Communication difficulties and different autistic profiles

On the Random Thoughts thread I said that I often don't feel like I belong here and many of you were kind enough to tell me my contributions to discussion are valued, but I think one of the reasons I don't feel I belong is that autism manifests differently in me to how it does in most others.

Many people here seem to AUHD, whereas I'm a Liminal Austic Thinker, this means I like to inhabit the grey areas of life, rather than the black and white of Binary Thinkers, or the fact driven thought processes of Analytical Thinkers or the High Energy, rapid paced emotional short hand loving AUDH people.

This difference in cognitive style makes it hard for us all to communicate easily, it's why I don't get emojis and others love them and are quite happy to post long streams of them that mean loads to those of the same cognitive type, where as I just look at them and think Eh? Of course not being able to see them properly even with my glasses dosen't help either. I need a longer form of commuication, not short forms of text speak and emojis, especially when theres an emotional depth to what people are communicating, I don't understand memes either, probably because I don't inhabit the spaces that use them, but it's very difficult for those of us who aren't AUDH to always understand WTF people are on about.

I know I'm a deep thinker, who's uncomfortable with binary answers, choices and rules based thinking and black and white thinking in general, I guess some people read what I've posted and think 'WTF's she on about now, I can't be bothered to read all that, why can she just say it with a meme and a couple of emojis?' I see patterns in a lot of things, the story behind the story, where things that seem very different are expression of a similar thing and sometimes the same thing, it's very rare for me to think in a straight line, to me the world is like a jigsaw where I can see the whole picture and at the same time move pieces around, this happens in different dimensions and levels too, nothing is vertical or flat and without texture.

Having had training in both counselling and a history degree has really taught me to ask questions of questions, to look under the surface of whats presented to me and to say the unpleasant, the deviant, the socially unexceptable, to name the game being played and ask others if they see the game too and do they really want to play it? This is uncomfortble for many people, but once I've seen something like that I can't unsee it, I can't not say what I see, people of a more binary type of thinking or an analytical type might look and think something like ' the ladders falling down, all the bits are on the floor, must deny the collapse and put the ladder back together'.

I think basically what I'm trying to say is that AUDH is the dominant type here and that why I often feel that I don't fit in, we literally see the world differently, through different lenses. But is it just me that feels like this? Can we make a bit more effort to be accomodating of different types? I wonder if other people come here and are put off because they don't feel reflected in what they read here how responses are framed?

I think theres also a danger that AUDH is seen as the only type or even the most common type of autism and all services end up geared towards AUDH and those of us who express differently are excluded again, are doubly stigmatised by an NT world that dosen't understand and dosen't really want to and an ND world thats seems largely AUDH and is just relieved to have finally been recognised. Included in this exclusion is those of us who don't cope well with the digital world, the dominant narrative being that autistic people don't like talking to others so if we do everything digitally then thats ok. So whilst you lots are happily chatting away using memes and emojis, theres others of us sitting down with a piece of paper, a fountain pen and ink from a bottle, trying to set down our thoughts.

  • Thank you   Yes, I would be likely to say I’m autistic rather than mentioning AUDHD or ADHD. Autism has created the most difficulties for me too. 

    It’s good that we can talk about it here.

  • I very much hope you won’t be dead If I’m telling anyone about my diagnosis I will tell them that I’m autistic because I feel that autism is what makes life difficult.

    This is a good thread because it opens up the conversation about how we are all different even though we share the same diagnosis, especially around capabilities that are expected and not necessarily in possession of.

  • I have read that around 30% to 50% of autistic people have ADHD but the figure may be higher. I don’t think the figure would necessarily be reflected in this online community, because the site may be more attractive for some autistic people but not others. I can understand how people with communication difficulties could potentially be helped or hindered here, but I can’t tell who has spent hours drafting their posts or who are happily chatting along. Maybe some people have agonised over their words for days. 

    I spent a long time drafting a response to CatWoman, but ended up not using much of it. I tend to do that quite a lot, so the idea that I’m a “rapid paced emotional short hand loving” person would be laughable if it weren’t such a serious topic. I’m wondering if the unofficial term AuDHD for autistic people who have ADHD is going to be as useful as first imagined. Some may think that we are less autistic than others so it may be better to say “I am autistic and I have ADHD”. I haven’t made my mind up about that and anyway for now, I have received only an ASD diagnosis and will probably be dead before my name makes it to the top of the stalled ADHD waiting list.

  • I am not familiar with those types of thinking that you have mentioned-I do know that there are some different groups for autism profiles though.

    .www.brainfacts.org/.../new-autism-subtypes-identified-based-on-genes-individual-traits-111125

    I am not AUHD. i think you were diagnosed earlier than some people on here. You should be more comfortable with your diagnosis. Although it shouldn't change you. This forum seems more aimed at those who are newly diagnosed. I like some deeper topics and lighter ones and you have been involved in both to. 

