Autism & Late Diagnosis: Unmasking, Engagement, & Auditory Processing

Autism & Late Diagnosis: Unmasking, Engagement, & Auditory Processing


so I want to talk about and share an
experience I had recently because it’s given me some good perspective and
things to talk about and I’m curious if anyone kind of relates or as noticed
this or feels the same way so I generally, you know, if I’m gonna go to a
restaurant or something – I don’t often I eat at home
better food more control over the food you know better environment
noisy restaurants just are not typically enjoyable for me and there are a few
reasons for that I find that it’s very difficult and takes a lot of work but
I’m not impossible to pick words in conversation out in an environment that
has a lot of background noise and if it’s loud enough you know it can get to
the point where sometimes I just can not hear words it’s like (nonsense and sound cutting out) there’s like all this stuff I’m just missing and I can’t filter just
amongst the background noise at the restaurant um and my experience in the
past, you know, has been like, you know, for work going to like happy hour where it’s
very professional where you know I felt like I needed to really just be very
still and be very attentive and do the whole, you know, looks – look at the person
in the face and all of that so that that’s like the proper way you do things
in the work world it’s it’s like official you know it’s it’s just you
know it’s masking actually but it’s it’s just the way it is and so today I was
meeting at a very busy restaurant during lunchtime and I was with three
individuals who know I’m autistic because I am
sitting with people on the board of a charity I sit on – life found- uh – NeuroGuides
so to give them a plug because they’re awesome so I was sitting you know with
people from this group and it’s really loud and so you know normally in a
business setting like I make myself sit still and it’s a lot of work to like in
focus on being still and making sure I look like I’m attentive to the people in
front of me and the restaurant is so loud like I just naturally kind of start
swaying and as I’m listening you know to filter out I’m kind of him looking down
this way towards the floor and I’m kind of closing my eyes and listening and
tilting my ear towards the person instead instead of trying to you know
act like I’m looking at the face it’s like I actually was like it it was more
efficient and this isn’t something I usually would do I would normally play
the role I guess and I wouldn’t you act like I don’t know what you know it’s
just different like an eye and so the entire thing it’s like normally at the
end of something like that like I feel like I would feel really exhausted like
sitting at a table with three people trying to listen to conversations in a
very busy loud restaurant for an hour and I actually you know I sat and rocked
and moved and tap my foot mm you know sat like this and listened a lot and
did this and just kind of listened and I was able to hear better I was ever able
to engage in the conversation more I was able to focus and it was just so much it
was just a much more positive experience I was relaxed I wasn’t fighting against
myself you know my body was naturally moving and you know I would alternate
between just the kind of rocking and gently rocking and maybe you know doing
some things my hands but I stayed moving the whole time and I just didn’t fight
myself to be still and I just feel so much better than I
normally would after social engagement right now and this video is just so rambly
because I’m just like oh my gosh but just being able to move it’s just just
so essential and so I was just really paying attention to this because I was
just comfortable and I wasn’t holding back and trying to be still be adult
looking and it was just really good and I think I don’t want to spend time with
people that need me to be still and put on me the whole eye contact show like
really you know I don’t mind doing it because it’s it’s it it helps with
communication like looking towards someone’s face so that they know you’re
engaged but like in that really loud environment if I would have been looking
at people’s faces I would have been fake engaged I wouldn’t really be engaged
because I would not be able to hear you know it’s like I have my head down I’m
looking and I’m listening and if I’m processing I’m actually like
I was actually really processing and hearing the whole conversation in
aloud space I’m just amazed right now and I feel like the motion in the
movement it’s hard to put into words how much that really helped me is just being
in motion being in movement and maybe that’s because like I wasn’t wasting
mental energy telling myself in my head to sit still and be still you know I’m
not you know I am this just happened so I’m still thinking about it I’m still
processing it I’m still trying to put it to words but I just feel like I had this
amazing moment you know where I just wasn’t the fighting against myself and
it’s even in the situation that normally wouldn’t enjoy I had a great time and so
those are my thoughts um anyway let me know if you have thoughts on this or if
you can relate or if you’ve been in a similar situation I would love to learn
more give me a thumbs up if you like this video and I will try to do more
similar content trying to pick up on the patterns to see what you guys like what
you want to hear about what types of videos interest you what doesn’t and if
you found this video helpful please hit the share button so that someone else
who might need to hear this information can hear it I literally just almost
drooled all over the place that one that would’ve been really cute right uh-huh
anyway guys thank you so much I put up new videos every Wednesday I will talk
to you next week – BYE!

17 comments / Add your comment below

  1. Sometimes masking is exhausting. But i dont like attention brought my way and i dont tell a whole lot of ppl that in autistic

  2. Thats awesome, Im glad that you were able to have such a freeing experience, and not be forced to mask! cus it can be so draining

  3. Happy you had a better experience socializing in good company! Your story made me think about how so much classroom time is wasted trying to keep students still. Movement can actually help the learning process and boost student engagement, so it makes sense it helped socially. Think I might test this strategy for myself and today's a good day for it!

  4. I think of it as a caffeteria effect. It's the reason I did go to school lunch room. It's the reason I hated highschool and for many months did school avoidance. It's the reason I don't like my current work environment with 4 people on team in a small shack, it's reason for all my troubles really, I need a regulated or tiny group. Preferable two, or maybe 3 , with one being a small child for restraunt to work best for me.

