Group items tagged

Once we learn about this difference, we can then look for medications that block the consequences of the variant and once we make sure they are safe, we can then start testing these new medications in children who are at risk of developing autism, with the objective of preventing autism (i.e., avoid breakdown in connections between nerves and abnormality in brain connectivity).

Response: Yes, all of them could be tested in utero; we have identified 10 new variations (9 rare and 1 common) and we have replicated (and confired) four other once that were previously published (neurexin 1, contactin 4, 15q11 and 22q11). However, we do not have a yes or no answer as to whether the fetus will be autistic -- but if we are testing a fetus in an autistic family the value of the test is much higher.

Thompson (1993) describes facilitated communication as a classic example of the self-fulfilling prophecy. The facilitator wants to believe that the person with a severe cognitive and language disability is actually of normal to superior intellectual ability. Parents especially want to believe that a way has been found to finally unlock the door to their real son or daughter.

In short, people want facilitated communication to work.

Advocates of facilitated communication often respond to naysayers, "It can't hurt to try it." Biklen agrees, "It is not harmful to teach people to communicate through pointing." However, he qualifies his claim with the caveat that "it can be harmful if the facilitator over interprets, does not monitor the person's eyes, facilitates when the person is looking away, is not sensitive to the possibility of guiding the person, and asks leading rather than clarifying questions."

Some argue that "false communication" may distort beliefs, understanding, and rehabilitative approaches to persons with autism and other developmental disabilities.

There are at least 50 legal cases in the U.S. involving allegations of sexual abuse produced through facilitated communication (Berger, 1994). Several such cases have already occurred in Australia, and some have arisen in Europe (Green, 1992).

Additionally, facilitated communication in the past few years has been the source of many contested abuse allegations, usually allegedly reported by an individual with very limited unassisted communication skills against a family caregiver or caregivers.

With the exception of three empirical studies (Intellectual Disability Review Panel, 1989; Calculator and Singer, 1992; and Velazquez (in press)) which provide preliminary validation of facilitated communication, most of the support for the validity of facilitated communication is based on anecdotal reports.

Unfortunately, validity questions surround anecdotal reports of facilitated communication. In general, these reports lack the controls necessary to rule out experimenter biases, reliability concerns, and threats to validity (Cummins and Prior, 1992; Jacobsen, Eberlin, Mulick, Schwartz, Szempruch, and Wheeler, 1994).

Although Biklen (1990) admits that facilitator influence is a real possibility, facilitated communications are typically reported as though they are the words of the person with a disability.

Without exception, these empirical studies have questioned the authenticity of the communication as truly coming from the individual versus the facilitator.

Interdisciplinary Party Report (1988) and the Intellectual Disability Review Panel (1989) both of which examined the source of facilitated communications produced by persons in Australia, and found strong evidence that responses obtained through facilitation were influenced by the facilitator.

Gina Green, Director of Research for the New England Center for Autism and Associate Scientist for the E.K. Shriver Center for Mental Retardation, Inc., has reviewed over 150 cases where empirical testing was performed and cites 15 independent conduct evaluations involving 136 individuals with autism and/or mental retardatiion who were alleged to have been taught to communicate via facilitated communication. In none of the cases were investigators able to confirm facilitated communication by the 136 individuals.

Look at the content of any intelligence test—language, arithmetic, patterns, designs. What we measure with the aid of those I.Q. booklets are not the abilities we inherited from out our animal past, but instead their exact counterpart; we measure only those skills the species has been adding throughout all its history since. In some sense, an intelligence test measures the modernness of an individual; an intelligence test measures an individual’s ability to appropriate for himself the same set of skills the species has been appropriating as a whole—skills that do not find their origin in our biological nature, but instead owe their existence to the strange, brewing mixture of non-biological pattern, structure and form that has been rapidly taking shape all around us.

The unusual characteristics of humanity’s transformational individuals are not the result of their genius, they are genius’s prerequisite

But counter to prevailing wisdom, there are many autistic individuals—most likely a majority—who do make substantial progress by means of an alternative perceptual course, a course that allows them not only to navigate meaningfully their surrounding world, but also to assimilate, if somewhat awkwardly and belatedly, to the human species itself (and thereby explaining how autism, estimated to be present in nearly one percent of the human population, could go entirely unrecognized until as recently as sixty-five years ago).

all autistic individuals must crystallize their existence by means of this alternative perceptual course—it becomes, in essence, autism’s most salient feature.