    This chart on this website may explain the differences between AUHD and autism-

    https://health.clevelandclinic.org/audhd

    Myself, I started being treated as autistic by the NHS in 2015 when they tested me in house-but was formally diagnosed six years later. So its been 11 years since I identified as autistic.

  • Im sad too about  thinking this way about AUDHD. I actually thought we were in the minority here and there were more autistic people. I am most certainly not happily chatting along, I really struggle at times to put words together and have them make some sort of sense. I don’t know if that’s lack of education or AUDHD.

  • I take very few photographs, even now that it is so easy. I prefer to inhabit the moment, rather than 'pickle it in aspic' for later consumption. I do quite like to see other people's photos in retrospect, however. I do not claim any purity of thought on the matter. Selfies, I have never understood; if I take a photo of the Colosseum, I take a photo of the Colosseum, not me in front of the Colosseum. I know what I look like and I do not own the building or the view, so have no proprietorial claim. 

  • Thanks for the further posts and replies.

    I've heard of Aud the Deep Minded and I agree I think us deep thinkers are deep minded, one of the many issues I've had with this is other peoples reactions to my thoughts, some of the things I loved about university were being around other deepminded people and being encouraged to think deeply.

    Thanks to NAS 79256, above I think I've got your ID right? And to Maja too, its good to know I'm not alone in the shadows and liminal spaces, maybe we'll bump into eachother one day? Lol.

    I think I too had concluded that nobody else really liked thinking, making connections from seemingly random threads across time and space, inner and outer. To me its all the Anglo-Saxon/Norse concept of The Wyrd, the warp and weft of the universe, multidimensional and wonderful, if we follow the strands we see what was and whats possible, how it all links what threads cross where and when and how strongly.

    I think we build deep mind spaces by not being embarassed to start posting them, obviously some will drop off the edge into nowhere and others might only be a couple of posts long, but the possibilities are there, if we choose to take them.

    I could have a rant about what I see as the evils of social media and the capabilites of mobile phones, I mean why go to a gig and watch it and film it on your phone? To me it totally defeats the object of going to see live music, its no wonder so many clubs and music venues are shutting down. Everything and everyone seems pigeon holed all thier likes and dislikes curated by algorthingies and fed more of the same, the gods forbid anyone should be challenged, to not agree seems to have morphed into abusing someones human rights. It makes everything so binary, free speech absolutism or taking responsibility to not abuse and deliberately provoke and hurt whilst still getting your point across. I think its created a world where we can no longer agree to disagree, where to not follow the dominant narrative is to be deviant and I use this word deliberately, to be deviant or to be seen that way is othering at one of its deepest, most insideous and dangerous ways, not just its other meaning, as not following the expeced norms.

  • Thank you for writing this.

    I have a diagnosis of autism, but I don't have ADHD so I am not AUDHD. My communication style is often so lengthy that mostly I do not attempt to reply due to the energy and time involved (I would not be able to think about anything else all morning/afternoon/evening/day) and when I do "reply" to posts, I generally write very lengthy replies which 99.9% of the time I don't actually ever post. So, I set down my thoughts, and then abandon them, never to be shared, and wonder why I ever even attempted it in the first place.

    I don't feel that I any longer belong in any of the autistic spaces or forums, either online or offline. There was a time that I sort of did, before my diagnosis actually, but these spaces seem (to me) to have changed in recent years. I feel increasingly isolated.

    The only support available to me after my diagnosis at the age of 42, a few years ago, was some local meet up social and "zoom" groups in my area. I didn't try the meet up groups but I tried the zoom group and found that all the other women were AuDHD and they connected and communicated really well, whereas I couldn't follow the pace, energy or content of their conversations. It was overwhelming. I said nothing, and felt so horribly as if I didn't belong that I never went back. It made me question my autism diagnosis as I thought "I am not like these people and these people are not like me, it must be something else which is "wrong" with me...".

    So yes, I feel, quite painfully at times, as though I do not belong in the "neurotypical" world and increasingly as if I also, most definitely, do not belong in the neurodivergent world. I am very much just in my own world and don't feel at all part of any group or "tribe" as people like to say now. The other recently diagnosed woman kept saying in the zoom group that they were so happy that they had "found their people". I haven't found mine, but maybe I don't want to and prefer being alone in that sense.

    I am grateful to you for your post. To say that contradicts my last sentence in some way doesn't it, but I do always seem to look for similarities, and I really like to be able to say or think "Oh, I think that/feel that too!".

