Friday, 21 June 2013

What IS Autism, and why do we differ so much?

I’ve been thinking a good deal lately about what exactly autism is, and why it is that, despite there being a whole range of things we have in common, we differ so much in how we express that autism. As the saying goes ‘if you’ve met one autistic, you’ve met one autistic.” But why is this so?

There are several obvious superficial reasons for our differences, including gender, age cohort, background, co-morbid conditions, and simply individual personalities. Yet it seems to me that none of these truly explain them. The other obvious difference is in our functioning levels – and here, I believe, we get somewhat closer to the crux of ‘what autism is’ – and yet miss it completely.

Let me explain this further. Through my lived experience of autism and several years of keen observation, reading, and listening to my autistic peers, I have come to the following conclusions :-

1) There is only ONE autism. That is, all the different labels or categories of autism, don’t really exist. There is only one condition, and you either have it or you don’t.

2) Autism is not a set of behaviours, but a qualitatively different neurological pattern. This pattern is inborn, immovable, and largely misunderstood. It means that the way we think, process, act, react and express our emotions, and how, where and what we focus on, is radically different to that of NTs.  

3) This different pattern is the one thing all autistics have in common, the ‘base line’ of our autism. The apparent differences between low and high functioning, are largely due to how well we are able to communicate with others. Because –

4) The core or fundamental autistic state is a non-verbal one, probably picture-thinking, reacting to the world viscerally, experiencing it as a wash of sensory feed, focussing on physical objects or our inner images/feelings, far more than on other people. This is where we all seem to start from, as young children. As we grow up, some of us are able to acquire verbal language, through which we become more aware of others, and start to learn concepts and skills. Even as adults, many autistics (including me) still think predominantly in images or surges of feeling, and have to ‘translate’ our thoughts into words to communicate with others. We can also ‘lose our words’ under stress. Nevertheless, it’s pretty obvious that it’s those autistics who have the most translating ability, ie are able to more easily acquire/hang on to/use oral communication, who are most likely to be labelled high-functioning or Aspergers rather than low-functioning or classic autistics. ‘Non-verbal’ equals ‘low-intelligence’, in most people’s eyes. Yet often when these autistics do finally find a way to communicate – eg, via computerised speech devices – they are frequently revealed to have a perfectly functioning intelligence, thank you. (And are often pissed off at those who think otherwise!)

So what, you might ask, about those kids who not only have no language, but lack any other sign of ‘normal’ development, eg aren’t toilet trained, can’t dress themselves, scream constantly, etc? My gut feeling is that again, this is largely due to the communication barrier. If you can’t understand what people are saying to you, how can you grasp what they want of you, in regard to (for example) using the toilet rather than filling your pants? If you don’t even realise that communication is possible, how do you express your pain, except by screaming? Even those of us at the high-functioning end of the spectrum, especially as young children, have had the experience of knowing something, but not realising it needed to be communicated to others, and even when we did realise it, of not having the words to do so.

I admit I am not a scientist or doctor, or researcher of any kind, and my theory might sound strange or even controversial to many. Yet there is some evidence to support it. Consider, for instance, the experiences of a friend of mine, whose child is one of those lower-functioning autistic children – nine years old and non-verbal, not toilet-trained, etc. A while back, he started a course of (highly modified) ABA therapy. He is now able to use a communication ‘book’ to get across his needs (and like many children, persistently requests candy for breakfast, even though he never gets it!), and now has his first echolalic word – “No!” What fascinated me though, was her comment shortly after the therapy started, that he “didn’t seem to realise before that he could communicate with others”, that this idea was a revelation to him. Also, more recently, she has said she feels his problem with understanding spoken language is due to that “when we speak to [him] he most likely has to translate this to pictures or to whatever way his brain interprets things. On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day… none of the message will make it through. It will be a garbled mess.”

Or consider the chapter in the Loud Hands anthology, by Amanda Baggs, where she talks of how the verbal abilities of autistics like herself are “rarely stable… [it’s like] climbing a cliff.. we climb up to able to talk or understand language, and the moment we get distracted we fall back down to where words don’t exist, and have to climb up again, if we can.”[1] She implies that the more ‘rational’ and ‘verbal’ autistics don’t experience this cliff, but I’m not so sure. I think we are very likely to fall down it when we’re exhausted, ill, under severe stress, close to meltdown or shutdown or sensory overload, or already in it. We might also let ourselves slide down it for a while when alone and relaxed, perhaps communing with nature, or simply engaged in our favourite activity, temporarily giving up the struggle to express ourselves in words, and just ‘being autistic’.

