Come to my Birthday Party!

a person on the beach, holding baloons, leaping high with joy

Update: due to illness, I won’t be going to South Carolina for my birthday after all. If you go, have a banana split in my honor, okay? Apologies for the inconvenience. I’m still planning to visit Surfside Beach later, just not right now.

I am inviting the world to my birthday party.

I am planning to spend the first weekend in March (4th, 5th, and 6th) celebrating my 49th birthday in Surfside Beach, South Carolina. In cooperation with Champion Autism Network, Surfside Beach, which is just south of Myrtle Beach, has proclaimed itself to be the first autism-friendly travel destination where Autistic people and their families can enjoy a quieter, less crowded, family-friendly beach in a town trained to understand and accommodate Autistic people with a judgment-free attitude.

Let me know if you’re coming so we can celebrate together! Bring the kids: they are VERY welcome here! I don’t have specific plans yet, although I might be doing a presentation. I’m definitely going to have a banana split. And I’m going to check out Surfside Beach so I can report back to everyone about food choices, general atmosphere, and autism-friendly holiday resources. And I’d really love to see any of y’all there!


Autism and the Pursuit of Happiness

a confernce nametag with a blue butterfy and the words Sparrow Rose Jones Keynote Presenter Autism and the Pursuit of Happiness

This post has been moved to the new Unstrange Mind blog. Please go there to read it and other posts. Thank you! Sparrow Rose Jones


Why Sheltered Workshops Need to End


Workers in a sheltered workshop

I started traveling after two decades living in high desert. When I hit Nebraska, the humidity was stifling. By the end of June, sweltering in Missouri, I was firmly reacquainted with mosquitoes, a pest I’d been blissfully separated from for years. I needed a way to open my van windows for ventilation without being attacked by biting and stinging insects.

I found a product that would be perfect for my needs — custom-sized pieces of tent screen with magnets along the edges to hold them to the outside of vehicles, covering the windows. A brilliant idea! An idea, it turns out, that I am now crafting on my own (which means mine will be rainbow colored hand crafted art, of course) but would have rather just purchased. In fact, I put a pair of them into my online shopping cart but before I could buy them, I noticed the words on the website declaring that the company was proud to be making these products in a sheltered workshop.

I will not support sheltered workshops. Not only did I not buy the screens, I emailed the company and opened a dialogue with the owner:

I was about to buy a pair of these – amazing product and exactly what I need – when I read this on your site: “Manufactured locally in partnership with a Missouri Sheltered Workshop.”

Does that mean the people who make these aren’t paid minimum wage for their work? I can’t buy these if the people making them are being exploited. What are the conditions in this sheltered workshop? Is it like the Salvation Army sheltered workshops where people work all day for just a few dollars?

I need to know what my money would be supporting if I bought a set of these. They are so awesome, but I can’t commit until I know.

The business owner got back to me quickly and, of course, defended the company’s choice of sheltered workshop labor:

We are very proud to be utilizing the services of a local Sheltered Workshop, which by definition means “a private non-profit, state, or local government institution that provides employment opportunities for individuals who are developmentally, physically, or mentally impaired, to prepare for gainful work in the general economy.” How effective these institutions are has been a long debate but one must look at it on a more personal level to see the value….what if I were mentally challenged, or my child, to where I could not hold a job in the ‘normal’ workplace? I know I would certainly appreciate the opportunity to be made to feel productive, earning a paycheck would be a bonus;)

It is a very nice facility located just outside of Springfield Missouri. They conduct work studies every year to reevaluate the time it takes them to do all the things required to manufacture our product, sewing, cutting fabric, counting magnets, processing orders and creating the labels for shipping, then we are invoiced according to the guidelines set by the Department of Labor. You can rest assured you will be helping a good cause whenever you buy [our product].

So I wrote back:

Thank you for your prompt and courteous reply.

I don’t have to imagine what it would be like to be disabled and unemployable. I am developmentally disabled and after years of struggle to try to keep a job and periods of homelessness due to being unable to support myself, I now live on social security disability. I am fortunate to be able to drive and I live in a minivan which I have made into a cozy home for myself and my cat. (Thus my interest in window screens.) It is the highest quality of living I have ever found on my fixed income.

