Let’s Start at the Beginning

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’m a young woman with red hair and blue eyes. I’m short - four feet, eleven and three quarter inches, to be exact; my own height taunts me. I’m quiet in person, especially around those I don’t know well, and I’m often lost in thought. I spend a lot of time inside – playing video games, surfing the web, and (no points for guessing) writing. I’m working on getting a Bachelor degree at UNM – I want to be a video game designer someday.

I’m also what most people would classify as high-functioning autistic.

Would you have guessed I was autistic upon meeting me? Maybe, maybe not. As an “autist”, the way my symptoms manifest can be subtle. You might have been able to guess by reading the description above, and if you had, you would probably have guessed I was high-functioning.

But there’s a problem with that.

When discussing and describing autism, the community often uses the terms “high-functioning” and “low-functioning”. These are loose terms, not strictly defined by diagnoses, that are often used to refer to the severity of the symptoms an autistic person has… or at least, that’s the idea.

In my experience, however, higher and lower-functioning doesn’t refer to actual symptoms: it refers to perceived symptoms.

A saddening amount of people, including family members of people with autism or mental health professionals used to working with autistic people, don’t seem to realize how different the external behavior and internal world of an autistic person can be. They fall prey to the misconception that what they see is what they get, which is often not true for a number of reasons.

The fact of the matter is, people with autism are often victims of ableism. And when it comes to the labels of high versus low-functioning, that ableism can fall into two general categories:

People who are classified as low-functioning have their strengths underestimated and devalued; those who are classified as high-functioning have their weaknesses minimized, their required areas of support downplayed.

And sometimes, the two overlap.

I certainly can’t speak for all people with autism, it’s true – these opinions are mostly formed from my own experiences. However, they’re opinions I hold strongly, and I’ve seen echoes of these thoughts elsewhere, from similar individuals.

And while I may now be classified as high-functioning, I doubt my child self would have been classified the same way.

Childhood, Bullying, and Mistreatment

I think there’s this common perception or stereotype of what bullying looks like, including for people with disabilities. A group of jerks shoving a kid into a locker, vandalizing their things and calling them names certainly comes to mind.

That can certainly happen – I don’t mean to say that it doesn’t. But that wasn’t my experience.

I was very young when my autistic symptoms manifested. I had a lot of sensory issues – I was easily overwhelmed by light, sound, and certain kinds of movement. I would hide under the piano and in whatever dark, quiet corners I could find.

I also had trouble communicating – I didn’t understand sentence structure or prepositions (up, above, around, under, beside). This made it very difficult both for me to communicate what was happening to me and for me to understand what other people would say.

Eventually, to make a very, very long story short, I received occupational therapy, my sensory issues were mostly resolved, and my language skills caught up…

But my social skills still needed support.

And I never received that support, because the professionals and my parents didn’t know I needed it.

The result was that, throughout my childhood, I would get treated a certain way by my teachers and peers.

The reason that I brought up the stereotype of bullying is that the circumstances are as follows: the bullies know that the kid is autistic, or has a similar condition.

But in my case?

I was treated the way I was because people didn’t know I had autism... including myself.

My peers, including people I thought of as friends, would get annoyed at my social blunders or think I was a jerk because of a thoughtless comment on my part. Classmates I’d known for years suddenly developed a resentment of me and became irritated at me for my spaciness.

When I was six and in the girl scouts, I went to a day camp with my troop. On the drive back, one of my troop members calmly and deliberately told me in a low voice what a terrible person I was. I was reduced to tears.

I don’t know what I did.

It would have been one thing if it were just my peers – many people can have bad experiences with their classmates.

However, the misconceptions of my classmates were further compounded by how I was treated by some of my teachers.

It wasn’t all of them, to be sure. But it didn’t need to be. At the minimum, all it takes is one particularly bad teacher to scar a child for life. In my own case, however, it was a bunch of small incidents that compounded over time.

I was routinely mischaracterized. Teachers I had grown fond of became irritated at me when I said the wrong thing. Mistakes were seen as purposeful malice, inattentiveness became laziness and willful disobedience.

