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In this episode, we will tackle contentious topics in the autistic community and talk about why topics such as the puzzle piece symbol, person-first language among others are controversial and hotly debated.
Anticipating Controversy
Show Notes for Embracing Autism Podcast — Ep. 111
Introduction
Lia: In this episode, we will tackle contentious topics in the autistic community and talk about why topics such as the puzzle piece symbol, person-first language, among others are controversial and hotly debated.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.
Lia: I’m Lia!
Matt: And I’m Matt!
Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.
Lia: This is —
Lia & Matt: Embracing Autism!
Discussion
Lia: So disclaimer, I want to start off this episode by letting you guys know that a lot of the topics we’re going to discuss here are hotly debated, they are things that tend to raise the temperature and people really don’t like talking about these, this is kind of a back and forth between the autistic community and the neurotypical parenting community. So there may be topics that we touch in this episode that might push your buttons the wrong way. And I just want to let you know, it’s not our intention to offend anyone or try to make anyone feel lesser or anything like that. We really are just trying to let you guys know what it is that the autistic community has to say about particular topics and just educate the public so that everyone is aware, we are just trying to do this as conscientiously as possible without really meaning to offend anyone. So if we do, my deepest apologies, that is definitely not our intent.
Matt: So in other words, we’re about to send you out into the autism battlefield. And we want to arm you or be aware of where these boundaries and lines are already drawn.
Lia: We don’t want you to step on a landmine. So what we’re doing is giving you the map, and — what’s that saying about don’t shoot the messenger?
Matt: So Best of luck in navigating the minefield.
Lia: So without further ado, I give you all the most contentious, hotly debated, and controversial topics within the autistic community. So I’m just gonna rip the band-aid off right off the bat here and get you guys to all hate me all at once. Because the first topic here is the puzzle piece symbol. I know a lot of autism parents, quote-unquote, are pretty into the puzzle piece symbol, it’s a way to symbolize our affection for our children. A lot of parents out there I’ve seen have autism puzzle piece symbol tattoos and things that I know are well-intentioned. These are symbols that are typically to show your connection to your child and how you’d do anything for your child. And the intent behind them is usually really truly beautiful. There is however very negative connotation to the puzzle piece symbol, which most parents are actually not aware of. So the puzzle piece symbol in the autistic community is actually looked down upon, it’s a contentious topic because autistics tend to not like it because of the Autism Speaks Association. Autism Speaks if you have or have not heard of them, they’re also a big organization dedicated to autism, they do a lot of good stuff too, like offer supports and systems and stuff like that. For parents and autistic individuals, however, there is a lot of controversy as to how they were founded and their original videos, and the way that they used to describe autism. So one of the issues with the puzzle piece symbol itself is the origins of the puzzle piece symbol. So when the puzzle piece symbol was initially chosen by Autism Speaks, which again, that organization’s actually considered a hate group by autistic adults believe it or not, but when the puzzle piece symbol was chosen, the original puzzle piece symbol actually had a crying child on the front of the piece. And the whole point of it was really this dark negative connotation of how autistic children are kind of like missing a piece and that the goal with autism research was to quote “solve the puzzle”. And in that sense, what they were going for was trying to find a way to make autistic individuals “normal”. I’m not using normal in my definition of the word I’m using it in the way that they would have used that so in their words they were trying to create, “normal children through research”. And so as you can imagine, this is extremely offensive to many autistic adults out there who definitely don’t feel like being othered or seen as less than simply because of an autism diagnosis. And of course, the negative connotation with the crying child symbolizing the pain and agony that the child is in because they’re autistic. There’s just a lot of negativity that ended up giving autism a stigma in the earlier days of autism that has carried on with it to this day, and a lot of that has to do with the Autism Speaks organization and the puzzle piece symbol itself.
Matt: Now there is another side on the autistic adults, that there are some that actually embrace the puzzle piece because they see it as being unique that they are a unique puzzle piece as a whole. But most of the autistic adults tend to disagree with this and see it as a negative.
