Hidden Disability

A brief anecdote from my real life as an autistic adult coping with chronic pain and peripheral neuropathy…

After walking around a big box store to get supplies yesterday morning, I spent the rest of the day almost completely offline and confined to bed.

If I’m rested, I can walk into a big department store and its rows and rows of questing seeming physically hale. If I’m in a good mood and music is running through my head, there might even be a spring in my step.

The moment doesn’t last. Trudging row after row while navigating my cart through a crowd of other carts and minds awakens the paresthesia, fasciculations, tinnitus, anxiety, adrenaline, and pain.

I use my cart as a walker to get through checkout, trying not to pass out while negotiating social boilerplate in a barely verbal state—under concerned eyes.

I make it to the car, collapse in the seat, and submit to gravity and the flood.

I stim the sensory flood away with singing, scatting, rocking, and flapping—casting the overwhelm through fingers and palms, flinging beams of paresthesia and sensation out of me.

Music helps, and time.

Overwhelm subsides. My muscles stop boiling enough to drive.

I make it back to where I can lie down and cope through the rest of the day.

My legs are made of gravity and pain. The cramps will come, spreading from arches and jaw through voluntary muscles like wrenching wildfire.

Music will help, and time.

A lot of people have contacted me to say that they’ve struggled with well-meaning people saying, “I have that too”, when they’ve tried to explain what it’s like to have autism. And it’s not just people with autism, but people with other hidden disabilities too.

I know I worry that people don’t believe me. I’ve been around NTs who don’t know my diagnosis as they say, “Oh everyone has something these days! It takes nothing to get a diagnosis! It’s just fashionable!”

I know some people think that. And I worry that people will think that all my difficulties are made up because I’ve hidden them so well.

Acceptance is better than empathy, especially empathy that is getting it wrong. The thing you’re trying not to do? You’re doing it. We don’t hate you for it. We love that you’re trying. But you’ve just stopped us sharing. You’ve just shut it down. And I don’t think you meant to, I think you want to hear what I have to say. I think you care.

“I do that too” The great miscommunication – Autism and expectations

Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

Source: The Spoon Theory written by Christine Miserandino – But You Dont Look Sick? support for those with invisible illness or chronic illness

Nobody noticed my invisible struggles, my sensory sensitivities, my poor coordination, lack of organization, and troubles making friends. The social things always were dismissed as long as I kept everything else in line. I was “too smart” and “lazy” and a million other names.

Source: Autism or Asperger’s? | Anonymously Autistic

“Aspie burnout” is a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to “be normal”, fit in and keep up. Here, I think it is very useful to draw peoples’ attention to Christine Miserandino’s ‘spoon theory’: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ because when I read it, I saw such immense parallels with living with Asperger’s/autism. It can creep up on you, it can hit any time, but for sure, most Aspies will have experienced Aspie burnout by the time they hit 35.

Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.

When you hit burnout, you can take a long time to recover.  Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards.  So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge.  And once you burnout, your coping capacity is diminished.  That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.

Source: Aspie Burnout | Planet Autism Blog

It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.

Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.

Source: Burnout | autisticality

I often bring up the ableist action of harassing/accusing ambulatory wheelchair users (as well as scooter, walker, crutches, and cane users) of “faking” because it’s something that happens ALL the time under the guise of “allyship” that people seem to WANT to remain oblivious to.

A person standing up from a wheelchair or standing without their mobility aid SHOULD NOT be cause for alarm, should not inspire accusations of faking, should not inspire you to say, “it’s a miracle!” in a mocking tone, or to ask me if I should “really be parked here”, or recommendations of weight loss so I won’t “need that chair anymore”, or whispering about how my karma is coming or how I’m going to hell for “playing with a wheelchair”; all comments I’ve received from strangers for just standing in public, getting my chair out of the trunk of my car on my own, or doing something as minimal as riding my chair while being young and smiling.

It’s prejudice; it lacks understanding to how diverse disability is, it uses a singular representation of wheelchair users to judge all wheelchair users. When people are called out on that ableism, those who do it will become defensive and claim to be acting in defense of disabled people because they truly deeply believe in the myth of a “faking disability epidemic”, but hear this: non-apparent disabilities/invisible disablities, etc. are REAL disabilities and you are harassing the very people you are claiming to be advocating for.

Source: Annie Elainey – Standing Up From My Wheelchair in Public – Standing Up From My Wheelchair in Public

Ableist discrimination and bigotry materialize in countless ways, but talk to anyone whose disability isn’t immediately obvious and this kind of story pops up again and again. Encounters turn bad because a random individual—sometimes in a position of official authority, other times just a meddling onlooker—decides someone is getting away with something. They cry “fraud.” They demand proof. They seek to restore order. Such incidents often result in humiliation or forced disclosure. Worse, as in Minnesota, they can spark violence and trauma.

Anyone who uses accessible parking but who doesn’t look sufficiently disabled or who only uses their wheelchair sometimes has encountered the “Good Samaritan” stranger who demands that they prove their disability. It happens a lot in parking lots, because accessible parking spaces are hotly contested proving-grounds for disability.

We need to learn to expect disability. There’s no one way to look or be disabled. When someone asks for an accommodation, believe them. If someone is behaving in an atypical way, pause to reflect whether there might be a disability-related reason. Or just lighten up. Humans are diverse. We do things in our own unique ways.

Source: When Disability Is Misdiagnosed as Bad Behavior – Pacific Standard

I can walk when I must. I can push myself through as much as 20 minutes of standing and walking, but the cost is great. I need the rest of the day to recover from such a reckless waste of spoons.

I sometimes long for a wheelchair. Far from being confining, a wheelchair would be liberating. I could stim with movement. I could save some spoons. I could stay below my diminishing thresholds.

I dread the moment of rising from the chair in front of others, though. Getting up from a wheelchair to navigate an inaccessible threshold, reach for something, or simply stretch does not compute for our ableist societies. You are judged a fraud, a fake, someone trying to get something you don’t deserve.

A wheelchair is in my future. Without one, I can’t go on outings with my family without melting spoons. I can no longer push past the shrinking limits of my endurance. I’m using a rollator now, but it can be slow, uncomfortable going. Even with rollator assistance, walking is a struggle with pain and gravity. A wheelchair would be enabling, but using one involves a direct confrontation with systemic inaccessibility and ableism. Am I up for it? My body becomes more and more convincing about its need for a chair, but I am reluctant to put up with more ableism than I already experience.

Wheelchairs are the symbol of disability. Transitioning to visible disability would avoid some invisible disability tropes, but those would be replaced by other tropes. And the moment I demonstrate that I can still, for now, walk, that symbol becomes an indictment.

Source: Transitioning from invisible to visible disability – Ryan Boren

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