The unusual behaviors and interests of autistic children—lining up toys, staring at ceiling fans, twirling, flapping hands repeatedly, fascination with knobs, buttons, switches, letters, shapes and digits, watching the same video again and again, singing the same song over and over—these activities betray a form of perception completely unlike that of most other children, a perception noticeably absent in social and biological focus, but also noticeably drawn to symmetry, repetition and pattern.

The unusual routines of autistic children are the natural, indeed the expected, mode of expression for a form of perception engaged primarily by the structural aspects of the non-social, non-biological world.

Autistic individuals would have been the first to notice the inherent structure contained in the natural world—the geometry of plants, the isomorphisms of natural objects, the logic of the celestial seasons—only they would have had motivation to embrace such form, only they would have had the need to perceive nature’s symmetry, repetition and pattern in order to form their cognitive grounding.

We know only bits and pieces about the four Greeks on Professor Flynn’s list, but filling in with the traits from the list’s more modern members, we can reasonably summarize all the unifying characteristics: late- or strange-talking, socially awkward, irascible, obsessed with structure, compelled by form, unusually—not necessarily greatly—intelligent.

The continuing medicalization of autism, the insistent demonization of autism’s spontaneous effect—these carry the danger of an unforeseen consequence. For the cure of autism will not be the end of a tragic brain disorder; autism’s eradication will not see the passing of a troubling mental disease. The removal of autism from the entire human species will produce only an ironic solution to the mystery of our expanding human intelligence, it will produce the ignoble end to the Flynn effect.

When confronted by data that runs counter to our accustomed way of seeing things, we as humans have but two choices: we can try to explain the results away, or we can adjust our perception of the experienced world. The former choice paves the all-too-common road of modern academic science; the latter, as described above, walks the more promising path of genius.

Autism is not a mental illness, not a brain disorder, it is instead the source of humanity’s changing perception of its experienced world; it is, with care and understanding, genius’s fertile soil.

Facilitated Communication therapy began in Australia with Rosemary Crossley. The center for FC in the United States is Syracuse University, which houses the Facilitated Communication Institute (FCI) in their School of Education.

A very damaging, detailed criticism was presented on PBS's "Frontline", October 19, 1993. The program was repeated December 17, 1996, and added that since the first showing, Syracuse University has claimed to have done three studies which verify the reality and effectiveness of FC, while thirty other studies done elsewhere have concluded just the opposite.

Furthermore, FC clients routinely use a flat board or keyboard, over which the facilitator holds their pointing finger. Even the most expert typist could not routinely hit correct letters without some reference as a starting point.

Facilitators routinely look at the keyboard; clients do not. The messages' basic coherence indicates that they most probably are produced by someone who is looking at the keyboard.

Anyone familiar with Helen Keller, Stephen Hawking or Christy Brown knows that blindness, deafness, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis (ALS), or physical or neurological disorders, do not necessarily affect the intellect. There is no necessary connection between a physical handicap and a mental handicap. We also know that such people often require an assistant to facilitate their communication. But what facilitators do to help the likes of a Hawking or a Brown is a far cry from what those in the facilitated communication business are doing.

But the vast majority of FC clients apparently are mentally retarded or autistic. Their facilitators appear to be reporting their own thoughts, not their patient's thoughts. Interestingly, the facilitators are genuinely shocked when they discover that they are not really communicating their patient's thoughts. Their reaction is similar to that of dowsers and others with "special powers" who, when tested under controlled conditions, find they don't have any special powers at all.

It is interesting that the parents and other loved ones who have been bonding with the patient for years are unable to be facilitators with their own children.

And when the kind strangers and their patients are put to the test, they generally fail. We are told that is because the conditions made them nervous. These ad hoc excuses sound familiar; they sound like the complaints of parapsychologists.

Skeptics think the evidence is in and FC is a delusion for the most part. It is also a dangerous delusion. Critics have noted a similarity between FC therapy and repressed memory therapy: patients are accusing their parents and others of having sexually abused them. Facilitators are taught that something like 13% of their clients have been sexually abused. This information may unconsciously influence their work.

Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy - often carefully designed educational and social activities with rewards - most autistic children remain autistic. Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

The researchers are also doing imaging tests to see if the recovered kids' brains look more like those of autistic or nonautistic children.

