The subtlety of ableism
Updated: Aug 10, 2019
"I have a friend who's weird like that..."
I have come to notice recently that my autism diagnosis is not so much changing me, but it's more likely to change the people around me. I'm very open about my autism and ADHD diagnosis. I feel absolutely no need to hide the person that I am. I have too much self respect to bury all that is me and I feel a great need to educate people. And boy, do people need educating!
One of my readers and dear friend recently wrote to me: "In some ways, autism is at the point that gay rights were, say, 40 years ago: a sort of shadow world where most were suspicious or just-plain-horrified at gays and their behaviour."
The DSM-I, the very first psychology bible, classified homosexuality as a “sociopathic personality disturbance”. Gays were labeled as immoral, broken and socially evil. Psychologists back then tried to 'treat' and 'cure' homosexuality and it wasn't until 1973, that gay and lesbian activists by means of riots, protests and disruptions, forced the APA (American Psychiatric Association) to remove the diagnosis from their manuals. Despite that historical moment of human progress, even today, groups of discriminating activists lurk in the shadows where they pray on the stigmatised and aim to 'cure' homosexuality.
I am not debating here whether autism is a disability or not. I feel only the individual autistic can truly determine for him- or herself whether he or she experiences his or her autism as a disability. And I am not debating whether or not autism should be mentioned in the DSM. By comparing autism to the gay movement, I'm trying to highlight the ableism that can occur around the identity of a group and how we as a human race are inclined to respond to other people's differences in behaviour, preferences and tendencies.
For example, take a look at the statement of Dr. Ivar Lovaas, the founder of ABA (Applied behaviour analysis), as he describes autistics:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person."
"They are not people in the psychological sense"
I truly believe that researchers and psychologists are at the root of some of the most persistent misconceptions there are about autism. If history teaches us anything, it is that how we communicate things, whether written or spoken, can have a very profound effect on how we deal and perceive things in the future. Thanks to the descriptive statements used for autism such as 'lack of empathy', 'obsessive nature' and 'social awkwardness' our identity has been taken by the masses and used as an invective to condemn anybody for not following standards of desired behaviour - which, I'd like to add, is almost always coloured by personal preferences.
When I received my diagnosis and first started telling people - friends, former colleagues, family - about my autism, I started off very tentatively. I was still afraid of the judgement, I was still fragile that way. I recall sitting down with an acquaintance once when I shared my diagnosed with her. She already knew I was having inexplicable health issues, so I thought I could explain to her how I finally figured out why I have such physical trials. When I finally got the words across my lips - and yes, that took effort - she reacted by saying "Oh yes, I have a friend who's weird like that" and looked away.
Negative language - as used in many descriptions of autism - forms a deeply edged, discriminating association with an otherwise perhaps neutral subject.
Not only do I sometimes receive mind-blowingly judgemental comments when I talk about my autism, I've come to notice that for some people, it's a perfect excuse!
'You're autistic, so you don't understand anything about social relationships and it's not your fault.'
'Because of your autism, you cannot possibly conceive what I'm feeling.'
'Autistic people just aren't interested in others.'
It is absolutely astonishing how quick people are to attribute any negativity to MY autism. Whenever I disagree, whenever people disagree with me, whenever things don't work out the way they were supposed to, it's often because of my autism... It's because of me and yet, somehow, not my fault, or so it's said. Talk about a mindfuck!
One thing I get hit with often, is 'the lack of empathy' statement. However, as many researchers and psychologists know (but what is rarely communicated to the outside world) is that the description 'lack of empathy' is selling us short. Psychology today has a great article on this subject. You see, empathy is not just one thing. It actually consists of different aspects and variations. There is cognitive empathy, or the ability to pick up how people are feeling based on solely their behaviour, facial expressions, and speech and how to adequately respond to that. And there is affective empathy, or the ability to feel what other people are experiencing.
