Showing posts with label Asperger Disorder. Show all posts
Showing posts with label Asperger Disorder. Show all posts

Wednesday, February 06, 2008

Einstein's Alleged Autism Is Speculation Not Fact


WNDU has an interesting autism article and video feature Autism: Understanding the Puzzle on its web site WNDU.com. The feature is helpful in stressing different kinds of autism and providing links to autism resources. The video includes footage of a family's children with different autism disorders. One drawback though is that the feature opens by asserting as fact the speculation that Albert Einstein was autistic.

"What do you think of when you hear names like Albert Einstein or Dan Aykroyd? It's likely Einstein's brillance comes to mind and Aykroyd's comic timing. But did you know both the physicist and comedian had or have forms of autism?"

I don't know if Mr. Aydroyd has an autism diagnosis disorder or not but Albert Einstein did not in the sense that he was never diagnosed with autism . There are some who speculate that Einstein was autistic because of some known eccentric behaviors and his self description as a lone traveler. Speculation about historical figures having been autistic is common and includes Beethoven, Newton, Darwin, Jefferson, Hitler, Eamon de Valera, Orwell and Michelangelo to name only a few. The problem is that all such instances are simply speculation. The biggest drawback of any such speculation is the total lack of any clinical observation:


Speculative claims that historical figues displayed behaviors associated with autism spectrum
disorder include people who died before the work done by Hans Asperger and Leo Kanner in classifying autism spectrum conditions was completed. Autism has only been recognized since the 1940s, so many earlier cases may have gone undiagnosed.[2]Speculation about their diagnoses is based on reported behaviors rather than any clinical observation of the individual. Fred Volkmar, a psychiatrist and autism expert at the Yale Child Study Center says, "There is unfortunately a sort of cottage industry of finding that everyone has Asperger's."[3]

Wikipedia, People speculated to have been autistic

Unfortunately, speculation repeated often enough will sometimes becomes accepted as fact. When it does a myth is born. Albert Einstein was brilliant, he was different, but he was never diagnosed with an Autism Disorder.

Sunday, June 17, 2007

Autism & The Neurodiversity Message - We Know What is Best for Your Autistic Children - Do Not Try to Treat or Cure Your Children

There are a number of disputes which plague the world of autism. Although none is as curious as the anti-autism cure movement known as "neurodiversity". Composed largely of persons with high functioning autism and Asperger's it is bolstered also by some parents of autistic children who subscribe to the view that by trying to cure their child's autism they are trying to destroy their child's essential identity. These parents, and some professionals, also repeat the Neurodiversity mantra that parents seeking to cure their children of autism or even to treat its more egregious symptoms actually hate their children. These parents and professionals then have no qualms about spreading their hostile message and accusing other parents who have not succumbed to the Neurodiversity message of hating their own children.

The current US court proceedings highlight the beliefs of some parents that their child's autism was caused by thimerosal, a mercury containing organic compound used as a preservative in some vaccines. Even the dates at which thimerosal ceased being used widely in vaccine preservatives, if at all. But nothing can compare to the circular, and at times bizarre, logic of the Neurodiversity advocates and their attacks on parents seeking to help their own children.

The fundamental premise of Neurodiversity is itself a sound premise, one with which I completely concur and one with which I am sure all parents of autistic children are in agreement - acceptance. Acceptance of autistic persons as human beings deserving of dignity, respect and inclusion in all aspects of society. After that fundamental premise however the Neurodiversity movement falls off the rails.

Not content with acceptance of autistic PERSONS, not content with acceptance of the fact that persons are autistic, the Neurodiversity movement tells us, parents included, that we must stop trying to treat and cure our autistic children; we must embrace our children's autism as a wonderful natural variation of human existence, one that, in some ways at least is even superior to other such variations. Indeed we must find and accept the joy of autism.

