Showing posts with label low functioning autism. Show all posts

Neurodiversity Author and Ideologue Steve Silberman ALMOST Acknowledges Low Functioning vs High Functioning Autism Reality


Neurodiversity autism author and ideologue Steve Silberman ALMOST acknowledged the common sense reality of differences in autism function levels but at the last minute he turned and walked away once again. In an article at Scientific American  titled Contributors Lee Billings and Steve Silberman talk autism, space travel, and extraterrestrial life (Part 1)  Silberman talks briefly about the realities of low functioning autism and how the challenges they present COULD lead one to conclude that there really are differences in functioning levels. Then he abruptly struts away and denies those same differences. He, once again, takes the decidedly Non-Scientific American  ideological perspective that parents and clinicians who recognize differences in functioning levels are simply wrong and that the high functioning autistic persons he knows and adores  who claim that HFA and LFA are meaningless labels are right:

Lee: Is there any emerging consensus about the wide variations in the severity of autism?
Steve: I would say that one emerging consensus is that the idea that there is a single, unified condition called “autism” is little more than a useful fiction. This fiction allows us to address certain similarities across a very broad and diverse spectrum of conditions, and enables government agencies and insurance companies to offer services based on a single box labeled “autism” that can be ticked on a form. But that monolithic notion doesn’t reflect the actual reality, which is much more complex. What we call autism is probably a cluster of many different conditions, rooted in a wide variety of genetic predispositions and epigenetic triggers, which exhibit themselves in many different ways, including variations in severity.  The truth is that there are many “autisms,” rather than one “autism.”
Lee: Could you talk more about the problematic distinctions between “low-functioning” versus “high-functioning” people with autism? What alternative is there to this classification structure?
Steve: Obviously, the language of “high-functioning” versus “low-functioning” is very tempting to use, and most people—that is, parents and clinicians—use it. If you have a kid who can’t talk or use the toilet, rarely seems to connect with the people around her, appears to be profoundly intellectually disabled, and bangs her head against the wall, it seems appropriate to classify her as “low-functioning.” On the other hand, if you have a guy with an Asperger diagnosis who has a job writing code or fixing luxury cars and has a wife and kids of his own—it seems easy to call him “high-functioning.” But the autistic adults I know hardly ever use those two terms, because they know better. Even people who are classified as high-functioning—like John Elder Robison and Temple Grandin—really struggle with some aspects of life that most neurotypical people don’t have to struggle with.  At the same time, some research into “low functioning” individuals in recent years indicates that they may have much more going on inside them than is usually visible from the outside. That’s one reason why the development of alternate forms of communication for people who have difficulty with spoken language—and we’re talking about iPads here, an “assistive technology” that many neurotypicals find indispensable these days—is so important. I’ve interviewed some autistic people who would be written off as “low-functioning” by most people, but once they get an iPad with text-to-speech apps in their hands, they become as eloquent as poets.
Personally, I avoid using the terms “high-functioning” and “low-functioning” because I think they’re both misleading. The term “high-functioning” makes certain kinds of challenges invisible, while the term “low-functioning” makes certain kinds of intelligence and capability harder to see. Many “low-functioning” kids will eventually learn self-care skills and be able to communicate with some form of assistive technology. Once they can make their thoughts visible to others, you find out that they have very rich inner lives, and were always listening to what was being said around them. We need to find out what has worked in the lives of people like Robison, Grandin, and Stephen Shore—a guy who was considered low-functioning when he was young, and whose parents were told to put him in an institution. He’s now a professor at Adelphi University, and a delightful person. Once we find out what has worked for them, we can apply those lessons to the next generation of autistic people. That’s why Jenny McCarthy’s claim that “there were no autistic adults, it’s all now” is not just wacky and incorrect, it’s dangerous, because it deprives the huge population of autistic kids of visible mentors and role models whom they can learn from."

