Guilt, Shame and Stress around Sensory Issues

[Cutesie]

My sensory sensitivities flare up and simmer down depending on my moods. Some can disappear for months. I talk here specifically about the times when I'm relatively stable emotionally.

Here is an example: I don't like touching metal door handles. They make me feel yucky. I'll often wait for someone else to open the door, or I'll use something other than my hands to do it myself. What happens if I do touch it with my hands? On bad days, it can get rough, spiking my anxiety and worsening other sensory triggers. On good days, I may feel like avoiding it, but nothing really happens if I do it. The negative thoughts in those times is probably a warning from the bad moments.

There are two issues that I have:

1) I don't often know what the proper balance should be when dealing with these issues. Should I put covers on the doors in my house? Only the ones that are mostly used by me, or also where everyone else hangs out? (Any recommendations for specific covers would be helpful; perhaps I'll ask in a separate thread.)

What should I do out in the world? Do I carry a small towel and look weird every time? (I carry a couple of other items for dealing with sensory stuff, such as sunglasses.) Do I use my clothing to avoid touch, like I usually do? These aren't questions that anyone can answer; there will always be more. It's not simply about door knobs. I'm pointing out the struggle that I, and I'm sure many, deal with in not knowing how much to fight and when to be kind to oneself by giving in.

2) Thinking about and living with making these decisions leads to guilt, self-reproach and self-loathing. Some of the questions that I ask are: Why am I like this? Why can't I understand that life has difficulties? If I am feeling well and the sensitivities aren't really there, why do I still try avoiding?

All of this applies equally to the OCD-type symptoms that I have. For reference, I am diagnosed with neither ASD nor with OCD. As is often the case, much of what I'm thinking is stuck between the lines here.

 

[Jumpinbare]

You might try carrying a glove with you. After covid, many people want to avoid germs, so it wouldn't look too strange to put on a glove to open a door.
I have touch sensitivity also. My main one is having aversion to fabric on my skin, but that one I just have to tough it out since people wouldn't like me being naked in public. I also hate being touched, so handshakes and hugs are horrible. I have a t shirt that says "Please don't touch me. I'm autistic "

 

[Cutesie]

I also hate being touched, so handshakes and hugs are horrible. I have a t shirt that says "Please don't touch me. I'm autistic "

Your touch sensitivity must be real bad to have you do that. I don't know how "autistic" you look, so I don't know how big of a step it is for you to announce it like that. While I often yearn to tell the whole world all of my problems, I'm not at that point. You've clearly decided that wearing that badge is necessary.

This is precisely what I'm trying to get at. The word "masking" is still fairly knew to me, but I obviously know well what it is. How autistic should I be willing to be? I stopped trying to not flap my hands and wring my fingers in public, but unless in very great distress, I do try not to clap. I'll risk exposure by keeping a paci in my pocket (it gives me comfort by just being there), but not enough to take it out. I felt proud of myself for leaving a social scene last week, when the "win" is usually to tough it out and stay. It's a constant battle of trying to make choices and not knowing they are the right ones. .

 

[FayetheAspie]

I often use my shirt tail to open knobs around the house and a paper towel to open the restroom door knobs in public restrooms. For me it is more about bacteria though (especially bathroom type bacteria). There is a family member who does not like to wash their hands that is why I don't like handling the knobs at home. Sometimes I will use a dry paper towel to turn on light switches and such. My dad likes to mock me about things like this, but if he would wash his hands after certain things I would not feel the need to do this. I end up cleaning knobs alot too.

 

[Xinyta]

Thinking about and living with making these decisions leads to guilt, self-reproach and self-loathing. Some of the questions that I ask are: Why am I like this? Why can't I understand that life has difficulties? If I am feeling well and the sensitivities aren't really there, why do I still try avoiding?

I don't know how "autistic" you look

The word "masking" is still fairly knew to me, but I obviously know well what it is. How autistic should I be willing to be? I stopped trying to not flap my hands and wring my fingers in public, but unless in very great distress, I do try not to clap. I'll risk exposure by keeping a paci in my pocket (it gives me comfort by just being there), but not enough to take it out.

Let's address the biggest elephant in the room first.

The perception that Autism by default is inherently some fault in character, or in mental state, that must be corrected. This isn't the case. Your sensitivities and quarks are a aspect of your neurology. Not a illness.

I don't wish to be insincere sounding with this, but there is no physical 'look' for autism. It's not like Down Syndrome. The actions, cues, and speech, in some cases, we give off in our behavior, are what allow others to see our autism.

Everyone masks to differing degrees. Though NDs do so out of socail self-imposed obligation. However. Masking long term, is extremely unhealthy for your mental state overall. But to stop masking requires understanding and accepting your Autism. As trying to suppress Autism, is actively suppressing your true self.

You cannot fix or change Autism. Just make adjustments to help improve otherwise difficult situations due to being a ND in a NT world.

In anycase. I personally have issues with direct sunlight, extreme temperatures in either direction, and extremely humid days. I am not sure what else atm, beyond extended socail situations. Since I also am juggling this with psychosis and alexithyma. Making alot of things far more difficult.

