Showing posts with label autism spectrum disorders. Show all posts

My Reply to Non Autism Expert Dr. David H. Gorski Also Known as ORAC




Dr. David H. Gorski, who is NOT an autism expert, somewhat ironically,
  attacks parents, professionals and journalists who disagree with
his autism disorders opinions as "quacks"


Dear Dr. David H. Gorski.

Thank you for acknowledging your total lack of autism expertise.  For the benefit of  readers unfamiliar with your "style:" I did not make the statements set out in quotation marks by you,  the learned Dr. Gorski which you altered to suit your (silly) purposes.  The statements in quotation marks are silly distortions, falsifications, of what I actually said in my blog comment on the Alex Spourdalakis case:

1. Orac
September 7, 2013
Shorter Harold (from that link):
“I’m awesome and know autism. I even have a Queen Elizabeth II Diamond Jubilee Medal to prove it! Emily Willingham doesn’t and is exploiting the Alex Spourdalakis murder for evil intent. Oh, and it will be decided by the court, not bloggers.”
That last statement is what I refer to as a “Well, duh!” statement and an attack on a straw man. No one is claiming that the Spourdalakis case won’t be decided by the courts.
Add to that in the comments here:
“You can’t comment on the Alex Spourdalakis case unless you’re an expert in autism or have personal experience with autism. If you do comment your are proclaiming yourself falsely to be such an expert.!
Seriously, though, I share Kreboizen’s curiosity about Mr. Doherty’s stance towards autism biomed.
BTW, I added a couple of fresh quotes about the Spourdalakis case to this post, one from John Stone and one from Kim Stagliano. They are doozies, so much so that I wanted to feature them somewhere. I didn’t think they deserved their own post, however.

2.     In comment #50 on your Respectful Insolence blog rant Is Sharyl Attkisson feeling the heat over her irresponsible reporting of the Alex Spourdalakis case?   I asked a simple question in respect of the trial of Alex Spourdalakis case:

Anyone here know if Dr. David H. Gorski will be appearing in the Court proceedings to give testimony as an autism disorder expert?

You moderated (changed)  my comment to change the name in my question from Dr. David H. Gorski, your actual name, to  Orac, the name  under which you attack and denigrate autism parents, professionals,  journalists and anyone else who questions your opinions.

Harold L Doherty
Canada
September 7, 2013
Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert

Why you ran away from this simple truth is not clear since everyone knows that the Disrespectful AND Insolent blogger Orac is actually Dr. Davd H. Gorski.

As for my blog reference to my QE II Diamond Jubilee medal it  is simply a recognition that my involvement with autism, apart from my son's own severe autism disorder has also included 15 years of successful advocacy for all children and students with autism in New Brunswick, Canada to receive evidence based  (as determined by real autism experts like those at the office of the US Surgeon General, the American Academy of Pediatrics and the Association for Science in Autism Treatment) early intervention and school instruction and support services.   At all times in any autism advocacy in which I was involved I have tried to follow such expertise and the expertise and guidance of local academics and clinicians, who unlike you Dr. Gorski, have considerable expertise in autism disorder issues.

Neither Ms. Emily Willingham nor Dr. David H. Gorski have published any references to indicate they have done any advocacy for children and students with autism disorders or that they have any academic or real life involvement with severe autism disorders and the impacts they have on parents and family members.  Instead they choose to attack parents of children with severe autism disorders about whose challenges both Willingham and Gorski are totally ignorant and ill informed.  

To address Dr. Gorski’s perpetual issue, and mode of dismissing any autism parent on any issue with which he disagrees, I support public vaccination programs and my family, including myself,  receive all vaccinations recommended by our family doctor. This fall I will receive a flu vaccine as recommended by my treating respiratory specialist after I was hospitalized this past spring with a respiratory infection coupled with an aggravated asthma attack. I follow my doctors' recommendations.   

Although I am not convinced of the role of vaccines (in causing autism in some cases) I do recognize that vaccines, like any medical treatment, can have adverse side effects.  This summer my younger son who also suffers from epileptic seizures suffered an adverse reaction to his anti-seizure medication of that time Lamictal/Lamotrogine.  ( For Dr. Gorski's benefit a high percentage of persons with autism also suffer from epileptic seizures, particularly when, like my son, they also have an intellectual disability). The conclusion that my son’s life threatening adverse reaction was caused by his medication rather than an infection was reached, after direct observation, testing and successful treatment  by the ICU team that saved his life, not by me.

Even the US Vaccine Court has recognized that vaccines can have harmful side effects some of which appear to relate to autism symptoms. (Dr. Gorski can challenge Dr. Jon Poling to a public debate  on that issue if he wishes to show off his all consuming  knowledge of science, vaccines and autism disorders.  No I won’t hold my breath waiting for a Gorski-Poling match  I don't  think Dr. Gorski has the parts for that).   What Dr. Gorski who is NOT an autism expert may not understand is that autism as a singular disorder is losing standing the community of autism experts who view autism more as a grouping of autism disorders or symptoms.  Arguably this paradigm shift will call into question some of the concessions made by the US in the Vaccine Court cases where autism like symptoms were acknowledged but not “autism”.

