Autism & Late Diagnosis: I Wish I’d Known – Sensory Processing


hi guys so I’m bundled because it’s 71
degrees and for most people that wouldn’t be cold – and yes 71 Fahrenheit –
but for me that’s cold so I am like all bundled up as I’m trying to enjoy the
weather because before too long winter will be here and I won’t be able to go
outside for any amount of time for very long cuz I am a wimp – anyway, um, so, I
asked a question on Twitter recently and to read it exactly word for word I asked
the asking autistics hashtag actually autistic hashtags “what is the
one thing you wish you had known when you first discovered you were autistic?”
and there have been you know about about 300 comments we might have gone above
300 comments by now on that of people just kind of sharing their experience
about what they wish they had known when they first discovered that they were
autistic and there’s some really great comments there and so there’s a link to
that Twitter thread on my blog neurodivergentrebel.com if you want
to check out and comment but I thought I would make a video and share my own so
the thing I wish I had known at the beginning and I guess you know I don’t
think I could have known because it really took experience and new knowledge
to really understand all of this would be sensory processing differences and
how much of an impact sensory processing differences have on me day to day before
I really understood sensory issues I just thought that I had chronic
headaches and chronic nausea because I didn’t understand that things like lighting could have an
impact on me I didn’t know that fluorescent lighting literally would
give will give me a migraine within 5 or 6 hours if not sooner you know I didn’t
understand that if I go outside and squint too long like I knew it was
painful but I didn’t – I – I could get through the pain and I but I didn’t understand
you know the lasting impact that would have on my health and you know what that
was really doing to me because I’d never heard of sensory processing differences
or sensory processing disorder I’d never heard of that
you know before so I had no idea and since you know learning about how how I
have a lighting sensitivity and then learning to protect my senses from
lights that trigger and irritate them has been really life-changing because I
very rarely have headaches now I did have one recently and it was horrible
and I also you know I’m not nauseous hardly ever anymore now and you know a
lot of times like doctors trying to do things with foods – and it wasn’t
really a food thing it was more of a neurological thing so that wasn’t really
helping like switching all these foods although there are some foods that
really irritate my stomach gluten is one of them and a few other
things sugar really doesn’t sit well with me
but since I’ve started you know taking care of my senses and really minding my
sensory needs just my health overall has just improved I feel so much healthier I
feel so much better and I just wish I knew I could feel this healthy you know
most of the time I sleep better even so my life is just better now that I
understand since we processing and you know like if I’m gonna go into
(as store) it instead of squinting in the light I’m gonna wear you know shades that block
the light you know – I – I understand now what you know sensory overload is and
you know I have experienced that usually like I for example I had a migraine and
it was the point where every sound I heard or like anytime I like light in my
eyes like I couldn’t look at my phone screen for very long because it was just
physically just so painful and it was I at one point was like am i dying I’m in
so much pain I has the most pain I’ve ever been in from that in my life but I
know you know it was like too much input for my senses so now it’s like I know
okay well I just need to shut my senses down for a while I need to stop letting
anything else go in there and close my eyes and lay down and be in the dark and
relax and and I know to soothe my senses to help them relax that if something
like that has been triggered but I didn’t know that for a long time the
same thing you know with my stomach you know I had when I would have a lot of
stomach problems I just kind of thought felt nauseous a lot but it was just
because you know I was I would get a little bit of is it called vertigo it
when you’re kind of like you feel like everything’s moving a little bit
everything’s a little spinning it’ll feel a little dizzy it makes you kind of
like I don’t drink but like when you’re drunk and everything spins a little bit
it makes you feel like you’re gonna toss your cookies that’s why I don’t drink I
get that really bad really quickly if I drink so I just don’t but so you know
when I’m worn out or when I’m really tired or where I’m not well rested I get
that feeling and it’s a very it’s kind of a sensory thing and it can you know
if I’m feeling that way sounds can really make me nauseous and smell I can
get to the point where smells that don’t normally bother me will make me really
nauseous and then my sensory system kind of gets heightened and I’ve noticed
that you know that just kind of happens to me if I’m sick or you know not
well-rested and so I’ve also learned the things that trigger me and the things that’s the bus – you hear the bus? it’s
really loud it’s letting the air out – I now know you know the things that
trigger you know me and the things I need to avoid and I I’m able to take
better care of myself so I wish I knew all of that but I really I couldn’t
learn it until I had the new lens and I had you know the terms and I had like
researched and understood since we processing and just sensory overload
but so I guess that would be something that I would encourage people who are
newly discovered to look into and to understand just how that affects them
because just understanding that and having that information has been really
life-changing and very empowering for me so anyway guys those are that’s just my
thoughts and my thing I wish I had known on the beginning of my discovery journey
long ago – and if you have your own comments you know – what what do you wish
you had known it was just starting out? let me know in the thread below because
I’m really loving this conversation we can keep this going and you want to
check it out here on Twitter I’ll put a link to that as well – thank you guys
anyway I’ll talk next week – bye

