Autistic, Allistic, Neurodiverse, and Neurotypical: Say what?

Coming into the neurodiversity movement, there are some terms that a new person might not be familiar with. I’ve been seeing a lot of questions about some of them, and some misunderstandings about them as well, so it is perhaps time for writing something on these terms.

If you are reading this blog, I’m assuming that you know what Autistic means in a general way. Some of you might still hold some misconceptions about autistic life, but I believe that to be a part of the learning process. You are reading Autistic voices either here or on the blogs of other Autistics, hopefully learning from it, and that is what matters.

You’ll notice that I use “autistic” rather than “person with autism” throughout. This is intentional. The basic idea is that my being is autistic- the patterns my brain form thoughts in, the essentials of the way I perceive and learn from the world are autistic. Autisticness is, for me and many others, an essential part of what makes me, me. Saying I am “with” autism denies this reality.

There are many brilliant writers who have addressed Autistic vs person first language in more depth. Jim Sinclair, one of the Autistic community’s elders, wrote a piece in 1999 on the issue which you can read on Cafe Mom. Many others have echoed and expanded upon Jim’s thoughts since then. Lydia over at Autistic Hoya has written a number of posts on identity first language vs person first, including “The Significance of Semantics: Person-First Language: Why It Matters” which ends with a list of links to other writers on the issue.

Some people’s constructions of how they phrase their identity are very personal, others political, and a good number both. I have multiple disabilities, and have a mixture of phrasing for myself. My own preferred construction is “Autistic with anxiety/chronic pain/etc.” When I expand that beyond ability it gets more complex, but I will leave it at this because eventually listing every part of my identity, regardless of relevance, becomes a metaphorical rabbit’s hole.

Allistic, on the other hand, means “non-autistic.” (Some people use “neurotypical” this way, but I”ll get to why I disagree with that usage in a moment.) That is all it means. It doesn’t mean someone is intrinsically better or worse, and it doesn’t indicate ally-hood or opponent-hood. It just means that someone is not autistic.

Allistic is a term that members of the autistic community came up with. While the earliest mention I can find (Zefram, Fysh.org, 2003) is constructed to work in a parody, the word construction makes a lot of sense. So much so, in fact, that Zefram’s work isn’t known to many community members now using the term. In Zefram’s postscript, it is explained that the construction is based on the way that the word “autistic” is constructed:

The word “allism”, invented for this article, is intended to precisely complement “autism”.
It is based on the Greek word “allos”, meaning “other”,  just as “autos” (in “autism”) means
“self”. […]

This explanation of “allistic”‘s construction continues to be in use. As some might note, the relative constructions of “autistic” and “allistic” are not dissimilar to the relationship between the words “transgender” and “cisgender.”  Even if the alternative was developed to suit the needs of politically charged parody, allistic is linguistically a more accurate term than some of the alternatives.

Neurotypical is often used interchangeable with allistic, but I would argue that it isn’t actually interchangeable. Neurotypical is short for “neurologically typical”- within the typical range for human neurology. Obviously it wouldn’t make sense to say that someone with definitively atypical neurology was neurologically typical just because their atypicality wasn’t that they autistic. Indeed, the Neurotypical/neurodiverse terminology has been adopted by certain segments of the Mental Health consumers/survivors communities for this very reason.

On-going usage aside, from what I recall the initial usage was one that is synonymous with the current “allistic.” However, between the acceptance of autistic cousins (those who aren’t autistic but who have similarities, including those with ADHD) and the penetration of the term beyond the initial communities it swiftly became used more diversely. Eventually, the more diverse (and in my mind accurate) usage meant that a more accurate term for non-autistic was needed. (Which brings us back to Allistic!)

Neurodiverse can have two meanings depending on what it is talking about. When referring to individuals, it simply means that the individual(s) in question have neurologies that are neurologically atypical. AKA, that they aren’t neurotypical. Generally speaking this usage is not used to just talk about Autistics, but is inclusive of other people whose neurology is atypical.

