Recently, Lenny Schafer made a post to the Evidence of Harm (EoH) maillist in which he helpfully prepared a FAQ on the NeuroDiversity movement. Unfortunately, he made several errors as one would expect from someone uninterested in accuracy and more interested in scoring points. I’ll seek to address them here. Please bear in mind that these are _my_ views of Neurodiversity. I’m not a spokesman, these are _my_ opinions having been ‘part’ of the Neurodiversity movement ever since my daughters needs and Mr Shafers bigotry drove me to become vocal.
How is “neuro” in NeuroDiversity (ND) defined medically?
It is not clinically, measurably defined. It would appear to self- apply to people who display neurologically based behavior that deviates from the norm (the NeuroTypical), but mostly applies to those who are high functioning. It mostly does not include those whose behavior is disabling as the result of treatable or curable medical disorder or disease.
1) It does not mostly apply to the ‘high functioning’ except insofar as that group so far make up the majority of ‘members’. Members of the Neurodiversity movement consider everyone, regardless of level of functionality to be diverse and to be valued as such.
2) It most certainly does include those ‘whose behaviour is disabling’. The belittling and lessening of the impact of those autistics who are not classed as ‘low functioning’ by Mr Schafer is both well documented and incorrect from a moral and medical perspective.
How does autism fit in?
ND campaigners promote a revised definition of autism that includes most high-functioning neuro-diverse behavior, regardless of actual diagnosis. However, its embrace excludes extreme disabling behaviors that are a result of medical pathology or developmental disorders. This ironically would exclude clinical autism, while including most of the rest of the autism spectrum, and any other-than-neurotypical high function behavior. This autism is a natural part of the normal
neurological landscape, is their argument. To treat or attempt to remedy that which is only different, but not pathological, is seen as a demeaning, if not a bigoted diminishing of the intended victim’s humanity. We can for the moment call this “autism-oranges”, to distinguish it from clinical autism, which we’ll call “autism-apples”.
But clinical autism, autism-apples, is not disabling as a result of social oppression and intolerance, although such attitudes certainly can add to it. Here autism is defined and measured by functional disability. Seeking remedy to the disabilities of autism is no more immoral than the desire to have the blind’s vision returned.
Autism-oranges excludes functional disability. Behavioral “differences” do not require remedial treatment and cures, only
acceptance and assistance.
Autism-apples is clinically defined by disability (DSM-IV). Treatment that leads to the restoration of ability is a rational and moral goal. Such treatment may also include social acceptance and assistance.
The NDs do not always acknowledge that their definition of autism has components opposite to the clinical definition. This definition shell game is employed to convert parents who express a humane desire to alleviate their children’s disability, autism-apples, into heartless, selfish intolerant monsters whose bigotry keeps them from accepting their children for who they are: autistic-oranges.
1) ‘ND’ proponents do not ‘promote a revised definition of autism’. In fact they promote the factual definition of autism as defined by various diagnostic criteria. Schafer – as ever – tries to make two things out of what is one – autism is autism.
2) Its embrace does not exclude anyone whos neurology differs from ‘the norm’. Including what Schafer refers to as ‘clinical autism’ by which he probably means ‘classical’ or Kanners autism.
3) What Schafer refers to as medical pathologies are probably what the medical world calls ‘comorbidities’ – these being the non-standard behaviours/conditions that sometimes occur to autistics such as lack of speech or ADHD or gastric problems. These things do not indicate a separate type of autism as they form no part of any diagnostic criteria. This is because they cannot be used to define or diagnose autism because they do not occur to all autistics unlike the differences covered by the triad of differences. Proponents of neurodiversity both accept and promote humane and non-dangerous methods of treatment to aid autistics in their struggle with their sometime very debilitating comorbidities. Out of the two communities (neurodiversity and the Schafer represented community) neither group states that treating comorbidities is unacceptable and only one seeks to repeat that error as fact.