Silberman's claim is that because some persons once considered low functioning went on to communicate and excel in life it is therefore wrong to distinguish between low and high functioning autism disorders. This claim is absurd and lacking in common sense. As he has stated some persons with LFA have difficulty with the most basic functions in daily life like toilet training. Some engage in serious self injurious behavior. He could also have mentioned the autistic adults who live their lives not with assistive technology but in assisted living in varying levels of residential care including full time 24-7 institutional care. The realities of life for these people by any common sense measure are fairly described as low functioning compared to the very high functioning Friends of Silberman club ...  the Robisons, Grandins and Shores. 

Steve Silberman either lacks common sense and can not distinguish between these different functioning levels or he has simply chosen to turn and walk away from that truth in the interest of promoting his career and books as a leading author of the irrational ideology known as Neurodiversity. His public denials of the challenges, the more severe challenges facing low functioning autistic persons puts  him in the group of people who are obscuring public discussions about the natue of autism disorders and the needs of those who suffer from low functioning autism. 

I have visited Low Functioning severely autistic adults living in psychiatric hospitals. I have talked by phone with Michelle Dawson and I have met John Robison at the recent IMFAR conference in Toronto.  I have met very capable persons with High Functioning Autism and Aspergers here in New Brunswick.  These people are much higher functioning in their abilities to function in the real world than those living in residential and institutional care and Steve Silberman should know that. 

Shame on you Silberman.

Posted in , , , , , , , |

Major Autism Research Breakthrough: EEG Study Involved Classic Low Functioning Autism Subjects


Two thumbs up for Frank H. Duffy, M.D., of the Department of Neurology, and Heidelise Als, Ph.D., of the Department of Psychiatry at Boston Children's Hospital,  for conducting an autism study involving "classic" lower functioning autism subjects who have been excluded too often from autism research 
resulting in skewed autism research findings

A major autism research breakthrough has been reported in the Science Daily/PR newswire article Computer analysis of EEG patterns suggests a potential diagnostic test for autism. The article is copied in full following my commentary. 


The study is available online: A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typical controls – a large case control study.

The central finding of the study is reported to be the possibility that the researchers have found reliable EEG patterns to reliably distinguish between autistic children and neurotypical children as young as t wo years old.  Another radical aspect of this study though is that it actually used "classic" low functioning autism subjects. IMHO this in itself is a major breakthrough in "autism" research which has tended to exclude low functioning, classic autistic subjects.  I have highlighted in bold the comments by study researcher Frank H. Duffy which indicate the participation of "classic" autism subjects and the rationale for excluding high functioning autism and Aspergers subjects who tend to dominate (and skew) the existing literature because they are relatively easy to study.

BOSTON, June 25, 2012 /PRNewswire-USNewswire/ -- Widely available EEG testing can distinguish children with autism from neurotypical children as early as age 2, finds a study from Boston Children's Hospital. 

The study is the largest, most rigorous study to date to investigate EEGs as a potential diagnostic tool for autism, and offers hope for an earlier, more definitive test. 

Researchers Frank H. Duffy, M.D., of the Department of Neurology, and Heidelise Als, Ph.D., of the Department of Psychiatry at Boston Children's Hospital, compared raw EEG data from 430 children with autism and 554 control subjects, ages 2 to 12, and found that those with autism had consistent EEG patterns indicating altered connectivity between brain regions – generally, reduced connectivity as compared with controls. 

While altered connectivity occurred throughout the brain in the children with autism, the left-hemisphere language areas stood out, showing reduced connectivity as compared with neurotypical children, consistent with neuroimaging research. Findings were published June 26 in the online open-access journal BMC Medicine. 

Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications. 

"We studied the typical autistic child seeing a behavioral specialist – children who typically don't cooperate well with EEGs and are very hard to study," says Duffy. "No one has extensively studied large samples of these children with EEGs, in part because of the difficulty of getting reliable EEG recordings from them." 

The researchers used techniques developed at Boston Children's Hospital to get clean waking EEG recordings from children with autism, such as allowing them to take breaks. They used computer algorithms to adjust for the children's body and eye movements and muscle activity, which can throw off EEG readings. 