    Also, memes have no meaning or appeal to me and I am often baffled by the meaning of emojis, especially now they have evolved to be so many of them!

    I actually wrote to the moderators here a couple of days ago, asking if there was a way to delete my account here if it would still be possible to see the posts about research opportunities. I really enjoy taking part in the research when I can, when they are relevant and when I don't fall outside the age cut off point, as I feel like it makes my experiences have some use other than just existing in my own mind, whereas despite the fact I keep checking and reading the posts here in the forum, it actually makes me feel more separate.

  • I have no ADHD traits, I'm more of the ruminative type. There was a woman, one-time Queen of Norse Dublin, who is mentioned as a matriarch and prominent ancestor in many Icelandic sagas, she was called Aud the Deep-minded. I think 'deep-minded' is a good description of my type of autism.

  • My semi flippant comment above about the ills of social media ... I think there's a likely correlation between the interface (chats with themes and sequential comments, mostly texted on a phone) and the type of content. If I am interested in something I wanna read multiple books on it, research it, think on it deeply, intensely, and extensively. And to find anyone even vaguely interested at a level I don't find lonely and superficial... That's a dream for me. So, guess my point is that I connect with your initial thread, I feel a comparable pain from the nature of chats online, I very much doubt you're alone in finding it such. Is a related question perhaps 'how and where to build that sort of meaningful depth?'

  • Ahh, then I indeed know that one. Thank you for clarifying. 

  • don't know that acronym AUDH

    It’s a typo. AuDHD refers to autistic people who also have ADHD. People aren’t diagnosed with that label. It’s just the preferred unofficial term for some people who have both conditions. 

  • That's such a valid post and point you make. (I don't know that acronym AUDH).

    Until getting my diagnosis and jointing the NAS charity and this forum I'd effectively avoided all forms of social media, popular media, online interactions, and so on, for the reasons that I find them shallow, lopsided, view seeking, etc. and therefore are at best dull and more often painfully simplistic and lacking in nuance. 

    Without suggesting we're similar, I do in my own way resonate with much of what you say. I too have a degree (philosophy) and find I spend longer contemplating things, nuances, the infinity of grey areas, than anyone I know. 

    Like I suspect many may find themselves: I'd kinda concluded that nobody is interested in the level of depth with which I tend to go into everything, and had restricted my nature as a defaultany decades ago due to negative feedback; whether the unstated but obvious micro gesture or the more overt put down.

    I'd always rather do stuff in person (aside from sensory burnout and overwhelm) and online communication is my fallback in absence of alternatives.

    (If anyone fancies a full scale rant on how I believe social media and much of the development of mobile communications has caused global plague levels of ills, let me know). 

    So, what you say resonates a lot. I struggle with it. Maybe I struggle in the same, similar or completely different ways to you, and most likely all three. 

  • Thank you for your replies, I wasn't trying to be critical of anyones expression of autism and definately not trying to say that one is more superior to another. I don't expect to relate to everyone, peoples interests are different and many people do things I cannot relate to at all. I think we all try and give helpful responses to problems or funny ones to more whimsical threads.

    To be honest I don't know what something geared towards me would look like, it wouldn't have emojis or text speak.

    The Audhd thing does seem to be a dominant type here, or maybe those are the people who post more? I don't know, it's not the fact that AUDHDer's are here and posting that bothers me, I just feel that those of us with less common profiles can feel a little excluded, especially in the digital realm. Whilst I agree that services for anyone with autism and especially adults are attrocious I have noticed that more and more rely on digital stuff and I've heard it said many times that 'everyone who's autistic are brilliant with computors' I know thats not true, anymore than everyone who's dyslexic is good at maths, but it seems to be a prevailing metanarative in the NT world and as they're pretty much in charge and hold the purse strings what they think is what we will get regardless.

    I supose for me I would like it if there were more people who inhabit liminal spaces, who see in shades of grey, I find black and white thinking really difficult to process its like being slapped in the face with a wet fish, I end up with a brain fart, not knowing what to say or feeling "shut up" by someones certainty that theres only one way to see things or experience the world and that to say otherwise could cause them to mentally explode with the power of an uncertainty. I don't want to inadvertantly give someone a melt down, because I don't just see a piece of material, but the warp and weft of the fabric too. 

  • Hi CatWoman, 

    Thank you for writing this post, I genuinely found this quite interesting. I certainly don't think that is just you.

    As we all know Autism isn't one flavour, and the way you're describing your thinking - long-form, non-linear, pattern-spotting, needing depth and space to work through ideas rather than quick exchanges, - is just as valid as any other cognitive style people bring here. If the general rhythm of the community has settled in a way that favours one type of processing over another, that's genuinely going to leave people out, even without anyone meaning to.

