Neurodiversity Rights with Dr. Amy Edwards

Q: If certain people walk with advantages and disadvantages, are titles to their conditions needed? (For example, does a tall basketball player need a title for his physical privilege and a person whose senses can detect, connect, and see patterns need to walk with a hat titled Autistic?)

Edwards: Um, no you wouldn't. I mean, it's a little different because you can see that there's a tall basketball player standing in front of you. You're not going to know if someone is on the spectrum or not, unless they either tell you or someone else tells you. So that's kind of how, you know, you wouldn't. And the other thing is, is, is in naming, for example, I go back and forth and how I, I use autis–I either say autistic people or people with autism, I most likely say people with autism, but he would never say, you would say a Jewish person. You would never say a person who is Jewish. So again, it just depends on the person and what they prefer.

Q: What are the biggest misconceptions you’ve faced in your life?

Owlia: I think the biggest misconception I face is just understanding the social skills and, you know, sensory issues. Like, people assume that because I have autism, I can't do certain things and I've, I've gone to parties, you know, I've gone to bars, I've, I've drunk. You know, I've done so many enjoyable stuff, but you know, I may not enjoy, but it's not because I'm autistic. It's not the sensory thing, it's just not my scene. You know? And, and I, and I appreciate people trying to talk slower, trying to understand me or trying to at least like trying to quote-unquote dumb themselves down for me to understand it, but I completely get it. I completely understand. I'm just like any other person, you know, I have feelings, I can process things I can understand completely. And, that's just the way it is. I think that's for me, the biggest misconception I faced is that socially, I'm inept, but I'm not in inept. I just think a little bit differently.

Edwards: Right. And I think, you know, kindness, patience, and respect can go a long way.

Q: How do people treat you differently because of autism and how can we avoid doing that?

Edwards: So, um, from what I've seen, I've seen, you know, people with autism, when, when people find out that someone has autism or a student has autism, they give exceptions the, "Oh, Oh, they, Oh, okay. They're autistic. Oh, okay." Which doesn't really do anyone any good? You know, if you have a student who is, you know, like we had a student who, um, excuse me, had done something wrong and one of their assignments and wasn't corrected because, "Oh, well the, have they have autism," it's "they didn't know any better." They…well, the student never learned any better. So then the next couple of classes, the student made the same mistake in assignments because no one corrected them. You know, you're not helping anyone by, by allowing exceptions. There's one thing about accommodations. There's another thing about exceptions. So I think it's important to make sure you're treat, just treating everyone, you know, again with kindness and respect, but also being fair to everyone the same way.

Owlia: I feel a little lucky in the fact that because, like, my autism isn't really well noticeable that I haven't really been treated as differently as I know others have. But in my case, I think it's just, you know, I've always been more of the sensitive kind because of that. And I've been able to, you know, been able to open myself up to people and help and have people open themselves up to me. But I think it's also people forget that behind all of this, even though I can take it, I do have emotional awareness and I do have a problem absorbing things. So I think partially people forget that I'm not just some person who can listen and just absorb it and take it all in. I also need support as well. So I think people just don't realize that, you know, sometimes I need, I need someone to talk to. I need someone to do all that. And you know, people assume that they can do the talking to me, but I don't have to do talking to anyone else. But, of course I have to talk to other people. I mean, that's, I think that's one of the ways people treat me differently because I know others, they don't, lean on so much because they know that, Oh, people are going to talk to other people. But with me, they assume, "Oh, I lean on you and you'll be completely fine." No, I mean, I'm just the same as everyone else.

Q: Assuming we can tell if a baby is autistic before it’s born and we can change/prevent it, should we?

Edwards: No. I've seen plenty of times where people would get, you know, tests done on their child beforehand and they'd find something out and they'd be horrified and, and do everything they can to prepare themselves. And then it turns out that it either wasn't quite as severe as they thought it was, or the doctor was wrong. In the same breath, you know, as much as you like to think, when you have a child, they're, you know, they're perfect. No child is ever perfect. We're all human organisms that are, that are made of, you know, if you look at it from a biological standpoint, made up of this conglomeration of cells. So no one is perfect. So if you were to have that theory and none of us would be here, put it that way, just because something's wrong, doesn't mean you should terminate a pregnancy or, um, do anything drastic.

Owlia: I feel, I feel the same way personally, because everyone has their imperfections. That's what makes us unique. I mean, I know I just quoted, "Bicentennial Man," but I completely agree with that statement.

Q: How do you think autism has affected your life?

