Communication struggles - its so hard!

nidriks said:

It's why I love the theory that autism evolved as a defence for prehistoric tribes.

this is a controversial theory. I have difficulty with reverse-engineering biological theories working with no or partial evidence. For me, the trouble with this one is that it concentrates on accounting for sensory differences, which form a minor part of autism. As the major part relates to difficulties in social communication, it would have account for the social effects and any benefits of those, which create social isolation within the group.

I wonder whether this links to that talking over/interrupting thing I try harder now not to do, though work with apparently NTs who do it _all_ the time...

So often you can work out the point within seconds of someone starting their response based on their body language/opening words.

I'm impatient and like to work fast (not enough time to do the jobs I have to) so can be terrible for going onto the next bit... I'm also accurate most of the time, and those who know me well used to just add any extra bits I hadn't considered in the 2 or so seconds I had to work out what they were about to say!

I don't know how true this is, but I was told that it can be interpreted as what you see too. I mean, for example, at work I will spot things much more easily than others. I work in retail and will quickly spot when the wrong item is on a presorted cage. A colleague will say "how did you spot that so fast?". Or things like wildlife when I'm out and about. I'll spot well hidden lizards on a wall or birds moving in the undergrowth.

I'm thinking the gist of the question is that us neurodivergent types are spotting what's all around us. We're attentive to the world when your average neurotypical is much more attuned to being social.

It's why I love the theory that autism evolved as a defence for prehistoric tribes. The autistic tribe member was the lookout; the person that spotted the hidden dangers or the smells of their landscape.

Yeah, I've done a deep dive since I started considering autism! I've become fascinated in the subject and why autism exists.

That is a great place to be.  

Oscar said:

However, taking all that into account, it does feel wonderful to be “officially” autistic and know who I am.

Heh, my initial reaction was to realise that all those people who said that a diagnosis doesn't bring relief from imposter syndrome were right.   I think I'm now in the stage of learning to accept it and living my life with this new knowledge.

Goldfinch said:

I remain worried about the next steps during the diagnosis stage though, I struggle to articulate feelings well and like you I worry I’ll end up being passed over purely braces of this and my ability to effectively mask that I’ve build over the past 40 years. 

So did I, but I found the psychologist amazingly helpful whenever I was baffled. I said to her early on that It's difficult to de-mask after a lifetime. In the end, all we can do is answer as honestly as we can and try to remember that they have seen hundreds of different cases and can spot the signs in your responses.

nidriks said:

I've been told the questions in the tests are ambiguous. I mean, "I often notice sounds when others do not".

That one threw me, too. I think it might be better phrased along the lines of "do sounds bother you more than they seem to bother others?" I had my diagnosis yesterday and the (private, older-women-friendly psychologist explained after we went through the senory stuff that neurotypicals zone such stuff out after a short while and don't notice it. I had no idea people did this! 

I have only just received my assessment and can appreciate some of  your feelings. Mine was the ADOS assessment which I believe is a standardised assessment, as it follows a procedure. And yes, it probably seems odd having something standardised for autism, which is so variable from person to person. Of course, a formal diagnosis is only an option and some are happy to be self-diagnosed.

It took me a year to fill the form in! This included 4 month period when I completely gave up the idea of having an assessment.

The is that the ADOS assessment, for example is not like  a school  exam or  a test or even a quiz.  I found it more like a tutorial. There isn't a right or wrong answer just your answer. The assessors are seeking certain information to address specific criteria and they would ask a question in a different way if I didn't understand. They picked up on a lot of behaviours that I couldn't even recall doing. So, you do not need to know how to answer the questions; you are the answers!  Like, if someone asks do you like marmite? You don't need to look on Google, because you are your answer.   

I found the whole process not so much daunting but quite exciting. I simply answered the questions with an openness, that is probably quite typical of autism.

