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December 27, 2009 | |
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27 December, 2009
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Of Interest~
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The Language of Autism It’s happened a thousand times. I tell someone my son is autistic and there’s a pause, just long enough to inject a little tension into the conversation, and I can almost hear the gears turning as they struggle with the question: ‘What do I say now?’ Fair enough. Considering the mysterious and multifaceted nature of this condition, as well as the wide-ranging chorus of voices (some of them quite shrill and angry) weighing in on the topic through the popular media, the confusion and discomfort are more than justified. In fact, for someone outside the autism community, confusion may be the only rational response. Unless you’ve had personal experience over an extended period of time with autism, there’s no way to know what the word means; even those who have that experience still struggle to find a single solid idea that encompasses the whole of the subject. The responses that follow the uncomfortable pause run the gamut from insightful to inappropriate; the latter is always unintentional which makes it hard to be offended. I am sometimes anyway, I’m sorry to say. Often, it’s not the thought but the choice of words that is unpleasant, which would seem to imply that we’ve entered the sticky realm of Politically Correct Language. However, as with most things having to do with autism, it’s just not that simple. So let’s endeavor to lift some of the fog surrounding autism by exploring the language—words and phrases—indigenous to the territory. A brief warning before we begin: language is fluid and dynamic, in a constant state of non-linear nonsensical flux which makes it simultaneously fascinating and maddening to study and explain. Some of what I write here today will no longer be true tomorrow. Proceed with caution. Autism/Autistic—simplified labels used to describe those with Autism Spectrum Disorders (which I’ll get to in a moment). The use of these terms should be straightforward, one would think, but this is just not the case and employing them incorrectly can be inaccurate as well as inappropriate. Autism is not, at this time, a condition that can be diagnosed through medical procedures or testing; can’t do a blood test, a CAT scan, an MRI, or any of the like to find it. It’s not, an identifiable physical disease. The current version of the Diagnostic and Statistical Manual of Mental Disorders (commonly referred to as the DSM-IV and considered the standard reference in the associated fields) lists more than a dozen diagnostic criteria, all of them behavioral rather than physical. The National Institute of Mental Health (NIMH) recommends that an initial screening by a physician be followed by a comprehensive diagnostic evaluation, often performed by a multidisciplinary team of psychologists, psychiatrists, speech and occupational therapists, and others with experience in autism assessment. My son’s school district provided this team, as much to determine his eligibility for services as his condition. Because autism is not a physical disease, saying “my son has autism” in the same way one would say “my son has the flu” isn’t quite right. So, then, if my son doesn’t have autism, perhaps it would be more accurate to say, “I have an autistic child.” However, for many the preferred way of expressing this idea is to put the person before the condition: ‘I have a child with autism’ rather than ‘an autistic child.’ It is a way of denoting and emphasizing that my son is, first and foremost, a child, just a little boy, and that the autism is only part of who he is. You might argue that this is semantic hair-splitting, but it truly makes a difference in how one views parenting as well as the autistic community as a whole. How much of a difference does this sort of distinction really make? Hard to say precisely but consider this: the next time you’re ordering fast food, try asking for fries and a burger instead of a burger and fries and see how it feels. Just a little weird. However, if you think this matter is settled, allow me to disillusion you. I’ve seen distrust and dismay expressed toward people who use ‘child with autism’ rather than ‘autistic child.’ The argument is that the former makes the autism seem like an appendage when, in fact, it is woven into the substance of the individual and should be viewed as an integral part of the whole person. Jim Sinclair, an autistic adult and one of the founders of Autistic Network International, writes in his seminal piece Don’t Mourn For Us (required reading, or should be, for every parent who’s just gotten the news), “Autism is not a way of being. It is pervasive; it colors every experience, every sensation . . . It is not possible to separate the person from the autism—and if it were possible, the person you’d have left would not be the same person.” And I have to say that’s a very strong argument. Unfortunately, it leaves us on very shaky linguistic ground. Thankfully, there’s a side door that can often get you around this minefield. ASD—Autism Spectrum Disorders, which is the clinical name for the collection of functional differences and deficits commonly referred to as autism and includes Asperger’s and other variants. The use of the word ‘spectrum’ here refers to the wide range of mix-and-match behaviors that are autism indicators. More and more these days, I find myself using the term ‘on the spectrum’ when referring to my son or others who are . . . well, on the spectrum. It’s broad and non-specific yet very clear and keeps