Very relatable - I used to think my anxiety in shops, the bank, pharmacy etc was just my crippling social anxiety. Until I realised that my anxiety was actually being triggered by the fluorescent lighting. It’s staggering to think how many undiagnosed autistic people there must be out there.
"No amount of anti-anxiety medication can make their world quieter" - which is why I'm vehemently opposed to people just being given medication for anxiety (or anti-depressents) without going through more formal testing for autism & other conditions. It's not always "anxiety" or "depression", it could be something else.
Ah diagnosis. I finally self-diagnosed at 70 after recognizing myself in an article about parents who only realized they were autistic when their kids were diagnosed. Anything over 75 dB causes me physical pain in my ears. I love my noise-cancelling headphones.
My journey was similar - I recognized myself in video content by and about autistic women and then went down the rabbit hole of research from there. Thanks for sharing
Re the noise thing, even just *knowing* it’s a ‘thing’ makes it easier to cope with somehow. I was at a busy networking event earlier this week and couldn’t hear the person speaking to my group over the very noisy hubbub. So I nodded along and kept up with the general gist and didn’t stress about the fact that I couldn’t hear the detail.
YES. Also, I try to frame it in a way that I'm not the problem. "It is too loud in here to hear a conversation" instead of "I can't hear the conversation." Somehow the framing makes it feel like, the environment is the issue, not me. (Similar to "These clothes are not the right size for my body" vs "I am not the right size for my clothes.")
Women are definitely underrepresented compared to men but I as a male had the same experience and found neurodivergence literature well after the age of 45.
To even say my whole life changed would be a massive underestimation of the value that knowledge has afforded me.
Turns out, I’m not just a freak that continuously gets overwhelmed and loses it!
This was my experience, too. Once I had the understanding, it was so clear to me that it wasn’t anxiety (and yet my (then) psychiatrist kept going on about it; frustrating!). The distinction is so important!
My psychiatrist for years didn’t believe me once I knew for sure… but you have worked and are normal! (Then why am I even here and constantly suicidal and overwhelmed. He was convinced I simply had anxiety!)
Ignorance knows NO BOUNDS! This was the psychiatrist to the mental health system!
Thank you, yes the knowledge was the bridge that led to self acceptance of my limitations. And that’s totally fine I’m not like everyone else. But when you think you are same as everyone then clearly you are broken in some way, which of course is not true!
I recently just took myself off (with dr support) my anxiety meds. I started when my son was 2 (now 11). I started thinking over the years of getting him dx and seeing myself in him, my daughter getting a semi-adhd dx (don't get me started) that hey, my "anxiety" happens whether or not I am medicated and revolves around sensory overwhelm. When my son was 2 I couldn't very well leave him alone to go have some quiet. Now that he is older it's ok for me to find a quiet spot to re-center. It was a long detox but in the end I feel no different un medicated then I did while medicated. So I feel that kind of answers my question anxiety vs autism. Sorry for the book but I so resonate with this
Hi Melanie! I copied this by hand into my commonplace book. This blew my mind. I have always had to experience the world with my earphones in. I stopped doing so when my elders would comment about how it made me antisocial or seem rude. I was also told that I may just “get anxious in crowded places”. I’d experience meltdowns or shutdowns when I got home. I thought I wasn’t doing enough to take care of myself but I didn’t know what else to do.
I recently started using loops (noise-reducing earplugs) at work. It does help a little but honestly nothing works as well as noise-cancelling earphones for me. Being held and surrounded by music feels so good for me.
Thank you for sharing your experience. I’d like to try measuring the volume of my environment when I feel comfortable and when I start to feel uncomfortable. I don’t have an Apple Watch so maybe there’s an app or a small device. I never would have thought to do that!
I’ve had three different counselor/therapists tell me they think I’m autistic or possibly audhd. I have no insurance, and they couldn’t officially diagnose me because they aren’t trained in it. The nearest specialist is well over 2 hours away. I don’t tell people I have it but at this point I’m treating myself like I do. It’s a slow process.
It's such a long journey to self-discovery, but your self-idenrtification is welcome here!
I'm sorry you don't have more resources close by, but I wanted to suggest checking out LBee Health as they do virtual assessments for under $500. It's not nothing, but cheaper than a lot of other options out there.
My first inkling that something was odd about my sensory threshold was the overwhelming urge to run out of flourescently lit supermarkets, about 30 years ago. It all makes so much more sense when you understand your condition and its limitations. Then the next stage is to ask confidently for accommodations.
