I have been undergoing the arduous and humiliating process of applying for disability here in the U.S. for my autism. If you thought that in this day and age, there would be an established mechanism for this type of disability, well, surprise, not so much.
You can apply and submit online; however, that is where the technology stops. Thereafter, you receive what is undoubtedly a form letter with your case number on it telling you more information is needed. Also enclosed therein is a twenty-three page form (not an exaggeration) that you must fill out by hand and mail back to them in the envelope provided. You are required to do this within two weeks of receiving it.
As soon as I looked at the form, which appears not to have been changed since the Clinton administration, I realized this was not going to be something I could complete in an afternoon. Designed for people with physical and not psychological disabilities, the questions were nonetheless invasive and personal. They don’t just ask about your work history; they ask you about the most intimate details of your life, down to personal care and hygiene.
They even ask if you care for pets. My animals are a necessity for helping manage the anxiety and loneliness of being on the spectrum, but there wasn’t anywhere to explain this phenomenon (they are not, technically, service animals). I was forced to admit that I did care for pets, although I attested to needing help transporting them to and from the animal clinic, mainly because wrangling them into the carrier is a two-man job, and the two girls are, ahem, well-nourished and together weigh almost 30 pounds and have to be in the same carrier to keep them from freaking out and howling the whole way there and back.
I spent several days writing out answers to the questions in a separate notebook, trying to figure out how to effectively communicate my particular challenges on a form designed for something else entirely. I had to describe the routine I have established for self-care that must be performed in the exact same order each time lest I forget some part of it, like brushing my teeth, which I don’t mind, or showering, which I despise. Nowhere was there a place for me to explain how much harder even such basic things are for me than they are for other people.
The form was also ill-suited to an explanation of the mental exhaustion entailed in producing a neurotypical performance under constant sensory duress, which, for people on the spectrum, happens on any day that ends with a “y.” It did not have an option for being unable to concentrate under certain lighting, against certain background noise, or in the presence of strong smells. It didn’t have a section for me to account for the loneliness of being unable to be one’s true self at any time other than when alone, nor the significant personal cost associated with learning that my true self was not welcome in neurotypical society and that even my best efforts at hiding it occasionally failed and cost me friends, social groups, or jobs.
My life is pockmarked by incidents where I tried to hide my true self from everyone and still wound up unintentionally hurting someone in such a way that they “couldn’t believe” I didn’t realize it–even if they knew I was autistic. There’s nowhere on the form to put the devastation entailed in repeating this experience at regular intervals throughout one’s life, particularly when unaccompanied by any explanation as to what exactly I had said or done that was so hurtful to begin with, and despite increasingly advanced mental workarounds to try to prevent it.
I made copies of the form to practice with before finally filling out the final version, in ink, by hand, which is the only way they will accept it. I scanned the finished project onto my laptop for posterity and then dropped it off at the post office first thing the next morning, three days before the cutoff.
Yesterday, I received another form letter, mailed the day after the cutoff, telling me they still had not received my response and would decide my case on the initial information only if I did not call them “immediately.” And by immediately, they meant only on a weekday between 8:30 and 3:30 PM, which to a literalist like me was a rather glaring misuse of the word. (How about “as soon as possible”?) It came in the mail Friday, I opened it Friday evening, and Monday is a federal holiday, so immediately is not actually going to be all that immediate.
I understand that this may be a result of crossed wires and I will probably be able to clear it up once I do call them on the phone. But the irony of having to speak on the phone while hiding my autism in order to get disability assistance because of my autism loomed large. And of course, there wasn’t a place on the form for me to describe how difficult even something as simple as a phone call was for me.
The letter felt like a punch in the gut. I put the most personal details of my life on that form and you don’t even know what happened to it?
Being autistic and “high”-functioning means being invisible. You tell people you are autistic and they don’t believe you. You try to get work accommodations and have to lay bare your psychological history and even then, you’re still held to neurotypical standards of behavior and penalized when your autism prevents you from meeting them. People tell you that you don’t “look” autistic, or that they “never would have known” you were autistic, validating the fake self you have to put on to make them comfortable at the expense of the real one that you were bullied and ostracized for growing up.
Efforts to explain what it’s like to have autism are met by neurotypicals erroneously equating them with their own experiences of not “liking” crowded elevators or loud music in a store. Instead of exerting themselves to try to conceive of what it is like to be completely debilitated by things that are simply annoying to non-autistic people, they nullify them by assuming such experiences are just like their own.
