Five-percent of nothing

25 Dec

To paraphrase Mark Twain, a phony statistic will travel half way around the world before the truth can get its boots on – and even further when the phony statistic is hitched to the wagon of vaccine denialism.

A case in point: last June, blogger Amy Lutz  launched a broadside against neurodiversity with the following alleged quote:

Dr. (Lee) Wachtel estimates that “less than five percent” of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. “Most are not going to grow up to be Temple Grandin,” she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder…

Wachtel is a child and adolescent psychiatrist at Baltimore’s Kennedy Krieger Center. Lutz didn’t explain what it means to “participate” in neurodiversity, nor did she reflect on the fact that most kids don’t grow up to be Temple Grandin anyway. “This article by Lutz … has the appearance of journalism, and quotes a doctor in support of Lutz’s contention that neurodiversity is a bad thing, overall,” notes autism blogger Kim at CounteringAgeOfAutism, who tracked down the source of Wachtel’s alleged quote. “It doesn’t help that Lutz doesn’t seems to understand what neurodiversity is.”

Lutz’s post raised a few eyebrows. Commenter Jen Niebler wrote ND is not about “marginalizing the ‘real autistics’ – it’s about listening to all autistics and how they wish to be treated.” LBRB founder Kevin Leitch commented “A total misrepresentation of the ND viewpoint who (as I am one, and parent to a severely autistic child I am very aware of this) consider autism a disability AND a difference. Did the author talk to anyone from the ND community before writing this?”

Eventually Wachtel’s quote faded into the ether, only to be resurrected six months later in a comment at about.com, where blogger Lisa Jo Rudy worried that Ari Ne’eman’s recent nomination to the Council on Disability might not sit well with the anti-vaccine crowd. Commenter LoopyLoo wrote:

I’m frustrated and worried. High-functioning, highly verbal people with autism have just about zero in common with my severely impaired, non-verbal child. I’m glad that things have worked out so well for him, but in the general population of people with autism only about five percent will ever be able to participate in a movement like neuro-diversity. Acceptance of/for people who aren’t NT is a fine and lovely goal, but I’d rather have a cure.

When asked to source the “five percent” figure, LoopyLoo pointed to Wachtel. But a query to KK’s media relations office tells the rest of the story:

Regarding Dr. Wachtel’s quote, her comments were pulled from a conversation that she had with a parent. She wasn’t aware that they would appear on a large web site as was the result. Her comments were also made relative to the severely impaired patient population that she sees. The majority of these patients can be described as she did in her comments, but the full context of the discussion would include mention of the fact that advances are happening in the field of early intervention which may change outcomes for toddlers who are being newly diagnosed today at age two or earlier. Also – she does not have a citation or reference for the “less than 5 percent” reference. Again – it was a casual comment made to a parent, and within the context of her patient population.

In a follow up email, KK characterized Wachtel’s words as “casual comments made relative to Dr. Wachtel’s daily frame of reference – her severely affected patient population.” In other words, the five percent figure does not refer to all autism spectrum disorders.

The blogger, Amy Lutz, confirms the quote came from her private conversation with Wachtel, and she stands by it. “I asked Dr. Wachtel to approximate, based on her seven years of work in autism treatment and research, the percentage of diagnosed autistics who could actively participate in a political movement – because, as we all agree, there is (sic) no data in the scientific literature to answer this question,” said Lutz in an email. “Her answer, five percent, is, as I explicitly stated in my essay, an ‘estimate.'”

In a perfect world, a throwaway quote by a careless writer wouldn’t matter. But in our wired, interconnected world, poorly sourced quotes are sustenance for ideologues.

The premise here – that only the highest functioning autistics can “participate” in neurodiveristy –   would be news to many of the pro-ND bloggers who are significantly disabled, notes autism blogger Sullivan. “The fact of the matter is that everyone (autistic/non-autistic, all levels of disability) benefit from neurodiversity.”

As anti-vaccine activists and other line up to oppose Ari Ne’eman’s nomination, we are sure to see more inaccurate and self-serving definitions of neurodiveristy. And it’s a safe bet that the “five-percent” quote will surface yet again.

21 Responses to “Five-percent of nothing”

  1. kwombles December 25, 2009 at 04:55 #

    Hopefully, while we won’t be able to convince those most staunchly against the idea of neurodiversity they are wrong, we can at least be vocal in countering the misinformation so that those who are truly interested in accurate information can get it.

    It never fails to amaze me at how hard some of these folks like Mitchell argue against a concept that is about the acceptance and inclusion of those with disabilities as full, participating members into society. Neurodiversity, at least to me and most of those I know who believe in it, is about the removal of stigmatization of those who are different. It really shouldn’t be a hard sell.

