. Each group had equal numbers of children with autism — all with IQs above 70 — and typically developing controls.”

These two studies are presented by the SFARI commentary as representative of autism generally even though persons with autism and intellectual disability were intentionally excluded from both studies.  The studies, and SFARI, also believe without any foundation that there is such as thing as "an  autism brain" and that such "autism brains" are characterized by overconnectivity.  It is, in my humble opinion, intellectually dishonest to state that there is one model of autism brain representative of all persons with autism disorders and that such brains can be described and understood by excluding from studies the 50% of persons with autism disorders, as estimated by the World Health Organization, who also suffer from  an intellectual disability.

There are consequences to the exclusion of persons with autism and intellectual disability from "autism" studies as noted by Vivanti and his colleagues:

"As the poor outcomes associated with the presence of ID in ASD result in large human and societal costs, it is important that future research systematically investigate the risk and protective factors associated with the development of ID in ASD. Indeed, excluding individuals with ID from research in ASD only renders more difficult the ultimate goal of fostering positive outcomes for individuals with ASD. "

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.

Emily Willingham Uses SFARI Pulpit To Misrepresent Severe Autism Disorder And Intellectual Disability

Emily Willingham argues that persons like my son, 

with severe autism disorder and intellectual disability, 

should remain invisible with the focus on those with

"pure" autism and no intellectual disability

SFARI has done Emily Willingham a favor, allowing her to use their site as a platform to further her efforts to render invisible the realities of life facing those with severe autism disorders and intellectual disabilities.  Willingham has no professional expertise in autism disorders on which to base her opinions.  Nor, as the parent of a high functioning autistic child, does she have any personal, real life experience on which to draw in pretending to know anything, anything at all, about the challenges faced by those with severe autism disorders and intellectual disabilities. To the contrary she is fundamentally ignorant of those severe autism realities.   That ignorance does not prevent SFARI from publishing her nonsensical essay "Cognitive Dissonance" in which she asserts that no attention should be paid to cognitive levels in assessing the severity of autism only to the core criteria of the autism spectrum [[At NO point in her opinion piece does Willingham refer to Autism Spectrum Disorder as a DISORDER. She refers to autism only as a spectrum, a condition or a metaphor]] :

"Each time my son, who is 12 years old and has autism, meets a new doctor, he hears the same awkward question, addressed not to him but to me: “So, he’s high functioning?”

The question communicates the assumption that the major concern and predictor of future success for a person with autism is cognitive function — and the assumption that my son’s function is sufficiently intact for me to respond “yes” when someone tactlessly asks that question in front of him. But how relevant is it?

Intelligence quotients (IQs) and severity of symptoms and manifestations can vary widely among people with autism, but the common thread obviously is the autism itself and the core deficits that accompany it. As the results of two studies published over the past few weeks emphasize, autism — along with the key deficits in social communication and interaction that define it — deserves more focus than the other variables that lend the condition its ‘spectrum’ metaphor."

Willingham refers to two new studies which, she apparently believes, support her view that only the core conditions of autism as set out in the DSM5 Autism Spectrum Disorder should be considered as relevant and deserving of focus than "the other variables that lend the condition its "spectrum metaphor"".   The 1st study compared various quality of life measures of 169 high-functioning (IQ>70) adults with ASD  to 3 groups of persons with ADHD (85), affective disorders (85) and disruptive behaviour disorders (83).  

The 2nd study referenced by  Emily Willingham is interesting in that it is based on data from the Simons Simplex Collection described by Willingham:

"(This collection of data from families that include one child with autism and unaffected parents and siblings is funded by the Simons Foundation, SFARI.org’s parent organization.) The [participants] teenagers all carry a diagnosis of autism spectrum disorder and are all of at least average intelligence."

Neither study compared quality of life indicators as between groups of persons with autism spectrum disorder and various levels of intellectual disabilities with those of average or higher levels.  There were no participants in either study who had an autism spectrum disorder and an intellectual disability.  The studies cited are meaningless in light of the fact that approximately 50% of those with an Autism Spectrum Disorder are estimated by the World Health Organization to have an intellectual disability: WHO, September 2013. The DSM-IV definition of Aspergers Disorder stipulated that an Aspergers diagnosis could not be given in cases where the individual had an intellectual disability.  These are significant facts of which Ms Willingham appears to remain blissfully unaware.  If the suggestion by Emily Willingham to embrace the long entrenched, misguided tendency to ignore intellectual disability in autism spectrum disorder research is accepted it will further lessen the chances that the challenges facing those most severely affected by autism spectrum disorder and intellectual disability will benefit from any such "pure" autism research. 

SFARI published the disclaimer that Willingham's opinion comment like all News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation.  Yet the fact remains that SFARI allowed Willingham to use the SFARI pulpit to misrepresent the realities facing those with severe autism disorders and intellectual disabilities to the world. 

