What is Autism?
Got it by Donna Williams
Ultimately ‘autistic’ is an adjective. This adjective is used to describe the developmental and behavioral impact of a variety of often experientially overwhelming co-occurring conditions (‘fruit salad’) in whatever genetic or environmentally acquired combination these come in.
This impact generally dramatically alters the course of a child’s global social, emotional, communication, sensory perceptual and development, necessitating dependency or often difficult to comprehend adaptations which may be accommodated or not at different levels by the family, school, services, community.
Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net
http://www.aspinauts.com
http://www.myspace.com/nobodynowherethefilm
Hi Donna,
Good answer.
When I was doing literature research about the spectrum for my thesis (which i never wrote but collected data etc for) I did come to the conclusion that Autism was social construct…that this thing called ‘autism’ didn’t seem to exist.
Yet, there are many spaces where a simple definition is necessary eg. I’m a on government advisory group here where we provide feedback on a range of things such as services for people on the spectrum etc to individuals in ministry’s whom may never have heard of ASD…thus in those circumstances we tend to use the simply definitions…and to me this in itself is creating a particular constructed meaning for a specific purpose – something I think is perfectly appropriate for the context.
But in other contexts social constructs of autism do indeed seem to become problematic…as you at times discuss. To me it is a bit of a tricky issue at times…sometimes it seems quite positive to utilize constructed definitions (as above)…and I have noticed that for many individuals exploring Aspie as an element of their identity can be positive eg. in forming support groups for people newly diagnosed many can find it positive to explore the shared experiences of difference they have encountered in their lives.
At other times the constructed identity of being Autistic or Aspergers can bring with it some negative consequences…one example I can think of being with a man I encountered who after being diagnosed with Aspergers now uses it as an excuse for some very offensive behaviour eg. I say anything I like because I can’t help it…I’ve got Aspergers.
Do you too find that there are times when simple constructed definitions are useful? And have you found in your work that sometimes it can be positive for individuals to explore Aspie to some extent as an element of their identity? And how do you deal with those individuals who start heading into the negative over constructed identity of Aspie??
what a wonderfully sensible question!
Yes, identity is an important part of a human journey. But like any part of development it can become imbalanced, pathological, narrowed, excessive, etc. For example if a child is learning to walk do we sit them on a busy road? No, we ensure they are in a healthy space with which to develop this new found ability. And awareness of one’s autism means understanding its particular nature for EACH person, which means comparing notes, sure, but not slavishly sucking up to stereotypes, not being afraid to be unlike others with the diagnosis, not reducing all one is to the diagnosis, not ignoring and placing secondary all that is not directly attributable to the diagnosis. And whilst its likely positive to discover relateability, why take that into some BPD/Borg style mergence with all with the same label? Why use it as an excuse for avoiding work, avoiding socialising with the broader range of society, avoiding working on poor impulse control or indulge in reverse prejudice as justification for raising oneself up the heirachy and lowering, degrading, mocking or harming others in the process? Why use new found relateability as a means of over indulging certain personality traits to the point of personality disorder? I’ve even known one adult so desperate for a diagnosis she drank heaps of coffee to sleep deprive herself so she’d be agitated, distracted, disoriented for the assessment. What crap is that? I know others who quit speaking once they realised they related to autism and now only speak via a computer. Sure, that’s a choice, maybe they feel more comfortable that way, but that’s a cultural choice, an identification, that’s not the same as someone with severe communication disorder who would love to use whatever speech they had if they could. And there’s place for both people, sure, but don’t ever pass off the apple as the pear, the apple is an apple, the pear is a pear. And why if you realise you fit a certain condition does this have to then go the absolute extreme of you promoting yourself to the role of militant, even aggressive civil rights activist and settle into your self made niche in a war? What happened to the rest of your life? The rest of YOU? So what would be useful is that those identifying with the spectrum or newly diagnosed
should be offered information about how to healthily navigate the identity side of their journey? People should be informed about what’s out there, the pressures to conform to one size fits all politics, the cyber bullying WITHIN the autism world, the hierarchies, the grandiosity, the separatism, the glorifications, the expected loyalties and one’s right to choose one’s own. We need to face up to the ill health that can happen to those without professional support in the identification process, especially in this fiercely online era.
Wow…yes…you’ve seen a lot clearly! I am seeing similar things in the Aspie world and have some concerns about the many extremes emerging…and certainly I agree that there needs to be some honesty about all sorts of things in the Autism world…
Politics….argghh…the parents who are obsessed with curing the kids and over zealous therapy…the other extreme of parents who don’t bother trying to help their kids at all….the aspies who are equally zealous towards the over zealous parents…the aspies that become nothing but autistic….the arguments, conflicts and ideological struggles within the autism advocacy world…those that consider we shouldn’t discuss topics like ‘aspergers people who rant at others with such a lack of empathy that they hurt people = bullying’…the shit one is likely to cop for suggesting that sometimes AS people are quite simply, screwed up and need help…and on and on it goes…
But, on the other hand…there’s the difficulty of discussing AS as a social construct in certain contexts…because sometimes psych professionals take this notion and decide this means that people don’t actually experience the things they experience and it’s all a load of rubbish…
I’m interested to watch the directions many things take in the next few years…
I certainly agree that there is a need for post diagnosis support etc…
As usual Paula, you appear incurably SANE 😉
why thank you…you do too. 🙂
I like that idea that autism is a social construct. I wish more people understood that — that is that they really saw it that way (as distinct from understanding the idea). It’s like the idea of platonian forms. People think autism has some reality beyond our idea of it. But it doesn’t. The autistic traits that people have are real. The similarities between different people we label as autistic are real. (Paula addresses above those who go too far the other way and deny those realities.) But grouping particular similarities together and calling them autism, that doesn’t have an objective reality. If it was one person doing it, it would simply be something existing in that person’s mind. When many people share the ideas, the labels, it’s, as you say, a social construct. It’s a useful one. But no one should let autism define them, or define a friend or loved one.
When someone accomplished and known for their label declares ‘I am my autism’ etc, then star struck followers wishing for and identifying with such success tend to go Baa-aa and repeat the line like a mantra. Saying “I identify with the social construct of autism” just isn’t as ‘sexy’… it doesn’t give anyone a leader… an icon… someone to follow or emulate. It leaves them having to be hopelessly individual 😉 People let autism define them or define their loved one by their autism ie, presenting their child as “THE face of autism”, because that does something for them in the ego department… it appeals to something in their own personality related agenda… if you like, it ‘turns them on’. My autism doesn’t turn me on or turn me off, it just is. It’s not the whole of me, my autism didn’t make me an artist or give me curly hair, it didn’t make me like tinsel or like watching Monkey. I could choose to attribute every breath I take to it, make an icon of it, build my identity and pride on it, build my social world around it. But I don’t. I live with it and all the other things that are parts of me, but are not, in themselves the sum total of ME.