 

[Cutesie]

The actions, cues, and speech, in some cases, we give off in our behavior, are what allow others to see our autism.

This is what I meant by the look. What I was saying is that some people are open to being seen as autistic, some of them because it's obvious anyway, others because they've so come to terms with it that they don't care that others know.

Right or wrong, because of the stigmas still attached to it, many of us don't need the first thing that someone sees about us to be a sign proclaiming, "I'm autistic".

 

[jsilver256]

Also, I'm pretty sure most NTs have no idea what being autistic looks like. If they saw someone in sweats, noise-blocking headphones, and sunglasses they'd probably think "weird" at most.

 

[Cutesie]

Your sensitivities and quarks are a aspect of your neurology. Not a illness.

It matters little to me if a sensory sensitivity is an illness or part of me. Either way, it can hurt me and I'd try "correcting" or minimizing it.

I'm at a community center listening to a lecture (a completely-voluntary one) and the light is bothering me. I know that it's not really that bright; most of the time I think it's too dark in that room. What are my options?

1) Sit there and take it. Be "normal" for the world but let myself go crazy inside.

2) a. Put my head down, or b. face the wall, or c. sit on the floor, or d. cover my eyes with my hand (doesn't work so well, because it wants to stim), e. or wear sunglasses, f. or stim like crazy. Any one of these can allow me to reduce the negative tension. Every one of them makes me look weird to some degree, and can be seen as disrespectful to the speaker. (Maybe not the sunglasses one.) I'll then apologize to the speaker, who says that he didn't even realize, or he starts feeling empathy for me that I wasn't seeking.

3) Leave the room - for a couple of minutes or for the entire lecture. I'll miss out on learning things and disrespect the speaker.

4) Learn - on my own or with help - how to sit still and not feel so bothered.

You see, I understand that there might not be a cure for it. There are ways of dealing with it, however.

By the way, can someone tell me which option - 1 or 4 - is more of a "masking" technique? As I stated earlier, the word is still new to me.

 

[Cutesie]

Also, I'm pretty sure most NTs have no idea what being autistic looks like. If they saw someone in sweats, noise-blocking headphones, and sunglasses they'd probably think "weird" at most.

When they see my brother and interact with him for one minute, they know. When they see some of the kids that my sisters work with, they don't need that minute.

 

[Rocco]

In this moment I say a blend of 1 and 4 only because I believe in challenging myself to some extent. Life is not easy, the real world certainly is not easy, and blending into groups or society is not easy.
I did not get my official diagnosis until my early 30s and had mostly already learned to deal with things the best I could, and accept that there are struggles in life.
Learning to respect your self and triggers helps a lot. Knowing your absolute limits is priceless! If you know how far you can push yourself you will know what you can take. While I embrace my autism as a part of me, I rarely surrender to the concept of being an Aspie, and rarely allow myself to give up on things that seem too hard. I do know my limits and boundaries and respect those limitations. I do not attend concerts, large or loud gatherings, and am cautious with extreme weather. I know these things can hurt me so I avoid them.
I also learned I was my own worst enemy at times when I was too far in my own head and excessively self conscious. Overthinking problems is bad for me so I just push forward and ignore the self depreciating thoughts and focus on something else like thinking of nice things or my special interests.

If I was in your shoes and the lights are too bright, I would wear sunglasses or bring them next time. I always have extra sunglasses though because bright light is awful.

It matters little to me if a sensory sensitivity is an illness or part of me. Either way, it can hurt me and I'd try "correcting" or minimizing it.

I'm at a community center listening to a lecture (a completely-voluntary one) and the light is bothering me. I know that it's not really that bright; most of the time I think it's too dark in that room. What are my options?

1) Sit there and take it. Be "normal" for the world but let myself go crazy inside.

2) a. Put my head down, or b. face the wall, or c. sit on the floor, or d. cover my eyes with my hand (doesn't work so well, because it wants to stim), e. or wear sunglasses, f. or stim like crazy. Any one of these can allow me to reduce the negative tension. Every one of them makes me look weird to some degree, and can be seen as disrespectful to the speaker. (Maybe not the sunglasses one.) I'll then apologize to the speaker, who says that he didn't even realize, or he starts feeling empathy for me that I wasn't seeking.

3) Leave the room - for a couple of minutes or for the entire lecture. I'll miss out on learning things and disrespect the speaker.

4) Learn - on my own or with help - how to sit still and not feel so bothered.

You see, I understand that there might not be a cure for it. There are ways of dealing with it, however.

By the way, can someone tell me which option - 1 or 4 - is more of a "masking" technique? As I stated earlier, the word is still new to me.

 

[Cutesie]

There are specific words that bother me. Some have a sound that I don't like, others are associated with something negative. Then there are those that have both issues. They're regular, practical words.

I just won't use the dual-problematic ones - not in speech nor in writing. Hearing or seeing them is disturbing but manageable, but I won't use them myself. There's a stubbornness about it - like I'm drawing a line and not agreeing to mask in this case. Even if it means stumbling for a substitute and not being understood, even though it causes me to hate myself, I'll rarely give in.