4) Proponents of Neurodiversity have never, to my knowledge, labeled anyone as heartless for trying to alleviate the disabling comorbidities that their children may have. As a parent myself whos classically autistic daughter undergoes PECS and speech therapy I’ve never been castigated as ‘selfish’ or ‘a selfish intolerant monster’. On the other hand, I have been told by some parents who support Mr Schafer’s position, some of who are members of the EoH list, some of whom are Rescue Angels and some of whom identify with the goals of these groups that I and parents like me are child abusers, that may daughter is ‘a retard’ who should be ‘put down’, that I am scum, that I am an idiot, that I am stupid, that I have a psychological disorder, that I am evil, that I will go to hell, that I am a cunt, that I can ‘go fuck myself’, that I should ‘sit next to the nearest Arab with a rucksack’ (which I assume is a racist based wish that I become victim to a suicide bomber), that I am in the pay of ‘Big Pharma’, that I part of a loose association of lawyers protecting the interests of Pharma companies’…I could go on. I get lots of hate mail. Most of it comes from people with incredibly similar writing styles to those who populate the EoH maillist. My blog has been signed up to porn spam, corporate spam, software spam and at least three people have attempted to perform DOS (denial of service) attacks on my site.
What is the ND Agenda?
The group vitriol against parents is so pronounced, I find it difficult to believe that it is the welfare of my child that is at the
core of their agenda. Altruism has no such rage. I suspect we are but stand-in proxies for their own parents who they may hold responsible for bringing them into such an unfriendly world for autistic-oranges. The agenda seems more about revenge, than reform.
1) Even if that were true (which I can assure you it is not) how does one explain the many *parents* who believe in and follow the Neurodiversity credo? I can think of at least 10 parents who post comments to this blog who do not wish to treat their kids with dangerous treatments and who wish the world to change for the better of their kids rather than meekly accepting the worlds intolerance for the sort of people our kids are.
Overall Mr Schafer, your FAQ was not a FAQ but a ‘FAQ on a mission’. You again promote your singular and totally unsubstantiated and error strewn definition of autism and then expect everything else to fall from that.
Recently, people with more tolerance and wisdom than you have attempted to find ways to reconcile neurodiversity and biomed proponents. These people seem to have no axe to grind, no diagnostic criteria to mangle and no politics to push. I would strongly suggest you step back and allow them to have their time. Your group is evolving into places you cannot seem to go.
Left Brain Right Brain 
I’m only speaking for myself here.
If there’s treatment protocol that betters the lives of children or adults with autism, it should be used. Schafer basically posits that the neurodiversity proponents don’t want autistic children to have such treatments, which I think is fundamentally false.
I think the frustrations of the neurodiversity supporters fall more along the lines of the portrayal of autism as “hellish” or a “death sentence” that needs some kind of immediate, risky intervention in order to cure. It’s why folks like Michelle Dawson bristle at any implication that autism=cancer, for example, because it make autism seem like something that has to be fixed or cured immediately. When in reality, being autistic is something that you ARE, and as Kevin mentioned, the associated conditions (ADHD, speech problems, gastrointestinal disorders) are simply comorbidities that should be treated.
The reality is that comments like Schafer’s, and the recent AutAdvo vs. biomedical supporter pissing match really obscures the issue:
Biomedical treatments for autism have no proven track record of success, and lack a the scientific base by which one can make an educated risk/benefit analysis. That’s the real objection.
But as long as Schafer, et al., can set up straw men and knock them down, they won’t have to answer that question.
Hmmm…
Apparently, Mr Schafer is a BA in psychology. So am I, essentially…. except I’m more. Because I have postgraduate training. As a specialist in autism issues.
I am qualified to make educational and developmental diagnoses, including autism. I take issue with Schafer: “Autism-apples is clinically defined by disability (DSM-IV)” Um…. well, clinical autism is autism as a whole spectrum of intensities of difficulty in many areas, which congregate into three main areas of function (Wing & Gould’s Triad). There is no other set of criteria which differentiate any sort of autism “oranges” or “apples” under the whole definition of autism in either DSM IV TR or in ICD 10. Even Gillberg’s Asperger syndrome criteria cannot separate the different types of autism that happen, such as autism is a real entity.
Mr Schafer is not doing his alma mater any favours by being so obviously ignorant of fact as he is; and his current silliness is an object lesson as to why a first degree or equivalent in psychology is merely a starting point, as opposed to a finishing point, in the training process for psychologists (clinical or otherwise). Mr Schafer would make a poor practitioner psychologist by the look of things: his inability to understand what is clearly meant in the diagnostic manuals is obvious here, and his inability to understand the nature of ability, the nature of extremes of developmental difference, and his lack of understanding that the autistic people against whom he routinely levels his attacks have usually gone through a hell of a lot of abuse from practitioners and lay-people alike before they have finally been given a correct and accurate diagnosis suggests a lack of empathy not even clinically evident in autistic people.
