{"id":596,"date":"2019-04-12T11:53:54","date_gmt":"2019-04-12T17:53:54","guid":{"rendered":"https:\/\/cdd.health.unm.edu\/autismportal\/?p=596"},"modified":"2024-02-16T12:58:13","modified_gmt":"2024-02-16T19:58:13","slug":"lets-start-at-the-beginning","status":"publish","type":"post","link":"https:\/\/cdd.health.unm.edu\/autismportal\/2019\/04\/12\/lets-start-at-the-beginning\/","title":{"rendered":"Let\u2019s Start at the Beginning"},"content":{"rendered":"\n

Written by Carita Gould<\/em>
<\/p>\n\n\n\n

Hi!\nMy name is Carita Gould. <\/p>\n\n\n\n

I\nhave a couple of things to tell you, but let me give you a picture of who I am\nfirst.<\/p>\n\n\n\n

I\u2019m\na young woman with red hair and blue eyes. I\u2019m short - four feet, eleven and\nthree quarter inches, to be exact; my own height taunts me. I\u2019m quiet in\nperson, especially around those I don\u2019t know well, and I\u2019m often lost in\nthought. I spend a lot of time inside \u2013 playing video games, surfing the web,\nand (no points for guessing) writing. I\u2019m working on getting a Bachelor degree\nat UNM \u2013 I want to be a video game designer someday.<\/p>\n\n\n\n

I\u2019m\nalso what most people would classify as high-functioning autistic.<\/p>\n\n\n\n

Would\nyou have guessed I was autistic upon meeting me? Maybe, maybe not. As an\n\u201cautist\u201d, the way my symptoms manifest can be subtle. You might have been able\nto guess by reading the description above, and if you had, you would probably\nhave guessed I was high-functioning.<\/p>\n\n\n\n

But\nthere\u2019s a problem with that.<\/p>\n\n\n\n

When\ndiscussing and describing autism, the community often uses the terms\n\u201chigh-functioning\u201d and \u201clow-functioning\u201d. These are loose terms, not strictly\ndefined by diagnoses, that are often used to refer to the severity of the\nsymptoms an autistic person has\u2026 or at least, that\u2019s the idea.<\/p>\n\n\n\n

In\nmy experience, however, higher and lower-functioning doesn\u2019t refer to actual\nsymptoms: it refers to perceived\nsymptoms<\/strong>.<\/p>\n\n\n\n

A\nsaddening amount of people, including family members of people with autism or\nmental health professionals used to working with autistic people, don\u2019t seem to\nrealize how different the external behavior and internal world of an autistic person\ncan be. They fall prey to the misconception that what they see is what they get,\nwhich is often not true for a number of reasons.<\/p>\n\n\n\n

The\nfact of the matter is, people with autism are often victims of ableism. And\nwhen it comes to the labels of high versus low-functioning, that ableism can fall\ninto two general categories:<\/p>\n\n\n\n

People\nwho are classified as low-functioning have their strengths underestimated and\ndevalued; those who are classified as high-functioning have their weaknesses\nminimized, their required areas of support downplayed.<\/p>\n\n\n\n

And\nsometimes, the two overlap.<\/p>\n\n\n\n

I\ncertainly can\u2019t speak for all people with autism, it\u2019s true \u2013 these opinions are\nmostly formed from my own experiences. However, they\u2019re opinions I hold\nstrongly, and I\u2019ve seen echoes of these thoughts elsewhere, from similar\nindividuals.<\/p>\n\n\n\n

And\nwhile I may now be classified as high-functioning, I doubt my child self would\nhave been classified the same way.<\/p>\n\n\n\n

Childhood, Bullying, and\nMistreatment<\/strong><\/p>\n\n\n\n

I\nthink there\u2019s this common perception or stereotype of what bullying looks like,\nincluding for people with disabilities. A group of jerks shoving a kid into a\nlocker, vandalizing their things and calling them names certainly comes to\nmind.<\/p>\n\n\n\n

That\ncan certainly happen \u2013 I don\u2019t mean to say that it doesn\u2019t. But that wasn\u2019t my\nexperience.<\/p>\n\n\n\n