My fourth-grade teacher was a woman who was used to working with middle schoolers. She was generally a sweet woman, but one day at the end of class she started criticizing us – scolding us.

“And you, Carita,” she said, exasperated, “You’re so spacy! You never pay any attention!”

I stood there as she scolded me, listening and crying.

Later, our class learned that she had left for mental health reasons. She was to be replaced by a teacher who’d taught most of us for third grade. I was pleased to hear it was someone I already knew.

However, a couple of my classmates (who would later go on to resent me) turned to me with looks of concern on their faces. “Carita,” one of them said, “Are you gonna be okay with our third grade teacher returning? She told you to shut up, once.”

I had no memory of the incident. But it didn’t seem unlikely.

As I’ve previously mentioned, these people didn’t know about my condition – and in some cases, they might not have cared. These people assumed that I was neurotypical – “normal”, because through my coping mechanisms and my learning, I managed to pass as such.

When I didn’t behave normally, it wasn’t a sign of a disability or a blunder – it was a character problem, and I was to be punished for it.

A lot of people assume that higher-functioning autists have it easier than lower-functioning. That, because they seem more normal, they don’t have as many problems.

For me, that couldn’t be further from the truth.

A book from one of my favorite authors features a scene in which the first official female squire is training to use a lance. When she picks it up, she notices how incredibly heavy it is. She tries to use it, but she keeps missing the target.

Her teacher disparages her. The other students jeer at her and make fun of her weak arms. After the training, she asks herself what went wrong, if she really is weak.

It’s only when she examines her equipment that she realizes the lance has had weights added to it.

The recognition of a disadvantage is just as significant as the ability to succeed in spite of it.

A Slip of Paper, A Diagnosis

Middle school and high school weren’t as bad as elementary – at least, not in the ways I’ve described. Past experiences caused me to isolate myself – to reach out and make connections less. However, this wasn’t any indication of my language abilities; I had learned a lot. Unless they knew what to look for, most people wouldn’t have guessed that I was autistic.

I discovered I was diagnosed with autism at the end of my first college semester, when I moved out of my dorm and back into my house. To get a refund for housing, we asked for a note from my psychiatrist. On that note, he listed several diagnoses of various conditions, many of which I was aware of.

What I wasn’t aware of was that I had been diagnosed with Asperger’s.

My reaction to this development is a long story that I’ll have to write in another post. This one isn’t about my own reactions to my autism – this is about the reaction of other people.

And it was when I communicated that diagnosis to other people that something different would happen.

First of all, a lot of positive things happened – let’s get that out of the way. Needs that previously went unaddressed were accommodated.

But there was also a change in the way I was treated: in the rare instances when I chose to divulge my diagnosis, or someone was already aware of it, there was a greater chance that they would underestimate my abilities and possibly even talk down to me.

For example, there was one time that I chose to seek help in regards to dropping a class. While it was fairly early in the semester, I felt a tremendous surge of guilt. I felt like I was being lazy or entitled – ideas I’d sustained from growing up undiagnosed.

As a result, even though I knew the counselor in question and had worked with her before, I accepted my mother’s proposal to have her come with me as an emotional support.

The process itself was painless – I signed a waiver, I dropped the class, and everything was fine.

The real problem came about afterward, when the counselor urged me to take a class that would prepare me for getting a job, writing a resume, and similar things. Not in itself an issue, but my unique circumstances make it difficult for me to take such a class, even one specifically designed for people with disabilities like me.

My mother and I tried to explain this, including some of our own ideas regarding putting together a more individual plan.

The counselor didn’t seem convinced – she insisted that I needed the knowledge, and that the class would be the best opportunity for me.

“After all,” she retorted, “you can’t take your mother to a job interview.”

It is difficult to articulate what a slap across the face that was.

And perhaps, for people who don’t have autism or a similar disability, it won’t seem as obvious why those words were so hurtful. After all, she was right; I can’t take my mother to a job interview.

But keep in mind the context: I brought my mother because I was afraid. I was embarrassed and ashamed that I had to drop the class – my mother was there as a support, and our reason for seeing the counselor was to seek help. I already felt like I was being dishonorable, somehow.

