Episode 2 notes and transcript
- DisabilityU Podcast
- Jul 22, 2022
- 42 min read
In this episode, Christina talks to Percy and Vincent about having autism and ADHD, misconceptions about how their disabilities work, and why they don't believe schools should have deadlines or tests.
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Some insightful quotes from this episode:
Vincent: I would have trouble when we were told to do things and I didn't understand why we were doing them. For me, I would ask, “Well, why?” And then, adults would get offended by my curiosity, evidently… there was this expectation that I would just do things without really understanding what I was doing. And that, for me, that was just never really comfortable with the way my brain worked.
Vincent:
Most of the well-studied treatments for, especially, disabilities that affect younger children are, “How do we make it look okay?”
Percy:
And then that belief also then extends to, like, I've never met a person with ADHD who doesn't feel some sort of —
Vincent:
Guilt
Percy:
Yes, guilt. We always feel as if it's our fault that we can't do things. And the expectation all throughout schooling, at least for me, was that like, “Oh, I am just doing something wrong. I can't finish my homework and it is my fault.” When in reality, it is my brain that is dysfunctional. I am doing the best that I can with the mental capacity that I have. It's just the teachers and my brain chemicals that aren't helping.
Percy: I think one of the biggest takeaways is that no person with autism and no person with ADHD, no person with any kind of neurodiversity will experience it the exact same way and trying to fit us into a binary or into a box is counterproductive. So, having the ability to decide how we want to learn is kind of vital. It's gonna benefit neurotypicals as well, but especially neurodivergent students would benefit from that and it's almost a necessity.
Transcript
Music: “Shaolin Dub” by Skinwalker
Christina Baker:
Hi, welcome to Beyond Accommodations at Disability U, a podcast where disabled Penn State students envision a world by us, for us. My name is Christina Baker. And today my guests are Percy and Vincent. So now you guys can just go and introduce yourselves.
Vincent:
Well I'm Vincent. I'm a third year student majoring in linguistics and I'm autistic.
Percy:
I'm Percy, he/him, by the way. I am also a third year student. I'm majoring in digital arts and media design and I'm autistic and have ADHD.
Christina:
So do you guys just want to describe your disability, like your history of your diagnosis? What’s happened in the time you've been in school, what accommodations, etc?
Vincent:
So I was diagnosed pretty early. I was diagnosed in first grade after I had moved from Catholic school to public school. My teacher just recommended I get tested. I got diagnosed with autism. And then I kind of just went through a bunch of different psychiatrists, a bunch of different therapists, I had an IEP up until eighth grade. Couldn't really tell you much of the accommodations up until college mostly because they were [more] meant to help the teachers than they were to help me honestly. But now I use flexibility on due dates.
Christina:
I think that we should say here for people who might not be aware: an IEP stands for individualized education plan and students who have a disability will get them. They're required by law for teachers to follow them under the Individuals with Disability and Education Act.
Percy:
So in terms of when I was diagnosed, I was not diagnosed until I was 16, after my dad was diagnosed. I am assigned female at birth, so it is more difficult for us to get diagnosed with ADHD. It’s also more difficult for us to get diagnosed with autism, which I was diagnosed with about a year after that. In terms of accommodations, I should have probably asked for them in high school. I did not. Currently, in college, I should also probably ask for some. I have not. But I do take medication for my ADHD. And now I'm finally on the correct medication, as of like a month ago. So that's been working for me. But in terms of IEPs, I do not have one.
Christina:
And what are some times when in your classes you noticed that the method of instruction or the way the class was operating seemed to be designed with you not in mind?
Percy:
Give me a second to think. I guess just like when lectures, whether they're middle school, high school, or college, they're very verbal only, they don’t have any visuals. Obviously that can be inconvenient for a neurotypical student as well. But for me specifically, for my ADHD and my autism, just the lack of stimulation provided is not great. It's a very small thing, but it really has an effect on how well I can learn.
Christina:
And can you explain at this point, I just think it's probably helpful. Because a lot of people don't know much about autism. Can you explain what you mean by “the level of stimulation isn't adequate” for you?
Percy:
Yeah, so for people with autism, autistic people, stimulation would mean like your senses. So a lot of times you hear it in the context of, we get overstimulated. Like things are too loud, something has too strong of a taste, something feels wrong. Something that's a bad texture that can be overstimulating. But in context of not enough stimulation, understimulation would also be a thing to like, especially when you, when you have comorbid ADHD and autism, it can really affect how understimulated you get. and how it's just so hard to pay attention when there’s not enough information to focus on. So it actually kind of —
Vincent:
You'll start to focus on background things.
Percy:
Yeah
Vincent:
If you don't have enough actual substantive material in the classroom to focus on, you'll start focusing on, like, the clock ticking in the background or the heater humming. And you start basically finding things to get distracted by without even realizing it.
Percy:
Yes, exactly.
Vincent:
Yes, I would say mostly for me what I noticed in elementary school, my problem was less with academics and more with, like, social and student expectations basically. So I would have trouble when we were told to do things and I didn't understand why we were doing them. For me, I just – I would ask, “Well, why?” And then, adults would get offended by my curiosity, evidently. So mostly for me, it was when I realized that there was this expectation that I would just do things without really understanding what I was doing. And that, for me, that was just never really comfortable with the way my brain worked.
Christina:
How did your teachers react to your needs?
Percy:
I can give an example. When I was in eighth grade, I had this history teacher. I didn't like him very much for a number of reasons. But the main one was, I would draw to stimulate myself during class and to have something to focus on in addition to what he was lecturing about and droning on about. Otherwise, I could not register his words, similar to what we talked about earlier. I would get in trouble with him for drawing, and for “not paying attention,” even though I was paying attention. Obviously like I wasn't diagnosed then. I couldn't ask for accommodations and I wasn't assertive enough to say anything, but it did suck to have my one outlet of stimulation, of something that was helping me pay attention, having that taken away by teachers who didn't really get it, I guess.
Christina:
Something that occurred to me about that anecdote is the lack of agency that you had, and I feel like this also pertains to what Vincent was saying earlier, about not understanding why instructions were given. This is probably more of a thing for all students rather than just autistic students. But in our current education system, there's a lot of pressure on students to do what they're told and they don't really have any agency to respond to that. The teacher might ask you to do something but it's implied that you don't have an option either way. And they just were willing to disregard your drawing, which wasn't really interrupting anything. You didn't get a chance to explain yourself.