    Also, for what it's worth - this post is a great example of exactly the kind of contribution that's valuable here. It's not "too much," it's the depth some of us need space for.

    Please do not think that your contributions are not valued, on the contrary they are as important as any body else's within the community.

    All the best

  • From reading and occasionally participating in discussions here on the Community Forum, my eyes have been opened to just how many different types of neurodivergent experiences there are! But note the 'occasionally' in the previous sentence. I often end up muting someone's opening post, either because I can't relate to their experience, or I find it too upsetting to think about, or just don't have a meaningful response to give. I do try to offer helpful comments where and when I can, especially if I have experience of a shared problem.

    I don't know how prevalent ADHD is amongst the membership of this Forum, as to be honest I don't try to analyse people's conversation style too much. It does sound like something that a lot of folks get referred for either initially or after a diagnosis for ASD, but beyond that I've no clue. As a rule, I try my best to treat people here with respect and not take offence to how they may respond to me.

    Years ago, I went through an online version of the Myers-Briggs Personality Test and landed on being INFJ. At the time, it made total sense as I've always known I was introverted, and for a while I followed a lot of INFJ and MBTP-related groups and blogs. Eventually, though, I realised I was getting hung up on the label, and merely liking and sharing stuff online wasn't actually helping me. (I went through a similar journey with Atheism back in the 2000s, and in hindsight I think it was the same trap, of thinking that 'finding my tribe' was an end in itself. Oh, and of course I went through a cycle of being Very Online around the same time, which I've now weaned myself off of.)

    Perhaps because I've been a geek since the 1980s, thanks to home computers and later dial-up access to online services, I'm of a generation that understands and can use technology but haven't been immersed in it to the point of now knowing any other way? I've now scaled back my internet and device usage quite a bit, and only when or where it makes sense. I'm quite envious of those who are good with 'analogue' media, writing and drawing and such, as that's an ability that I've sadly lost of lot of. Hopefully one day I'll be able to do so again!

  • I personally think we need to stear clear of categorising each other too much. There is a saying that if you've met one autistic person, you've met one autistic person. Yes we have traits in common but we are all totally individual and have different strengths etc. Doesn't matter whether there is an ADHD diagnosis on top of that. One AuDHD person is not like another. Yes they share a few more traits. But ADHD varies vastly in the same way autism does. For some is externally obvious, for others it's massively internal.

    I agree. Stereotyping ADHD, as well as autism, isn’t helpful.

  • I don’t think I explicitly said (recently) that your contributions are valued, but they are. You may feel you don’t belong here, but to me, you do.

    I’m sad that you think that about AuDHD here. The use of emojis isn’t linked to AuDHD as far as I know, and there are variations in how ADHD in autistic people manifests. Sometimes I use emojis because they can express something that I can’t easily put into words, but I don’t identify with how you have characterised AuDHD.

    The NAS isn’t geared towards AuDHD. It’s primary role is to be supportive to Autistic people and their families.

    In what ways do you want people to be accommodating?

    The assumption that communication on this website is easy for others may not be correct because you won’t know the effort people are having to make to put down thoughts unless they say.

    I don’t always have the capacity to respond at all to you or to other people. I have my own struggles and just because I don’t explicitly say, it doesn’t mean I’m not struggling and don’t have the capacity to communicate in that moment.

  • I currently don't think there's any danger that AuDHD will become the over all type. Or that services will all end up being geared up for it. None of them are geared up for it - believe me, I've tried to find the support. 

    I am surprised you feel like it's the main type here. I would have said there was a variety. 

    I don't think it is just AuDHD people that like things digitally. You will find there are AuDHDers that like pen and paper and you will find people that only have an autism diagnosis that like things digitally. People also refer to this as a generational thing but again you will find older people that like tech and younger people that like pen and paper.

    I personally think we need to stear clear of categorising each other too much. There is a saying that if you've met one autistic person, you've met one autistic person. Yes we have traits in common but we are all totally individual and have different strengths etc. Doesn't matter whether there is an ADHD diagnosis on top of that. One AuDHD person is not like another. Yes they share a few more traits. But ADHD varies vastly in the same way autism does. For some is externally obvious, for others it's massively internal.

    What would making more of an effort to accommodate different types look like to you? I'm intrigued. I absolutely want to accommodate other people and would never want to make someone feel unwelcome here. I've spent enough of my life feeling like that. But this should also be a free space for me to talk about my own experiences and state my own opinions, which yes do come from being AuDHD because that is what I am. So how does somebody do both? Particularly, baring in mind that a lot of us struggle with awareness of how we come across and may misunderstand meaning in posts etc.

    It would be useful to know what would make you feel accommodated for. But also how you feel this could be done more widely. As what accommodates you will be totally different for somebody else.