Thursday, November 29, 2007

Just A Small First (But a Big One for Me)

We used to have a big white cat. Every day when I got home from work he would come to the door to greet me and 'stripe' me (as big, white, shedding cats are prone to do as they rub past your leg). Eventually he got old and difficult to care for, and a few months after the Bear was born, Momma Bear said it was time for him to go. I protested, and amongst other things used this daily greeting as an example (one among many) of something that I would really miss. Momma Bear promised that soon enough the Bear would be greeting me at the door, and that this would also make my day. So off went the cat - to the outlaws, where he lived quite happily for another year or so - and I waited for the day when the Bear would start coming to the door to greet me.

But the Bear, despite being very affectionate with me at other times, never came. She will often give a big smile, and sometimes get up to greet me after IBI, where she's waiting on the couch by the door when I come in. This alone is special - the couch there is a big comfy magnet for her, and she doesn't willingly jump off of it for just anyone - but she never did this at home.

Yesterday I got home from work as usual. Normally I go in, and after getting stuff put away and settled I go and find the Bear and spend some time with her. Not yesterday though.

After bringing in the groceries I started taking my boots off, and Momma Bear called out, as she sometimes does, "[Bear], Daddy's home! Daddy's at the front door." I heard the Bear bouncing on the mini-trampoline (she loves to bounce on it on her butt) in the living room (yes, living room - where do you keep your mini-trampoline?), but then the noise stopped, and I heard the pitter patter of tiny footsteps down the hall. The Bear peeked round the corner, looked at me, gave me a big smile and quickly came over to greet me. I went down on one knee, and she came over and sat on my lap and leaned into me (a 'Bear' hug). This was the first time that she had ever come to greet me at the front door.

I told her how nice it was that she came to see me, thanked her, told her I loved her and missed her all afternoon (I do the shuttle between IBI and Junior Kindergarten, so I see her at lunch), and picked her up for a big hug and a spin. Daddy is a big amusement park full of assorted rides and spins, and the Bear loves all of them.

Hopefully she will come to the door to greet me again soon. But regardless, this first was special, and easily the best greeting I've ever had. I still sometimes miss the cat, but I now have the prospect of other special welcomes to look forward to.

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.

Call off the Search Parties

Just a quick post to let anyone know who is wondering what happened to Ian that he and his family have been found safe and sound, somewhere in Ontario. Unfortunately Ian has been quite busy with various activities, preoccupations, duties, chores, perseverations, etc. over the past ten weeks (has it really been that long?), but promises to do his best to continue to maintain this blog as a going concern. This is not an abandoned blog (Honestly!). Several posts are currently percolating, but finding the time to complete them is an ongoing issue. Ian may even try at some point to post a picture of the Bear dressed as a giraffe for Halloween (it is much cuter than it sounds) if it is not too late to do so.

For those who were not wondering about Ian’s extended absence, why are you still here reading this?