Percy:
Yes exactly. You could also argue that teachers often teach the same way for every student. And it's not very individualized. Granted, they don't have much wiggle room in such a large class, but it does suck that it has to be that way.
Christina:
Yeah, and that they're not really asking you what the best way you would learn is.
Vincent:
I would say definitely the lack of agency is a big thing that I've noticed in the past. I haven't actually had any negative reactions from professors or teachers, once I kind of got to high school and I was able to say, “Hey, here's what I need from you. What do you need from me?” And we were able to just work it out together. That, it's always worked out fine. It was in the beginning, where they were like, “Okay, we have this kid with autism. Here's what we need to do to allegedly help him. Why is he not accepting our help?” And that became the real struggle, was they, ironically, took a disability that's characterized with highly individualized symptoms. And then, instead of saying, “Oh, he just doesn't fit into this regular student box. Like let's fix” — they just tried to put me in a different box. And they just made the problem from square one again. So that was definitely my experience.
Christina:
Yeah. And earlier we were talking about how people don't understand that autism is a sensory processing disorder and that you have different reactions to sensory input than average people are that’s what a lot of the symptoms of the disability stem from. I am assuming that your teachers didn't know that either. Can you talk about whether you've ever noticed that in class beyond what you've already mentioned, and how you think it would be different if your teachers had understood what autism was?
Percy:
I can actually talk about that. Even though, you know, I wasn't diagnosed. I still experienced – I wouldn't call it discrimination per se, but it was a negative experience with one of my teachers in high school. She's a very nice lady, but she didn't like subtitles on her movies. So we were watching a movie during class and multiple students asked, “Hey, would you mind turning the subtitles on? So we can better understand the movie?” And she said, “Well, I don't really want the subtitles on so I'm not gonna turn them on. I will turn the volume up.” As if that would help us register the words better. So then multiple of us had sat there the entire class with the volume blasting in our ears, and still not able to understand the words. That was kind of a time when a teacher didn't really understand my needs with my sensory issues.
Vincent:
I would say I had similar experiences, but I feel like what was really interesting is I don't actually know for a fact if my teachers in high school actually knew that I had autism. Because the paper trail for my disability ended in eighth grade for me. So I genuinely don't know if they even knew I was autistic.
Christina:
I know in college they're not supposed to know,
Vincent:
In college they just know that you have an accommodation. But up through 12th grade, you don't – you aren't afforded that expectation of privacy to your teachers. And you're also never afforded the opportunity to explain to your teachers, from your point of view, what your issues are. They are always pretty much approaching you with the issue.
Christina:
I know that something that I read a lot from like disability activists, whenever I'm reading about stuff, is a lot of stuff with disabilities, especially stuff like ADHD and autism, is created from the perspective of someone who's not the person with a disability. ADHD is a classic example, that ADHD is called Attention Deficit Hyperactivity Disorder. And that's because those are the symptoms that are most visible to a parent or a teacher. But if you ask someone with ADHD what their primary symptoms are, they probably wouldn't be like, “Well, I'm pretty hyperactive” or like, “I have trouble focusing.” They will probably mention executive dysfunction, which is by far the most common symptom in ADHD and probably the one that impacts people's lives the most.
Christina:
Executive dysfunction refers to difficulty with stuff like memory, attention, flexible thinking and managing your time and your responsibilities. This is often present in people with most mental illnesses and a lot of different disabilities, and it is the main symptom of ADHD.
Christina
I mean, that's also how diagnoses happen. They don't ask kids whether they feel like they have trouble doing their homework, whether they're experiencing executive dysfunction. Kids get diagnosed because they are disrupting class or their teachers are noticing that they're not paying attention enough in class. And if your teachers don't feel that you do have ADHD that can actually set back the diagnosis process for students.
Vincent:
That, unfortunately, extends to treatment as well as diagnosis. Because most of the well-studied treatments for especially disabilities that affect younger children are, “How do we make it look okay?”
Christina:
And on that note, of diagnosis and treatment being geared toward what symptoms are noticeable to outsiders other than the person with a disability. That is also why autism and ADHD are extremely under-diagnosed in girls and women and people assigned female at birth, who were, you know, female presenting when they were girls. Because, first of all, the way that children are socialized, it's much more encouraged for girls to be not disruptive. So, first of all, girls aren't going to be as rowdy in class and so their teachers aren’t going to recommend them for diagnosis. And because ADHD was for so long stereotyped as a disorder for boys, and this goes for autism too, teachers aren't expecting their female students to have ADHD or autism. And so even if they do notice something that might seem like an ADHD or autism symptom, many of them will just assume that it's not because they don't even know that it's possible for girls to get ADHD or autism.
Percy:
Yeah, I have absolutely experienced that as someone who was raised as a girl. I was raised and socialized as a girl up until I came out at 13. Definitely, there's a stereotype, this kind of box people want people with ADHD and autism to fit into. Where, with ADHD, they expect you to be this disruptive, rowdy young boy, who you know, gets out of his seat and fidgets the entire class. And I obviously didn't fit into that. And then with autism, they expect you to be a young boy who's quiet or awkward and loves trains, loves mechanical things. And obviously, I'm an art major now. I was never into trains.
Percy
Not that many autistic people are actually into trains. It's a gross stereotype. Like, good for you if you are, but the fact that the basis of diagnosis and teachers noticing and helping you to get treatment is based on these outdated, narrow ideas of what they think these disabilities to be. There's an end of the statement, but I don't know.
Vincent:
I've definitely been told by a doctor, like, “This is what autistic people experience,” and I've definitely looked them back in the eye and been like, “No, it's not.”
Percy:
Yeah, they only care about how it disrupts their lives. The same thing with how ADHD was named. It's named after how neurotypical people see it and how neurotypical people are bothered by it.
Christina:
The funny part is, executive dysfunction is something that bothers neurotypical people. When ADHD people have executive dysfunction. However, they just assume that it's a personal flaw on the part of people with ADHD and they're just being lazy. So that's not part of the name.