Mr Schafer may be a psychology graduate, but he is definitely no psychologist. On that basis alone he is displaying nothing but foolishness in attempting to mess up diagnostic criteria in order to suit his own mean and idiotic ideas and ends.
If I knew the university from which he gained his degree, I would love to write to them informing them of his behaviour and suggesting that his degree be rescinded on the basis of unseemly behaviour in a graduate of the university in question.
Of course, Mr Schafer is in fact a nobody trying to give the impression of being a somebody – and failing. One day he will realise this, but it will be too late. The people he has deliberately set out to offend will not forgive: why should we?
Meantime, I have the job of assisting both lay-adults and physicians in diagnosing autism and other label-able difficulties when they appear.
I don’t see Mr Schafer being asked to help out like that!
Excellent responses Kevin to an obvious maroon. I guess I shouldn’t insult someone I don’t know, but if they are going to say such stupid things… (Better to keep your mouth shut and look like a fool than speak and prove it.) If nothing else, his rant provides the opportunity to really explain the ND point of view. Though I’ve been reading quite a bit on the ND vs. BioMed debate, one statement you made I think really addresses the heart of the BioMed argument against ND:
“Proponents of neurodiversity both accept and promote humane and non-dangerous methods of treatment to aid autistics in their struggle with their sometime very debilitating comorbidities.”
An interesting delineation of autism and its comorbities, which most people (me too, maybe) most often think of as part of the autism itself. I’ll have to think on that some more.
Quick question for you: When you talk about the “BioMed” community, are you referring primarily to those that believe in what you call “dangerous methods of treatment?”
You know, I’ve looked through the DSM-IV a couple of times and I’ve yet to find any language stating or implying that any particular level of “disability” is required to make the diagnosis of autism.
Of course, people who have difficulties with communication, social relations and repetitive and/or stereotyped behaviors may be considered disabled, but then so is at least half of my university’s engineering department. It is all part of a “spectrum” (I believe that is the appropriate “buzz-word”), with people who are profoundly disabled on one end and people who are “neurotypical” on the other.
You’ll notice that I didn’t put people who are “almost neurotypical” as the “other end” of the spectrum – this is not an oversight. Everybody has some degree of these traits. Nobody is perfectly fluent, unfailingly socially appropriate and completely free of obsessions and stereotyped behaviors.
In fact, I bet we could start a regular football brawl by trying to come up with a rigid definition of “perfectly fluent” (have you ever tried to understand someone from the Bronx), “socially appropriate” and “obsessions”.
In fact, I have long suspected that Lenny was “on the spectrum” himself, since he seems to have difficulty with a “theory of mind” – imagining how his words affect other people.
Prometheus
What bugs Autism Diva is the appearance that Schafer made up the label “ND”. It’s certainly not in common use by the folks on aut advo. It might be used elsewhere, but it’s interesting that it should come from Lenny’s writings first before say Amanda Baggs of austitics.org.
neurodiversity is one word, not two. The acronym would be “N”, not “ND”.
Usually Schafer tries to describe the people who talk back to him on the subject of autism as frauds, but here he’s trying to give the appearance of some level of understanding. It’s quite phony. Going to Lenny Schafer for a definition of autism is like going to David Duke (a known white supremacist) for a definition of “African American” or “Latina”.
Lenny was asked in an email: “Is Temple Grandin autistic” (see templegrandin.com) , because by Schafer autism criteria she is not, and neither is Bernie Rimland’s son, Mark.
Lenny never responded to that simple question.
Temple Grandin is 100% autistic, she’s also has a PhD and is a professor. Autism Diva had the priviledge of meeting Dr. Grandin. Nice lady, Dr. Grandin.
She doesn’t meet Schafer autism criteria though and Schafer knows better than to say Dr. Grandin isn’t autistic.
So he just ignored the question.
Jerry Newport has met Lenny and thinks that Lenny is a self-hating autistic.
