Should autistic people campaign for recognition as a distinct part of humanity rather than be labelled as disabled?

I remember a few weeks ago (on this very forum) when I said that I didn't consider myself disabled - just different. Last week for the first time I felt really disadvantaged and - yes - disabled. 

I'm in work and the way other people work I find absolutely chaotic - I cannot understand how anything gets done or why things are so disorganized. Everything I pick up at the moment is just trash because someone hasn't documented something, someone skipped something, or someone makes a decision when they have no idea about the thing they're deciding about - or they want something before it's ready. It's hard for me to accept that actually - that's the norm. Everywhere.

Probably the hardest thing is promotion in my organisation.The common experience is that you're dropped in there and expected to figure it out. I can't do that, unless there's a list of things I need to know/do/be aware of I won't cope. Which is the experience I had when I ditched a promotion and then spoke to other people who were having the same type of experience but were able to "hang in there". There's something about ambiguity and uncertainty that absolutely overwhelms me. And I don't mean having to know everything - but where I'm expected to do a role, and the information I need to do that role isn't cascaded, or an overview or just some kind of framework for me to organise it in my head then I'll start to unravel.

I finally accepted I won't be a leader of a team. The very idea of managing a group of people seems to me like herding cats. I could probably manage a team meeting (agenda, things to go through and discuss) and monthly check-ins (just) but all the other stuff that comes in with managing people - absolutely not. I also struggle to generalise. I need to "see" a job and understand it before I feel able to apply for it - because in many cases what I see in a job description, I've learned, is nothing like what the actual role will be. 

These problems aren't insurmountable - and there's things I'm doing to find a way forward (more job shadowing for example). Ideally I refer to myself as neurodiverse a lot of the time - and yes, I do see things differently. But there's times when I really do feel disabled. Where that inability to read people, or understand all those unwritten rules that everyone just "gets" and knowing what motivates/influences individuals, and that some people will drive chaos for others and not really give a stuff about it - even though they should - it's like being asked to win at a game when you don't know the rules. When I sit back and watch a group discussion as an observer I can see how the interactions work but to be in and part of it - I'm really struggling.

Personally I go through stages of acceptance and extreme frustration. Someone said to me today that "I'd have to move out of my comfort zone sometimes" - not understanding that I've been doing that pretty much every day for the last 40 odd years just by having to deal with people. 

I can't get excited about a disabled moniker - as long as no-one uses it to put me in a box. But if more people recognise the condition and can think of creative ways to support those of us on the spectrum (as I support NT's when I'm coaching them on various work stuff to up-skill them and make their lives easier) than that I can get excited about. 

Sounds to me like you are being force to follow the work customs of NT people. This to me just reaffirms my point in a certain specific scenario. Instead of you saying this is how I work and this is how they work and they are fundamentally different because we are fundamentally different types of people, you are looking at it like you  cannot conform to the "normal" status quo and so that means your disabled. It does not. This is a large part of the problem that I am getting at.  

I think it's a little more than work customs - that's just only one dimension of things. Because I don't understand the social drives/interactions of people it places me at a disadvantage in certain settings both in and out of work. Certain people skills don't come naturally to me and there's roles where, to be effective, like it or not, someone has to have a degree of understanding of how to influence, have  general people skills and possess an awareness of how people think and function.  

The point I was trying to make, and I don't think I did it very well, is that I'm all for a neuro-diversity label (which I think is a lot healthier and inclusive) but there will be those times where I will not be able to function as well as an NT. I'm thinking of specific works circumstances (although there will be others) where the situation has called for a particular approach to resolve the situation - having the technical answer is one thing, influencing people and gaining that "buy in" (and knowing how to do that) is another. A group of people with competing perspectives determining a way forward on a piece of work is an incredibly difficult scenario for me to navigate. They way people become divergent in their thinking, have a messy "groan zone" where all sorts of ideas are being thrown around and then become convergent is incredibly difficult for me. But that's the way reality presents itself. I still have to navigate it regardless.

In those circumstances I do feel disabled. It's not an issue of conformity -it's an awareness that I don't have the social awareness and those innate skills that would help me navigate those situations  effectively and I have be a bit more aware and work a little harder. Acknowledging there's a fundamental difference between myself and a neuro-typical may well be true, but I still have to learn and apply specific strategies to overcome those "blind spots". I am, in those circumstances, less-able and painfully aware of the challenges that presents.

NAS71674 said:

If you worked in a group of people just like yourself you wouldn't face the same issues.

But I don't work in a group of people just like myself - and why would I want to? It is neither realistic nor practical. The real world simply isn't like that. Communities aren't like that. Social groups aren't like that. Plus some of my best workmates are NT's - why would I want to deprive myself of those relationships? 

More than that, if I didn't make the effort to understand an NT's perspective the world be even more confusing than it is now. Irrespective of whether or not the world is, or is not "designed" for me (I prefer the idea of the way it has evolved with a whole host of competing ideas which are still in flux) , I still have to function in it - I can make adjustments and change my lifestyle but there will be situations where I am less-able and which will be harder for me. I'm comfortable acknowledging that. There's plenty of work situations I thrive in where the majority of my colleagues don't. 