16 thoughts on “Autism & Late Diagnosis: I Wish I’d Known – Sensory Processing

  • Hi NR, a really long shot, I'm an old Aspie and spent most my life being cold, even in the height of summer. Then about ten years ago I found I had gluten/seed sensitivity (not Crohns) that's very common, and took it all out of my diet (it must be all, I tried having less, but it didn't work). Three weeks later, warm, and I've been warm ever since.
    The other thing is that about 24% of people also get mental effects eating gluten, etc. inlcuding me, and it will usually bring about mental fatigue half an hour later, and usually depression for most of the following day. It also increases my 'aspie'-ness in some ways and affects my character and makes me more short tempered. The thing is that there are tens of people like me (though not necessarily Aspie) who are affected in the same way without them realising. I hope this DOES help, it's a pain feeling cold and like a dried up leaf all the time. Good luck:)

  • Great video! I listen every Wednesday while taking my son to ot and speech! When your bus made that noise though I seriously thought my car was blowing up!

  • Speaking of lighting, you look great in that lighting. It seems like females do have more sensory issues that never go away. Though overall they have less autistic symptoms. I only have the social/noise sensitivity.

  • SPD is also what I wish I knew more about early. I mean, I was already coping with sunglasses (or squinting when I didn't have any), headphones/music, and avoiding strong smelling places, but I didn't realize why, or that it was so draining. It presents more as depression and anxiety than fatigue, and hasn't been a major issue since I dropped out of university, with its fluorescent lighting everywhere, for mental health reasons

  • The things I wish I had known about autism when I was young are the things that have led to where I am now. I never got a decent tutoring of how to manage my disability because I was written off as incapable by the state. I ended up becoming psychologically damaged and unable to set a direction in what to do with my life. Now I am struggling to make something of myself because everywhere I go I feel like someone puts obstacles in my path.

  • I've only watched the first 30 seconds and it's already helpful. I was beginning to realize that the reason I am so cold all the time (am now wearing an outdoor jacket in my own house) is because of my sensory issues. But when I looked up sensory issues, I found nothing on being cold! I know I have sensory issues with sound and have known that for a long time but am only beginning to realize that the sensitivity to cold is part of that. Also – I knew I had sensory issues 20 years ago and yet still had no clue it was related to autism! Crazy!

  • I wish I had known that it was the reason I had trouble making a living (not to mention making friends and dating and life). I'm smart and have good skills, so why wouldn't anyone hire me? Yet I've struggled for decades when I should have had a good career. And so I have several jobs, which are hard to juggle, and I'm not making enough money, and all the anxiety that goes along with that. So I'm a little angry that nobody noticed this over the decades, including psychiatrists I visited because I suspected ADD. They should have at least picked up that I had executive functioning issues and encouraged me to get neuropsych testing. I finally had that done last month and will get a diagnosis next week (was supposed to be today – frustrating to wait so long). Even if they say it is not autism, I will know that it's neurological. It all just makes too much sense now.

  • A general question to all Aspies, I'm intrigued: I've just read a New Scientist article about the feeling of 'awe' , and its place in our emotional makeup. I have never personally fet it, and neither has my Aspie nephew. Does anyone else not get it?

  • I agree. I have those glasses that filter out light. They are dark blue and I rarely have headaches anymore. I call them my Bono glasses. Also, every night tfor about a year straight I lights dozens of candles. Most people struggle to realize that I need very little light in order to see clearly. It's.blessing and a curse. But Yay sunglasses and filtered lenses

  • I totally relate to you. I feel really nauseous when I smell certain things and I also get startled by noise very easily. I also see to read better in very little light. My parents are like, “Let’s turn on some more lights.” And I’m like, “NO!” I’m cold most of the time, even when most people around me are hot. My sensory pressure vest helps to regulate my body temperature so I wear it most of the time.

  • I was diagnosed with Irlens syndrome so have prescribed blue tinted glasses for reading and a non prescription blue pair for just walking around, musician grade noise earplugs…which help a lot. These two items make dealing with life easier…

  • Oh wow, I get that when I am tired too. I didn't know it was a sensory processing thing, all I knew is that the world was louder, brighter, smellier and more nauseating when I was tired. I too suffer a lot of nausea and vertigo type stuff. I really need to sit down and research this stuff and discover how to avoid it.

  • After my diagnosis it all became clear. I entered the fortress of solitude, Stripped off my old life, and flew free. I became the new super hero that I am now..
    .

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