For the record, being a high-functioning autistic adult is exhausting, demoralizing, and incredibly lonely. No matter how hard I tried, how forcefully I applied myself, I simply could not maintain it over the long term, and have had to quit every part- and full-time job I’ve ever had because I was completely depleted and couldn’t keep it up any more, and had started upsetting my co-workers because of my “tone” and “attitude” and was about to be fired anyway. These were followed by periods of complete mental and physical exhaustion, and sometimes even physical illness, that lasted anywhere from a couple of weeks to several months.
Nowhere on the form, even on the few pages set aside for my occupational history, was there a box to check or an option to respond to that even came close to allowing me explain this situation and why it has rendered me unable to support myself. I had to relegate it to the “supplemental information” section, which was supposed to be for expanding on answers to existing questions, not answering questions they hadn’t asked. (I used it for the latter purpose anyway.)
I was bracing myself for a denial that I was going to have to appeal. What I was not prepared for was a negation of the entire experience: “As you have not responded…”
I had responded, despite being forced to do so on a form that refused to concede that my type of disability existed, despite having to expose personal details about self care that I have never spoken about to anyone, despite having shave off parts of my disability square peg to fit into the exclusively round holes available.
I’ve been fighting and fighting for my autism to be acknowledged, if not understood. And getting that letter felt like deja vu; my autism isn’t that big a deal, someone who looks like me can’t really be autistic, and the challenges I describe aren’t all that insurmountable. I have to bend over backwards to learn and project how neurotypical people think, speak, and act, and my reward for the amount of effort this takes is to be dismissed?
I am so angry, and I am angry at everyone. I am angry at every kid that ever bullied me, at every co-worker that took something innocuous personally, at every friend I’ve lost because of a misunderstanding, at every single supervisor or supposed friend who told me I had to fix my tone or my attitude because “people” didn’t want to be around me any more.
I AM FIXING IT. You have no f—ing idea what I would look and sound like if I didn’t, and how vastly different that would be, and how it feels to have to hide who you really are ALL THE TIME. You have no f—ing idea how much it hurts to know I’ve hurt someone in such a way that I am deemed unforgivable without even knowing what I did. Because my intentions don’t matter. Only the results matter; believe me, I know. The fact that I keep this up because I want more than anything not to hurt people, and that it happens anyway and there’s nothing I can do about it, does not matter at all.
And I have to live with it. I have to live with being that person you think is so callous and selfish. I have to live in constant danger of being misunderstood and shut out, and I work ten times as hard as you to try to keep it from happening, and only manage to make it less frequent; it never completely goes away.
And it hurts, on a level so deep I can’t even describe it. I don’t want to be this way. But I’m stuck. I’m stuck overcompensating and failing. I’m stuck being the asshole, the bitch, the unfeeling, uncaring, self-centered sociopath who doesn’t deserve to belong anywhere, or to have a job or friends. And all of this turmoil is invisible because, you know, I don’t “look” autistic.
I just want to be seen. You don’t have to understand what it’s like to be me if you would just accept that it is a reality so different from your own that you may never fully appreciate it. I just want to be accepted for who I am, for what I do, for what I go through to protect your precious sensitivities.
And it feels like I never will.
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Ms. Condo, how my heart hurts for you. I know someone who’s high functioning and one the spectrum and I’ve watched her go through the exact same thing! And it’s not fair! Life’s so unfair!
And I often wonder how a loving God could allow one person to go through so much hell on Earth! Unfortunately my question won’t be answered until the hereafter.
Know that I’m behind you as are so many others! And I pray that your disability is approved and that you have the peace you so deserve!
I’d like to schedule for reblog your post on Chateau Cherie because people need to know what life is like for a person on the spectrum. I also.want to give you more exposure and for your voice to be heard be a wider audience.
Blessings to you always!
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We see you, Ms. Condo. Not all of us, not all the time…but more of each category all the time. Thank you for the fortitude to share, and thus teach. The WaPo article brought me here, and your writing kept me here. I’m just learning how to be a better team member for someone in the family who is high functioning.
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My son is autistic and on disability. One thing I can tell you about the process is that they are likely to have you go for an exam with a psychologist. The one my son went to was kind of a jackass with some preconceived ideas about autism, but it actually worked to my son’s advantage.
My advice to you is to not try to hide yourself from either the disability office or the psychologist. It’s sort of the opposite of a job interview where you want to present as neurotypical and competent. Don’t exaggerate but show them your struggles.
Also, somehow my son’s application disappeared into the system and I had some trouble tracking it down.
I hate making calls too so I didn’t call as often as I should have (every 6 weeks-2 months) but sometimes that’s what it takes. If you know anyone who has contacts within the system, that can help.
I hope you get the disability you need.
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