To measure connectivity in the brain, Duffy and Als compared EEG readings from multiple electrodes placed on the children's scalps, and quantified the degree to which any two given EEG signals—in the form of waves—are synchronized, known as coherence. If two or more waves rise and fall together over time, it indicates that those brain regions are tightly connected. (Duffy likens coherence to two people singing "Mary Had a Little Lamb" together. If they can see and hear each other, they are more likely to sing in synchrony -- so their coherence is high.) 

In all, using computational techniques, the researchers generated coherence readings for more than 4,000 unique combinations of electrode signals, and looked for the ones that seemed to vary the most from child to child. From these, they identified 33 coherence "factors" that consistently distinguished the children with autism from the controls, across all age groups (2 to 4, 4 to 6, and 6 to 12 years). 

Duffy and Als repeated their analysis 10 times, splitting their study population in half different ways and using half to identify the factors, and the other half to test and validate them. Each time, the classification scheme was validated. 

"These factors allowed us to make a discriminatory rule that was highly significant and highly replicable," says Duffy. "It didn't take anything more than an EEG—the rest was computational. Our choice of variables was completely unbiased—the data told us what to do." 

The researchers believe the findings could be the basis for a future objective diagnostic test of autism, particularly at younger ages when behavior-based measures are unreliable. Their most immediate goal is to repeat their study in children with Asperger's syndrome and see if its EEG patterns are similar to or different from autism. They also plan to evaluate children whose autism is associated with conditions such as tuberous sclerosis, Fragile X syndrome and extremely premature birth. 

The study findings complement those of another recent study at Boston Children's, led by informatics researcher William Bosl, Ph.D., and Charles A. Nelson, Ph.D., research director of the Developmental Medicine Center. That study looked at the complexity of EEG signals, another indirect measure of brain connectivity, and identified patterns that distinguished infants at increased risk for autism (having affected siblings) from controls. 

The current study was funded by the U.S. Department of Education, the National Institute of Child Health and Development, the Weil Memorial Charitable Foundation and the Irving Harris Foundation. 

Boston Children's Hospital is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Boston Children's research community. Founded as a 20-bed hospital for children, Boston Children's today is a 395 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Boston Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Boston Children's, visit: http://vectorblog.org. 

CONTACT: 
Meghan Weber 
Boston Children's Hospital 
617-919-3110 
meghan.weber@childrens.harvard.edu 

SOURCE Boston Children's Hospital 

Back to top 
RELATED LINKS 

Posted in , , , |

FOX News Autism Experts Worry About DSM5 Impact on High Functioning Autistic Children, No Concern for Low Functioning Autistic Children


FOX News has published a report, Some Experts Worried Over Revised Autism Guidelines, in which two autism experts, Dr. Keith Ablow, a psychiatrist and Fox News contributor, and Dr. Thomas Frazier, who treats children with autism at the Cleveland Clinic Children’s Hospital, express their concerns about the possible impact of the DSM-5`s new Autism Spectrum Disorder category on high functioning autistic children. They are concerned that some high functioning autistic children might lose their diagnoses, and access to autism specific education services, although the FOX report does not provide much detail on the basis for their concerns:

“These new guidelines would place an emphasis on preservative and repetitive behaviors – but many children who were originally diagnosed with autism may be reclassified. Ablow said this can leave some people who are still suffering with some of the symptoms or less severe symptoms out in the cold. “If we don’t loosen it a little bit, I suspect that some of these high-functioning kids may actually either get shifted into a different diagnosis,” said Dr. Thomas Frazier.” 

There is no mention however of the possible negative impact on low functioning autistic children, those with intellectual disabilities who might be excluded by the DSM5 Autism Spectrum Disorder mandatory criterion A which excludes an autism diagnosis where a person is also intellectually disabled:


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:.....`

Like so many autism experts and professionals the FOX experts are concerned about high functioning autistic persons but not about low functioning autistic persons who remain the invisible autistics abandoned by health care professionals and the mainstream media alike.