To demonstrate this, let me tell you about something that often occurs between my husband and me. Sometimes, my dear husband gets a little frustrated with having to clean up behind our kids or cleaning the house (which he only does when we're expecting company, by the way). He'll stomp around sighing loudly, slamming cabinets, cursing and the expression on his face... well, it aint pretty. I easily pick up on this. I can feel my breathing cramping up, I get a knot in my stomach, I get nervous, agitated and frustrated as well, so what do I do? I leave! It is so uncomfortable for me to be around him when he is in this state, that I just want to find my zen again and let go of all the negativity. So, great affective empathy yes, but not so great cognitive empathy because I have no clue how to help him. I could, of course, help out with the household chores, but being around his negativity is often too much for me. Plus, I have trouble telling whether that is what he really wants me to do!
So, like most autistics, I'm perfectly able to emphasise with how people are feeling. I just have trouble determining what is expected of me.
I've often described myself as a chameleon, taking on each color of emotion of every person that crosses my path
And then there's social communication. Oh yes, the wonders of conversing about any random subject, no matter how trivial, such as toothbrushes. According to the diagnostic criteria for autism one must experience a persistent deficit in social communication and social interaction. In other words, we're socially awkward. The university of Edinburghwhen, however, has shown in a lovely study that when autistic people communicate with other autistics, they do this just as effectively as neurotypical people do amongst themselves. When autistic people were paired in conversations, they reported feeling just as much comfort, similarity, and empathy as any bunch of neurotypicals would. As the researchers wrote:
"In essence, what we are demonstrating for the first time is that autistic people's social behaviour includes effective communication and effective social interaction, in direct contradiction of the diagnostic criteria for autism."
It was only when autistics were paired with non-autistics, that the proverbial shit started to hit the proverbial fan and a lack of understanding - on both sides - dominated the proces.
So, really, autism is just as much characterised by a lack of understanding during social interactions with neurotypicals, as neurotypicality is characterised by a lack of understanding during social interactions with people on the autism spectrum.
Not only that, but the researchers of the university of Edinburgh wrote that they had found empirical evidence that there is a form of social intelligence that is specific to autistic people. So there! Not a lack of interest, emotions or whatever, not a disability, but a difference.
There's much more language out there that needs to be addressed. Many words used to describe autism are negative in some form and create an even bigger gap between Neurodiversity and neurotypicality. To mention just a few examples:
- Irritability or mood swings. This type of wording is stigmatising and overlooks the pain and distress causing the irratibilty which is often a result of sensory overload. So, let's call it that, not irritable, but in pain or distress.
- Lack of eye contact. A lack of eye contact can also be interpreted as an extensive listening skill. Instead of being distracted by focussing of facial features, autistics, like me, often revert their eyes in order to really hear what's being said. So, let's call it that, not a lack of eye contact, not a lack of interest, but an intense listening skill.
- Non-verbalism. Non existing or poor language skills are often portrayed as plain stupid, low in IQ, withdrawn or as a lack of intelligence. Non-verbalism however, has NO connection to intelligence, (social) engagement or interest. Not long ago, I read the story of Ido in Autismland. Ido is a non-verbal autistic in his twenties with special needs and he is considered severely autistic. Ido is also the author of two books, held a video presentation at UN World Autism Day and is currently a student at university. As Ido says 'many autistic people are trapped by a motor system that has poor linkage to the brain's commands for movement.' He may not be able to speak, but Ido is as smart as a whip.
Negative phrasing used in the description of autism seems to be the fundament for the ableism that torments the autistic community. Not only ableism affects us on a daily basis, for some reason, all things socially bad seem to be attributed to our identity.
Do you disagree with someone?
It's because of your autism.
Can you not relate to someone who acts hysterically?
Well, you're autistic, so how could that be expected of you?
Is the clerk at the front desk being an asshole?
Then he must be autistic.
Would someone rather not speak to you or stay away from you?
Something must definitely be wrong with them, perhaps they are autistic.
Just as we have banned the 'N-word' and calling people gay and disrespecting them for it is less and less tolerated, let's do the same for autism.
As the autistic academic Sandra Jones wrote so elegantly: "Please, don’t use our identity as your insult."