  2. Socrates December 25, 2009 at 12:11 #

    If you painstakingly sift through the various categories of Autism presented Baird’s 2006 study on childhood prevalence, I get a figure of around 70% – rather than the Quack’s 5%.

    Would someone more au fait with Science check that out for me?

  3. farmwifetwo December 25, 2009 at 13:45 #

    How can non-verbal autistics tell anyone how they wish to be treated.

    Those that claim to speak for them have never spent the time getting to know them.

    The most vocal of the ND movement have lives. Sarah has a boyfriend, Ari has a girlfriend, others are married. All can speak for themselves.

    Claiming to speak for a group is WRONG. Claiming to speak for ANYONE is WRONG. Unfortunately in this culture of cultures – gay, black, native, autistic, deaf…. It’s the vocal minority that gets heard…

    So, what does my youngest want??? I’m curious…. And don’t tell me “respect”… What does he want??

    • Sullivan December 26, 2009 at 17:50 #

      How can non-verbal autistics tell anyone how they wish to be treated.

      Those that claim to speak for them have never spent the time getting to know them.

      Farmwife, your ignorance just astounding. Your assumptions are even worse.

      How can you claim to understand or speak for people you clearly don’t understand–like parents and autistics who believe in rights for autistics? Seriously, you clearly don’t have a clue as to what you spout on about.

      You claim to speak for (or about) a group you have no understanding of all the time in the comments of this blog. WHy don’t you wait until you at least understand before posting another comment?

  4. KA December 25, 2009 at 18:26 #

    If Wachtel’s description of autism fits my Asperger’s Social Group demographics (more than 2 dozen folks with AS), are we unrepresentative?

  5. navi December 25, 2009 at 20:42 #

    My son can’t ‘participate,’ but I can participate for him, and his reactions to how people deal with him most definitely tell me he wants acceptance.

  6. Astrid December 25, 2009 at 21:18 #

    My inclination is that anyone who uses statistics to base political arguments on autism upon, is in one way or another biased, due to the extreme heterogeneity within the spectrum of autism. When Harold Doherty recently blogged that 80% of people diagnosed with “autism disorder” have intellectual disabilities, even if that figure came from the CDC as he claimed, it would still be biased. After all, the line between autistic disorder and Asperger’s is arbitrary, and people with intellectual disabilities should per current criteria not be diagnosed with Asperger’s, yet Asperger’s is viewed to be more common than autistic disorder (I can’t remember the statistic here). On the other hand, if a neurodiversity activist pulled out favorable statistics on, say, independent living outcome from some study, one could always complain that this study was too small or not representative.

    Besides, what is the point of statistics anyway? Neurodiversity is about acceptance, not about proving we are capable enough to be accepted (or it shouldnt’be at least).

  7. Lisa December 26, 2009 at 00:35 #

    I’ve noticed that quite a few people like to look at kids with autism and ask “will he be able to go to college? live independently? get married?”

    My retort: “gee, I don’t know… how’s your son’s job search coming along? And I hear your daughter’s divorce is almost finalized!”

    Bottom line: few of us are Ph.D.’s, international speakers or major government appointees (Temple Grandin, Stephen Shore, Ari Ne’eman). Does that mean we can’t manage our own lives? Well… maybe.

    Neurotypicalness isn’t a guarantee of squat!

    Lisa
    Join my Autism at About.com Facebook Fanpage</a?

  8. Clay December 26, 2009 at 05:16 #

    KWombles wrote:
    “It never fails to amaze me at how hard some of these folks like Mitchell argue against a concept that is about the acceptance and inclusion of those with disabilities as full, participating members into society.”

    But you have to realize, that any fecalphiliac like that is bound to have strange ways of thinking about other things, as well. 😉

  9. Visitor December 26, 2009 at 15:06 #

    Never mind. Half the population has a below-average intelligence.

  10. Joeymom December 26, 2009 at 15:33 #

    Isn’t complaining about neurodiversity, which only asks that people accept autistic people as people, kind of like complaining that we shouldn’t accept deaf people as people, because they are deaf? Because we lived in that world not that long ago…

  11. David N. Andrews M. Ed., C. P. S. E. December 26, 2009 at 16:03 #

    “Half the population has a below-average intelligence.”

    Actually, less than half.

