Stop Bashing Autism Speaks!

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Marvelous! Autism should be cured, and it should never be cured. It can be cured, and it can never be cured. It is a blessing, and it is a curse. It is a gift, and it is a disorder. If none of this makes sense to you, ask yourself, "What is my definition of autism? Is this definition shared by everyone? Is everyone's autism the same?"

^^^this.


you don't live in an autistic person's head. when he is an adult, maybe ask your son if he wants to be cured. even severely autistic people are not necessarily unhappy with their conditions. i am sure it confuses and upsets the NTs in their lives, but that doesn't make autism an inherently bad thing on a subjective level. we simply ARE... as we are. i do believe in treating symptoms if they are causing difficulty or pain or distress, but the concept of a cure is something that threatens to remove what makes me... ME.


huh, what? your statement is not based on anything medically proven. this is a contentious opinion only.

So what is autism? Give me a concrete and specific definition. The DSM classifies it a a disorder, using a list of deficits and disabling characteristics as diagnostic criteria. This is not my opinion. It is the general opinion of medical professionals.

Incorrect. A major disability that is part of autism is an inability to communicate. According to government statistics about 40 percent of children that have ASD's cannot speak. Per evidence provided from Statistics from Wiki in an earlier post, for every child that is diagnosed and or classified as HFA/Aspergers (10% of ASD's) there are four that cannot speak

In addition another 25 to 30 percent of children with ASD's speak, and then lose their ability to speak.

41% of ASD's have an intellectual disability, IQ less than 70. Cognitive deficits and Speech deficits are not co-morbid conditions with Autism, they are common part of the diagnosis, that go well beyond eccentricity in social behaviors.

These statistics are provided by the government in the US:

http://www.cdc.gov/ncbddd/autism/data.html

Indeed. Black and white thinking and absolute faith in autism as an idea is incorrect. Autism is clearly not a real unified disorder. it is a construct wherein many disorders have been slid in to because of vaguely similar base characteristics.

Fact is some people suffer and it is because of neurological issues. We unhindered, I think, suffer on account of different natures with the rest of humanity in general.

And I have spent quite a bit of time on this thread pointing out the falsity of it and the generally accusatory mood.

Despite the fact that when I look through this site people who are autistics tend to communicate more clearly than most NTs. You just keep expounding argumentum ad verecundiam that doesn't match up to experience.


Yes indeed. As if this doesn't actually deal with what is being argued at all. You talk about communication errors and stastics whilst I can talk about empirical truth. The fact is that autism is a junk taxon that people have thrown in various different disorders and phenotypes that all vaguely have communication issues and repetitive behaviours.

So then we're not Autistic if we do communicate? After all I'm diagnosed HFA and can speak quite well.

it is a disorder, and the generally (but not universally) accepted diagnostic criteria are in the DSM-IV.


diagnostic criteria != "co-morbid conditions ... [a] list of similiar deficits and disabling characteristics"


it's like saying that the common cold is actually a list of comorbid conditions, just because there is a mix-and-match list of symptoms.

EDIT: before i forget! you can actually be infected with the common cold with no subjective symptoms whatevsoever, but it doesn't mean the common cold is lacking. i suppose there is a spectrum of cold infections, all with varying degrees and types of symptoms.

Last edited by hyperlexian on 04 Nov 2011, 12:55 pm, edited 1 time in total.

I don't disagree. I think the DSM should be tossed out in favor of diagnosis based on genetic evidence. I'm only trying to illustrate that the vast majority of people in the medical profession use this criteria to define autism.

It is a vague, misleading, and easily misunderstood label.

Per the statistics I just provided from the government close to 40 percent of autistic individuals have this disability of the inability to talk and an additional 25 to 30 percent lose their ability to talk. Profciency in Verbal abilities are seen in aspergers but at this point in time Aspergers is only identified as about five percent of all cases of diagnosed ASD's in the US, per statistics from Wiki on the epidemiology of Autism.

Nostromo was only talking about his son, but the government in the US also estimates about 1.5 million children diagnosed with ASD's, which means, that if the government statistics hold true, that close to 600,000 of these children cannot speak at all, and close to an additional 300,000 of these children may lose their ability to speak. In addition, close to 600,000 of these children have an intellectual disability that puts their IQ, at less than 70.

There is no need to project disabilities on anyone, these are the facts as they exist, and they show that autism is disabling in aspects of speech and/or intellectual functioning in close to two thirds of individuals diagnosed with an ASD, as measured in government statistics.

Current research suggests that deficits in intelligence may not be as low as indicated because the tests that psychologists use rely on measures of verbal reasoning, and some of these children do much better on non-verbal measures of reasoning.

Without the research we wouldn't know this, but as a result of it, additional research can be done to tailor education and life opportunities around the strengths instead of the weaknesses. With continued research, proper education, treatments, and opportunities, what was once considered disabling can become enabling, instead, for some.

Beyond this, research also indicates it is possible that developemental issues that are impacted by the prenatal and perinatal environmental factors may be associated with speech difficulties. If research can provide the answers, there is the potential to augment environmental factors to change the outcome where the condition is less disabling for some.

This only addresses speech and intellectual deficits that are a commonly identified as part of ASD's.