Vocational rehabilitation was unable to assist me in employment and several times I have been pushed toward a sheltered workshop as my “only option,” sometimes with hints that I would lose my disability payments which I rely on to survive if I did not show that I was willing to try to work by taking one of these very low paying jobs. With proper supports, I am employable, but the existence of sheltered workshops meant there were not programs available to support me in employment that pays minimum wage or higher.

It is not about pride in feeling productive and the “bonus” of a very small paycheck (I could make more money selling my blood than working in a sheltered workshop and, for a time, I did sell my blood to make ends meet.) It is about government programs that bully people into working in places that are legally allowed to pay pennies for the labor — like the workshop that makes your products, I’m sure, based on the wording of your response. That cheap labor keeps your costs down and increases your profit margin so of course companies think sheltered workshops are a fine thing.

Although sheltered workshops are promoted as transitional work, studies have shown that moving disabled people straight into supported employment has better outcomes: more workers are able to achieve and maintain supported employment in the long run when moved straight into it than when sheltered workshops are used as a stepping stone. Supported employment costs the state less, workers have higher pay, and workers are more successfully integrated into the community rather than segregated. The main reason sheltered workshops have not already been abolished is that companies who benefit from employing workers paid sub minimum wages have lobbied to keep the workshops in place, arguing that they are needed because “no one else will employ these people” (despite studies showing otherwise.)

I can’t applaud American workers getting paid $1/hour. Disability activists have been lobbying to abolish sheltered workshops for years now and as much as I need window screens, I can’t abandon my strongly held political and ethical beliefs that the workers who make my screens be paid at least minimum wage for their time. I will continue to sleep with my windows rolled up while I look for something else to protect me from the mosquitoes up here in northwestern Missouri where I am currently camped.

Thank you for your time and honesty.

I wasn’t surprised that the business owner did not like my response. But she was very polite, much to her credit.
You obviously know from first hand experience what would be the ideal alternative then, other than what our government has designed. We actually were trying to use the services of “professional seamstresses” but the job was too mundane or repetitive, so we went through one after another, after another. We were thinking we might need to look at China for production, as much as we did NOT want to promote their welfare, when someone suggested we look into the Sheltered Workshops to see if they might be interested in the tasks needed to produce [our product.] We felt it was a win win, keeping the dollars here, keeping them in our own state, and helping the disabled. I wish you well in your travels and hope you find a solution that will work for your needs.

As I pointed out to her, our government does not always have the best ideas or our highest interests in mind. I had gleaned her political stance from the way her business page was worded, so I turned to a voice I discerned she would trust enough to listen to: Ronald Reagan. “The most terrifying words in the English language are: I’m from the government and I’m here to help.”

Once I reminded her that her own political stance is one that does not thoughtlessly trust the government but always looks toward the greater good, she seemed to be more receptive to my words. We ended the conversation on a high note, with her agreeing with my statement, which she called well-spoken: “If you want to help the disabled, support self-advocacy and integration in the community with supports. Don’t assume the government has the best interests of the most vulnerable members of the population at heart. It rarely does. The almighty dollar is king and justice is only served when it is expedient to commerce.”

The company still uses sheltered workshops, but hopefully I’ve given the owner something to think about. She was right: I do know the “ideal alternative” and it is expedient to commerce as well. What is holding us back from improving the labor situation for disabled people are misplaced emotions and feel-good legislation.

The ideal alternative to sheltered workshops is supported employment in the community. Supported employment costs the government less and has a net benefit for consumers. Supported employment is better for teaching work skills and endurance. Supported employment integrates disabled workers into the larger community rather than keeping them isolated away from the rest of society.

The business owner with whom I corresponded said that they offer people “the opportunity to be made to feel productive,” and that if she or her child were disabled, “earning a paycheck would be a bonus.”

The work I do — writing, presenting and also the craftwork I do, making jewelry and hats, the art I draw for t-shirts or book covers, the music I compose and record — is such satisfying work that I would still do it if no one else valued it enough to pay for it. In fact, it is work I did do without pay for several years before I began to see income from it. The fulfilling nature of the work and the joy of building my own business have sustained me through times of extremely sub-minimum wage income from it. But that has been my choice.