Lia: I will also add, there are some autistic adults who view the puzzle piece, like he said, in a more positive light. But the reason that they do it is also because they are all about taking back the puzzle piece and taking back that symbolism to kind of redefine it and give it a new vision. That’s kind of in the works right now; the autism community goes back and forth with this. But I would say overall, the general consensus is in fact that the puzzle piece is offensive. If you go and talk to any autistic adults out there in the community, which again, I urge you to do, and just have a conversation with them, whether online or in-person, you’ll probably get a better understanding of how they feel about this and why but it definitely is one of these triggers that will really hurt someone pretty quickly. So I would be conscious of that. And also, if you are using the puzzle piece to represent your child, I would just be aware of how it might be interpreted by other autistic adults before you make some sort of potential permanent decision.
Matt: And there are also other symbols that are used for the autism community. I believe one of the main ones that we’ve seen is the infinity sign up if I’m remembering that correctly.
Lia: The infinity symbol, generally speaking, represents the entire neurodiversity community, autistics will accept both the general neurodiversity symbol, which is an infinity rainbow-colored symbol, or they have also more recently come up with their own version of the infinity symbol that represents autism specifically, and that is the golden infinity symbol. And the reason they picked the golden infinity symbol is because the abbreviation for gold in the periodic table of elements is AU. And of course, au is the beginning of the word autistic. So that is what is considered to be the more acceptable symbol for autism. That is the one that I personally choose to use. Now, the rest is really up to you. But I just let you know that you may or may not run into some conflict or controversy, if you do choose to use the puzzle piece symbol, just be aware of that.
Matt: And it’s always better to know what’s out there. So you’re not caught off guard that if someone does come to you, and they are upset with the puzzle piece not to be completely caught off guard that there is another side to the puzzle piece itself. So just be aware of other meanings that it might have, it might not only be the meaning that you are wanting it to have.
Lia: Sometimes it’s hard for us to take into consideration another person’s perception of the symbol that means so much to us and it’s hard to see something that we view so positively means something negative to someone else. But it’s important to kind of step back from our own emotions sometimes and just try to open up to what the other person is trying to say in this case, the autistic community that is hurt by the symbol and just try to understand the reason why behind that before jumping to any conclusions. So that’s really all I’m saying is just be open to the idea of discussing that and understanding that before going ahead with it.
Lia: So as I mentioned before, the puzzle piece symbol was associated with Autism Speaks and I briefly mentioned that the autistic community sees Autism Speaks as a hate group. There’s a lot of reasons why I again, would urge you guys to do some research on this because I simply can’t fit it all on this podcast episode. But to put very briefly some of the things that Autism Speaks has done in addition to the puzzle piece symbol with a crying child is they’ve run some commercials and some ads and some documentaries that are really demeaning and degrading to autistic individuals. One of the commercials that we saw — I showed it to you Matt.
Matt: Right, it was a little dark, it kind of almost described autism as being essentially like a demon that you’re not able to see from the normal eye. But it basically infiltrates your family and will basically deteriorate the fabric of your family. And it just left a very like negative almost demonic image of autism. It was very weird indeed to watch the video.
Lia: It completely felt evil, like it was like a sinister take on autism and it was like — autism, it sneaks up on your child and it ruins your marriages and it makes you depressed and it puts you into financial ruin, autism.
Matt: And it was basically saying that there’s nothing research can do. There’s nothing anyone can do to can help. It’s basically like setting up for a like horror movie of doom —
Lia: It was crazy like that those ads if you just go on YouTube and type in Autism Speaks controversial ads, and you will see how crazy some of these are. I mean, they really make it seem like a child who’s autistic is literally a demon-possessed kid who’s going to come and destroy your life.
Matt: I will add in at the end of the video they do try to, in my opinion, salvage where they try and spin it back to trying to make it a little less… yeah; But I feel like with the negative image that they started —
Lia: It was a train wreck.
Lia: So that was one of them. Another very controversial well-known ad was one of the executives that’s part of the Autism Speaks. I don’t know if it was a board, but they are part of the committee in Autism Speaks. They were in a mini-documentary as well. And in this documentary, they were talking about their child who was autistic. And this child was in the room with this parent while she was talking about her child and her experience with autism. And the thing that really shocked everyone was that in this interview, she talks about how when she was raising her child, that she went through such stress and turmoil that she actually contemplated taking her child putting her in her car and driving off of a bridge killing herself and her child simply because her child was autistic. And the thing that I thought was most shocking of that video was that when she said that the only thing that stopped her from doing it was when she thought about her other neurotypical child and, and what would happen to her, I was personally really offended by that video because she essentially was saying, it’s totally cool for me to kill my autistic child, but the only thing keeping me alive was my neurotypical child.
