On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’
Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.
The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.
The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.
The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.
2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.
2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.
2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.
The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.
And these are the people who claim to be the autism community?
The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.
These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.
Left Brain Right Brain 
The ‘autism’ community is a diverse community. No one can claim to represent the ‘autism’ community. Nither the vaccines cause autism, nor the mercury causes autism nor the genes cause autism nor the neurodiversity crowd that trivializes a profoundly handicapping developmental disorder represent the entire community though all apparently cliam that they alone represent the true interests of the entire autism community.
RAJ you are absolutely right.
Amen… in jewish terms!
Well RAJ you’re half right. No one single group can lay claim to being ‘the’ autism community (but only one group is trying anyway).
However, your claim that neurodiversity is trivialising autism is groundless – unless you have some specific irrefutable example of course.
Neurodiversity encompasses more than simply autism by the way.
However, your claim that neurodiversity is trivialising autism is groundless –
as is the
“cliam that they alone [“the neurodiversity crowd”] represent the true interests of the entire autism community.”
RAJ is simply doing his HFA/AS isn’t autism so STFU.
Perhaps if he’d like to give us the neurological/genetic/behavioural diagnostic markers that would differential between the various conditions, I’m sure that not only we, but the whole of the scientific community would be most grateful.
btw RAJ, Kanner’s first “specimen” Donald would be by today’s standard HFA – so perhaps your gold-standard autism researcher isn’t quite the demi-god you set him up to be.
Also, RAJ’s claim that neurodiversity proponents have purported to represent the “autism community”, just like AoA and the like have, is unsubstantiated. I’d like to see a link that shows this to be the case.
Indeed kev, there are countless people who claim to have seen the ‘ND crowd’ trivialise autism.
So far not one has managed to provide a single example. This failure wouldn’t actually be that bad, but as their main sources tend to be personal blogs – and personal blogs are excellent places for people to post ill-thought-out emotion driven personal statements – they should be equipped with literally thousands of examples.
Yet one is never, ever forthcoming.
That should tell you something.
claiming that bill gates, albert einstein thomas jefferson, are/were autistic is trivializing autism. Saying autism should not be called a defect or devestation is trivializing autism. Janet Norman Bain’s (jypsy’s) son claiming to run for but not against autism in his running endeavors is trivializing it. Larry Arnold claiming that using the term “healthy” to describe controls in autism research being offensive is trivializing it. Those are four examples right there. How many do you want?
Jon – I don’t see how any of these trivialise autism. Maybe you could clarify? Further I don’t see any of these people you name speaking or claiming to speak for anyone else.
I think that yourself, RAJ, Harold et al are incapble of seeing any shade of grey. To you all it seems to be a terrible disorder and nothing else. Is that accurate? To me that trivialises the wide differences of autistic people such as you, Michelle Dawson etc.
Except you’re wrong, Jon. The term “to trivialize” means “to make something seem less important or complex than it is.”
None of your examples are clear indications of trivialization. You may think, for example, that autistic people are inherently unhealthy, but that’s just your unsubstantiated opinion. So there’s no trivialization there, since many of the realities of autism are neither clear nor agreed upon.
An example that actually means what you think it does would be helpful.
Claiming that people with traits of autism might be autistic is not trivialising autism, unless you follow the bizarre idea that not explicitly mentioning the ‘lower’ end is equivilant to deliberate shunning.
I doubt mentioning type 2 diabetes, or early stage dementia would have you screaming about ‘trivialising late-stage dementia’ or ‘trivialising type 1 diabetes’, so there’s no reason why you should apply that rule here.
Asking for respectful language is not trivialising autism, in fact it’s merely asking to be in line with the ethical use of language around people with other conditions, such as diabetes, dementia, Down syndrome etc. This isn’t ‘trivialising’ it’s professional use of language.
I’m not even sure where you think you’re going with the third example. It looks like you threw it in to get a even number.
I’m sure Larry’s point is significantly more complex than you’re presenting it here, most likely involving a critique of the authours concept of ‘healthy’. Pointing out that one can have autism and still be otherwise ‘healthy’ is not trivialising autism, it’s combating the idea that being autisitic equates to having a sick role and being nothing but that sick role. Totally different ideas, as Larry doubtlessly explained comprehensively in the original text.
How many do I want? One that exists outside of your head might be a good start.
Joseph said “Except you’re wrong, Jon. The term “to trivialize” means “to make something seem less important or complex than it is.””
And if we take this definition, then by slating the ‘ND crowd’ everytime the ‘ND crowd’ point out the ‘upper’ end of the spectrum, the ‘anti-ND crowd’ are trivialising autism.