Imaging scans also are being done to examine brain function in formerly autistic kids.

Results from those tests are still being analyzed.

Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.

Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.

Significant improvement suggesting recovery was evident by around age 7 in most cases, Fein said.

None of the children has shown any sign of relapse. But nearly three-fourths of the formerly autistic kids have had other disorders, including attention-deficit problems, tics and phobias; eight still are affected.

An initial retrospective study is comparing two groups of 20 children initially diagnosed with autism who were functioning well after two or more years of treatment, either with a discrete trial training approach or the DIR approach. The study aims to determine if treatment differences lead to subtle differences in outcome, for example, in terms of flexibility, emotional range, creativity and richness of the child's inner life. Investigators are planning to follow this research with a prospective, randomized, more rigorous study of the two approaches.

"In our previous studies we found out that it looks like you can't just deliver a standard treatment to autistic kids, that there's so much variability among the children that what works for one child doesn't work for another child," he says. "Our hypothesis is that...unless you individualize treatment, you're not going to get the best effect."

Researchers at the University of Maryland are testing an intervention to trigger children's "social engagement system," which includes behaviors such as listening, looking, facial expressions and vocalizations that support social interaction, says psychologist Stephen Porges, PhD. The treatment is designed to improve autistic children's ability to interact with others, thereby making them more receptive to traditional therapies.

The intervention is based on the theory that tensing the middle ear muscles enables people to pick out the human voice from lower frequency sounds in the environment, Porges says. Treatment involves exercising middle ear muscles by playing music that has been altered to include only frequencies associated with the human voice, which improves one's ability to listen to human voices. This, in turn, stimulates the entire social engagement system, Porges says. About 80 percent of 50 children with autism or other behavioral problems receiving this treatment via five 45-minute sessions in a double blind, randomized controlled study showed marked improvements in listening, language and other communication skills.

In a report last year in the Journal of Autism and Developmental Disorders (Vol. 28, No. 1, p. 15-23) evaluating an intensive home-based discrete trial training intervention, Stephen Sheinkopf, PhD, of the University of Miami and Bryna Siegel, PhD, of the University of California, San Francisco, noted that children receiving an average of only 21 hours per week of treatment showed gains in IQ comparable to those achieved by children receiving 32 hours per week. The intensity question remains an issue of importance for the autism community. "If we need 40 hours a week, fine," says psychologist Geraldine Dawson, PhD, of the University of Washington. "But if you only need 25, you have to realize that 40 hours is a tremendous burden not only financially, but on families and on the child."

Another weakness of the study is that it was short term, only four weeks. It therefore did not test if the effect of hyperbaric treatment survives much beyond the treatment itself. Even if the effect in this study is real, it may represent only a temporary symptomatic benefit - not altering the course of autism itself. Therefore longer followup studies are needed as well.

It is not impossible that hyperbaric oxygen may have some benefit in some children with autism.

The biggest risk of the treatment now is that it is expensive - costing 150-900 dollars per treatment or 14-17 thousand dollars for a chamber.

But one thing is clear - any future studies should be very tightly controlled, or they will be counterproductive.

in most cases after even very extensive testing no specific medical cause for the condition is found. As with autism, children who suffer from this condition are at increased risk for seizures.

evidence suggest that it arises as a result of some form of central nervous system pathology.

Childhood disintegrative disorder is perhaps 10 times less common than more strictly defined autism

The exclusion by autism self advocates of the intellectually disabled autistic population occurs despite the fact that many persons with Autistic Disorder are intellectually disabled. The ICD-10 mentions this fact expressly in its description of Autistic Disorder:

Autistic Disorder...In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation.

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.

There are more than 200 known causes of intellectual disability. Some common examples of intellectual disability are: Down syndrome Autism

The attempt by higher functioning persons with ASD's and Aspergers to disassociate "autism" from intellectual disability helps stigmatize persons with intellectual disabilities including the many persons with autistic disorder and intellectual disabilities.

And some ND's, to counter the fact that most with LFA are retarded, some "famous" autistics like to promote FC as "proof" that they aren't.

My cousin is profoundly autistic. He is around 20 and cannot communicate at all, not verbally or in the written word, and has never said a word. Luckily, his family is smart enough to know that if anyone tries use FC on him they will know it is a scam.If a facilitator told my aunt that P was writing poems and understood Shakespeare she would just laugh. She loves P as he is; she knows reality and doesn't try to force him to be someone he isn't.