However, taking all that into account, it does feel wonderful to be “officially” autistic and know who I am. It is like opening the curtains on a dark room to find a world you never knew was there. The problem is that with any change there is usually some disruption. It has taken a handful of months for me to come to terms  with my assessment. I am still discovering.  

I think I misunderstood your post when I first replied. I took it to mean the RTC process is confusing, but you're worried about what they'll ask you and how to put yourself across, if I'm correct.

I did find the whole RTC process infuriatingly confusing. Being presented with 20+ options for assessment is overwhelming for someone like me, that struggles to choose from 3 sandwiches! It was the availability of help that annoyed me. Nobody would answer me when I asked for help.

I turned to AI. I'd already used AI to map my traits. I just fed in memories and AI gave me a list of how they fit in to the DSM criteria. That got sent to Clinical Partners.

The problem is I've used AI too much since and I've come to realise I got a bit addicted to it. It answers me. It reassures me. It gives me a hit of dopamine every time it does either of those. Because it's often so hard to find someone to talk to, and because AI gave me that "person". So, if you do use AI use it sparingly.

I've been told the questions in the tests are ambiguous. I mean, "I often notice sounds when others do not". I don't know about you but I thought how could I know if others don't hear that sound.

I'm no expert, but I think the proof of the pudding is in what you're asked at the assessment. These people are highly trained experts and they'll get so much from how you act at your assessment, what you say.

I wish you the best of luck. 

Ha, mines on my phone too and will be tied into some kind of format as and when I get the call. The process has been useful for me too as it happens. 

Please don't tell me it _has_ to be in excel format though - I'm terrible at Excel and would probably incorporate that into my controlling set of personal rules. (I'm joking - autism though innit!)

Indeed, and I’ve already started preparing a list of statements of things that I struggle with “I struggle with loud environments”, “I become overwhelmed when I have to deal with multiple tasks” etc. 

These are helping me to have my own clarity of though, but I’m hoping will form useful conversation starters when the time for diagnosis or any form of therapy comes rather than than relying on anything to organically start. 
it will also help me to remember if I’ve missed anything.

I’ve started them in the notes section of my phone so I can add to them as things come up when I’m out and about, but will eventually put them into a spreadsheet and put them in rank order and likely colour code, because, you know, autism ;-) 

Also, it's the assessors job to listen and assess, so I'm going to put forward everything I can to help them and, if they get frustrated by time/my approach, in that situation I won't be perturbed (and can forward it in text format too!)... I believe that is the one situation where it is my right to be heard, so hear me they will! 

I worry about this too - my 'solution' is, like Goldfinch, lists - I've started a log of all the things I've discovered about myself in relation to ASD and will offer it up or reel it off in the appointment.

Given those and my previous notes I don't think there is any chance I won't get a diagnosis. 

I am on a waiting list for a diagnosis, and this is the thing that worries me the most. 
The initial chat with my GP was fine, as there was very little she asked and I backed myself up with some print outs of various tests which I found really useful. She took one look at my extensive list of online tests and score thresholds mapped onto a chart that I made it almost impossible not to refer me! Haha

I remain worried about the next steps during the diagnosis stage though, I struggle to articulate feelings well and like you I worry I’ll end up being passed over purely braces of this and my ability to effectively mask that I’ve build over the past 40 years. 
you have to remember though, whoever does your diagnosis is highly trained, experienced, and will have done this hundreds of times likely with cases far more extreme than yours. They will have the skills to put you at ease and tease out the detail that they need from you. 
Wishing you the best of luck.

Dear missnjport,

I know many of the community will be able to relate to the difficulties when seeking an autism diagnosis. It can sometimes help to write down some of your feelings to share with your medical team as they may be able to offer reassurance or support. 

I thought I would share some resources that may help:

• Deciding whether to seek an autism assessment
• How to request an autism assessment
• What happens during an autism assessment
• Autism and communication - this has some helpful advice on how to self-manage some of the common difficulties faced by autistic people.

I hope some of this is helpful, please reach out if you need any advice or support.

Take care,

Olivia Mod