Vocational Rehabilitation has often been at a loss as to what to do with me. Or about me. Rarely for me. I have gotten the subtly threatening letters and phone calls that hope I will interpret them as commands rather than suggestions. I have experienced the efforts meant to herd me into a sheltered workshop, banking on me being so afraid of losing my disability benefits that I will hand my life over to someone else to do with as they will. I have faced the pressure to take an extremely low-paying job “cutting fabric and counting magnets” to mass-produce someone else’s design in a legal sweatshop. If I had a parent like the business owner with whom I communicated, I would have gotten pressure at home to yield to the coerced labor as well.

Think for a moment about the protests against companies like Nike. Sensitive, compassionate, progressive Americans decided it was unethical to purchase products made by people with so few options they were a captive workforce for the pennies per day wages they earned in the repetitive, mind-numbing work required to create designer shoe and clothes for people who paid thousands of times the labor cost in order to own elite brands.

But somehow all of that is okay when the people being exploited are disabled Americans instead of impoverished citizens of a developing nation. Worse, people in developing nations who work in sweatshops are often the wealthiest members of their society while disabled Americans who work in sheltered workshops are among the poorest in theirs. Even worse, sweatshop conditions at sheltered workshops are defended on the grounds that they are beneficial for the exploited workers, a sort of occupational therapy that will allegedly lead to higher self esteem and a sense of connection with a community one is not privileged to participate in beyond the exploitation one receives at its hands. How is this even still legal, let alone right?

This is not work that is so fulfilling one would continue to do it for free. This is not work that gives a sense of ownership. This is glorified minimum wage labor that is being paid at rates so far below minimum wage that undocumented migrant farm workers make more money per hour than many sheltered workshop participants. The thing I find most confusing about sheltered workshops is that there aren’t more people angry about how our system is treating some of the most vulnerable members of our society.

Supported work within the community teaches people how to get, keep, and flourish in jobs. Supported work within the community helps disabled people to be more active in and in touch with other people — all kinds of other people, not just other disabled people and the professionals employed to supervise them. And if the work is some of that boring, repetitive work that many of us do or have done but few people really enjoy, it’s okay because the worker is getting a fair wage (or as fair as wages ever get in America) and not being coerced into doing it for pennies because it is supposed to be good for them or a great place to learn.

And, by the way, sheltered workshops are not a great place to learn how work works. Over the last half decade or so, federal policy makers have been moving away from the sheltered workshop model (so why are there still so many sheltered workshops out there?!), largely for the simple reason that it does not work.

In a 2011 speech, Deputy Assistant Attorney General Samuel R. Bagenstos said, “when individuals with disabilities spend years— indeed, decades—in congregate programs doing so-called jobs like these, yet do not learn any real vocational skills, we should not lightly conclude that it is the disability that is the problem. Rather, the programs’ failure to teach any significant, job-market-relevant skills leaves their clients stuck. As a recent review of the literature concludes, ‘the ineffectiveness of sheltered workshops for helping individuals progress to competitive employment is well established.'”

Bagenstos works in the Civil Rights Division of the Department of Justice. He knows the score here. So why are so many communities and people still clinging to sheltered workshops? It’s time for a change.


Disabled? I Am Legend!


image description: the movie poster for the film “I Am Legend” with the author in a purple dress superimposed over the protagonist and Fermat the Wonder Cat superimposed over the prodogonist.

“Personally I don’t believe in the word disabled. I feel it has a negative connotation and it’s just not part of my vocabulary. But that’s just me.”

<sarcasm> Yes, I can see your point. Disabled is such a negative word and should not be part of my vocabulary, either. I believe in using only positive words in my self-identity so…..what to call myself now?

Hmm.. Henry? No, that is a very positive word but it’s already taken. Shoe tree? I like that one a lot, but you know, I think we can go just a little bit more positive. Wait, wait, I think I have it.

LEGEND! Now there’s a positive word! I am not “disabled.” I AM LEGEND!

