On being considered retarded

1 Nov

Since my daughter was diagnosed, a vast range of people have aided my comprehension about some aspects of autism from a first hand perspective and have enabled me to try and apply the wider lessons from their experiences into how I interact with my daughter as an autistic person.

To me this has been the most invaluable benefit of the Internet and one that simply wouldn’t have been possible without this particular technology. Recently, technology has moved beyond words and into moving video. This has enabled some of the people I hold deep liking and respect for to let us more fully hear their opinions and thoughts.

This is vital. I fully subscribe to the idea of ‘nothing about us, without us’ which means that any organisation that purports to speak for autistic people should _fully include_ autistic people. Until now, such organisations have been able to cling to the lie that autistic people cannot hold opinions or speak for themselves. This perception is now being actively challenged.

When I first started Autism Hub, there were a number of people who topped my ‘most wanted’ list. The people I really wanted to be members. This list included Autism Diva, Joel Smith, Jim Sinclair (still not managed that one!) and Ballastexistenz aka Amanda Baggs. Autistic people who are also great teachers.

Amanda has been of particular help to me and has (is) helping me see autistic rights in the wider context of disability rights, helping me move beyond a solely medical view of autism and above all else helping me see ways I can help my daughter. Maybe not right now, but as she ages. She’s not doing this by strategies or by being a walking, talking exhibit but simply by allowing me (all of us) to read her blog and now to view the video’s she’s made and will, I hope, continue to make.

The latest one is my favourite so far. In it, Amanda talks about being considered retarded and how first impressions only really alter depending on the person doing the ‘percieving’. Amanda starts the video by saying:

People often ask me what it’s like being considered retarded, or being ‘trapped in a body that looks retarded’

This implies that retardation (what UK people call ‘learning difficulty’) is an inherently negative state and that one should not want to ‘look retarded’ or at least should be ashamed of having an appearance that resembles that of someone who is considered to _be_ retarded. One of the commenters to the video Amanda made was that ‘you don’t look retarded you look perfectly fine’. That entirely misses the point I think Amanda was trying to make; that it’s a fact that looking retarded _is_ perfectly fine. There should be no shame or inference of shame in ‘looking retarded’. To infer otherwise is deeply insulting to a wide range of people who carry that diagnostic label and should not be trotted out as a back-handed compliment.

Amanda is self-honest in an age when self-honesty is almost totally absent. Where celebs trot out fashionable ailments like binge drinking and check in for extended stays in celeb-clubs like The Priory Clinic, Amanda states quite happily that yes, she looks retarded and yes, in some areas she _is_ retarded. She’s quite happy with that and why not?

Amanda has mentioned in the past the bizarre change in attitude to her that people undergo once they know she can type. When they first see her, they think ‘retard’ with all the negative connotations that _society has saddled that word with_ and never consider that maybe ‘retard’ isn’t something to be used with disgust, or with pity. Amusingly, once they learn she can type she suddenly stops meeting that criteria in their eyes. Instant normality! Just add keyboard!!

Amanda stims, she flaps her hands, she uses a talking keyboard to communicate. But she doesn’t only become normal after the third item in the previous sentence. She’s always normal. And autistic. And if we’re talking about the speed she can process some information sometimes, she’s also retarded. Retarded is another word for ‘slow’.

We have to be careful though to clearly explain. Society has attempted to load the word ‘retard’ as an insult. It is not OK to use ‘retard’ as an insult. It should be OK to be considered retarded if one truly is however. Amanda’s strength here is de-clawing the loaded connotations of the word ‘retarded’.

And speaking of de-clawing, look for starring role of Amanda’s cat ;o) . Here’s the video:

23 Responses to “On being considered retarded”

  1. Ballastexistenz November 1, 2006 at 15:50 #

    Also, by the way, I believe people should be called what they want to be called. People of people with intellectual disabilities don’t want that word used on them, and I’ll generally use whatever word they want, and I think outsiders should be careful with things like that. My own personal standpoint is more like, “If you’re going to call me that — I know you mean it as more a sociological category than a medical one — then I’m at the very least going to reclaim it to defuse the kind of negative power you give it, instead of running as far away as I can from it and therefore implying there really is a class of person who deserves to be thought of the way you think of us.” (And I know some people who have been officially designated as retarded who take exactly that tactic, and some who absolutely won’t use the word.)

