Unmasking…

Posted on by Astrid

Hi everyone. I’ve been struggling intensely for a while now. The aggressive meltdown that caused me to land with my head on the floor (as I mentioned in the comments on that post, I wasn’t actually thrown) was only the proverbial straw that broke the camel’s back. I’ve been having chronic headaches and nausea that the doctor says aren’t due to the fall. Last Wednesday, I had a fever just when the doctor took my temp, so she concluded I must have the flu or something. I doubt it, as I didn’t have a fever any other time my temp was taken and I’m not having any other flu symptoms. I’m more sensitive to stimuli, mostly sounds and scents, than I used to be. Unfortunately, my ability to argue hasn’t gone, so the staff believe I’m “oppressing” them when I refuse them access to my room when wearing strong perfumes. This morning, my support coordinator told me to stop pacing my room, saying it’s compulsive and that compulsive behavior only worsens over time. She may be right about that, but it’s not like I’m doing anyone any harm by pacing and it’s not like the staff deal with the reason for my being more compulsive. I’m pretty sure I’m in significant burnout and the obvious solution to my staff seems to be to repress my behaviors that indicate I’m in distress.

I’m trying to read up and listen to podcasts on autistic self-discovery and unmasking. Not that I have the attention span to read for longer than about fifteen minutes at a time. Or that I think any of the recommendations I find, are useful to me, simply because I have an institution and rather behaviorist staff to deal with. I’m also unsure where to draw the line between valid unmasking and infringing upon other people’s rights. For example, apparently I’m not allowed to ask staff to wear less perfume because that’s “oppressive” and I don’t know where it’ll end when I keep “choosing” to be by myself rather than accepting staff who are essentially presenting in a willfully overloading manner.

25 thoughts on “Unmasking…”

  1. Is it wrong to ask someone to wear less perfume? My ex doesn’t wear his cologne to my house when picking up or dropping off the kids, because it makes me nauseous. I thought that was asking for some decency. Perhaps I’m wrong. I hope you’re able to figure this out ❤

    Liked by 2 people

    Reply

  2. I find it highly disturbing that you’re not allowed to pace your room. It doesn’t matter if it’s a compulsive behavior it is a non-hurtful and maybe even helpful behavior depending. Furthermore I have asthma and anybody with a strong perfume is not allowed in my room either. You don’t have to have a reason for not wanting someone in your room. That is your room. It is your body to move with how you want so long as you’re not hurting someone else. The staff needs to learn that you have autonomy and that you have a right to privacy so long as you’re not hurting yourself or anyone else. Putting your foot down is the only way to do this. I am greatly disturbed by the fact that they will not let you pace your room and that they demand access to your room, even though you gave them a very reasonable explanation for why you don’t want them in your room. If someone tried to come into my room wearing strong perfumes, I would absolutely have a fit. Not because it’s my room, but because that’s my boundary and you’re crossing, it is completely dismissing me and disregarding my comfort. In the room that’s supposed to be my most comfortable space. I would not take this line down. I know you know how to advocate for yourself and I suggest you do so especially about the strong perfumes, but also the right to pace. I find it very, very disturbing this is unacceptable

    Liked by 1 person

    Reply

    1. Thank you so very much for your supportive comment. Re the strong perfume, the staff eventually did leave my room. She probably didn’t realize that, when I ask someone to leave my room, it does not mean the very opposite because I “need closeness”. That’s what my signaling plan says (though it also says to send someone else for a brief moment if I point out I don’t feel safe with someone) so I can’t always blame the staff. They’re taking my plan too literally.

      Re the pacing, I do realize I have a ton of compulsive behaviors. Some are more helpful or less distressing than others and pacing is one of the more helpful ones. I do realize that in my case my behaviors are not usually regulatory, but that doesn’t mean repressing them will help. I honestly need far more help preventing the need for compulsive behaviors, but the staff aren’t able or willing to do that.