Yes! If you have been cringing every time you see or hear the word “disabled,” please feel free to refer to me as legend instead. Much more awesome, right?

Since I have you here, can I talk a little bit about the word “disabled” now? We’ve removed it from our vocabularies so you shouldn’t feel threatened about a little chat. It’s an obsolete word now. Archaic. Outdated. So last week. All that negative energy and power has just been whooshed out of it, so let’s talk about this deflated word that can’t hurt us any more.

What does it mean to say “I am disabled”? It’s an adjective, like pretty, clumsy, white, clever, and so on. More specifically, it’s an adjective made out of a participle form of a verb: to disable. Present participle adjectives show that something is being done (e.g disabling) and past participle adjectives show that something was done to one (e.g. disabled).

So the real question here, is this: if I am disabled, who or what has done the disabling? This is not just grammar and semantics. This is a really important question because so much of the fear and loathing directed toward the identity label “disabled” stems from a lack of consensus about the answer to this question.

When I say “I am disabled,” I do not actually mean that I am disabled BY autism. I am not disabled BY Ehler-Danlös Syndrome (EDS). I am not disabled BY hypernychthemeral syndrome (N24). These are all things I experience and things that contribute, each on their own level, to my sense of identity. I am Autistic. I do have EDS and N24. And in the case of EDS and N24, there are very clear impairments that are challenging for me to live with. I have unstable joints that cause pain. I have a disrupted circadian rhythm that causes difficulty in syncing with the rest of the world and frequently leads to exhaustion so chronic it’s hard to function.

But what is disabling me are things like ableist attitudes that want to reduce me to a burden or an object suitable for crafting inspiration porn. (Believe me, I find it pretty inspiring to wake up on time but I really don’t want to be pictured in a meme for managing to make it to breakfast on time. Which, in case you were wondering, happens maybe four times a year, at best.)

What is disabling me are barriers to access — social events with too little structure and too much noise; masses of stairs with no elevator or with an elevator that I am told not to use because I am able to walk; evening classes in very brightly lit rooms using red markers on a whiteboard that I am unable to see through my circadian therapy glasses. And attitudes about those access barriers that pile them even higher rather than lower them sufficiently for me to enter the social arena, the workplace, etc. “Well, you look just fine to me. You can stop on the stairs to rest.” “Be grateful that you can walk at all. I’m not here to pamper you.” “That noise isn’t so bad. Just tune it out. You’ll get used to it.” “My blue marker is dry. Take those tinted glasses off and you can read the board, too.”

My autism does come with some intrinsic difficulties, but they are nothing compared to the difficulties that come from living in a world that would rather people like me go through therapies designed to help us pretend we are not who we are so that others can be more comfortable being around us. EDS hurts every day but it doesn’t hurt anywhere near as much as it hurts to be excluded by others who diminish my difficulties and grow impatient with me for being slower, doing less, and needing help. N24 can be frustrating and depressing, especially during those times when I’m stuck only awake at night and only asleep in the daytime. I miss the sunshine. But what is even more frustrating and depressing is when my social isolation is compounded by a lack of understanding or even a desire to try to understand. “If you just got a better alarm clock.” “If you just tried harder.” “If you really wanted to be at my birthday party / wedding / barbecue you would have gone to bed earlier the night before.”

When I say “I am disabled,” I am not saying that I am broken or defective or lacking something. I am not even referring to the impairments I have, real and challenging though they are. When I say “I am disabled,” that is shorthand for “I am disabled by a society that is so caught up in its warped visions of success, beauty, and what makes a human being valuable that it rarely even sees me and when it does see me, it would rather pity me or be falsely and objectifyingly inspired by me than reach over to pull a chair up to the table so I can join in with the rest of the human race.”

Fortunately, however, I don’t need to say any of that anymore.

Because from now on, I am not disabled.


(I would close the sarcasm tag, but it seems as pointless as making my bed every time I wake up, knowing I’m just going to lay back down and mess it up again in a few hours.)