  2. LB November 1, 2006 at 17:30 #

    My daughter has microcephaly and received a label of mild MR when she was little. Personally I am ambivilous towards the word when it is used as a medical term and quite frankly it is not much of an insult in my opinion because of what it represents. Just like freak or mental patient because I have heard those ones myself. However – I did not make a point to tell my daughter as a child that she had this label because of all the negative connotations from society and although she has a LD and CAPD I consider the previous label irrelevant.

    I must say though that I DO get concerned when I see some on the spectrum – both individuals and parents who seem to want to make a deliberate effort to explain that autism has nothing to do with mental illness or retardation. In a sense that is true but there are plenty of individuals with co-concurring conditions. That always seems to me to try and make autism “look better”. I don’t see that as being neurodiverse. And I am not saying those who point out the myths about autism, but those who play the “at least it is not MI or MR” game.

  3. notmercury November 1, 2006 at 17:54 #

    I was on a beach on a Caribbean Island many years ago and, as many of us know, sometimes you end up going where your autistic child wants to wander even though you’d much rather be sitting in the surf sipping frozen tropical drinks (beer in my case).

    For some reason we ended up having lunch far down the beach on a picnic table that was already occupied by a few of the locals.

    My first reaction was to see them as a bunch of Rastafarians with dreads, probably sitting around smoking ganja, and all of the stereotypes that come to mind.

    After a few minutes we struck up a conversation and even though they were difficult to understand at times, I was shocked to discover that one of them had a much better knowledge of world politics than I did. He also shared some insights that I never would have considered.

    We went on to talk about kids, autism, life and so much more. I was disappointed when I had to leave to play daddy lifeguard.

    I think most people would have written these guys off based on their appearances but it turned out to be one of the most memorable conversations I’ve had in years.

    I’d much rather learn from someone with first hand experience than a group of self proclaimed parent-experts who think they have all the answers.

  4. Joseph November 1, 2006 at 18:15 #

    ‘Retard’ as an insult is common (heck, autistics have used that as an insult) but in this community I think it’s most often used by curebies, which is not surprising. I’ve noticed many curebies are obsessed with evaluating the intelligence of others and their own, and they have been known to attribute disagreement to cognitive impairment.

  5. kristina November 2, 2006 at 02:11 #

    A sort of version of the “looks like a retard” line is when people say of Charlie “he looks so smart!” as if to imply (perhaps) that he only looks smart, but is not….

  6. Sophist November 2, 2006 at 06:27 #

    The biggest problems with “MR” is that it’s so poorly defined and measured (i.e., it isn’t specific and all it means is that the person’s testable IQ level is behind the national average range at their age range).

    But all that really refers to is the performance ability of a given individual on the tests, tests which have been developed to measure general intelligence. And they’re wholly inadequate for nonaverage people. It is an insufficient measuring tool.

    I don’t have a great problem with “MR” per se (I suppose this is in part because the label has never been a part of my life personally). But I do have a problem with its accuracy and specificity. And in this regard, it falls flat and is therefore potentially meaningless when used in reference to the autistic population and other atypical populations as well.

    It is a useless tool and, until they develop something better and relevant, it should be discarded.

  7. caroline November 2, 2006 at 08:25 #

    dear notmercury,
    I think you illustrate clearly just how autistic you are when you say that you don’t want “self proclaimed parent-experts” to tell people about what their kids with autism feel and that it is better for the person with autism to explain themselves.

    Well of coarse it is better for information about a person with autism to come straight from the “horses mouth” so to speak. However, what arrogance you have to assume that what you experience as a person with autism, (and a high functioning person at that otherwise you would not be able to lodge your blogg or read anyone elses’blog), is the same as what my son feels or experiences. Unfortunately, he cannot even tell me and I love him more than my own life and have lived with him for years.

    One day I believe they will medically/genetically catergorize people with autism and maybe they will find a group who are proud to have autism but maybe, like my son they will identify a group for whom living is so unbearable that they would rather tear at their skin, bash themselves until they bleed than not hurt themselves. I want my son to reach his full potential BUT at minimum, I want only 2 things for him. Firstly to find something that brings him pleasure and happiness in life, even if it is eating sticks or sucking on the kitchen cupboard AND secondly to be safe from abuse and neglect.

