Published on 12, July, 2020
So I am finding people very frustrating. When you talk about your day to day struggles (because they ask) and people respond with “oh I’m like that too!” Or “isn’t everyone like that? Oh I must have autism too” and I’m just like what is going on with the world??? Anyone else had these issues with people????
My experience of suffering from neurological disorders per se (abi + autism) is that most people do one of 3 things in response to my displaying or description of my symptoms.
I still haven’t managed to work out which one is more annoying
I'm pretty sure it's usually meant well, as a way of expressing solidarity / support, but it does *so* minimise what's going on:
Me: "I struggle to remember things that my brain doesn't naturally attach importance to": Other: "Yeah I know! It comes to us all as we get older!"
Me: "I can't bear to touch fine emery paper": Other "Yeah feels rough doesn't it " (Or, "Don't be silly!" - mother and ex-wife, separately and often)
"I can't hear what you're saying with all this noise in the background" -> "Yeah my hearing's getting like that a bit - age again!"
"I'm 95% sure I'm autistic" -> "I think we're all a bit, in one way or another"
"I've been diagnosed as autistic" -> "You're still the same person though & you've achieved so much! / You're coping really well / (It can't be that severe then)" (Yeah it nearly killed me)
"I find interacting with people face to face exhausting. I've always wondered why I can't do superhuman hours at work like others do" -> "Yeah those meetings do drag a bit don't they?"
"Now I've realised what's going on and given myself permission to be kind to myself, I've reached a level of stress that feels low to me but I now realise is the normal healthy level. Things like not travelling for meetings" -> "That's good, and who knows, you might be able to travel again one day! (get back to the normal person we knew, when you've recovered from your autism)"
"I'm feeling much happier nowadays mum, now I know what's going on; I understand why I hate travelling and interacting with people, and love my daily routine." -> "That's really good, we were *so* worried about you! Maybe you will come [hundreds of miles] and see us soon?"
"Could you please wash up as soon as you've finished cooking that [disgustingly smelly teenager food]?" -> "You don't have to be full-on Aspie all the time just because you've been diagnosed!"
I'm sure there are more. I'm thinking of writing a phrase book "Don't take it to heart, they mean well!" :-).
I think it's a reasonable analogy.
Yes, an autism diagnosis requires fulfillment of several distinct axes of symptoms if you follow e.g. DSM-V, but these different axes are not co-morbidities. So yes, more than one symptom, but only one condition.
In the same way, pregnancy is one condition with several syptoms, though granted you could argue that only *one* very obvious central symptom is needed to diagnose pregnancy (the presence of a foetus!).
The analogy holds true though, in that with both autism and pregnancy you either have it or don't, and if you *do* the impact on your life will vary from person to person.
Co-morbid conditions of autism such as Ehlers Danloss, learning difficulties etc are not *required* for an autism diagnosis (and in fact muddy the waters as far as public perception of autism is concerned).
One can be autistic without *any* co-morbid conditions - that's why they're called *co*-morbid (meaning "occurring alongside / as well as") to the central condition, which can exist in isolation (like pregnancy can). If it couldn't, the comorbs would be part of the diagnostic criteria, and not comorbs at all.
I hate this analogy.
To be pregnant you need only one symptom-baby growing inside you, you don’t need any “co-morbidities” to be “diagnosed pregnant”. One is enough.
And to be diagnosed with autism you need more than one.
If someone has only one symptom of autism and nothing more then won’t be diagnosed.
Nobody will be diagnosed with autism just because of anxiety and nobody will be diagnosed as pregnant just because of morning sickness. Co-morbities are not relevant here. So you can’t be a bit pregnant, just pregnant with more easy or more difficult pregnancy.
But you can have sensory processing disorder or communication issues without autism.
"well everyone is a little bit autistic". Well I suppose that could be true. In the same way that everyone is a little bit pregnant.
This is interesting as people often say I'm "difficult to read" or they have "no idea what I'm thinking or feeling" and I'm never quite sure what they mean. Obviously they don't know what I'm thinking? As it's only me who knows that? Wouldn't it be kind of creepy if people could hear your thoughts?
Replying to Plastic's last here but don't want to go too deep on the nesting / threading as all replies here are relevant & interesting!
I find Empathy as a subject quite fascinating. I believe that I have good cognitive empathy but poor affective empathy, so I've experienced at least some of the aspects of empathy.
One thing I find fascinating is that people with ASD seem to have effective empathy with *each other*, and people without ASD seem likewise to have empathy with each-other, but there are difficulties between the two groups - which is the part relevant to this thread, i.e. the double empathy problem, and the difficulty that NT people have to tap in to / "feel" the experience of people with ASD.