I\nwas very young when my autistic symptoms manifested. I had a lot of sensory\nissues \u2013 I was easily overwhelmed by light, sound, and certain kinds of\nmovement. I would hide under the piano and in whatever dark, quiet corners I\ncould find. <\/p>\n\n\n\n

I\nalso had trouble communicating \u2013 I didn\u2019t understand sentence structure or\nprepositions (up, above, around, under,\nbeside<\/strong>). This made it very difficult both for me to communicate what was\nhappening to me and for me to understand what other people would say.<\/p>\n\n\n\n

Eventually,\nto make a very, very<\/em> long story short,\nI received occupational therapy, my sensory issues were mostly resolved, and my\nlanguage skills caught up\u2026<\/p>\n\n\n\n

But\nmy social skills still needed support.<\/p>\n\n\n\n

And\nI never received that support, because the professionals and my parents didn\u2019t\nknow I needed it.<\/p>\n\n\n\n

The\nresult was that, throughout my childhood, I would get treated a certain way by\nmy teachers and peers.<\/p>\n\n\n\n

The\nreason that I brought up the stereotype of bullying is that the circumstances\nare as follows: the bullies know that\nthe kid is autistic, or has a similar condition<\/strong>.<\/p>\n\n\n\n

But\nin my case? <\/p>\n\n\n\n

I\nwas treated the way I was because people didn\u2019t<\/strong>\nknow I had autism... including myself.<\/p>\n\n\n\n

My\npeers, including people I thought of as friends, would get annoyed at my social\nblunders or think I was a jerk because of a thoughtless comment on my part. Classmates\nI\u2019d known for years suddenly developed a resentment of me and became irritated\nat me for my spaciness.<\/p>\n\n\n\n

When\nI was six and in the girl scouts, I went to a day camp with my troop. On the\ndrive back, one of my troop members calmly and deliberately told me in a low\nvoice what a terrible person I was. I was reduced to tears.<\/p>\n\n\n\n

I\ndon\u2019t know what I did.<\/p>\n\n\n\n

It\nwould have been one thing if it were just my peers \u2013 many people can have bad\nexperiences with their classmates.<\/p>\n\n\n\n

However,\nthe misconceptions of my classmates were further compounded by how I was\ntreated by some of my teachers.<\/p>\n\n\n\n

It\nwasn\u2019t all of them, to be sure. But it didn\u2019t need to be. At the minimum, all\nit takes is one particularly bad teacher to scar a child for life. In my own\ncase, however, it was a bunch of small incidents that compounded over time.<\/p>\n\n\n\n

I\nwas routinely mischaracterized. Teachers I had grown fond of became irritated\nat me when I said the wrong thing. Mistakes were seen as purposeful malice,\ninattentiveness became laziness and willful disobedience.<\/p>\n\n\n\n

My\nfourth-grade teacher was a woman who was used to working with middle schoolers.\nShe was generally a sweet woman, but one day at the end of class she started\ncriticizing us \u2013 scolding us.<\/p>\n\n\n\n

\u201cAnd\nyou, Carita,\u201d she said, exasperated, \u201cYou\u2019re so spacy! You never pay any\nattention!\u201d<\/p>\n\n\n\n

I\nstood there as she scolded me, listening and crying.<\/p>\n\n\n\n

Later,\nour class learned that she had left for mental health reasons. She was to be\nreplaced by a teacher who\u2019d taught most of us for third grade. I was pleased to\nhear it was someone I already knew.<\/p>\n\n\n\n

However,\na couple of my classmates (who would later go on to resent me) turned to me\nwith looks of concern on their faces. \u201cCarita,\u201d one of them said, \u201cAre you\ngonna be okay with our third grade teacher returning? She told you to shut up,\nonce.\u201d<\/p>\n\n\n\n

I\nhad no memory of the incident. But it didn\u2019t seem unlikely.<\/p>\n\n\n\n

As\nI\u2019ve previously mentioned, these people didn\u2019t know about my condition \u2013 and in\nsome cases, they might not have cared. These people assumed that I was\nneurotypical \u2013 \u201cnormal\u201d, because through my coping mechanisms and my learning,\nI managed to pass as such. <\/p>\n\n\n\n

