Do you ever think it's odd that diagnosis is essentially just us being classified, usually by neurotypical people?

Hi again,

I always find myself looking back on my diagnostic procedure and feeling quite traumatised. It was so embarrassing, what person in their mid-teens or in adulthood wants to mime brushing their teeth and read picture books and tell a story with a paperclip and answer all kinds of personal questions? I just found it really infantilising. I've reflected on it a lot recently, and particularly as I've read more and more material that says autism isn't a disease and we don't need fixing or curing [I still don't know where I am on this, I'm still on my journey] but it just seems really weird that we go to some kind of professional who is usually neurotypical to be labelled after answering their questions and doing their tests. I mean, I don't know how else diagnosis could happen, unless only autistics were allowed to diagnose autism which is just silly and would never happen, but... What do other people think?

I'm also tired of neurotypical people not listening to us. I'm sorry to say this - as I said before I don't do conflict - but I've been lurking on this site for quite a while and I've even seen examples of it on this site, autistic people saying that they're uncomfortable with things neurotypical users [parents etc] have said and the neurotypical person then responding by getting offended and talking over them and using emotional blackmail against the autistic person rather than listening and bettering themselves. I'm not going into specific occasions but I kind of just want to say that if a member of a minority group that you aren't a part of expresses they're not happy with something you've said then you should listen to them rather than getting defensive and making them look like the bad guys. You're the one with the privilege, even if you are close to someone who is autistic, you still aren't autistic yourself so you have allistic privilege. Rant over.

Hope you're all having a good week,

Scarlett Slight smile

Parents
  • I have never had any investment in the ND vs NT divide.

    My whole life, I wasn't autistic, until I was diagnosed. Up until that point, I thought a certain way, and I met very few people who thought about things the way I did. It was me vs everybody else. ND vs NT didn't exist for me until I exposed myself to the wonderful world of autism politics.

    I wanted to understand how I function so that I can interact with people better and be easier on myself, not so I can get angry about our differences. I've spent a lifetime doing that.

    Labels and names etc, by definition, categorise things. If we want a label, we become categorised. But we need categorisation so it is easier to research and understand things. Otherwise we have chaos.

    The difference is in the intention. If we choose to seek diagnosis, does it really matter who does it if the result is accurate? Although the assessment will be largely subjective anyway.

    Is it necessary for a person to be autistic to be able to see the signs of autism? I don't think so.

    Of course, they won't understand on an experiential level, but that doesn't mean they can't help us.

    Does a world class athletics coach need to be a world class athlete themselves? Of course not. They need to be able to assess the data in front of them and use that to bring out the skills of the athlete.

    The point of diagnosis is understanding, then we can move forward. I think too many people are dwelling on the past, too much guilt, too many grudges. The past can't be changed, people often can't be changed.

    But if we act like 'them', we become like 'them'.

    This is obvious to me but it seems like a common theme in many ND forums.

  • I can relate to some of this but to me it still matters.  I've always felt as though I was in a minority and to have this minority diagnosed with a "disorder" because it's not of the predominant neurotype feels wrong to me.

    And really i'd much rather have had the information to self identify at a much earlier stage rather than feeling dependent upon people with very little understanding.  The power imbalance did affect me.  And I didn't feel helped by them either.  

    That said, I'm not particularly fond of the term "neurotypical" either because, after all, who amongst us is typical?

    Overall though no, I don't want to create a divide but it felt to me as though I was somehow apart from others from the start.  I didn't realise that I was autistic, but, from the playground onwards, others had names for my difference.  Some of them weren't very pleasant ones either.  This continued into the workplace too.  I don't think I'm angry about being different, but I am angry about being misjudged and for this kind of misjudgement to feed into the diagnostic process.  

Reply
  • I can relate to some of this but to me it still matters.  I've always felt as though I was in a minority and to have this minority diagnosed with a "disorder" because it's not of the predominant neurotype feels wrong to me.

    And really i'd much rather have had the information to self identify at a much earlier stage rather than feeling dependent upon people with very little understanding.  The power imbalance did affect me.  And I didn't feel helped by them either.  

    That said, I'm not particularly fond of the term "neurotypical" either because, after all, who amongst us is typical?

    Overall though no, I don't want to create a divide but it felt to me as though I was somehow apart from others from the start.  I didn't realise that I was autistic, but, from the playground onwards, others had names for my difference.  Some of them weren't very pleasant ones either.  This continued into the workplace too.  I don't think I'm angry about being different, but I am angry about being misjudged and for this kind of misjudgement to feed into the diagnostic process.  

Children
  • Duno about tollerance as tollerance feeds wokeness but acceptance I guess. Not being classified as a mental retardation would be nice 

  • I'm doing well thank you.  I still don't use some of the features in Discord, but I do enjoy it.