Making Sense of Sensory — Part Three

Retinal neurons

“Structure of the Mammalian Retina” by Santiago Ramon y Cajal, c. 1900

“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 is about the things that make my life easier or more difficult, both with respect to hearing and generally concerning how I am treated. It is the case for every one of my senses that anything that increases m stress level also increases my difficulties with sensory processing and overload.
Part Three (this post you are reading now) is about my experience of the visual world.

Vision is possibly my second most important sense when it comes to integration issues. There are a number of things that overwhelm me, visually. I am privileged to be able to drive a vehicle safely, but I have many Autistic friends who cannot drive and visual processing is one of the bigger reasons why they can’t do it. (Difficulties with executive function or with rapid decision-making also rank high in the list of reasons why some Autistics cannot drive.) When I am tired and my vision begins disintegrating beyond the usual level, my visual processing is often the first sign that I need to get off the road and find a safe place to rest for a while. I like having this built-in warning system.

The most overwhelming visual sensation for me is rapid motion. This doesn’t affect driving a van, even at 70 miles per hour, because the kind of motion that overwhelms me doesn’t happen out on the road (although a storm can cause some visual distress if there are lots of things flying randomly around in the air. At that point, however, I tend to have bigger issues than visual processing to cope with.) There are two major categories of overwhelming motion: things that look like they’re coming at my face and things that mill around in a sort of Brownian manner. In the latter category, I include children. I am great with one kid, great with two kids, tolerable with three kids, completely overwhelmed with four or more kids. Imagine a children’s birthday party — they’re all gleeful, running from place to place, high on sugar, milling about randomly and at high speeds (usually with accompanying distressing sounds at that point.)

Lots of running, playing children remind me of bubbles in a boiling pot. They are random, unpredictable, and I can feel my anxiety levels rising. It has nothing to do with liking or disliking children — I love them, actually. but all that group moving around throws me off-kilter. Another rapid movement that is hard on me are those disco lights that spin around, casting spots of light all over the room. Even though there is a mathematical orderliness to those lights, the effect is random enough to set off my anxiety. I don’t have photosensitive epilepsy, but many of my friends do, as well as my late fiancé. I’ve met some Autistics who really love chaotic light and sound environments, including Rave parties, but I’ve met far more of us who can’t handle lots of fancy lights well at all. It’s better to err on the side of caution and not use flashing or spinning lights around us, but if you want to throw a party with overwhelming lights, make it clear what the lighting will be like and you may get some of those Autistics who need lots of extra visual stimulation coming to your event.

Think of sensory input needs as containers. An average person with a fairly mainstream set of sensory needs would have, say, a big 12-ounce beer glass for senses to collect in. They might get excited and happy when their glass overflows a little or they might find it unpleasant and back away from it, but most days of their lives their sensory inputs are just right to keep their glass sufficiently filled but not over-filled.

Someone like my friends who love Raves has a big bucket for sensory input. They want more input than people tend to get on an average day because they are so often walking around feeling like their visual bucket is echoingly empty. They might seek out flashing lights, bright colors, swoopy movements, and other visually stimmy things to fill up their bucket some more. They feel most comfortable when their buckets are filled but not overflowing, similar to the people who only have a beer glass to fill.

Someone on the other end of things — someone who gets visually overwhelmed like me (or much more than me) might just have a little espresso cup or some other very small container. The regular level of visual stimulation that makes beer glass people feel comfortable is way too much for someone with a demitasse. Everyday visual stimulation overflows and continues to pour out across the floor, leaving the person feeling overwhelmed and anxious.

I don’t quite have a demitasse, but my visual container is definitely smaller than a beer glass. I have, maybe, a juice glass of space for visual sensory. I love bright colors, but I get overwhelmed by too many of them (grocery store shelf.) My brain often interprets things coming toward my face as a threat (typical for many people) but reaches too far and misinterprets things that aren’t coming at my face as if they are. Also, I don’t just flinch from things coming at my face but I get a burst of adrenaline and a long-lingering anxiety afterwards. I can see things clearly to drive, but when I get tired the road starts to look like it is moving backward. I am quick to spot birds and other wild creatures when I’m out in nature but I often find myself on the trail watching for snakes and getting nervous because I am having such a hard time processing sticks and roots and leaves and rocks and other visual ground jumble quickly enough to see if there are snakes or fire ants or ankle-twisting holes in the ground along my path. (As a result, I walk a bit slowly in nature, which is not entirely a bad thing.)