Dr. Gorski's venomous attacks on parents, professionals and journalists who do not share his views have not resulted, as far as I am aware, in an increase in public vaccination rates in the US. Given that fact it is difficult to see why he engages in such childish, unprofessional behavior other than one reason:  he enjoys making, he takes pleasure in making,  such attacks. There is only one person who has degraded Gorski's credibility to speak on autism issues and that person is "Dr" David H. Gorski himself. 

Posted in , , , , , , , |

2 Harmful Acts: Autism Hate Letter And CHEO Removing Autistic Child With GDD From Early Intervention Program


The notorious autism hate letter that targeted an Ontario family and their autistic child has sparked horror and outrage around the world.  As the father of a 17 year old son with severe autistic disorder, profound developmental delays and tonic-clonic (grand mal) seizures I recoiled when I heard the news of this hateful act and I believe I have some understanding of  how the family felt and hope they are handling it as well as possible.  I suspect that the person or persons responsible for this act are now fearful that they may become publicly identified. Why the person felt it necessary to commit such an act is a mystery to me. I am happy to see that people around the world have responded with condemnation of the letter.

At the same time I am disappointed with the lack of reaction to the decision by the Children's Hospital of Eastern Ontario to write off an autistic child with "global developmental delay" by removing him from an early intervention program.  Call it what you want, justify it as you please, but the decision of the CHEO will have a real impact on the child with severe challenges by removing him at a critically important point in his life from the only solidly evidence based intervention for persons with autism and intellectual disability, "global" or not.  

Many have speculated about the mental health status of the author of the notorious autism hate letter. The harmful CHEO decision though was made by people whose mental health status is not in doubt, people who know what harm they have done to a child very much in need of their help, people who obviously lack compassion and concern for the well being of the autistic child with "global developmental delay" that they do not want darkening the "outcomes" profile, or assessments,  of the services they offer. 

A hate letter and a refusal to help.  Both are harmful. Neither can be justified.

Posted in , , , , , , |

Children's Hospital of Eastern Ontario (CHEO) Writes Off Child With Autism AND Global Developmental Delay (Intellectual Disability)


CHEO: No Teddy Bears & No Autism Program 
for Severely Challenged Children 

The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

Posted in , , , , , |

Autism Severity: Verbal Communication Doesn't Count? Crows Say Otherwise!


Photos by Harold L Doherty

One of the more irrational features in some autism discussions is the claim that being non verbal is not a significant indicator of autism severity.  Anyone who thinks that  verbal communication is not a significant factor in daily functioning is fooling themselves.   Communication is important for humans as it is for birds.  Crows are often reputed to be the smartest bird species and YouTube abounds with clever activities of crows. Anyone who has walked in areas populated by these very smart birds has heard the loud oral communication that goes on between these marvelous, high functioning creatures.  

As with crows, so too with people, oral communication is important in daily functioning and the absence of oral communication abilities is a serious deficit in daily functioning.  My son has severe autistic disorder and limited communication.  His lack of communication ability seriously limits his everyday life.



Posted in , , , , |

The Damaging Impact Of Seizures On Individuals With Autism


Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site.  I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders.


The Damaging Impact Of Seizures On Individuals With Autism

Newark Valley, NY, February 15, 2013 – Many of us know someone whose family is dealing with autism; once considered rare, now 1 in 88 children in this country are diagnosed with an Autism Spectrum Disorder (ASD).

Silently Seizing:  Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders (AAPC Publishing) by Caren Haines, RN, and valuable input by Nancy Minshew, MD, deals with the overwhelming challenge for those living with silent seizures. Many are confronted by anger and falsely accused of disorderly conduct, indecent exposure and drug abuse; while some are even unfairly arrested because the bizarre actions exhibited during a seizure have led to frequent misdiagnosis, medical mismanagement and, in the worst case, commitment to a mental institution.

Because they are difficult to diagnose, or due to a lack of awareness and understanding, as many as 30% of all children and young adults with ASD may have undiagnosed seizure disorders. Silently Seizing is a breakthrough book that explores what most doctors won't tell you – that often the symptoms of autism are caused by seizures, undetectable with standard diagnostic tools.

At age 2, the author’s son was diagnosed with autism. By the time he was 12, his diagnosis didn't account for his uncontrollable aggression, the acrid smells that lingered in his mind and the odd voices that screamed at him from inside his head. By the time he was 18, his out-of-control behavior mirrored a mood disorder with psychotic features. Silently Seizing begins with a close-up look at this family's journey and examines a disorder that cannot always be identified in a clinical setting.

As a registered nurse, Caren Haines relied on her training to help her decipher her now 24-year-old autistic son’s perplexing behaviors. Based on knowledge gained from years of intensive research and information from top researchers in the field of autism, she is helping families become free from the debilitating symptoms of silent seizures and psychosis.