me from having to dance the semantic dance described above. PDD—Pervasive Developmental Disorder which is, according to the NIMH, an alternative to, and equivalent of, the term ASD. That parity doesn’t necessarily hold up in common usage: PDD can refer to conditions (Rett syndrome and childhood disintegrative disorder) which may or may not be considered autism depending on who’s doing the classifying (and, honestly, I’m passing up the opportunity to have an opinion on the matter). In short, all ASDs are PDDs but all PDDs are not necessarily ASDs. Good luck with that one. TYPICAL vs. NORMAL—This is a pretty big deal inside the community. Normal is considered a character judgment. Typical, not so much. It’s the difference between saying to someone, “You know, you’re kind of unusual” and “You know, you’re not normal.” Tread lightly. The unspoken message purveyed when referring to ‘normal children’ is that kids on the spectrum are abnormal. And that’s offensive, not just to parents but adults on the spectrum as well. It’s a whole new N word, as though the world needed one. The truth is, I’ve struggled with this, catching myself right at the ‘r’ in ‘nor—’ and making a quick U-turn back to ‘typical.’ I think the difficulty lies in the fact that in common usage, the two words are interchangeable. But, once again, there’s a useful alternative. NT—Neurotypical, referring to anyone not on the spectrum and steadily replacing ‘typical’ for this purpose. The flip side is ‘neurologically atypical’, used to refer to those on the spectrum. It’s a mouthful, but it’s worlds better than ‘abnormal.’ I like it because it gets to the heart of the matter; my son is, in so many ways, just an eight year old boy. Neurologically, he’s very unique— out of the ordinary, but otherwise . . . just a kid. The NT designation is used a lot by bloggers in the community and it’s turning up more and more on ASD organization websites. APSIES/AUTIES—people with Asperger’s syndrome and autism, respectively. Most people have a pretty good idea what Asperger’s is so I won’t provide a lengthy explanation (for those who don’t, you’ll find some good answers here). These terms are used most commonly in blogs by, and bulletin boards for, adult autistics. If you’re surprised by the idea of people on the spectrum blogging and posting in online forums, consider yourself enlightened; there is a strong, vocal (and I mean to include those who cannot speak but can write you and me right out of business), and increasingly radical community of Auties and Aspies who are unashamed and fit to be tied. They are particularly tired of being considered tragic mistakes that need to be fixed and, ultimately, eliminated, and they present some very well founded arguments in support of their position. If you’re interested, try taking a tour of WrongPlanet.net. The name refers to the widely held feeling in this community that, because they are neurologically atypical and experience life so differently, Aspies and Auties are literally trapped in a world they never made. Alien references are not uncommon. For high-quality meaningful writing, try Dave Spicer. For blogs try Whose Planet Is It Anyway (written by The Autistic Bitch from Hell) and The New Republic; they are both good examples of voices from the community. Honestly, as a parent, I have to say the best and most relevant information I have gotten on the subject of autism has come from adults on the spectrum. ND—Neurodiversity, the belief (some might call it a burgeoning movement) that the presence of atypical neurology in humans is not just okay but actually healthy for the population, and the idea of a ‘typical’ neurology is both inaccurate and oppressive. Big among those on the spectrum. It is inclusive, encompassing not just ASD and PDD but ADD, ADHD, and other conditions as well. It’s a complex subject, but this excellent article by Thomas Armstrong explains quite nicely. For a more satirical take, try the Institute for the Study of the Neurologically Typical. SAVANT—or Autistic Savant, never the atrocious and, thankfully, antiquated Idiot Savant. It refers to those who have extraordinary abilities in a particular area: music, art, mathematics, memory. Think Dustin Hoffman in Rain Man. I’ll skip any lengthy explanation or examination of savants because they get plenty of coverage in the media. In fact, too much coverage: only one in ten people on the spectrum have savant abilities while (it seems to me) only one in ten autism programs, stories, and movies are about non-savants. TV loves savants, and I think it’s fair to say that TV loves savants because the general public finds them fascinating. Me, too. That said, there is a bit of a freak show quality in having all this attention paid to a sliver of the community. And the focus always seems to be on the abilities rather than the people and their lives as a whole. The other problem with this hyper-focus on savants is that it has resulted in a skewed perception of the overall autistic population. When I tell people my son is autistic, some of them (enough to be disturbing, I’m afraid) respond by asking what his talent is: Does he play an instrument? Is he good at math? Can he draw? (My standard snarky response is, “No, he’s just a normal autistic.”) Not their fault, really, but that doesn’t help me feel any better about it. So, please, when someone tells you their child is on the spectrum, don’t go there. Trust me, if the kid has any unique talents or abilities, the parents will let you know…even if you’re not interested. HFA—High Functioning Autistic. Don’t know exactly what it means? Don’t worry. Neither do teachers, doctors, behaviorists, psychologists, clinicians, or people on the spectrum. It is