Is Slate misrepresenting the Neurodiversity movement?

22 Jan

In a word, yes. In, Is the Neurodiversity Movement Misrepresenting Autism?, Slate.com author and autism parent Amy Lutz argues that the neurodiversity movement is essentially dividing the autism community between “high-functioning” adults and parents of “low-functioning” children. Shannon Rosa clarifies this point for Ms. Lutz in Why Did Amy S.F. Lutz Attack the Neurodiversity Movement? That is a more full discussion of the article than here, and I encourage readers to read Ms. Rosa’s account.

I’ll consider two segments of Ms. Lutz’ article. First, what is essentially her conclusion:

What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed.

The author doesn’t see neurodiversity as a “real” rights movement because, in her view, neurodiversity implies that “we are all the same, with ‘intact minds’ that just need to be accessed.”

To anyone who has spent any time seriously considering the neurodiversity movement, the above statement is an obvious misconception. A straw-man argument, if you will. Just start with the name: neurodiversity. How one gets from a diversity movement to “we are all the same” is beyond me. Even after reading the article. Yes, I see the argument the author tried to make. I also know that her argument is full of misconceptions and, frankly, attacks.

I am more moved by ideas than movements, so I don’t use the term neurodiversity much. However, I can put my view simply: you and I think differently, but we are equals. You can derive a lot from that, but it’s one way of seeing “neurodiversity”.

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world.

Let’s take this in two pieces. First, her “overwhelming” evidence is basically arguments that some of the more known names of significantly challenged adult autistics are not what they present themselves to be. An easy argument to make if you misrepresent how these adults have represented themselves. Claiming that Amanda Baggs presents herself as typical of autistic development, for example, is plainly false. It is a rehash of old, tired attacks.

Now to the more important part the supposed division “between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world”.

First off, didn’t she say in the quote above that Neurodiversity proponents see people as being “all the same” and that if they were a “real” diversity movement, they would acknowledge that there are differences? But in this quote neurodiversity proponents believe autism is a “different” way of thinking.

Leaving aside the logical inconsistencies of the article, this line is an old false-dichotomy argument. Who says there is a division between disability and difference? A disability is a difference. Another way to say it is that autism is a disability and a difference. It’s redundant in my opinion, but sometimes redundancy is needed. Would I say “not worse”? Yes. Does that mean I deny the disability? That I don’t acknowledge the challenges posed by autism? That I don’t believe life is more difficult for autistics than non-autistics? No, no and no.

As I read it, Ms. Lutz’ comment implicitly states that disability is worse than not being disabled. From one online dictionary, I get this as the number one definition for “worse”: of more inferior quality, value, or condition. I have no reservations saying that my child has huge challenges, many of which will not be overcome even with great effort. Is any part of my child of “inferior quality, value, or condition”? No. I see different, not less. Not inferior. In need of great support, yes. But as an equal, not out of pity and without taking away rights and dignity.

Ms. Lutz finishes her article by positing that neurodiversity propenents act out of some level of ignorance, fed by what she asserts is misinformation about what autism really is. I believe Ms. Lutz has some ignorance to overcome on her own. She closes with a statement about “kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors” and how “any portrayal of autism that glosses over their profound disability closes the door on them all over again.” I would say that first we need to acknowledge that (a) this is not confined to children and (b) autism and dangerous behaviors can come without intellectual disability, and that segment of the population should not be glossed over either. But that aside, consider the basic question of how do we move forward with a very diverse population and see that all are served appropriately? The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population. But the way forward is not to claim some schism between “high-functioning” autistics and parents of those with different challenges. My experience is that once a person sees a strong civil rights aspect to autism–and disability in general–one sees the need to work for all in the population.


By Matt Carey

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15 Responses to “Is Slate misrepresenting the Neurodiversity movement?”

  1. qchan63 January 22, 2013 at 23:15 #

    Matt,

    I’ve been a believer in the precepts of neurodiversity for a long time (in fact, I wrote a piece or two for this site a few years back). I’ve found it hugely valuable as a framework for thinking about and appreciating my autistic child’s condition.