  5. The feedback I get is so confusing. I mask so thoroughly and so completely that I rarely look autistic, though none of the few people outside immediate family have been surprised when I told them either. My cousin expressed it by saying it was not something she would have ever thought about me and it also makes perfect sense. If I accidentally slip, often through exhaustion these days, I'm told I'm not acting like myself. They can tell I'm off. When people describe what they are seeing to me, most of it is stuff I normally mask. They are actually seeing more of "me" than I normally permit. I've noticed when I've tried to devote my attention to being more engaged in stressful environments or intense emotional setting by trying to focus on what's being said than on what I'm doing and I naturally fall into the more autistic patterns like the ones you describe, people either think I'm not paying attention or that I'm trying to "look more autistic". When I describe even a fraction of what I do know normally, I'm told I shouldn't do that. It sounds exhausting. When I don't do it, I get feedback that I'm doing something wrong. I feel damned if I do and damned if I don't most of the time.

  6. I can relate to this so much. I find loud, busy spaces so hard, sometimes I can mask sometimes I can't. I personally find that eye contact is harmful to communication because I am concentrating so hard on making the right type of eye contact that I miss what's being said, even in a quiet space.

  7. Thank you so much for this video, and your youtube channel. I was diagnosed at 25, mostly due to my nephew getting an ASD diagnosis, and everyone remarked that his behaviour was so like mine as a child. The diagnosis validated so much of my experience as a child, and made me realise that there wasn't anything wrong with me, I was just different, and there was a reason for it. There are days where I'm better able to mask, and then there are days where I don't make eye contact and I do very subtle stims as I'm talking to people. I'm sure that they think I'm being rude, but it genuinely helps me focus. I can do eye contact when I'm with someone I really trust and care about, but with work colleagues, it's more difficult, because I work in a challenging environment (mental health – I felt like I could give something back to my community).
    Your channel helps me realise that yes, these actions (not maintaining eye contact when engaging with people, movement, etc.) actually help me engage better. I am so glad that you're putting these videos out, and I hope that more people watch them, and realise what autism is, and what autism is not.

  8. Not rambley at all. Good Job, and while I've never been a server, I identify ! Eye contact is a barrier when words are involved. Drool if ye must lol 💚

  9. Thank you for this. I cup my ears to try and hear people; as I'm older I just blame it on age. At first, I though it was my hearing, so I had it tested … totally fine. The hearing doctor said that some people just have certain 'personalities' that make it difficult for them to hear people in loud environments. In retrospect, this comment pisses me off because it reminds me of the countless times doctors had a clue that there might be some other diagnosis, e.g. ASD, but they're disincentivized to flag these clues for further investigation … yes, I'm looking at you Kaiser Permenente. Anyway, after the IBS, GAD, OCD diagnoses over the decades, videos like this just make so much more sense. My brain just isn't wired to hear people in a restaurant, but I don't have to feel bad about it 8)

    So, thanks.

  10. So nice to hear your story, I can see how nice it was for you to be yourself and freely enjoy what would have otherwise been a very stressful situation. I think we need to remind ourselves we have the right to rock, fidget or whatever makes life easier. Personally I’m a leg rocker / hair fiddler and toe walker I used to suppress all these, until I found out I was autistic and well now I’ve let rip lol
    Great video 👍

  11. I relate, 100%. In 2018/19 I worked in a noisy former warehouse building under harsh fluorescent lights. Loud music, conversations going on around me by other agents and the people they were assisting. I chose to stand all day because sitting was torment. I tried everything to process what people were telling me, including reading lips. On top of this, many would talk "at" me instead of to me, rattling off fast lists of this issue to that.
    I finally began telling people to slow down. It was at this job, however, that the light bulb went on! That was some time in March. I gave it my best but was terminated in April.
    Unemployed for the next three months, but did very satisfying campaign remote volunteer work.
    I applied at several places where I could just walk to work, and just left a job after 2 months. Public facing, music, espresso machines operating, ovens beeping. Too much! Customer's drink orders at the register sounded like the teacher on Charlie Brown specials. wah wah wah wah.
    Certain portions of your videos cause me to fall apart. It's like listening to someone discussing me.
    Thank you! 💜

  12. What!!! This is amazing I am newly diagnosed age 40 and heading to Thanksgiving. Prayed to God to help me understand what makes me different and how to explain to others. Then I randomly find this and it’s so clear and not to long. Delighted to share later and I don’t even have to look at them to do it :). Blessings sweet soul

  13. I go to karaoke allot and I dance in my chair, I sing in my chair, when I stand in line for a drink I can't help but move and I can't stand still in lines in general…It all let's me Stim and just look like I like the music…which II really really do, except for maybe when I am in line I might look "different" than others who can stand up still, but that's cause people are walking all around me and loud and I'm not sure which way they may walk, so Stiming feels natural there cause ALLOT is going on…Loud people, dancE floor or bright lights, trying to suss out the different, individual noises and conversations…So, it's great to have a place to naturally Stim and let my body regulate as much as possible a busy environment around me and just look like I'm having fun, which II totally am, cause I. Love music…

    I explain. Sensory Processing Disorder as the fact that personally, I notice EVERYTHING and every sense ALL THE TIIME and we generally think there are 5 senses (smell, taste, touch, sight, hearing)…but there are also 2 other senses (vestibular…The sense of where your body is in the environment and balance and how to move around in the environment…ANDthe Proprioceptive…The internal body sense that regulates things like organs and the circulatory system, pretty much all internal body systems)…so yeah, that's allot of senses to notice all the time…no wonder I need to move and Stim and release the enery and sensations from all these senses everywhere, all the time…

    The only time I don't notice some of these senses is when there is too much external stimuli and my body starts "shutting off" (as I call it)…some senses so I don't overload my senses too much…But normally my body tends to go until it crashes and then it can take days to recouperate or get to a "functional" level again…Fun times! 😝🤣😋

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