When I walk  into a room, especially a room I am unfamiliar with, I have to pause to let my eyes figure out what’s in the room. Sometimes this frustrates people I’m with as they want to go on in, find their seat, move forward with their day. I am blocking their way because it takes me a while to even figure out what is a seat. What is a table? What is a coat rack? What is a counter? What is a person? I know it sounds terribly stereotypical, but quite often I don’t see people at first and they gradually emerge from the visual chaos of a scene. I have walked right into people.

I’ve considered this situation to try to understand why it is that my vision can be so unreliable in some instances yet reliable enough to go birding or drive a vehicle in other cases. I think the big thing with driving is that the roads are so standardized. My brain knows what sort of visual patterns to expect and can sort them out quickly because a road is a road is a road with very little variation from Wyoming to Illinois to Louisiana. A room can have an infinite number of variations that must be sorted out visually. I can see everything there is to see, but I am noticeably slower at it than most people around me. The trade-off is that I seem to see more than most others, once my eyes and brain have had a full conversation about what we’re looking at.

Another difference I’ve noticed between my visual processing and that of many others is that I don’t see a lot of optical illusions. Often someone will post a picture and people respond with comments about it spinning wildly and making them nauseated and I look at it but don’t see anything moving at all. Dr. Olga Bogdashina wrote in Sensory Perceptual Issues in Autism and Asperger’s Syndrome that Autistic people often have “optical disillusions,” in that many of us are not visually fooled by optical illusions.

“Feigenberg (1986) suggests that what we see (feel, hear, etc.) is mostly something we are expecting to see (hear, feel, etc.) The brain does not need to process all the stimuli; it just ‘fills in the gaps’ and ‘predicts’ the final picture. That is why we are prone to illusions. The ability of the brain to ‘see’ before actually seeing is not restricted to vision. The same can be observed with other senses, for example, we can ‘hear’ or ‘feel’ what we are expecting to hear or feel.” Bogdashina, Sensory Perceptual Issues, p. 47

It seems to me that this is the benefit to the way I process visual information. I don’t fill in the gaps and predict as much as a non-autistic viewer does. It means it takes me longer to process visual information but it also means that the information that gets processed is somewhat more accurate a representation of what is actually “out there” in front of me as a result. Sure, I can still be fooled. This video, for example, fooled me the way it’s designed to fool everyone:

When you follow the instructions and don’t know what to expect, it will probably fool you, too. Now that I’ve seen the whole video, it doesn’t fool me. It can’t fool me – because I know.

As you can see, my visual issues are not as difficult as y auditory issues, but I still struggle with them. It is the slowness of processing that bothers me the most. I’m sure I miss out on a lot of opportunities because I don’t see them quickly enough. I prefer to be out in the country rather than in a city where things are moving around so much more quickly. I can’t handle crowds of people very well.

But I see amazing things that delight me every day. I see things that others pass by with barely a glance and I revel in them. When it comes to my visual processing, I mostly don’t see a problem because the trade-offs are so fulfilling for me. I imagine I might feel differently if my processing issues precluded me from driving a vehicle.

I’d love to see a conversation about visual processing in the comments here. Please do consider joining in the discussion and don’t feel that you need to agree with me or have processing like mine in order to participate. Thanks!





Making Sense of Sensory – Part Two

cochlear nerve

Image description: plate 928 from the 1918 edition of Grays Anatomy, depicting a diagrammatic longitudinal section of the cochlea.

“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.





Making Sense of Sensory – Part One

A drawing by Rene Descartes of the Dualism of Mind and Body meant in this post to represent the senses and sensory issues

Image description: A drawing by René Descartes, depicting the dualism of mind and body, used here because it has an old-school science look going down with muscles and eyeballs and dotted lines and numbers so it kind of has an appropriately creepy Borg-like connection to talking about the senses and what they feel like.

“What does it feel like to have sensory issues? What makes them better or worse?”

I have this thing, where I am asked a question and it takes me fifteen, twenty minutes (sometimes more) to answer it, talking the whole way through. In conversation, it’s a bug. In public speaking, it’s a feature.