To reach this stage of Neurodiverse enlightenment parents are told, amongst other things, that they do not know what is best for their own children, they can not know what is best, unless of course, they too are autistic. Far better that they listen to complete strangers who have never met their children, never cleaned up after their children, never fed their children, never laughed with or tickled their children, never sang with their children, never fixed windows broken with their children's hands, never helped their children to eat as they literally starved themselves to near death states, never helped their children calm down while banging their heads against walls or biting their hands or wrists. Better to listen to strangers who will not be there for their children when they need residential and institutional care as adults. Stop presuming that mom and dad knows best. The experiences and observations of parents who live with, care for and interact with their autistic children on a 24/7 basis from birth onward should be given no weight. Parents know naught. Only the internet strangers who are, or claim to be, autistic can truly speak for all autistic persons including the children whose parents seek to help, treat and cure them. Only by embracing the wisdom of these strangers can parents reach Neurodiverse enlightenment.

When parents point out that these Neurodiverse sages do not share the same severity of autism as their children and can not possibly understand their children's challenges the Neurodiverse are offended. They are offended that parents would presume to divide autistic persons by the degree of severity of their autism. This is where the Neurodiversity logic breaks down totally and they reach and grab for any theory or explanation to maintain their self promoted presumption of autism expertise. Although the Neurodiverse embrace the label of autistic, or autism, as a descriptive term they reject its origins as a medical diagnosis, one of a spectrum of disorders of varying degrees of severity and different characteristics.

Autism is a term used loosely to describe a number of disorders now classified on Axis I of the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV), and known as the Pervasive Developmental Disorders. Autism Disorder is a PDD. In the 4th edition a number of diagnoses were added to the PDD's - Rett's Disorder, Childhood Disintegrative Disorder and Asperger's Disorder. Asperger's Disorder is the diagnosis which will likely be made for persons who have traditionally been labeled as having "High Functioning Autism." It is the appropriate diagnosis for individuals who have evidence of many Autistic-like symptoms but for whom there are no language impairments. - Meredyth Goldberg Edelson, Ph.D. Department of Psychology,
Willamette University. As Dr. Edelson also points out in Autism-Related Disorders in DSM-IV there are many variants in autism disorders. The reasons for tightening the criteria for Autism and for adding Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder to DSM-IV is to recognize that Autism is a disorder with many possible symptom variants. Because of this, individuals diagnosed with Autism in the past have been heterogeneous. . Notwithstanding that the Neurodiversity movement of some high functioning autistic persons, some sympathetic parents and professionals embraces the diagnostic label of autism they reject the other elements of diagnosis, the heterogeneity that gives rise to different diagnoses based on severity and nature of the autism or pervasive developmental disorders.

While rejecting the views of parents, who can not believe that these internet essay writers and interveners in court cases and political proceedings have much in common with their children, and while rejecting the professional classification which gives rise to the diagnosis of Autism which they embrace, the ND polemicists also ignore the writings of their own academic icons, particularly Montreal psychiatric researcher Dr. Laurent Mottron. Dr. Mottron has himself acted as an advocate for the Neurodiversity movement, filing an affidavit in support of Michelle Dawson who intervened in the famous Auton proceedings before the Supreme Court of Canada and appearing himself as an expert witness before the recent Canadian Senate proceedings examining funding of autism treatment in Canada. Dr. Mottron, like his colleague Michelle Dawson, opposes Applied Behavior Analysis as a treatment for autism.

The good Dr. Mottron, notwithstanding his entrenched opposition to ABA as a treatment for autism, does not appear to have any serious expertise as a clinician and appears to have a very narrow range as an autism researcher, focussing his several studies and reports per year almost entirely on subjects which his reports themselves invariably describe as HFA (High Function Autistics), Asperger's, and even Autistic Savants. Thus while the Neurodiversity movement has appointed Dr. Mottron as one of its heroes it seems to have overlooked the fact that he himself uses a descriptive system which recognizes different levels of severity, different symptoms, of the various and heterogenous PDD or Autism Spectrum Disorders. Dr. Mottron's high functioning autism studies also contribute to the efforts of such as Morton Ann Gernsbacher and their mutual colleague Michelle Dawson. It does not appear that any of this illustrious trio will soon be rushing out to study, or heaven forbid actually work with, the lower functioning autistic persons residing in institutional care and unable to communicate in any meaningful way with other people.