If I read your reply correctly Plastic, I think you're right that *some* things that laypeople consider to be empathy are little more than "This is how I would feel in your situation, therefore that must be how you feel" (which easily fails to be accurate when the two people are very different) - but I do think that there are things going on in the affective / intuitive domains that I don't experience and hence can't quite fathom that are nevertheless real and genuine(?) nonverbal connections between individuals. Some of it is to do with emotional contagion, which I do get a bit. But this is starting to touch on Philosophy; what is "real"? Is experiencing something that appears to be helpful and true enough to make it real? People taking recreational drugs have reported all manner of weird things that seem to be helpful and true, e.g. the illusion of telepathy.....
Fascinating stuff.
Spending time with other people on the autism spectrum is always so much easier as by and large we respond the same way to things and behave more similarly. People on the spectrum do tend to socially mirror each other. I think you’re right in that it is more about the different levels on which we communicate rather than lack of empathy per se.
In my measuring of NTs to understand this 'emotion' and 'empathy' thing they go on about, I've concluded that it's all fake. It's totally superficial - but it's a language they all speak and mirror each other naturally and instantly. They are good at this mirroring - but it's all an act - another of their lies and falsehoods. It gives them a good basis to be accepted by each other as 'the same' so they are not treated with suspicion by each other.
They then do the same as us and calculate what is really going on. Unfortunately, we miss out the instant mirroring response - we need more data to know what emotion is appropriate - so we are seen as having no empathy.
Exactly! They apply their own set of parameters to our experience and assume that we react the same as they do, which we don’t! I think our almost bionic ability to cope with A LOT really confuses NTs. A fraction of the things that we have to endure would floor them, whereas we just get up again and keep going!
It’s much more effective when you can apply problem solving strategies to issues rather than getting weighed down by how you ‘feel’ about it! Better to work out a way to manage any difficulties and then get on with enjoying life.
I have a couple of NT friends, both lovely people, who speak of being able to feel all of these emotions emitting from other people when they are talking to them. That when they walk into a building full of people they soak up all these feelings that are radiating from all the other people in the building! I find the concept of lots of feelings and emotions kind of floating around in the air anywhere where they are people quite odd! (Momentarily checks under chair to ensure that none are hiding there) I don’t see any! Yet somehow NTs are able to tune into all this emotional information! Next time I see one of them I will ask what, if any emotional data they receive from me. Though I think that quite possibly anyone on the autism spectrum is quite emotionally blank to an NT, because we don’t feel the same so there’s simply not the emotional data for us to be throwing out into the air! I think also we (people with ASD) emit a different frequency of energy to NTs which is why we can sometimes pick up on stuff in each other that would fly under the NT radar!
We make them feel uneasy because they don’t understand us. They can’t pick up on the emotional data from us that they’re used to obtaining from people and it confuses them.
I know aspies are supposed to be the ones with empathy issues but it really makes you wonder. I always found that I feel comforted talking to other aspies rather than neurotypicals. I assume they feel the same way about us. It's pretty weird but imo just goes to show how rather than being unempathetic, we just have enormously different communication styles.
Yes - they keep telling me I'm chronically depressed when they understand my daily problems - but it's them applying their own feelings to how they would feel if they were ill like me.
I'm aspie so I see the issue and engineer solutions to maximise my life in the 'well' gaps between the problems - and I still get more done than a 'normal' NT!
My wife is counsellor and can easily 'read' people but she says I'm totally blank - there's absolutely nothing coming off from me - zero data - I'm impossible to read.
I think this is why I make people feel uneasy - I'm closer to robot than human - I come across as 'not possible'.
And they have the nerve to label us as self obsessed! Pah!
I’m sure they do ‘mean’ well but sometimes I just want people to ‘get’ it not to try to rationalise it. I’ve even had it with professionals that I know personally, that work with autistic people, I’ve had to spend such a long time explaining how something ‘really’ affects me because their first reaction is always to try to rationalise it according to the non-autistic perspective!
Reminds me of a joke I made up (AFAIK): "Why are narcissists rubbish at singing musical scales?" / "They get stuck on 'me-me-me-me-me'"
Great comment. It does make me wonder whether or not neurotypicals are unintentionally being dismissive (I know they struggle to read aspie body language, and we struggle to make them understand) or if this is genuinely reassuring for them to hear other members of the group are suffering too.
no - they're actually thinking "me me me me me me me me me me me me (can't be bothered being concerned about you) me me me me me me me me me me me me me"
It's almost like they're saying "La la la I'm not listening you're just like me you can't be different - does - not - compute..." :-)
I've told only a handful of people, perhaps 5 at most, and I got the "well everyone is a little bit autistic" response and the "well you seem to cope fine, what's the problem?" response