#spd discussion

[stimtoybox]

Stimming, Access and Consent

This is something I’ve mentioned a lot at various times, but it’s popped up this week through conversations with my doctor, researching migraine triggers, yesterday’s post on the Version 2 Fidget Cube knock-off and this post on clashing access needs in which @stimful-gifts mentioned this blog.

Since I’ve been wanting to write a proper post on this for a very long time now, I’m taking this as a sign from the universe to let the inbox wait a while longer.

My thesis is this: stim toys change our immediate environment. To direct our movement, provide distraction or enable focus, they offer up something we can touch, feel, smell, move, taste, chew, manipulate, watch or hear, often in varying combinations. Some toys only impact our immediate environment; some toys impact a much larger space, including the space occupied by other people.

Stim toys wouldn’t work if they didn’t change our environment in some way.

Abled, neurotypical culture works on the idea that certain types of environmental change are acceptable, based on ableist assumptions of what humans can tolerate. Playing pop music, for example, is generally assumed acceptable in supermarkets and shopping centres. Perfume is also considered acceptable when one is out in public.

We have this idea that if something fits that unquestioned category of acceptable environmental change, we don’t need to ask permission to make that change in a shared space. The problem comes when people have needs that don’t match that category of “acceptable” - both the environmental access needs of ND and disabled people but also the needs of people who just don’t want to hear pop music while buying a loaf of bread. Even for able-bodied NTs, this system of assumption over seeking consent is unfair and needs to be dismantled.

It is natural to not question the changes stim toys make on the environment around us. Even we, folks who most often have significant environmental access needs (including the need to stim), are quick to disregard needs we don’t have if it falls into that intuitive, unquestioned, ableist category of “acceptable environmental change”. We’re trained from birth to evaluate everything this way, so of course we don’t think about it.

I’m autistic with the SPD fun package deal. This week my doctor gave me the additional word “migraine” in an effort to explain why I react so badly to so many things: chemicals, petrol, perfume, varnishes, movement, flickering, bright lights, loud noises, sharp noises, the glow of the computer screen. I get headaches, dizziness, vertigo, partial seizures. Your hands tapping on your phone screen will distress me. Your perfume and flashing lights will put me to bed. Your clicking will make me scream and snap. Clicking toys, noisy toys, rattling toys, toys with flashing lights, LED spinners, toys scented with artificial fragrance/perfume, toys with chemical odours, toys that have a lot of flickering movements - these will make me distressed, uncomfortable, ill or unable to stand. If these things happen in a space where I am already compromised (on a train where I’m dealing with motion sickness, or in a noisy/crowded space) it’s even more disabling.

There are a great many stim toys and bodily stims that will make me unable to be a comfortable participant in any given shared environment. (There’s even more objects that aren’t stim toys or bodily stims that do the same, although I’d argue that many of these are pretty stimmy, just more culturally acceptable. Perfume, for example.) There are a great many of my own stim toys and bodily stims that will make someone else an uncomfortable participant in any given shared environment.

As stimmers, we need to be aware of the changes our toys make to any given space and have active communication with other folks in that space. We need to seek their permission to change it. There is a very big difference between a person not wanting to go outside with someone using a chewable because they’re chewing (ableism) and a person who can’t bear the slurping sounds made by the chewer (conflicting access needs), and we need to be conscious of that difference and be willing to discuss alternatives.

(Sometimes there are no alternatives. Sometimes the only option is for the people impacted to be in two or more different spaces. That’s frustrating and unfair, but it’s also the reality of disability and conflicting access needs.)

If your toy changes the environment, you should get the consent of all the other people who occupy that environment before using that toy in a shared space. (Remember that your own private space is great for all these toys, and you have every right to use them when there is nobody else impacted by them.) We must start a culture of being aware of the changes our toys make and having discussions about using them. We need to empower ourselves with a broad stim kit so that we have options if one toy bothers someone in a space we’re sharing.

I actively encourage everyone to have as many different sorts of toys as is possible (aside from it being good practice for physical injury concerns) and even different variations of the same types of toy, as that increases the likelihood of finding something people around you can tolerate and decreases your frustration at having to take up a toy that doesn’t fill your needs of that moment. A chewable that makes fewer or quieter slurping sounds, for example, to swap for the one that bothers someone else, even if it isn’t your favourite chew pendant.

Safety and access requirements we need to consider in our toys include:

Is it made from something that might provoke an allergic response, like rubber or latex?