Percy:
And then that belief also then extends to, like, I've never met a person with ADHD who doesn't feel some sort of —
Vincent:
Guilt
Percy:
Yes, guilt. We always feel as if it's our fault that we can't do things. And the expectation all throughout schooling, at least for me, was that like, “Oh, I am just doing something wrong. I can't finish my homework and it is my fault.” When in reality, it is my brain that is dysfunctional. I am doing the best that I can with the mental capacity that I have. It's just the teachers and my brain chemicals that aren't helping.
Christina:
I've definitely heard people speculate. There's a serious question of how many symptoms of ADHD and autism are actually symptoms inherent to people with ADHD and autism and how many of them are trauma responses based on the trauma, the mistreatment, the guilting that people with ADHD and autism experience when they are growing up. That there's really not many autistic people who weren't in some way traumatized by either being undiagnosed or being treated incorrectly. There's not enough people who weren't traumatized in their childhood, for us to be able to differentiate what symptoms are trauma responses and what are inherent to autism.
Vincent:
I think that could be a special edition episode of this podcast. I think there's enough material to get into a whole lot of stuff.
Percy:
Yeah, I was just gonna say like… So one that really comes to mind is masking. I would consider it a symptom of both ADHD and autism. It’s sort of when you act neurotypical, you try to fit better into what they expect people to ask and that is definitely not inherent. It is in response to how society, how our community treats us as individuals. We are taught that how we're behaving is abnormal and it is not okay, so we have to cover that up. And it's not until recently, until after my diagnosis and until after I gained a better support system that I have begun unmasking and unlearning, unlearning the belief that the way I behave is not okay.
Vincent:
Once I was diagnosed, then pretty much any kind of little emotional response that I had that the adults didn't necessarily like — if I wanted some privacy or if I just wanted to, you know, be myself for a little bit. They automatically were like, “No, that's autism, we can't let that happen.” So they would, like, interrogate me to share my feelings with them for the longest time. So like I didn't actually talk to my therapist until I was 16. I just kind of sat there, because I was so residually upset with my guidance counselor in elementary school that I just didn't trust anyone. And then it took me so long to get – even today, like, I'm just now getting comfortable asking for help by explaining like, “Hey, I'm having a bad day. I just need a little more time with this,” or, “I just need you to explain this differently.” Because I'm so set in the expectation that if I display any signs of neurodivergency or a need that a neurotypical person wouldn’t have, that they will then target me to fix it somehow instead of actually trying to help
Christina:
And I think at this point, we should define what neurodivergent is. Being neurodivergent means that you have brain structure or brain chemistry that fundamentally, often genetically, like from birth, differentiates from the average brain. So this includes people with ADHD, autism, OCD, bipolar disorder, borderline personality disorder, schizophrenia, dyslexia, a lot of learning disorders. I think PTSD could also fit into this category. “Neurodivergent” is most commonly used to refer to just ADHD and autism. However, it also refers to the wider group of disorders that fall into this category. And neurotypical means that you do not have any of these disorders.
Christina:
The thing you were mentioning before, Vincent, I think that's something that I've seen a lot in responses to autism in the way that autism is commonly treated. That symptoms of autism that aren't really hurting anyone are treated as something that you have to get rid of or that you have to get accustomed to, so that you can fit into the neurotypical world. But there's not really a broader explanation of why fitting into a neurotypical world is important. An example is pressuring children with autism to make eye contact, regardless of whether making eye contact is actually necessary or valuable.
Vincent:
I thought eye contact was going to be a much bigger part of life. From what they told me, I thought it was gonna be the most important thing in the world. I have not thought about making eye contact with a person in years.
Christina:
And were you pressured to make eye contact when you're younger?
Vincent:
Yeah, they were like, “Why don't you make eye contact?” Like, I genuinely – I'm not thinking about it. I've told teachers before, “You're wasting my time.” And it was usually Special Ed teacher trying to treat my autism.
Christina:
Another example of this is pressuring autistic people to become more comfortable with loud noises. Which, once again, autistic people are fundamentally more sensitive to loud noises. It's a sensory processing disorder. That's just how their brains work. It's not going to be less loud to them. It's going to continue being as painful to them. You're just training them to sit through something that's painful.
Percy:
Yes, like training us to grit our teeth and bear it. It really sucks to see where a lot of teachers and a lot of parents will want to treat autism by quote unquote, “curing it,” when that should not be the goal. Our brains are inherently different from others. No matter how much you try to get us to act neurotypical and to fit into your mold. We will never be cured of autism, it is not something that needs curing, and it really sucks to see. It breaks my heart.
Christina:
So let's just talk about, have you ever experienced ableism from your teachers?
Vincent:
I don’t think there really was an opportunity for much ableism to happen.
Christina:
But you were just talking about how special ed teachers forced you to make eye contact.
Vincent:
Okay yeah. [Percy laughs] Oh, okay. Well, if we’re opening the door to that. I was pulled out of class a lot for emotional and social intervention. Whether or not I actually wanted to or not was not part of the equation whatsoever. And I think the biggest issue I've had is that because of the way they treat disabled students, there's nowhere for a disabled student to voice any grievance. Because it's considered “Oh, the IEP team,” and it's – everyone's on that team. Everyone's supposedly working together. And they're, they all report to each other. So if I were to bring up to a teacher, like I did, “I really don't like this other teacher, on my IEP team. I don't trust her. I don't think that she's helping me. I get really stressed around her.” They will report that to the rest of the IEP team and that teacher will call you into her office for two hours the next day to get you to admit that you don't like her. So it's really just, there's no accountability because outside of an annual meeting with the students’ parents, there's no reporting back to the parents. And the student has no say legally until they're 14. But realistically, they don't have a say until they're old enough to stand up for themselves.
Christina Baker:
Can you elaborate at all on what you experienced when you were pulled out of class?
Vincent:
Yeah, so I also was in the gifted program, but I essentially had two separate IEPs. And, as far as I know, two separate IEP teams and ironically they didn't really work well together at all. So my school — and this actually became the subject of a lawsuit that was brought in my name — my school pretty much decided that any sort of intellectual, social, or educational disability was the same exact thing. So you had students with dyslexia learning about social skills and you had students with autism learning about definite articles and grammar. It's worth mentioning that I'm now three quarters of a way through a BA in linguistics; clearly that wasn't a problem [for me]. So it was pretty much decided everyone with a disability, no matter what it was, you have the same special ed curriculum, regardless, and that would be done during class time.
Christina:
I think it's worth mentioning here that that's not how every school handles IEPs. I have another episode of this podcast where the guest says that she had much more individualized education and it was also optional for her.
