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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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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50% Some WHO Autism Awareness: Autism and Intellectual Disability 50%

Questions and answers about autism spectrum disorders (ASD)

Online Q&A
September 2013

Q: Do persons with autism always suffer from intellectual disability?

A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability.

The above information is taken from the World Health Organization website page providing Q and A about autism spectrum disorders.  Some will always choose to believe that autism and intellectual disability are totally unrelated concepts.  It is easier to do when autism studies routinely exclude participants with intellectual disability.  The research exclusion of participants with intellectual disability, as admitted by Catherine Lord,  is nothing more than a convenience for researchers and reflects the researchers own subjective biases about the nature and causes of autism disorders.  The DSM5 committee that excludes persons with global developmental delay from an autism diagnosis have also done so based on their own subjective biases and prejudices, nothing more.  They had no data or evidence or coherent rationale to support their decision.  

Parents with children in the 50% spectrum with autism and intellectual disability can't just walk away from our children.  We must do what we can for them and live in fear of what happens to them when we grow too old to care for them or when we ultimately pass on.  These are not realities faced by the DSM5 team who have now given a green light to early autism intervention providers like the CHEO to exclude children with autism and profound intellectual disability by expressly excluding those with global developmental delay from an autism diagnosis.  

"Autism" research will be easier, autism intervention programs will be less strapped thanks to the DSM5 team that, contrary to their claims, have expressly excluded many with severe autism AND intellectual disability.  The basis for the exclusion is nothing more than their own subjective belief in a "pure autism" as that belief was described by Giacomo Vivanti. 

I recommend that every parent of a child in the 50% of those with autism who also have an intellectual disability speak up and provide the world with some reality based autism awareness, make the world aware of the 50% not favored by network television series, movies, major news publications, autism researchers and the DSM5 committee members who arbitrarily decided to expressly excluded many with intellectual disability from the autism spectrum of disorders.

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Wave of Attacks on Parents of Children with Severe Autism Disorders Is Reprehensible and Based in Pure Unadulterated Ignorance

I have never read or heard any parent of a severely autistic child excuse the murder of severely autistic children by a parent.  The people who make this allegation about parents are those who object to parents speaking honestly about their children's severe autism disorders.  They also object to parents of severe autistic children describing their parenting challenges and falsely allege that such descriptions depict autistic children as monsters yet it is they who use who use the word "monster" in autism discussions. They  do so in an attempt to suppress the truth about severe autism challenges by falsely alleging that honest descriptions of severe autism  demonize autistic children.

Those who talk about "autism monsters" are the same New York and Washington press corps media darlings who never met a camera or a microphone they could turn down .... unlike the severely autistic children of many parents.  They are the same phony autism self advocates, and parents of very high functioning autistic children,  who make false allegations about parents of severely autistic children calling autistic people "monsters" when in point of fact they are the only ones using that term, a term they use when they cry because others who actually know what they are talking about describe honestly the harsher realities of severe autism disorders.  

Those who are currently attacking parents of severely autistic children are the same bunch of pompous pontificators who tell the world that autism is a joy or a blessing or a culture not ....  heaven forbid .... a disorder or group of disorders.  In their silly, ill informed minds it is wrong to speak about autism as a mental health disorder.  It is the same silly bunch that forget  that they, or their children, actually have a medical disorder diagnosis. These same ignorant self appointed judges even object to terms like "severe" autism as though the severe autism of my son even remotely resembles the "autism" of the corporate trustees in the alleged Autism "Self" Advocacy Network corporation. 

The fact is that severe autism can be difficult, very difficult to deal with day in, day out, over more than 20 years.  It can involve self injurious behavior. It can involve reactive violence.  In almost all cases it involves severely autistic and intellectually disabled people committing violent acts without knowing what they are doing.  It also involve people most of whom will never achieve gainful employment and people who will live, if they are lucky in the care of others. These are facts which are largely unknown in any real sense to the reprehensible attack dogs who feel free to use their corporate sponsored pulpits to attack parents dealing with much more serious challenges, and as they and their children grow older, dealing with the fears of  what will happen to their children after they die.

The truth is that most parents of severely autistic children are reluctant to speak about the harsh realities of severe autism in their home. They have to deal with those realities themselves while the world at large is misled about autism realities. 

