“What does it feel like to have sensory issues? What makes them better or worse?”
This is the second installment of a series of posts I’m doing because my answer to that question is not short and simple. And, as I opened the first blog post with, this series is not about autism and sensory issues in general. This post and series are about me explaining what I go through. There will be many similarities and many differences between what I experience and what others experience.
Part One is largely about my experience of the auditory world.
Part Two (this post you are reading now) is about the things that make my life easier or more difficult.
I’d like to lead with something that I’ve been thinking about in general recently. One thing that makes my auditory disability (and every other aspect of my disabilities) more difficult is when presumably well-meaning people say dismissive things about my challenges.
For example, a conversation with someone kind who cares about me might go like this:
Friend: “Oh, you should check out this thing that is on a street. It’s on a street that’s behind another street and over by where there used to be a street.” (This is a rough approximation for how spoken directions translate inside my brain.)
Me: “It’s okay. I can write down the address and enter it into my GPS. I can’t follow spoken directions.”
“But it’s really easy to find, it’s just . . . ”
“I have topographical agnosia. My GPS is an accommodation for my disability.”
“You shouldn’t call yourself disabled.”
It’s a hard conversation and gets harder as it goes along. And it’s an example of something that makes my auditory processing more difficult to cope with: When someone tells me I just need to concentrate or focus more or even just refuse to be disabled and stop it by force of will (this tends to take the form of, “well, when I feel that way, I just refuse to let it get me down,” or its first cousin, “I could give in to it, but I don’t have a choice. I have to hold things together” (both of these phrases, if you hadn’t noticed already, carry the implication that the disabled person who is limited in their choice of actions by some particular challenge is really just exhibiting the disability colloquially known as “a bad attitude.”)) I feel like my dismissed disability is not being taken seriously, as a real thing that I live with and sometimes work with and sometimes work around and sometimes totally despair about and sometimes see the coolest thing ever about.
There’s something else really important for the kind-hearted nay-sayers to keep in mind. They think they are being kind when they dismiss our challenges but often their dismissal puts us in a situation where, in order to advocate for the accommodations we need, we are forced to “defend our impairment”, often to someone we care about very much. It is never an act of kindness to dismiss someone’s disability because you are pushing them into a corner where often the only safe course of action is either to ignore the truncating of one’s reality or push back and in the process re-open psychic wounds, leaving the disabled person feeling drained or depressed.
So the number one piece of advice I have for someone who might be interested in not making my life more difficult than it already is: don’t try to dismiss my challenges. You’re not doing a kindness when you try to pretend there isn’t actually an elephant in the room. I am disabled and that’s just a part of who I am. And it’s like a friend said to me today, “it’s not you that’s messed up. There are things in the world that hurt you. It’s not something wrong with you. It’s a problem with the world.” That is a response that helped pull me out of a nosedive.
Feeling understood and accepted is so important. Having a sensory processing disability can be isolating. Being so noticeably different from others comes with social dynamics. For example, I’ve noticed sometimes when I put my hands over my ears, others behaving as if they are interpreting my action as a rudeness. This is especially clear to me when the painful thing I am guarding against is a Salvation Army bell ringer (I suspect my hands-over-ears is interpreted as some kind of political or economic commentary? It’s not. It’s just that those bells hurt me) or a high-pitched shriek of a child. I do not hate children. I love children! But when I crumple in pain from a high-pitched wail, I’m viewed as a child-hater, a selfish person who not only lacks empathy but has no maternal instinct.
Life is easier when I feel surrounded by people who understand that my pain is not a comment. Yes, behavior is communication, but all I am communicating with this behavior is that I am in pain. There is no room in my head for any other thought. Any attempt to engage me in communication during the pain is more likely to get someone snapped at than anything. Life is easier when I’m not told to just put up with it or urged to deal with it while told I will get used to it with time. When a sudden sound makes me jump in pain, I feel guilty if my jumping upsets someone else and it is reassuring when someone acknowledges that I can’t help reacting to sudden pain.
Understanding and acceptance. Everything else in my life is easier when I have understanding and acceptance. The stress of feeling bad about how people around me are reacting to my disability causes my auditory processing difficulties to increase. The more I feel safe — not just physically, but emotionally as well — with the people around me, the easier it is for me to navigate the world of sounds and voices.