There is little reason to hope that persons with severe autism disorder and profound intellectual disability, people like my son, will ever benefit from "autism" research as long as Willingham, SFARI and others perpetuate the "pure" autism focus that Willingham believes would be of benefit to her High Functioning Autistic son.

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

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."

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. 

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.

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.

2013: The Year Of Autism's Grand Error, The DSM5 Autism Spectrum Disorder

Photo by Harold L Doherty

Edward Ritvo-Susan Swedo Shootout at 

the IMFAR Corral, Sheraton, Toronto, May 18, 2012

The year 2013 will be remembered as the year the simplified DSM-5 Autism Spectrum Disorder definition was imposed on a very complex and diverse group of disorders and/or symptoms.  Catherine Lord, Susan Swedo and other members of the DSM-5 committee responsible for the definition change simply ignored criticisms of their proposals and pushed ahead because, in their minds, they know better than their critics.

It would be one thing if the DSM5 Autism Spectrum Disorder critics were simply parents like me. As mere irrational parents we had no standing, no credibility, no respect in the eyes of the DSM5 committee members and our views did not have to be considered.  What was amazing about the incredible stubbornness of the DSM5 committee members in pushing ahead though was the identity of some of the professional critics and the serious challenges that were dismissed without any serious response by the DSM5 team. Ritvo, Volkmar, Waterhouse,  are only a small sampling of the names of persons with important roles in the development of knowledge of, and thinking about, autism spectrum disorders who offered  criticisms of the DSM5 Autism Spectrum Disorder: 

"Abandoning criteria that have been in worldwide use for decades for new ones that may eliminate from 9% (their data) to 40% (prior reports) of previously diagnosed patients is neither scientifically nor morally justified."

- Commentary on the Application of DSM-5 Criteria for Autism Spectrum Disorder Edward R. Ritvo, M.D.; Riva Ariella Ritvo, Ph.D. Am J Psychiatry 2013;170:444a-445. doi:10.1176/appi.ajp.2013.12101376

Dr. Fred Volkmar created considerable awareness of the DSM5 ASD changes and their likely impacts with a  preliminary study reported on in well known New York Times article in early 2013.  In a May 2013 abstract he also noted that:

"While some of the changes employed in the new DSM-5 approach are praiseworthy, others are much more complicated. There appears to be some significant potential for diagnostic change, essentially as – despite what might conceptually appear to be a broader tent of the autism spectrum – the DSM-5 approach seems likely to result in a narrower concept. This raises some concern about the impact on services for children in need as well as for comparison with previous research. Sadly we are, to a considerable extent, still in the dark on the extent of this change. Although the focus on standardized diagnostic instruments has some important advantages in the real world of clinics and schools, clinicians will not have had the opportunity to undertake extensive training. In some cases the new (but relatively unclear) social communication disorder concept may be invoked, but the lack of research on this putative condition poses other problems and its use might well be taken as an excuse to avoid service provision."

Dr. Lynn Waterhouse worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism and is the author of Rethinking Autism: Variation and Complexity (2012) whose book was reviewed on the Amazon.com website by several learned commentators including Dr. Peter Szatmari who noted that "Waterhouse squarely tackles the "elephant in the room" in autism research; the complex heterogeneity seen at all levels of analysis.  The argument is sustained, learned and comprehensive. We shall all be dealing with this challenge for decades." 

Dr. Waterhouse subsequently commented in an email to DSM-5 critic Dr. Allen Frances which he included in one of his Psychology Today commentaries on the DSM-5. In her email, after reviewing some of the reports and studies crtiquing the DSM-5's New Autism Spectrum Disorder Dr. Waterhouse stated:

"These and other independent research groups have reported that DSM-5 ASD criteria will significantly reduce the number of ASD diagnoses. Their findings counter Dr. Lord's claim that DSM-5 ASD criteria will not change the number of people diagnosed. Because nearly all of those excluded from a DSM-5 diagnosis have serious developmental social interaction impairment, they cannot be correctly diagnosed by any of the other DSM-5 childhood disorders, such as Social Communication Disorder or Intellectual Developmental Disorder. These children will need services that will be more difficult to obtain without a DSM-5 diagnosis. Unfortunately, the DSM-5 group has chosen to simply ignore data that don't conform with its beliefs." (Emphasis added, HLD)

The DSM-5 Autism Spectrum Disorder is a mistake, a huge mistake, supported not by research as was perpetually articulated by DSM-5 spokespersons but solely by the preferences and intellectual biases of of the DSM-5 committee team members who pushed the new definition ahead while ignoring contrary studies, criticisms and perspectives offered by MANY learned autism professionals and academics.

2013 is the Year of Autism's Grand Error - the DSM-5 NEW Autism Spectrum Disorder. 

Autism Media Rarity: Pittsburgh Post-Gazette Autism Series Includes Severe Autism And Family Impact

Julia Rendleman/Post-Gazette

Jeffrey Maloney, 19, is comforted by his mother, Lisa, 

during a family outing at the Pittsburgh Zoo & PPG Aquarium.

