Thursday, November 22, 2007

‘Autistic’ vs. ‘Has Autism’

One of the many points of contention in the world of those touched by autism is the way in which one who has a diagnosis is labeled: ‘autistic’ or ‘has autism’. While I don’t think about this too much, I was watching a movie on Sunday in which someone referred to a child as ‘autistic’, and the parent deliberately corrected the person with the statement ‘has autism’. That started me thinking about the divide.

I tend to use the term ‘autistic’, in part because it is a term that appears to be favoured by those with the diagnosis who have an opinion on the subject – e.g. see Jim Sinclair here. But I’m not particularly fussed by the use of ‘has autism’, and (if anyone cares) I find this description to be not offensive (unless one wants to be offended), but merely incomplete in its descriptiveness.

Not everyone feels this way. A researcher who replied by e-mail to my ‘ASD as a Developmental Disorder - A Suggested Neurological Underpinning’ post (no, I will not say who it was, and I quote this strictly to show another POV, not to challenge the researcher) wrote the following:

"A minor point, but I have always been told that it is impolite to use the word 'autistics' as a noun. I tend to write 'people with autism' or 'autistic children' instead. I realize opinions differ widely on this type of 'political correctness', but many journals now ban the term 'autistics' and I find it grates when I read it."

While I don’t agree (and I wrote back to explain my use of the term and to forward a link to Jim Sinclair’s above-mentioned post), I think I do understand why people might feel this way. Not to link the person above to Jenny McCarthy, but I also recall hearing the other parent who did the road show with her clearly make the distinction between the two terms, favouring ‘has’.

The dividing line between the two terms of reference – the difference between ‘is’ and ‘has’ - seems to be in related in part to one’s view of ‘cause’ and ‘cure’. If one believes that autism is a disorder/disease, and therefore as a negative, then it is presumably something that happens to a person rather than being part of them. As such, it would not define the person (i.e. ‘is’), but is instead an affliction that someone ‘has’, and which may therefore be potentially subject to elimination (i.e. the person ‘does not have’ autism after being cured). After autism has been removed, the person presumably still ‘is’, even though they ‘no longer have’.

A related point is that some use ‘has’ because they want to convey that the autistic person is more than just autistic, such that autism alone does not define them, but is only part of the story. Also, if autism is seen as a negative, then that is a further reason to distance the person from the disorder. ‘Has’ suggests that this negative is not a core part of the person but an add-on that does not define them as much as modify them. It enables the speaker to distance the person from the negative, in that the negative does not define them but instead moves them off course from the person that they truly are (or would be if they were not autistic). I would suggest that many who do not believe in the current possibility of a cure still see autism as such and use the ‘has’ descriptor.

If, conversely, one believes that autism is an inseparable part of a person, it is therefore an ‘is’, and part of their ‘being’, rather than a ‘has’. Many who hold this view are anti-cure, suggesting that a cure would change who the autistic person ‘is’, to the point that the original person would no longer exist. Further, I’d suggest that while those who see autism as an ‘is’ would agree that it brings definite challenges, they would not see it as a negative as much as an ‘other’, a natural variation that has its positives and negatives. As such, one of the fault lines in autism runs along the ‘is’/’has’ divide, not just between cure vs. anti-cure, but also between natural variation and a disorder/disease model.

From my perspective, I’m probably on the wrong side of line. I see autism as a disorder with potentially many causes, but one that occurs in those who have a pre-existing and underlying natural variation that makes them vulnerable to autistic disabilities. My issue as such is not with autism per se, but with autistic disabilities. The distinction is too complex an argument to present here (it is embedded in a fairly complex forty-plus page post here), but in a highly summarized form I would suggest that autism is the result of a different developmental path that is strongly impacted by underlying neurological issues manifested in the anterior cingulate cortex and especially in the anterior insula (AI). There is considerable evidence about the role of the anterior insula in general, and it is in this area of the brain that I would suggest the major autistic sensory integration issues are derived. If this hypothesis is correct, then ‘curing’ autistic AI issues would significantly increase the SI capabilities of autistics and open additional developmental pathways, but this would not immediately change who they are. Instead, it would open other potential future paths that would be equally as authentic and true to the person as their existing developmental pathways, but without compromising existing development. As such, the resulting new capabilities would be additive rather than displacing or superseding the existing set.

