Some one explain the problems with Autism Speaks?

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To me its a waste of money since it is unlikely they will find a way to turn autistics neurotypical...when they don't even know what causes autism yet. But to each their own I think there are better ways to handle different neurologies than just trying to make everyone neurotypical.

.I don't see what dignity has to do with autism or lack of it. To me its more degrading to have someone telling me how I have to be when I'm not that way and trying to force it on me. And not everyone has the same burdens or difficulties........did you expect that they did? I never even brought up moral obligations I don't even see that as a factor...its just reality that some people have autism and some don't.

I've just went on about how people shouldn't try to mold us into neurotypicals....and you think I think instead they should be molded after specific autistic people? NO!....what I was suggesting is we should be accepted as autistic individuals with our own ups and downs...rather than expected to become more neurotypical.

What do you know of the concept of brain "wiring"? Why do you characterize autism as being "wired differently"?

I wish you would discuss this as a serious adult issue, and not with hackneyed rhetoric of teenage angst. I lost out on my dreams and wants cause of my position on the spectrum. Your alarmism is bunk.


You are off topic.

Even with AS I managed to get a 4 year college degree, get married and have 2 wonderful kids. was it easy? hell no but I did it. Then there is people like you who scapegoat everything you don't accomplish and blame it on whatever diagnosis you have.

The main goal of Autism Speaks is to make AS folks look and function to a NT persons view of normal.

You wouldn't know if it's unlikely or not. They know a lot so far. Those who are informed have reason to think it's possible to make a cure. There's no such thing as neurotypical.

Based on everything I've read it is unlikely...you don't have to agree that's just my opinion. Also if there is no such thing as neurotypical why is it a term in psychology?



Dependence on others and weakness are what I'm referring to when mentioning dignity.

I see nothing wrong with needing help from others, and I have no problem helping others when I can...I don't see where the lack of dignity comes in here.


What do you intend to do? You don't advocate any change at all, except for those in charge to be nicer to autistics. I don't accept my own downs. I loathe them. And I'm not a depressive. I don't venerate sadness and suffering. I like the idea of being happy.

There is a difference in opportunity between those with low-functioning autism and those with high-functioning autism/AS. The lower-functioning one tends to be, the further out of reach such goals are. Functioning is indispensable for any achievements. Many on the spectrum will never do those things as they don't have the cognitive resources to do so. Cure is to be devised to get rid of such impairments. Scapegoating? You didn't work any harder than me. So my problems are due to being lazy huh? Even though I tried so much to get my college degree, studied other related things aside from that with my own time over and over, and tried to have some vocational success, despite my sneaky impairments. I guess I just never do enough due to a moral flaw. I just don't have that virtuous Protestant work ethic. I guess I didn't consider that affluence/success is due only to work, and following from that, those who are unfortunate are only unfortunate due to laziness and are responsible and deserving of their lot in life.


The goal of cure is to serve those who are lower functioning, not aspies.

I doubt you can claim to speak for everyone who's lower functioning

Also if there is not a cure I would think they should use some of their funding to improve the lives of lower functioning people.....rather then trying to force them to just at least act normal enough for everyone else.

There is no conceivable reason why someone would want to remain impaired.

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!

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.

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

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

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. 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.

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.

There is no conceivable reason why someone would want to remain impaired.

There is no conceivable reason why someone would want to remain impaired.

Well if one is going to remain that way it is better to figure out what to do with that. But that is just my opinion I personally don't see what good becoming neurotypical would do me. I have some impairments but most of those come from the co-morbids though a lot of the autism related things make it hard for me to obviously keep up with normal job work loads and such......but in the right environment I find I function much better. But that's just me...there isn't a cure at this time anyways and if there was I probably wouldn't want it. As it would be questionable how it goes about 'curing' a different neurology.


Improve their lives? How much could life be improved while remaining that way? And for the millionth time, cure doesn't have anything to do with the concept of normal. Cure is to go from impaired and low functioning to able and high functioning.

Remaining what way, you make it sound like there's something morally wrong with being autistic...even lower functioning autistic s don't deserve that kind of stigma.

there are ways to improve their functioning especially lower functioning people with it

Being impaired is stigmatizing.


Those ways are limited right now. Improving their functioning a lot, is what cure is by definition, and nothing else.

I like that quote. For the OP, our brains are wired differently and we are just different from the majority of the population. We are not diseased or broken, and there is no cure for Autism. The treatments are all about adapting and pretending to be something that we are not and can never be. It would be like living a lie in constant denial. There is a recent thread here about would you want to be NT. The issue many brought up with this is that we would be completely different people. We would not be ourselves. our lives and abilities and accomplishments would be completely different. something like people after trauma that woke up with total amnesia and never regain their memory...

Autism Speaks wants to make ever AS person act 100% normal 100% of the time so they can "fit-in". That may look fine from the outside looking in but from the inside it would be a constant hell..
Funny I recently replied to a thread on Alldeaf.com about Deaf and Autism. Autism Speaks is similar to Oralism/ AG Bell Assn. etc. where hearing people decide that all Deaf must learn to speak and lip read and NEVER use Sign Language so they can "fit-in" and be normal... however we never will. Sign Language is our Natural Language and we are just different in that we communicate using Visual/Spacial Language which we can understand and express 100% without limitations. Not to mention that we have our own culture and rich vibrant history. That can never be done with Oralism... Yet for 100's of years hearing people have tried to force their will on us....

Normal is a four letter word IMO. Look at society today and how diverse it is.. Normal people need to learn to be accepting and tolerant of difference and different people instead of trying to make everyone like them! they do the same with things like LGBT etc too.

I also happen to be a Therian and a Furry so I am sure there are plenty of people that would say I need to be cured of those beliefs and interests too so I can"fit-in and be normal" Furrk that! I really have no interest or desire to be normal... I spent my whole life till recently trying to be what others thought I should be and I am done with it and happier since I decided to be myself instead of what others want/think I should be!

So why do geniuses need to be cured?