When\nI didn\u2019t behave normally, it wasn\u2019t a sign of a disability or a blunder \u2013 it\nwas a character problem, and I was to be punished for it.<\/p>\n\n\n\n

A\nlot of people assume that higher-functioning autists have it easier than\nlower-functioning. That, because they seem more normal, they don\u2019t have as many\nproblems.<\/p>\n\n\n\n

For\nme, that couldn\u2019t be further from the truth.<\/p>\n\n\n\n

A\nbook from one of my favorite authors features a scene in which the first\nofficial female squire is training to use a lance. When she picks it up, she\nnotices how incredibly heavy it is. She tries to use it, but she keeps missing\nthe target.<\/p>\n\n\n\n

Her\nteacher disparages her. The other students jeer at her and make fun of her weak\narms. After the training, she asks herself what went wrong, if she really is\nweak.<\/p>\n\n\n\n

It\u2019s\nonly when she examines her equipment that she realizes the lance has had\nweights added to it.<\/p>\n\n\n\n

The\nrecognition of a disadvantage is just as significant as the ability to succeed in\nspite of it.<\/p>\n\n\n\n

A Slip of Paper, A\nDiagnosis<\/strong><\/p>\n\n\n\n

Middle\nschool and high school weren\u2019t as bad as elementary \u2013 at least, not in the ways\nI\u2019ve described. Past experiences caused me to isolate myself \u2013 to reach out and\nmake connections less. However, this wasn\u2019t any indication of my language\nabilities; I had learned a lot. Unless they knew what to look for, most people\nwouldn\u2019t have guessed that I was autistic.<\/p>\n\n\n\n

I\ndiscovered I was diagnosed with autism at the end of my first college semester,\nwhen I moved out of my dorm and back into my house. To get a refund for\nhousing, we asked for a note from my psychiatrist. On that note, he listed\nseveral diagnoses of various conditions, many of which I was aware of.<\/p>\n\n\n\n

What\nI wasn\u2019t aware of was that I had been diagnosed with Asperger\u2019s.<\/p>\n\n\n\n

My\nreaction to this development is a long story that I\u2019ll have to write in another\npost. This one isn\u2019t about my own reactions to my autism \u2013 this is about the\nreaction of other people.<\/p>\n\n\n\n

And\nit was when I communicated that diagnosis to other people that something\ndifferent would happen.<\/p>\n\n\n\n

First\nof all, a lot of positive things happened \u2013 let\u2019s get that out of the way.\nNeeds that previously went unaddressed were accommodated. <\/p>\n\n\n\n

But\nthere was also a change in the way I was treated: in the rare instances when I\nchose to divulge my diagnosis, or someone was already aware of it, there was a\ngreater chance that they would underestimate my abilities and possibly even\ntalk down to me.<\/p>\n\n\n\n

For\nexample, there was one time that I chose to seek help in regards to dropping a\nclass. While it was fairly early in the semester, I felt a tremendous surge of\nguilt. I felt like I was being lazy or entitled \u2013 ideas I\u2019d sustained from\ngrowing up undiagnosed. <\/p>\n\n\n\n

As\na result, even though I knew the counselor in question and had worked with her\nbefore, I accepted my mother\u2019s proposal to have her come with me as an emotional\nsupport.<\/p>\n\n\n\n

The\nprocess itself was painless \u2013 I signed a waiver, I dropped the class, and\neverything was fine.<\/p>\n\n\n\n

The\nreal problem came about afterward, when the counselor urged me to take a class\nthat would prepare me for getting a job, writing a resume, and similar things.\nNot in itself an issue, but my unique circumstances make it difficult for me to\ntake such a class, even one specifically designed for people with disabilities\nlike me.<\/p>\n\n\n\n

My\nmother and I tried to explain this, including some of our own ideas regarding\nputting together a more individual plan.<\/p>\n\n\n\n

The\ncounselor didn\u2019t seem convinced \u2013 she insisted that I needed the knowledge, and\nthat the class would be the best opportunity for me.<\/p>\n\n\n\n