Few people today are aware that some autistic children do injure their parents on occasion.  I believe it is fairly described. as CNN's Dr. Sanjay Gupta did, as "reactive", non intentional aggression.  A few years ago, as my son was hitting himself in the head repeatedly at 2 in the morning, I tried to stop him.  I tried various diversionary verbal games that had worked in the past to no avail. Finally I reached for his arms in an attempt to stop him from hurting himself further.  His much younger reflexes moved quickly and he bit me on the bicep with enough force that he pierced not just the skin of my arm but the muscle itself resulting in a calcium buildup that required treatment.  He was not trying, in any sense, to harm me.  My son is a tremendous joy as the pictures on the sidebars of this blog and regularly shown on this blog attest but when he has a meltdown he can harm himself and is very challenging to deal with and these are realities unknown to the "autism as culture" pontificators adored by corporate interests.

Four years ago Gertrude Steuernagel, a university professor, was beaten to death in her own home by her 18 year old severely autistic son who also forcefully resisted and inflicted some harm on police officers who arrested him. That case is not representative of most severe autism realities but some parents are hurt to lesser extents by their severely autistic children who mean them no harm but are having severe meltdowns.  The parents, by and large suffer in silence, for fear there will be consequences for their children or themselves and with the certain knowledge that the presumed knowledgeable high functioning self advocates and parents of HFA persons will condemn them to the public.

What pushes  many fears for parents though is the knowledge that few resources suitable for persons with severe autism disorders, including decent, modern residential care facilities exist for their children.  Advocating for such resources, as I have found out personally, is made more difficult by the feel good  rhetoric of the times.  Waves of feel good cliches like "community", "inclusion", "ableism" etc. have taken the place of sound policy and maintenance of appropriate ranges of services for those most severely affected by conditions like severe autism disorders.  

Ignorance is not bliss when it misinforms the world about serious, severe autism disorder realities. 

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Severe Autism: Autism in the Shadows - Thank You Amy Mackin

"My son’s story is one of hope, not unlike the stories regularly broadcast on television, printed in magazines or making the rounds on YouTube. Yet the autism spectrum is wide and diverse, and many who suffer from severe autism will never reach the level of functioning that my child has achieved. Although these people are also part of the story, we rarely hear their stories."

Amy Mackin, Autism in the Shadows, Washington Post, July 19, 2013

Amy Mackin is a writer and a blogger who writes at www.amymackin.com.  She is also the mother of an autistic child who she describes as high functioning in the Autism in the Shadows opinion piece she wrote for the Washington Post. Although here son is high functioning Ms. Mackin's article is an eloquent, direct and powerful statement about the invisible autistics, those who live at the severe end of the autism spectrum.  As the father of a 17 year old son who lives at the severe end of the autism spectrum I thank Amy MacKin for her concern for those with severe autism, those who are ignored and neglected (with some exceptions) by both the mainstream media AND by  autism research professionals.  Amy Mackin has spoken the truth about severe autism honestly and directly:

"We must see the pain of a parent who watches her child smash his head against a concrete wall, who throws himself on the floor of a store because he simply cannot stand the fluorescent lights another second; the person who starts violently screaming because the crowd getting off the subway terrifies him. We must feel the anguish of compassionate caregivers when everyone around is staring at their loved one with horror and judgment. We must comprehend the grief of parents who are forced to acknowledge that their children may never be able to care for themselves, and we should consider all the future decisions and worry that realization encompasses.

Many personal stories about autism make us smile and renew our faith in humanity. But some stories will make us cry. They should, because autism can also be terrifying and hopeless. This side of the spectrum still lurks mostly in the shadows. But to fully understand why we search so exhaustively for answers and doggedly seek a cure, these stories must be seen and heard, too."

Thank you Amy Mackin. 

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Autism`s 40% With Intellectual Disability? Auti$m $peak$ Doesn't See YOU, Doesn't Speak For YOU!

Autism Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

Autism Speaks chose not to stand up for the intellectually disabled members of the "àutism community" even though they were  expressly  maligned in the original lyrics:

Hip Hop Lyric Insults Autism Community

"Lyrics from the recently released song “Jodeci Freestyle” from hip hop artists Drake and J.Cole have many in the autism community up in arms. The song, which was released last month and is now getting airplay, contains the following lyric by J. Cole: “I’m artistic, you n----s is autistic, retarded." 

These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music. We encourage J. Cole to recognize their talents and learn from the positive example they have set for all of us."