Posted in , , , , , |

Autism Research Studies Exclude Low Functioning Autistic Participants

Discrimination against persons with low functioning autism disorders takes many forms. It is particularly rampant in the autism research world where studies purporting to inform us about autism almost invariably exclude low functioning autistic participants. Conclusions are again being drawn about persons with autism spectrum disorders based on a study which excluded low functioning autistic participants.  The study examined the effectiveness of the antidepressant Prozac in treating repetitive behavior and obsessive-compulsive behavior in adults with "autism". 

Presumably physicians will be prescribing Prozac either as a consequence of this study and similar confirming studies. If all their clients are persons with high functioning autism and Aspergers they will at least have done so on some evidence basis.  If physicians prescribe Prozac to low functioning autistic adults based on this and similar studies however they will be doing so without any evidence basis. 

The antidepressant Prozac may alleviate repetitive behavior and obsessive-compulsive symptoms in adults with autism, reducing these defining symptoms of the disorder, according to new research.

The research, which included 37 high-functioning autistic adults, mainly diagnosed with Asperger's syndrome, followed participants for 12 weeks. Taking Prozac (fluoxetine) doubled the chances that a patient would show overall improvement, measured by their clinicians. Half of the participants taking Prozac had significant reductions in obsessive-compulsive symptoms, compared with 8% taking placebo. Side effects were mild to moderate and participants taking Prozac did not show increases in suicidal thoughts or ideas.

"Repetitive behavior is a core symptom of the illness," says lead author Dr. Eric Hollander, medical director of the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center in New York, explaining that "from a very early age, these children have rituals and routines. For example, they like to line up their toys and they get very bent out of shape if there is any deviation."


The abstract for the study, A Double-Blind Placebo-Controlled Trial of Fluoxetine for Repetitive Behaviors and Global Severity in Adult Autism Spectrum Disorders, published in The American Journal of Psychiatry,  refers to the participants as adults with ASD's, or Autism Spectrum Disorders, but does not indicate that the study does not involve any low functioning autistic participants. The title of the study report also refers to adult autism spectrum disorders without identifying the exclusion of low functioning autistic participants.

Aspergers? CHECK High Functioning Autism? CHECK Low Functioning Autism? NO, not in the "autism" research world.

Posted in , , , , , , |

High Functioning Autism fMRI Brain Scan Study Misrepresented to the Public



"research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]


Yet another fMRI brain scan study, The neural basis of deictic shifting in linguistic perspective-taking in high-functioning autism,  has been published in which Low Functioning, Intellectually Disabled autistic subjects are, by design, excluded  in favor of subjects with High Functioning Autism. This study published in the journal "Brain" by researchers Marcel Just, Akiki Mizuno and their collaborators at CMU's Center for Cognitive Brain Imaging (CCBI) and described in a PR Newswire Release found that errors in choosing a self-referring pronoun (eg. "you" instead of "I") "reflect a disordered neural representation of the self, a function processed by at least two brain areas — one frontal and one posterior". 

As evidenced by the above quote from autism expert Catherine Lord low subjects with low functioning autism, which would include the 80% or persons with Autistic Disorder (DSM-IV) and intellectual disability, are often excluded from autism research.  That exclusion of low functioning, intellectually disabled subjects from  recent  fMRI "autism" brain scan  studies has been even more obvious.  

The Carnegie Mellon researchers should be commended for describing their conclusions, as their study title expressly states,  in terms of High Functioning Autism given that their study subjects were all high functioning autistic persons.   Unfortunately the press release, which identifies Carnegie Mellon as the source of its information,  is not as meticulous and generalizes the study to the entire autism spectrum  in its title and content, including quote from lead research Marcel Joust:

New CMU Brain Imaging Research Reveals Why Autistic Individuals Confuse Pronouns


...


