Published on 12, July, 2020
You know I am not want to quibble about language I would normally say you should use whatever terminology most quickly and accurately conveys what you’re trying to say regardless of whether it’s politically correct. Autistic person or person with autism it makes very little difference to me. High functioning or low functioning yeah I think we all understand what that means now. But there is one terminology that I am seeing but I am not a fan of.
people who say that this person is profoundly autistic or very autistic or severely autistic. Because they’re not talking about the core symptoms of autism being more serious the lack of social skills the special interest are repetitive behaviours. They’re talking about intellectual handicap. As if people who have an intellectual disability are somehow more autistic than people who do not. and the logical extension of this is that they are more deserving of sympathy and help and special accommodations. and these intellectually disabled autistic people are the true autistic people the profoundly autistic people and the ones you have to take seriously not like these high functioning autistic people. they don’t really need help. at least that is a subtext which is conveyed.
I mean no one says “he is so profoundly autistic he kept me talking about quantum physics for an hour even though I tried to change the subject multiple times and then tried to follow me in to the ladies loo to keep talking to me about quantum physics.”
no one says, “he is so severally autistic he thought a good icebreaker would be the group discussing what sex toys we have.” Even though this would be the proper use of the term.
no when they say profoundly autistic they mean “he’s 26 and has a mental age of 12.” I really wish we could stop people and I guess by people I mostly mean parents from using this terminology.
I can only offer my own perspective.I am intelligent and able to speak but my quality of life is extremely poor and I am not functioning.Because I am intelligent I can understand that I am different from others but I do not have the ability to be different no matter how hard I try. I cannot change my interests, I cannot change how I socialise naturally, I cannot change my sensory sensitivites and I cannot change my communication difficulties. But because I am intelligent I am expected to try - this leads to people seeing my difficulties as laziness, not trying hard enough, and optional. A lifetime of people telling me these things has had a severe impact on my mental health and I feel suicidal every single day. Even on days when I feel somewhat happy I struggle to see a place for me in society and where I am able to meet the demands of everyday life.
Because I can speak or write well people assume I am communicating. I am not. I am able to see that someone has had a negative reaction (when I try to make eye contact) to what I have said if their facial expression is obvious enough but I cannot determine why so I can't do anything about it. Intelligence won't change that, scripting won't change that. I don't wear appropriate facial expressions either so people make assumptions about my state of mind that are often negative. I can't process verbal or written information at all when anything is stimulating in the background (someone is too close, repetitive noises, loud noises, electrical noises, too bright light, another conversation, repetitive movements in my periphery, strong smells). I still struggle to process verbal communication in situ even when it is quiet. Often I will listen to what someone says and not be able to process until I have left the room - decisions are made in the moment on this 'conversation' but I was not able to understand what happened, give my thoughts or objections, or ask any questions for clarification. I don't see how that was then a communication between two people despite that I was able to form words. I cannot verbally advocate for myself at all regardless of my intelligence.You might think I communicate well in written form, and yes I do, because I can take the time consider what is said, what I want to say, to process the information and re-write responses after consideration of their interpretation. But I would still struggle to do this in the moment with a text to speech device (I'm curious whether a non-verbal person would struggle in the moment if they had a way to perform text to speech, i.e. can a non-verbal individual process communication in situ?). I can only communicate asynchronously which means a lot of information is lost, decisions take longer (meaning people often make them without me or for me), there is a bigger margin for misinterpretation and misunderstanding and little bonding can occur.I have extreme sensory sensitivities that I can do nothing about. I can't eat with another person including my partner without earphones blasting whitenoise (I can't even look at them eating after years of being forced to sit around others and eat despite massive meltdowns). I can't deal with very specific sounds and/or anything too loud or overwhelming. I can't cope with too much visual stimulation from light or repetitive movement. So basically I struggle anytime any living thing is near me. And when I say struggle I mean hands over the ears screaming and crying or bolting like I'm on fire followed by hours of flashbacks and repeating the thing over and over that upset me. I can't sleep without earphones because the noise of my partner breathing is too much. My partner's heartbeat on the mattress was enough to keep me awake at night and we had to change mattresses multiple times until we sorted that out. I can't go to the shop because I am too overwhelmed by well, everything. I have given serious contemplation to deafening myself with a knife because the noise of life is too overwhelming every single day.
Then I talk to people and I hear "but at least you are smart" or "at least you aren't severely autistic". And every single time it makes me die a little inside that no matter what I do no one will ever take my debilitating condition seriously because they consider me to be smart and because I can speak.
Bean said: I have given serious contemplation to deafening myself with a knife because the noise of life is too overwhelming every single day.
Unfortunately, if the auditory centres of the brain are starved of stimulation from the ears they sometimes create false noise as tinnitus. Deafness is not always serene.
This is why I haven't. I'm a PhD student in medical research so unfortunately I'm acutely aware of the problems that could occur with most of these types of actions and it is the only thing at this point that stops me. But the desperation sometimes is unbearable.