This is not the first time Autism Speaks has chosen to ignore the intellectually disabled 40% while promoting the very, very, very high functioning elite members of the autism spectrum like J. E. Robison and Alex Plank.  There is almost never any mention of the intellectually disabled in promotions and news releases by Autism Speaks or on their web site.  I have previously noted that Autism Speaks has only reluctantly acknowledged the existence of intellectual disability on the About Autism section of its web site burying mention of 40% with ID in the middle of the page, book ended by references to those with high IQs and abilities.

In the "rapper incident" AS went further than just ignoring those with autism and intellectual disability.  They implied that persons with autism, all persons with autism, are in fact talented, successful people.  They were ashamed to mention and defend the 40% with autism and Intellectual Disability.  The rappers have offered sincere apologies and taken steps to address the issue by changing the lyrics.  Rapper J.  Cole even acknowledged the existence of those with severe autism and their families.  By their actions Drake and J. Cole have shown themselves to be ahead, light years ahead of Autism Speaks in caring about ALL persons on the autism spectrum including the 40%  intellectually disabled.  

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DSM5 Autism Spectrum Disorder Has Arrived: Are Ari Ne'eman and John Elder Robison Still Autistic?

The DSM5 has been released and is now beginning to impact the world of autism.  Most discussion of the DSM5's New Autism Spectrum Disorder has ignored the effect of the language of mandatory criterion A which will act to exclude from autism diagnosis those with severe intellectual disability. Most of the discussion has focused on the potential exclusionary impact on those who would meet DSM-IV Asperger's criteria.  That being said the DSM5 autism team leaders have assured the high functioning end of the DSM-IV autism spectrum that those currently diagnosed with Asperger's or high functioning autism will not lose their diagnosis.  They will in effect be "grandfathered" in to the new autism spectrum. The answer to this commentary's title question is  therefore NO, Ne'eman and Robison, two very high functioning "Aspergians" will not lose their autism diagnoses.  

Although they will be grandfathered into the new DSM5 autism era will Ari Ne'eman and John Elder Robison and other  very, very high functioning "Aspergians" and "Autistics" remain as credible (in the eyes of mainstream media and Autism Speaks) spokespersons for persons at all points on the DSM5 autism spectrum?  Will persons who routinely appear in high profile media interviews before the Washington press gallery, New York magazines, CNN, CBC, BBC, run successful businesses, establish corporate entities, sit on the boards of directors, participate in IACC meetings  and in some cases raise families be able to speak on behalf of those who meet mandatory  Criterion D of the DSM5 New Autism Spectrum Disorder which states that the social communication and restrictive repetitive symptoms together limit and impair daily functioning?  Can the corporate directors of the ASAN corporate entity, including those with professional and academic backgrounds and some with families, claim to be limited and impaired in their daily functioning in any meaningful way? 

The real answer is that it doesn't matter if they would meet DSM5 autism criterion D.   Convenience is the reason that researchers have so often excluded those with severe autism and cognitive challenges from their studies.  Researchers, like the media, need very high functioning participants and interview subjects to do their autism focused work and earn their pay cheques. Robison and Ne'eman's careers as autism spokespersons/"self" advocates are safe.  Persons at the more severe end of the autism spectrum will remain invisible, hidden from sight, and excluded from research,  while high functioning "self" advocates speak on their behalf.

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Mother Of An Autistic Son Asks Autism Speaks for Some Actual Autism Awareness

The following commentary  is from the blog Muslimah Next Door  written by Dishad Ali. It addresses an issue that I have raised several times - the lack of real autism awareness created by autism awareness events. The author's comments at Muslimah Next Door under the title When an Autism Awareness Event is Anything But are followed by a letter from  Harshita Mahajan the mother of a teenage autistic son addressed to Autism Speaks.  I sincerely hope that Autism Speaks takes the mother's concerns, and the contents of her letter, seriously and begins to provide during autism awareness events awareness of the realities of autism disorders including some of the challenges presented by autism mild and severe. 

"We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it?

Fundraising is not bad, and of course autism organizations must capitalize on the attention garnered in this month. But, if you’re going to frame event as “autism awareness,” then there be some education happening to make people “aware” of what autism is, what it entails, how it can be manifested. (Unless it is a closed event just for the autism community) There better be autism ambassadors at these events making sure things go as smooth as possible for those with autism (and without) who attend said events.