    But as my child has gotten older, I confess to having had occasional perceptions that are similar to what Amy Lutz describes. Particularly as the definition of autism has broadened, I sometimes can’t help but feel that those who are most vocal about neurodiversity don’t always seem to take into account those who are more profoundly affected by autism, in terms of basic life skills and self-care.

    I applaud those individuals for their continued efforts to spread a message of respect and acceptance for autistic people. But I think part of what Lutz was trying to say (and I don’t agree with all her assertions) is that it can become a problem to the extent that the message starts to obscure the challenges of those autistic people who can’t self-advocate, and are perhaps affected to a greater degree intellectually and behaviorally. (I also didn’t see her piece as an “attack” so much as an effort to stand up for what she thinks is right for her child.)

    By the way, re this statement: “The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population” — that’s a surprising (and pretty vague) assertion. Do you have a reliable figure to cite?

    Thank you …

    • Sullivan (Matt Carey) January 22, 2013 at 23:55 #

      qchan63,

      While not a definitive study, I was shocked and had to do a lot of rethinking of my model of autism when I prepared this presentation for IMFAR. http://leftbrainrightbrain.co.uk/2011/06/01/my-imfar-poster/

      I think the link to the actual poster was lost in the move of the site, but one example is that 93% of parents reported that they expect their child to receive a high school diploma. Fewer than 5% (as I recall) reported their child as non-verbal. Parents are likely biased to present their child as doing better than they really are (in my opinion), but most autistics are not intellectually disabled (the recent CDC report showed this, the Korea study even more).

      When someone promotes the “Amanda Baggs isn’t telling the truth” theme, I take that as an attack.

      It *is* important to focus attention on those with intellectual disability. I proposed a workshop on the needs of this part of the population for the IACC. They accept public comments: if you think more focus is needed, please send those comments. IACCPublicInquiries@mail.nih.gov

      • qchan63 January 23, 2013 at 00:16 #

        Thank you – I agree, those are startling figures. I hadn’t seen that post, so will look forward to reading the details of your presentation.

        And I do agree with you about the assertions in the Slate piece regarding Amanda – that part of the piece was certainly gratuitous.

        I appreciate your thoughts on this, and am glad to hear about your workshop proposal. Hope you will take my comments in the supportive-but-somewhat-concerned manner in which they were intended …

      • Sullivan (Matt Carey) January 23, 2013 at 00:28 #

        your point is well taken.

        This is a topic I’ve been meaning to address. For a reason other than the obvious–much of what a parent with a child with multiple disabilities reads about autism is useless. “this school is good for autism” “this game is great for autism”, etc.. It takes a while to realize that the majority of people, autistic and parent, are talking about challenges that are not the front-line needs of a kid like mine. Children like Ms. Lutz’ child are far from the average in autism. The idea that this should be the model or standard of autism doesn’t help in this respect from two aspects. Taking the parent viewpoint–telling most parents what they should do for children with a different set of challenges doesn’t give them the advice they need, and telling other parents that their child is typical of autism doesn’t help them find good information either.

        There has been a lot of talk about allies–parents being allies with autistics. The fact of the matter is we (parents of children with multiple disabilities) need their support and help as much or more than that need ours. We need them to be our allies. This will be more true in the future.

    • Andrea Shettle, MSW January 23, 2013 at 02:16 #

      In my observation, some of the autistic advocates of neurodiversity who have been accused of disregarding the needs of autistic people who need intensive support for basic care needs are THEMSELVES people who need intensive support for basic care needs and are very much advocates of the (neurodiverse) autistic community receiving the support they need to ensure they are fed, hydrated, cared for, whatever. Amanda Baggs being one prominent and visible example, but there are others out there.