When discussing a population sample, though, it can mean that the neurologies represented are diverse. In this usage, the people in question include more than one type of neurology, and may even include members with individually typical neurology in some instances. This is the less common of the two usages that I’ve seen, though.

I hope that this was useful. For those interested in more information about the origins of certain aspects of autistic culture, I recommend you read Jim Sinclair’s History of ANI, which documents the early days of the autistic culture movement through the establishment of Autreat.

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Personal note: I’ve been a bit distracted so far this month and have had issues coming up with something to write for here- while at the same time, preparing for putting things out elsewhere later this month. That I haven’t done much writing here so far this April hasn’t sat well with me, so I figured it was time to do another terminology type post. This isn’t the best post I’ve written, but it is what I have for you today.

ID, DD, and Cognitive Disabilities.

I’ve noticed a trend of using Intellectual Disability (ID), Developmental Disability (DD), and Cognitive Disability interchangeably. I find this extremely problematic, and wanted to suggest some guidelines as to what these terms mean

Developmental Disability– The Administration on Developmental Disabilities defines a DD as something that, starting before the age of 22, impairs or alter’s one’s ability to perform 3 or more certain major life activities listed on their page. They also state that it can be either physical or mental. (What is a Developmental Disability?) On a page that is designed for bureaucratic rather than accessible language, they elaborate that this means life-long disabilities that are “likely to continue indefinitely.” (OPD’s Factsheet on the Administration on Developmental Disabilities.)

What sort of Disabilities are included? While IDs aren’t uncommon, DDs include disabilities which might or might not have any ID co-morbidities () such as Cerebral Palsy and Autism Spectrum Disorders*.  There is a tendency to assume that if an individual has a DD they must have an ID, but this is a stereotype. It is built in part on the fact that some DDs effect the ability to communicate in a typical fashion, and so early work in the field assumed certain things about the intelligence of those with DDs as a whole.

Basically while a lot of people who fall under the DD label also have IDs, Having an ID isn’t a necessary part of having a DD.

Cognitive Disability– Cognitive Disabilities are not the same as Intellectual Disabilities, either. Cognition- while a part of intelligence**- is not exclusively intelligence. It also includes how we learn, and how we organize ideas.

I like how Opera defines Cognitive Disabilities:

These conditions affect a web user’s ability to perform one or more mental tasks. This includes problems with:

  • reading text
  • memory
  • problem solving
  • keeping focused (attention span)
  • computation (for example calculations)
  • non-verbal learning (for example difficulty with written materials)

(Opera’s Web Accessibility for Cognitive Disabilities and Learning Disorders.) Executive Functioning difficulties fall under this concept of Cognitive disabilities.

The most common alternate for this tends to be Learning Disabilities. I think it’s important to note that this includes the executive functioning issues in those with ADD/ADHD. Other examples of Cognitive Disabilities that aren’t always covered under IDs include Dyslexia, Dyscalculia, and even Traumatic Brain Injury (TBI). Additionally, TBI generally isn’t considered a DD. (And, on a personal note, is my sister’s Dx.)

Intellectual Disability– When one thinks of the old classification “Mental Retardation”*** it typically is referring to those with IDs, even though the old label was sometimes used for DDs.

The Equal Employment Opportunity Commission (EEOC) and the ARC give the definition of Intellectual Disability as

Intellectual disability is a below-average cognitive ability with three (3) characteristics:

  1. Intelligent quotient (or I.Q.) is between 70-75 or below
  2. Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as self-care, socializing, communicating, etc.)
  3. The onset of the disability occurs before age 18.

(The Arc, Intellectual Disability.)  While I have issues with the way we measure Intelligence/IQ, this seems to be the most workable definition.

Some examples of those who may or may not have Intellectual Disabilities are those with Down Syndrome, Fetal Alcohol Spectrum Disorders, or Fragile X syndrome. The ARC also mentions that an estimated half of the population with Intellectual Disabilities do not meet the definition for having Developmental Disabilities.