Haines’ says, “Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.”

Backed by up-to-the-minute research, Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders is a must-read book that includes sections describing autism, the seizure-autism connection, tips for diagnosing and treating seizures, as well as how to better understand children's behavior. It acts as a virtual guide to help parents navigate through this complex and mystifying disease. For more information, please visit: www.bit.ly/Rb2WBW.

Caren Haines is also co-author of Georgia, The Flying Dog, a children’s book that explores the concept of unconditional love and acceptance of our differences.

###

Established in 1999, the mission of AAPC Publishing is to be the first source for practical solutions related to autism spectrum and related disorders. AAPC Publishing is an independent publisher, targeting professionals and parents alike. AAPC Publishing strives to offer publications at affordable prices so that important resources are available to anyone with an interest in the autism spectrum.

MEDIA APPEARANCE:

Caren Haines, AAS Nursing, R.N. - Presentation and Book Signing Event at the 2013 Southeastern “Across the Spectrum” Conference - Autism/Asperger Conference and Expo

When:  February 28th, 2013 - Ms. Haines' presentation is from 11:00 am – 12:15 pm; immediately following she will be at the AAPC booth signing books.

Where: Gwinnett Convention Center - www.gwinnettcenter.com
               6400 Sugarloaf Parkway
               Duluth, Georgia   30097

ADDITIONAL INFORMATION: Hosted by: Georgia Autism Conferences and Exceptional Ed Events.  Georgia Autism Conferences strives to meet the needs of the Georgia Autism community by providing quality seminars and conferences throughout the state on topics related to Autism Spectrum Disorders.

Posted in , , , , , , , |

Questioning Answers - An Excellent Autism Research Blog


My favorite blog dedicated to autism research is Questioning Answers, by researcher Paul Whiteley,  and I  recommend it for anyone interested in the subject.   Whiteley  presents autism research information in a manner that can be digested by this humble autism dad and is not condescending.  The content is broad, balanced and clear in its coverage of autism research subjects.  Whiteley displays no obvious bias,  (not obvious to me anyway),  in his comments which are always informative.  The QA blog regularly focuses on subjects that will be of interest to parents such as yesterday's Antipsychotics, autism and core symptoms. 

Whiteley describes his blog and his interest in autism and other research on his blog site profile:

"I have been involved in autism research for more years than I care to remember. The Questioning Answers blog is a place to describe and discuss various research into autism spectrum and related conditions. My Gutness Gracious Me blog is for discussions on various gastrointestinal research. I make no recommendations, I am not giving any medical advice, I am not formulating any specific opinions and do not want to get into any ethical, political or religious debates. I am not trying to change anyone's opinions, views, beliefs or anything else. These are purely blogs about science and research in autism and a few other interesting things. Any posts I make are my own opinions and not reflective of any organisation I am affiliated to. Keep in mind that science deals with probabilities not absolutes."

I follow Questioning Answers, read it regularly, and follow Whiteley's Twitter updates @QuestAnswers as well.  In my opinion Whiteley's blog profile self description is accurate and honest.  On Blogger and on Twitter Questioning Answers is a valuable  resource and I highly recommend it for anyone interested in autism disorder research.

Posted in , , , |

FDA Approved Stem Cell Autism Treatment Preliminary Study


I was surprised to see that a preliminary study of stem cell treatment of autism disorders is proceeding with FDA approval in the United States.  Stem Cells as possible treatments for autism have been mentioned for some time but have been subjected to disparaging commentary for several reasons including the usual anti cure attacks from Neurodiversity self interest groups. To see a preliminary study actually examining a possible source of treatment and cure for autism disorders is startling.  To see such a preliminary study receive FDA approval and thereby receive some protection from the anti cure autism extremists and self anointed protectors of the one true science at Respectful Insolence and similar sites is almost shocking.

Philly.com carries a HealthDay article by Mary Brophy Marcus, Could Stem Cells Treat Autism? Newly Approved Study May Tell  which indicates that: 

"Thirty children with the disorder, aged 2 to 7, will receive injections of their own stem cells from umbilical cord blood banked by their parents after their births. All of the cord blood comes from the Cord Blood Registry, the world's largest stem cell bank. Scientists at Sutter Neuroscience Institute, in Sacramento, Calif., said the placebo-controlled study will evaluate whether the stem cell therapy helps improve language and behavior in the youngsters."

The article  is careful not to over hype the study emphasizing that although it is a well designed study it is still a preliminary study which will in effect help decide whether further such studies concerning stem cell treatment of autism are warranted and that it is very early in this process.  The article also points out that there are mixed views  with some researchers being skeptical about the value of stem cells in treating autism. 