I can relate. I am 50 and extremely noise sensitive. I wear earphones to block out noise all the time, I can’t be in crowded noisy spaces too long….it makes me tired and I feel ill. I’ve always felt I’m different/ hypersensitive…could it be that I’m autistic? I love and am hyper alert to scent but at the sane time I get overstimulated. I have a very keen Seanad of small. And I like to be warm. How does one get diagnosed? Is it too late?
Hi Astrid — it’s never too late to know yourself better. 💜 having just a few of these experiences don’t necessarily mean you’re autistic, but if you do more research (resources below) and still feel it resonates it may be worth getting a referral to a Dr that specializes in adult autism diagnosis!
Oh my boldness...this is ME!! The more I'm on this platform, reading and learning from others, the more I'm convinced I'm AuADHD and not just ADHD. This is so helpful. Thank you x
Wow! I didn’t know you could have an Apple watch display the decibel level of places! Yet another pro to getting one lol. I was also diagnosed with Social Anxiety and my therapist dismissed me when I said I thought I might be autistic, even when the preliminary test she gave me said I likely was. Because I am also ADHD, so she dismissed my symptoms as ADHD combined with social anxiety. I was privileged enough to be able to find a new therapist and less than a year later pay out of pocket for my evaluation and subsequent diagnosis, when I was 32. But my sisters who are both more obviously autistic than me don’t have diagnoses yet because they can’t afford to pay out of pocket and their insurance doesn’t cover an evaluation for an adult. Our youngest brother was diagnosed in elementary school, which is likely the only reason we had any interest in learning about autism to begin with, otherwise we still might not know.
“No amount of anti anxiety meds can make their world quieter.” Lord. Isn’t that true. I started wearing noise canceling headphones in airports about 10 years ago and can 💯 relate to the calm. I found out I had ADHD at 53. I found out I was autistic last year at 55. Life changing!
Very relatable - I used to think my anxiety in shops, the bank, pharmacy etc was just my crippling social anxiety. Until I realised that my anxiety was actually being triggered by the fluorescent lighting. It’s staggering to think how many undiagnosed autistic people there must be out there.
"No amount of anti-anxiety medication can make their world quieter" - which is why I'm vehemently opposed to people just being given medication for anxiety (or anti-depressents) without going through more formal testing for autism & other conditions. It's not always "anxiety" or "depression", it could be something else.
Ah diagnosis. I finally self-diagnosed at 70 after recognizing myself in an article about parents who only realized they were autistic when their kids were diagnosed. Anything over 75 dB causes me physical pain in my ears. I love my noise-cancelling headphones.
My journey was similar - I recognized myself in video content by and about autistic women and then went down the rabbit hole of research from there. Thanks for sharing
Re the noise thing, even just *knowing* it’s a ‘thing’ makes it easier to cope with somehow. I was at a busy networking event earlier this week and couldn’t hear the person speaking to my group over the very noisy hubbub. So I nodded along and kept up with the general gist and didn’t stress about the fact that I couldn’t hear the detail.
YES. Also, I try to frame it in a way that I'm not the problem. "It is too loud in here to hear a conversation" instead of "I can't hear the conversation." Somehow the framing makes it feel like, the environment is the issue, not me. (Similar to "These clothes are not the right size for my body" vs "I am not the right size for my clothes.")
Ding ding ding! The environment isn’t right for us, rather than us not being right for the environment.
Women are definitely underrepresented compared to men but I as a male had the same experience and found neurodivergence literature well after the age of 45.
To even say my whole life changed would be a massive underestimation of the value that knowledge has afforded me.
Turns out, I’m not just a freak that continuously gets overwhelmed and loses it!
This was my experience, too. Once I had the understanding, it was so clear to me that it wasn’t anxiety (and yet my (then) psychiatrist kept going on about it; frustrating!). The distinction is so important!
It's great when we finally get that clarity, even if it does take way too long and often come in spite of, not as a result of, our medical system.
My psychiatrist for years didn’t believe me once I knew for sure… but you have worked and are normal! (Then why am I even here and constantly suicidal and overwhelmed. He was convinced I simply had anxiety!)
Ignorance knows NO BOUNDS! This was the psychiatrist to the mental health system!
I'm sorry you weren't heard for so long, Joe. It's heartbreaking. But glad you seem to be more sure now!
Thank you, yes the knowledge was the bridge that led to self acceptance of my limitations. And that’s totally fine I’m not like everyone else. But when you think you are same as everyone then clearly you are broken in some way, which of course is not true!