At the end of the day the fundamental contradiction of the Neurodiversity movement is that it is a movement of people who organize based on a spectrum of neurological disorders, a spectrum divided by deficits of differing types and severity who then argue that their disorder are not disorders at all just different orders. And then some argue that they are the only truly authentic voices for these disorders (which are not disorders) even though their deficits are different than those of the children whose parents are trying to help them through treatment or cure.

And while they are quick to complain about the insensitivity of language used to describe the serious challenges faced by more severely autistic persons they are equally quick to use pejoratives such as "curebies" to describe concerned and caring parents. The neurodiversity crowd even stooped to accusing the parents in the touching video "Autism Every Day" of having faked or staged the video. I was not in the "Autism Every Day" video. But my son who I love dearly presents, along with great joy, incredibly challenging deficits which threaten his own safety and that of his brother, mother and even me, as when driving I am grabbed from behind by a suddenly distraught autistic son.

The Neurodiversity movement is at best silly and at worst insulting, abusive and dangerously misleading. I, for one, will never drink the Neurodiversity Kool-Aid. I will leave that to those who believe that, in order to find joy in their autistic child, they must find joy in his or her autism, a mistake I will never make.

Tuesday, February 27, 2007

Combating Autism Act Spurs Autism Research




The following article from the Psychiatric Times gives a good, digestible, overview of some of the autism studies currently being conducted even as the Combating Autism Act spurs more research.


New Act by Congress Gives Boost to Autism Research
By Arline Kaplan


February 2007, Vol. XXIV, No. 2

The passage and signing in December of the Combating Autism Act (S. 843), which authorizes $945 million over 5 years for research, screening, intervention, and education on autism spectrum disorders (ASD) and developmental disabilities, has been hailed by the advocacy group Cure Autism Now (CAN) as a “federal declaration of war on the epidemic of autism,” a disorder that affects 1 in 166 children. 1 Yet, some battles are already under way at NIMH's Intramural Research Program, with patient recruitment proceeding for 3 major autism studies.

In a press statement, Jonathan Shestack, father of an autistic child and cofounder of CAN, a large private funding organization for autism research, said S. 843 (now Public Law 109-416) “creates a congressionally mandated road map for a federal assault on autism, including requirements for strategic planning, budget transparency, congressional oversight, and a substantial role for parents of children with autism in the federal decision-making process.”

Key provisions of the law, subject to the availability of appropriations, call for the following:

* Expanded research on ASD, including basic and clinical research in such fields as pathology, developmental neurobiology, genetics, pharmacology, nutrition, immunology, neurobehavioral development, and toxicology.
* The CDC to increase and update its efforts to monitor autism incidence and prevalence around the country and to support the establishment of regional Centers of Excellence in the epidemiology of ASDs and other developmental disabilities.
* Development of a curriculum for continuing education to assist in recognizing the need for valid and reliable screening tools and in using those tools.
* Early screening of individuals at higher risk for ASD and other developmental disabilities.
* Congressional oversight of the Autism Centers of Excellence.
* Expansion and reauthorization of the Interagency Autism Coordinating Committee, composed of relevant government officials, experts, families of those with ASD, and at least one individual who has ASD.

Autism trials

The NIMH studies on the NIH campus in Bethesda, Md, are the first products of a new, integrated focus on autism. One study, “Clinical and Immunological Investigations of Sub-types of Autism,” seeks to learn more about autism and its subtypes. “It is actually two studies in one,” said Susan Swedo, MD, chief of NIMH's Pediatrics and Developmental Neuropsychiatry Branch.

The first is a study of regressive versus nonregressive autism to determine whether there is an immune or other systemic trigger of children's neurologic regression, she said. It involves 50 children with idiopathic autism and regression, 50 children with idiopathic autism and no history of regression, 25 children with Rett syndrome, and 50 healthy children. The age range of all 4 groups is between 12 months and 48 months at first visit.