And here was the counselor, who was simultaneously burying the knife and making the tacit assumption that I would ever even think of bringing my mother to a job interview.

I’m sure that she thought she was helping. It’s very possible that she wasn’t intending to make me feel guilty about having my mother there. But even disregarding that, the fact that she assumed what I needed (while ignoring our own solutions and needs) and then saying those words – it wasn’t just unhelpful, it was deeply painful.

In other words, she assumed what my weaknesses were, downplayed my own strengths that I might use to combat such weaknesses, and attempted to push me into something I didn’t want to do.

This is what low-functioning autists – and high-functioning autists who share their diagnoses – are likelier to face, in my experience. For low-functioning autists, I’m sure this situation is just a microcosm.

However, there’s another example of insidious, if well-intentioned, ableism that I’d like to discuss. A situation related to the first one.

From high school until recently, I had a therapist who helped me through many issues. She was a warm, thoughtful person that gave me insight and perspective – the story I’m about to tell is no indication of her overall skill as a therapist.

However, she made mistakes with me that eventually made it difficult to continue seeing her.

Therapists are meant to provide their clients with healing and understanding – that means they don’t always tell you what you want to hear. As beneficial as therapy is, it can also be uncomfortable and painful.

But when I told her about the previous situation, her first response was, to paraphrase, “Well, maybe…”

Maybe the counselor was just trying to help.

Maybe she was just concerned about your future opportunities.

Maybe the way she meant it was…

I don’t remember all of her arguments.

But I remember how sour it made me feel.

This is another facet of ableism – the doubting of autistic people’s experiences and shared accounts. It’s difficult to point out as such, because autistic symptoms can include problems reading body language, facial expressions, and the like – a lot of times, it feels justified.

But this line of thinking doesn’t have to be taken very far to cause real damage.

I took a summer pottery class once. The teacher wasn’t a native speaker, originally from China, but she was often polite, kind, helpful, and patient.

Then we got to the pottery wheel section, and where I was roughly on par with the rest of the class, I immediately fell behind.

My teacher suddenly wasn’t as patient anymore. When she passed by my station, her smile would drop. She would make corrections – tell me that the pot was too thick, or that I was overworking the clay – and I wouldn’t know whether she wanted me to work faster or make sure it looked nicer before I took it off the wheel.

On the last day of class, when we were presenting our pottery, I described my pieces. Then the teacher, who had only commented on one or two of the other students, said the following.

“Ms. Gould… works very hard. She works so hard that only one out of ten pots makes it off the wheel!”

The class chuckled.

She said more after that, which I can’t remember. More than she said for any other student… but not in a good way.

I cried when I got home.

When I talked about the incident to my therapist, I tried to describe it as neutrally as possible. She asked me how it made me feel, and I told her that it made me feel terrible.

Then came the maybes.

Chinese is a very blunt language – much more blunt than English.

It’s possible she really did mean it as a compliment.

Maybe, maybe, maybe.

Again, it’s hard to argue against. Maybe I did misinterpret something.

But here’s the thing: I don’t need anyone to tell me that.

I have lived my whole life with my head full of maybes.

Even before I knew that I had autism, I noticed enough to see that I was missing things – making mistakes where others didn’t. Both as a kid and as an adult, I’ve constantly reexamined situations where I embarrassed myself, asking questions like where did I go wrong and what mistake did I make? I examine my memories from countless angles – many of them unfavorable when it comes to my part.

I have various disorders, including anxiety and depression, because I went too far with the maybes. I internalize my mistakes.

Even now, when I talk about stories like this, I’ll sometimes downplay the negative parts or how much pain something caused me because I’m afraid of being biased – I think that contributes to how much other people minimize or misinterpret what I went through.

I don’t think it’s unfair to say that I’m a very self-reflective person.

So when I’ve examined an issue and the way I present it is as a mistake that someone else made… it’s something I’m pretty sure about.

Perhaps you’re thinking that, while I might be a self-aware or thoughtful person, the same might not be true of someone else.

To which I say, yes, that is possible… maybe.

But I’d argue that this is something that should be adjusted according to the individual, not something that should be generalized.