I’m one of those people who is “almost neurotypical”. I’m far better able to “fit in” now than I was when I was a child, but I’m still very much an eccentric and something of a loner, and I’m not very sociable (I can be sociable, but I find it pretty exhausting).
My husband is an eccentric in other ways. One of his brothers is extremely odd (and obsessed with trains). A cousin is a diagnosed Aspie. My mother has some qualities that make me seriously wonder about her placement on the spectrum.
As a kid and adolescent, I was severely pressured to “fit in” and to “conform” and I just could NOT do it… I don’t think the same as “normals”. I don’t experience things the same way “normals” do. I am not disabled, I am not autistic, but I sure as heck am not “normal”.
In my mind, neurodiversity is about accepting that some people are just “wired” differently, some very mildly (we’re just “eccentric”), some severely (such as the profoundly autistic). I’ve always felt this way, actually, since long before I had an autistic child and since long before I knew there was such a thing as a “neurodiversity movement”. It only makes sense to me, who is “almost normal” but not quite normal enough to be actually normal.
You know, I’ve heard a lot of things out of these people, but I think that this…
I suspect we are but stand-in proxies for their own parents who they may hold responsible for bringing them into such an unfriendly world for autistic-oranges. The agenda seems more about revenge, than reform.
Is actually one of the most offensive things I’ve heard recently. But, then again, it does push my buttons (I’m VERY protective of my father, at least. My mother is the kind of person who doesn’t need anyone else to protect her. Do I sometimes have problems with them? Sure. We’re all humans, humans have problems with each other, sometimes. But I wouldn’t trade them for any others.) He’s basically decided that this entire group of people has pent-up anger at our parents (because…they didn’t love us enough to chelate us and get rid of that horrid, horrid autism?) and that we’re, thus, merely saying all of this out of ‘mommy issues’.
Brilliant. Can’t imagine why I didn’t think of that one myself, you know.
At the same time that I agree with most of what you are saying, I think trying to separate autism cleanly off into “what fits DSM criteria” and “what are comorbidities,” at least the way you do it, is potentially inaccurate (and therefore potentially dangerous).
As far as I can tell, the reason I meet DSM criteria for “autistic disorder” is because of the different way in which I process and respond to information. If I could process and respond to information in the manner that an NT does, I would be an NT. I don’t mean that every autistic person processes and responds to information the same way that I do. But for me, things that you would probably write off as “co-morbidities” are an essential part of why I am clinically diagnosable as autistic.
If you think these things are “comorbidities,” then all I have are “comorbidities,” not some essential (but not well-described) “autism” that makes me do things the way the criteria are laid out. But as far as I know, I do have a brain layout that is autism far more than the criteria are (it just happens to cause me to meet the criteria). And that brain layout leads to different ways of going from perception to thought. Different ways of going from thought to thought. And different ways of going from thought to action.
Those different ways of brain performance cause — in me — what the criteria merely call “social deficits,” “deficits in communication,” and “repetitive and stereotyped behavior”. On the way to causing that, they cause differences in perception and reaction. Including difficulty with understanding and using the spoken word. (Why you think this is not covered in the criteria is beyond me.) Including what some people call “sensory issues”. Including what some people call “movement problems”. All of these things contribute to why I meet the criteria in the first place.
If Schafer and his ilk are in danger of restricting the definition of autism in order to keep people like me out, some in the neurodiversity community are also all too eager to keep the definition of autism too narrow to allow for any of the so-called negative stuff to actually be a part of autism, preferring to separate it off as if it’s even possible to do that. To say that something is not a part of autism because some DSM-writer didn’t include it, or because you didn’t happen to see it in the DSM criteria (even if it’s there), or because autistic people can lack it and still be autistic (doesn’t mean it’s not still a central part of autism for some)… seems just as foolish as what Schafer is doing.
I remember well sitting in a chatroom with two other autistic people and an NT who supported neurodiversity (before it was such a common term). The autistic people were all discussing our difficulties with using spoken language — for us, not a co-morbidity, but part of autism, regardless of what it is for other people. The NT got more and more peevish and finally snapped that “speech problems have nothing to do with autism.” The rest of us found her irritating and out of touch with reality at that particular moment, especially since she had a habit of snapping that at any autistic person who brought those up. It was like she couldn’t fit a positive concept of autism in with autism sometimes including things she (but not necessarily we) viewed as negative.