Vincent:
That would have saved me so many problems. If they just said, “By the way, this is optional.” So many problems.
Christina:
So this is sort of on the same topic. I've noticed that basically every neurodivergent student who I've spoken to has felt like there was a point in their education in which they were punished for having a disability, for symptoms of their disability or because they weren't, acting the way that teachers wanted them to. And we've talked about several examples of that already. But are there any other times when you felt like that was happening here?
Vincent:
My school didn’t know how to deal with me after I had an autistic meltdown. What had happened was that I locked myself in one of the private little bathrooms in elementary school classrooms of one of my favorite teachers, who I had trusted. And I locked myself in there and just cried. Because I was just overstimulated, too many people, too much going on, like I just I needed time. They referred me to the Horsham psychiatric clinic. With the phrasing being used on the phone to my mother, “They have one bed left, you should hurry.” So we went to this clinic. And they're like, “Yeah, you're definitely not a candidate for inpatient admission. We don't know what the hell they were talking about. But if you’d like…” They referred me to their partial hospitalization program. Which was an alternative school placement with students featuring attempted homicide. And then me, who cried in a bathroom. Yeah, so definitely felt a little bit punished there. And then when I returned to the elementary school —
Christina:
Wait, did you go to the partial …
Vincent:
Unfortunately, yes. And then beyond what happened while I was in there, which was bad enough, when I returned to the elementary school, and then they still wondered why I didn't trust them.
Percy:
That's really troubling.
Vincent:
The call is coming from inside the house.
Christina:
Were you diagnosed at that point?
Vincent:
I was diagnosed at that point.
Christina:
Okay, so I feel like if you're – I only recently learned about autistic meltdowns, like a year ago, but I feel like you can just Google like “autism, crying,” and it'll be like, “Autistic meltdowns happen for a brief period of time and do not require hospitalization.” It's very weird to me that they didn't do that. But also, obviously the reason is because they didn't care enough to do that. It's not that weird, the explanation is ableism.
Percy:
Yeah, essentially the explanation for that is ableism.
Christina:
Now, moving on to part two. This was an exceptionally long part one but I think it was worth it. So now we're going to talk about what school would look like if it were made for people with autism or ADHD. Let’s just start with instruction. How would instruction change if it were created for autistic students?
Percy:
I mentioned very early on, I did feel a lack of stimulation was and still is something that I experienced. All the way from elementary school to college. Still, there’s professors who will just stand there and talk and not have any kind of PowerPoint, or will use the same monotone voice, Some sort of understanding of how much stimulation is needed and making it engaging in that manner would be something good to see.
Vincent:
I feel like it would be a little bit more student-directed, too. There’d be a lot more feedback going on between the students and the teacher. And also I feel like it would be a bit more varied to better accommodate different learning styles.
Percy:
Yes, because our symptoms manifest in so many different ways and our needs then differ based on those. So, it is important to have teachers who teach with the students in mind, not just the same cookie cutter syllabus and cookie cutter lectures but accommodating the needs of the students.
Christina:
I have a theory, like a grand theory of teachers with disabled students. This is based on my personal experience also, that it doesn't matter how good you are as a teacher, not related to disabled students. It doesn't matter how hard you try. A teacher who's not trying hard but also who isn't being, like, rude to the disabled students is better than a teacher who is very educated and up on the latest teaching and everything and trying hard and respected, who is not deliberately trying to accommodate disabled students. I've had teachers who were the heads of their department who accused me of lying about symptoms of my disability. And I also had teachers – one of my teachers in high school put no effort whatsoever into classroom management. It was kind of ridiculous. And one of my friends who had ADHD was in her class and she was constantly just talking to the teacher back and forth while the teacher was trying to go through a PowerPoint. And she was constantly chiming in with her thoughts and the teacher was like, “Oh, that's silly. Whatever, I guess I'll talk to you.” And I honestly think that my friend was more engaged in that class. I think that helped her learn, because finally she didn't have a teacher shutting her down whenever she tried to contribute. I appreciated that a lot. And I think that teachers who have a very strict approach to classroom management, or at least who have – who try very hard and I feel like when you have teachers who put a lot of effort into, like, curating their schedule, and can be kind of unflexible with the way that you need to learn. And I also feel like they can penalize students more when those students fall out of their expectation of the average student. And that ends up penalizing disabled students specifically.
Percy:
I keep coming back to the thought that, in school, all throughout school, teachers have penalized me even when I was trying to ask for help. I got shut down. That kind of instilled this idea that, well, I shouldn't need to ask for help. I should just be good enough. And so now in college, when there's a lot more flexibility, a lot more flexibility and professors are a lot more understanding, in my experience. I still feel this guilt and shame. “Oh, I shouldn't have to ask for help. I'm too embarrassed.” And so then it leads to this cycle, because I'm not asking for the help that I need. I'm not doing as well as I could be in school, even though now I actually have the opportunity to.
Vincent:
I feel like the best thing that I've ever had a professor do, and I do this. I'm designing a course for next semester. So I put this in my syllabus, and I plan to continue putting it in syllabi that I make. She called it her general accommodation statement, which basically just said, “Life happens. If you have problems with life in this course, let me know as much as you want to and we'll work something out.”
Christina:
I saw a professor on Twitter put her syllabus and one of the things is the deadline policy. And she had ADHD, and she wrote, “Adults miss deadlines all the time.” One of the lines in the syllabus was, “I am currently a year behind on a journal article that I'm supposed to submit.” So she said, “Students also miss deadlines. That's to be expected. Everyone misses deadlines. Don't think of my deadlines as anything that can cause stress in your life. Deadlines can be very helpful for people with ADHD, but they can also be stressful, and if they're stressful or if you miss them, that's fine. Just make sure you get it to me in time that I can grade it before the class ends.” And there were a couple other things in the syllabus.
Christina:
That's something that appears a lot in, for instance, the book that I base this podcast off of, which is called Learning Outside the Lines and I'll put that book in the episode notes, that accommodations that will be helpful for students with ADHD or students with autism can also be very helpful for neurotypical students. Neurotypical students can also have issues with deadlines. They can also be stressed out, they can also have had bad relationships with teachers that led them to not want to reach out for help. So making things easier for students who struggle with executive dysfunction as part of a disability also makes it easier for students who struggle with executive dysfunction because it's a part of the human experience.