\u201cAfter\nall,\u201d she retorted, \u201cyou can\u2019t take your mother to a job interview.\u201d<\/p>\n\n\n\n

It\nis difficult to articulate what a slap across the face that was.<\/p>\n\n\n\n

And\nperhaps, for people who don\u2019t have autism or a similar disability, it won\u2019t\nseem as obvious why those words were so hurtful. After all, she was right; I can\u2019t<\/em> take my mother to a job interview.<\/p>\n\n\n\n

But\nkeep in mind the context: I brought my mother because I was afraid. I was\nembarrassed and ashamed that I had to drop the class \u2013 my mother was there as a\nsupport, and our reason for seeing the counselor was to seek help<\/em>. I already felt like I was being\ndishonorable, somehow.<\/p>\n\n\n\n

And\nhere was the counselor, who was simultaneously burying the knife and making the\ntacit assumption that I would ever even think<\/em>\nof bringing my mother to a job interview.<\/p>\n\n\n\n

I\u2019m\nsure that she thought she was helping. It\u2019s very possible that she wasn\u2019t\nintending to make me feel guilty about having my mother there. But even\ndisregarding that, the fact that she assumed what I needed (while ignoring our\nown solutions and needs) and then saying those words \u2013 it wasn\u2019t just\nunhelpful, it was deeply painful.<\/p>\n\n\n\n

In\nother words, she assumed what my weaknesses were, downplayed my own strengths\nthat I might use to combat such weaknesses, and attempted to push me into\nsomething I didn\u2019t want to do.<\/p>\n\n\n\n

This\nis what low-functioning autists \u2013 and high-functioning autists who share their\ndiagnoses \u2013 are likelier to face, in my experience. For low-functioning\nautists, I\u2019m sure this situation is just a microcosm.<\/p>\n\n\n\n

However,\nthere\u2019s another example of insidious, if well-intentioned, ableism that I\u2019d\nlike to discuss. A situation related to the first one.<\/p>\n\n\n\n

From\nhigh school until recently, I had a therapist who helped me through many\nissues. She was a warm, thoughtful person that gave me insight and perspective\n\u2013 the story I\u2019m about to tell is no indication of her overall skill as a\ntherapist.<\/p>\n\n\n\n

However,\nshe made mistakes with me that eventually made it difficult to continue seeing\nher.<\/p>\n\n\n\n

Therapists\nare meant to provide their clients with healing and understanding \u2013 that means\nthey don\u2019t always tell you what you want to hear. As beneficial as therapy is,\nit can also be uncomfortable and painful. <\/p>\n\n\n\n

But\nwhen I told her about the previous situation, her first response was, to\nparaphrase, \u201cWell, maybe\u2026\u201d<\/p>\n\n\n\n

Maybe the counselor was just trying to\nhelp.<\/em><\/p>\n\n\n\n

Maybe she was just concerned about\nyour future opportunities.<\/em><\/p>\n\n\n\n

Maybe the way she meant it was\u2026<\/em><\/p>\n\n\n\n

I\ndon\u2019t remember all of her arguments.<\/p>\n\n\n\n

But\nI remember how sour it made me feel.<\/p>\n\n\n\n

This\nis another facet of ableism \u2013 the doubting of autistic people\u2019s experiences and\nshared accounts. It\u2019s difficult to point out as such, because autistic symptoms\ncan include problems reading body language, facial expressions, and the like \u2013\na lot of times, it feels justified.<\/p>\n\n\n\n

But\nthis line of thinking doesn\u2019t have to be taken very far to cause real damage.<\/p>\n\n\n\n

I\ntook a summer pottery class once. The teacher wasn\u2019t a native speaker,\noriginally from China, but she was often polite, kind, helpful, and patient.<\/p>\n\n\n\n

Then\nwe got to the pottery wheel section, and where I was roughly on par with the\nrest of the class, I immediately fell behind.<\/p>\n\n\n\n

My\nteacher suddenly wasn\u2019t as patient anymore. When she passed by my station, her\nsmile would drop. She would make corrections \u2013 tell me that the pot was too\nthick, or that I was overworking the clay \u2013 and I wouldn\u2019t know whether she\nwanted me to work faster or make sure it looked nicer before I took it off the\nwheel. <\/p>\n\n\n\n