Does it contain a fragrance? Is that fragrance artificial (perfume) or natural (essential oils)? Does it have a chemical odour or contain chemicals that can be inhaled or smelt? Does it have a flavour that causes a scent?

Does it make a noise? Is that noise quiet or loud? Is it constant, like white noise, or periodic? Does it change in volume or intensity? Is it sharp and abrupt, like a click? Does it rattle?

Does it have any movement? Is that movement flashing, flickering or quick? Can that movement be distracting? Does the toy make you move? Are your movements repetitive or subtle, flickering or flashing, slow or quick?

Does it light up? Does the light flash or change in intensity? Does it change colour? Does it change gradually or abruptly?

Does it have a texture to which someone else might be exposed?

If the answer to any of those things is yes, we need to make sure that the people around us consent to that change in the environment they’re sharing with us.

For me, toys with flashing and LED lights (fidget spinners), artificial fragrances (anything not essential oils) and loud, sharp clicks are especially unsafe. Others will find latex to be dangerous. There’ll be other things I’ve left off the above list through my own lack of experience!

I’m not saying we can’t or shouldn’t use those toys. I’m just saying that if there’s any chance they’ll impact others in a shared space, we should ask. Ask your teacher or boss if anyone has any allergies, if it isn’t safe to ask your peers. Ask the people sitting next to you if they mind the click of your Tangle. It doesn’t matter if these people are ND/disabled or NT/able-bodied. We’re acknowledging that our toys can and do change the space in which they’re used and finding out if that change is going to be a concern for anyone.

(And if we can’t ask for consent, which is true of many very public places, we seek out the most low-impact toys we have in our kits: quiet, no scent, low movement, no lights or flashing, no rubber or latex. Toys like LED-light spinners are dangerous and shouldn’t be used in a public space, ever, unless everyone in that space has consented to it - and consented freely without pressure.)

By actively asking people ourselves, by not making people wait to request that we stop an annoying or difficult-to-experience stim, we’re building a culture where we’re all able to discuss more freely one’s sensory needs, where asking someone else will result in less frustration and aggression. By actively building a varied stim kit, we’re making it so a stimmer doesn’t feel they have to stop stimming - just change to a different toy, as it is incredibly important that we have the right to stim! By having conversations and giving ourselves choices, we’re creating a world where seeking consent for creating any kind of environmental change becomes a norm, and that can only help and empower ND and disabled people, regardless of whether we stim.

I need a world where people think to ask me before jingling pocket coins, stop playing with LED spinners in public or spraying perfume in a space I occupy. The road to building that, I think, starts by our showing people that the right thing to do is seek consent for those changes. It starts by my treating others how I wish to be treated. It starts by doing away with the idea that we can ever assume something won’t bother someone else and start instead assuming that something might.

TL;DR: many stim toys introduce change into the environment that impacts the people around us. As people who have sensory difficulties ourselves, and need that understanding from others, we need to be mindful of how others experience our stimming. We need to start a practice of seeking their consent to that change in spaces we’re sharing with others, regardless of whether they are ND/disabled or NT/able-bodied.

- Mod K.A.

[stimtoybox]

Question

I don’t know If you’ll answer, but do you or anyone else know the best noise cancelling headphones or ear defenders for like a concert; and ones that aren’t incredibly high priced. Also any ideas of things to do to keep from having a panic attack and/or sensory overload?

Can I please ask everyone to not submit (as opposed to asking) questions when I have the askbox closed? (In other words, please don’t use the fact that I have submissions open as a way to circumnavigate the closed askbox.) It’s not fair on everyone who is patiently waiting for the askbox to open, and it’s also not fair on those who have been waiting a long time for me to heal so I can answer those waiting asks. When I do close the askbox, it’s because I’m in a situation where I need to limit the questions coming in to tackle those that are waiting, and folks who submit questions instead make this difficult.

Thank you very much, everyone, for your understanding on this point.

Headphones and Ear Defenders:

On the first point, I’ll ask for folks to reblog or reply on this post if they have any suggestions. You might also like to check out our category tag on headphones and ear defenders for various posts and discussions on the topic. I still don’t have a set of either that I would personally recommend for you, so I think that might be your best resource.

Panic Attack / Sensory Overload:

This is a difficult question to answer generally. I’m acutely aware, myself, of how general answers seldom suit my specific needs as a walking tangle of diagnostic labels, and I rather doubt that there’s an answer I can give that will work for your situation better than truths you already know. Additionally, the situation, circumstance and location often massively impacts what tools you have and how you can or should employ them.