The current Wikipedia article still shows a frequency of 25-70% incidence of mental retardation in people with autism.

Yet, the reader is drawn to see not the high percentage (25% is still very high) but the width of the range, therefore there must be something wrong with the ability of standard tests to measure "autistic intelligence".

Mentally retarded IMO comes from the intelligence scales. These do not address the learning styles of all people and are inflexible. I do believe there are better ways to understand how someone learns. I also don't believe there are limits on what we learn, the brain's placisity allows us to learn our entire life.

I've spoken hundreds of parents and it worries me that so many have problems accepting their children as they are and will be.For some intelligence is the magic word, a kind of hidden cure inside their child.But autistic kids with a normal IQ which they can use function better than those with high IQ's they can't use.

I am only concerned about the cases where the FC person NEVER does ANY kind of independent work, which seem to be the majority of FC cases.

Pervasive Developmental Disorders, including Autistic Disorder, Asperger Disorder, Pervasive Developmental Disorder Not Otherwise Specified, and Childhood Disintegrative Disorder.

For autistic disorder, Fombonne says: The correlation between prevalence and year of publication was statistically significant and studies with prevalenceover 7/10,000 were all published since 1987. These findings point towards an increase in prevalence estimates in the last 15-20 years.

recent autism surveys have consistently identified smaller numbers of children with AS than those with autism within the same survey.

We therefore used for subsequent calculations an estimate of 6/10,000 for AS, recognizing the strong limitations of available data on AS.

How much lower is difficult to establish from existing data, but a ratio of 3 or 4 to 1 would appear an acceptable,

Eight studies provided data on childhood disintegrative disorder (CDD). Prevalence estimates ranged from 0 to 9.2/100,000.

Current evidence does not strongly support the hypothesis of a secular increase in the incidence of autism but power todetect time trends is seriously limited in existing datasets.

The upper-bound limit of the associated confidence interval (4.0/100,000) indicates that CDD is a very rare condition, with about 1 case to occur for every 103 cases of autistic disorder.

Whilst it is clear that prevalence estimates have gone up over time, this increase most likely represents changes in the concepts, definitions, service availability and awareness of autistic-spectrum disorders in both the lay and professional public.

The possibility that a true change in the underlying incidence has contributed to higher prevalence figures remains, however, to be adequately tested.

Our increasing exposure to EDCs lends support to a new hypothesis about the cause of autism, called the "extreme male theory." This theory, proposed by Dr. Simon Baron-Cohen and colleagues, speculates that autism is caused by something changing a fetus' hormonal balance that then leads to over-masculinization of the developing brain. Could that "something" be the slurry of hormone-altering chemicals we're exposed to every day? Are EDCs the reason autism-type disorders are 4-9 times more common in boys? (Vaccine side effects never show such lopsided impact on boys versus girls...a glaring fact that is totally ignored by those promoting the vaccine theory of autism.)

Here is where the very interesting link to EDCs comes into play: EDCs often act as weak estrogens and estrogen feminizines the body, but in a fetus' developing brain estrogen actually has the opposite effect...it causes masculinization.

The NCS will establish over one hundred study centers across the US to test the blood of 100,000 newborns for scores of synthetic chemicals, including many EDCs. (Workers have already begun going door-to-door enrolling pregnant moms into the program.) For the next 21 years, scientists will carefully follow the children's health, comparing the body burden of chemicals at birth to diseases developed later in life.

Within 3-4 years, we expect to have enough data accumulated to start detecting what chemicals might be linked to autism.

Beside the NCS, I support other new studies to look at: 1) the autism risk in vaccinated vs. unvaccinated kids; 2) the metabolism of vaccine ingredients (like aluminum, added to make shots work better), 3) more accurate determinations of the true incidence of autism.

The upshot of these differences is that the columns in an autistic brain seem to be more connected than normal with their close neighbours, and less connected with their distant ones. Though it is an interpretative stretch, that pattern of connection might reduce a person’s ability to generalise (since disparate data are less easily integrated) and increase his ability to concentrate (by drawing together similar inputs).

Dr Snyder argues that savant skills are latent in everyone, but that access to them is inhibited in non-savants by other neurological processes. He is able to remove this inhibition using a technique called repetitive transcranial magnetic stimulation.