By ‘keeping it real’, they are actually doing anything but.
It is possible that Gates and Einstein have/had higher functioning autism. Who knows?
http://www.youtube.com/watch?v=wRRNeAilrnM
http://www.youtube.com/watch?v=XTfWAZVd-Bo
Diseases are usually defined by cut-off points of a normal distribution curve i.e. the bottom or top 3% of the curve have a “disease” or are “ill”, the other 94% are “normal” or “healthy”. Obviously, there will be similarities between “disease” and “non-disease” states especially those on the edge of the cut-off lines, and those who are in the process of moving from one point on the curve to another as with diseases which progress with age e.g. impaired glucose tolerance to diabetes mellitus or mild cognitive impairment to Alzheimer`s disease.
“Disease/health” appear to be statistical terms depending where one is on a normal distribution curve.
kev wrote:
just wanted to reiterate that.
Another reiteration – I am not claiming anywhere in this post that I, anyone I know, or the neurodiversity community in general are *the* autism community.
Jon
I see exactly how the examples you listed trivialize autism. Thank you for speaking out.
Could you please explain? Especially the one about my son.
Harold,
Rather interested to see you here. No guilty conscience about your own censorship I see. No useful comments either. Must be a boring if snowy Sunday afternoon for you.
Joseph,
Your definition of Trivilize is pretty narrow. Trivialize can also mean to make something less significant or less important.
alyric,
“No useful comments either.”
Like reading in a mirror eh?
Alyric, it was 20 degrees here today! No snow, just rain and high winds. Don’t imagine Fredericton was too much different.
Schwartz, by your definition the comment about my son still makes no sense to me. If it does to you perhaps you would explain?
jypsy,
You’ll have to get jon to explain that one. That example isn’t obvious to me either.
jypsy,
We had snow in TO today @ ~2C. The snow weather is coming…
“Another reiteration – I am not claiming anywhere in this post that I, anyone I know, or the neurodiversity community in general are the autism community.”
No, but they are a *part* of the autism community — just like the tens of thousands of families who embrace the message of Generation Rescue; they too are a *part* of the autism community.
Why is this so difficult for you to understand Kev???
I think the fact that 11 different organizations signed on to the letter is evidence enough that there are *multiple voices* within the community — otherwise, we would have just signed it under one name.
Bottom Line: No one is stopping you from advocating for your child. Likewise, no one is going to stop me from advocating for my child.
End of story.
So when someone says that autistic adults don’t exist, would that be a good example of the trivialization of autistics?
How about when someone says that autism is just another disease, and the way you deal with it is by finding its cause and its cure? Doesn’t that trivialize the complexities of the construct? Doesn’t it trivialize the value of the lives of autistics who exist prior to the theoretical cure? Doesn’t it trivialize the complexity of a problem which could easily be comparable to, say, the reversal of aging?
How about when someone says that all autism is mercury poisoning or vaccine damage? Is that trivialization?
“Joseph,
Your definition of Trivilize is pretty narrow. Trivialize can also mean to make something less significant or less important.
”
Which still doesn’t help Jon and Harold a bean. Of the examples given, the only one that comes close to this is the second one.
Taken alone, it’s simply a request for respectful language. It’s usually given in the context of ‘autism isn’t a defect – it’s a difference’. This seems to trivialise autism at first, until you realise that the authours do not deny impairments, but the automatic labelling of autitic traits as impaired.
It’s a massive world of difference.
Joseph,
All of your examples count as trivialization in my book. I didn’t say your definition was wrong, just narrow.
Dedj,
I can see a case where example 1 can be viewed as a trivialization although it is not necessarily the word I would have used to convey the message I think he was attempting.
I also see how he can make a case for example 4, in a similar vein to example 2. This is all dependent on perspective of course.
I don’t think a case can be made for no.1, as recognising less conventional presentations of a condition is not the same as claiming all presentations now represent a less severve condition.
I think he may be attempting to say that it runs the risk of creating a false image of people with autism as merely being ‘quirky’ in the eyes of the public. This is still not trivialising.
Not sure what you’re getting at with number 4, as I’m having trouble finding Larry’s original post.
Example 1 is a question of fact. It matters one iota (scientifically) if it’s convenient or not, perceived as good or bad, etc.
The same is true about widely replicated findings in regards to autistic strengths. These are usually… trivialized. That’s probably the right word to describe it.
If example 2 is trivialization, then most Down Syndrome associations have evolved to become guilty of trivialization. Google “down syndrome is not an illness.” See also: “dwarfism is not a disease”, “cerebral palsy is not a disease”, etc. Don’t you think there’s some sort of practical purpose to these types of statements? There is. Think about it.