In Closing

While one can have Intellectual, Cognitive, and Developmental Disabilities at the same time, they are not interchangeable terms. It is possible to have one without any of the others, only two, or all three types of disabilities.

This is true even when you are looking at people with the same dx. Though most people with Down Syndrome have IDs, not all do.  While FASD awareness (and services?) are under SAMHSA, those with it might also have IDs. Someone With Cerebral Palsy has a DD, but might only be effected physically. Those with ADHD have cognitive disabilities but might not have either ID or DD, though they could also have both.

So, please, keep in mind the population that you are talking about. When you are talking about having Autistics share their stories on your site, ID isn’t really the best term, because you cut/erase a heavy percentage of Autistics that way. When looking at website accessibility remember: just because the content isn’t something you can make ID accessible, doesn’t mean you can’t make it more cognitively accessible.

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* Note that the National Institutes on Health site article linked above is using the Current DSM’s definition. The new DSM coming out merges Asperger’s Syndrome and PDD-NOS, though they are linked out as separate in the article linked above.

** Note: The concept of intelligence is considered flawed by many people. I am using it because it is the terminology/lingo that is used in both the advocacy and service provider communities. Additionally, I have seen references that the Education system lumps cognitive disabilities under Learning Disabilities, and uses cognitive disability to mean Intellectual Disability. . . I’m not so familiar with Education from the educators end. Feel free to let me know more in the comments.

*** I oppose the use of the R-word, however some government sites and some state/local systems still refer to themselves as MR services. This is the reason why “Mental Retardation,” in quotes, is mentioned. My own county, in fact, still refers to it as “MR”, usually in the jumble of human services that locals call “MH/MR.”

In response to a journalistic approach

I read an article today, and it is spurring me to write two blog entries. This one addresses the article itself; the other talks more about Non-profit use of articles and releases written by others and some ethical issues surrounding that.

The article in question was published in the Raleigh News Observer under the title “Study: Four killings reported in rest homes“.  The lede is “In the past two years, at least four residents of North Carolina rest homes have been killed by fellow patients who had histories of severe mental illness and violence.

In all honesty, it’s a pretty standard approach used in journalism to use a “bloody” headline and/or lede to grab attention. But is it the right thing to do, especially when talking about an already vulnerable population? Does it not contribute to some of the problems of stigma we face today, not only for those with Mental Health disabilities, but in the larger disability community?

Most of my comments here won’t make sense unless you’ve read the article. Go on, click it, I’ll wait.

First off, the placement of people in nursing homes is actually a misappropriation of the implications of  the Olmstead decision. For the vast majority, the nursing home is *not* the least restrictive environment, and for some it is further inappropriate. The language in the article doesn’t seem to recognize that the warehousing of patients in nursing homes is exactly counter the opinion put forward by the courts.

This study further worries me, because the way it is presented starts out with wording that is extremely negative about people with MH disabilities, and might lead those who do not read the entire thing to assume that taking people *out* of institutions was wrong. The public might not be familiar with what exactly Olmstead was, or even the breadth of human rights protections the ADA affords.

Towards the end it makes comments on the horrible conditions. If you *do* know your history, you can recognize as rather identical to the sort of institutional care that we have been trying to get people out of, but few people know their institutional history.  It does not adequately suggest what the appropriate measures would be. It does not call for change, but instead allows the imagery to “fester” in the reader’s mind, where someone with less of a background in the issue might come up with some very frightening “solutions” indeed.

This perspective is very much one that favors the provider, as well as the social worker voice, over that of the consumer (remember, nursing home placement is generally speaking 18+), especially with the emphasis on homelessness as the only visible alternative (rather than showing examples of the underfunded and harder to get a spot in alternatives) and this treatment leaves me worried. While yes, it is true that many would currently end up in the streets, very little mention is given to the sorts of programs that are *supposed* to be the alternative, but are under funded.

How are we supposed to rise support for something to be appropriately funded if the information we give out doesn’t explain what exactly that *means*?