On\nthe last day of class, when we were presenting our pottery, I described my\npieces. Then the teacher, who had only commented on one or two of the other\nstudents, said the following.<\/p>\n\n\n\n

\u201cMs.\nGould\u2026 works very hard. She works so hard that only one out of ten pots makes\nit off the wheel!\u201d<\/p>\n\n\n\n

The\nclass chuckled.<\/p>\n\n\n\n

She\nsaid more after that, which I can\u2019t remember. More than she said for any other\nstudent\u2026 but not in a good way.<\/p>\n\n\n\n

I\ncried when I got home.<\/p>\n\n\n\n

When\nI talked about the incident to my therapist, I tried to describe it as\nneutrally as possible. She asked me how it made me feel, and I told her that it\nmade me feel terrible.<\/p>\n\n\n\n

Then\ncame the maybes.<\/p>\n\n\n\n

Chinese is a very blunt language \u2013\nmuch more blunt than English.<\/em><\/p>\n\n\n\n

It\u2019s possible she really did mean it\nas a compliment.<\/em><\/p>\n\n\n\n

Maybe,\nmaybe, maybe.<\/p>\n\n\n\n

Again,\nit\u2019s hard to argue against. Maybe I did misinterpret something.<\/p>\n\n\n\n

But\nhere\u2019s the thing: I don\u2019t need anyone to tell me that.<\/p>\n\n\n\n

I\nhave lived my whole life with my head full of maybes<\/em>.<\/p>\n\n\n\n

Even\nbefore I knew that I had autism, I noticed enough to see that I was missing\nthings \u2013 making mistakes where others didn\u2019t. Both as a kid and as an adult, I\u2019ve\nconstantly reexamined situations where I embarrassed myself, asking questions\nlike where did I go wrong<\/em> and what mistake did I make<\/em>? I examine my\nmemories from countless angles \u2013 many of them unfavorable when it comes to my\npart.<\/p>\n\n\n\n

I\nhave various disorders, including anxiety and depression, because I went too\nfar with the maybes<\/em>. I internalize my\nmistakes.<\/p>\n\n\n\n

Even\nnow, when I talk about stories like this, I\u2019ll sometimes downplay the negative\nparts or how much pain something caused me because I\u2019m afraid of being biased \u2013\nI think that contributes to how much other people minimize or misinterpret what\nI went through.<\/p>\n\n\n\n

I\ndon\u2019t think it\u2019s unfair to say that I\u2019m a very self-reflective person.<\/p>\n\n\n\n

So\nwhen I\u2019ve examined an issue and the way I present it is as a mistake that\nsomeone else made\u2026 it\u2019s something I\u2019m pretty sure about.<\/p>\n\n\n\n

Perhaps\nyou\u2019re thinking that, while I might be a self-aware or thoughtful person, the\nsame might not be true of someone else.<\/p>\n\n\n\n

To\nwhich I say, yes, that is possible\u2026 maybe<\/em>.<\/p>\n\n\n\n

But\nI\u2019d argue that this is something that should be adjusted according to the individual,\nnot something that should be generalized.<\/p>\n\n\n\n

Because\nthe consequences of these maybes<\/em> can\nresult in a form of unintentional gaslighting.<\/p>\n\n\n\n

When\nI told my parents about the ways my teachers and classmates acted towards me, they\nresponded that those teachers had acted inappropriately.<\/p>\n\n\n\n

They\nbelieved me.<\/p>\n\n\n\n

What\nif they hadn\u2019t?<\/p>\n\n\n\n

Maybe I just imagined what happened.<\/em><\/p>\n\n\n\n

Maybe I misread their tone.<\/em><\/p>\n\n\n\n

Maybe I did something to provoke them.<\/em><\/p>\n\n\n\n

Maybe I deserved it.<\/em><\/p>\n\n\n\n

Part\nof the reason I\u2019ve gone into such depths with the details in my anecdotes is\nthat I\u2019m terrified that people who read this won\u2019t believe me \u2013 that they\u2019ll\nassume I was in the wrong, and that I\u2019m leaving things out.<\/p>\n\n\n\n