My friend Harshita Mahajan took her autistic teenage son Sahil to an autism awareness event recently sponsored by Autism Speaks, at which her son had a lapse of self-control. What happened after that was upsetting and resulted with Harshita leaving with her son. For this to happen at an autism awareness event – well the irony is not lost on me. Read her story. Share it. Let’s make sure events advertised as being about ”autism awareness” educate people, not just fundraise."

I encourage anyone interested in autism disorders to read the letter by Harshita Mahajan as posted on the Muslimah Next Door blog under the commentary When an Autism Awareness Event is Anything But.

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Autism and Seizures: Conor's Second Grand Mal Seizure (That We Know Of)

The pictures above were initially posted on this site on May 26, 2012, several months before Conor's 1st known Grand Mal Seizure in November. As I posted then, external conditions were perfect and Conor was enjoying a favorite activity in a favorite location when he suddenly began hitting himself in the head. I don't  know what caused it, Conor lacks the communication skills to explain, but it was definitely internal. Together with many similar circumstances including sudden closing of his eyes and looking blankly into the distance I reported them to his pediatrician as possible seizure activities. The pediatrician did not disagree but did not want to provide medication in the absence of any falling behaviors. Two Grand Mal seizures later and a visit to a neurologist and Conor is just now starting on medication which will hopefuly reduce seizure activity.  

My autistic son's second Grand Mal seizure, of which I am aware, happened when I was in an adjacent room less than 15 feet away this past Sunday. I heard the noises when his seizure began and recognized them this time for what they were. I jumped up immediately, laid him on his side and cushioned his head while his Mom called the excellent 911 emergency responders who took Conor to the local hospital, the DECH, for the excellent care and attention they have have always provided members of our family. (Including me during my recent hospitalization for a major asthma attack). 

 I was scared this past November when Conor suffered his first Grand Mal seizure. I was just as scared this second time. I can't believe that this can happen repeatedly without serious life threatening consequences especially if no one hears him during the night, or if it happens during swimming which he dearly loves. Conor was seen by a neurologist just 4 days earlier and we had, after some base line blood tests were done, started on the low dose end of a progressively heavier medication schedule. Hopefully as the dosage is increased and has time to take effect the seizures will cease. 

Autism, as portrayed by most autism "awareness" groups, is far removed from the reality of severe autism with intellectual disability and sezures/epilepsy. I know it and the APA wizards who contrived the DSM5 ASD know it. Life will be easier for them and the researchers who conduct autism research while excluding those with intellectual disability, a trend which they have followed for many years and which is now condoned by the DSM5. The difficult conditions that are usually found with the severely autistic and make life difficult for autism researchers and clinicians ... intellectual disability, self injurious behaviors and seizures will be reduced substantially by being relegated to the invisible category of intellectual disability in the DSM5. 

I look at the multitude of "autism" studies on Google Scholar and have no idea what most of them involve in terms of autism as a disorder or the serious conditions which are related to the severe forms of autism. I do know that very few of them address the severe realities faced by my son. I do know that when the APA spends several years "recompartmentalizing" the diagnostic criteria for autism and epilepsy to come up with the DSM5 ASD they are doing no one with severe autism any favors. Their efforts and funds would serve a far better purpose if they followed the lead of the emergency responders and hospital staff at the DECH who have treated Conor and cared for him so well. Focus on helping people with autism, particularly those most in need, and save the idle academic curiosity "autism" studies for your retirement.

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CNN's Very High Functioning Autism Awareness Efforts Misrepresent Autism Disorders

CNN's Portrayal of Autism In the Days Surrounding WAAD 2013

Middle - Jack and John Elder Robison - High Functioning Aspergers

Bottom -Trevor Pacelli High Functioning PDD-NOS (Holli Dunn Photography)

To no big surprise successful, very high functioning Asperger's businsessman, author and family man John Elder Robison's new book Bringing Up Cubby has benefited from two high profile interview promotions on CNN. A promotional appearance with his son on Dr. Sanjay Gupta's Sunday show was followed with a gushing interview on the CNN morning show Early Start. CNN, and its in house neurosurgeon Dr. Sanjay Gupta, have long delighted in interviewing very intelligent persons with autism.

Neither of these interviews enlightened the world about the realities faced by those less fortunate than the Aspergers family Robison, those with severe autistic disorder. There was discussion of not having a lot of friends but no discussion of intellectual disabilities, serious self injurious behaviors, children wandering, sometimes with dangerous consequences, far from family or schools, the challenges of severely autistic children in schools or in finding a place to live when their parents grow old and ultimately become deceased.

