Tuesday, 1 October 2013

The Autism Label

Lately, I’ve seen discussion of the autism ‘label’ happen in quite a few places. It seems many are still confused over the difference between a ‘label’ and an ‘identity’, and unhappy about “being labelled”. I’ve written on labels and identities before (here and here), but I feel the time is right to say just a bit more about this issue.

Put simply, a ‘label’ is what others put on something or someone. It can be neutral, as in canned foods -“Baked Beans” “Onion Soup”, medical/diagnostic - “Arthritis”, “Aspergers Syndrome”, or value-laden, which can be positive or negative – “expert”, “loser”, etc.

An ‘identity’, on the other hand, is what we form for ourselves. We may take a ‘label’ and form an identity around it, use it to anchor our sense of self, or it may come from things that arise out of us, such as being ‘artistic’, ‘a good baker’, or ‘reliable’.
The impression I get is that when people resist/reject the ‘label’ of autism, it’s either:-
(a) The negative public image of autism/aspergers, means they fear becoming ‘pigeonholed’, viewed/judged by others as being ‘limited’, when in fact they know they are capable of many things which autistics are ‘not supposed’ to be able to do; or -
(b) They feel that their autism/aspergers is only part of who they are, as a person, and fear being viewed only through the lens of autism, as though explains ‘everything’ about them.

The answer to the first is of course to get ourselves out there, openly autistic, doing things and demolishing the stereotypical ideas about what we’re capable of, just like many other groups seeking liberation have had to. (I’m old enough to remember when being a woman or black meant you were considered limited in both intelligence and capabilities.) The second is a bit harder to counteract, as forming our identities is such a very personal thing.

My own identity revolves around three threads of my Self – being aspie, being creative, and being spiritual. Other threads – such as my gender, sexuality, nationality, family background, upbringing, interests, experiences and education - have also gone into weaving ‘the me that is me’, yet those three threads are ‘core’. If you know and understand them, you know and understand me. And while I’ve long known that my creativity and spirituality are so intertwined they’re effectively two aspects of the same thing, in recent years I’ve realised just how closely my aspieness is also intertwined with them. It shapes my creativity profoundly – in the words and images I use, in the way my brain and hands shape them, in the rhythms of how and when I manifest my creativity, but most especially in how I’ve never in my life been able to produce a ‘mainstream’ piece of art. My writings and paintings have never been ‘like what others produce’, and now I know why. Similarly, I now see that my spirituality is also shaped by my AS, in that it’s totally individualistic, independent of ‘established’ thought and religions, and very much about me and my relationship with the Creator, rather than conforming to the pressure of social norms, ‘wanting to belong’ somewhere, or fearing the ‘wrath of God’ for my ‘sins’ – or, for that matter, about feeling any need to ‘convert’ others to my way of thinking.

In short, I find it difficult (and unnecessary) to separate out which bit of my core identity is aspie, which bit creative, and which is spiritual. It’s all one to me. What I do know is, that denying or diminishing any one of these threads, diminishes me as a person, and denies an essential part of who I am. After all, AS has a pretty comprehensive affect on our cognitive styles, our emotional reactions and expressions, our styles of and capabilities for social interaction, even our physical and sensory reactions, so how likely is it that it’s not having some effect on how we express our individuality? To put it another way, identifying as aspie/autie doesn’t explain everything about you, but it’s likely that it does colour how you express that ‘everything’.

I also want to point out that no-one usually resists ‘labels’ that are positive or neutral – it’s only the labels that are viewed negatively by society at large, that we tend to resist. Think of the issue of using ‘person-first language’ to describe autistic people, for instance. As many autistics have asked, why would anyone want to avoid ‘labelling’ a person as autistic, if being autistic wasn’t considered a negative thing by most? Yet reframing autism as a ‘difference’, a condition that presents with both challenges and merits, could go a long way to demolishing any need to avoid ‘labelling’.

I ended my first post on this subject with the following words. Even two years on, I really can’t think of any better way to put it. “No minority group has ever changed the public image of their identity or ‘label’ by rejecting it, hiding away, or claiming to be ‘free spirits’. It’s time to change, to love our autism, to embrace a positive autistic identity. For all our sakes.”


  1. Thank you for this. My son is 6 and PDD-NOS. He's mainstreamed and doing well academically, and pretty well socially. The level of comfort and self confidence you have is what I want for my son. I have a nephew who is 30, and not so comfortable with his autism. It has been a challenge for him for most of his life, through an unhelpful school district, and on into adulthood. He's getting help to become more independent, and starting to find his own voice, but he doesn't quite accept the autism as a part of who he is. It makes it hard to deal for him because he sees only the negative and denies it, and can't see how his autism might positively shape his world/perceptions, etc.

    I'm going to reblog this on my blog, as it is so well and clearly written, and I want to have it easily accessible as my son grows to learn of and work with his autism. Thank you again!

    1. Glad you liked it, pk! And glad that you are determined to see your son grow up with a strong self-image as autistic. But sorry that your nephew is not so lucky, alas. I can only suggest you nudge him in the way of the many fine forums and facebook pages for those on the spectrum, where he might find 'like minds', and begin to accept himself, through such companionship, as i did!

      I am happy for you to reblog this post, btw, so long as you include a link back to the original post. :)

  2. Done - it's there now. I am nudging. His mom knows it as well and is glad. I'm trying to reassure nephew that things are different than they were when he was a kid, that there are a lot of supports out there, and that he's not alone. Hopefully he'll hear it.

  3. "you can't humiliate someone who feels pride"
    "you can't oppress someone who is not afraid anymore" - Eleanor Longden