Ahh , sorry, my last post reads differently to what I intended.
Autism = quirky would trivialise autism. But the main gist of ‘Einstein = autistic’ seems to be to point out that a person who seems wierd, creepy or strange could actually be autistic, and that success in one area does not equal to no impairments in others.
When people deny the lived experience of people like Larry simply because he can talk well, then they are trivialising autism.
Dedj,
It depends on how you interpret the intention of making those speculations on Autistic adults. I can certainly see how some people will interpret those famous examples as attempts to show that Autism is not a big deal or less significant.
For number 4, I’m assuming that the person is objecting the use of the term “healthy” in controls because they feel that implies the study group (those with Autism I assume) are not healthy. From that perspective, it starts to look very much like example #2.
“will interpret those famous examples as attempts to show that Autism is not a big deal or less significant.”
Which is strange, as those examples are usually made by pointing to odd and/or impairing behaviours. As I understand the speculation, it is based on pointing out that the examples weren’t flawless geniuses, but actually had some major issues.
Example 4 seems to strike me as an attempt to prevent the idea that autism makes a persons gestalt/holistic wellbeing ‘not healthy’ , and instead points out that they are simply impaired in certain areas.
Opposition to this form of labelling is well under way in other conditions, including asthma, dyslexia and diabetes. There’s no reason why autism should be left out.
Alyric, the weather in New Brunswick today was mild and wet. I am happy to see you are taking a break from your “defamation” campaign.
Kelli Ann you have answered the question posed in the title of this blog comment very succinctly and accurately. It should not be hard for anyone to see that there are in fact multiple voices – with different perspectives – in the “autism community”.
What I’ve learned from this discussion is that RAJ, Harold and Jon trivialize the neurodiversity movement; and Kelli Ann trivializes the co-opting of the term “autism community.”
I have no idea what Swartz does 🙂
I’ve learned that 2 men here can spout crap about my son but neither of them will stand up and back up/explain their comments.
Joseph, by your account anyone who does not subscribe to the Autism Hub/neurodiversity perspective is trivializing autism.
jypsy I did not interpret Jon’s comment about your son’s “running FOR autism but not against it” is not “spouting crap” about your son.
Saying that one is FOR autism, a neurological disorder, which for some people results in very dire life circumstances, does trivialize autism.
If your son, or you on his behalf, make such public statements then you or he have entered the public discussion and others are entitled to disagree.
Kelli Ann – here is the title of the blog post discussing your letter:
_”Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research”_
You are not _the_ autism community. You are a single issue pressure group with no interest in autism beyond vaccines. Sign all the letters you like but please do not misrepresent yourself and the others in the autism community which is _not_ united in expressing disapproval of the NIH plan.
Further, please refrain from claiming there are ‘tens of thousands’ of people in the autism community who ’embrace’ the message of your organisation. That is:
a) Highly unlikely (do you keep membership files? Who are these tens of thousands?)
and
b) an appeal to numbers.
I’ll also take your poll and raise you:
_”Saying that one is FOR autism, a neurological disorder, which for some people results in very dire life circumstances, does trivialize autism.”_
Thats an opinion Harold, not a fact. I personally think that anyone who solely sees autism as a disorder is trivialising autism. Am I right and you wrong? Are you right and I wrong?
How anyone can be dumb enough to say that anyone else is trivialising something that scientifically we next to nothing about is beyond me. To me it speaks of a fairly large ego to say that others who disagree with you are automatically wrong ‘just because’.
Harold, Jon, RAJ. You need _reasons_ for your opinions if you expect them to carry any weight.
“Saying that one is FOR autism, a neurological disorder, which for some people results in very dire life circumstances, does trivialize autism.”
You missed a very important word – RUNNING for Autism.
By your logic, lets see who else trivializes autism:
Geneva Centre for Autism
Together for Autism
PATHFINDERS FOR AUTISM
MAAP Services for Autism and Asperger Syndrome
Unity For Autism
Center for Autism and Related Disorders, Inc. (CARD)
Autism Speaks’ Walk Now for Autism
Tucson Alliance For Autism
ART NOW FOR AUTISM
Judevine Center for Autism
Doug Flutie Jr. Foundation for Autism
Actors for Autism
The Scottish Society for Autism
DFW Center for Autism
Provincal Outreach Program for Autism and Related Disorders
etc., etc., etc.
As a start RAJ, here’s DSM-IV-TR criteria for Asperger’s Disorder, something that you seem to claim doesn’t exist:
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity
2. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
Could you tell us how this bogus and fictitious disorder has got the AMA in its thrall?