The cautions expressed are  helpful to my mind.  Those who oppose research that might lead to knowledge of autism causation, or to treatments and cures will seize on any excuse to attack and derail such research.  The disciplined, professional approach will help ward off such attacks.  In the end we should ALL want proper procedures, proper protocols to be followed to ensure that ANY results, positive, negative or neutral to anyone's perspective can be relied upon.

Personally, I am very happy that there is actual  research being done, in proper fashion, by credible professionals, under appropriate authorization aimed at finding treatments and cures for autism disorders. After years of  pointless, meandering,  autism research it is encouraging to see researchers who still live in the real world, who do not view parents as the enemy, and who realize that despite the protests of a few very high functioning persons  autism disorders are very debilitating, limiting and even dangerous for many who suffer from them.  Autism disorders require treatment as advocated by parents seeking treatment and cure for their children and for those who suffer from them and want treatment and cure for themselves.  Let the research be done and be done properly. 

Posted in , , , |

All Autism Meltdowns Are Not Panic Attacks

On Twitter in the past 24 hours the questionably named Thinking Persons Guide to Autism does what it often does: distributing unproven, non evidence based, opinions as representing all there is to know about autism.

On this occasion the TPGA Re-Tweeted one person's opinion about meltdowns; offering the less than carefully thought out over simplification that autistic meltdown are panic attacks not tantrums. The problem with this statement is that it oversimplifies what is often, at least for my severely autistic son, a very complex behavior. With the concluding remark the "Thinking" Persons Guide To Autism then encourages others to RT this oversimplified, incorrect notion that all meltdowns are  panic attacks:

"
RT .....  Autistic meltdowns are panic attacks, not tantrums. Pass it on.  "


My 16 year old son is severely autistic. He is also assessed with profound developmental delays. His meltdown behaviors are complex at any time. His meltdowns are not all triggered by the same events. Some appear to be frustration based in terms of the inability to do ... or to stop doing something when he obsesses with something like a Little Einstein video. Some times his meltdowns appear to be triggered by internal physical discomfort of various sorts. Some times they appear to be related to seizure activity. 

I am talking at this point only about my own severely autistic son not about other persons with autism disorders whether they be severely autistic with limited communication skills or whether they are High Functioning Neurodiversity activists promoting their perception of their autism condition as the universal reality for all persons with autism disorders.

I can not, and do not,  say that ALL persons with autism disorders experience meltdowns in the same way or for the same reasons as my son.  What I do say is that the person involved with the original tweet and the Thinking Persons Guide To Autism can not say that my son's meltdowns are always panic attacks.  

My son's  complex meltdown behaviors are just not that simple..... pass THAT on please!

Posted in , , |

Adults with Autism Disorders Not on the Political Agenda In Nova Scotia or New Brunswick


Conor at Black Rock on the Minas Basin, the eastern extremity of the Bay of Fundy, shared by New Brunswick and Nova Scotia, and home of the highest tides in the world.  NB and NS also share a lack of commitment to helping autistic, particularly severely autistic,  youth and adults.

Nova Scotia is receiving some recognition for improvement in services for children with autism disorders on the one hand but is also criticized for leaving adults and older children with autism behind.  The situation is not unique to Nova Scotia.  

New Brunswick made significant gains in provision of preschool and school services for autistic children during the Lord and Graham administrations although those services are now slipping away under the Alward-Carr-Porter administration. Autistic youth and adults, however, have not made any substantial gains at all during the Lord, Graham or Alward terms. No progress has been made in developing a modern facility with professionally trained staff for the most severely affected by autism disorders.  The group homes are staffed with personnel who lack training in autism.  

The story is similar in Nova Scotia where adults with autism, like those in New Brunswick, are simply dumped in psychiatric facilities with populations with a variety of mental health disorders:

""I'm happy that the people coming up have the resources I didn't have," said Barbara Gillis, whose 21-year-old son, Paul, is currently institutionalized with people suffering from a range of problems that don't include autism. Gillis, a single mother from Halifax, said she's been fighting to get her son into a properly supported environment to no avail. "What about the young adults that have already come up and didn't have these resources? There's a whole population out there with nothing."

Cynthia Carroll, executive director of Autism Nova Scotia, said there is currently no transition support for young adults leaving high school and there is a "crisis level" lack of residential support for adults as they get older. "They really need to start looking at services and supports for adults right across all government departments," said Carroll.
Health Minister David Wilson said with current budget restraints the province feels it can do more by targeting autistic children at an earlier age. However, he conceded more has to be done to improve support programs for older children and adults living with autism. "There's still work to be done," Wilson said. "We've got to continue to look at ways to support individuals young and old who have autism.
The only promises from politicians that count however are firm and clear  commitments to take specific actions within an identified time frame.  The Nova Scotia Health Minister's rhetoric about adult autism support amounts to "not today but maybe tomorrow".   You don't have to be a political scientist  to know the value of such promises. 

Posted in , , , |

Autism Is Genetic Eh? Really?


Autism, it's gotta be genetic, even if we can't see the evidence

No one disputes that autism has a genetic link or links somewhere, now if only we can find it ............  or them.