So I’m actually going to ask you questions, because you already have coping strategies. You just might not fully realise them, or you might think that a coping strategy results in a more drastic easing of your experience when in fact it often just allows you to survive it. Sometimes it’s only skin-of-your-teeth survival. Sometimes it’s just the difference of being able to walk away from the situation and melting down instead of melting down then and there. I know we want tools that help drastically minimise or even erase the misery of panic or overload, but the honest appraisal is that these things don’t stop or erase panic or overload. They just help. I am saner and happier accepting that, as much as I’d sell my soul to not experience either.

I also absolutely and unequivocally advocate for avoiding things that overload, if possible. Avoiding overload is much simpler than dealing with overload once it’s triggered, and if it’s something that can be avoided, that’s one fewer concern!

1. What triggers your sensory overload and/or panic? Be general at first. List anything that comes to mind. Then try to break it down and find any smaller elements. Sit at the end of the day for a minute or two and think about how you felt at various times and what you think might have caused it. Keep on doing this. Even when you think you know, check in afterwards! Over time, you’ll be building up a list, and that list gives you information. It is much harder to decide how to handle a trigger, especially ahead of time, if you don’t know what your triggers are, so I don’t recommend skipping this point.

(Some panic triggers just can’t and shouldn’t be avoided, in which case finding ways to experience it more easily is better, but some might be.)

2. Which of those triggers can you reasonably avoid? If you can avoid this thing and it causes no harm to you or the people around you, do it.

3. Which of these triggers can you minimize or lessen? It might be that some of these things can be lessened, too. Can you ask (or have someone else ask) your neighbour to turn down their music? Can you ask your housemate to spray their perfume outside? Can you cut the tags out of your clothes? Can you go to the shops at a time when there’s less people shopping?

4. What does your overload feel like? Recognising what we feel, physically and emotionally, is difficult for many ND folks, especially we autistics. But if you can, over time, put together a list of experiences and sensations, especially with regards to early warning signs, you’ll have more warning about when an overload is coming, what it feels like when it does and what you might do about it. For example, knowing overload is coming and stepping away from the situation while you can still communicate to others that it’s happening, for example, is important if you lose all communication ability.

5. What does overload or panic take from you? What abilities do you lose? Wrist a list of these, too, as this will impact how you handle the situation. If you cannot read a list of response ideas on your phone when overloaded, for example, then having a list of approaches won’t be helpful to you. If you can’t communicate at all, having someone ask you unrelated questions as a distraction technique won’t work.

6. What worsens your overload? List these things, especially items that don’t quite trigger it but don’t make it easier to experience. You don’t want these things to happen when the world is already too much for you, and this means you can more knowingly avoid these things if possible. For example, someone touching me doesn’t trigger my sensory overload, but being touched will ratchet up said overload when I am overloaded, so touching belongs on my list.

7. What sensations can you tolerate ordinarily but not when you’re overloaded or panicked? Can you replace it with something always tolerable? I’ll give an example: if you can tolerate the touch of your quilt when not-overwhelmed but can’t bear it when overwhelmed, get rid of it and replace it with something you can always tolerate. Make your room, your bag, your clothing, your things, your personal spaces, as tolerable/pleasing for you as possible, no matter your state. This gives you somewhere safe and comfortable to be; this makes it easier to recover from overload. You don’t want to be out shopping and have to deal with screaming children plus the devil tags on your clothing. This is just an act of self-care, the act of making your environment, as much as you can modify it, suitable for you all the time.

8. What positive sensations make you feel connected to your body? It doesn’t have to make you feel amazing. List anything even a little positive. I’m talking about stimming as a coping mechanism - a means of delivering positive sensory input. It does help, in various ways, with overwhelm. List everything you can think of. Keep adding to it. Keep a feel-good list or journal! Do what society tells you not to do: touch clothing in a store, pick up objects on a shelf, listen to things, look at colours. Neurotypical adults are taught to shut off so much positive sensory input along with the negative, but since we can’t do that and have to live in the world they made for us, we need to embrace our feeling-things-too-much powers by finding positive sensations.

(Stimming categories include smell, weight/pressure, touch/texture, taste, movement/manipulation, sound and colour/visual movement. Most of us will have a category to which we react more strongly over others, and most of us will have a category to which we respond little, not at all or negatively. There are toys on this blog corresponding to all these categories, toys all of us here use when panicked and overloaded. There’s also a wide variety of blogs and games, especially for visual stimming, so this category is easily accessed via phone. If you don’t have a stim toy kit already, check out this post on stim toy categories.)