      Like

      Reply

  3. I’m so sorry. It sounds like things aren’t going great. Is there some way to signal that the smells are too strong for you, like by coughing or gagging or something? People who wear strong perfumes always seem to be oblivious that their smells are overpowering.

    Liked by 1 person

    Reply

    1. Well I tried but my staff don’t recognize signs that I’m getting overloaded like these. They also seem to confuse sensory overload with racing thoughts, since at least once recently when I pointed out that I was sensorially overloaded, a staff asked me what was on my mind.

      Like

      Reply

  4. I was worried about you because you were gone so long! Glad to see you back. I don’t understand why the staff is so lacking in empathy. They shouldn’t even be wearing perfume or other strong scents to work. You may not be the only one who is bothered.

    Liked by 1 person

    Reply

    1. Good point. My comment was indeed rather blunt, so I can see why they objected to my choice of words and especially my tone of voice. Unfortunately, one of the first skills that goes out the window when I’m overloaded/sick/whatever is my ability to be nice.

      Liked by 1 person

      Reply

      1. I have that problem, too. No matter how passive I am under normal circumstances, certain circumstances will trigger my swearing like a trooper. I sust see it as reverting to my animal roots. I suspect there are triggers for all of us.

        Like

        Reply

  6. Wow. It should be normal for caregivers to limit any scented products as many people have issues with them. I sometimes will get a migraine from being around perfume. As far as the pacing, if it’s doing no harm, they should leave you to it.

    Not sure if I mentioned that my ex is institutionalized for mental illnesses. He paces daily, and they don’t bother him about it. Sometimes he forgets (perhaps deliberately, we don’t know) which room is his, and they gently guide him back. You would think that’s pretty standard?

    Liked by 1 person

    Reply

    1. Thank you for sharing your perspective. Honestly I can see why the staff felt the need to comment on my pacing, because indeed it’s a sign of distress and it’s even worse when staff ignore me when I’m in distress. However, like I said, stopping distress-induced behaviors won’t make the distress go away.

      Like

      Reply

    1. Thanks. I hope so too. One of the major problems seems to be staff haven’t been noticing all the microstressors I experience each day and have been experiencing for years, so now that I’m having daily meltdowns, including like I said sometimes aggressive ones, they see it as a sudden change.

      Liked by 1 person

      Reply

  9. Astrid:

    Which unmasking podcasts are you listening to?

    What about the ones about autistic discovery?

    [sometimes we discover ourselves; sometimes we discover others – especially in podcasting mode – and sometimes/differently when we read].

    Fifteen minutes of this material [whether at a time or in microdoses] is intense!

    [it just so happens that I have Unmasking for Life on the iPad as an audiobook – or Devon Price’s earlier Unmasking book – which I downloaded some three years ago].

    [But then my own taste in audiobooks is probably somewhere closer to Spare by one Harry Wales/Sussex].

    Lead with the need – not the deed – and certainly not the breed!

    [that is something behaviourist staff can be trained to understand – especially if they had animals as their background and continuing education].

    Rights – the things we have and we use whether they’re infringed on or not.

    Even more important to defend when and where they could be infringed on.

    And wearing LESS perfume is not wearing NO perfume at all.

    [Are there no chemically sensitive people in your purview?]

    Liked by 1 person

    Reply

    1. Thanks for your interesting comment. Re the perfume, I guess there indeed aren’t any chemically sensitive residents here, at least not people whose sensitivity has been diagnosed. Then again, that could as much be a factor of nonexistence as it could be a factor of (willful) ignorance. After all, one of my fellow residents has likely been in pain for years due to a by now terminal illness and the staff are still at least part of the time treating himm like he’s exhibiting misbehavior. I can’t blame the individual staff per se, as most have very little education themselves and are chronically overworked. I do blame the system though.

      Re the podcasts/books, I can’t remember the podcasts off the top of my head but the book I’m currently reading is The Autistic’s Guide to Self-Discovery.

      Like

      Reply

Leave a comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.