Matt: Right, and I think that just speaks a little bit to the video as well that I mean, if you have a video basically saying how horrible Autism is. And then basically, you have an executive member of the community basically saying that she contemplated suicide by killing her daughter as well and the only reason she didn’t do it was because she had a neurotypical daughter at home that she would be abandoning. It really doesn’t shed a positive light on that image, to say the least.
Lia: Needless to say Autism Speaks is not looked highly upon in the autistic community because of these things among other things. They have other programs that they do like they do the light it up blue and the teal pumpkin program, which is supposed to be about spreading awareness of autism. Generally speaking, there’s nothing wrong with those things themselves. There’s nothing wrong or controversial about having the teal, pumpkin or lighting it up blue. But the reason the autistic community is against it is because those programs were made by Autism Speaks, which they consider a hate group. So just by default, they don’t like that, because it’s kind of like a subsidiary of Autism Speaks.
Matt: Right. And I don’t think that they serve the purpose that they’re intended for as well. Because if I saw a child trick or treating with a teal pumpkin, I wouldn’t necessarily think oh, that child is autistic. I mean, unless you actually do the research and know that that’s a situation you would have no idea you just think that it’s a off-colored pumpkin that someone’s trick or treating with.
Lia: Right, you’re better off either talking directly with a parent or giving them some sort of note or something like that, to let them know, hey, my kids nonverbal, they may not actually be able to request candy or say Trick or Treat. So having that conversation is probably more effective than the teal pumpkin anyway, because most people don’t even know what the teal pumpkin represents.
Lia: So moving on to the next controversial topic, this is another one, you guys will probably hate me.
Matt: They are going to hate both of us.
Lia: I know we’re gonna be so hated after this episode. So this is the whole idea of autism mom and autism dad. And I will say I have been guilty of this one before I’ve done it multiple times, referring to yourself as an autism mom, or an autism dad and going around and kind of using autism as an accessory or a trophy or something like that, to not really like show off, but kind of what’s the word I’m looking for —
Matt: I would say it kind of lets you tell others that you have a struggle that might be greater than theirs for example.
Lia: It’s kind of in the realm of attention-seeking, although it’s not necessarily done consciously. It’s kind of like a subconscious thing that we might do accidentally, but particularly what the autistic community doesn’t like is the language of the phrasing of autism mom and autism dad. And the reason they don’t like that is because, using the phrase autism mom kind of implies that the mom has autism or is autistic whereas saying I’m a mom of an autistic child then puts that attention on the child rather than the mom. Once we use the language of autism mom or autism dad, we’re taking the focus of autism away from our child and putting it onto ourselves. So it kind of shifts the balance of power, the balance of attention more to the parent than the child and that tends to rub the autistic community the wrong way because it’s kind of like taking the focus away from what’s really important and making it more about us.
Matt: Right I can see two different ideas of thought on this one, the one being that almost trying to seek out as far as a group of other parents who have autistic children as well to kind of say like, okay, like we understand your struggles like we know what a meltdown actually is. We know what you go through on a typical day-to-day, so there’s that one vision of kind of the autism mom or dad, but then there’s also the element of others using it as a almost, I don’t wanna say riding the coattails of your child a little bit to kind of get brownie points a little bit, too.
Lia: I’m hoping that none of my listeners fall under that category. I’m sure you all are the best of the best and you guys would never do that. So I am totally totally, totally psyched for my listeners.
Matt: But I mean, it has the two different views. And I guess it depends on how you yourself are trying to use that terminology.
Lia: Right. And I mean, we know that this happens with regular parenting, it doesn’t have to be autism parenting, like, you know, there’s always that one mom that is kind of showing off about her kid being the great wrestling champion. And you know that that mom doesn’t have the best relationship with that kid, but she likes to go around talking about how great of a champion he is at wrestling, it’s kind of the same principle. So it doesn’t obviously apply to all moms. Most moms are great. But for the few that the autistic community is able to see on Facebook, where they are kind of doing that riding on the coattails of autism thing, they find it really offensive. And I can understand why I would not want people riding on the coattails of my disability to prop themselves up either.