The results revealed a significantly diminished synchronization in autism between a frontal area (the right anterior insula) and a posterior area (precuneus) during pronoun use in the autism group. The participants with autism also were slower and less accurate in their behavioral processing of the pronouns. In particular, the synchronization was lower in autistic participants' brains between the right anterior insula and precuneus when answering a question that contained the pronoun "you," querying something about the participant's view.


"Shifting from one pronoun to another, depending on who the speaker is, constitutes a challenge not just for children with autism but also for adults with high-functioning autism, particularly when referring to one's self," Just said. "The functional collaboration of two brain areas may play a critical role for perspective shifting by supporting an attention shift between oneself and others.


"Pronoun reversals also characterize an atypical understanding of the social world in autism. The ability to flexibly shift viewpoints is vital to social communication, so the autistic impairment affects not just language but social communication," Just added.


...


Ongoing research at the CCBI is assessing the white matter in detail, measuring its integrity and topology, trying to pinpoint the difference in the autistic brain's networks.


"This new understanding of what causes pronoun confusion in autism helps make sense of the larger problems of autism as well as the idiosyncrasies," Just said. "Moreover, it points to new types of therapies that may help rehab the white matter in autism."

Presenting the results of a study of High Functioning Autism subjects as representing all persons with autism, including the low functioning, intellectually disabled excluded from the study is  misrepresentation. It helps promote ignorance, both in the general public about the many intellectually disabled persons with low functioning autistic disorder identified by CDC autism expert Dr. Marshalynn Yeargin-Allsopp as autistic disorder's "vast majority". 

Posted in , , , , , , , , , |

Discrimination by Any Other Name: Severe Autism Services and Resources Lacking, Severe Autism Research is Sparse

I have not been a big fan of the New York Times coverage of autism issues.  Specifically the NYT has downplayed  the seriousness of autism disorders. It has also downplayed the evidence based effectiveness of Applied Behavior Analysis as an autism intervention while promoting non evidence based interventions like Floortime. It comes as a pleasant surprise to read a recent NYT autism  feature in which experts, Dr. Fred Volkmar of the Yale Child Study Center and Dr. Lisa Wiesner, actually provided some unvarnished, truthful statements about severe, Low Functioning, autism realities even if that information was hidden under the feel good, High Functioning Autism focused title College-Bound and Living With Autism:

"Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors."

( Underlining added for the benefit of those who like to "Counter" any mention of severe autism realities)

The lack of services and resources for the severely autistic is a particularly offensive form of discrimination which sees those most in need of services receive the least help from society. The exclusion of low functioning autistic persons from autism services and resources stinks whatever the excuse offered.

The exclusion of severely autistic subjects from "autism" research is something I have previously noted.  The spate of recent fMRI studies mapping the alleged "autistic brain" have in fact been restricted to subjects with High Functioning Autism only. 

It is very encouraging to see this frank acknowledgement by two autism experts in the New York Times of the shortchanging of low functioning autistic persons that has been taking place.

It is most encouraging to read that the US federal government has identified severe autism research as a high priority  area in autism work.  

Posted in , , , , , |

Laurent Mottron's Dangerous Anti Autism Cure Beliefs Resurface

Dr. Laurent Mottron has spent his entire career studying persons with high functioning autism and Aspergers.   Even as the parents of autistic children and good hearted people everywhere feel sadness and grief over the loss of another autistic child presumed lost Dr. Mottron promotes and oversells a study he led which according, to the good Doctor, supports his belief that autism should not be cured.

I have been unable, in the several years that I have been aware of his anti autism cure ideology,  to find any indication that Dr. Mottron has spent any time working with, or studying, those severely affected by autism disorders, whether they be the 75-80% of persons with Autistic Disorder and Intellectual Disability, those who engage in debilitating and dangerous self injurious behavior or those who wander from home and caregivers to danger, and sometimes, death.  The loss last year of James DeLorey in a snow storm, the Australian child who wandered from home into automobile traffic, the still ongoing tragedy  but now presumed death, of Adam Benhamma near Montreal, will have no impact on the entrenched "autism is beautiful beliefs" of Dr. Laurent Mottron. 