Where\nthere\u2019s a lack of accountability, there\u2019s room for exploitation and abuse.\nAlways taking the side of the authority over a person with autism puts us in\ndanger \u2013 makes it easier to hurt us and get away with it. That hurt can be\naccidental or intentional, but it causes damage either way.<\/p>\n\n\n\n

The\nmeans to fix this problem are many and complicated. But one method isn\u2019t very\ncomplicated.<\/p>\n\n\n\n

Give\nautistic people the benefit of the doubt.<\/p>\n\n\n\n

Overestimate,\nUnderestimate \u2013 A Matter of Convenience<\/strong><\/p>\n\n\n\n

In\nthe introduction, I mentioned two types of ableism \u2013 underestimating one\u2019s\nweaknesses, and underestimating one\u2019s strengths. I associated these with the\nlabels of high-functioning and low-functioning, respectively - though I drew\nfrom my own experiences for examples, and I am technically classified as\n\u201chigh-functioning\u201d.<\/p>\n\n\n\n

But\nthese kinds of ableism aren\u2019t completely separate categories. They can and do\noverlap \u2013 especially if one or the other is more convenient for the person\nbehaving upon them.<\/p>\n\n\n\n

One\ntime, I was employed at a place of work where I helped archive files and copy\npapers. I was (and still am) close to the owner and my boss, and she\u2019d been\nwilling to accommodate my needs. My desk was located in a nice corner, with a\nshoji screen in front of it to both prevent distractions and help me feel\nsafer.<\/p>\n\n\n\n

When\nsomeone new was hired to help, she gave her my desk (which I was sad about, but\nwilling to adapt to) and gave me a separate one closer to the middle of the\nroom. We also moved the shoji screen in front of it to begin with.<\/p>\n\n\n\n

One\nday, however, I came in to see that the shoji screen was gone. I asked my boss\nwhere it was.<\/p>\n\n\n\n

To\nparaphrase, she responded, somewhat distractedly, \u201cOh, I don\u2019t think you need\nit anymore. I think you\u2019ve stayed long enough here, and gotten comfortable\nenough, that you don\u2019t really need it anymore,\u201d and walked away.<\/p>\n\n\n\n

O\u2026kay?<\/p>\n\n\n\n

To\nbe clear, I\u2019m still deeply fond of the person in question. But having someone\nassume that they know my needs to the extent that she did, while a little\namusing, was mostly just frustrating.<\/p>\n\n\n\n

In\nthat case, she was mostly underestimating my own needs. But I also strongly\nremember a clear instance in which both my needs and my strengths were\nunderestimated.<\/p>\n\n\n\n

The\nsummer I got hired as an assistant\nat a summer camp was a powerful experience for me, for multiple reasons. My\nrole as an assistant was accompanied by 5-6 other people with autism who were\ntoo old to attend camp itself as campers. Being around other autistic\npeople filled a hole in my heart that I hadn\u2019t known was there. It affirmed my\nidentity as an autist, in a way.<\/p>\n\n\n\n

But\nthere were some unpleasant experiences, as well.<\/p>\n\n\n\n

In\nthe early days of this job, there was a major change in leadership due to unexpected\nevents. The leadership staff and assignment of duties became complicated, and\nas a result there was chaos.<\/p>\n\n\n\n

On\nthe second day of camp, I had discussed with the previous leader of the camp\nassistants the possibility of me having more breaks. Past events had led me to\nfeel unfit for my role, and I was considering leaving \u2013 I was told that the\ncamp would gladly accommodate my need for more breaks, if it meant I stayed. <\/p>\n\n\n\n

With\nthe change in leadership, things were more confusing. Eventually, I was\napproached by a member of the leadership staff (henceforth referred to as Staff\nMember 1), who asked me when in my schedule I wanted more breaks. I replied\nthat I didn\u2019t exactly know, as I wasn\u2019t sure when I\u2019d really need them. I mainly asked for them when I was\nfeeling overwhelmed by noise, sensation, and other factors.<\/p>\n\n\n\n

She\nresponded that I couldn\u2019t just take a break whenever I wanted to, and that she\nwould meet me at a certain place and time to discuss this further. She then\nleft.<\/p>\n\n\n\n