    If you do not have autism, then I sincerely apologise for making that presumption, but either way, you have no empathy for those kids and their families who have autism and who, because they cannot communicate, rely on the people who love them to try and decifer what their needs are or when they are suffering. I may never know if I am doing a crap job of it or a good one but I do know my intensions are in his best interests and retarded or not, I would rather my son twirl a fork in his hands at a lovely beach or at the home of good friends or at our local supermarket than locked away in some institution. Then I will worry about whether Retarded has negative connotations. (and I think it does). That is why I think all kids will all disabiities should be included in mainstream schools and accommodation. It has been done in some states in the US for 25 years. I think that people will only stop being scared of retarded people if they get to live, play, shop, eat and cry with them. Sincerely C.

  8. Kev November 2, 2006 at 10:33 #

    _”However, what arrogance you have to assume that what you experience as a person with autism, (and a high functioning person at that otherwise you would not be able to lodge your blogg or read anyone elses’blog),”_

    Caroline, there is as much arrogance and ignorance in that assumption as the one you think NM is making. Did you watch the video I embedded in this post?

    My daughter is low functioning (if we have to use such categories) and is a regular visitor to YouTube and audio blogs. She loves them.

    I’m not denying the reality of the situation you face but I think it is dangerous to put an interpretation on any child that finds living ‘unbearable’. I doubt that description very much. There are challenges for sure – no one claims otherwise – but to describe life as unbearable is verging onto very dangerous ground.

  9. David N. Andrews MEd (Dec 2006) November 2, 2006 at 11:25 #

    Sophist: “But all that really refers to is the performance ability of a given individual on the tests, tests which have been developed to measure general intelligence. And they’re wholly inadequate for nonaverage people. It is an insufficient measuring tool.”

    Actually, some intellectual ability tests do have a value in extreme-enders (re: the bell curve), although many are developed for the higher-IQ extreme-enders… the Advanced Raven Progressive Matrices is one example, and the AH5 is another, and these are tests of general intellectual ability in the non-verbal domain.

    One of the issues involved in assessment of intelligence is that, when a battery-type test is used, there is likely to be a spread of scores which are suggestive of the examinee’s level of ability (taking into account many non-intellective factors as well as anything we might call a ‘natural’ ability). When these performances are compared to a norming group (which is by no means guranteed to be a comparison to any sort of ‘national average’), we can get an idea of how likely it is that the examinee will be able to do related tasks in real-world situations (specifically, in the case of IQ tests like the Wechslers, in regard to educational settings).

    The problem is not the tool. It’s how it is used. Let’s say that a psychologist (P) assesses an examinee (E). E scores quite highly on average across the two WAIS domains (Verbal and Performance), but P notices ‘dip’ scores in one or two subtests on, let’s say, the verbal domain. These ‘dip’ scores are not outside the lower limit of normal range (as defined by a z-score of -1; z-scores are the basis for most if not all standardised ability scales these days, and they relate to the number of defined standard deviations a scaled score is from the defined mean). In the case of a person scoring mostly at the high-average level, this one ‘dip’ score is not likely to be significantly lower (in a clinical sense, although there may be a statistical significance attached to the difference). In the case, however, of someone whose pro-rated domain-specific IQ derived from the other three or four scores is, let’s say, 2 standard deviations from the mean (on a Wechsler, this would be 130)… a ‘dip’ score showing up as being around z=-1 would artificially reduce the overall IQ estimate (in as much as this estimate equates to the examinee’s general ability), and a good psychologist would be aware of this. In this case, such a low score would require the psychologist to further assess the examinee with other tests related to the task(s) performed in the subtest(s) in which the examinee obtained the ‘dip’ score. Some of the tests used may well need to be qualitative.

    The charge that tests of intellectual ability are insufficient measuring tool is incorrect: the test is measuring what it was designed to measure – various performance levels in non-verbal and verbal tasks related to educational performance. The issue isn’t the test; rather, it is what the test is used for.

    In fact, the charge that the tests are wholly inadequate for ‘non-average’ people is also incorrect on a couple of grounds. Firstly, the test defines the criteria (at least quantitatively) for ‘average’ and ‘non-average’ in terms of intellectual ability. Secondly, statistically speaking, the chances of meeting a psychometrically ‘average’ person are very low. Take the WASI, one of the tests I use: it has four subtests with related scales, two clinical scales and one combined scale. The psychometrically ‘average’ person (in order to be such) would necessarily have to obtain scores between 40 and 60 on the subtests (these are T-scores), and between 85 and 115 on the clinical and the combined scales (these being standard index scores). Given that the definition is inclusive of all scales, and that the chance of finding a score between these limits (all representing scores lying between z=-1 and z=+1 on a ‘normal’ distribution) is 0.68, the chance of finding a psychometrically ‘average’ person is just under 7% (that is, about 1 in 15) using only 7 scales.