"Researchers say they have identified gene mutations that contribute to autism in three separate studies. The mutations identified were rare and aren’t necessarily present in the parents, only the offspring, which has made finding them difficult for scientists.     [Emphasis added - HLD]

“It just goes to show how complex the genetic architecture of autism is,” says Thomas Lehner, chief of the NIMH Genomics Research Branch, which funded one of the studies and helped to create the Autism Sequencing Consortium. Together, the studies allow scientists to estimate for the first time that some 500 to 1,000 mutations are likely involved in autism, Lehner tells the Health Blog. Abstracts for the studies, which were published in Nature, can be found here, here, and here. 

The work, conducted by three separate research groups on independent patient samples, also confirms earlier research that older paternal age appears a risk factor for the condition."

Wall Street Journal Health Blog, Complex Genetic Mutations Contribute to Autism, Studies Say

Notwithstanding the lack of any specific identifiable genes directly connected  to autism disorders researchers continue to push their beliefs that autism is primarily genetic.  Actually what they are really saying is autism is a disorder found in humans with different genetic makeups for which .... however ... there is no need to devote research dollars to conducting serious environmentally focused autism research.  After all if man made toxins are involved in any way in causing or triggering autism disorders then presumably corporate profit making ventures could be put at risk.  Better to mention paternal age again and invent a new genetic paradigm to explain why, notwithstanding the lack of any real evidence, we have to believe, we must believe, that autism is genetic.  Profits depend on us being devout in our "autism is genetic" faith.  Oh and by the way autism is not really rising despite changes in estimates, in less than two decades from 1 in 500 to 1 in 88.  

The explanations for the failure to identify specific genes connected to autism are beginning to sound funny.  Or they would be funny if autism research wasn't a serious matter for those who are, or whose children are, severely impacted by autism disorders. 

While parents and researchers calling for more environmentally focused autism research are demeaned or, at best, ignored, the autism research community by and large remains unwavering in its devoutly held faith that autism is, autism has to be, genetic.

The word from the autism research community remains the same: Carry on regardless.  Carry on regardless of whether we see any evidence to support the autism is genetic belief.

Posted in , , |

Telegraph-Journal: New Brunswick Public Education Must Be Inclusive and Flexible



A New Brunswick Telegraph-Journal June 16, 2012 editorial, reprinted in its' entirety below, has called for a flexible model of inclusion for New Brunswick public education.  The editorial references education policy analyst Paul Bennett who gave a presentation Thursday at the Atlantic Human Rights Centre conference on inclusive education.  

---------------------------------------------------------------------------------------------

EDITORIALS

BE INCLUSIVE AND FLEXIBLE




TELEGRAPH-JOURNAL
EDITORIAL

It is imperative that public education be accessible to all students. While the Alward government’s $62 million investment in new resources to support inclusion should help, critics say the province’s vision of inclusion itself needs to change.
One of those constructive critics is education policy analyst Paul Bennett. Mr. Bennett gives New Brunswick high praise for its commitment, but he does not believe equal access can be met within the walls of a single classroom. We’re inclined to agree.
The one-classroom model of inclusion cannot meet the needs of all students, as countless parents of children with Autism Spectrum Disorder and severe dyslexia can attest. Why not acknowledge that hundreds of families are not being well-served, and open the door to private schools or transition programs, funded by provincial vouchers, as Nova Scotia has done?
This would give parents greater choice in their children’s education. It would also serve as a better incubator of innovative and effective education practices than public schools can provide, while still being accessible to all.
The education department seems determined to train more teachers who are interested in special needs instruction. Given the low performance of New Brunswick schools generally, though, we’re not hopeful that New Brunswick can train its way out of this problem.
The average quality of schooling in New Brunswick is among the poorest in Canada. It is unlikely that the turnover in teachers who are better trained will occur fast enough to meet the needs of average students, let alone those who require specialized instruction.
Wouldn’t student needs be served better by permitting the creation of new schools and programs specifically for students with special needs, staffed by professionals who specialize in this area of education?
These schools would not replace classroom inclusion, but augment it by providing alternatives for those students whose needs are greatest.
In Nova Scotia, parents already have access to private, independent special education schools. Since 2004, when the Nova Scotia Tuition Support Program was created, the provincial government has even provided short-term funding for students to attend designated special education private schools, with the goal of transitioning back into public schools at a later date.
We are proud to live in a province which has affirmed that all students have an equal right to education. Surely it is not a big step to admit that to achieve this equality of opportunity, some special needs students will require resources outside the standard classroom.