  • It's a nice group. It's an open chat between people. It's very supportive.

  • I'd rather not. I don't like private messages, I leave it turned off. I have had so many bad experiences with private messages, I leave it turned off now everywhere if possible. Sorry.

  • you can do it in the browser as well

  • I've asked aidie to message you the details - you just download an app and you can chat to us.

  • i need to message you the details kikicat

  • Well, hopefully I won't be here much longer then. And people were definitely more understanding in times gone by, now they are just jealous and 'my life's worse than yours wah wah wah wah'. I see lovely groups of people who live/work together, all supportive and friendly. That's all I want: a nice group of friends/ family. It's not much to ask.

    Secondly, I do have evidence that people are getting worse. I've been in contact with friends from past years recently. Either they've contacted me or I've contacted them. Almost without exception they are less friendly, more offended, more touchy, even quite strange. I suppose it could be me that's changed but I definitely see more strange sides to old friends now. I don't remember them being so easily offended, or so jealous, or so unpredictable, for example. What is happening to people? Sooo many examples of friends I used to really like, yet when I get back in touch, they've changed for the worse. I could give you so many weird examples.

    I have a theory however that maybe they preferred the single, screw up Kikicat, who got everything wrong, was always in a mess, never had a boyfriend etc. When they find I'm now happily married with a daughter, maybe they don't like it. Maybe they don't look so good in comparison to me now? Hm...

  • Kiki, you only have to take a look at history to know that humans are the same as they have always been. No better or no worse.  Intolerance, cruelty, ignorance and general stupidity are just as widespread as at any other time in our history. It's just that technology has enabled us to record every instance of insanity around the world, as it happens, and then broadcast it on a loop to every home and every device. This makes it feel as if things are worse. 

  • Hello, Former Member It's nice to hear from you. How are you keeping? I tried the discord server thing, but I found it too confusing to use. I'm old and my brain doesn't work fast enough.

  • Join BJS' Discord server - I think he's already invited you.  We will be there for you.

  • There will be empathic, understanding people out there, be assured, although I understand the difficulty in finding them and, of course, getting yourself out there can feel like a considerable risk in itself.

    When the hard-faced world gets to me I tend to seek sanctuary with my plants, garden, walking in nature etc - just to reset and calm my mind and blow all the repetitive thoughts about such people out of my mind.  Not sure whether you'd find this helpful but there might be something similar which absorbs you and would give you some much needed breathing space.

    Plus, as BJS has already said, we are here and listening.       

  • i know its not the same but we are here to chat with you

  • Cinderella's Stepsisters. Disappointed

  • I dunno. I'm just tired of struggling on, excluded, lonely, disliked, mocked. Where are the nice people these days? All I want is a few friends to chat with in real life. That's not much to ask, is it? Just a few friends who like to chat. They can support me and I can support them. Just a few friends. That's all.

  • You might well be right. And even if that is the case, the onus is still on everyone to try to be understanding and caring, through dialogue, and action.

    I think I've got by in this world but ignoring and disregarding a lot of stuff, and trying to be pragmatic. But I'm sure the people around me would totally disagree. I always thought of myself as calm and handling stress well. The reality is, I'm not and I handle stress poorly. I just want to be calm and handle stress well.

    I hope your current concerns resolve themselves quickly (I did see your other post, but have no useful input for that particular situation).

    Try to remember though, life is what happens to us, but it doesn't necessarily define us.

    Keep on keeping on.

  • Maybe most humans are the same as you, maybe most of them are autistic and unable to empathise. That would explain a lot.

    I certainly can't cope much longer. There doesn't seem to be any point in living tbh. It's just a bunch of uncaring people treating me like sh1t.

  • The thing is, I have very poor empathy, I think. I don't really understand what it is, no matter how much I've read and tried to understand.

    Apart from my partner and children, people don't really exist in my mind, they are just things (figuratively speaking). There is no emotional connection at all.

    It feels like I literally don't care, but I do, well maybe not. I just don't know.

    But I do want to help people, so I have to logic my way around it. But I have never found a way to put myself in other people's shoes.

    This is very hard for people to understand, especially when they want empathy or compassion, or whatever it's called, but I give them a blunt insensitive viewpoint instead. 

    I can come across as intolerant. I think it's that I find thinking about other people's issues so draining that it makes me very irritable, because I can't empathise well.

  • More understanding and tolerance is what society as a whole would benefit from.

    You have summed it up there! People need to realise: just because THEY aren't having a problem with something, it doesn't mean OTHER PEOPLE aren't.

    Empathy is declining severely these days.