Percy:
Yeah, so all this goes back to, our ideal school experience would be something that allows for flexibility, that does have the flexibility and the deadlines. And both, I think, the ability to reach out to teachers without the fear of judgment and for teachers to reach out to us. Just active communication between student and teacher, rather than being afraid of possible judgment or punishment.
Christina:
I have a very long rant about this — it’s probably not that long. I have a rant about this in the episode about ADHD and central auditory processing disorder. So if you want to hear more about this, please just go to that episode, because otherwise I will start ranting about it right now. But yes, I think that teachers reaching out to students, it would be nice if that were our new norm.
Christina:
And do you guys have anything to say about what classwork would look like in a school that was created for autistic people?
Vincent
I'll go back to the same professor that had that statement in her syllabus. Her classroom was all simultaneously – like there was a point to every assignment. This was also part of the — it was linguistic fieldwork. So we all had our own little interests and research wants and needs. So all her assignments were kind of like, “do something with the sounds of the language” or “do something with the grammar,” but we would get to pick kind of how we formatted it, how we did it, what we included, what we didn't. She would kind of just send it, she would send an email for every assignment [saying] “Here's the guidelines; if you’re within these, that's good. If you're not, let me know.” It really was mostly just “show what you know about the subject.” And the way she graded was, she would go through and say “Okay, this makes sense.” She said, “You might want to explore this a little bit more,” but she would never penalize you for forgetting something; she would always give you a suggestion to improve it later. So I think that would be an important aspect.
Percy:
I second that. In terms of exams and testing I think that for me personally, again, everybody has very individualized symptoms. I can't do tests that require memorization. I think cutting those out entirely, having things be open book would make a lot of exams. I would actually be able to complete them without struggling. The expectation that we have to memorize every single term. And that's happened all throughout every grade of schooling. It's just almost impossible for me as somebody with ADHD and memory issues and autism. So I think getting rid of exams that require memorization would be great.
Christina:
Something that I talked about with some of my friends who are neurodivergent is that a lot of this should be sort of up to students. Because a lot of people, even autistic people, are very good at memorizing things, and love exams and don't like when there's a big essay that they have to write at the end of the class. And so for them, they might prefer using exams that have memorization to other types of exams. For other students, exams are very stressful for them and they prefer to do a project or an essay at the end of their classes.
Vincent:
I feel like the biggest thing that would have to change isn't something particularly curricular or structural but just you would need to have it staffed by a set of teachers who trust their students to communicate with them and who accept that kind of communication from their students. I feel like a lot of problems could be resolved if a teacher would just invite some feedback or if a teacher would make it known that if you come to me for help, you will get help, and you won't be judged.
Christina:
I wrote a story for the Centre Daily Times one time about these exercise classes for adults with intellectual disabilities and every move of, every type of exercise, every, like, step in the workout routines that they were doing. There were three options for different levels of abilities. And they didn't call them modifications, they called them variations and they said that they chose that word very specifically, because they didn't want people to feel like they were getting something easier than they needed. And also every time that a variation was possible, they left it entirely up to the people in the class. Because learning to advocate for yourself and learning to choose something that's easier for yourself, or that works better for you, is a really important part of having a disability. And that really got me thinking that I was never taught to do that. I was never taught to ask for something that was easier for myself or to ask for something that worked better for me. And I think that that would be a really important part – learning to advocate for yourself, being able to articulate your feelings and your needs, and why it's important that you get something that's easier for you, and learning that that's an option that you can ask for. I think that's something that would be really important to teach in any school for people with disabilities, but especially for people with autism.
Percy:
Yeah, for sure. I think one of the biggest takeaways is that no person with autism and no person with ADHD, no person with any kind of neurodiversity will experience it the exact same way and trying to fit us into a binary or into a box is counterproductive. So, having the ability to decide how we want to kind of vital. It's gonna benefit neurotypicals as well, but especially neurodivergent students would benefit from that and it's almost a necessity.
Christina:
Also, you guys were talking about how you didn't know what symptoms of your disability were, like you didn't know the sensory parts of autism. For instance, Percy, you didn’t know that the reason you were doodling was because that helps you focus. I feel like a school that was created with autistic students in mind would sort of talk about that, right?
Percy:
For sure. So a lot of treatment is done by neurotypical individuals, or at the very least, people don't experience the disability you have. So like, I've never gone to a therapist that has ADHD. I think that — not necessarily seeking out teachers who are autistic or have ADHD. But for example, my doctor, the doctor who diagnosed me with ADHD and diagnosed my dad with ADHD, has ADHD. Her own experience was able to help us because a neurotypical doctor wouldn't have recognized that. And I had a point here to make but I don't know how to.
Christina:
Would it be that if you don't experience the disability, you can't really explain it to students or their parents?
Percy:
Yes, exactly. So I'm not saying like every single teacher has to have our same disability, but that if we were to learn about what our disability is like and how it manifests. That sort of class, in our hypothetical school, if we are going to make that a thing. That should definitely be taught by somebody who has experienced it themselves and who it's not just a hypothetical for them, but it is actually their lived experience.
Christina Baker
Yeah, like I had a class in high school before I was in college where they teach you stuff like study skills or how to be good at taking tests and stuff like that. And I feel like that sort of thing, it would be nice if they also talked about how to manage your disability. I mean, you're both in therapy right now, right? Learning how to manage your disability, paying for it with your own money? [All laugh]
Christina:
So is there anything else about the structure of classes or the way that things are handled that you think would change?
Percy:
I would just say, like we mentioned earlier, have it be less structured, have the structure be kind of like Legos, have it be able to be rebuilt based on the needs of the students or of the individual. Obviously, still means structure to an extent, but could I tell you exactly what that structure should be? No, because it would be different for every class for every student.
Vincent:
I don't know why neurotypical teachers are obsessed with the idea that autistic people need structure. They're so obsessed with it. I had a teacher in elementary school tell me, like, “We're gonna change the schedule. Like, that's gonna be hard for you.” And I was like, “No, it's not. Just tell me.” I don't need to have a structure. I just need to feel like I have some sense of control. There's a distinction between these two things.
Percy:
Yes, exactly.
Vincent:
Having a substitute teacher is not the big deal they think it is.