Another staff member (now referred to as Staff Member 2) then approached me,\nand I told her what Staff Member 1 said. She replied that Staff Member 1 was\nright \u2013 that because of how things had changed, it was more important than ever\nto keep track of everyone, but that she completely sympathized. She pointed out\nthat I seemed to have lower energy in the afternoons, which could be a good\ntime for a break.<\/p>\n\n\n\n

I\nwas irked at the response of Staff Member 1 \u2013 namely, the way it was phrased\n(more on that later) \u2013 and I was a little disappointed that the breaks had to\nbe set in stone, but so far everything seemed reasonable enough.<\/p>\n\n\n\n

I\nwent to the appointed place at the appointed time, and Staff Member 1 wasn\u2019t\nthere. Someone came up to me and informed me that instead of talking to just\nme, she would be talking to all of the camp assistants a little later.<\/p>\n\n\n\n

Sure\nenough, she approached us camp assistants, and she spoke to all of us. Here\u2019s\nwhat she said.<\/p>\n\n\n\n

\u201cSome\nof you have requested breaks. The thing about that is, this is a job. And\nyou\u2019re getting paid.\u201d<\/p>\n\n\n\n

\u201cI\ndidn\u2019t know we were getting paid,\u201d one of our group said. (It hadn\u2019t been confirmed\nby that point.)<\/p>\n\n\n\n

Staff\nMember 1 confirmed that we were, and continued. \u201cSo basically, this is a job,\nright? Which means you can\u2019t always have a break whenever you want to.\u201d<\/p>\n\n\n\n

I\ndon\u2019t remember enough of what she said immediately after that to comfortably\nparaphrase. But she said she would talk to us individually about when we needed\nbreaks.<\/p>\n\n\n\n

When\nshe came to talk to me, I remembered what Staff Member 2 had said and told her\nthat I wanted a break in the afternoon.<\/p>\n\n\n\n

\u201cYes!\nThank<\/em> you! That\u2019s something I can\nwork with,\u201d she replied.<\/p>\n\n\n\n

Hopefully,\nit\u2019s clear why all of this was so irritating. But in case it isn\u2019t, let me\nbreak it down for you.<\/p>\n\n\n\n

Point\n1: Her phrasing. The way she made it sound was as if we were children who\ndidn\u2019t understand our own responsibilities. Like toddlers who wanted playtime.\nNo, she didn\u2019t actually use a baby voice, but her choice of words was\ndefinitely condescending.<\/p>\n\n\n\n

Some\nof you might argue that she was trying to simplify the wording for members who\nhave problems processing words. To which I respond: A, to my knowledge, I was\nthe only<\/em> one who requested breaks,\nand B, there are ways that you can phrase things which don\u2019t imply laziness or\na lack of understanding of what a \u201cjob\u201d is.<\/p>\n\n\n\n

Point\n2: Our work hours. We worked ten hours a day for an entire week, including\nbreaks. (And this was after <\/em>more\nbreaks were added.) Some of it was physical labor \u2013 filling and distributing\nwater jugs, delivering supplies. Other times, we were to assess the cleanliness\nof people\u2019s cabins. It was really easy to get dehydrated and tired.<\/p>\n\n\n\n

For\nten hours a day for an entire week we received about 130 dollars. If you do the\nmath, that\u2019s 18 dollars a day, or $1.85 an hour. Below minimum wage. If this\nwere a regular job, the workers would probably be striking.<\/p>\n\n\n\n

I\u2019ll\nbe frank \u2013 I wouldn\u2019t have felt nearly as insulted if she\u2019d just said \u201cI\u2019m\nsorry, we have to schedule the breaks, we need to keep track of everyone.\u201d I\nwould\u2019ve felt annoyed, but I would have understood.<\/p>\n\n\n\n

Instead,\nshe made it sound like we were being selfish or immature for wanting certain\nneeds accommodated.<\/p>\n\n\n\n

This\nis an example of multiple forms of ableism combining. She treated the request\nfor breaks as irresponsible (underestimating our needs) while simultaneously\ntalking down to us (underestimating our strengths).<\/p>\n\n\n\n