Electric shock therapy is still a thing. It's just not the go-to thing because there are other types of interventions - medication, psycho-social which are tried first - and can be effective. Surprisingly, ECT can still be administered, in rare cases, without someone's consent.

https://www.mind.org.uk/information-support/drugs-and-treatments/electroconvulsive-therapy-ect/consenting-to-ect/

The basketball analogy doesn't resonate. There are some very short basketball players. Muggsy Bogues is shorter than me and I'd wager he'd still trounce me in a game. Size isn't everything 

Ever meet someone from a different county or background and didn't really "get" them until you understood more about how they thought, why they believe what they do, how their culture has developed. So many "aha" moments have come from me talking with NT work colleagues about how we respond to certain situations differently. To me it's about working out and understanding a different group of people and how to share our outlooks. I'm happy to be an advocate, have that exchange of information, so we can learn from each other but I'm not going to deny I feel less able (or disabled, or less competent) in some situations - because in those situations I am. But I don't let myself be defined by that situation or my reaction to it. I learn how to manage it better in a way which is comfortable for me and work with other people so there's a shared understanding of how we can support each other (although, as I pointed out to one of my senior managers, people and organisations are by their nature chaotic, so at some point I will be let down so I still have to navigate that when it happens). 

The disabled label I can't get excited about. I can acknowledge that I feel disabled (or less able) in situations which aren't as challenging for a NT but it's a case of using that as an opportunity to learn how to better manage myself (and influence others) in those situations. As I said, I've no problem with someone using the term - as long as they don't use it to put me in a box. 

Ethan said:

In those circumstances I do feel disabled. It's not an issue of conformity -it's an awareness that I don't have the social awareness and those innate skills that would help me navigate those situations  effectively and I have be a bit more aware and work a little harder.

If you worked in a group of people just like yourself you wouldn't face the same issues. Its not that you are disabled its that you are operating in a game/a system that is not designed for you or me. You are still looking at the situation from a NT's persons perspective which is also part of the problem.

Have you ever played a game like basket ball and you weren't good at it because you weren't super tall and instead of saying I'm just not suited to this game you've said oh I'm disabled because I can't play this game that wasn't designed for me well.

The theory is that, how NT's people look at the world and operate is the only way people should do that and everything every where is setup up for that world view, and if you can't do that your disabled. This is not the case and if people actually did something it could change.

There are other examples of different types of people where the general consensus was that they were dysfunctional in some way, and needed treatment such as shock therapy, but later the world changed and those people because part of the furniture and have their own identity as a group and are now generally accepted as such and respected and protected. I feel the same thing should happen for the autistic community but I doubt it will ever happen. If we weren't forced to live out our lives like NT's and could live how its best suited for us I think we could thrive even more so than the luckiest autistics do now. 

Ethan said:

In those circumstances I do feel disabled. It's not an issue of conformity -it's an awareness that I don't have the social awareness and those innate skills that would help me navigate those situations  effectively and I have be a bit more aware and work a little harder.

If you worked in a group of people just like yourself you wouldn't face the same issues. Its not that you are disabled its that you are operating in a game/a system that is not designed for you or me. You are still looking at the situation from a NT's persons perspective which is also part of the problem.

Have you ever played a game like basket ball and you weren't good at it because you weren't super tall and instead of saying I'm just not suited to this game you've said oh I'm disabled because I can't play this game that wasn't designed for me well.

The theory is that, how NT's people look at the world and operate is the only way people should do that and everything every where is setup up for that world view, and if you can't do that your disabled. This is not the case and if people actually did something it could change.

There are other examples of different types of people where the general consensus was that they were dysfunctional in some way, and needed treatment such as shock therapy, but later the world changed and those people because part of the furniture and have their own identity as a group and are now generally accepted as such and respected and protected. I feel the same thing should happen for the autistic community but I doubt it will ever happen. If we weren't forced to live out our lives like NT's and could live how its best suited for us I think we could thrive even more so than the luckiest autistics do now. 

NAS71674 said:

If you worked in a group of people just like yourself you wouldn't face the same issues.

But I don't work in a group of people just like myself - and why would I want to? It is neither realistic nor practical. The real world simply isn't like that. Communities aren't like that. Social groups aren't like that. Plus some of my best workmates are NT's - why would I want to deprive myself of those relationships? 

More than that, if I didn't make the effort to understand an NT's perspective the world be even more confusing than it is now. Irrespective of whether or not the world is, or is not "designed" for me (I prefer the idea of the way it has evolved with a whole host of competing ideas which are still in flux) , I still have to function in it - I can make adjustments and change my lifestyle but there will be situations where I am less-able and which will be harder for me. I'm comfortable acknowledging that. There's plenty of work situations I thrive in where the majority of my colleagues don't. 

Electric shock therapy is still a thing. It's just not the go-to thing because there are other types of interventions - medication, psycho-social which are tried first - and can be effective. Surprisingly, ECT can still be administered, in rare cases, without someone's consent.

https://www.mind.org.uk/information-support/drugs-and-treatments/electroconvulsive-therapy-ect/consenting-to-ect/

The basketball analogy doesn't resonate. There are some very short basketball players. Muggsy Bogues is shorter than me and I'd wager he'd still trounce me in a game. Size isn't everything 

Ever meet someone from a different county or background and didn't really "get" them until you understood more about how they thought, why they believe what they do, how their culture has developed. So many "aha" moments have come from me talking with NT work colleagues about how we respond to certain situations differently. To me it's about working out and understanding a different group of people and how to share our outlooks. I'm happy to be an advocate, have that exchange of information, so we can learn from each other but I'm not going to deny I feel less able (or disabled, or less competent) in some situations - because in those situations I am. But I don't let myself be defined by that situation or my reaction to it. I learn how to manage it better in a way which is comfortable for me and work with other people so there's a shared understanding of how we can support each other (although, as I pointed out to one of my senior managers, people and organisations are by their nature chaotic, so at some point I will be let down so I still have to navigate that when it happens). 

The disabled label I can't get excited about. I can acknowledge that I feel disabled (or less able) in situations which aren't as challenging for a NT but it's a case of using that as an opportunity to learn how to better manage myself (and influence others) in those situations. As I said, I've no problem with someone using the term - as long as they don't use it to put me in a box.