Despite the above, I still feel that the ‘is’ term is appropriate. To my mind autism really is both profound and pervasive in its role in the lives of those who qualify for a diagnosis, regardless of whether one ultimately believes in the possibility of a cure. I see the term as being explanatory rather than negative or pejorative, and as such it is nothing to distance my daughter from. If a ‘cure’ is found (from the above, my definition of ‘cure’ – ‘the addition of neurologically-based capabilities’, rather than ‘becoming NT’ - is probably different than that of most people), I would then say that my daughter ‘was autistic’ if as a result the diagnosis no longer applied.

Having said that, I do not feel that using ‘autistic’ indicates or suggests that autism is the sum total of the person. The Bear, for example, has a ‘severe’ diagnosis, and yet does not share several of the characteristics that many expect of autistics (as an example, she has no issues with spontaneity or changes in routine – except perhaps when there is not enough of either). Other autistic children I know also each have characteristics that don’t conform to stereotypical expectations. They each differ widely enough that one of my current expressions is "If you’ve met one autistic, you’ve met one autistic." (as opposed to “you’ve met them all”). In the Bear’s case, autism no more totally defines her or sums up her existence than ‘Canadian’ or ‘female’ do, yet she ‘is’ both of these too.

I find it interesting that people who insist on ‘has autism’ would probably use the terms ‘paraplegic’ and ’quadriplegic’ without a second thought, rather than using ‘has paraplegia’ or ‘has quadriplegia’. To be clear, I am not comparing autism with either of those conditions in any way other than their potentially profound and pervasive impact on those so identified, and I am not suggesting that any of the three terms limits or completely defines the people so identified. Instead, the comparison is intended to highlight the discrepancy in the terminology used in each case. Why would one term be unacceptable while the others are not?

I am comfortable with the term ‘autistic’. If others are not, I believe that I understand why, but I will politely disagree. They are free to do the same.

9 comments:

farmwifetwo said...

I prefer the "has". And a lot of that has to do with the mildness of the eldest's "autism"... trying to find the words.

B/c I see them as individuals first and a dx second. No other "condition" has ever labelled someone as their Dx. And truly, by giving that label, outsiders see the illness first and not the person.

Which I think was one of the problems I was having with my younger son's Gr 1 teacher. Those stereotypes can be a PIT.....

Not trying to change your opinion... just giving mine :)

S.

Ian Parker said...

Hi Farmwifetwo,

No worries about giving your opinion. It is always welcome. :-)

And if the Bear's diagnosis were not 'severe' I might feel more the same way.

I do agree completely with your view of seeing people as individuals first. "If you've met one autistic, you've met one autistic."

Although I use the 'is' form, it no more sums her up or explains her than 'female' does (another 'is'). Unfortunately though I think that many people when they hear 'autism' will quickly jump to stereotypes - which are often incorrect, or at least not always applicable - regardless of whether the 'is' or 'has' form is used.

When people meet my daughter I don't usually say anything about autism until and unless it is necessary. Not to hide it, but because I don't feel any obligation to 'explain' her before she has made her own 'introduction' on her own terms. And for those brief encounters with strangers where some explanation is necessary, I usually go with my version of the 'short answer' - "She doesn't talk yet" - and move on.

But when a more robust explanation is called for and the opportunity exists I will use 'autistic', and will take the opportunity to challenge the negative stereotypes that go with the diagnosis - as the Bear does through her actions, deportment, and the usually very happy and cheerful expression on her face. At those times I think it is important to speak out, to to encourage tolerance and acceptance through challenging preconceptions and encouraging understanding. To my mind this is much more important than 'is' versus 'has', which is why I'm not really worried what term one uses as long as the net effect is to encourage understanding and acceptance.

kyra said...

well said! i actually use both terms, at times saying fluffy has autism and others saying he's autistic. now that john e robison's come along and given us the noun form of fluffy's diagnosis, i say he's aspergian. voila!

by the way, i have the same definition of what losing the diagnosis would mean and i've always preferred the term remediation over cure. it implies learning rather than excising, a kind of expanding rather than getting rid of. i've had disagreements over that but i still stand by the difference.

glad you're back! my best to the bear.

farmwifetwo said...

You're talking to one of those people who has no trouble looking someone in the eye and saying "my son(s)have autism". I have no use for those who carry cards and cannot speak up for themselves. I feel that by not speaking up for yourself and your children, you appear to be embarrassed or ashamed of the dx.