Owlia: Hmm, well, I'm doing this aren't I? So it's impacted my life greatly. Ever since I learned about the diagnosis ever since I learned now, this is part of who I am. You know, this is something that impacts me greatly. I've worked with people on the spectrum because I know how lucky I am to be able to do something like this. You know, it's impacted my life amazingly. If it wasn't for this, I wouldn't have met Dr. Edwards while I was at Drexel. If it wasn't for this, you know, there's so many opportunities in my life that I would not have been able to have. If it wasn't for this.

Edwards: It's just opened my eyes to how everyone is, is different in some way, whether it's autistic or it's, you know, you just kind of meet people and you just embrace other people's differences, you know? Cause that's what makes everybody different.

Q: I found out recently that autism is diagnosed in girls far later than in boys and I’d like to know why that is and how better support can be provided for girls on the spectrum?

Edwards: It's actually getting, it's getting a lot better. But originally, when they came out with the diagnostics, they were geared more towards boys because boys, behaviors are a little bit different in boys than they are in girls. Um, girls tend to want to fit in. They want to not make a scene. They want to not cause any type of disruption. So they go with the flow and they watch other people and kind of keep under the profile. Whereas boys, boys will act out, behave badly, so to speak, which causes attention and then they will get diagnosed. They are now changing that a little bit, I think, and I am not on the diagnosis side of things, so I don't want to misspeak, but I know that they are looking at different factors now a little bit. And there are actually more girls coming into the program at Drexel as well. So things are changing, which is good.

Q: In what ways does being on various ends of the spectrum affect the rights they are entitled to? Is it solely based on people’s presumption of how capable people with autism are or is based on scientific evidence of showing the capacities and abilities of those further on the spectrum vs those who are labeled “functional?”

Edwards: So, I'm going to answer those question the way I think you're asking it. So, within the diagnostic criteria, there's different levels of autism as far as the supports that they get. I guess it depends on the person and what their cognitive abilities are. I mean, if they're not able to cognitively make decisions, then they may have to have an advocate who can, but then at the same time, there's a lot of people who are capable and cognitively aware who can make their own decisions. So it depends on the person.

Q: What kind of efforts or innovations have been made based on autism research?

Edwards: We have the Drexel Autism Support Program. Um, I think, I think through research there, you know, it's ever-evolving, which is great. I think they, um, are learning more all the time, but they're also enhancing the supports that exist and realizing that in order for people to be successful, the environment around them is going to have to change, not just the person. So I, you know, like different employment needs, different employers who are changing some of their, their programs or helping more people become employed is great.

Q: Why isn’t high exposure and education on autism more readily available to schools across the globe?

Edwards: Um, I know that internationally it is, we, we do have a lot of international contacts or people that we work with, different neurodiversity initiatives. So, on the higher education side of things, there are, it's definitely getting there. Um, but I think it's still new. I think it's, you know, a lot of the supports are just starting to be disseminated. We've had supports in K-12 for a really long time, but we haven't really had them further than that. So it's, it's a newer, it's a newer piece, so to speak. And I think that a great point, you're also talking about different cultures and different ways of living and the way societies have evolved.

Owlia: One quick thing that I noticed, because I, as you know, I lived in Hong Kong for many, many years. And you know, when I was there, autism was so much different. I remember, last time I went there, it was probably Christmas, last year, I was watching the English language channel that they have and they have, "Good Doctor" on, on prime time. I think that's on Saturday nights. I forgot, I forget what it was. They did something which I think is amazingly beautiful, right before they did "The Good Doctor." They have a documentary every week on autism, so people can be more educated as to what the, what the actual thing on spectrum is before they watched "The Good Doctor." So they can be more aware of what's going on as they watch the show, which I just find absolutely beautiful. You know, I mean, there are some societies who aren't, who aren't going to be as open about it as others, for obvious reasons. There are still some people who find it to be some kind of mental illness, which is a shame because it's not, it's been proven not to be, but, you know, I think that would depend on where you are on the planet.

Q: I would be curious to see if people with autism like having autism?

Owlia: Now keep in mind, there's 6 million people on the spectrum, mathematically speaking. So, I can't speak for every one of them, but in my case, yeah. I mean, I like it. I mean, it's a part of me, it's, I can't say I like or dislike it, but honestly it's given me some good insights in life. So, yeah. If it comes down to liking or not liking, you know, I'll say I like it. That's fine.

Edwards: How would you know the difference? Like if someone saying, well, you know, how would you feel? Would you feel better if you had brown eyes or blue eyes? Well, if you have blue eyes, how would you know what it's like to have brown eyes? So, kind of the same thing.