Posted in , , , , , |

Autism leader helps UNB remain at forefront of autism intervention training


The University of New Brunswick has engaged a renowned expert to examine best practices in autism treatment.
Dr. David Celiberti is president of the Association for Science and Autism Treatment. His report, commissioned by UNB’s College of Extended Learning (CEL), examines program quality indicators already in place in other jurisdictions. The findings will be used to provide quality assurance for UNB’s program and to help UNB remain a leader with its Autism Intervention Training program.
“At UNB’s College of Extended Learning, we have great programs in place,” said CEL Executive Director Lloyd Henderson. “The methodology taught in our program is an Established Treatment as per National Autism Centre’s (NAC) standards.”
The NAC published a National Standards Report which classifies autism intervention treatments in a range from Established (known to be effective) and Emerging (some evidence of effectiveness), to Un-established (no sound evidence of effectiveness) and Ineffective (having no beneficial effects).
“We want to continue to lead in this area by taking a global approach, examining best practices, and making sure we continuously improve to offer the best intervention training possible. We monitor emerging treatments and will incorporate them into our programs if and when they are deemed established,” said Henderson.
“Autism treatment providers and program administrators should be required to report and justify why they are bypassing established treatment,” Celiberti said, in his report. “Parents should be educated and fully informed about which aspects of their child’s treatment are comprised of established treatment and which are not.”
The findings in the report will be used to establish a protocol for the CEL’s training program. It will also be made available to those involved in the administration and support of autism programs across the province and throughout Atlantic Canada.
“In light of the overwhelming body of growing intervention methods that parents and professionals are presented with on a daily basis, UNB’s intentions in undertaking this research project were to identify evidence-based proof of the support methods being used to treat children with autism,” Henderson said. “Thanks to Dr. Celiberti, we now have the information we need and are examining our programs to see if there are areas we can continue to improve.”
For more information on UNB’s program, or to read the report, visit: www.unb.ca/cel/intervention/index.html

Posted in , , , , , |

Severe Autism Reality: Autistic Cases 'Autism Experts' Run From

Kim Oakley and her family are not researchers studying high functioning autism and trying to convince the world that autism is beautiful.  They are not ill informed mainstream "journalists" looking for a feel good story about autism.  They are a  family caring for a family member severely affected by an autism disorder. They are courageous in caring for Kim Oakley's son and they are courageous again for sharing their struggle honestly with a world that doesn't have the faintest clue about the realities of severe autism disorders, a world misled into thinking that autism is an advantage not a disorder. The following video, Autistic Cases 'Autism Experts' Run From',  by Kim Oakley, portrays severe autism as experienced in her home ... straight up and honestly:



This father of a son with severe Autistic Disorder applauds Kim Oakley and her family for caring for their son despite the challenges and for trying to tell the world about the realities of severe autism disorders and the challenges they present for those who suffer from them and those who care for them.

Posted in , , , , , |

Autism in Russia: Pravda Misrepresents Asperger's as Autism


Like its mainstream media counterparts in the US and Canada the Russian news service Pravda is busy misrepresenting Asperger's as Autism.  In Autism: Life full of struggle and success there is mention of Asperger's as "an" autism disorder.  There is also acknowledgement of some of the challenges faced by persons with autism. But there is no mention of those who CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp  described as the "vast majority" of those with actual Autistic Disorder diagnoses; those who have autism and intellectual disabilities. The article read as a whole, including the title,  portrays those persons with Asperger's, and persons "with some traits of autism and Asperger's" who have found employment with companies like Aspiritech as representative of persons with autism:

The son of the founder Moshe Vittsberga at some point had problems finding work due to Asperger Syndrome diagnosis. For this reason, the Aspiritech undertook to help people with autism.
 According to specialists, work with computers is well suited for autistic individuals. In addition, many high-end programmers are people with certain traits of autism or Asperger syndrome.

Among professions preferred for autistic individuals are accounting, librarianship, archival work and drawing, and art. Autistic individuals are good at archeology, paleontology, and museum work.
Some people with autism are good at jobs involving visual thinking - computer-aided design, architectural modeling, industrial design, etc.


For example, in 2008, a fellow of the Massachusetts Institute of Technology Wendy Jacob founded a studio where she worked with autistic individuals to create radically new art and design solutions in the field of interior design and the design of everyday objects specifically for people with autism spectrum disorders. This is the beginning of a niche market.


Autistic individuals are also good at work associated with fulfilling certain actions at certain times. Autistic individuals do not need a team and can work quite effectively in isolation.
However, work related to rapid processing of information in short-term working memory is not suitable for them. They should avoid such areas as history, political science, business, philology, or higher mathematics.

Posted in , , , , , , , , |

UK's National Health Service Misrepresents Autism



The DSM-5 is formalizing a shell game which has seen Asperger`s substituted for Autism in the mainstream media for many years. The most recent media example comes courtesy of the UK government`s National Health Service which, while referencing Asperger's as one form of autism, focuses on it as the most well known form of autism and focuses on the challenges facing persons with autism without discussing the very serious challenges facing those with actual Autistic Disorder.  There is no mention of those with autism and intellectual disability or the fact that the vast majority of those with actual Autistic Disorder suffer from intellectual disability. Autism, in this UK NHS release to the public is the autism of those with average and above average intelligence.  The UK NHS consciously excluded those with severe autistic disorder challenges from this public representation of the autism spectrum. 