And\nthe truth of it was, it was just a matter of convenience. It had little to do\nwith a lack of responsibility on our part and more to do with what was\nconvenient at the time.<\/p>\n\n\n\n

My\nprevious employer, the one who took down the shoji screen, didn\u2019t take it away\nbecause I was \u201cmore comfortable\u201d \u2013 she probably took it away because it\ninterfered with foot traffic. My supposed level of comfort was just how she\njustified it to herself.<\/p>\n\n\n\n

Conclusion<\/strong><\/p>\n\n\n\n

I\nfeel like I\u2019ve gotten carried away with sharing these negative stories. I\u2019m\nhoping that bringing them to light will help you see the harm of certain\nbehaviors or actions. But I don\u2019t just want to be negative about this.<\/p>\n\n\n\n

So\nfar, I\u2019ve argued about how the labels of low-functioning and high-functioning\ncarry certain ideas that can be harmful \u2013 how high-functioning people are\noverlooked with their support needs, how low-functioning people will have their\nstrengths underestimated and their stories doubted.<\/p>\n\n\n\n

But\nthere\u2019s one last argument I have to make about the labels \u201chigh-functioning\u201d\nand \u201clow-functioning\u201d which is, well\u2026 it\u2019s not really that accurate.<\/p>\n\n\n\n

I\nthink about the group of people\nthat I worked with at the summer camp. There were roughly 6-7 of us. Half\nof us were what I would personally classify as low-functioning. This particular\nsubgroup didn\u2019t make a lot of facial expressions and had a tendency to speak in smaller phrases and\nwith bluntness\u2026 more than the rest of us, anyway. One member was practically\nnonverbal \u2013 he repeated statements he memorized to convey meaning (though I\nheard that he was really musically gifted).<\/p>\n\n\n\n

Another\nsubgroup, which I was a part of, was what I\u2019d classify as high-functioning. We had more language skills to\ncommunicate.<\/p>\n\n\n\n

But\nout of all of these people\u2026 I was the one who seemed to get the most\noverwhelmed by sensory overload.<\/p>\n\n\n\n

It\u2019s\nwhy I asked for breaks.<\/p>\n\n\n\n

I\nthink high and low-functioning have their uses as terms\u2026 to a point. I think\nthey can be a little useful when it comes to describing how autistic people appear<\/em> to function. <\/p>\n\n\n\n

But\nall is not what it appears to be.<\/p>\n\n\n\n

To\nconclude, I\u2019d like to reiterate: give autistic people the benefit of the doubt.\nListen to us. Listen to us if we tell you that we need help. Listen to us if we\nsay that somebody hurt us. If you have reason to believe we might be wrong\nabout something, fine \u2013 adjust your expectations for each individual. Trust in\nus.<\/p>\n\n\n\n

Believe\nin us.<\/p>\n\n\n\n

Thank\nyou for reading.<\/p>\n","protected":false},"excerpt":{"rendered":"

Written by Carita Gould Hi! My name is Carita Gould. I have a couple of things to tell you, but let me give you a picture of who I am first. I\u2019m a young woman with red hair and blue eyes. I\u2019m short – four feet, eleven and three quarter inches, to be exact; my […]<\/p>\n","protected":false},"author":93,"featured_media":188,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[27,22],"tags":[47,92,34,95,94],"class_list":{"0":"post-596","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-adult-with-autism","8":"category-family-member","9":"tag-asd","10":"tag-autism","11":"tag-blog-post","12":"tag-community","13":"tag-personal-experience","14":"czr-hentry"},"publishpress_future_action":{"enabled":false,"date":"2027-05-02 06:00:00","action":"change-status","newStatus":"private","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/posts\/596","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/users\/93"}],"replies":[{"embeddable":true,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/comments?post=596"}],"version-history":[{"count":2,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/posts\/596\/revisions"}],"predecessor-version":[{"id":598,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/posts\/596\/revisions\/598"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/media\/188"}],"wp:attachment":[{"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/media?parent=596"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/categories?post=596"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cdd.health.unm.edu\/autismportal\/wp-json\/wp\/v2\/tags?post=596"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}