There’s another question here, too, when it comes to the professional view bias. It’s one that has been repeated over and over in the history of institutional placements of all sorts. Owners and superintendents have manipulated the public perception of various populations in order to increase their standing, power, and funding in the public. Just as a politician manages public perception of himself, professionals manage their and their clientèle’s perception. And so half-truths and misleading information about populations in institutions abounded.

While today, the Eugenics hot topic focuses on pre-natal testing, in the early 20th century the argument was focused on Sterilization. The idea was that those with developmental or intellectual disabilities were either too fertile, or unable to protect themselves from unwanted advances. With the rise of the concept of Social Darwinism in the late 1800’s, it became more and more worrisome that there was a possibility of so called “degenerates” reproducing.

At first, some superintendants supported the idea of sterilization privately. There was an initial reluctance to publicize this, though, for fear that they would lose funding for patients that, once un-sexed, might be returned to the community. Over time both the concept of the disabled as a public menace and issues of over-population in institutions grew. Eventually, in the face of a lack of space for larger and larger intakes, they shifted their public support to sterilization. Privately, their letters show that as they gained more public support for the procedure they grew doubtful about the actual usefulness outside of institutional control. *

Back to the lede and title.

The fact that it leads with “four killings” caused by “other patients” with no mention of the deplorable conditions until later on is extremely troublesome. It uses, instead of the entirety of the problem, something that PLAYS SPECIFICALLY on stigma the public holds towards people with MH disabilities. In fact, there is very little relevance to the subject of the article in the lede. Deplorable conditions should be “bloody”  enough to grab headlines, and that is the real focus of the article.

Even if you are a parent rather than an individual with MH disabilities, there needs to be a recognition that leading with this sort of stigma will *not* help in the long run. Instead, it will just perpetuate the stigma so that when someone who is a minor right now reaches age of majority, the stigma will still be as virulent as ever.

In my eyes, to ignore all of this in writing an article on this topic is negligent- not as a journalist, but as a human being.

*For more information about the history of the treatment of the Developmentally Disabled, I would recommend Trent’s “Inventing the Feeble Mind

The Terminology Post

Note: This post has been back-dated for organizational purposes (aka, to put it with the other intro posts).

I might use some unfamiliar terminology or Abbreviations. In order to avoid confusion, I’m creating this post.

Please let me know if there are any terms in my blog that are unfamiliar to you, so that I can expand this post! Remember, I don’t know what you do or don’t know and the only way I’ll learn is if you tell me.

Organizations:

A lot of times, I will reference Non-profits by their Abbreviations. But to those unfamiliar with them, this can be confusing. I know that I wouldn’t know the abbreviations for organizations in the field of Physics or Mathematics!

ASAN- Autistic Self Advocacy Network (Wikipedia | Website)

NYLN- National Youth Leadership Network (Website)

ANI- Autism Network International (Wikipedia | Website)

PFI- Pennsylvania Families, Inc. (Website ; The State Wide Family Network for Pa)

PYLN- Pennsylvania Youth Leadership Network (Website)

Abbreviations
aka, Alphabet Soup.

ASD- Autism Spectrum Disorders

AD(H)D- Attention-Deficit (Hyperactivity) Disorder

DoEd- Department of Education

MSM- Mainstream Media

Terminology
Sometimes reading about a topic can be like trying to read Les Miserables in the original French with only a little French under your belt. While I try to keep acessible, I do use some terms that could be unfamiliar to some people.

Neurodiversity- (n) an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation. (Urban Dictionary | Wikipedia)

On Spectrum; Spectrumy- someone with an Autism Spectrum Diagnosis or suspected diagnosis.

Spectrum Cousin- Someone with other Neurological/Developmental divrgences such as ADHD, OCD, and others that might share traits with those on spectrum. For example, my mother has ADD, Narcopelsy, and Fibro Mylgia and would be considered a “Cousin.” Also known as an “AC” or “Autistic Cousin.”