Post 4704272 - (Some one explain the problems with Autism Speaks?)

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[quote="aghogday"][quote="kill231"]To put things simple they want to turn us into NTs on the outside but it would be hell on the inside. They clearly haven't heard that most of the advances in science and art were supposedly done by people with AS or any other form of Autism. For example Einstein. He revolutionized physics and even though he helped in making nuclear weapons, he warned others of an all-out nuclear war. Thus without Einstein and others who were probably like him this world would be s lot duller.

I've heard they are looking for an "autism gene" before the child is born and then giving the parents a choice to abort the child which would greatly reduce our population.

So for all that to Autism Speaks...... It's your voice speaking, not ours![/quote]

Autism Speaks is not funding support for a prenatal test. Their research restrictions are posted on their website and it is not a part of their research goals.  The organization was also interviewed about that issue.  The organization made it clear that they are not funding a prenatal test when interviewed.

[url]https://www.wrongplanet.net/postx175074-15-0.html[/url]

[quote]4. A growing body of scientific research suggests that we are rapidly nearing the development of an amniocentesis test to detect autism, much like the procedure currently used to detect Down’s syndrome. Does funding provided by Autism Speaks in any way enable the development of such a test? If a prenatal test for autism was developed, does Autism Speaks believe that it should be made available to the public?

A: Autism Speaks is not funding any research to develop a prenatal test for autism. That is not our goal. The genetic research Autism Speaks has funded is aimed at finding biological causes, as described above. [/quote]

Autism Speaks never suggested they were speaking for individuals with autism who could speak.  The origin of the phrase is clearly explained on their website by their founder as a phrase created to give the families of children, like his grandson with regressive autism, that felt disenfranchised from the rest of the world a voice.  They neither suggested that they were speaking for the children with regressive autism or those whom could speak for themselves.

[url]http://www.autismspeaks.org/about-us/founders-message[/url]

[quote]A Message from Suzanne and Bob Wright
Co-founders, Autism Speaks

It’s hard to believe that six years have passed since we founded Autism Speaks. What began as idea to give a voice to the millions of disenfranchised families around the nation, has materialized as the largest autism advocacy organization in the world[/quote]

[quote]We created this organization because of our grandson Christian and for the millions of children in the world just like him.
[/quote]

There is a broader autism phenotype that extends much further out into the population.  Those traits are measured at up to 30 percent in studies in the US and Sweden.

There are many people likely on that broader autism phenotype, who have accomplished much in life, including people like Einstein, Bill Gates, Steve Jobs, and many others.  However all of them functioned well in life and were not evidenced as having impairments that were significant enough to impair them an important area of life functioning, per the required criteria for someone to be diagnosed with even the mildest understood form of Autism: Aspergers.  Autism Speaks does not address any individuals, per their current year research goals on diagnosis, causes, prevention, and treatment for those whom are struggling with an actual disorder or co-morbid conditions associated with that disorder, per the link and quote below from their website.

[url]http://www.autismspeaks.org/science/grants-program/open-grants-how-apply[/url]

[quote][b]Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. [/b]In support of that mission we provide funding along the entire research continuum - from discovery to development to dissemination - for innovative projects that hold considerable promise for significantly improving the lives of those affected by autism.

Autism Speaks research funding will be restricted to projects that address one of the following priorities:

Understand environmental risk factors and their interaction with genetic susceptibility to enable prevention and improve diagnosis and treatment
    
Discover biomarkers that can improve risk assessment and subtype stratification that will allow for an individualized approach to treatment

Improve quality of life through more effective medicines, behavioral interventions, and technologies
    
Enhance diagnosis and treatment of underserved and under-studied populations, specifically,
        Nonverbal persons with ASD
        Ethnically-diverse and/or low resource communities
        Adults
        Those with medical co-morbidities

Disseminate and implement evidence-based clinical practices to the broader community worldwide.[/quote]

Autism Speaks has funded research into the DSM5 current revision on the new diagnostic criteria for autism spectrum disorder and recently provided the following recommendations to that organization, in regard to potential concerns of those across the spectrum:

[url]http://www.autismspeaks.org/blog/2012/06/11/dsm-5-update-our-letter-revision-committee[/url]

[quote]Dear members of the DSM-5 Neurodevelopmental Disorders Work Group,

Autism Speaks is the world’s leading autism science and advocacy organization, representing hundreds of thousands of individuals and families affected by autism. We recognize the need for diagnostic criteria for autism spectrum disorders (ASD) that reflect our current scientific understanding and progress and define the wide range of symptom expression associated with this disorder. In the end, however, these are criteria about people who have symptoms that can be helped considerably by services aimed at improving their ability to function in the world. Thus, any revision of the diagnostic criteria must be made with great care.