Percy
And for some people with autism it might be a big deal, but not everybody experiences it in the same way.
Christina:
So the book that I mentioned earlier, “Learning Outside the Lines,” and it was written by someone with ADHD and then another person with dyslexia. And they said that project based learning is probably the ideal mode of evaluation or instruction for students with ADHD. Do you agree with that?
Percy:
Yeah, as somebody with ADHD, it depends on what they mean. If they mean a long term project that is over the course of an entire semester, and you know, you have to have check ins and deadlines for that. I personally, from personal experience, I don't like those. But if it comes to, oh, writing an essay about something, instead of, oh, let's take a test about something I would much prefer the essay. And that's just for me personally. I don't know if that answers your question.
Vincent:
No, I definitely agree. When I was writing the syllabus for the course that I'm designing, I accidentally basically did that. So I didn't put any exams. I didn't – I had some quizzes but my intent was for them to be open ended. Very “what do you understand” questions. Not like, “Was this included in the Juergen file or Wylers-Scott?” like no, I'm not gonna go that far. But I've definitely noticed that in classes where there's not a full semester long project, but little check-in projects, like, “Oh, we're gonna take this concept and apply it to something,” that is a lot more helpful than just writing about something, to me.
Percy:
Yeah, especially like, with an exam, you are just taking it in the course of like, an hour, maybe two hours, and you have to just dump out all of the knowledge you already have. Whereas with a project, you get the chance to take it at your own pace and to use outside resources and not have to memorize everything and just being able to, you know —
Vincent:
Outside of disability accommodations, I think that memory-based assessment is a very poor indicator of content understanding.
Christina:
And at the same time, I know personally for me, I'm sure I learn more when I'm asked to do a project and I'm sure I gain a better understanding of that. On the other hand, sometimes I go into a class and I already know the material. And in those cases, having a project would be more work for me. And so in those cases, I like to just take an exam and be done with it. And I think that that's something that you can leave up to individual students because being in college and being disabled is very hard. And so sometimes you want the easy way out. And so project-based learning would be great for helping you actually learn concepts but when it comes to your workload, sometimes it's best to keep it simple.
Percy:
Yeah, it would also, it just occurred to me now that we're applying it to the concept of, like, college. It also depends on what the subject matter is. If it is something that I am passionate about, and that I understand really well, I am going to want to do a project. Whereas… you know what? Cut that part out, I just realized that's not true at all. Because I'm thinking about it, like if it's something I don't understand at all I am going to do if it's something that I understand really well. I might — no, I still want to do a project! Because I want to, I'm passionate about it. And so I want to do a project.
Christina:
And I think it also depends — I’m not cutting that out. Because I think it also depends on whether you feel up to it. When we were in the pandemic, and I had to learn from home, even if I was passionate about something I was not up to spending a lot of my time on that because I was already exhausted from taking online classes. So it really depends on sort of your emotional state.
Vincent:
It also depends on the professor and how well they sell the content and the project. I had a class or at the beginning we were like, “Oh, this is a cool little final project here,” and you could do research and make a poster. And then by the end someone literally typed into the Zoom chat “Can we just have an exam?” [All laugh] And we were all in the GroupMe for the class, like “Someone said it, someone said someone finally did it!” And she just looked at it and she's like, “Can we just have an exam? No, we cannot have a final.” But yeah, in the beginning, we were like, “Okay, we can do it!” And by the end we were like, “just give us an exam.”
Percy:
Bringing up the pandemic in the idea of their emotional ability and your mental daily to do projects and or to do exams. Something important to include in a syllabus or in a school system that accommodated people with ADHD and people thought would be that our disability does fluctuate in how, quote unquote “disabled” it makes us. There are days when I wake up and I'm like, “I can't concentrate on anything. I can't finish any work. I'm having a bad day.” And there are other days when I can actually function almost like a normal human being. And so that can also go back to a larger extent where there will be months when my ADHD or autism is worse, we'll say quote unquote “worse” than normal, and just that it's something that would have to be kept in mind. And that would be accommodated by having these students make a lot of their educational choices for themselves.
Christina:
Yeah, that's a really good point and also that in a system that was accommodating autistic students and ADHD students, you would be able to communicate that to your professors. Sometimes when I'm talking to professors I will try to find anything other than my disability to blame stuff on or to ask for an excuse. I'll be like, “Well, I'm feeling kind of under the weather.” I'll be like, “Oh, no, it's that time of the month!” Or one time my sister was in the hospital and she was fine. And I'm sure that didn't help me do my work, but also that was not my problem. And so I was emailing professors like, “My sister is in the hospital. I'm so sorry. Can we please – can I miss class or can I have an extension on this?” That obviously wasn't the reason that I needed help but they didn't– it was happening concurrently. So that's just what I blamed it on. And Vincent, I remember you —
Vincent:
So I definitely had a few stomach bugs that weren’t stomach bugs. But I feel like it's definitely a thing where it depends on the professor, depends on your relationship with the professor. I sent out an email this morning that was: “Due to unfortunate circumstances involving a dog and a psychiatrist, I now have a CAPS appointment during our lecture and won't be there.” I've also sent an email to a professor that very plainly said, “My dog died and my psychiatrist said they can't help me anymore. I'll see you on Thursday.” I've had that professor for six semesters, so we're past the point of vague politeness. But you know, it's definitely something where eventually you just – at least for me, I got to a point where I'm like, “Okay, their opinion is not my concern anymore.” At least in my case, like I have the accommodation, they can't tell me no. If they judge me for it, that's their own problem. Also, if it's within the syllabus, like they can't really do much. If they're like, “Well, I don't see the reason to miss class.” I'm like, “Well, your opinion is not my concern anymore.”
Vincent:
My mom passed away my freshman year of high school and I just had a really hard time with it last year, it was like six years after it happened. And I emailed one professor, and I said, “Yeah, I have a stomach bug I’m not coming to class.” And then I emailed another professor that was like, who I had had for multiple semesters and I was like, “It's been six years since my mom died. I can't do this today.” And I was actually – I knew he wouldn't be upset, but there was a part of me that's like you know, like, “six years ago,” I was almost judging myself.