I have no idea why some can ‘translate’ or ‘climb the cliff’ well, and others can’t, what difference in our brains dictates this. It’s something that I believe needs far more research – only, as the ‘experts’ seem to be far more focussed on finding cures and/or discovering more ways in which they can ‘prove’ the autistic state is an inferior or pathological one, rather than on things that might actually help us, I’m not holding my breath that it will happen. I do however feel it’s a line of enquiry which might prove helpful for all autistics, but most especially the non-verbal, if someone did find out the reason.

[1] Baggs, Amanda, pg 233, ‘Untitled’, in Loud Hands: Autistic People Speaking, ed by Julia Bascom/The Autistic Self-Advocacy Network, 2012, The Autistic Press, Washington DC, USA.


  1. Penni Winter's blog: AStrangerinGodzone; What IS Autism, and why do we differ so much? Presents a very different take on the whole question of 'What is Autism'.

    And that in itself can be taken two ways; firstly, what are the combinations of the individual symptoms that together give us a definition of Autism? And secondly, what is the mechanism that lies at the root of all the different presentations of the condition?

    The first of these two questions is what the DSM 5 addresses, with a somewhat mixed level of success, trying to define Autism by the affect it has upon the average subject. The problem with that approach is, of course, that the symptoms vary so widely by type and by severity that we get the well known aphorism that ‘if you’ve met one autistic, you’ve met one autistic.”

    It is the second question that Penny Winter addresses so directly, with a really forceful and penetrating vision of what is happening.

    I have been having thoughts along much the same lines and I believe that they support very closely what Penny has concluded, possibly adding a little clearer definition in some points.
    Let me demonstrate:

    1) - Autism has one cause that results in the whole Spectrum of expressions of the Condition

    2) - Autism is the result of the way that the brain develops in the developing fetus and after. The proportions of the cell types, grey and white matter, and the connections between the neurons and between areas of the growing brain are particular to Autistic individuals. It is this difference in the growth patterns in the development of the Autistic brain, that gives us such a range of symptoms; for the effect of the different growth pattern establishes a pattern of changes yet the individual expression of those changes can be as chalk and cheese.

    3) - This different pattern of brain development; i.e. this different way our brains work, is the one thing that all Autistics have in common. The differences in the way that it is expressed gives rise to the apparent differences between low and high functioning Autistics and that is, as Penny concludes, largely due to communication abilities.

    4) - It may be far more fundamental than that. For every animal, however simple must build an encyclopedia of its world, its surroundings as it is aware of them. It builds a model of how things work, at its level.
    And the same must be true of Autistic individuals too. For Asperger's or the high functioning this will include language and the perception of others; while for the low functioning these concepts don't even exist. If the developing Autistic does not make the connections between sound and speech – communication, or even that the people it is aware of are substantially the same category as itself, how can communication even be possible.
    We each of us have our own unique encyclopedia and map of our world that enables us to relate to it. It is unique to each of us as it is built from experience by interpretation and we each have our own history of experience and learning. As we learn more we redraw our map and revise our knowledge base.
    We can see this happen most graphically when non-verbal Autistics learn to communicate by sign, or by computer and a whole new world opens up to them.

  2. John, thank you for your comments, i think we are coming at the same conclusions, from slightly different angles! I am no scientist, as i've said (i really, really need to do some research on this, i see), so didn't talk about this in my post, but i do agree that SOMETHING different is happening in our brains. This is something i do feel needs much more attention from scientists.

    Also, your last few paras... In the article i quote from, by Amanda Baggs, she talks of how non-verbal autistics can be not just 'pre-verbal', but what she calls 'pre-conceptual'. I believe there has been some research, or maybe it's only a theory, that we need language to form concepts. If you haven't read 'Loud Hands' already, i suggest you get a hold of a copy and read the whole article, tell me what you think.

  3. I just found your blog and I am quite happy I did so!

    One of my burning interests is human diversity and its expression. Communication is a major part of the autism spectrum. It is all about how we connect, to others and to our own bodies.

    I have great difficulties with anxiety, but the methods that help others do not help me. An example--progressive relaxation makes me more anxious. Somehow, my mental map is not soothed by tensing and relaxing muscles. I find myself scrambling to know which muscle is where and fretting over when to tense and relax. Distraction, however, works wonders for me--art, music, puzzles drain away anxiety.

    Understanding and accepting that people are different is one of the most important lessons in life.

    Thank you for an interesting and thought provoking read!

    Lori D.

    1. Hi Lori and Penni,

      I have found it interesting that exercise decreases my stress. I feel like I store my stress physically in my shoulders and neck. So when I exercise regularly, I release that tension and actually respond better in stressful situations. My husband agrees about not reacting (negatively) as much and doesn't complain about the results of the exercising, either. ;)

      Great blog, Penni!