a non-specific term for which no absolute criteria has been established, yet somehow it’s entered the popular lexicon. All those with Asperger’s are considered high functioning; after that, it get’s very fuzzy very quickly. You rarely hear this term from members of the community. In fact, the only time I ever hear it is when I tell people my son is on the spectrum. “Is he high functioning?” Well, I don’t know. He cannot speak, he’s very emotionally responsive with lots of hugs and kisses, he has shown the ability to listen and understand when spoken to, he is learning to spell, he flaps his hands and makes unusual sounds at inappropriate times, he is subject to fits of rage beyond what would be considered typical, he is a whiz with a computer but can’t seem to grasp why he’s not allowed to play with the cash register at Target, and so on. You get the picture. So is he high functioning? I don’t know and neither does anyone else. I strongly recommend you steer clear. AAC—Augmentative and Alternative Communication, usually refers to a device used to facilitate communication for those without speech. Think Stephen Hawking. The individual highlights words from a list (or spells them out alphabetically) and the device does the talking. Younger children and those who have difficulty with written words use devices that employ symbols instead. A huge benefit for nonverbal people on the spectrum. Another form of AAC is picture exchange, a system using small cards with symbols and words that are used to communicate needs and feelings. Picture exchange is often referred to generically as PECS (Picture Exchange Communication System) however PECS is the trademarked name of a specific teaching protocol that employs picture exchange. It’s safe to say that PECS is to picture exchange as Kleenex is to tissue. IPP/IEP—Individual Program Plan and Individual Education Plan. In each case, a written assessment of an individual’s needs and a plan to provide services based on those needs. The ‘spectrum’ nature of autism means that any one-size-fits-all services or education plan will almost certainly be inadequate and inappropriate for most. IPPs are developed by social workers or government case workers and parents while IEPs are developed by teachers, therapists, and school administrators working with parents. These terms seem to be pretty universal. However, just to keep things confusing, in Canada IPP is Individual Planned Program. DIVORCE—Now, why would any discussion of the language of autism include the word divorce? Because inevitably any conversation having to do with autism leads to the observation that 80% of parents with children on the spectrum end up divorced. 80%, a clear indication of the devastating impact autism has on families. Everybody’s heard it. It’s common knowledge. And it’s not true. The 80% figure is a vaporfact, a piece of information which is ubiquitous and widely accepted and has no scientific basis or statistical source. To be certain, I contacted the Interactive Autism Network (IAN) at the Kennedy Krieger Institute in Baltimore, MD. IAN acts as a connection between the community and researchers, collecting data which is then used in research studies (if you or your child are on the spectrum, please consider joining). They responded by saying:
The following paragraph comes from this report:
(You'll find the Easter Seals survey available in PDF; the divorce findings are on page 39.) Still, the 80% figure continues to circulate and proliferate, quoted over and over and over, often by seemingly reliable sources. Autism Speaks, a leading autism advocacy group (which, it’s interesting to note, provides the funding for IAN), produced a short video called I Am Autism which included the line “and if you are happily married, I will make sure that your marriage fails.” They didn’t just release it online; they premiered it at the Second Annual United Nations World Focus on Autism in New York City. And it’s not true. The other reason I’ve included divorce here is that the pervasive nature of this ‘fact’ has made some people feel okay with enquiring about the reasons behind the failure of a (read: my) marriage. Folks who would never dream of asking, “Did your drinking have anything to do with your divorce?” or “Did your hair loss have anything to do with your divorce?” or “Did your cancer, weight gain, addiction to porn, persistent halitosis, et al have anything to do with your divorce?” have no qualms about asking if someone’s child was at the root of their failed marriage. It’s a horrible suggestion even if it’s true. This is what I like to call a Third Latte question: you’d better be in a very secluded corner of Starbucks and into your third cup of a deep conversation before you even consider asking. Better yet, wait for the person to offer up. If they trust you enough to talk about it, you won’t have to ask. So, how should you respond when someone tells you they have a child on the spectrum? Well, you’d do well to avoid seeking out the negatives. Steer clear of the controversial. Try, “How old is he?” “How’s she doing in school?” “Do you have any pictures?” (That’s always a winner.) Ask the same questions you might ask about an NT child. Avoid getting too personal and don’t pretend to know more than you do. On that last, if you're really feeling at a loss, try honesty: “You know, I don’t really know that much about autism.” And then stop. Wait. Most parents will be more than happy to fill you in. Not because we love talking about autism. We love talking about our kids. Information and text from the Interactive Autism Network reproduced with permission of Kennedy Krieger Institute, Baltimore, MD. .
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