Separating The Self

Much of what we are trying to cement here, can't be. Absolutisms, but everything is open to variation, and nuance I guess.

For me, labelling myself doesn't fit. Maybe one day it will. But that change will be because of external responses to the term I think. So for me it's more a cultural issue than an issue of terminology I guess

Couldn't agree more

It is but isn't some of it about otherness too maybe? Is some of it about cultural ideas around a word as well? And negative connotations

I'm less worried about mono-labelling.

Adjectives are not exclusive.  If i refer to someone as a "tall person" that doesn't stop me thinking about the idea that they are also female, married, british, artistic, and talkative.  

Autistic only becomes all encompassing when it's associated with stigma.  People don't complain about being labelled as Christian, for example, or being labelled as a mother, because they don't see it as a negative.  It's just something that's a part of who they are.

"Labels" have the implication that there is something dismissive about it.  But in fact they're just adjectives.  

Glitter said:

So when I say "I'm autistic" as if this explains everything, it actually explains nothing.

That's probably why I get no reaction off the people I tell. Who I tell with a purpose because I think it's relevant to the situation at hand like at appointments and i now know what difficulties i have. I understand in my head how everything fits together and for some reason expect them to have some sort of idea of any of this. I think often people don't want to assume anything or/because it takes them by surprise.

I agree with everything you say although sometimes it's easy to fall into that mindset and hard to get out of. Like when my partner and I miscommunicate, in my mind it's down to autism but it could be a male/female thing or personality.  I think we naturally want to look for explanations for anything and everything. I think often things are a combination of factors. I think some of it comes down to self confidence, awareness, support networks and being to advocate for oneself (ie not "I'm not doing that cos I'm autistic" but "I can do that but in a modified way"). Also the narratives around autism are often negative and about deficits not strengths so they dont instil belief in the individual. I can't speak for others only my own experience.  Also, we have to remember autistic people are not the only ones who have problems.

You raise a good question here JT, but my mind was immediately knocked into a sideshow question that silently bugs me, so I didn't want to immediately comment and derail the main drive of your question.  Now, however, feels like an ok time.

So if we, as autistic people, always resort to telling ourselves that "well it is because I am autistic" (or whatever form of words you prefer) then how will any of us ever improve ourselves and our lives if, in fact, we are autistic BUT WITH co-morbidities that actually make us rubbishy humans, whether autistic or not?

As an extremist exemplar, I don't care if a dangerous psychopath is autistic or not.....first and foremost, they are a dangerous psychopath to me.  As a more balanced exemplar, someone with crippling BPD and autism might never seek help and comfort for their BPD if they spend their life repeating to themselves that "well it is because I am autistic."

I think we need to be very careful with using (and self-believing) blanket terms and labels.  I want to improve myself - I'm more than happy to be autistic - but I also feel that there is much, much more to me and my "rounded edges"  than that.  I'm vigilant to look at the "whole self" not just the foundational "autistic self" and I wondered if anyone shares a similar sentiment and concern for "mono-labelling" (if that isn't a term, then it should be?)

I think, ironically, that I have a bit of a "theory of mind" gap when it comes to autism as well.  I have an idea of what autism means in my head after looking at all sorts of sources, and sometimes I forget that other people don't have the idea and meaning in their head.  So when I say "I'm autistic" as if this explains everything, it actually explains nothing.

In the same way that we all have an idea of what the word "mother" means, but that idea and its associations have grown out of our own experience.

It's like the Sally Ann test all over again.

I think there's an element of self understanding and confidence needed. That's what a diagnosis has given me but it's always work in practise.  Also being able to communicate one's needs sufficiently. Part of me does want to mention autism to others just to make people more aware of the diversity within it. 

Definitely.

I like your point about disclosure. We should just be able to disclose our challenges and ask for space for those. I guess, because we expect others to appreciate the elevated level of issues autism can cause, for people to me more understanding. Sadly, I think it just makes things worse in a lot of situations.

I'll take that note on only disclosing difficultes forward I think

Thanks

There are people who are not autistic who also have difficulties for example with loud noises. They might just say so, without explaining themselves. We should be able to state our preferences or needs etc as just that and it should be respected. 

I think often as the wider world has fixed ideas about autism, I think sometimes the autistic community has fixed ideas about what neurotypical means. This is understandable as many autistic people have faced difficulties in life around others. 

There needs to be more discourse between the two camps.

Jackpot.

This is the exact issue, and why I don't feel it's right to categorise people into groups often.

If there is ignorance in the air, then it's almost impossible for equality and fairness to prevail

For me the problem is that the general public have this category called autism but they don't understand what it means.  They have a vague sense based on stereotypes. 

The category autistic is more useful for me because I work in a school where there is much more awareness.  But in other places I might as well say I'm Kelpian for all the understanding it brings.

Words are helpful in getting us to make sense of the world.  But that only works if we all understand the same meaning.

Thats sort of my issue. Why should I have to tell people?

I'd rather say, if a situation required it, to say ' yeah sorry, I struggle with load noises... Or... I have some sensory issues...or I just don't excel at making small talk'

Overall I think I have an issue with the societal need to categorise people so readily. They call it autism, I call it normal

Autistic is an adjective (describing something) but autism is a noun (an actual thing.)  So saying "I am autism" is a bit like saying "I am glasses."  

I am autistic.  I am queer.  I am British.  I am a parent.

Language is weird.

For the problem with person first language is the idea that it helps "humanise people."  As if autism were such a strange or frightening thing that it makes people forget that I'm also a person. 

I can talk about a "tall man" or a "blonde lady" without my listeners getting so wrapped up in tall or blonde that they stop thinking about them as people.  I don't need to say "a man with advanced height" because being tall isn't considered to be a defect.  Person first language only reinforces negative attitudes about disability. 

NeuroDIVERSE refers to a group of people with different neuro characteristics. 

It's more accurate to say that you are neuroDIVERGENT.  

Personally, I don't identify as autistic. I only say I'm neurodiverse, and leave it at that.

I'm also disabled with an invisible condition. That is also nobodies business either.

Only ever reference either on application forms sometimes.

I also don't identify my race or relationship preferences. Why on earth should I!?

I enjoy being a private person, it's my world, and if I let you in then you are blessed, and usually quite exclusive!

Though there are characteristics where both ways are acceptable, e.g. I've got dark hair, I'm dark hair

I can understand your frustration, but although we don’t want to play into the ‘autism as defecit’ narrative, I’m not sure what alternative there is to having to state, at times, that you are autistic and have people meet you with a little more understanding. Or to say to nobody and mask in every context  or put up with unmediated environmental challenge at the cost of your energy, mental well-being, etc. 

it must be the same for people with hidden disabilities - at times they will simply have to announce it to be accommodated, in a way a wheelchair user for instance would not. There is a trade off and balance in everything.