CNN's autism awareness effort wasn't restricted to promoting very high functioning businessman John Elder Robison's literary career. It also assisted in kick starting the career of yet another very high functioning person with autism. The CNN obsession with high functioning autism continued  with a special to CNN article by Trevor Pacelli self described as a high functioning individual with PDD-NOS. Below his Holli Dunn Photography picture it states that: "Trevor Pacelli, 20, maintains a 3.6 GPA at community college and has been accepted to five universities."

Several years ago CNN afforded several episodes to the Amanda Baggs story, portraying her as low functioning. Subsequent to the CNN-Baggs collaborations several former acquaintances of Baggs, who attended the same private school for gifted youths, as she had attended came forward on the internet to describe her as a highly verbal, creative individual with normal functioning abilities.

I am not suggesting that CNN or Dr. Sanjay Gupta intentionally misrepresent autism to enhance ratings and profits. I recognize that Dr. Gupta has a busy schedule and it would not be easy for him and his crew to visit a facility caring for children, youth or adults with severe autism disorders.   I am simply stating that, for whatever reasons, Dr. Sanjay Gupta and CNN present misrepresent autism to the world by repeatedly featuring high functioning persons with autism.

Obviously Dr. Gupta and CNN are not alone in portraying high functioning autism as representing the entire autism spectrum.  Autism Speaks engages in the same exercise with  very high functioning  John Elder Robison and high functioning Alex Plank and tends to downplay intellectual disability and other inconvenient severe realities facing many with autistic disorder.

Autism fund raising power houses and major mainstream media alike misrepresent autism to the world painting a picture of autism as gifted, shy individuals while ignoring the harsher realities facing those on the severe end of the autism spectrum.

This misrepresentation provides cover for governments in funding autism research and  in providing services for those with severe autism disorders: why waste dollars researching or providing services for a disorder that appears not to be a disorder after all? 

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Autism Speaks Reluctantly Confesses: 40% Of Persons On Autism Spectrum Have Intellectual Disability

Intellectual Disability remains the Elephant in the Autism 

Living Room;no one wants to admit it's there or to talk about it

It is politically incorrect in today's autism world to acknowledge the existence of the invisible autistics, the one's unlike Ari Ne'eman, John Elder Robison, Alex Plank and  Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism "self" advocacy have literally built careers telling the world what it means to be "autistic".   Meanwhile those with intellectual disability who constituted autism's "vast majority" prior to the DSM-IV expansion of the pervasive developmental disorder category to include Aspergers remain invisible and unmentionable in polite, successful autism circles:

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp 

Against that background I must give some slight praise to Autism Speaks for daring to mention, albeit hidden deep in  the FAQ section, carefully book ended by reference to autistic savant skills and those with normal to above average intelligence, that, Oh My Gosh,  40% of persons on the autism spectrum have an intellectual disability:

What Does it Mean to Be “On the Spectrum”? 

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have intellectual disability (IQ less than 70), and many have normal to above average intelligence. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently.

Autism Speaks, like the APA committee that drafted the DSM5 autism criteria to exclude the most severely intellectually disabled from an autism diagonosis even if they meet all the specific criteria for an autism spectrum disorder, does not wish to openly speak the truth: intellectual disability is not just a co-morbid or coincidental disorder that just happens to be present in the vast majority  of cases of classic autistic disorder. It is for the original vast majority a description of their  developmental deficits, while those with Aspergers do not have intellectual or language deficits most of those with Autistic Disorder do.  The intellectual disability is a feature of their autism disorder whether extremely high functioning Aspergers self advocates, fund raising entities like Autism Speaks or even the APA wish to acknowledge it.  

There is no reason to artificially separate the intellectual disability from the "autism" symptoms.  There is no scientific basis for doing so and it is morally and ethically wrong to do so.   

It is scientifically unsound to hide the reality that intellectual disability is an integral part of autistic disorder.  It is just as immoral and unethical to hide that reality, to pretend that intellectually disabled are not truly autistic as it would be to pretend that persons of different racial, gender characteristics or sexual orientations do not count as full human beings. 

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World Autism Awareness Day 2014

If past is prologue very little awareness of the harsher realities of autism symptoms will be generated on this WAAD, April 2, 2013.  Next year, in 2014,  and for years thereafter, the streamlined DSM5 autism will also eliminate many on the very high functioning and low functioning ends of the autism spectrum. 