      They may not always be talking about basic care issues in the same blog posts or essays or lectures in which they talk about broader neurodiverse issues. Which may make it easier to overlook or not realize that the EXACT SAME PEOPLE do, in fact, VERY MUCH take basic life skills/ self care needs into account. Just because they talk about neurodiversity (at this particular moment) doesn’t mean they’re disregarding basic care issues. And just because someone may in fact need intensive support for daily living and basic self care doesn’t mean that they don’t still benefit from a general attitude that they are a part of neurodiversity and have equal value to everyone else in society. Which, by the way, is somewhat similar to the way in which people with severe mobility impairments who ALSO need intensive daily support with feeding, showering, going to the bathroom, etc. argue that they still have a right to autonomy, dignity, respect, the right to make their own choices in life and control their destiny, while still receiving the care they need to lead their lives. An adult who wears a diaper, whether because of mobility impairment, intellectual disability, difficulty implementing self care skills, or whatever else, deserves human right and dignity and acceptance for who they are as a person (which is NOT the same as saying that you can’t teach new skills, just saying that if they really like, say, lining up colored blocks, then you let them line up colored blocks. And if they aren’t ready to implement a new skill TODAY, they still get to be treated as a good and worthwhile person. And they still get to be treated that way tomorrow and next year and 10 years from now, whether or not they’re able to learn whatever skill you’re trying to teach them.)

      All this being things that most of the advocates of neurodiversity I have had the honor to read would seem to advocate or agree with.

      So I tend to be wary when I hear claims that people “most vocal about neurodiversity don’t always seem to take into account those who are more profoundly affected by autism, in terms of basic life skills and self-care”. Maybe you’ve just had the misfortune to come across the wrong mix of authors and/or essays, but that doesn’t seem consistent with what I’ve read at all.

  2. qchan63 January 23, 2013 at 00:05 #

    (I should hasten to add that I’ve been outside of the daily back-and-forth on these issues for quite a long time now, so I hope I’m not conflating the neurodiversity discussion with trends that are more in the larger universe of news stories, etc., on autism. I’ve gotten to the point where I hesitate to click on links dealing with the issue because I often don’t seem to recognize my child in the descriptions of autism they put forth. Selfish and shallow, maybe, but true. At any rate, to the extent I may have committed such conflation, I’m happy to supply grains of salt upon request. Thanks again!)

  3. Low Budget Dave January 23, 2013 at 02:33 #

    I suspect that “neurodiversity” means different things to different people. I don’t think anyone would disagree that our children deserve the same basic human rights as the general population. Just because they deserve it, though, does not mean they actually have it.

    Autistic children (and adults) are more likely to have intellectual disability, more likely to be bullied, more likely to be unemployed, more likely to be depressed, and more likely to die early.

    I think we need to distinguish between the quality of life and the right to be respected.

  4. John H. January 23, 2013 at 06:13 #

    I am not really sure how to comment without getting into trouble here……
    I do NOT think my son is intellectually disabled, but he is non verbal, I have advocated for him all his life and will continue too but there have been some that say that just because I don’t agree with them and they have a diagnosis and I don’t that I am evil. I have encouraged my son to communicate in the best way he sees fit and have given him the tools to do so but am not a fan of FC. I believe in teh neurodiversity movement because I do believe that it will benefit him but I am not a fan of some of the individuals that speak for the movement because I don’t see there messages as adding value…..So as you can see there is some confusion on my part.

  5. Lara Lohne January 23, 2013 at 07:27 #

    One thing that many people seem to forget, is these ‘high functioning’ adults were children once, and many of them were not considered ‘high functioning’ when they were children. With support, proper tools and just the process of aging, growing, their executive functioning was made more stable by being able to self regulate better, thus increasing their appearance of functionality. But they still struggle with sensory processing issues, communication issues, and all the other issues that come along with autism. They have just grown up, are no longer children, and during the years have learned ways to handle the issues that challenge them when they need to. I’ve read many accounts of adults coming home and stimming for hours just to be able to ‘reboot’ from the day’s events. Autism is developmental delay, not stasis and with time, patience and practice, anyone can progress, at least to some degree. My son, right now, is not what anyone would considering high functioning, not with the amount that he stims, and he stims all the time. He can talk, for the most part, recognizes letters, numbers, knows letter sounds and can recognize some words on site. But he is constantly stimming, even if it’s just jumping or running, or shaking his hands in front of his face, or humming really loud. And those stims are what allow him to be able to recognize letters and numbers and speak and do all the other things he is able to do. The stimming allows him to process things better, his executive functioning. As he gets older, he may not need to stim as much, but since he’s growing and learning new things all the time, and experiencing new things all the time, each one of those things take its toll on my son. His stimming is his way of showing me that he ‘gets it’ and is excited about it. Basically, the children of today will be the adults of tomorrow, but the adults of today were the children of yesterday, and when they were children, they were probably a lot more like the children of today then they are now. Time can change everything. I am interested in a world that will accept, respect and value my son, with or without his stims. The neurodiversity movement is attempting to do just that. I don’t see that as a bad thing at all.

