Language and autism

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.

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.

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.

As ever language is difficult and evolving, and provoking to some sensibilities.

Profound or severe to me means being at the higher end of the autism scale irrespective of intellectual abilities - thus unable to speak, less able to cope with society etc. - although with autism often being comorbid with intellectual disability it is inevitable that they become synonymous.

I really hate the way some people expect a diagnosis to go with a look. Some people may exhibit signs as with, say, Tourettes syndrome, or a hearing aid for deafness, but otherwise do they look different? 

And yes, I quite often look at people "swanning" along and wonder how hard they are working behind the scenes. I know a number of people who have invisible conditions and/or significant caring responsibilities, autism being just one of them, who seemingly cope well, but truth be known are struggling. 

Language is always evolving. Queer used to be used as an insult but now people have reclaimed the word and made it their own, as an example. We don't have to agree on what each individual prefers to be referred as. I don't like "disorder" because I see autism as a neuro minority that is part of the diversity of humanity. Calling it a disorder is pathologising autism and defining it as psychologically abnormal, which it isn't. Slaves wanting to escape from bondage were pathologised in 1850s America ("drapetomania"), homosexuality was pathologised , etc. There's a history of pathologising anything or anyone that is considered outside of normality. If anyone wants to use ASD as a label then that's up to them but I prefer autism, plain and simple. I'm not going to get wound up about it. The label Asperger's has been debated here recently and we know the reasons for/against using it. The problem with "severe autism" is that it only describes what people see and it gives the impression that there is a scale of autism with severe at the extreme end. "Autism" as currently defined is an umbrella term that groups people together based on the common difficulties they experience. It doesn't actually describe much except Ottilie (for example) has communication difficulties just as Iain does, just as Peter does. My communication difficulties may look very different to yours, which means our autism-ness may look different. That doesn't describe how we experience life or if we are suffering. Someone that is described as severely autistic may not suffer as much as I do but the majority of people may make assumptions that the severely autistic person does suffer more than I do. I present as neurotypical to most people. I have the ability to mask. I have relationships. I have a job. I don't stim in public. That's what I think people are describing when they say "severely autistic" - someone that is incapable of those things and behaves in ways that they perceive as typically autistic (rocking, flapping, echolalia, learning difficulties) with no hope of living independently. I think that's what Peter was saying about the label "severely autistic" - people have a perception that what that appears to be is true autism and people feel pity for people that present that way, whereas autistic people that are able to mask and appear more like a neurotypical person are viewed as being less autistic and not suffering as much, which is incorrect because quality of life is difficult to measure. Is an individual less likely to suffer if they are not as aware of what they are missing out on or the pressure to behave a certain way? Maybe. I was told years ago that my son would suffer higher levels of anxiety than if he was less able to mask his autism, which seems to have been correct from our experience. There's no way of actually knowing though. We'll never know if he would have felt less anxious if his IQ was lower or he wasn't able to mimic neurotypical behaviour. 

When my son was younger a lot of people didn't even know the word "autism". Neurotypical wasn't a term that was widely used. There has been progress. I don't know how you think a consensus would be reached. It seems that the language has been imprecise and inadequate and exclusionary and that it's still evolving as understanding grows. I don't think the labels need to be agreed upon before there can be more understanding. In psychology a minority influencing a majority is called conversion. Over time minorities can change the views of the majority to accept the minorities viewpoint ("minority influence"). It would seem logical that a majority would hold the power to make the minority conform and be compliant through social pressure. However minorities are able to influence and convince the majority that the minority's views are right through informational social influence, that is providing the majority with new ideas and new information, which leads them to re-examine their views. In order to change the majority’s view, the minority has to propose a clear position and has to defend and advocate its position consistently. Consistency can be diachronic (consistent over time) or synchronic (all minority members agree and back each other up). An example is the suffragette movement. A reporter came up with the term "suffragette" to belittle women fighting for the vote and they embraced the term and used it to their advantage. Before that they called themselves Women's Social and Political Union. I'm giving that as an example because it didn't harm their movement that the label that they eventually became know as was different to the one they started out as. What worked was being consistent over time and as a group in agreement about the desired outcome to influence the majority and achieve their goals. I don't think it harms a cause for language to become more precise and inclusive, or embrace the words that may be used in an attempt to belittle or come from a place of ignorance and make them your own. Autism is hardly a lovely word, in my opinion, and it fails to express the richness of how I experience life through my senses. I think the Maori word for autism invented by Keri Opai is the closest to what I feel I am - "Takiwātanga" my own time and space. www.altogetherautism.org.nz/.../

I have zero ability to modify my visceral and debilitating revulsion to touching certain textures. I can try to avoid touching them, but it is not an absolute ability. I cannot hold a meaningful conversation if there is a lot of background noise, which has been problematic in my job, and my intellect has no effect to mitigate that either.