Because the consequences of these maybes can result in a form of unintentional gaslighting.

When I told my parents about the ways my teachers and classmates acted towards me, they responded that those teachers had acted inappropriately.

They believed me.

What if they hadn’t?

Maybe I just imagined what happened.

Maybe I misread their tone.

Maybe I did something to provoke them.

Maybe I deserved it.

Part of the reason I’ve gone into such depths with the details in my anecdotes is that I’m terrified that people who read this won’t believe me – that they’ll assume I was in the wrong, and that I’m leaving things out.

Where there’s a lack of accountability, there’s room for exploitation and abuse. Always taking the side of the authority over a person with autism puts us in danger – makes it easier to hurt us and get away with it. That hurt can be accidental or intentional, but it causes damage either way.

The means to fix this problem are many and complicated. But one method isn’t very complicated.

Give autistic people the benefit of the doubt.

Overestimate, Underestimate – A Matter of Convenience

In the introduction, I mentioned two types of ableism – underestimating one’s weaknesses, and underestimating one’s strengths. I associated these with the labels of high-functioning and low-functioning, respectively - though I drew from my own experiences for examples, and I am technically classified as “high-functioning”.

But these kinds of ableism aren’t completely separate categories. They can and do overlap – especially if one or the other is more convenient for the person behaving upon them.

One time, I was employed at a place of work where I helped archive files and copy papers. I was (and still am) close to the owner and my boss, and she’d been willing to accommodate my needs. My desk was located in a nice corner, with a shoji screen in front of it to both prevent distractions and help me feel safer.

When someone new was hired to help, she gave her my desk (which I was sad about, but willing to adapt to) and gave me a separate one closer to the middle of the room. We also moved the shoji screen in front of it to begin with.

One day, however, I came in to see that the shoji screen was gone. I asked my boss where it was.

To paraphrase, she responded, somewhat distractedly, “Oh, I don’t think you need it anymore. I think you’ve stayed long enough here, and gotten comfortable enough, that you don’t really need it anymore,” and walked away.

O…kay?

To be clear, I’m still deeply fond of the person in question. But having someone assume that they know my needs to the extent that she did, while a little amusing, was mostly just frustrating.

In that case, she was mostly underestimating my own needs. But I also strongly remember a clear instance in which both my needs and my strengths were underestimated.

The summer I got hired as an assistant at a summer camp was a powerful experience for me, for multiple reasons. My role as an assistant was accompanied by 5-6 other people with autism who were too old to attend camp itself as campers. Being around other autistic people filled a hole in my heart that I hadn’t known was there. It affirmed my identity as an autist, in a way.

But there were some unpleasant experiences, as well.

In the early days of this job, there was a major change in leadership due to unexpected events. The leadership staff and assignment of duties became complicated, and as a result there was chaos.

On the second day of camp, I had discussed with the previous leader of the camp assistants the possibility of me having more breaks. Past events had led me to feel unfit for my role, and I was considering leaving – I was told that the camp would gladly accommodate my need for more breaks, if it meant I stayed.

With the change in leadership, things were more confusing. Eventually, I was approached by a member of the leadership staff (henceforth referred to as Staff Member 1), who asked me when in my schedule I wanted more breaks. I replied that I didn’t exactly know, as I wasn’t sure when I’d really need them. I mainly asked for them when I was feeling overwhelmed by noise, sensation, and other factors.

She responded that I couldn’t just take a break whenever I wanted to, and that she would meet me at a certain place and time to discuss this further. She then left.

Another staff member (now referred to as Staff Member 2) then approached me, and I told her what Staff Member 1 said. She replied that Staff Member 1 was right – that because of how things had changed, it was more important than ever to keep track of everyone, but that she completely sympathized. She pointed out that I seemed to have lower energy in the afternoons, which could be a good time for a break.

I was irked at the response of Staff Member 1 – namely, the way it was phrased (more on that later) – and I was a little disappointed that the breaks had to be set in stone, but so far everything seemed reasonable enough.

I went to the appointed place at the appointed time, and Staff Member 1 wasn’t there. Someone came up to me and informed me that instead of talking to just me, she would be talking to all of the camp assistants a little later.