Q: What are the best ways for high-functioning people on the autism spectrum to go about the job search process? For example, if they're looking for "good jobs" is the best place to start with people they know and know well?

Edwards: There's a lot of different avenues to take. If they're in college, work with their, if they have a, an autism program work with our autism programs, work with their, their co-op or their, their career center in college. If not go to vocational rehabilitation, they can help with a lot of different job searches. They can help with a lot of different ways to search careers. If you're one to search careers, there's a lot of different ways that they can help. And, you know, it's, it's completely up to the person if they want to disclose to the employer, if they're on the spectrum or not, that's entirely up to the employee.

Q: I think my big questions are about the variety of ways that the autism spectrum presents itself. How can I, as a teacher, help recognize kids who are Not yet identified and would benefit from further support?

Edwards: Uh, as a teacher, like a K-12 teacher or a higher education teacher? So, a K-12 teacher, they would speak to their educational psychologists in the school and talk to them a little bit more. In higher education, you cannot ask if a person has autism, obviously. What you can say is, you know, "were there any, was there anything that helped you be successful in previous educational settings?" And then, from there, you know, I, I wouldn't focus so much on whether they're autistic or not. Focus on where they're struggling and how you can help them. I don't require a diagnosis in my program just for that reason. One, because a lot of students aren't diagnosed and two, I don't really care what your label is. If you're struggling as a student and you need help, I can help you or I can point you to the right place to go for help. It doesn't matter to me what the label is.

Q: How do you determine if someone has autism versus if they are just socially awkward?

Edwards: So that goes to back to what I was saying just a second ago. Does it matter? Do you find out if they have autism, are you going to treat them differently than if they're just socially awkward? So, if they're just socially awkward, are you just going to be mean to them? Like, what, you know, I just think like, as I said before, kindness, patience and respect go very far. If you treat everyone equally, it shouldn't matter. So, you know, if they are socially, even if they're not socially awkward or they are, you know, help them along, if you can.

Q: What are subtle examples of ableism in the learning environment (in classrooms, etc.) that are harmful and need to be changed?

Edwards: I think the, the, and if this isn't ableism, feel free to edit. But like I said earlier about the, you know, making exceptions for people because they have a label because they have autism is doing them a disservice. I don't know of any other ableisms, to be honest.

Owlia: In this case, I sort of agree with you. And, uh, like the fact that there are exceptions made and just things are just brushed off because they're autistic. It's not like the real world doesn't act like that. The real world doesn't care if you are autistic or anything like that, you've got to be able to do things that everyone else can, you know, without, without fail, without flaw, without imperfection. You do that, and it pretty much sets you up for a potential failure.

Q: What are small behaviors “normalized” by society that are harmful towards people on the spectrum?

Owlia: I mean, I can definitely think of one just as a 20-something. I'm not a fan of clubbing. And I think the reason why is that, for example, sensory issues, if it's so loud, the music itself is so loud, you're not going to really enjoy yourself. I remember when I was in Hong Kong, I was at this, uh, I was at this club. I was probably 19 at the time because Hong Kong, legal age is 18. It's completely fine. Um, I had to leave actually a couple of times because the music was so loud. It was so dark. I couldn't see, it was so overwhelming that I had to, I had to leave like a couple of times just to get some air, before going right back in the club. That's why, personally, I love silent discos. If people don't know what that is, it's basically you have this little area set up with all these headphones. You can adjust the volume, you can choose what music you want and you basically just do silent dancing. It looks weird, but it's really, really fun. Like I've, I've done a few silent discos, they're actually really cool.

Q: If an individual with autism applies for a job, are they required to state on a job application or inform a potential employer of their autism?

Edwards: No. It is no one's, it's, it's not required. Um, you're covered under the Americans With Disabilities Act. You do not have to disclose any of that. If you need accommodations, you may need to disclose that eventually, or you can disclose that on the employment application, but you do not need to tell anyone that you are on the spectrum.

Owlia: Yeah. I mean, I'm proud to say that, like when I've got, when I got my internship at Philadelphia Magazine, I said, I openly said, "Hey, listen, I'm on the spectrum, but don't let that impact your decision. I just don't want to be like the diversity hire, nothing like that. If I, if I get the job, I want to be able to do it on skill, not on this one little thing that I have," you know, and I ended up getting it because of my skills, which is good.

Q: What is the best and most sustainable course of action for improvement?

Edwards: Um, things like this, listening to things like this, promoting things like this, getting more involved, but also, you know, in your daily life, just treating everyone, again, with kindness and respect. And I think having patience is, is a big piece of it too. That will take you far.

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