Matt: That’s true. My parents never took advantage of me.
Lia: Yeah, did we mention we’re both neurodiverse? Yeah. So we know a little bit about that. I know, I personally would be pretty offended if my parents went around doing that about my stuff.
Matt: I agree.
Lia: Yeah. So I get that one. And I know it’s not the best thing to hear. But you know, I figured I’d put it out there.
Matt: I think the big thing is mostly just to be aware of it, though. Yes. Like you mentioned, I’m probably guilty of it too. If I’m talking to my friends or something, I might let something slip. But I think just being aware of it, I think makes a big difference. Because then you can kind of catch yourself be like Oh, what is the real purpose of me actually disclosing this.
Lia: And along those lines now that we’re talking about autism mom, autism dad and the contentious part of that being the riding on the coattails and such something that’s kind of similar to that and is also hotly debated is the idea of what’s called inspiration porn, and no, it’s not actually related to porn. So settle down —
Matt: Rated R or X or whatever.
Lia: So what inspiration porn is, is it’s basically what the autistic community uses to refer to when magazines or newspapers or articles put up headlines, this amazing feat that was done by this autistic person. And the reason that they find that offensive is because the feat is not highlighted as amazing in itself. It’s the fact that an autistic person did it that’s considered amazing, which they find kind of degrading because the focus is put on the person’s disability rather than the person’s accomplishment. And one of the examples that was given to me early on was there was this kid who was put on the front cover of a magazine because he was autistic and he was able to make like a life size replica of it wasn’t a titanic, but it was like a steamboat made out of Legos.
Matt: There was one that was the Titanic, not life-size.
Lia: Not a life-size, like a miniature but you know, it was pretty big as it’s the size of the shed or something like that. And this was really, really not well received at all within the autistic community. Because what happened is the newspaper or magazine printed it as look at what this autistic kid achieved, can you believe somebody with autism was able to do something as amazing as this? And at first, that seems really innocent. But if you think about it, and just re-listen to what I just said, it is pretty offensive to say, Can you believe what this autistic person was able to achieve? Like, why is the autism important when the achievement would have been amazing even if a neurotypical person did it?
Matt: Well I was going to say because you have Lego World, right? So even if you had a team of professional Lego makers, making a Titanic of this magnitude, it would still be impressive. I mean, even regardless of age, how many people work on it, it would still be an impressive sight to see. So therefore a kid doing it is phenomenal. But I think you’re right with labeling it as autistic kid I feel like—
Lia: it’s unnecessary
Matt: Right? Absolutely.
Lia: And so that is what they call inspiration porn, because the reason they call it that is because it appears to be that the reason that phrasing is put in there — the reason the term Autism is put in there — is because you’re essentially telling the neurotypical audience, if an autistic kid can do it, you definitely should be able to do something like this. So it inspires the neurotypical audience to want to accomplish similar goals. So it’s kind of using autistic people as a prop to get that and at the same time, it’s essentially belittling them.
Matt: It’s basically setting the bar. It basically says like oh, an autistic child was able to create this crazy, massive boat from Legos. This is the bare minimum because if you’re neurotypical, you should easily be able to do it. Right. So, I mean, it just sounds terrible to think that Oh, just because I’m autistic, I’m basically the bar that is being set. So everyone should be aiming above that bar — it just seems like crazy.
Lia: It’s pretty offensive.
Matt: Exactly.
Lia: So just keep that in mind. And that’s one of the things that again, is pretty controversial and pretty frustrating with the autistic adults, it doesn’t end there. We’ve there’s gonna be a long episode just hold tight, because we really think it’s important that you know these things just again, so you can avoid these landmines and avoid making any of these mistakes.
Lia: So the next one on our list is another controversial one, because a lot of parents like to do this. And this is putting up signs or stickers that call your child out as autistic. This might be for example, putting a sign or requesting a sign to be placed up in your neighborhood that says something like Slow down, slow down autistic child, or something like that, or the stickers that are put on the back of your cars that say something like autistic child on board or something like that. Now, obviously, these things are done with well intent. Obviously, these things are done to protect our children, they’re things like, Okay, I need to put the sign here because people need to slow down because my child does not regard traffic and he’ll run into traffic and cars need to slow down. That totally makes sense. Same with the stickers on the cars, it makes sense that you want to put a warning in case an emergency happens, and they need to break into your car and your kid’s nonverbal, that totally makes sense.