It is unfortunate that in the DSM5 Autism Spectrum Disorder definition the American Psychiatric Association is revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. There is no good reason to wreck havoc on autism research and diagnosis by redefining yet again what we are talking about when we say "autism".  

The autism disorder picture, already muddied and muddled by "self" advocates and others who promote autism as a blessing,  will have even less real meaning as the APA, without any scientific or ethical reason, eliminates the most severe cases of autism from future diagnosis. Autism research, already challenged by previous DSM definition changes and alleged increased awareness, will become increasingly challenged.  

The actions of the APA in redefining autism in the DSM5 reflect the intellectual biases of the APA drafters, are in breach of the "first do no harm" principle and  are unethical. Be aware of that on this World Autism Awareness Day 2013 and prepare for a new autism on WAAD 2014, one that will look much different than the autism about which the world is expected to become more aware today.

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Canada's World Autism Awareness Day Act: Great Preamble, Zero Action

On November 1, 2012 Canada passed An Act respecting World Autism Awareness Day an Act with a great preamble which provides for absolutely no action to ensure that effective evidence based early intervention for autism would be provided to all Canadian families affected by autism spectrum disorders.  

Talk, and rhetoric, is cheap.  Intervention is not. Failure to provide intervention and services is not cheap.   The human and financial costs of failing to take effective autism action continue to rise across Canada. 

60-61 ELIZABETH II

——————

CHAPTER 21

An Act respecting World Autism Awareness Day

[Assented to 1st November, 2012]

Whereas autism spectrum disorders affect a significant number of families in Canada;

Whereas Canada has a health care system and social safety net to prevent illness and serve citizens;

Whereas Canadian families affected by autism spectrum disorders have unequal access to services across the country;

Whereas worldwide the number of diagnoses of autism spectrum disorders is growing;

Whereas a greater awareness of the importance of early diagnosis and treatment for people with autism is required to engage more Canadians in helping their fellow citizens;

Whereas early intervention in the treatment of autism spectrum disorders can have promising results and help people engage with and contribute to society;

Whereas there is no known cause or cure for autism spectrum disorders;

Whereas 192 United Nations representatives agreed that World Autism Awareness Day would draw the attention of people across the globe to this neurological disorder that is affecting an increasing number of families;

Whereas in 2007 the United Nations General Assembly designated April 2, from 2008 on, as World Autism Awareness Day;

Whereas Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities, which maintain that children with disabilities should enjoy a full and decent life in conditions that ensure dignity, promote self-reliance and facilitate their active participation in the community, while also enjoying all human rights and fundamental freedoms on an equal basis with other children;

And whereas Canada is a member of the United Nations and supports the work of this vital international organization;

Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

SHORT TITLE

Short title

1. This Act may be cited as the World Autism Awareness Day Act.

WORLD AUTISM AWARENESS DAY

World Autism Awareness Day

2. Throughout Canada, in each and every year, the second day of April shall be known as “World Autism Awareness Day”.

Published under authority of the Senate of Canada

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World Autism Awareness Day 2013 Should Include Some Autism Reality

April 2, 2013 will feature another World Autism Awareness Day around the world.  Many blue lights will shine, politicians will pose and take credit for helping advance the cause of autistic persons and their families, countless media reports will talk about the gifts of autism and television series and movies alike will feature gifted individuals and autism, once again, will be portrayed for public consumption as the domain of brilliant if socially quirky personalities.  Little if anything will be said about the vast majority of those with autistic disorder who are limited by intellectual disability, or about  those who suffer from  obsessive behaviors, serious sensory issues, epilepsy and seizure activity, self injurious behavior, or spontaneous aggression in the form of property and furniture damage or even reactive, spontaneous aggression towards parents and caregivers. Of course nothing whatsoever will be said about the ultimate realities facing autistic children and their families.  We all age, our children become adults and the parents who care for their children grow old, feeble and .... deceased. When these events occur our severely affected autistic children will live out their time in various types of institutional arrangements including psychiatric hospitals ... if they are among the fortunate with any place to live.   

Feel free to keep shining your blue lights and repeating the words autism awareness until you are ... blue in the face. But please try to actually raise autism awareness by talking about the serious challenges facing those with autism symptoms and disorders from which they will suffer for the rest of their lives. 