I also have been at this about as long as you've had the "Bear". Once upon a time I too used the word "autistic"... I'd like to tell you that learning to live with it more than having it control your world (never ending appts, behaviour, toiletting - youngest still isn't :(, therapies etc) came instantly... it took a VERY long time. Actually, until I got rid of IBI summer 2006.

I also look at it this way. The last dev ped we saw told me that I probably have mild aspergers... I REFUSE to label myself as an Aspie - what's that??? But then again one of my major pet peeves is that Canadian LOVE labels. They are always "something" then Canadian or "dx" and their name.

My eldest (8yr old) doesn't even know he has autism. He's just a normal kid, in a normal class (3/4 split), with normal curriculum, doing AMAZING (Math is his best class - and gets it in a fingersnap. A couple of nights ago he informed us that Jigsaw (Jigsaw Jones the story books) was a compound word. Love my tutor)... and 1hr every 6 days he sees the LST (reading comprehension - sight word volcab is Gr 12 level, comprehension is at the beginning of Gr 3 - he's hyperlexic). Which to him is just the way it is and besides, he likes the attention.

So, no labels here... and unless we're discussing IEP's or the annual trip to the Ped... you'll probably never hear the word mentioned in our house.

S.

Ian Parker said...

Hi Kyra,

Thanks for coming by. I quite like the term remediation too. It is a good description of how we approach the Bear's development. It is also a more positive way of saying what we are trying to do, rather than the more negative "We're not trying to ...". Thanks.

Hi Farmwifetwo,

I get the impression (not that my ToM works particularly well) that you think we're disagreeing far more than we are?

While we might not agree on 'is' vs. 'has' (although I think we agree to disagree), I'm trying to make the point that this 'is' does not sum up or limit the Bear, any more than any other 'is' does. The Bear is still the Bear first, and that is the only 'is' that completely defines her. Viewing 'is' as being incomplete and therefore not limiting is probably one of the reasons that I'm comfortable using the word. My impression is that you use 'has' for the same reason, prefering that form because the diagnosis does not sum up or limit your sons. We both agree that regardless of the term used, our children are far more than their diagnoses.

I'd also agree with you on learning to live with autism rather than having it control one's world, although we're not there yet. The biggest reason for this is the Bear's BM issues, followed by other SI issues, and trying to find the best way to teach her/enable her to learn. I'm under no illusion that mastering these issues will make her 'NT', but they will make autism easier to live with rather than controlling us.

I also agree with you regarding use of labels. As with your eldest, I'm not sure whether the Bear knows she is autistic, or if she does, that the term has any meaning for her. As above, I usually don't mention autism unless necessary, not to hide it but because I feel no obligation to 'explain her'. I certainly do not introduce the Bear as "This is my autistic daughter 'Bear'", and would not refer to anyone else individually in this manner either. I lead with 'autistic' when discussing autism in general, not when refering to any individual, and would use 'is autistic' descriptively for individuals if and when appropriate.

For quick encounters with strangers I use the 'short answer' (I got this term from you), but I will take the opportunity to discuss the diagnosis as required or opportune - in what I consider to be in the best interests of the Bear - while challenging negative stereotypes and encouraging acceptance. I'm not sure that we differ in this either.

As above, your opinion is always welcome, and FWIW I think we agree on quite a bit - no disrespect to you is intended by this association. ;-)

I'm glad to hear that your eldest is doing well, and hope that your youngest is doing well too.

farmwifetwo said...

I was just trying to extend my explanation and I completely get your POV... we're not arguing :)

My youngest is doing very well. Thanks for asking.

http://farmwifetwo.blogspot.com/2007/11/i-cant-i-wont.html

And when you figure out the toiletting part... tell me :)

S.

Ian Parker said...

Hi Farmwifetwo,

See, toldja I wasn't particularly good at ToM (more accurately, at mentalizing). ;-)

Ditto on the toileting.

mumkeepingsane said...

I use both. Recently I've starting using "is" more simply because of the adult autistics who have shown preference for this.

Also, I find I don't mention it much at all anymore in our general comings and goings. More and more I'm expecting people to simply accept Patrick for who he is. I use the label sometimes to gracefully get out of difficult situations. Of if someone is really interested and wants to know about Patrick in a more in depth way.

Ian Parker said...

Hi Mumkeepingsane,

Thanks for stopping by.

"More and more I'm expecting people to simply accept Patrick for who he is.

Agreed.