Then I get the question that momentarily silences me — not because I can’t answer it, but because I can’t answer it in fifteen or twenty minutes unless I write it out first. I write much better than I extemporaneously speak. And I speak better when I’ve written on a topic first. Words are bricks and I have to build ideas with them a few times in writing before the right phrases will find their way out of my mouth later.

So this is my first attempt to answer that question. What does it feel like to have sensory issues and what makes them better or worse? These will not be concise essays. I am going to ramble my way through this topic and I invite you to come along for the ride. I’m feeing out the concept of feeling. The concise, polished prose comes later. This series of posts is pure excavation — digging around in my life and seeing what I can pull up from the grates.

The first thing that absolutely must be said on this topic is that I can only talk about my own profile of sensory issues. Sensory issues are like fingerprints — all fingers have swirls and whorls that look similar but each has their own pattern. Similarly, different people have different sensory needs. Writing out my thoughts will only help me get so far in explaining autistic sensory issues  because it’s not something I could do single-handedly. It will take many Autistic voices to explain sensory issues because we all have them but our swirls and whorls vary from person to person.

I once knew a married couple, both Autistic, who had conflicting sensory needs. He was routinely auditorily understimulated and she was routinely overstimulated. They had to plan their life carefully so that he could get the loud sounds and sonic-bodyfeels he needed and she could get the pristine silence she needed. That’s a difficult combination that needs a lot of love and patience to accommodate.

The next thing I feel strongly about saying is that, even though I’ve been known to use the phrase myself, I have hesitations about the  phrase “sensory issues.” I spend a lot of time in nature and I’ve come to realize that few of my sensory issues are actual sensory issues so much as issues with the way my local culture has shaped our environment in this particular corner of early 21st century, North American space-time. Most of my alleged sensory issues are not issues when I am out in the woods or desert or mountains or marsh or wherever I happen to wander. My primary “difficult senses” – hearing and vestibular – give me difficulty nearly everywhere. My other “sensory issues” don’t bother me when I’m “out a ways” from cities and towns.

There are still noises in nature that are hard for me. Sandhill cranes, for example. Having never met a sandhill crane before this month, I was surprised to learn that their call is roughly at a location on the Pain Scale half-way between a store-provided power chair backing up in an echoing warehouse grocery and a passing fire engine siren. Three sandhill cranes were in my cousin’s front yard and began shouting in unison. I’ve never felt so injured by bird song before.

And vestibular issues are harder for me when walking than when driving. One reason I love to drive is that I feel so graceful. I am much better with controlling the steer of a wheel and the timing of a pedal than I am with controlling my gait. Walking, I feel awkward and fear I might look a little drunk. Driving, I am Peggy Fleming.

But, other than stumbling around to escape the noise of sandhill cranes, my senses are not assaulted in nature; they are soothed. Shinrin-yoku — “forest bathing” — is a balm to my spirit. The forest is a sensory blanket that loosens my knotted shoulders and opens my lungs to air so satisfying it feels as if I’d been holding my breath for days.

Most of my sensory “issues” would not be significant enough to notice if I lived in a quieter, slower, less populated piece of space-time. Were I living in human pre-history, I might not be considered to have sensory issues at all. It might be that I would instead be recognized as a person with some senses tuned exquisitely fine and the community might value and support me for those delicately tuned senses. But I live in the here-now, so this is what it feels like to be me:

My hearing is the most fine-tuned and the most problematic of my senses. I have heard bats echolocate. Not squeak (I heard that, too) but the actual echolocation sound. I can only hear it in the very lowest range (bats go up to around 100,000 Hz. I can hear up to around 25,000 Hz. Bat echolocation goes down as low as 14,000 Hz.) but I can hear it. Having hearing up to such high pitches meant that it took me years to be taken seriously when I said I couldn’t hear human speech very well.