Percy:
I experienced kind of almost the exact same but sort of the opposite. So it was now a year or two after my mom died. We have different moms for the record. A year or two after my mom died, I just, I was having, I was overwhelmed with homework. I was just, I couldn't do it that day. I asked my dad, like, “Can I stay home from school?” And I didn't say why. He said, “Oh, because, you know, it's the anniversary of your mom dying.” I was [sarcastically] like, “Yes, that's why.” And it's a similar thing where there's just the shame of being neurodivergent. Where I don't want to admit that that’s the problem. I will say, “Oh, I had something.” Or even if I do admit, “Oh, it's because I have ADHD. But I'm getting treatment for it!” It's just the shame of all of it.
Christina:
I did another episode with a student whose disability is that she gets a lot of migraines. And she said that sometimes when she is having difficulty with her mental health and she can't do something, she will blame it on migraines. And she does sort of the opposite where she's like, “My disability is preventing me from doing this,” even though really it's just that she has depression or something. And she said that she has to sort of guess which excuse, like mental health or disability, will be more acceptable to whoever she's talking to. She'll be like, “This person seems like they actually aren't going to take my health problems seriously. So I'll tell them that it's mental health.” Or, “This person does not seem to know anything about mental health. So I'm going to tell them that I got a migraine.” And it's sort of perverse that we have to guess at what people will be willing to accommodate. But, life hack: develop two problems and then be able to blame it on one or the other.
Vincent:
Life hack: if your problem isn't convincing enough, just make a bigger problem.
Christina:
Life hack: have a relative who gets hospitalized a lot. So you mentioned, Percy, remote learning earlier. How do you guys feel about remote learning?
Percy:
Depends on the course. And depends on the professor. And depends on my mood. It comes back to being under-stimulated during a course, it's sometimes worsened with online learning because you know, I have this device right in front of me. And I can go on Google and I can look at other things and next thing you know, I have been tuning out the professor for the past 20 minutes and I don't know what's happening. But at that same time, on the bad day where I am overwhelmed, mental health-wise or disability-wise or anything, I can stay in bed on my phone and still have lecture up and still get attendance. And just there are pros and cons.
Vincent:
You know, if I have the energy to get to campus, usually I prefer on-campus learning. If I don't have the energy to get to campus, online learning is a great alternative.
Percy:
Yeah, I – it all comes full circle where having the flexibility, and the option of “I can't get out of bed today. I need to be online.” That would be great. But ultimately it is a lot harder for a lot of students with ADHD and autism to learn that way.
Vincent
I will say I'm a big fan of virtual office hours because they're a lot less intimidating than going to an actual office. I have one professor who I'm meeting with tomorrow to discuss my accommodations who I pretty much was like “I can set up a Zoom Room. Can we do this? Like I can do Zoom on 2:30 But I can't do in-person because I actually went to another meeting.” And he’s like, “Can you do Pond Lab next Wednesday?” Like, yes I can go to Pond Lab but why?
Christina
And do you have any other feelings about, like, technology?
Percy:
It can make school a lot more accommodating. But it can also, if it is forced, in, say, a worldwide pandemic. If it is the only option, and the teachers are not trained to do online learning or to use technology at all, it can be difficult and not ideal
Vincent:
I would also like to voice vocal opposition to exam proctoring software. Get out of my personal space. This is my laptop. Go away.
Christina:
Wrapping up part two. Are there any other thoughts you have about what a school for autistic people or ADHD would look like?
Percy:
I want to be able to use some kind of fidget toy in class and not be judged for it. It's a very small thing. But having to play with the end of my sleeves because bringing a stuffed animal or a tangle would be seen as infantile, when for me it is just, it just does help. And that would be a very small thing, but would be something to be considered.
Vincent:
We have this at Penn State but add/drop week. At my high school, we were expected to have our schedule by the prior April. I think it's really helpful to vet a class or a professor. So if that could trickle down to K-12 that would be great.
Christina:
Okay, so I think that wraps up part two. So part three is talking about how you cope within the current system. So outside of your accommodations, are there any strategies that you use or any outside help that you use to navigate college at all?
Percy:
Adderall. I mean, I am prescribed Adderall and I take it now that I have been prescribed it. Having a strong support system also helps. And yeah, that's pretty much it.
Vincent:
I try to go home in the middle of the day if I can. I'm a commuter, so I live off campus. Tuesdays and Thursdays are a little bit harder. Monday, Wednesday, Friday, I usually am able to get back to my apartment and make lunch in my own kitchen, which is a nice break from seeing a bunch of people and walking around campus. At least on Monday and Wednesday. My second class is after four so transportation services doesn't care where I park. So for me, it's really helpful to just be able to go home and then when I come to my last class, it's really just a two minute walk. It doesn't feel as daunting having class from 11 in the morning to six o'clock at night and when I have that break in between.
Christina:
Both of you said you have therapists, right? Is there anything that your therapist has taught you or that you've worked on with them that helped you in college?
Percy:
I'm still working on it. My previous therapist, she really helped me with my anxiety, my depression, my self esteem, but she did not specialize in ADHD at all. Although she helped me a lot in so many different areas, that was one thing she couldn't offer me I guess. So now I'm seeing a therapist who does specialize in ADHD and ultimately it's just been a lot of giving myself more of a break. Like I was saying earlier, I feel “Oh, I don't really need these accommodations. I'm like, taking up space.” I'm putting myself down sort of, ultimately, a lot of what my therapist is teaching me is to unlearn that internalized ableism, that internalized cruelty to myself, that teachers in the past gave me as somebody who was neurodivergent. I now give that to myself. And work through that and just give myself a break. Let myself have ADHD, let myself experience my disability and don't feel this internalized shame for it. In terms of coping with having ADHD, with being bad at deadlines and being autistic and having sensory issues. That, again, I’m still working on that one. But ultimately, it is something that my medication actually helps a lot with. And it's just the balancing. And it is, it's a constant process. It's not like one day I'm gonna wake up and [say] I've got it all down. I can do this. I forgive myself for having ADHD. I forgive myself for being autistic and I'm good to go. It's an up and down and it's a constant process.