9. Are there any similarities between your listed positive sensations? Have you listed a lot of things that suggest touch-seeking behaviour, for example, or have you listed a lot of movement-intensive toys, or experiences relating to sound? Is your list pushing you towards one of the above stim toy categories? This is important for building your kit or choosing which of your toys or stimmy items to keep in your bag or on your person, as you want the most effective toys/items within easy reach.

(I will say that not all toys are suitable for public use, so that’s something to keep in mind, too. If you like a lot of visual stimulation, for example, I’d ask you to consider not using toys with flashing lights as your public go-to calming stim, as flashing lights can trigger seizure and sensory overwhelm in others. Since most of us in panic or overload cannot ask if others are bothered by this, we need to choose a non-flashing toy.)

10. Which of these listed positive experience/stim categories can best relax you? This ties in to making sure as many of your things are still accessible to you when overloaded, as “positive” may still not mean “calming” in a high emotional state. (I love metal, for example, but when I am very wound up any kind of sound isn’t calming for me.) Experiment here, if needed. Try different things and categories from your list to find out what works best. The more you think about this, though, the more likely it is one of these things will pop into your mind when you need it.

11. What sensory or non-sensory experience distracts you? Is this something you can employ or have others employ when you’re panicked or overloaded? For example, whenever I went into shutdown, my psychologist would ask me a question about gender, activism or feminism, because she figured out that getting me into analytical mode got me out of shutdown much more quickly than standing back and waiting. Do you have that one song that always makes you happy? Do you have a topic or special interest? Do you need to get away from people altogether and hide in a quiet space? Do you want to try breathing exercises or meditation? Again, list!

12. How can you employ these experiences? You’ve got your lists and you have some ideas as to what might help you, so now you need to make it accessible. Put the calming music on your phone, tuck a Tangle in your pocket, cut off devil tags, keep a spinner in your bag. Is there a particular way you mean to use any items on your list? Make sure these things are planned out and as accessible as possible, as it’s no good having a list, thinking about a solution you wish to try and then not having it to hand when you’re out and sensory overload strikes.

13. Are there external supports you can put in place for when you’re panicked or overloaded? Do you have a friend or family member you can trust, someone to whom you can to indicate--in whichever form of communication is easiest, be it by sign or text message or AAC--as to when you’re struggling, knowing they can support you? Do you need them to remind you to step outside, slow your breathing or reach for a stim toy? Or can you set messages on your phone? Can you keep a list of steps to follow on your phone or in your pocket? Is there a way you can help yourself reach for one of those distractions or positive, calming sensory experiences?

I’ll be honest: this is a lot of work. You need to be an explorer, willing to try and experiment knowing you might only find little pieces of ease here and there. An awful lot of things others use and discuss may not work for you, which does put the onus of experimentation and discovery on your shoulders. That’s hard and scary and a lot unfair, but I don’t know any other way.

- Mod K.A.

[stimtoybox]

I don't know if this qualifies as stim toys but do you have any advice about ear defenders/noise cancelling headphones? Do noise cancelling headphones work like ear defenders when you aren't playing music?

Anon, I know absolutely nothing about this. It’s actually something I’d like to know more about myself, as I’m in need of getting a set now I know they exist.

So I would be grateful if our lovely mods and followers could comment, reblog or ask with information, for our fab anon and me.

Can anyone give us a good run down on how noise cancelling headphones work?

- Mod K.A.

ETA, because we have the best followers:

@calming-stims​ says,

I used to have a pair. Granted, they were kind of a cheap pair and this was about ten years ago, but the way mine worked, there was a little button on the side to turn on the “noise cancelling” part. It was like a low-key static in the back of the music you were playing that made it more difficult to hear your surroundings, without being intrusive. It definitely worked without playing music. I distinctly remember looking someone in the eyes when they were interrupting my study time and then making a show of turning on the noise cancellation so they could be quite certain that I was no longer listening.

I don’t know how all noise cancelling headphones work, though, and I’ve never owned ear defenders.

@bryalba says,

I have Snug headphones and like them. They are made for children but they fit my head (adult female). They come in different colors and don’t scream noise canceling headphones so I can wear them in public. They do hurt after wearing them for extended periods of time (I’m talking a few hours) and I can’t sleep with them comfortably. I used them on forth of July and they were amazing. 

Thank you so much, both of you!