Shine your blue lights but start being realistic. If you really care about some one with autism and want to help the and make positive changes start by telling the world the truth about autism.  Create some reality based autism awareness.

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Conor's Quiet Joy

Autism is a spectrum in many ways including the ways in which it is presented through various media. Everybody, particularly the main stream media,  loves the feel good stories of accomplishment.  We all suffer when we see images of self injurious behavior: common occurrences in severe autism although rarely reflected in the mainstream media or in autism research accounts.  The photos of my son Conor in the composite above show him during the recent holidays in a calm, happy mood that is seldom depicted in portrayals of autism. 

Despite the hustle and bustle that comes with the season Conor, who can become quite agitated by loud, strange noises and disrupted routines, was able to stay calm, enjoy the company of visitors and ...  be happy.  I had not viewed these images when they were taken and found them while saving some recent outdoor pictures.  

I can't explain to someone who does not have a severely autistic child with profound developmental delays how much moments like these mean to me. Conor's quiet joy is not the stuff of a CNN feature but capturing and revisiting it  makes this Dad very happy. 

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Autism Awareness Day April 1, 2020

Autism Specifics Press Release, April 1, 2020:

Autism Specifics President "Aristotle" Newman and ASAN President Dr. Jerry Dobson will be jointly reflecting today on important events in the autism world during the past year.

1. First anniversary of DSM5.13  This year marked the first year since the DSM5 that a revised edition of the DSM5 has endured an entire year without being modified. Changes introduced by the classic, original DSM5 were revolutionary, particularly with the steps taken to exclude the intellectually disabled from the autism spectrum, but revisions were introduced periodically to deal with oversights in the classic edition.  Previous revisions of the DSM5 had seen repeated tinkering with the somewhat unclear Intellectual Disability exclusion language. With the DSM5.13 changes finally and clearly excluding anyone with an intellectual disability the latest revision has remained unchanged for a full year!

2. Autism Rising Debate Is Over. Some had argued that the frequent revisions to the DSM5 had rendered epidemiological studies useless in determining whether autism was really increasing or whether autism diagnoses were more numerous because of enhanced awareness.  While others did not hold to that view the debate became irrelevant as each revision created greater specific awareness of what really constitutes autism.  With each such revision the APA, Autism Specifics (formerly Autism Speaks) and ASAN all came to agree that since our knowledge of autism is now more specific there is just no point in fussing over whether it is increasing since we are after all starting over again in our understanding of autism.

3.  Autism Is Not A Disorder Debate Settled. With the latest revision to the DSM5, with the full and final exclusion of the intellectually disabled, we now clearly understand that autism is not now and never was a disorder or grouping of disorders or symptoms.  Autism, in the words of Saint Estee, is a Joy.  It is a culture of people with exceptional scientific, literary and artistic talents.  The old DSM5 language Autism Spectrum Disorder is now known as Autism Spectrum Culture.

4. Research and Treatment Update.  With the end of the constant search for causes of autism now that we know it is not a disorder the millions of dollars spent on genetic autism research and several thousand dollars spent on possible environmental causes of autism can be directed elsewhere.  Likewise treatment is unnecessary in the full realization that autism is not a disorder. These monies can now be directed to autism awareness projects celebrating our enhanced awareness of he Autistic Symphony.

5. End of the Aspergers Revolutionary War.   Another heated debate has ended with the end of the Aspergers Revolutionary War, the online struggle between those who fought the removal of the Aspergers Syndrome diagnosis from the DSM5 and those who thought it was part of a greater good.  With the full and final exclusion from the autism spectrum of the intellectually disabled the Asperger's Revolutionary Army members realized that Aspergers had not been removed at all, that autism as now defined is simply Aspergers with a new name: Autism Spectrum Culture.  As part of the peace treaty to end the war the AR Army warriors agreed with the APA, AS and ASAN to consider the possibility of renaming the Autism Spectrum Culture in the DSM5.14, changing it to Aspergers Spectrum Culture. 

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A Real Canadian Autism Hero - Stefan Marinoiu

Stefan Marinoiu is not a federal or provincial political figure, or an entertainment celebrity of any kind talking endlessly about raising autism awareness without taking any action to help the 1 in 88 Canadians who suffer from autism disorders.  Stefan is a real Canadian autism hero.  He has made courageous efforts to have our federal government address Canada's autism crisis. 

