But For Autism

CHOOSE DETERMINISM dice

Image by alyceobvious via Flickr

I remember interesting conversations arising in my law and philosophy classes, over the limits and problems of causation. In law this problem often arose under the discussion of the “but for” test; in philosophy it often occurred in the context of discussing determinism. I see the same types of discussions and issues arise in autism discussions, particularly in regards to genius, and other traits associated with – but arguably not caused by – autism. Would an autistic person had been a genius without the autism (or would their genius have been much more profound without the autism in the way)? Are sensory / gut / physiological (etc) issues caused by and part of the autism, or a sign of some other comorbid condition (or perhaps a sign of a hitherto un(der)recognised variety of autism)? To a significant extent of course these are medical questions, but they go beyond that too; to questions about attitudes, definitions, and individual identity.

These issues become so heated and so messy for autism, since autism impacts so widely and deeply on the mind (and often body) of an autistic person from such a young age, that it can be nigh-impossible to imagine the child (or adult) without the autism. I have a lot of trouble imagining what my son would be like if he’d never had autism; it so invades / informs his thoughts, reactions and interactions that it’s like an inseparable part of his identity.

I can ask whether he’d have been this smart (or smarter) but for the autism. I can wonder whether his personality would have been this wonderful (or worse or better) without its impact. Asking those questions is easy, finding meaningful answers that aren’t packed to the rim with other people’s agendas and ulterior motives, is not. (Agendas such as shining the spot-light on a particular “brand” or attitude towards autism, to encourage research and services in one direction rather than the other; to fight for a cure, or to fight for the end of the search for a cure.)

I view the upcoming changes to the DSM, as moving in the right direction, because they tidy up the current mess as to what is and is not central to autism (such as recognising that sensory issues are common and directly related to autism, and changing the criteria in such a way that helps separate out those who have Aspergers-qua-autism, from those who are (simply) gifted). The task of deciding what is central and related, and what is perhaps incidental and caused by something separate from autism, is a controversial one to say the least (the clarifications around the intellectual developmental disorders in the DSM-5 as they relate to autism, have definitely attracted this sort of controversy.) Under either DSMs though, my son nevertheless has autism, and no other comorbid conditions (that I am yet aware of, of course).

It would be nice if I could say I wouldn’t change a thing about my son. But I would love his communication to be stronger and come faster and more naturally. I would love it if his anxieties were not so many and varied and debilitating. If I could change such things – somehow – would it mean changing the rest of him; including the parts that I adore about him so much? If the magic pill was made to remove his autism, would I want him to take it? Personally, yes, because autism seems to have impacted far more negatively than positively on his life, and that is not a surprising statement surely, considering the diagnostic criteria for autism. And so we go in circles again; whoever has the “power” to define (and redefine) “autism” – what is and what is not truly a consequence of, or is part and parcel with autism – has obviously immense impact on our (my) attitudes towards whether it is a gift, a curse, or something in between (or indeed, both a gift and a curse).

I love my son, completely. But I do not love his autism. If “not having autism” meant he didn’t have all those problems listed off in the diagnostic criteria, then yes I want it gone; it would be odd for me to say otherwise. I don’t think I’ll ever see the day when that offer will be made to me, and I know that preferring he wasn’t autistic doesn’t make me love him any less (the love I have for him is beyond words, some days it simply overwhelms me). So though it crosses my mind at times, I don’t dwell on it; on imagining what my son would have been like, but for his autism. This is who he is, and whether it was who he was “meant” to be, or whether I could make him any different with a magic pill, are questions for round the philosophy table (or a bloggers’ table if you prefer); in my everyday life – in my son’s everyday life – we just do the best we can, and work towards him becoming the amazing man he is going to one day be.

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4 Responses to But For Autism

  1. Jim W says:

    I pretty much agree. I don’t think wanting stronger communication skills or less anxiety means that I’m rejecting who my daughter is. I think your son, like my daughter, is a work in progress and we, as parents try to do the best we can to make them the best they can be. . . whatever that “best” might look like. It’s really not notably different from wanting my older, neurotypical daughter to pay better attention in class, or not burst into tears if she doesn’t get to pitch at her softball game. We parent these things because we see areas to improve. In the case of my younger daughter, it’s just different or more extreme challenges. In general though, the “but for” is something that I think you have to forget about when you’re talking about your children. . . regardless of autism/whatever.

    Good to see a new blog from you, btw, I was wondering where you went.

    • Thanks Jim. I’ve been tied up in work (which has now finished for the semester), and in planning my son’s 6th birthday party. The party’s next weekend though so I’ll have more time soon for the blogging, which I miss (and nice to know someone noticed I was missing too!)

  2. dixieredmond says:

    Interesting post. I want my son to be who he is with less worry and anxiety. I want him to enjoy life more. I want him to be safe. I don’t know that we can separate these things from autism, though. This makes me think of something I want to write about.

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