SFARI blog article depiction of a resting “Autism” brain accompanying review of study employing only Aspergers subjects as representing “autism” for comparison with non autistic resting brains SFARI continues its agenda of misrepresenting high functioning autism/aspergers only studies as representing “autism”. It has published, on its blog page, several study reviews employing only high functioning autism or Aspergers subjects as “autism” studies, knowing that the “Autism Spectrum Disorder” is marked by substantial variation, complexity, heterogeneity. The World Health Organization, September 2013 indicated that 50% of persons on the “autism” spectrum also have intellectual disabilities. The fact that intellectual disability is (Read more…)
I have been trying to read, and understand, literature about autism disorders since my son was diagnosed with an autism disorder almost 16 years ago. (Many would undoubtedly suggest I have far to go in development of that understanding). In the last few years I have begun to try and read and learn more about epilepsy and seizures, largely because of my son’s apparent seizure activity confirmed by two classic grand mal seizures in the past 15 months. An article on recent Companion of the Order of Australia recipients, recognizing accomplishments in their fields of a number of Australians (Read more…)
The Simon Foundation Autism Research Initiative, SFARI, continues to represent studies involving only high functioning autistic participants to the public as “autism” studies. In the Children with autism have trouble recalling memories article posted January 3, 2014 SFARI reports as an “autism” study a study which excluded as participants the 50% of those with an Autism Spectrum Disorder who also have an intell5ectual disability (World Health Organization estimate, September 2013):
“Children with autism have trouble recalling memories
Laura Geggel 3 January 2014 Children with autism struggle to remember details of events from their own lives, reports (Read more…) . . . → Read More: Facing Autism in New Brunswick: SFARI Continues Misrepresenting High Functioning Autism Only Research As "Autism" Research
Emily Willingham argues that persons like my son, with severe autism disorder and intellectual disability, should remain invisible with the focus on those with “pure” autism and no intellectual disability
SFARI has done Emily Willingham a favor, allowing her to use their site as a platform to further her efforts to render invisible the realities of life facing those with severe autism disorders and intellectual disabilities. Willingham has no professional expertise in autism disorders on which to base her opinions. Nor, as the parent of a high functioning autistic child, does she have any personal, real life experience on which (Read more…)
As the father of a 17 year old young man with severe autism, intellectual disability and epileptic seizures I am very happy to read that 15 year old autistic boy Louis Martin was found safe in Montreal after being reported missing by his father (who also tweeted his son’s disappearance). Wandering is a very serious problem for persons with autism, particularly when they also suffer from “comorbid” intellectual disability. It is long past time that everyone including mainstream media, Hollywood, television and autism “experts” stopped glorifying those with exceptional talents and started presenting full, honest pictures of autism disorders. (Read more…) . . . → Read More: Facing Autism in New Brunswick: Great Autism News: 15 Year Old Boy With Autism And Intellectual Disability Found Safe
Conor Doherty sporting a big smile after a quick tickle shave adventure with Dad this morning Many famous “autistics” were not diagnosed until they were adults and have turned their diagnoses into good career opportunities: John Elder Robison, Michelle Dawson, Ari Ne’eman and Mr. Ne’eman’s colleagues, the fellow corporate trustees of the Autistic “Self” Advocacy Network. For these extremely high functioning “autistics” autism is merely a difference not a disorder and they object, some even demonize, parents who talk about autism DISORDERS and seek TREATMENTS and CURES for their autistic children. For my son, who unlike all of the aforementioned, (Read more…) . . . → Read More: Facing Autism in New Brunswick: Severe Autism Disorders: Conor’s Autism Progress: Teeth Brushing and Tickle Shaves!
Autism Speaks has entered into a Research PACT to continue its focus on “pure autism“ (referred to in the PACT as core symptom autism), while ignoring 50% of the autism spectrum, those with intellectual disability (WHO, September 2013):
“Working together, the PACT team is developing a platform of preclinical tests to evaluate and compare new medications for the core symptoms of autism.“
Vivanti and his colleagues offered the term “pure autism” to refer to the tendency of autism studies to intentionally exclude subjects with autism AND intellectual disability:
“the question of the nature (Read more…)
Questions and answers about autism spectrum disorders (ASD) Online Q&ASeptember 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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: 50% Some WHO Autism Awareness: Autism and Intellectual Disability 50%
“Dr. Lynn Waterhouse @autismideasfail 6 Sep http://bit.ly/17WbZVi #autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX”
The above Tweet by Dr. Lynn Waterhouse, author of Rethinking Autism: Variation and Complexity, who also worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism, should be read by any existing DSM5 committee members charged with developing modifications to DSM-5 diagnostic criteria. The DSM-5 has doubled down on the failed approach of simplifying autism contrary to solid evidence and research. Dr Waterhouse’s (Read more…) . . . → Read More: Facing Autism in New Brunswick: #autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX
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 (Read more…)
“Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date1. Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy2. Most studies peg its prevalence among people with autism at 30 percent. The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children (Read more…) . . . → Read More: Facing Autism in New Brunswick: SFARI Highlights Serious Risk of Epilepsy for Young Children and Teens with Autism and Intellectual Disability
Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of autism spectrum disorders.
Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism (Read more…)
Excellent panel discussion by the La Trobe University Olga Tennison Autism Research Centre (OTARC) with Dr. Giacomo Vivanti, Dr. Cheryl Dissanjake and Dr. Cynthia Zierhut. The panel comments on the cultural representation of autism as genius in movies such as Rain Man and television series such as the Big Bang theory. Dr. Vivanti talks about autism research tendency to focus on high functioning autism perceived by many autism researchers to constitute “pure” autism research. He calls this bias into question as non evidence based, circular reasoning. There is no legitimate basis to separate autism and intellectual disability as “comorbidity”. (Read more…)
Rapper J. Cole has offered what appears to this observer to be a very sincere apology, one offered without qualifications and one which actually offers a breakthrough for those who, like my son, suffer from severe autism. Unlike most prominent autism advocates rapper J. Cole actually acknowledged the existence of, and included in his apology, those at the severe end of the autism spectrum. Many autism advocacy organizations and “self” advocates routinely denigrate anyone who mentions severe autism disorders. Television series, movies and feel good mainstream media rarely acknowledge the severe, low functioning end of the autism spectrum. Rapper (Read more…)
Anyone described as “having autism” or “being autistic” would have received an autism disorder diagnosis pursuant, in all likelihood, to either the DSM or the ICD
Dear Anna Kennedy
My 17 year old son Conor who was diagnosed 15+ years ago with “autistic disorder” (now autism spectrum disorder) and profound developmental delays ( a euphemism for intellectual disability) is truly a gift. Conor brings great joy to our lives as shown on the sample pictures that follow. While Conor is a joy, however, his autism disorder is not, however, a joy. Nor is his autism disorder a GIFT. Conor’s (Read more…) . . . → Read More: Facing Autism in New Brunswick: Dear Anna Kennedy: Please Stop Misrepresenting Autism, Autism Is A Health DISORDER NOT a Gift
In yesterday’s commentary Autism Speaks Joins Drake And J.Cole In Insulting 40% With Autism AND Intellectual Disability I criticized Autism Speaks for stigmatizing persons with Intellectual Disability, particularly the 40% of persons on the autism spectrum with ID, the 40% that Autism Speaks seldom acknowledges in its promotions and literature. I received the comment, posted above, from BLOOM – Parenting Kids With Disabilities editor Louise Kinross that expresses my issue with Autism Speaks’ approach to intellectually disabled members of the autism spectrum better than I did. It would do Autism Speaks and the autism community it (Read more…) . . . → Read More: Facing Autism in New Brunswick: Sound Advice for Autism Speaks
Autism Speaks has joined rappers Drake and J. Cole in insulting persons with Intellectual Disability particularly the 40% of the autism spectrum with intellectual disability. The rappers had published song lyrics referring in an insulting manner to persons who are “autistic, retarded”. Autism Speaks did not simply criticize the rappers for denigrating persons who were autistic or intellectually disabled. Autism Speaks criticized the rappers for perpetuating negative stereotypes and for failing to recognized the many persons with autism and “other” disabilities who have enjoyed great success and talents. Presumably it would have been OK in the view of Autism (Read more…)
I have never subscribed to the assumption that Intellectual Disability is a co-morbidity as described by the authors of a new study examining Intellectual Disability in Autism: (unrelated in etiology and causality from the ASD itself) I have been frustrated by the historical tendency of ”autism” researchers to exclude intellectually disabled autistic subjects from their research studies. I am very disappointed with Dr. Lord, Dr. Swedo, Dr. King and other APA members for their efforts to further the dissociation of Intellectual Disability from Autism Spectrum Disorder (s) in the DSM5. I have always believed, as the father of (Read more…)
In “The new definition of autism” CBC News provides detailed descriptions of autism as represented by the five pervasive developmental disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5. With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment. The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism, the substantial numbers of persons with autism (Read more…)
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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Autism and Seizures: Conor’s Second Grand Mal Seizure (That We Know Of)
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 (Read more…)
A study presented at the IMFAR 2012 conference this spring in Toronto, Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilies, seems to provide evidence contradicting the widely propagated assertion that the DSM-IV era has seen autism incorrectly diagnosed as a substitute diagnosis in many cases of intellectual disability. Roeyrs and Thys actually conclude that autism is UNDER diagnosed in a large study of persons with intellectual disability. If the study results are confirmed it seems likely the harmful impact of the express, and intentional, targeting for exclusion of severe intellectually disabled from the DSM5 autism spectrum . . . → Read More: Facing Autism Symptoms in New Brunswick: UNDERdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities
If you believe IACC Neurodiversity advocates present and past, Ari Ne’eman and Matthew Carey, autism is not something that should be cured. You won’t see much about the harsher aspects of life with autism disorders if you read their writings. In their view autism is nothing more than a different way of thinking, not a … disorder … or group of challenging symptoms for which cures are needed.
No, the enlightened Neurodiversity thinkers who are selected to represent the mythical “autism community” at the IACC see autism in the image of the members of the ASAN Board of Directors, . . . → Read More: Facing Autism Symptoms in New Brunswick: The Harsh Reality End of the Autism Spectrum
The Interagency Autism Co-ordinating Committee (IACC) plays an important role in autism research and understanding. It is unfortunate that sitting as a public member of the IACC is lbrb blogger Matthew J. Carey, a member of the Neurodiversity movement which, at its core (1) portrays autism as a different way of thinking not a disorder or disability and (2) belittles efforts to seek cures for autism. His official bio posted on the IACC web site emphasizes his considerable background as an industrial researcher and his deep commitment to “communicating the importance of getting the science right for autism“. The . . . → Read More: Facing Autism Symptoms in New Brunswick: IACC Neurodiversity Member Matt Carey Single-Handedly Reduces Intellectually Disabled To A "Small Segment of the Autistic Population"
“Autism Spectrum Disorder Must meet criteria A, B, C, and D: A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:” Autism annual reviews have been published by a number of sources most of which ignored or mis-characterized the most important autism event of 2012. The most important event by far and the one with the most negative implications for those who actually suffer from autism symptoms was the APA approval, on Saturday, December 1, just before the holiday season, of the DSM5 . . . → Read More: Facing Autism Symptoms in New Brunswick: Autism 2012: Disaster for the Autism Spectrum’s Intellectually Disabled