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I was reading something recently that aimed to explain the autistic spectrum to parents of children who have just received a diagnosis. Once I finished shouting at the leaflet, I decided to reflect on the issues within it that angered me so much.
What I realised was that I felt dehumanised and others by the language used within the leaflet. Among other things the leaflet suggested that people with Aspergers could ‘enjoy human contact’. Not contact with other humans or interactions with others, but human contact. I, along with all the other aspies I discussed this with we’re both offended and angry. We felt that this phrase suggested we were other than human, not quite as valid as humans without Aspergers. Interestingly for us, non-autistics who read the same section did not see anything wrong with this. This made me just as angry, and was a key part of my reflective and analytical (Aspie-style) processing.
I have worked with students with a variety of disabilities for many years and had some conversations with these students that have impacted and refined my thinking around society and disability. A young man with the ability to move one finger, talk, educate me about his religion and make me and our class laugh non-stop once told me that he was not disabled at all, but society disabled him, for example by not providing access to buildings. A young lady conveyed that she felt alienated from the community, left out on purpose, in fact made to feel other than everyone else. This notion of othering is a common one in academia, but the feeling of being othered is sadly even more commonplace. When I start a new job and no-one greets me or invites me to sit with them at morning tea, I feel left out and alienated. When these same people tell jokes or make disparaging comments about autistics, I feel different to them, othered. The language in this leaflet made me feel othered from the entire human race (of the non-autistic kind). People who are not othered, who are the ‘norm’ often do not see what they are doing, because the have never experienced it. Some of them suggest that othering does not exist, and at what that ‘group’ are asking for is the use of politically correct language, which is a waste of time and energy, as it is better to just call a spade a spade. The irony of applying this reposte to autistics is that we as a whole do call a spade a spade, so we interpret what others say a literal. Thus we truly feel that this leaflet is saying that we are not human. Could you imagine the hurt of growing up with this idea?
Sadly many people already have done, colonisation relied on the idea that the original inhabitants were less than human. Historically, those with physical or cognitive disabilities were viewed as less than human and treated appallingly. Some people in the disability movement would argue that their lived experience suggests that this is still the case.
I am endlessly fascinated by the idea that many professors, computer geniuses, mathematicians, teachers and physicists are aspies and yet Aspergers is viewed as a disability. Society says we are other than the norm, but chooses not to use the word difference. The autistic spectrum is a disorder according to the bio-medical model. I think that some aspects of autism and Aspergers are disabling, they can prevent us reaching our potential unless we learn strategies to manage these aspects or receive support from others (people of any kind) to help us do the things we cannot. For example, when is a disabled athlete disabled? Are they disabled when they are swimming faster than many able-bodied people? Or are they disabled when they can’t get into a changing room to try on clothes at a store? Or when they can’t ride the bus with their friends? Or all the time?
Am I disabled? Sometimes, my Aspergers affects me in ways that make it difficult for me to do simple things, but it helps me to do my job very well. I can and do drive, travel, work, have a family, cook, run a business, do taxes, look after animals, teach children and adults. I don’t look or sound disabled (except perhaps mid-meltdown when I suspect I look more stroppy that disabled),
When children at school have screaming, yelling tantrums with physical aggression, they are often responded to quite differently if they are known to be autistic. I don’t understand this at all. Most kids have the odd tantrum here and there, especially in the first couple of years at school. Why would a parent be required to come and pick up their child because of this. Apparently it is because the ‘child can’t cope because of their autism.’ The non-autistic child is required to make reparations for any damaged caused and then to rejoin the class. In my opinion, this should be the same for autistic kids, AFTER they have calmed down. Then in both cases the teacher should analyse what happened, explore possible whys and possible strategies to prevent further meltdowns. This caters to difference, respects the disabling aspects of autism and sets kids on the path to achieving their potential. When autistic kids are ‘expected to have meltdowns’ in accordance with the theory of self-fulfilling prophecy, they do. This expectation is disabling and othering.
When accompanying a manager somewhere, we got lost because my manager thought I would not be able to map read because of my Aspergers. The irony being I love maps, am an excellent map reader and can memorise the relevant sections of maps. The assumption was that I am less able because of my Aspergers, which is plainly untrue in the map reading arena. I cannot, however, tell left from right and use ‘my way’ and ‘your way’.
In order to raise funds for their work many researchers and charitable organisations play on the perceived tragedy of the condition that they deal with. This has become less pronounced in many areas of medical and disability research. For example, we no longer have the spastic society or crippled children’s association. What we do have however is a promotion of autism as a puzzle, a disorder that locks children away from their parents, a difference that is so different that autistics are other than human. Interestingly enough, I actually think that the difference in experiencing and responding to life is so different for autistics and non-autistics that we are different in a fundamental sense. However, I do not mean different AND less a led than (disabled), I mean different.
If a child cannot read because they need glasses, they are usually provided with glasses and then learn to read. If an autistic child cannot prove they can read because they are non-oral, instead of trialling different ways of communicating all too often it is thought the child is unable to read and unable to learn to read. This is disabling and destroying potential. I am so grateful to be oral and I get frustrated by the lack of recognition of intelligence and ability in those autistics who are non-oral, or those whose behaviour is still expressing frustration, distress or anger rather than knowledge or skills.
Many years ago, society thought that someone in a wheelchair was inherently less able, now we celebrate the achievements of the Wheel Blacks (New Zealand’s national wheelchair rugby team). As a child I was taught that people with intellectual disabilities could not learn, and then I taught some and discovered that everyone has potential. My aim is to educate all parents and educators about the inherent humanity of all autistics and the huge potential that we individually have, and how to ensure that their words and actions enable us to thrive in all our difference rather than disabling us.

3 thoughts on “Autism/Aspergers – disability, difference or disabling?

  1. Great post.
    I really do feel that Aspergers is very much misunderstood.
    I think the media portray it badly & people that think they know about it can only come up with the basic ‘ no eye contact ‘ rule. Well I’m a female aspie & have been able to look at people for a tiny bit & forced myself to hold it in interviews to the point I was dying inside.
    The thing is also where male & female aspies differ & no one really knows that unless they are Aspergic or know aspies etc people can be very ignorant about it.o

    I thought my diagnosis would of made my life easier but I can’t say it has now. I feel fuzzy & even more alone.

    Thanks for posting!
    Maria

    • Maria, have you connected online with other adult aspies? I did this following my diagnosis, and I joined an adult Aspie social group :-) it is amazing to be around people that I understand and who understand me! Facebook has a number of these, some nation specific and some international. Each is a bit different, so you may need to visit a few to find on you are comfortable with. ASAN is a good resource too.
      I agree that Aspergers is wildly misunderstood and my passion is to correct that with shared lived experience accounts. This blog is a part of that. I think with understanding and belief in our skills that our potential is incredible.

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