[stimtoybox]

on the subject of noise cancelling headphones, do you know how someone with glasses could use something to block out noise ?? i can't wear any over the ear headphones because they press my glasses into my head and hurt, and i think i wouldn't like the feeling of earplugs in my ears 'sealing' them up

I don’t wear glasses, anon, but I absolutely feel you on the problem of earplugs. They either hurt or they don’t hurt but don’t block out enough sound for wearing them to be worthwhile (and still aren’t all that comfortable for me). There might be a good, super comfortable, non-sealing-feeling sort out there that actually work (and are sized to fit my ears) but I haven’t yet found them.

Do our fabulous followers and mods have any suggestions for how they cope?

(Thank you so very much to everyone, by the way, who has taken the time today, or will, to offer suggestions and advice!)

- Mod K.A.

[stimtoybox]

oh my god you get distressed by flickering movements out of the corner of your eye too?? i thought it was just me! this is such a relief, i always feel terrible whenever i get as upset as i do whenever someone's tapping out a tune on the steering wheel or something similar. it doesn't help whenever people notice i'm distressed and take personal offense to it, either, because i usually can't say i blame them. do you know what causes this or how to not react as extremely?

I absolutely do, anon, and I’m also glad to know it isn’t just me!

(Content advisory for my trying to explain what this feels like with metaphors of wires in my brain.)

Fingers tapping on the steering wheel, like you say, or someone typing on their phone (something everyone does on trains and buses). I had near on meltdowns in school because I couldn’t stand watching someone beside me writing in their notebook - the constant movements of their pen across the page is agonising. Sometimes the movement of my own hands triggers this, even! (Being a touch typist helps - I don’t need to look at the keyboard. I probably couldn’t use a computer at all if I had to watch my hands.) It all feels like someone’s put a wire through my brain or spikes behind my eyes: it doesn’t hurt, but it’s a sensory presence in my head, a kind of dragging and movement in my skull. Like someone’s poking at different things and dragging the wire from spot to spot. I struggle to articulate it in ways others can comprehend, because I think this is part of the general sensory world folks without SPD can just filter out.

(I really don’t have a good metaphor to describe, wholly, what it feels like to experience, just that it is incredibly distressing and trying to keep that feeling inside my skin and behind my face is another frustration on top.)

It makes being around people, sometimes, incredibly difficult as well. It impacts me so much it’s hard to ask politely for people to stop doing this - by that point I’m struggling to speak so that I’m either incredibly abrupt, repeating myself a million times or just flat out incoherent. Even when I can manage politeness, it’s not a thing most people understand: it doesn’t distress them and they can’t comprehend that it bothers me so badly, especially when it’s a feeling I lack the language (even right now) to explain in easily-comprehended ways.

I don’t know, for certain, what it is myself. I’m inclined to think SPD, as part of my Autism Package Deal, as I’ve had it all my life. As an adult (and on meds that lower the seizure threshold) this now sometimes results in partial seizures, a dizzying and rolling series of waves through my head. (I also have more extreme reactions to other sensory triggers now, too, which are probably a combination of autism/SPD, meds, my weight, a few environmental changes. Flashing lights have joined flickering in being incredibly awful to experience.) But, like you, I haven’t seen a lot of discussion about this fun little quirk!

Unfortunately, anon, I wish I knew how to better manage this. I turn my back a lot. (Oddly enough, even once I stop seeing the finger flickering, I still feel it behind my back for a long time afterwards. Still have that same sensation of wires in my brain. It takes a long time to relax afterwards.) I try and find distractions - a book or phone if you’re not prone to travel sickness or not in a classroom environment. Music, just to give you something pleasant to hear.

Stim toys, especially those of the sort that take a lot of concentration and have a lot of sensory components, since I’m trying to get my brain to focus on something else. If you’re comfortable with being visibly different/disabled, keep an eye mask in your bag, for when you can’t turn away enough to block it out. Moving, if I can, helps me a lot - especially if it’s full-body movement like pacing, somewhere to redirect the distress. If you can get out of the situation, do so - I don’t feel guilty anymore about changing seats or moving down to the other end of the train.

I do not find that the standard psychological practices of breathing/meditation/mindfulness help me with this at all, but others might have more success with this. For me, it’s distracting, leaving or moving, and unfortunately there’s many situations where these are only partial solutions, or none at all. Sometimes the best I can do is pull out a Tangle and try to focus as much as I can on that … and tell myself that I’ve survived this before, I’ll survive it again.

Do any of our followers have any experience with this?

Anon, you have all my commiserations. Flickering movements are a nightmare.

- Mod K.A.