Vincent:
I've definitely been working on the same thing. What’s really scary for me is that I did actually wake up like that a few weeks ago and I'm afraid that it's gonna change. I'm afraid it's all gonna go away like it was some kind of weird fever dream. But the biggest thing my therapist has told me on multiple occasions is that it's okay to just not be okay sometimes. Like we had a whole session one time where we started on the premise of “I'm going to try to forgive my guidance counselor from elementary school for all the problems she caused me” and by the end of the session we had pivoted to, “You know, it's okay that I'm a little bit pissed off.” And that it's not a bad thing to just have emotions that exist and be able to feel those and love those into your life and that you don't have to separate your disability and your symptoms from your productive life. Because I felt like for the longest time I was trying to deal with all of my autism and depression and all of that while simultaneously trying to function as a completely normal and or neurotypical college student. And I was like I was trying to put the energy of being two people into one and kind of learning that it's okay to just be neurodivergent college students with different needs and some people and not having to compartmentalize.
Christina:
Are there any physical tools or apps or schedules or something that you guys have found works really well with your disability? Like any fidget toys or calendars or whatever?
Percy:
For me, I pick at my fingers a lot. So having – like I'm doing it right now because I don't have anything else to fidget with. So having something like a tangle where I can just fidget with it, something like that really helps. Having, sometimes, something soft really helps me sensory-wise.
Percy:
Also another [thing that] technically falls under physical tool is — some people will say, “Oh, this is only anecdotal,” but like anecdotally, this happens to me with my ADHD medicine. If I have a juice or something that's very high in vitamin C, my ADHD medication will not work. So I guess that's kind of just something I really wanted to mention is that anecdotally, if I have some of my high in vitamin C or with ascorbic acid, or citric acid, my ADHD medicine will cease to work if they're in my stomach at the same time.
Christina:
So do you guys have any advice for talking to professor's when it's difficult?
Vincent:
Yeah, all I can say is ask. If you can do it during add-drop week, do it during add-drop week. Other than that, just communicate and hope unfortunately, that's the best you can do today.
Percy:
And it's just so difficult to predict how this will respond, especially when you have anxiety about, “Oh, man, I shouldn't even be asking at all, they’re just gonna say no.” You won't know until you try.
Vincent:
If you're at a school that requires them to put something about disability in the syllabus, pay attention to how they talk about that on syllabus day, because I've definitely had my worries put to rest by the way a professor has addressed that section of the syllabus. Sometimes it can either give you a little heads up, like this might not go too well for you. Other times it can be like okay, you're confident you can definitely email the professor about it and they will not have any issue.
Christina:
I feel like the majority of the time when I hear professors read the disability part of the syllabus, the vibe I get is they really haven't thought about this at all. That's the main one I get. I'm like, “Is this professor gonna be cool? Is this professor gonna say something extra?” And then they read it pretty much the same way they read “the don't plagiarize things” section.
Percy:
Yeah, like it's just in there because it's required to be there not because they actually care.
Christina:
So, is there any advice that you would give to other students who also have autism or ADHD?
Percy:
I already kind of said this, but don't don't be afraid to ask for help. It is so much easier said than done. But well, the worst case scenario they'll just say no. Best case scenario, you'll get the help that you actually need. And the step before that: Do admit to yourself that you do need help and that is okay to ask for help.
Vincent:
Yeah, definitely ask for help and let yourself have good days and bad days. If you're having a bad day, and you're spending the entire day trying to fight, whatever it is that's bothering you, whether that's sensory overload or depression or whatever, it's going to be 10 times worse than if you just said, “You know what, today is not the day. I'm going to take care of myself.” So let yourself take care of yourself because often that can turn a three day depressive episode into a one day depressive episode, I’ve found. If you just instead of trying to push it off or fight it, you just say “today's not the day, gonna let myself relax.”
Christina:
And what do you wish professors knew about ADHD and autism?
Percy:
I don't not care about your class. Matter of fact, oftentimes I care a lot about your class. It's just that my brain doesn't work to get your assignments done. And to do well on your quizzes. I always worry so much that I'm being disrespectful by being or neurodivergent and by displaying that neurodiversity in my schoolwork or lack thereof.
Vincent:
For any professor with a neurodivergent student or a neurotypical student, be open to communication. Be as flexible as you can, realizing that even though not everyone has a disability and the students that don't have something happen in the middle of the semester that requires attention that they might not be able to get documentation for right away. So talk to your students. And if a student comes to you and asks for help, the best thing you can do is just ask what you can do.
Christina:
This isn’t just pertaining to autism or ADHD, I just realized that I haven't said it on any of the episodes but I wish some professors knew that just because something’s on your accommodations letter doesn’t mean that’s the only thing we need. And sometimes I wish professors would ask “Is there anything else I can do? Is there anything beyond this that you need, that isn’t on your letter?”
Christina:
Are there any resources, like books or documentaries or social media accounts that you would offer for either people who want to learn more about autism and ADHD or for people who do have autism or ADHD?
Percy:
There was one you recommended to me, I think. It was an Instagram account.
Vincent:
Oh, I remember this! Was it Autisticats?
Christina:
Yeah, for some reason they haven’t posted anything in like two months, like since I told you that they just stopped posting.
Percy:
Oh no! Okay, well nevermind then. Yeah, they haven’t posted since November.
Christina:
Yeah, I'm still gonna recommend it though. The Autisticats, just like scroll through their back catalog. They're not posting right now. But if you scroll through all the posts they have on Instagram or Twitter, you learn so much.
Percy:
I’m trying to think, because I know I follow autism social media accounts.
Vincent:
There’s so many people that I follow on TikTok and I can’t remember any of their names.
Percy:
I follow an Instagram account that posts autistic TikToks, so I guess I would recommend that. @ActuallyAusticticTikToks. Some of them are just kind of joking and funny but a lot of them are kind of insightful and interesting.
Christina:
I have some in the back of my head. First of all, the book Learning Outside the Lines, which I have already plugged and probably will be plugging in every episode. Second of all, Rene Brooks, she's @blackgirllostkeys on social media. She's an ADHD coach and by following her I also learned about all the other ADHD accounts I follow because she’s very involved in the community. But also, her blog has a lot of information about ADHD, especially from a Black woman’s perspective. Then there’s Dani Donovan, especially on Instagram, she makes really cute cartoons about ADHD but also they’re about how emotionally it can affect you. And I will put all of these in the episode notes.
Christina
Well, this has been Beyond Accommodations at Disability U. If you'd like more information about the topics discussed today, please check out this podcast website and make sure to listen to the other episodes. As a reminder, this podcast is intended to be one part of a larger conversation about disability in education and disability in American life. I hope you keep listening.
Music: “Shaolin Dub” by Skinwalker
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