The second component to the study, Swedo said, is part of the Autism Phenome Project, a pilot investigation being conducted in collaboration with David Amaral, PhD, Beneto Foundation Professor and director of research at the M.I.N.D. Institute at the University of California, Davis. Between the 2 sites, the pilot phase of the phenome study involves 50 to 100 children with autism, 50 children with developmental delays, and 50 to 100 children without disorders. The purpose is to identify clinically meaningful subtypes of autism, which could lead to better understanding of the etiology and pathophysiology of the disorder.

Increasingly, researchers are considering that autism may be multiple disorders. The regressive subtype is well characterized, Swedo said, although there is some debate about how common it is. The reports vary from indicating that as few as 10% to as many as 40% of children with autism have a pattern of regression.

With regressive autism, Swedo explained, you have a history of the child developing typically until age 12 to 18 months with appropriate development of language and social skills and then the child loses words and social skills and begins to look indistinguishable from children who have had autistic symptoms from birth or early on.“Some investigators have found that the regressive subtype actually has a worse prognosis,” she said.

To explain the regression, Swedo said that the research team's working hypothesis is that there are environmental triggers or perhaps genetic aberrations that are expressed at this particular point in the child's development. One possibility based on Swedo's work with obsessive-compulsive disorder and the pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections subgroup is that regressive autism develops following a viral or bacterial infection that triggers an autoimmune response and neuropsychiatric symptoms.

The phenome study includes questions related to a child's exposure to environmental toxins and household products; neuroimaging (structural MRI); and biomarkers; as well as very careful behavioral, neurologic (eg, via electroencephalograms administered while the child sleeps in the hospital overnight), and physical assessments. “The children will be monitored every 6 months to a year until they are age 5, and then intermittently after that time” to examine the validity of their diagnosis and how their symptom course evolves over time, Swedo added.

Minocycline study

In another small-scale intramural study, Treatment of Childhood Regressive Autism With Minocycline: An Anti-Inflammatory Agent Active Within the CNS, NIMH researchers are examining the use of the antibiotic minocycline (Dynacin, Minocin, Myrac) in children aged 3 to 12 years with regressive autism.

“We are using minocycline, a tetracycline derivative, not for its effectiveness as an antibiotic but rather for its ability to modulate the immune system,” Swedo said. “It has fairly specific effects on NF-kappa B and therefore inhibits the initiation of the cascade that leads to inflammation. Published data from the Johns Hopkins group [2,3] demonstrate that brains of individuals with autism have evidence of chronic neuroinflammation. We hope that by stopping that process, the children will be able to recover some of their skills. We are conducting an open-label trial in 10 children and are accepting referrals. If the results are encouraging, we will do a placebo-controlled trial in a larger cohort of subjects.”

Asked about other pharmacologic approaches being investigated at NIMH, Swedo responded, “We have a few in [the] pipeline, but it is premature to talk about them. Eric Hollander, MD, has been doing some work with oxytocin, reported at the American College of Neuropsychopharmacology's annual meeting.”

Hollander, chairman of psychiatry at the Mt Sinai School of Medicine in New York and director of the Seaver and New York Autism Center of Exellence, and Jennifer Bartz, PhD, found that pitocin (synthetic oxytocin), administered intravenously or nasally, may have significant positive effects in adults with autism. Oxytocin, a hormone that is best known for activity during birth and lactation, is also a brain neurotransmitter involved in social recognition and bonding.

Chelation therapy

The third NIMH study, “Mercury Chelation to Treat Autism,” seeks to address whether chelation therapy can be helpful for autism. The chelation study is a placebo-controlled trial that involves use of meso-2,3-dimercaptosuccinic acid (DMSA, succimer), an orally adminstered chelating agent that binds to all metals including mercury and lead but also to some beneficial metals, such as zinc and iron, according to Swedo. DMSA is commonly used to treat autism, with some surveys estimating that 1 in 12 children with autism has undergone chelation, although it has never been tested in a controlled study and there is no proof that it helps children with the disorder. Support for its use is based on single-case reports of benefits of chelation with DMSA.