Matt: Right, and I think the big thing is, I’m coming at this from more of a safety concern. If you’re putting a sticker on the back of your car saying autistic child on board, you’re letting every person every creep, every everyone out there, letting them know that you have a child on board that if they are kidnapped, or anything along the lines, they won’t respond like a neurotypical kid. So they might not scream, you might just take their hand and they might just walk off with you. Or they might just as soon as the doors open in the car, they might just run off as is. So I think I’m seeing it more as a protective parent where I would be terrified of someone tracking me based on something that I put on the back of my car that they know oh, there’s an autistic child in there.
Lia: Right. So you kind of have to weigh the pros and cons. We already mentioned the pros of you know, helping with awareness and getting your child the help that they need should an emergency come up or safety. But the negative sides to that is, like Matt mentioned, the safety issues of potentially inadvertently putting a target on your child’s back. One of those things with a bumper sticker is a lot of the ones that I have seen are extremely detailed. And I’ve seen parents put these up and they put pictures of them on Facebook. And I just cringe because they say things specifically like not just autistic child on board, they’ll say autistic child on board and then on top of that, they’ll say child will not be able to respond child will not be able to communicate my child might run and like it basically lays out in fine detail all the things your kids —
Matt: A checklist for a kidnapper of perfect I don’t have to worry about any of these things. Now, I will say that I did see through some of the ads that there is for emergency personnel, there is a way to say that your child is autistic. So I think of the seat belt straps, I’m not really sure —
Lia: They have this thing that you could put on your seat belt that’s like a Velcro cushion that you kind of wrap around the strap. I think it’s supposed to be like a neck protector or like a chest protector.
Matt: And on there. It basically says I am autistic, I may resist if you’re trying to help me essentially. So if you are in a car accident, and you’re unconscious, and you have emergency personnel trying to get everyone out of the vehicle, they will be able to see the strap and right where the situation.
Lia: So it serves the same purpose, but it’s more private because it’s inside of your vehicle. And if you really feel like you need the sticker, like I know some kids won’t stay in the car, see, or they’re strapped and they might pull it off, or they might take it off and that might not work for you. So you could use the same sticker that you would use on a bumper sticker and simply put that inside your vehicle somewhere maybe on the inside of the window or on their door or something like that.
Matt: Back of the seat or something along those lines.
Lia: Right. So that’s one of those things that people tend to not want to let it go because people really like putting stuff on their cars like it’s part of our identity. Sometimes a car can be an extension of us. That’s why bumper stickers are so popular. But I really urge people to reconsider that just because of the safety issues you don’t really want to attract.
Matt: Well it’s also funny that you mentioned that that’s a part of my identity because we also see as far as social media kind of similarly linked with people displaying information about their autistic children as well. So I mean that is also partly linked to their identity as well where people have no problem basically sharing their child’s diagnosis to hundreds of people.
Lia: Yeah. So that’s actually another one of these topics. And that is publicly disclosing the diagnosis. Actually, this is something that I have spoken to autistic adults about. And it goes along with posting videos of negative behavior from your child. So things like meltdowns and stuff like that the autistic community is really upset with the fact that a lot of parents will publicly post not just the diagnosis, but evidence of your child when they are having a meltdown or sensory overload or something else that is considered, “undesirable”, and sharing it with the world. And there’s a couple of reasons why. One of them is publicly disclosing the diagnosis takes away the child’s ability to consent to that. And I know that for me personally, as a neurodiverse individual myself, I would have been mortified if my parents went around telling everybody about my diagnosis.
Matt: Thank goodness, Facebook wasn’t around when we were younger?
Lia: Yes, thank goodness. Because I know for me, I would have been really embarrassed. And I definitely would not have liked that. Sometimes parents don’t take that into consideration because the children are really young, or they’re nonverbal. Or sometimes we think that they don’t understand as much as they really do. And then we find out later that actually know more than we think.
Matt: And I think the other thing as far as posting a video of a meltdown, if you think about how would you like it if your parent were to post the most embarrassing thing of your childhood.