Many people lose hearing in the higher end of their range as a result of time and aging. When I complained that I often couldn’t understand speech, but my hearing tested as better than perfect in the high range, I was sent away with, “maybe you’re imagining it.” But the difficulty never went away and now I understand it by a name: central auditory processing disorder. I usually shorthand-explain it as “kind of like dyslexia of the ears.” It’s neurological. I have a great ear for music but words get jumbled. Sometimes I shorthand it even more into, “I’m hard of hearing. It helps if you face me when you talk to me.”

On top of all that, I have vestibular hyperacusis. This one has a shorthand, too: it’s like a kind of synaesthesia where high-pitched sounds get perceived as motion. SOmetimes it’s a leasant motion but more often it’s a harsh, nauseating jerk. Oh, also those sounds hurt. I used to say “loud sounds hurt,” but years of self-observation have changed that to “high-pitched loud sounds hurt” because I’ve discovered that I’m fine with loud low-pitched sounds and I especially love listening to bass guitar or deep drums (not high pitched snares) at volumes loud enough to feel in my body as much as hearing in my ears.

But I’m supposed to be telling you how it feels to have this combination of hearing/vestibular sensory defensiveness.

Squeaking door hinges hurt. Beeping cash registers hurt. Whistling teakettles hurt. That humming sound fluorescent lights make hurts.  Sirens hurt. Doorbells hurt. Forklifts driving in reverse hurt. Garbage trucks backing up hurts. Salvation Army bell ringers hurt. My cell phone hurts. The beep my car makes when I open the door with the lights on or the keys in the ignition hurts. Fryer timers in fast food restaurants hurt. Loud motorcycle engines hurt. Sudden laughter hurts. Intercoms hurt.

The world hurts.

All sounds happen at all times. You know those games people do where you have to tune in to your auditory surroundings and list off five or ten things you can hear? I don’t like those games because they aren’t fun for me because I’m already tuned in to five or ten or maybe twenty things I can hear all the time. That’s great in the high desert, where I’m hearing the wind in the sagebrush and the crumblerustle of a snake heading down his hole as I pass through his territory. A mockingbird is singing in a scrubby tree and in the distance a marmot is calling a warning about me to his colony.

But in town, it’s thirty people talking at the same time, a waterfall of noise sending up an obscuring mist of word cloud. And there are dishes clattering back in the kitchen. And the door opening and closing. And the cash register blinging and churring. Lured in by the promise of all-you-can-eat cocktail prawns, I leave with indigestion from processing all the noise, only a few shrimp eaten.

Or it’s ten people talking at the same time punctuated by an espresso machine shlurbling. Coffee cups are clinking together and music is playing in the background on a stereo but a local customer is strumming on a guitar at the same time. Someone is kicking their chair in a rhythmless thump, matching neither the stereo nor the guitar. Slurping. Clicking. Shuffling. And the door opens and closes. A new batch of loud entries and departures and the sound swirls back around on itself again.

The combination of all these noises is deafening. It’s hard to be in the coffee house when I’m not drumming. Everything answers to the drum. The drum is the heartbeat at the heart of it all. When I am on the drum and it is pounding through my body and steering all other sounds into its wake like a gravity well pulling comets through the night sky. I feel power. But the drum is also a servant to the music, following where it goes. Endlessly chasing its tail, the drums wrap around the outside and hold everything together, including me. I feel right. I feel whole. I can bear to be inside the coffee house.

What it feels like is that you talk too loud and I have to back up from you (two steps if you also have a strong cologne on.)  What it feels like is that the world is a noisy and chaotic pace I have to prepare myself to enter. What it feels like is frustration, because I hear too well to feel comfortable and not well enough to connect with the world of people. What it feels like is embarrassment to ask for captions (even though they make the difference between me enjoying the show and me being completely lost or bored or struggling so hard to understand that I’m exhausted for hours afterwards) because I know hearing people hate them so much and I will feel like I’m needy and demanding and putting everyone else out and ruining their enjoyment of the show. It’s better to ruin just my enjoyment than everybody else’s, I think, and make myself small, and smile when others smile and nod when they nod and laugh when they laugh . . . . or just wander out of the room when everyone else is caught up in he show, looking for something else to do.

In my next post, I will either talk about my next most intense sense or I will talk about what makes hearing better or worse for me, or maybe I’ll talk about something else entirely.