There is great concern by many members of the autism community, including parents and individuals with ASD, that some individuals with ASD might “lose” their diagnosis based on the revised criteria. Another concern is the impact of changes in diagnostic criteria on prevalence estimates and the ability to have accurate estimates of changes in prevalence over time. A number of published studies have reported that a percentage (ranging from 13-39%) of individuals, mostly with higher IQs and less severe symptoms, would no longer meet the criteria for ASD under the new DSM-5 guidelines. For the most part, these studies have used a retrospective design, with reexamination and review of charts from different sources. Field trials, which involve face to face evaluation, have not demonstrated such a disparity. Although the field trials are encouraging, the sample size used for the field trials is relatively small (N = 83 children with ASD) and only involved pediatric populations. Additional prospective research based on larger samples, diverse ethnic backgrounds, and a wider age range is clearly needed to provide more definitive answers. In this letter, we raise several issues which we respectfully ask the committee to consider:

1.        Need for additional prospective data comparing DSM-IV and DSM-5 criteria.  Additional prospective data based on larger samples, diverse ethnic backgrounds, and wider age ranges are clearly needed to provide more definitive answers. We have very little information about the impact of the new DSM-5 criteria on diagnosis of very young children, adults, and individuals with different ethnic backgrounds.  The current criteria should be considered provisional and open for future revision until more definitive research is conducted.

2.        Need for clear guidance re: retention of previous ASD diagnosis of symptoms. We request that the committee make it clear that it is the opinion of the American Psychiatric Association (APA) and the Neurodevelopmental Disorders Work Group that all individuals who currently have a diagnosis of ASD (including all subgroups of DSM-IV pervasive developmental disorders) should retain their diagnosis for purposes of qualifying for needed clinical and educational services.

3.        Need for clear guidance re: continued use of the diagnosis of Asperger syndrome. The committee has noted in previous communications that people with a current diagnosis of Asperger syndrome will be able to have that diagnosis indicated in their medical/educational record as part of the list of “specifiers.” This will allow persons to retain their identity as persons with Asperger syndrome and facilitate continued research on such individuals. We request that the APA and the Neurodevelopmental Disorders Work Group make it clear that this option is possible for people with Asperger syndrome.

4.        Need for more information for clinicians on use of specifiers. The clinical specifiers have enormous potential to be used to describe specific subtypes of ASD, including those with limited language function and intellectual disability, known etiologies, history of regression, and medical co-morbidities, such as seizures and GI disorders. We urge the committee to provide more specific instructions for clinicians on how specifiers should be defined and recorded. Without additional guidance, clinicians may not use these important specifiers that have clinical implications for persons with ASD.

5.        Concern that the criteria are overly strict and may exclude those with an existing diagnosis. Multiple studies have reported the excellent construct validity of using a two “factor” model for autism symptoms, rather than the DSM-IV three “factor” model. However, we remain concerned that the requirement of three symptoms in the social communication category and two symptoms in the restricted repetitive behavior category may be overly strict and result in exclusion of persons with ASD. Studies in which specificity and sensitivity were evaluated indicate that relaxing the number of observed symptoms in either category has minimal effects on specificity while increasing sensitivity. For very young children, in particular, the requirement for two symptoms in the restricted repetitive behavior domain may be problematic. We request that the committee consider relaxing the criteria. We recommend that these criteria be considered provisional until more data has been collected to examine their impact on diagnosis.

6.        Need for monitoring of the impact of the DSM-5 criteria in real world settings. As described above, there is a clear need for more information about the way that the DSM-5 will affect people’s lives in real world settings. We request that the committee recommend ways in which information regarding the impact of the DSM-5 on diagnosis and access to services can be broadly tracked. The ultimate reason for diagnostic criteria is to improve the lives of people with ASD. It is crucial that the impact of the proposed changes be closely monitored and assessed.

On behalf of people affected by autism and their families, we urge you to consider these issues in your deliberations as you finalize the revised criteria for diagnosis of autism spectrum disorder.[/quote][/quote]

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