I recently just took myself off (with dr support) my anxiety meds. I started when my son was 2 (now 11). I started thinking over the years of getting him dx and seeing myself in him, my daughter getting a semi-adhd dx (don't get me started) that hey, my "anxiety" happens whether or not I am medicated and revolves around sensory overwhelm. When my son was 2 I couldn't very well leave him alone to go have some quiet. Now that he is older it's ok for me to find a quiet spot to re-center. It was a long detox but in the end I feel no different un medicated then I did while medicated. So I feel that kind of answers my question anxiety vs autism. Sorry for the book but I so resonate with this
Anxiety and accompanying depression are natural responses to internal and external overwhelm.
Nature gave we neurodivergents an experiential hair trigger.
Oh my god, the decibel monitoring via Apple Watch is *so* smart! Thanks for sharing. I'll definitely be using that idea in the future.
It’s been such a help for me! It’s like outsourcing the interoception that I lack, helping me to monitor my own sensory overload.
Hi Melanie! I copied this by hand into my commonplace book. This blew my mind. I have always had to experience the world with my earphones in. I stopped doing so when my elders would comment about how it made me antisocial or seem rude. I was also told that I may just “get anxious in crowded places”. I’d experience meltdowns or shutdowns when I got home. I thought I wasn’t doing enough to take care of myself but I didn’t know what else to do.
I recently started using loops (noise-reducing earplugs) at work. It does help a little but honestly nothing works as well as noise-cancelling earphones for me. Being held and surrounded by music feels so good for me.
Thank you for sharing your experience. I’d like to try measuring the volume of my environment when I feel comfortable and when I start to feel uncomfortable. I don’t have an Apple Watch so maybe there’s an app or a small device. I never would have thought to do that!
I’ve had three different counselor/therapists tell me they think I’m autistic or possibly audhd. I have no insurance, and they couldn’t officially diagnose me because they aren’t trained in it. The nearest specialist is well over 2 hours away. I don’t tell people I have it but at this point I’m treating myself like I do. It’s a slow process.
It's such a long journey to self-discovery, but your self-idenrtification is welcome here!
I'm sorry you don't have more resources close by, but I wanted to suggest checking out LBee Health as they do virtual assessments for under $500. It's not nothing, but cheaper than a lot of other options out there.
https://www.lbeehealth.com/low-cost-adult-autism-assessment?
I’ll have to look into that! Ty
My first inkling that something was odd about my sensory threshold was the overwhelming urge to run out of flourescently lit supermarkets, about 30 years ago. It all makes so much more sense when you understand your condition and its limitations. Then the next stage is to ask confidently for accommodations.
Hi Melanie
I can relate. I am 50 and extremely noise sensitive. I wear earphones to block out noise all the time, I can’t be in crowded noisy spaces too long….it makes me tired and I feel ill. I’ve always felt I’m different/ hypersensitive…could it be that I’m autistic? I love and am hyper alert to scent but at the sane time I get overstimulated. I have a very keen Seanad of small. And I like to be warm. How does one get diagnosed? Is it too late?
Hi Astrid — it’s never too late to know yourself better. 💜 having just a few of these experiences don’t necessarily mean you’re autistic, but if you do more research (resources below) and still feel it resonates it may be worth getting a referral to a Dr that specializes in adult autism diagnosis!
https://melaniedeziel.substack.com/p/resources-so-you-think-you-might
Oh my boldness...this is ME!! The more I'm on this platform, reading and learning from others, the more I'm convinced I'm AuADHD and not just ADHD. This is so helpful. Thank you x
Wow! I didn’t know you could have an Apple watch display the decibel level of places! Yet another pro to getting one lol. I was also diagnosed with Social Anxiety and my therapist dismissed me when I said I thought I might be autistic, even when the preliminary test she gave me said I likely was. Because I am also ADHD, so she dismissed my symptoms as ADHD combined with social anxiety. I was privileged enough to be able to find a new therapist and less than a year later pay out of pocket for my evaluation and subsequent diagnosis, when I was 32. But my sisters who are both more obviously autistic than me don’t have diagnoses yet because they can’t afford to pay out of pocket and their insurance doesn’t cover an evaluation for an adult. Our youngest brother was diagnosed in elementary school, which is likely the only reason we had any interest in learning about autism to begin with, otherwise we still might not know.
“No amount of anti anxiety meds can make their world quieter.” Lord. Isn’t that true. I started wearing noise canceling headphones in airports about 10 years ago and can 💯 relate to the calm. I found out I had ADHD at 53. I found out I was autistic last year at 55. Life changing!