No Intellectually Disabled allowed on the DSM-5 Autism Spectrum Disorder ... or on this UK NHS version of the autism spectrum. 

Understanding Autism -- Information on Autistic Spectrum Disorder by NHS Choices

LONDON, Sep 26, 2011 (BUSINESS WIRE) -- There are more than half a million people affected by autism (autistic spectrum disorder) in the UK.

What is autism?

Autism is a spectrum condition. This means that while all people with autism share certain difficulties, the condition affects them differently.

Autism is a serious and lifelong developmental disability. On its own, autism is not a learning disability or a mental health problem.

What are the symptoms of autism?

The symptoms of the condition are:

- Problems and difficulties with social interaction, such as a lack of understanding and awareness of other people's emotions and feelings.

- Impaired language and communication skills, such as delayed language development and an inability to start conversations or take part in them properly.

- Unusual patterns of thought and physical behaviour. This includes making repetitive physical movements, such as hand tapping or twisting.

Forms of autism

The best known form of autism is Asperger syndrome. People with Aspergers are often of average or above-average intelligence. They have fewer problems with speech than people with other types of autism, but may find it difficult to understand and process language. Some people are skilled in fields requiring logic, memory and creativity, such as maths, computer science and music.

Causes of autism

What causes autism is still being investigated. According to the National Autistic Society (NAS), there is strong evidence to suggest that autism can be caused by a variety of physical factors, all of which affect brain development There is also an evidence to suggest that genetic factors are responsible for some forms of autism.


Although there is no cure for autism, there are a range of specialist education and behavioural programmes (often known as interventions) that have proved effective in improving the skills of children with ASD.


Autism awareness


Awareness of autism is high, but awareness that Asperger syndrome is a form of autism is low. According to the survey commissioned by NAS 92% of surveyed people had heard of autism but only 48% had heard of Asperger syndrome.


For more information on autism, please visit our Living with Autism section of the NHS Choices website.


SOURCE: NHS Choices


Krystle Downie
Consumer Media & PR Specialist
020 7972 5675
krystle.downie@dh.gsi.gov.uk

Posted in , , , , |

Autism Reality Check: Autism Is A Neurological, ICD or DSM Diagnosable Disorder, Not a Joy or a Blessing

My 15 year old son is severely impacted by his Autistic Disorder. It presents real challenges for his ability to function in every aspect of his life.  He has an Autistic Disorder that manifests in his limited understanding of the world, in repetitive, obsessive behaviors, in self injurious behaviors to name only a few. He will have to live his life dependent on the care of others, every day for the rest of his life.  My son has an Autistic DISORDER diagnosis. My son is a joy but his autism is not a joy.  His autism is not a blessing. 

Some parents of children with autism disorders delude themselves and tell the world that autism is  a joy. In doing so they are misrepresenting the realities of their children's autism disorder.  People do not seek medical attention for their children, their children do not receive DSM or ICD autism spectrum disorder diagnoses, because of the joys or blessings in their children's lives. 

By all means parents, and high functioning persons with autism or Asperger's disorder diagnoses, write books, make public appearances, build a lucrative career as a parent of an autistic child or as an "autie" or an "aspie", blog and tweet away.  But please do not tell the world that up is down, that in is out, or that autism disorders are not disorders. 

Please do not misrepresent the realities of autism disorders.

Posted in , , , , |

What Passes for Autism Research?



A new "study" informs us that persons with Asperger's Disorder and High Functioning Autism  are more likely to be atheists. 

How does that help us understand the biological basis for autism disorders? How does that help us understand the causes of autism disorders? How does that help us find treatments or cures for a serious neurological disorder? How does that help us understand the lives of those severely affected by autism disorders who live their lives dependent on the care of others? 

Apart from the subject matter the study also excluded low functioning persons with autistic disorder, those with intellectual disabilities and those living in institutional care. The chart above distinguishes between NT "neurotypical" and ASD "autism spectrum disorder" which were all Aspergers and High Functioning Autistic persons. Apparently it is OK to excluded the large numbers of persons with autistic disorder who are intellectually disabled and/or low functioning when reaching conclusions about persons with autism spectrum disorders. 

Apparently anything can constitute "autism research"?

Posted in , |

Cure Autism? Absolutely!

Autism is a disorder. We need to find a cure, or cures, for autism disorders.

These simple points seem to escape those who perversely find joy in the fact that a child has an autism disorder. Equally irrational is the notion that society need not find a cure, or cures, for the various autism spectrum disorders. Autism, at least in its most severe manifestations, directly harms a person with autism when he or she engages in Self Injurious Behavior.  Autism has also taken the lives of those who wander away from home or place of care as appears so often in the news. Some of us have been very fortunate when our autistic children are returned to us safely. It is impossible for me as the father of a severely autistic 15 year old son to respect the opinions of those who argue against curing autism disorders.  That perspective, as I see it, is irrational at best and perverse at worst.