    Average range is usually defined as having a z-score between (but not including) -1 and 1; the units are dimensionless, and are called standard deviations. Included in 1 s. d. from the mean, either way, is 34.2% (or so) of the population of scores, and below the mean (or above it) falls a huge 50% of that score population. So, average or below actually includes an overall IQ score of 85, which is just about the 16th %-ile. Since below average is 85 or under (in IQ score terms), and that is at about the 16th %-ile, only 16% of the population can be seen as having a ‘below average intelligence’.

    So, for those who are of average intelligence of above, and who don’t actually understand what this ‘neuro-diversity’ is that they are so dead-set against (and who cannot use ‘below average intelligence’ as a defence)… what’s their excuse?

  12. Visitor December 26, 2009 at 18:48 #

    David,

    I’m so sorry to disappoint you again, but it was a joke, told to me by a professor of medical statistics.

    Nevertheless, if you take a moment to Google “average intelligence”, you’ll be able to sort yourself out. This one might start you off:

    http://www.iqcomparisonsite.com/IQBasics.aspx

    If you think that only 16% of the population are of below average intelligence, you may need to pay special attention to the word “average”.

  13. Kev December 26, 2009 at 23:12 #

    How can non-verbal autistics tell anyone how they wish to be treated.

    Such a desperately sad thing to ask when one considers that speech is far from the only method of communication open to people, including autistic people, and when one also considers that wishing to be treated with dignity and respect should be the basis for how anyone should be treated. This is the bedrock of neurodiversity in my opinion and it constantly befuddles me how anyone associated with autism would desire to do this point of view harm.

  14. lilandtedsmum December 26, 2009 at 23:14 #

    Farmwifetwo

    “Those that claim to speak for them have never spent the time getting to know them.”

    There are plenty of parents of non-verbal autistic children who support neurodiversity. Are you suggesting that they have never spent the time getting to know their own children? Neurodiversity is basically about respect and acceptance for autistic people. I’m interested as to why you wouldn’t want that for your child?

  15. David N. Brown December 27, 2009 at 00:11 #

    This sounds like an example of the “phantom quote” phenomenon. The most prcise figure I have seen for “nonverbal” autistics is 27% (which I am inclined to put at a third for purposes of discussion). Thus, about two-thirds of those on the “spectrum” have at least the bare minimum of skills to communicate their needs.

  16. Mike Stanton December 27, 2009 at 01:54 #

    FarmWifeTwo asks

    “So, what does my youngest want??? I’m curious…. And don’t tell me “respect”… What does he want??

    My experience of working with non-verbal children both on and off the spectrum suggests to me that what these children really want is for us to recognize their attempts to communicate with us, to learn their “language” even if it is non-verbal, and to respond as best we can. every interaction with a child involves communication and there are lots of protocols out there which take as their starting point that all behaviour is meaningful. Examples are Floortime, Intensive Interaction (not to be confused with ABA), Options, the Hanen Programme. If we respond appropriately we can lay the basis for more conventional communication using symbols, signs and spoken language.

    The important thing is adopt the view that all children act with communicative intent and it is up to us to be sensitive to their attempts and not start by insisting on conventional language. I remember one autistic adult who said that she learned to speak before she learned to communicate. speaking is an action. Communication is an interaction.

  17. David N. Andrews M. Ed., C. P. S. E. December 27, 2009 at 02:52 #

    “If you think that only 16% of the population are of below average intelligence, you may need to pay special attention to the word ‘average’.”

    So, Visitor… you think you’re so clever… eh?

    Did you train in the use of tests? No?

    I did.

    “Average” has a good few meanings, and one has to be clear about what average one is talking about.

    One average is the mean (well, the arithmetic mean). This is the sum of the data points divided by the number of data points. The problem with this one is that it may give you an “average” that doesn’t exist in your data set.

    Another is the median: this is the centre-most datum in your data set. This, if you have an even- numbered data set, and your two mid-most data points are not equal, will also give you an “average” that does not exist in your data set.

    A third one is the mode: this is the data value that occurs the most frequently and therefore always gives a value that exists within your data set.

    I think this might suggest that I know more than you think I know about what a fucking “average” is. And yes… this is without the aid of a fucking textbook: I teach this stuff when I’m supervising students on postgraduate research methods courses and doing their Master’s thesis. You need to stop being a smart-arse: you’re not impressing anyone.

    Secondly, the classifications in testing are as follows:

    Normal limits are between z=-1 and z=1. This is defined. This is the range of scores from 7 to 13 (not inclusive) on standard score scales and between 85 and 115 (again, not inclusive) on standard indices. These scores are seen as being within the average range. This is one way of looking at it, and – regardless of whether you like it or not – that’s how it is. The middle 68% (or thereabouts) are routinely seen then as being within the average range. The system you’re talking about is based on the 1st – 3rd inter-quartile range, which sees the middle 50% as being “average”. This is another system. But it is not the only one. You seem to think it is. I don’t care: that’s your idiocy showing through. Get a life, Visitor.