I admit straight up that I personally do not subscribe to Laurent Mottron's anti autism cure ideology and do not trust any study by him  like the one now being touted, which he led, concerning "autistic" brains.  I would ask the professionals who actually work trying to help autistic children lead  fuller lives, including those who actually work with autistic children with severe autism disorders, to analyze carefully and critically Dr. Mottron's new study.  I will be very surprised if the "autistic" brain Dr. Mottron reports on is anything other than a snapshot of some of the very high functioning autistic subjects he has worked with for decades to the exclusion of  severely affected, intellectually challenged persons with autism disorders.

Dr. Laurent Mottron is not just a researcher who has devoted decades to studying high functioning autistic persons.  He has also removed himself from the realm of scientific detachment and objectivity and  involved himself in Canada's legal system in an effort to prevent medicare coverage of ABA treatment for autistic children in British Columbia in the Auton case Auton (Guardian  ad litem  of)  v. British Columbia (Attorney General), [2004] 3 S.C.R. 657, 2004 SCC 78  case.  In Auton  Mottron helped launch the career of high functioning autism researcher and anti ABA advocate Michelle Dawson  with his affidavit in support of her intervention, as an "autistic", before the Supreme Court of Canada.   In his supporting affidavit the good Doctor solemnly declared and affirmed the following statement of expert opinion:

5.
Ms. Dawson has a tremendous understanding of both the difficulties faced by autistic individuals in our society, as well as the tremendous inherent strengths of many of these individuals. 


Personally I have never seen Michelle Dawson make any statement that reflects any understanding, let alone a "tremendous" understanding of the difficulties faced by autistic individuals in Canadian society.  I have never seen or heard statements by her acknowledging the existence of the many persons with Autistic Disorder and Intellectual Disability. I don't know how her life experience as a very intelligent, adult diagnosed "autistic" gives her tremendous, or any,  insight into the challenges faced by low functioning, intellectually disabled autistic children.  Nor have I seen her, or the good Doctor, make any statements describing or addressing in any intelligent fashion the many serious behavior challenges faced by those severely affected by autism disorders.  What is clear though is that Michelle Dawson and Dr. Laurent Mottron both believe that autism is a good thing that should not be cured.  They have long held these anti cure, including anti ABA treatment,  autism beliefs. 

Dr. Mottron also appeared as an unidentified expert witness "the mysterious Dr. M" in Ms Dawson's case before a Canadian Human Rights Tribunal, Dawson v. Canada Post Corporation, 2008 CHRT 41,  in which he described the idea of curing autism as nonsense:

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen, pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.

....

b) The testimony of Dr. M

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by the Tribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’scondition. The credibility of Dr. M. as well as the accuracy of his statements and opinions wasnot challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even if the evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

And now, surprise, surprise, surprise,  Dr. Mottron has published a study which, according to the good Doctor, supports his long held belief that autism should not be cured.  I wonder how many low functioning, severely challenged, intellectually disabled autistic subjects were included in Dr. Mottron's study? I do not buy what the mysterious Dr. M is selling and I doubt that most parents with autistic children, and most professionals tasked with addressing some of the serious and dangerous challenges faced by autistic children and adults,  will buy it either.  

Dr. Mottron is not necessarily an objective, detached medical professional or scientific researcher.  He has long held a belief that autism should not be cured and his latest study conclusions are used to support  his own beliefs. Given his long held personal beliefs his study, and his public commentaries about what conclusions can be drawn from that study, should be given close, careful scrutiny.   In particular his conclusion that the study supports his belief that persons with autism should not be cured should be given very close examination.  As Dr. Mottron stated in the Vancouver Sun:

""While this study does not conclusively show a causal effect between brain activity and the enhanced abilities of those with autism, lead researcher Laurent Mottron of the University of Montreal said it is the most "robust" evidence yet suggesting a link. He said it adds another argument against attempts to "cure" autistics.