At Autism, Epilepsy and Self-Injurious Behavior Kim Oakley is a blogger who has previously posted a number of honest, informative Youtube videos showing her son's Self Injurious Behavior.  In the latest comment on her blog   Autistic behaviors, Antipsychotics and Angioedema: Warning she again addresses issues arising from SIB with an emphasis in this article on some medication side effects. Her son's SIB is described:

"Late June, 2011. My severely-autistic, non-verbal son had been smashing self in face and head for 3 days, despite numerous interventions to stop brutal self-injury. Protective gear was in place (karate helmet, Posey Mitts). Temporary restraints were ineffective (during this particular episode, he was so strong, broke out of restraints)."


In  Access to health Casdok of Mother of Shrek  has also written recently on her son's SIB:

"Drowning in a tidal wave. Rapidly repeatedly smashing his head hard onto a solid object trying to cause more pain to block out the pain he is already in - giving himself something to cling onto – to find his way back. This is what it looks like to me. A tidal wave of pain from what though – I don’t know. C needs investigations to rule out health issues. 


His desperate eyes boring into your heart silently screaming for you to help him. But you can’t always.


I wrote about this back in Feb. The words ‘critical ‘crisis’ ‘life threatening’ have all been used and yet C has only yesterday got to see the right Consultant who would prescribe meds and a referral to see a Neurologist. Meds might take yet another week – ‘as we are busy’."

Casdok, as I understand her writings, does not believe that autism should be cured. She is obviously a caring and dedicated mother but I can not pretend to understand how she can fight so hard to help her son deal with serious self injurious behavior on one hand, including seeking  medical treatment, and still oppose curing autism. 

Self injurious behavior and other serious challenges presented by autism are exactly what motivate the many parents of autistic children who do seek cures for their children. I wish Cadok and her son well.  I hope they do get the medical assessment  her son needs.  

For the sake of my own son, and others who are severely affected by autism disorders, I hope that the new trend in research toward understanding all of the possible causes of autism, and the decline of the autism is primarily genetic myth,  will also lead to more effective treatments and some day a cure for autism.

Posted in , , |

Glenn Thibeault's REAL National Autism Strategy



In the past 36 hours I have criticized CASDA's claims to be advocating for a National Autism Strategy and to be presenting a unified national autism voice.  Lawrie Mawlam of CASDA, a conscientious and courteous individual with whom I have had the privilege of talking in recent months,  has taken some objection to my criticism and I thank her for expressing her opinions so forthrightly.   I hope though that CASDA will consider the criticisms of their efforts before rejecting them defensively.  I also ask CASDA, and any one else purporting to advocate for a National Autism Strategy to consider and support the private members bills of Sudbury MP Glenn Thibeault. The two bills express a clear and coherent National Autism Strategy that would be great benefit to autistic Canadians and their families and that is consistent with the efforts by many Canadians seeking a REAL National Autism Strategy for many years before CASDA and its constituent elements began seeking a national approach to autism.

I recommend that CASDA, Conservative MP Mike Lake,  and all others seeking a real and meaningful national autism strategy support, and encourage their members of Parliament to support, Glenn Thibeault's private member autism bills as described on Mr. Thibeault's site:

"THIBEAULT RE-INTRODUCES AUTISM LEGISLATION


2011 06 15


OTTAWA – Today MP Glenn Thibeault (Sudbury) re-introduced two Private member`s Bills designed to assist individuals diagnosed with autism spectrum disorders.


The first Bill would amend the Canada Health Act to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognised treatments for individuals living with autism spectrum disorders.


The second would create a National Strategy for individuals living with autism spectrum disorders, therefore ensuring that these individuals would receive the highest level of care, regardless of which region of Canada they live in.


“Far too many Canadians and their families are coping with autism spectrum disorders without adequate support from any level of government” said Thibeault. “Together, these two Bills would ensure that all Canadians, irrespective of where they live, have access to the most appropriate forms of care and extended health services.”

“With negotiations between the provinces and federal governments on the Canada Health Accord starting in 2014, I am calling on the Government to implement the provisions of these bills to ensure that individuals suffering from autism spectrum disorders are properly covered by the Accord.”

Autism spectrum disorders are a spectrum of psychological conditions, including autism and Asperger’s syndrome, which are characterised by an impairment of social interaction, restrictive interests and repeated behaviours. Currently, around 1 in 200 Canadians – representing roughly 190,000 Canadians - are estimated to have autism spectrum disorders. Incidence rates have been on the rise over the past decade, with the prevalence rate in children estimated to be 1 in 165.

-30-

For further information, please contact:

Alex Bushell, Parliamentary Assistant (Glenn Thibeault): 613-996-8962 or glenn.thibeault.a2@parl.gc.ca"

Posted in , , , , , , |

Search

Swedish Greys - a WordPress theme from Nordic Themepark. Converted by LiteThemes.com.