Until my last comment gets out of the spam trap or wherever it landed, may I say you (Mr. Dogerty) are very much trivializing Alex’s advocacy work. As much as Mr. Doherty praises the work of Dennis Debbaudt and insists we deny the very dangerous, even deadly, situations that autistics can get themselves into or find themselves in, he never mentions that it was Alex’s running FOR autism that brought Dennis here to train PEI’s Law Enforcement, First Responders, Educators, Medical Personnel, Parents, autistics, etc etc etc on Autism Safety, Recognition & Response. His weekly running message is no less important. Why don’t you ask “Freddie Beach Pete” (A Fredericton NB runner) if Alex trivializes autism. He’s met and run with Alex on more than one occasion.
Harold, defamation is apparently everywhere, somewhat hard to avoid. And the weather in Ottawa is snowy, though wet and disinclined to stay. Nice though, after endless grey drizzle.
In my view the people most apt to do the most most amount of damage to autistic prospects for any kind of life aren’t those trivialising autism but those dishonestly sensationalising autism. Have you never noticed that the Downs folks don’t do that for their clientele. Somehow even for the most compromised of their people, they manage to convey that with respectful attention you will get the best for them. Why cannot autism advocates do the same?
Also when you attack Alex Bain for again some of the most basic and good work FOR autism, work that doesn’t even need to get anywhere near this stupid LFA/HFA dichotomy, what kind of an advocate are you?
Doherty wrote:
“It should not be hard for anyone to see that there are in fact multiple voices – with different perspectives – in the “autism community”.”
I thought this was settled years ago, when I pointed out to Phil Shwartz on Advo that “they” had already irrevocably usurped the term “autism community”, and there was nothing we could do to get it back.
In the sense that “they” use it, (Harold and his ilk), “autism” means, “of, about, or peripherally related” to autism. Our experience is far more direct, we don’t claim to “have autism”, but “are autistic”. I realize it’s a fine line, a difference of a couple of letters, but the difference in meaning is certainly there.
Be realistic, we’re not going to wrest the meaning of “autism community” away from the hysterical parents, do-gooder celebrities, ABA “therapists” who are in it for the money, or established “Societies” who already have the term on their letterheads.
We’re the “autistic community”, and that’s something they can’t (and won’t try) to claim.
Dedj,
I can certainly see your point of view, especially on example #4. The term “healthy” is pretty stupid and I’d be willing to bet accounts for a very small percentage of the overall population.
To be scientific and accurate, a more specific term should be used in studies.
I also can see your perspective on comment #1, but I think you’ll find that there would be widespread differences in perspectives on that one. I think it’s fair to say that anything that promotes the misconception that all autistics are high functioning can be seen as trivializing Autism to some degree.
“I think it’s fair to say that anything that promotes the misconception that all autistics are high functioning can be seen as trivializing Autism to some degree.”
OK, so who actually makes such a claim?
Hint: no one.
It’s a blatant strawman erected by those who disparage autistic self-advocacy: small-minded people afraid of losing their hegemony over the politics and economics of autism.
I still have a comment sitting in moderation listing a good number of organizations “for autism”, including Doug Flutie’s (shame on him!). I can hardly wait to see it posted and Mr. Doherty’s response…..
Now I have 2 comments in moderation….
“As a start RAJ, here’s DSM-IV-TR criteria for Asperger’s Disorder, something that you seem to claim doesn’t exist”
Name one of the isolated symptoms in that diagnostic criteria that is not found in varying degrees in all neurologically impaired people or people with emotional poblems who would have qualified for any number of diagnostic categories prior to 1994 and the lumping of all sorts of impairments that carry a new fashionable label of Asperger’s Syndrome. There are none. What comes under the umbrella of Asperger’s Syndrome is a large group of people who in the 1950’s were labelled ‘brain-injured’ children. Asperger’s Syndrome is nothing more than diagnostic substitution which Kanner has already explained in 1965:
http://neurodiversity.com/library_kanner_1965.html
Not all in research groups have embraced the existence of ‘Asperger’s Syndrome’as a distinct diagnostic category either:
http://www.ncbi.nlm.nih.gov/pubmed/11411788?
The trivialization of a profoundly handicapping condition is further reinforced by the likes of Baron-Cohen and his Autism Qoutient Test which is nothing more than a personality test.
So here is another question for you Socrates, name one of the isolated symptoms in DSM-IV-TR Asperger’s Syndrome that is unique and is not found in a host of neurologically or emotionally impaired people who carry any number of other labels. The first question I challenged you to answer, you still remain mute on.. Name one genetic variant that ’causes’ autism.
You have never responded to the first question, other than you are right I am wrong and I should shut up and go away and I don’t expect you will respond to this new challenge either.