Children aged 4 to 10 years in whom autism, Asperger disorder, or pervasive child developmental disorders have been diagnosed; who weigh at least 33 lb; who have detectable, but not toxic, levels of mercury or lead in the blood; and who have not previously received chelation therapy may be eligible for this study.

“The chelation study is based on the hypothesis that mercury toxicity is responsible for at least some cases of autism,” Swedo said. She explained that extensive controversy surrounds the issue of mercury toxicity in autism. The Institute of Medicine (IOM) conducted a comprehensive study of the question of whether thimerosal, an ethylmercury-based compound used previously in the United States as a vaccine preservative for routine childhood immunizations, contributed to the apparent increase in the prevalence of ASDs. 4 The IOM panel concluded that there was no evidence for an association, but the report has been dismissed by some parents who report “toxic mercury levels” among their affected children and who have observed benefits of open-label DMSA administration.

To answer the question in a controlled fashion, the NIMH will enroll about 120 children in the chelation study, with half randomized to placebo and half to DMSA. The trial will last for 6 months, and researchers are enrolling participants now. “We would love to receive referrals,” Swedo said, adding that psychiatrists can find out more by going to www.clinicaltrials.gov or by contacting Lorraine Lougee, LCSW, research coordinator. Lougee's e-mail address is LougeeL@intra.nimh.nih.gov.

Incidence and prevalence

Because of recurrent questions about whether autism is increasing, Swedo was asked about incidence and prevalence. “We have absolutely no data on incidence,” she said. “We can say the disorder appears to be more prevalent now than it has been reported in the past. However, there was a major change in diagnostic criteria and case-finding methods, so it is unclear [whether] it represents a true change in rates of affected individuals. . . . The CDC is conducting several studies currently to address that question.”

There is increasing agreement on what true autism is, using the Autism Diagnostic Observational Schedule, a semistructured observational scale developed to assess social interaction, communication, and play in persons suspected of having autism, and the Autism Diagnostic Interview, Swedo said.

“Those 2 give you nice, reliable cutoffs where you can say a child has autism, is on the autism spectrum, or is developing typically. Including children on the autism spectrum will increase apparent prevalence rates,” Swedo said. “The figure of 1 in 166 children having autism was recently confirmed in a CDC study that reviewed school records and confirmed the diagnosis from medical records. But the study included all children with an ASD as having ‘autism'—this included not only severely affected individuals with full-blown autism but also those with a pervasive developmental disorder not otherwise specified and those with Asperger disorder, a condition [that] is not as impairing.”

“In order to determine the true prevalence of autism and to know whether there is an ‘epidemic' as some have asserted,” Swedo continued, “we need to have better data about the current prevalence of autism and related disorders and then compare those data with comparable data from previous studies. The CDC is conducting surveillance studies at a number of US sites, and the NIH is sponsoring longitudinal investigations here and abroad to address those questions.”

References

1. Centers for Disease Control and Prevention. How common are autism spectrum disorders (ASD)? Available at: http://www.cdc.gov/ncbddd/autism/asd_common.htm. Accessed January 5, 2007.
2. Pardo CA, Vargas DL, Zimmerman AW. Immunity, neuroglia and neuroinflammation in autism. Int Rev Psychiatry. 2005;17:485-495.
3. Vargas DL, Nascimbene C, Krishnan C, et al. Neuroglial activation and neuroinflammation in the brain of patients with autism [published correction appears in Ann Neurol. 2005;57:304]. Ann Neurol. 2005;57:67-81.
4. Board on Health Promotion and Disease Prevention, Institute of Medicine. Immunization Safety Review: Vaccines and Autism (2004). Available at: http://www.nap.edu/books/030909237X/html/1.html. Accessed January 5, 2007.


http://www.psychiatrictimes.com/showArticle.jhtml?articleId=197002523&pgno=1