Some of the other things that make my auditory processing issues more prominent and harder to cope with might be obvious: being especially tired, in pain from other sources, depressed, ill. or otherwise under the weather makes my auditory processing so much more difficult. There have been points in my life when I was under so much stress that spoken language — even with only one person speaking, in a space that is not loud or echoing — became completely incomprehensible. When my ex-husband was injured at work my boss came to me and told me that my husband was in the hospital. After I heard that, my ability to process sound into language and meaning completely dropped out. My boss continued to try to talk to me, but all I could say was, “what?” and even that from inside a bit of a daze.
So what makes auditory processing easier for me?
It helps when people let me have an unobstructed view of their mouth while they are speaking to me. People with facial hair need to be patient with me because they will be harder for me to hear. I intentionally didn’t phrase that in terms of lip reading, because my experience of lip reading doesn’t feel to me like I am reading lips. It feels like I am hearing. I regularly forget that I read lips. When I was passing through Aurora, Nebraska this summer, I asked a question of a worker at the deli counter in a grocery store. He began answering and I was following along well. Then he ducked behind the counter to pick something up, continuing to speak at the same volume as before.
When he bent down and I couldn’t see his mouth anymore, all his words immediately shifted from being clear and lucid to being a complete jumble of nonsense. When he stood up again and I could see his lips, the jumble resolved back into clear words: “– so you should check back on Thursday to see if we have some.” It was a shock to see just how much I rely on lip reading. Since I perceive lip reading as if it were actually hearing, I forget how much I lean on it for comprehension.
Don’t fire off a string of questions at me. It takes a lot of processing power for me, because my brain is trying to answer the first question and hear the second question at the same time. Then it’s trying to answer the second question while hearing the third question while not forgetting what the first question was. I don’t know what it sounds like to you when someone asks several questions all at once, but it’s overwhelming to me. Depending on the questions, It can leave me feeling anything from restless to antsy to anxious to have a string of questions asked all at once. It adds static to my auditory channel. Of course I will forgive you when you forget and fire some questions off, because it takes a while to re-learn ways of communicating, but don’t be surprised (and please don’t feel judged by me!) when you see a wave of anxiety come over me at the bit of overwhelm.
If you want to show me a TV show or movie, don’t grumble if I ask for the closed captions to be turned on. It helps me to enjoy the experience and come away entertained instead of exhausted from straining to get meaning from the dialogue. Some shows can’t be turned extra loud because the mix between voices and music means that turning it up loud enough for me to clearly hear the voices makes the music painfully loud and unbearable. The next time you’re tempted to say that closed captions ruin a show, remember that some people really need those captions and you are risking making them feel bad about asking for captions or afraid to ask for them in the future.
If you are teaching a class, the minimum you can do to help all your students (not just those of us with auditory processing disabilities) is to provide a written outline of your lecture topics. An accommodation I wish I had sought in college would be to be allowed to record lectures and have them transcribed by an assistant. Some professors were easier to understand than others, but it would have been nice to have that accommodation held “in reserve” for those professors I just couldn’t follow. I often ended up skipping lots of lectures because if I couldn’t understand the lecture, I was wasting my time being there. I’d focus on the textbook and sometimes only show up for exams or to hand in papers.
Another accommodation I find helpful from those very close to me is to ask me to repeat back what they told me when saying something really important. I can’t always know when I miss something important …. because if I missed it, I missed it. If someone is giving me information that I can tell is important, I will repeat it back on my own. Because words so often get garbled for me and because of the extreme difference in outcomes one can attain when including or omitting small words like “not” and “won’t” it’s crucial that I be prompted to repeat back important information.
I noticed that some commenters expressed similar experiences to those I wrote about last week. I’d be especially interested to hear comments throughout this series and not just from people who resonate with what I’ve written. I invite others to write about their sensory experiences, much as I am writing about mine in this series. Whether you write about your experiences in comments on this post or whether you write your own posts (and I hope you will share links to them in the comment section here, please!) I want to get others talking about making sense of sensory experiences in their lives as well.
We are all different. We have strong similarities. It appears that some kind of sensory non-mainstream-ness is definitional to autism. The more of us willing to share our experiences and insights, the more we can work to build larger understandings and better acceptance and accommodation for everyone.