    Because not all tests of ability use the classifications give in the Wechsler and Stanford-Binet tests, and because – when I administer tests – I use more than the Wechsler, I use the system of defining average as being within the z-scores minus 1 and 1. This is not “wrong” – as you would seem to want it; it is just different. So, get a grip. Stop being an arsehole and stop harrassing me on things.

    From what I’ve seen of you on here, I get an impression of someone who sits at his/her computer and thinks of ways to have a go at autistics who have managed to get into some field of professional practice and then try to find ways to undermine their confidence. Got to say… that’s very trollish behaviour, and I doubt that many here would actually disagree with me on that.

    You need help for that problem.

  18. Visitor December 27, 2009 at 11:08 #

    David,

    OK, you didn’t spot the joke. You took what I said literally: that half the population is of below average intelligence.

    It’s the holiday season, and I’m bored, so I responded to your literal response, literally.

    And, literally, half the population is of below average intelligence. As I said. Although we could never identify who they are, since intelligence could (probably) never be scaled to the molecular level, it nevertheless remains a statistical certainty that this is so. Try to remember that mathematics is discovered. It’s not agreed on by academics, or dependent on any test-de-jour.

    BTW, we all did that mean-median-mode shit when we were about 14.

    As for your personal abuse, I made a passing joke, told me by a statistician of the highest intellect and repute. It was a comment on nobody. And it is you who was sitting at your computer waiting to put someone down.

    I suppose there’s an argument that I should have ignored you. But I suspect that our exchange adds value to the site. Certainly, you are edging into interesting neurodiverse territory with your penultimate paragraph.

  19. David N. Andrews M. Ed., C. P. S. E. December 27, 2009 at 14:01 #

    “Try to remember that mathematics is discovered.”

    I have a huge minor in mathematical sciences. Do you think I don’t know that?

    “It’s not agreed on by academics, or dependent on any test-de-jour.”

    Um… actually, many things in mathematics are defined! Pi has defined values (depending on how accurate one needs to be; e. g., in engineering craft skills circles, it is defined as ‘3’, whereas one might define it to about 6 decimal places for reasonably accurate calculation). So does the square root of two: for example, although the absolute value of the number is one apparently endless, non-repeating sequence of digits, we have to remember that – as with the same issue seen i the case of Pi – this extremely long number is not exactly going to make our lives easier when we have to use the relationship it is defined by. We have to truncate it. And we do this by defining our accuracies. In surveying an archaeological site, we have to lay down square grids of 10m x 10m, each one having 100 1m x 1m grid-lines in it. When we lay these down, we have to decide on the orientation and then we construct the grid. We do not use the numerically exact version of root two: we use a very truncated version, 1.414, because this is accurate enough for our needs. This is a defined version of a surd, and it is defined in its accuracy; and the test for the appropriateness of that accuracy is the situation we’re in. So, 3 d. p. is of ample sufficiency when we want accurate plotting of the location of finds in an archaeological reference grid during an excavation. Might not be so amply sufficient if we want to set up a grid over an area some orders of magnitude greater… we’d have to define a new degree of accuracy for such an enterprise, and that degree of accuracy would be determined by the number of orders of magnitude involved in the difference in areas. This is what I mean by ‘defined’… many things are like this.

    As for tests ‘de jour’ … you’re talking rubbish. Many aspects of statistical analysis have to be tested for reliability, as well as for some measure of how valid we can say are any inferences we make on the basis of the results of quantitative research (including the use of psychometric tests).

    Yes… before I became an educational psychologist, I taught mathematical sciences. Seems you understand very little about mathematics. Like you understand very little about developmental psychopathology.

    “BTW, we all did that mean-median-mode shit when we were about 14.”

    Bit behind, weren’t you? We did that when I was 11.

    Starting to feel sorry for you.

    “And it is you who was sitting at your computer waiting to put someone down.”

    Nope. I’m looking for more references for a set of lectures I’ll be delivering in the new year.

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Five-percent of nothing « Left Brain/Right Brain -- Topsy.com - December 25, 2009

    […] This post was mentioned on Twitter by Kev and Kim Wombles, topsy_top20k. topsy_top20k said: RT @kevleitch Autism Blog – Five-percent of nothing « Left Brain/Right Brain http://bit.ly/6sEGFX […]

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