Its a false assumption that being aware you have poor social skills empowers you to improve them. In very much the same way that being an expert in the maths of juggling won’t nessiceraly  give you the coordination to be a good juggler.

A valid point. My understanding is high functioning autistic people are significantly more likely to commit suicide than low functioning persons. But it’s a bit like comparing apples and oranges.

Martin said:

How comparable is the suffering of people who cannot live conventionally fulfilling lives because they are intellectually limited, and the suffering of people who are intellectually capable of living conventionally fulfilling lives but who struggle to do so because of autism traits?

Those with the ability to learn how to deal with their traits and modify behaviours to make them less of an issue are clearly less disabled as they have the potential to do something about it.

I m not sure of that. How comparable is the suffering of people who cannot live conventionally fulfilling lives because they are intellectually limited, and the suffering of people who are intellectually capable of living conventionally fulfilling lives but who struggle to do so because of autism traits? The former may not suffer as much exhaustion, frustration, disappointment and mental illness as the latter. So I think that definitely stating that one group is more deserving of help than the other is difficult to sustain.

This Person (Ottilie) said:

I think it will change as the general population becomes more aware of what autism is,

If we, as autists / autistic people / aspergers etc cannot even agree on our own definitions and labels, this does not bode well for how neutotypicals will be able to understand us.

Is there any definitive source of these definitions?

We really should reach a consensus if at all possible and follow this, even allowing that in society today there will be fringes who want their own version of the label or who disagree on details.

Is this asking too much?

^

Excellent way of looking at it. Thanks for saying what I was thinking! Glad I'm not alone.

I'm not a fan of that term, but I'd take issue with your point that

Peter said:

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

People who have an intellectual disability *are* more deserving of those things because they have less ability to cope without them. 

On BBC recently there was a program called Inside Our Autistic Minds. I don't know if you saw it. Ken Bruce's son, Murray, was on it. He's never spoken. He doesn't communicate in the conventional manner. He made a short film for the programme. 

I don't really want to get into this discussion however,

This Person (Ottilie) said:

The majority of material up until recently was not about the lived experience of autistic people, it was about perceptions of autism from the outside. That's changing though and that in turn will change the general perception of what autism is. I think it's especially encouraging that the NTs are reading works by autistic authors, celebrities are "coming out

...this is people who are able to communicate in the conventional manner. There will be people out there, like my friend's son, who probably won't be able to do this even when he gets to adult age. So yes it's great that there's more inclusively when it comes to research and material, but it still only covers the lived experiences of those who are able to articulate it in a way the majority can understand.

I am reminded of the scenario of the duck or swan where people see only what is above water. The majority of people don't know how much effort goes on unseen to do the things others would find straight forward 

I agree and it is frustrating and at times makes me doubt myself and question if I really do have autism because I'm not severely affected like some are. I agree in thinking it will change as more awareness is made with the condition and how it affects people.

People say that because they are describing what they see. It's the same attitude that leads to comments like "You don't look autistic". Even the other day someone said "severely autistic" in my presence. She's a special needs teaching assistant. She knows I'm autistic and that my son is autistic. It's disheartening because you think she would know better but also I don't see a distinction between someone that is labelled severe and myself, whereas they do. I think she actually said "severely autistic" for my benefit, as in "I'm talking about someone who's autistic but I don't see you that way". I identify more with all autistic people than I do with any neurotypical people. I feel like a total outsider in the presence of most NTs whereas they view me as "one of them", as far as I can tell - because I don't look or act how they think an autistic person would be stereotypically. People like labels because it saves them from doing work. Unless something directly affects someone why would they learn about it? 

I think it will change as the general population becomes more aware of what autism is, as more are diagnosed and there is more exposure about our experiences. The majority of material up until recently was not about the lived experience of autistic people, it was about perceptions of autism from the outside. That's changing though and that in turn will change the general perception of what autism is. I think it's especially encouraging that the NTs are reading works by autistic authors, celebrities are "coming out" as autistic, younger people seem to be more aware and accepting. In the meantime challenge that perception if you feel able to. Yeah, it's annoying as hell. I like the approach that Katherine May (autistic author) has - at a social event she could tell someone was going to say something about autistic people and she said something like "Before you go any further I want to let you know that I'm autistic and I wouldn't want you to say something that you may regret if you didn't have that information ".  

I understand your frustration, intellectual disability is just a comorbidity of autism and assessment criteria for autism make no mention of intellect at all. Profoundly autistic is a term that should be reserved, in my opinion, for autistic people with average and above intellect who are non-speaking, or whose sensory/communication/anxiety problems impact their ability to function in society very negatively. It is arguable that it is as illogical to give people with intellectual disability who also have poor social skills the primary identifier of 'autistic' as it would be to give Intellectually disabled people who are highly sociable the primary identifier of 'allistic' (or 'neurotypical').