So for me (and not necessarily for other autistic people)…
…knowing what objects look/sound/feel like before they are perceived the way most people would perceive them is a part of autism, not a co-morbidity. This leads to what some people call sensory issues, it leads to an appreciation for certain kinds of pattern and beauty that is invisible to most people, it leads to the criterion of “preoccupation with parts of objects” (and for that matter several other of the criteria), it leads to difficulty in comprehending things some ways, ease in comprehending things other ways, it’s not possible to separate it off into good and bad parts or the autistic and co-morbid parts.
…for me, my particular thinking style is a part of autism, not a co-morbidity. It leads to certain kinds of insight, it leads to oversights, it leads to difficulty with language, it leads to all kinds of things, some of which are part of the criteria and some are not. It’s not possible to separate it off into good and bad parts or the autistic and co-morbid parts.
And on, and on, and on, with various things you might well consider co-morbid. As for myself, I’m beginning to loathe that word, because it seems to mean “A way of dismissing any part of autism that someone doesn’t want to deal with.” Not that certain things are a part of autism that are sometimes claimed to be, but I think a lot of autism-positive people forget that certain things are part of autism for some people even if it’s not convenient for them to acknowledge this.
At any rate, there are several indivisible aspects of the way my brain works, that you would probably divide into autism and non-autism, and I would (knowing how they all connect together) call this division impossible.
Point(s) taken Amanda.
My own understanding on the issue was that anything that couldn’t be applied universally to all people who were autistic could not be used as a diagnostic tool and thus could not be said to ‘be’ autism. Thats not to say that it couldn’t be _part_ of autism however.
For example – you said above you couldn’t see how I excluded speech issues. I wasn’t necessarily excluding them, it was more an attempt to segregate developmental issues relating to _speech_ and issues relating to _communication_ in a general sense ergo, as per my understanding, if person X goes to their consultant with *just* an inability to speak, they wouldn’t necessarily be able to get a diagnosis of autism (they may well have other non-autistic related issues related to speech and/or hearing) but if person X goes with an inability to _communicate_ then the consultant in question would look more favourably on a diagnosis of autism.
_And on, and on, and on, with various things you might well consider co-morbid. As for myself, I’m beginning to loathe that word, because it seems to mean “A way of dismissing any part of autism that someone doesn’t want to deal with.†Not that certain things are a part of autism that are sometimes claimed to be, but I think a lot of autism-positive people forget that certain things are part of autism for some people even if it’s not convenient for them to acknowledge this._
Ouch, but yes, I’ll own up to that if thats what I’ve done. I’d appreciate more info on this if you have it Amanda, I don’t want to misrepresent anyone.
No need for the ouch <grin>.
But the diagnosis requires several things taken together. Repetitive movements do not occur in all autistic people, but they can be used as part of the diagnosis. There is no single thing that can diagnose autism since autism is a collection of traits (or in my view, a word for people who have a collection of traits).
So on those grounds all autistic traits could be said to be “co-morbid” because not a single one of them is actually essential to diagnosis, you have to have a combination of several.
About speech, they say that it’s “communication” and not “speech” that is affected, but from actual observation of professionals and of diagnosed people, I’d say that they see a lack of speech (or a different kind of speech), a lack of certain kinds of gesture (but not necessarily of others they are not picking up on), an apparent (sometimes real, sometimes not) difficulty with receptive communication, and declare that a lack of communication.
What goes into that can vary from person to person, of course. But then so can the rest of these things. When professionals talk about “communication” in autism, they’re talking about specific kinds of speech and specific kinds of gesture. They’re not really talking about all communication because a lot of the way I’ve seen autistic people communicate, is invisible to the majority of professionals who are the ones doing the diagnosing.
What goes into that can vary from person to person, of course. But then so can the rest of these things. When professionals talk about “communication†in autism, they’re talking about specific kinds of speech and specific kinds of gesture. They’re not really talking about all communication because a lot of the way I’ve seen autistic people communicate, is invisible to the majority of professionals who are the ones doing the diagnosing.
Good point.
OK, I’ll bear that in mind, thanks for the clarification. I’ll go do a bit more reading ;o)