    Using the WAIS, the number of scales is 5+5+2+1=13, so the chance of finding a psychometrically ‘average’ person on such a test is 0.6%, or 1 in about 150. The test itself defines ‘non-average’, with regard to intellectual ability. Beause of that, the charge that these tests are wholly inadequate for non-average people is not sensible (logically speaking).

    If you mean, however, that they don’t allow a useful measure of what the non-average person is likely to be able to do in an educational setting… that may well be a different matter, again depending on the test.

    Like I say, it isn’t the test that is faulty or insufficient; it’s the work done by the psychologist in interpreting the results of the test. It is always worth remembering that a test result, regardless of what it is, tells you nothing about the testee if there is nothing to link the result to what the person can do in real-life settings.

  10. David N. Andrews MEd (Dec 2006) November 2, 2006 at 11:30 #

    Kevin: “I’m not denying the reality of the situation you face but I think it is dangerous to put an interpretation on any child that finds living ‘unbearable’.”

    I agree, on the basis that – if the child does find living unbearable (as I did) – it is always imperative to find out, as thoroughly as possible, why this is so. To say that ‘it’s because of the autism’ is not enough, since – even though I am autistic – it was never the autism that I suffered from: it was other people’s misconceptions of me as a person and the effects of such misconceptions on the development of my own self-concept that I suffered from. The people dealing with my case, when I was a child, completely messed up and I still suffer as a result of that.

  11. Ballastexistenz November 2, 2006 at 14:36 #

    Caroline:

    Kinds of autism may be governed by genetics, but feelings about autism are not. If that were so, you would find that all people with the same conditions that have a known identified gene already, feel the same about themselves, and that is not the case. It would also make it impossible for a person’s opinion about autism to change over time, because it would be genetically determined — and that is obviously not the case either, because there are autistic people who used to want to become non-autistic and no longer do, and autistic people who used to not want to become non-autistic and now do.

  12. David N. Andrews MEd (Dec 2006) November 2, 2006 at 14:36 #

    Um…

    “#Caroline’s smart friend : 22 minutes ago
    Anyone reading this has caught a bit of teh autisms.
    I mean, anyone I disagree with is autisitc. Yeah. And not in a good way.
    You, notmercury. I diagnose you.
    I like pepperoni pizza.”

    That’s the *smart* friend?

    I’d hate to see the ones who are not so smart! :/

    That made absolutely no sense whatsoever…

  13. notmercury November 2, 2006 at 14:41 #

    I think you illustrate clearly just how autistic you are when you say that you don’t want “self proclaimed parent-experts” to tell people about what their kids with autism feel and that it is better for the person with autism to explain themselves.

    How on earth did you ever get that from what I wrote?

    First, I don’t know that I’m autistic nor have I ever claimed to be. I really don’t care if I am or not.

    I am a parent of autistic children and I may or may not have heard the words “I love you” but the sentiment is communicated in more ways than I can count.

    If you do not have autism, then I sincerely apologise for making that presumption, but either way, you have no empathy for those kids and their families who have autism and who, because they cannot communicate, rely on the people who love them to try and decifer what their needs are or when they are suffering.

    No need to apologize for saying I am autistic but I will accept apologies for your many other presumptions.

    Call me pathetic but don’t call me unempathetic. Either way, you don’t know me well enough to say.

    As you read what others write, maybe read the words a second or third time and ask yourself if you understand what the person meant.

    Only then will you see, we’re all autistic like me.

  14. Bouquets November 2, 2006 at 15:29 #

    I have one met an autistic person and I have to say that this meeting changed my perception on them. They are neither stupid, nor retarded, but, that’s my feeling, they have an overwhelming sensibility that they cannot share with the others. For me it’s not a disease, but another way of existence. What they need is love, affection, hugs and smiles.

  15. Joseph November 2, 2006 at 16:49 #

    Obviously Caroline is the one making presumptions here. NM has not stated that he’s autistic, and he’s actually the parent of not one, but two, autistic kids. She also means “autistic” as a sort of insult at the beginning there. Do you see that? This seems like an unfortunate thread to do just that.