Stefan has raised autism awareness without the benefit of political or media connections. He has not done so in order to obtain free travel to Banff or the UN or to augment a political career, he has done it to help his son, Simon,  and  others with autism disorders.  He has done it by twice putting his life at risk with a mid winter walk :autism" trek from Toronto to Ottawa and with a  hunger strike.  I was very pleased to meet Stefan and his wonderful family in Toronto.  Stefan did not confine his efforts to simply raising the awareness as happens with so many much less challenging efforts. Stefan actually advocated for  our federal government to get involved in a meaningful serious way to address Canada's autism crisis.   

Unfortunately the Stephen Harper-Mike Lake government does not want to acknowledge or deal with Canada's autism crisis and there will be no federal progress in Canada as long as the Harper version of the Conservative government holds majority control. Not a single member of our Harper Conservative government, not even those with family members affected by autism, have bothered to push for meaningful federal efforts to address Canada's autism crisis. I doubt though that Stefan will give up.  I will try to follow Stefan's example and continue efforts to advocate for meaningful efforts by our federal government to address Canada's autism crisis.  

Those of us who believe that our federal government should offer meaningful assistance to the 1 in 88 Canadians with an autism disorder have to look past the Harper era and look to NDP and/or Liberal governments to address Canada's national autism crisis.  We can't  give up in the face of Harper's indifference, we must keep fighting and refuse to give up.

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Australian Familiy's Harsh Autism Reality

The mainstream media, the blogosphere and Twitter are full of dreamy commentaries  telling the world that autism is not really a disorder, it is a beautiful culture, a different way of  thinking that is helping make the world a better place.  Meanwhile parents of severely autistic children around the world know better as illustrated by this Australian family's story  in the Fraser Coast Chronicle's The harsh reality of autism:

Christian's autism means he will probably never experience the beauty of friendships, will never feel the bonding love of a partner. His autism is so severe it keeps him from speaking. He has never said "I love you mum". And probably never will. He still wears a nappy, and might do for the rest of his life. He barely sleeps, eats only Vegemite scraped on white bread or salt and vinegar chips, and drinks only apple juice from a baby's bottle. One interesting aspect of his condition are his compulsive needs. He has a set of toy cars that are always assembled in the same order and in a straight line on the kitchen table. His brother sometimes messes them up to torment him. But brothers are like that. 

Christian's condition demands routine and even then the smallest thing can lead to a "meltdown". He will bang his head on floors, against walls, whatever is near. The thing about a meltdown is they can happen anywhere - in a shopping centre, in the car on the way out the driveway, they can even happen at school. "You can't stop them," Tracey says. "They can last all day."

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We Are Fine Enough: A Mother's Story of Her Son and His Severe Autism Realities

We Are Fine Enough, the video embedded below, is a moving and honest account of Charlie and his severe autism and cognitive impairment.  The story is told through the narrative of his mother Cynthia Bartlett, who lives with Charlie  here in New Brunswick, and photos taken over an extended period  by photographer and photojournalist  Marc Schlossman.   More details,  as posted on Vimeo, follow the video.  As anyone reading this site is aware, my son Conor also suffers from the realities of severe autism.  I was moved by Cynthia's honest, calm  portrayal of her son's challenges and the evidence it provides of the severe autism realities that do not usually show up in large mainstream media productions.  

We Are Fine Enough from Marc Schlossman on Vimeo.

'We Are Fine Enough' is an intimate, powerful and sensitive portrayal of the life of an autistic child and the ways in which he and his family cope with his disability. In 1994, Marc Schlossman began a photojournalism project documenting the life of Charlie, a five-year-old boy with severe autism and profound learning difficulties. He has continued documenting Charlie, now 20, and his family. Cynthia Bartlett, Charlie's mother, saw her one-year-old son develop the most severe level of autism within autistic spectrum disorder. Only now is Charlie starting to seek and enjoy social contact. Yet he remains self-injurious, he has no ability to speak and he is incontinent. He is dependent on his mother and those around him for his basic care.

'We Are Fine Enough' consists entirely of still photographs from Charlie's life with a narration by his mother. The film began as four 3-minute films commissioned by Channel 4 in the UK for their '3-Minute Wonders' slot and was broadcast in September 2005. Marc began the project to increase awareness of lives with autism and to build a greater understanding of autistic spectrum disorders. 'We Are Fine Enough' is the culmination in film of a long-term commitment to providing a unique view into lives with autism. 

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