The Co-Morbid conditions are spread throughout ASD's. No one with ASD's can be assured at some point in their life, that they will not be affected in someway by a co-morbid conditions of Autism. The research into these areas has the potential to help everyone with ASD's.

And beyond this, research into identification of those neither diagnosed or aware that they may even have an ASD. And research into providing proper support and services for everyone on the spectrum.

And ultimately funding some of the suport and services; but no organization can fully provide this need, the dollars are in the billions, far from the millions that autism speaks funds for their mission as stated.

Understanding the statistics and the facts as they are, hopefully can help one understand, why it is that Autism Speaks has focused on the disabling aspects of autism, that are evidenced by statistics provided from the government.

It is much more complex than what I have stated here. Autism Speaks has really had a difficult issue to understand and discern the proper direction to move in. It would have been impossible to find any type of navigation without the level of support they have received from the highly paid medical professionals that they employ, including the Chief Science Officer Geraldine Dawson.

There is likely no one that understands the issues of autistic individuals that are not disabled any better that those individuals. It is though, well beyond anyone's abilities other than those with the proper education, training, and professional credentials to try to determine something as complicated as why a child cannot speak, does poorly on one type of intelligence test and does well on another, and attempt to help them were they can fulfill their potential in life.

It's really not possible for an individual that can speak to fully understand what life is like for one that cannot speak.

It's the whole point behind the catchy phrase "Autism Speaks". The potential for the 2/3's of diagnosed autistic individuals to be able to communicate for themselves.

It's a goal that is hoped for those that cannot speak, motivated from the experience of Grandparent's whose grandson suddenly lost the ability to speak, and wanted to find out why that ability was lost, see if there was anything that could be done to bring it back, and potentially prevent it from happening to other children.

They had the power and influence to try to do something about it; it's caused some controversy for some that can speak, but if their grandson never lost the ability to speak, as some with autism don't; it's very possible that Autism Speaks would not exist today, at least not that "catchy phrase".

This is the worst comment you could reply to aghogday. There are several that make refutations of your points but your response is to tage on to an unrelated comment and avoid having to actually having to answer to the criticisms made by other people just before.


Nostromo was talking about all autistics. You don't need to get all jumpy for us asserting a truth that you now put down again.

Tambourine-Man Wrote:

Oh Thanks for pointing that out to me, I must admit that is an encouraging change.

hyperlexian Wrote:

At the moment, Autism just blurs into it's diagnostic criteria, and it's common co-morbids. It hasn't been defined as something separate from these, and it hasn't been defined as something present in the individual.

We need to seize ownership of Autism in order to change this, we should begin to decide who and what we are, or possibly do what Gedrene suggests and break it down completely and rebuild it from scratch.

Aghogday wrote:
Not being able to speak is not a communication error, instead it is the disability of not being able to communicate by speaking. Perhaps there is a genetic error that leads to the disability, but there is no definitive evidence of that to date, it is just a possible at this point that is it caused by a developmental factor from the prenatal or perinatal environment.

I have provided empirical statistical evidence established by peer reviewed scientific research done by the government in the US.

It is true that people on this internet site communicate very well, but it is representative of 20 people at any given time, many of the same people over long periods of time, with no actual verifiable way to determine if they are actually diagnosed with autism, other than our acceptance that we believe what is told to us by an anonymous source. It is also not indicative if the ones that are communicating by device are as proficient in verbal communication.

It seems obvious the people that come to this site to post are representative of the minority of ASD's as identified by government statistics but not representative of the majority as identified by government statistics.

As long as I have been here I have heard one person state that they could not talk, and could only communicate by device alone, and that same person earlier in their life could speak and was considered a gifted individual.

I'm sure there are more, but they appear to be a rare demographic on the internet that doesn't match up with the real world demographic as provided by peer reviewed statistics.

Those that have grammar and spelling issues that vary from the intellectual norm, are usually notified by someone that they should correct their grammar and spelling, even though the statistics indicate close to 40 percent of those on the spectrum have intellectual disabilities.

The question is would anyone take the time and effort to try to understand them, if they came for support? I think would it would be sad if no one attempted to understand them, but if people are more aware that they do comprise close to half of ASD's, perhaps if they do post, people will take the time and effort to understand them.

There is only one autism spectrum disorder where normal measures of intelligence are required, it is Aspergers which comprises five percent of diagnosed ASD's per peer reviewed statistical research. There is no concrete definition of HFA in Autism Disorder, other than normal intelligence, and those individuals comprise another 4 to 5 percent of autism disorders. We are talking about ten percent.

Are you suggesting that the 10 percent of ASD's that are HFA and Asperger's are the real autistics and the other 90 percent are part of a junk taxon? What is it about autistic individuals that make them part of a junk taxon?

I can inform you that its not interesting here.
I was not projecting our negative experiences on others which is why I didn't use the Autism word in my moan as I'm completely aware Autistics aren't all the same, and
doesn't this lead to what you say "Autism is a Junk taxon"?
I don't have a problem with 'Autism', just 'disabilities'. I don't hate the fact my son can't talk, I've accepted it, its just really annoying! If I could go to the Pharmacy and get 'talking pills' that would be damn handy.
I agree with the need to redefine the language around the A words. It leads to a lot of misunderstanding, and 24 page threads.