When we try to turn an autistic toddler into a non-autistic toddler, it's painful, it's expensive and it does not work," he said. "We should not try to assimilate or break the difference (between autistics and non-autistics), but just admit that it's a difference that has good and bad consequences."

High functioning autism researcher Dr. Laurent Mottron has been promoting his anti autism cure belief for many years.  Hopefully his latest efforts to thwart treatment and cure of autism disorders will enjoy no more success than his previous efforts.  The chance to improve the lives of autistic children and adults is too big a price to pay for the promotion of Dr. Mottron's personal belief system.

Posted in , , , , , , , , |

Where do Severely Autistic Adults Go After Education Ends?

In Where do Autistic Adults Go After Special Education Ends? CDFoakley continues a series of courageously honest videos about the realities faced by persons with severe autism disorders and their families. This is a question asked by many parents of severely autistic children. The uncertainty  is a reality we must face.


Posted in , , , |

2010 Autism Picture of the Year


Robert Capovilla, right, is reunited with his family Sunday night, a day after the autistic teenager went missing, prompting a huge police search. Aunt Margaret Saracino and father Adriano Capovilla reach for Robert on his return home.
RICK MADONIK/TORONTO STAR
The best "autism" picture I saw in the mainstream media during 2010 is the Rick Madonik/Toronto Star picture, above,  of Robert Capovilla,  a young, low functioning autistic man,  shown being reunited with his parents after being lost in downtown Toronto, in biting cold weather,  for more than 24 hours.  

The picture speaks for itself.

Posted in , , , , , |

Low Functioning Autism Reality and Autism Posers at New York Magazine


New York Magazine Says Aspergians and High Functioning Autistics, like 
Ari and Alex Shown Posing for their NY Magazine Coronations,   who Socialize
with Washington Pols and NY Media, Drive Land Rovers, Produce  Videos
with Autism Speaks; and Argue with Experts at IACC  Meetings 
Represent, and Speak for, People with Autism

Many parents and siblings of persons with low functioning autism might  disagree

****************************

I received the following email from Wanda James in the Upper Ottawa Valley and post  it with her consent. It is important for those who have children and siblings who are severely affected by autism disorder to speak out and be heard.


***************************

"Hello

I'm so glad to have found you if only because I've been searching the web endlessly and just about ready to pull my hair out reading about all these high-functioning socially inhibited "disabled" people. It was a relief to find someone who understands the true nature of autism and what it entails.

I'm desperately trying to find some info for my mother who is caring for my severely autistic 39 year-old sister. My parents are elderly now and have no idea what will happen to Jennifer when they go. No one in the immediate family can take her-- she is very hard to handle- very self-destructive and obsessive to the point of violence if the ritual is disrupted.  I've been searching for anything to give them hope that there is something out there but I can't find anything except a lot of people who are rejecting help because they don't want autism to be seen as a disadvantage. Makes me so mad. I joined a forum just to "let them have it" but I guess I ran out of steam.  I've got to choose my battles carefully these days. My parents are a bit isolated on a farm in the upper Ottawa Valley in Eastern Ontario so there's not much of a network there. I just wanted to be able to give them some hope that there are programs out there. Except there aren't any. Autism Ontario and the Autistic Society seem to be lobbying the government for lower priority things, like camps for kids, publications, workshops, theatre groups, raising awareness etc.-- and nothing for actual bricks and mortar housing or the staff to put in them. They closed down the only place we had here in Ontario for severely disabled people because they deemed it too "institutional" and not efficient. They then went on to open some prototype group homes which all failed because the people living in them weren't as independent as the government assumed they'd be. Why are governments usually made up of idealistic morons? Don't get me started! : )