    • futuredave5 January 23, 2013 at 08:16 #

      Lara; That is a nice post. I actually copied those last three sentences and saved them to remind me of the goals that we all share.

  6. Amy January 30, 2013 at 06:33 #

    Mr Carey – when you say “The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population”, do you have your facts straight? I ask because the CDC estimates upwards of 40% of autistics also have ID. That is in no way small. For those of us that have loved ones that absent a miracle will probably never lead independent lives, autism is most definitely a disability not just a diversity issue such as different ethnicity or whatever. Regardless of political correctness, being disability is OF COURSE worse than being an able-bodied person. That doesn’t mean disabled people are inferior by any means so perhaps the dictionary meaning or the word “disabled” is what needs to be changed if that is what is leading you to your faulty conclusions.

    • Sullivan (Matt Carey) January 31, 2013 at 01:50 #

      First, let me point out that I should not have accepted the author’s framing of this issue. The fact that the author’s son is part of a subpopulation which needs better representation and support is not something I dispute. I wish the author had published her IACC statement at Slate instead.

      Second, I don’t think for advocating for this topic it is highly important what fraction of the autistic population has intellectual disability. Resources should not be allocated based on some argument of fraction of population, but on need. Autism represents only 1% of the population. Do we ignore the population with ID or with self-injury and/or aggression because they are a minority? Clearly not.

      Third, to answer one of the questions posed, the most recent CDC estimate is that 38% of the *identified* autism population has ID. I fully expect this to drop further with time. “Small” minority, no. Minority, yes. And reducing in size as identification gets better. Before I go into the details of why I think this will happen, let me point out why this is important to this discussion: framing this as an issue of “we are a large percentage of the population, so we are important” will become more and more weak with time.

      As we do a better job identifying autistics, we find a larger and larger fraction without ID. The Korea study found 2.6%, of which a large majority did not have ID. A significant fraction were not even receiving any services at all. Also, consider two of the states in the latest CDC estimate with high prevalences: Utah and New Jersey. Utah has about 13% with ID. New Jersey 27%. I think Utah is extreme, but I do think that the trend is moving towards a population with much less ID than previously thought.

      And that is with ID as anything below IQ=70. When we move to more of what many consider “classic” autism, with nonverbal or non conversational, and more than mild ID, it is going to be even smaller.

      Why does it matter to be accurate about this? Many would argue that it weakens the position of those who advocate for the autism+ID population. Two reasons. The first I mentioned already. Telling new parents that “classic” autism is the norm in autism sends them on the wrong paths. They think that much of what they read or hear about autism applies directly to their child. I know people with kids in “autism” schools which are clearly inappropriate for their children. The level is academic when their kids need a more functional approach. Instead of making slow progress in a functional program, they make little or negative progress in an academic program because the material isn’t focused on their needs and they are presented daily with the frustrating fact that they can’t keep up. But it’s an “autism” program, right? It should work. Problem is, by the time the parents figure out that their kid has very different needs from the other members of their class, they have lost time and had setbacks. Had these parents been informed that their child has challenges and needs greater than even the average autistic, they might have been in a better position to advocate and chose a path for their children.

      The second is a lesson learned from the vaccine causation groups. One can and should learn from other people’s mistakes. The vacation causation groups have continued to act like they are the real voice of autism advocacy and that they represent the real needs of the community, being, as they assert, the majority. It is obviously divisive. And it has served to sideline them rather than increase their ability to advocate for their ideas. Rather than build alliances, they have built in division.