Sure enough, she approached us camp assistants, and she spoke to all of us. Here’s what she said.

“Some of you have requested breaks. The thing about that is, this is a job. And you’re getting paid.”

“I didn’t know we were getting paid,” one of our group said. (It hadn’t been confirmed by that point.)

Staff Member 1 confirmed that we were, and continued. “So basically, this is a job, right? Which means you can’t always have a break whenever you want to.”

I don’t remember enough of what she said immediately after that to comfortably paraphrase. But she said she would talk to us individually about when we needed breaks.

When she came to talk to me, I remembered what Staff Member 2 had said and told her that I wanted a break in the afternoon.

“Yes! Thank you! That’s something I can work with,” she replied.

Hopefully, it’s clear why all of this was so irritating. But in case it isn’t, let me break it down for you.

Point 1: Her phrasing. The way she made it sound was as if we were children who didn’t understand our own responsibilities. Like toddlers who wanted playtime. No, she didn’t actually use a baby voice, but her choice of words was definitely condescending.

Some of you might argue that she was trying to simplify the wording for members who have problems processing words. To which I respond: A, to my knowledge, I was the only one who requested breaks, and B, there are ways that you can phrase things which don’t imply laziness or a lack of understanding of what a “job” is.

Point 2: Our work hours. We worked ten hours a day for an entire week, including breaks. (And this was after more breaks were added.) Some of it was physical labor – filling and distributing water jugs, delivering supplies. Other times, we were to assess the cleanliness of people’s cabins. It was really easy to get dehydrated and tired.

For ten hours a day for an entire week we received about 130 dollars. If you do the math, that’s 18 dollars a day, or $1.85 an hour. Below minimum wage. If this were a regular job, the workers would probably be striking.

I’ll be frank – I wouldn’t have felt nearly as insulted if she’d just said “I’m sorry, we have to schedule the breaks, we need to keep track of everyone.” I would’ve felt annoyed, but I would have understood.

Instead, she made it sound like we were being selfish or immature for wanting certain needs accommodated.

This is an example of multiple forms of ableism combining. She treated the request for breaks as irresponsible (underestimating our needs) while simultaneously talking down to us (underestimating our strengths).

And the truth of it was, it was just a matter of convenience. It had little to do with a lack of responsibility on our part and more to do with what was convenient at the time.

My previous employer, the one who took down the shoji screen, didn’t take it away because I was “more comfortable” – she probably took it away because it interfered with foot traffic. My supposed level of comfort was just how she justified it to herself.

Conclusion

I feel like I’ve gotten carried away with sharing these negative stories. I’m hoping that bringing them to light will help you see the harm of certain behaviors or actions. But I don’t just want to be negative about this.

So far, I’ve argued about how the labels of low-functioning and high-functioning carry certain ideas that can be harmful – how high-functioning people are overlooked with their support needs, how low-functioning people will have their strengths underestimated and their stories doubted.

But there’s one last argument I have to make about the labels “high-functioning” and “low-functioning” which is, well… it’s not really that accurate.

I think about the group of people that I worked with at the summer camp. There were roughly 6-7 of us. Half of us were what I would personally classify as low-functioning. This particular subgroup didn’t make a lot of facial expressions and had a tendency to speak in smaller phrases and with bluntness… more than the rest of us, anyway. One member was practically nonverbal – he repeated statements he memorized to convey meaning (though I heard that he was really musically gifted).

Another subgroup, which I was a part of, was what I’d classify as high-functioning. We had more language skills to communicate.

But out of all of these people… I was the one who seemed to get the most overwhelmed by sensory overload.

It’s why I asked for breaks.

I think high and low-functioning have their uses as terms… to a point. I think they can be a little useful when it comes to describing how autistic people appear to function.

But all is not what it appears to be.

To conclude, I’d like to reiterate: give autistic people the benefit of the doubt. Listen to us. Listen to us if we tell you that we need help. Listen to us if we say that somebody hurt us. If you have reason to believe we might be wrong about something, fine – adjust your expectations for each individual. Trust in us.

Believe in us.

Thank you for reading.