I'd like to know how you are doing with getting the message through to governments, etc. I would be lobbying on the Hill if I could, but I'm disabled myself with pretty severe rheumatoid arthritis. I share the sense of fear my parents have and there don't seem to be any answers. Meanwhile, autism has become a trendy thing to have-- and suddenly everybody has it if they so much as stare into space for 5 seconds. I could not believe some of the forums. One woman said she was okay in social situations, but nervous in interviews! Well, duh. Who isn't? But the danger here is the "watering down" of the impact of autism on a person's (and) family's) life. It clogs up the system, driving the numbers up which governments take into account when they are doling out assistance. In the end, the people who really need the help, don't get it. It's much the same with arthritis. Everybody I meet has it-- in a thumb, wrist, whatever. They take a Tylenol and they're fine. But I will be having chemo next month to help eradicate mine. I've got 3 artificial joints and tendon repairs. I've been on some pretty life-threatening medications. But it's hard to be taken seriously, because "hey, my aunt has arthritis, and she can still work". That's why I wrote the book Getting Up is Hard to Do: Life with Rheumatoid Arthritis- to try to get the message out there. Now I've got to fight for my sister. I don't know how to deal with this.

Hope you don't mind me writing.

Take care

Wanda James
Ottawa

****************************

If you have read this blog on occasion you will know that I try to being attention to those who are typically ignored by the mainstream media that fawns over such "autistic" persons as Ari Ne'eman, John Elder Robison, Alex Plank and Amanda Baggs ... all people of considerable intellect and high functioning abilities,  people whose "autism" has little if anything in common with my  severely autistic son diagnosed with autistic disorder by three pediatricians with autism expertise and assessed by an autism specialized clinical psychologist and professor emeritus.  Those for whom autism is a "social" disorder, a different way of thinking or a "culture" do not face the autism reality faced by my son.

Occasionally I hear from parents or other persons with a loved one with  low functioning autism who face challenges similar to my son.  Like me they are all too aware of the periodic Big Media (CNN, CBC, NYT, Newsweek, New York Magazine etc)  anointment of "new" voices of "autism", of new "leaders" of autism.  Where did Ari Ne'eman come from before the New York Magazine elected him as the "autism self advocate" par excellence? How did IACC, Interagency Autism Co-ordinating Committee, member Ne'eman, diagnosed as a teen with Aspergers, a university student with the social skills to hob nob with US federal and state politicians and make innumerable media appearances, acquire the knowledge and understanding of severe autistic disorders to be able to speak on behalf of people like my son?

Various autism advocacy organizations, including Autism Speaks, have accepted these high functioning, barely autistic, persons as spokespersons for all on the autism spectrum and virtually ignore the realities of those most severely affected by autism. As with media and advocacy groups so too with governments which tend to ignore the most severely affected by autism, the low functioning autistic persons who live out their lives in restricted, archaic mental institutions instead of creating  positive, modernized, secure residential facilities staffed with autism trained personnel and access to badly needed professional. For many governments John Elder Robinson, former rock band musician, successful businessman, author and family man is the face of autism not Bryan Nevins who was left to  swelter to death, unable to remove himself from a hot van in Pennsylvania.  For many governments the face of autism is a high functioning, intelligent and articulate media star not the 50 year old autistic woman who could not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. 

Other parents, and members of families with severely autistic loved ones, know the difference. They know that their children are ignored by media, "autism" advocacy groups, governments, even by the American Psychiatric Association which reduced the percentage of persons with autism AND intellectual disability by expanding the definition of autism disorders in the DSM-IV to include high functioning persons with no intellectual disability.  Meanwhile, the APA is continuing its efforts to ignore and exclude those with low functioning autism disorders by further expanding, and diluting,  the definition of autism in the DSM-5.

 The New York magazine is unlikely to visit  any time soon some of the institutions  and facilities like those I have visited or the one in Long Island where a 50 year old autistic woman was abused or the one in Pennsylvania where a young severely autistic man died a horrific death in a searing hot van.  In all fairness though it could be difficult to get some of autistic residents in those facilities to pose  elegantly for some "glam" shots for the New York Magazine.


Those of us with children, siblings and loved ones  severely affected by Autism disorders must continue the fight to better their lives in the face of media, advocacy group and government indifference. 
We have no choice.  Our severely autistic loved ones have no alternative.

Posted in , , , , , , , , , , , |

Search

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