      Is there really a division on the issue Ms. Lutz is advocating? I would say no. I know enough self-advocates who are or have been self injurious, and others who are aware of the issue, to know that there are allies for Ms. Lutz’ cause within that community.

      Self-injury is more common among individuals with ID, but it is not absent among those with higher IQ’s. There’s no reason to frame this as a division between groups. It isn’t accurate and it doesn’t help promote the cause.
      I feel it is unfortunate that Ms. Lutz didn’t present her oral testimony to the IACC in place of what she wrote at Slate.com. It was much more effective in making her point. Some aspects could have been left out and it would have been as effective or even more so.

      My hope yesterday was that we were going to have discussions about workshops going forward with the IACC and one of my suggestions was a workshop focused on the needs of the autistics with ID, especially those with moderate, severe and profound ID. While I don’t see self-injury as solely a topic for this sub population, it is an important topic and I thought it would be a valuable part of that discussion. This in spite of, not helped by, the piece in Slate.

      “For those of us that have loved ones that absent a miracle will probably never lead independent lives, autism is most definitely a disability not just a diversity issue such as different ethnicity or whatever”

      I think you would find few people to disagree with the idea that autism is a disability and not just a diversity issue. As discussed above and many places elsewhere. As such parents, I and many others found Ms. Lutz’ piece incorrect on many points. This being one.

      “Regardless of political correctness, being disability is OF COURSE worse than being an able-bodied person.”

      For whatever help this may be to you, calling someone else’s considered opinion “political correctness” reads as being dismissive of the thought that went into it. If that was the intent, fine. It doesn’t help matters.
      “That doesn’t mean disabled people are inferior by any means so perhaps the dictionary meaning or the word “disabled” is what needs to be changed if that is what is leading you to your faulty conclusions.”
      I disagree that my conclusions are faulty. If you read your statement, you have given no reasoning to discuss, just a long statement that I am incorrect. My conclusion is that many people attach the connotation “inferior” or similar ideas to the word “worse” and perhaps a different word would have conveyed the idea without the negative connotation.

      If you have a different read of the word “worse”, fine. Many people, I included, hear worse and understand “inferior” to be a part of the definition. The definition follows usage, not the other way around.
      The disabled *are* treated as inferior much (many would say most) of the time. Language which adds to that can and should be avoided. If Ms. Lutz did not include “inferior” as part of her message in using “worse”, perhaps she could find another word?

      All this discussion avoids the fact that Ms. Lutz’ statement was a straw man argument. Her view of neurodiversity is not the opinion of those who espouse it. Assume she meant something other than “inferior”. Assume she meant, “more difficult, presents greater challenges, a disability” or some such phrase for “worse”. Neurodiversity advocates do not promote the idea that autism is not a disability, that disability is not more difficult. Far from it.
      Being disabled is different. Being disabled is also a harder life. It presents greater challenges, some or many of which will not be overcome. I understand that you don’t see “worse” as giving a connotation of “inferior”. I’m just asking you to consider the fact that I and others do.

      Amy Lutz has a good point to bring up in highlighting the needs of this population. Ironically, she framed the discussion around there being a division within the autism community while being a part of the division not the solution. She repeated misconceptions about a group of people who are natural allies to much of her cause.

      • futuredave5 January 31, 2013 at 18:59 #

        Matt, I think you are correct, but I still think the only thing people are missing is common definition of terms.

        Michael Vick is paid more than I am because he is better at sports. It does not make him a better person. We are not judged by our abilities, we are judged by how we use them.

        Similarly, my son is not likely to become a lawyer or an athlete, (he does not lie very well, nor run very fast.) But those are not the standards I use to encourage him.

        It is too early to tell if my son will be intellectually prepared for the first grade. But my son has just as much ability to be happy as anyone else.

        Not everyone who is happy is a genius. Not everyone who is a genius is happy.

  7. Science Mom February 1, 2013 at 01:46 #

    Futuredave5, that was a nice heartfelt post. That made me cheerful.

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  1. Am I “Crazy” or “Neurologically Different” or What? A Curious Incident of a Girl in the Night-Time « - March 8, 2013

    [...] Is Slate misrepresenting the Neurodiversity movement? [...]

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