  16. Jeanette November 3, 2006 at 19:51 #

    The extremists on the AW Forum Message Board are definitely in the “mob” mentality. They use each other to bully autistic people.
    Instead of listening to Amanda and others on the forum with an open mind and an open heart, they ridicule her and belittle her.
    I hope when the time comes, and they realize they still have an autistic child, they don’t look upon their own children with such hate.

  17. David N. Andrews MEd (Dec 2006) November 4, 2006 at 12:03 #

    Jeanette: “I hope when the time comes, and they realize they still have an autistic child, they don’t look upon their own children with such hate.”

    Sadly, I think that they will.

  18. Purple_Kangaroo November 5, 2006 at 07:53 #

    She is very well-spoken and convincing. I’m glad I got to watch this video.

  19. Becca November 5, 2006 at 18:22 #

    I watched a little bit of the video and it’s very interesting and so far I agree with everything Balla says. But, I am finding it hard to access and sit and watch a long video.

    Ballastexistenz or someone else, if it is not too much work could someone please post a transcript of the words in the video sometime?

    Cheers

    Becca

  20. David N. Andrews MEd (Dec 2006) November 5, 2006 at 21:58 #

    Becca,

    “Ballastexistenz or someone else, if it is not too much work could someone please post a transcript of the words in the video sometime?”

    I think there is one. I’ll check it out.

  21. Sophist November 6, 2006 at 19:45 #

    David N. Andrews, MEd, said:
    “Like I say, it isn’t the test that is faulty or insufficient; it’s the work done by the psychologist in interpreting the results of the test. It is always worth remembering that a test result, regardless of what it is, tells you nothing about the testee if there is nothing to link the result to what the person can do in real-life settings.”

    I mean that it is an insufficient tool (particularly speaking about the WAIS and WISC) in the case of ASDs because its use for inference to the person’s overall abilities in non-test situations is unreliable (and unsubstantiated as a subpopulation) as in many instances it seems to test nothing more than the testee’s ability to perform said tasks on the given testing day.

    It seems, at best, a Descriptive tool providing noninferential scores. So as a measure of general intelligence, or even subintelligences, it is potentially unreliable as too many confounding variables can be present in the testing situation.

    So, yes, it isn’t the fault of the tool. But it is named as an “intelligence scale” and so by name alone, I’d think it would fall short of its intended use and therefore not be of much use in measuring the general intelligence in the autistic population.

  22. David N. Andrews MEd (Dec 2006) November 6, 2006 at 23:05 #

    Hi Sophist…

    “I mean that it is an insufficient tool (particularly speaking about the WAIS and WISC) in the case of ASDs because its use for inference to the person’s overall abilities in non-test situations is unreliable (and unsubstantiated as a subpopulation) as in many instances it seems to test nothing more than the testee’s ability to perform said tasks on the given testing day.”

    Ah… okay. Yes, I can accept that. I’d go as far as to say that it is excellent for the assessment of the strengths and difficulties involved but that the overall full-scale scores are (without modification to the protocol) likely to underestimate general intellectual ability. Does that make sense from your point of view?

    “It seems, at best, a Descriptive tool providing noninferential scores. So as a measure of general intelligence, or even subintelligences, it is potentially unreliable as too many confounding variables can be present in the testing situation.”

    There is an extent to which (without protocol modification) your charge of ‘descriptive … non-inferential’ sticks. Personally, I favour the prorating of the top three or four scores on each domain as a usful and more accurate means of estimating general intellectual ability. Better still, I’d use either the TONI-3 or the Raven Progressive Matrices as the general estimate tool, since their estimation power for ‘g’ is much better than the full-scale IQ calculated on the strength of WAIS/WISC. This is partly due to the time-bonus elements of the Wechsler suite… the WASI (which I use) is probably a better version to use given its lack of time-bonus subtests (only the block design test remains of those subtests).

    “So, yes, it isn’t the fault of the tool. But it is named as an ‘intelligence scale’ and so by name alone, I’d think it would fall short of its intended use and therefore not be of much use in measuring the general intelligence in the autistic population.”

    Without protocol modification, or a paralleled general IQ test (TONI-3/RPM), I’d be inclined to agree with that, subject to the caveat I mentioned.

Trackbacks/Pingbacks

  1. Autism Street » Pediatric Grand Rounds: Edition 15 - Nov. 5th - November 5, 2006

    […] I almost forgot. Don’t forget to read this edition’s special section on autism (page 2), which includes an excellent article written by Kevin at Left Brain/Right Brain and features a recent video from Amanda Baggs. […]

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