In a rarity in the mainstream media the Pittsburgh Post-Gazette published an honest, informed article by Mark Roth and Julia Rendleman on the challenges faced by a family with two children on the autism spectrum, one diagnosed as PDD and the other an adult son with severe autism disorder and the impact on the family, the Maloney family,  of caring for them.  The article was the first in a 4 part series on autism disorders run by the Pittsburgh Post-Gazette   called Mysteries of the Mind. The article talks about autism from two sides including the severe autism side and does not shy away from mentioning subjects well known to parents of severely autistic children such as disruptions in routine, metldowns and self injurious behaviors including pinching, head hitting and head banging against walls. The article presents the impact on the family of caring for the two autistic siblings including the impact on the other siblings.  As pointed out in the article there is much public attention paid to very high functioning persons with autism spectrum disorders but very little attention to severe autism disorders or the impact on the families of children with severe autism.  The Post-Gazette feature tries to address this very harmful lack of autism disorder awareness.  

Neurodiversity Cultists Take Note: My Son Is A Joy; His Autism Is A DISORDER

Conor walking the North Riverfront Trail along the St John River, Fredericton

Many in the Neurodiversity cult, which irrationally embraces and worships the autism segment of the autism disorder diagnosis they sought for themselves, or their children, while discarding the DISORDER component of that label have, once again, attacked parents and other family members who dare to counter their perverse, ill informed ideology with honest depictions of their own kids autism disorders. Suzanne Wright's recent, honest, accurate, depiction of the challenges faced by so many with autism disorders and their families, has sent the autism cultists into what Autism Jabberwocky has called a collective conniption. Among the usual hate filled, knee jerk reactions is the allegation that family members, including parents, who talk honestly about the autism disorders they experience are describing the ND cultists' kids as monsters.  In truth it is only the ND cultists, those who praise autism as an Einstein like gift, who use the term monster in describing their autistic children.  

On this comment I am posting two sets of pictures (1) showing the joy we call Conor and (2) showing some of the harm inflicted by his autism DISORDER .  I have posted most of these pictures before and I don't expect the ND cult mongers who praise and misrepresent autism as a gift to actually pay attention to such evidence. They presume to know more about my son than I do.  For those, however, whose minds have not been frozen and locked forever in the Neurodiversity cult that worships here are these two sets of pictures which showns the realities of life with out son, the joy of Conor and the harm he suffers from his autism DISORDER. I believe the joy pictures speak for themselves.  The harm pictures will include a brief explanatory description.

(1) The Joy  of  Conor 

(2) The Harm of Conor's Autism Disorder

Conor engages in Self Injurious Behavior,

 including biting his hands and wrists. 

Conor has put his hands through glass windows and has to be 

watched closely when he is upset to ensure he does not do so again.

Conor's Self Injurious Behaviors include hitting himself in the head when frustrated/having a meltdown.  The picture above resulted from an incident at 3 am when Conor was hitting himself in the head with considerable force. I tried diversion strategies unsuccessfully and tried to grab his arms to prevent him from injuring himself.  He is much quicker than his old Dad and lunged forward and bit me on the bicep, biting through the skin and into the muscle resulting in the bruise above and calcium buildup. NO he was not trying to injure me, it was an example of what Dr. Sanjay Gupta called Reactive Aggression. 

Conor is very sensitive to noises usually the type of noise rather than the volume.  Some telephones ringing and some cars and motorcycle noises will set him off.  We use mobile phones in our home almost exclusively now because Conor has ripped the cords of our land lines out of the walls so many times. 

Conor, like a substantial number of the 50% of the autism spectrum who also have an intellectual disability also suffers from epileptic seizures. He suffered two grand mal seizures requiring attendance by ambulance at the Emergency room.  He ALSO suffered an adverse reaction to his medication which almost took his life and resulted in 2 weeks in hospital including 6 days in the ICU.  (Thanks again to the wonderful ICU Team at the Chalmers Hospital!)

10 years ago when we lived on Hillcourt Dr. above, just behind the parking lot of the Red Lantern pub marked above on the Google earth map, Conor wandered out of the house unnoticed.  Heather was in Nova Scotia and I answered the phone on a business call.  When the call ended Conor was nowhere to be seen.  After a frantic 911 call I recovered him from the Ultrasound gas station/convenience store on the corner of Main and Fulton above. Conor had crossed the busy parking lot of the Red Lantern Pub and also crossed a busy Saturday afternoon Main St.  Traffic was stopping to avoid hitting him and a good Frederictonian stopped his truck to take him to the Ultramar and alert 911.

I love my son dearly and I owe it to him to speak honestly about the autism disorder which limits his ability to function in this world and limits his life prospects. I will not misrepresent the nature of his autism disorder to make myself feel good.  I will fight all those who do misrepresent autism disorders as gifts. That is a promise I make to all including those at ASAN, TPGA and others who misrepresent autism to the world.