Lia: For the whole world.
Matt: Right? If Okay, if you’re a two or three year old, and you have a bathroom issue at the mall, and you happen to pee your pants or something, and you’re getting embarrassed about peeing your pants or something in public, I mean, it’s not flattering for anyone.
Lia: And it’s forever, right? It’s up forever.
Matt: Right and it doesn’t serve a purpose to anyone. It’s just showing the struggles that the child is going through without any disregard for how the child is actually feeling at that time, it’s completely pushing it aside.
Lia: And again, these are things that people don’t consider because our children are younger unless you’re posted these have older children, which is possible too. But if those videos do get tracked down, it makes her kid a prime target for bullying in the future. Bullies have started to mine Facebook for embarrassing videos from people that they will then use to either blackmail those students or they’ll use it to bully them further and spread it and make viral video on Facebook. It’s very easy for somebody to be able to do something like that and although they might not be in school for a couple years down the road. There have been several cases of people holding on to videos for a couple of years before they decide to use them on people so I wouldn’t put it past them and that’s just something that I personally have decided against doing is uploading any of those videos.
Matt: Right, so just ask you all just to think twice before you actually take a video or post a video online just what is the real purpose that you’re going for with this video? What is the intended purpose who is it intended for and just ask yourself if it is really absolutely necessary to take the video in the first place?
Lia: Alright guys, we’re almost done whacking you guys with a baseball bat, we only got one more of these to go. Hold on till the very last one that we got here for you guys is the idea of person-first language probably have heard this from any parenting, I guess they’re called parent training sessions that you’ve done through any sort of Autism Center or through in infants and toddlers program or your public school system. So to cut to the chase, the issue here is person-first language. Just when you are referring to a person before the autism so instead of saying autistic, it’s a person with autism. So instead of saying “My child is autistic”, a lot of professionals in the field — doctors, physicians, clinics, parent support groups — will say that the appropriate and polite thing to do is to refer to that autistic child as with autism. So you would say, “Oh, yeah, my child has autism”. You wouldn’t say “my child is autistic”. However, you may be surprised to know that the autistic community actually finds that offensive and prefers autistic. So they actually go against what most of the professionals will say they do not like person-first language, which is saying again, a person with autism they actually prefer to be referred to as autistic. And the reason why is because the implication of person-first language is that autism is more like an accessory like a purse that you can set down because it’s a person with the purse. It’s a person with autism, and many autistic adults view themselves as having autism be part of their identity and who they are that something that is inseparable from their very being. And because it’s inseparable, they define themselves as autistic. I am autistic. I cannot put my autism down and put it aside like I would an accessory. I’m not walking around with autism. I am autistic.
Matt: And I suppose I’m an offender of this type of language because I’m not even sure how to actually describe my daughter’s autism. It sounds terrible, but I’m not sure if I’m going to be crucified by the medical professionals or by the autistic adults. So I’m not even sure how to describe it, to tell you the truth. And I mean, I think for me, because I mean, I have disabilities, I don’t think that the disability defines who I am as a person. So I guess I’m not even sure which would be right. I’m not sure where I would actually fall into this argument myself, which might be the problem, because then it looks like I’m gonna be shot by both sides anyways. So I don’t know how you win here.
Lia: Yeah, so I honestly, I don’t play the game, I don’t really care about winning. To me, it’s more about just respecting the person that you’re talking to specifically. So the best kind of call to action here is if you are around an autistic adult, simply ask them what their preferences? Do they prefer to be called autistic? Or do they prefer the with autism person-first language.
Matt: Or their name?
Lia: Or their name? Yeah, I know, right. But when it comes to your own children, I think that that for us is going to be a decision that we’re ultimately going to leave up to them once they’re old enough to make that decision. And until then, we’re kind of just going back and forth between the two. I personally, I think you guys probably have noticed by now through this podcast, I personally use autistic a lot more, because I do know that is what the autistic community prefers and it just makes sense to me. It’s also shorter.
Matt: I mean, as far as when you’re just having a conversation with someone. It’s easier, right? I mean, I hate to admit that, because it’s easier we use it.
Lia: easier to say autistic than person with autism. And that just sounds weird to me, I’m sorry. But it does, I do kind of refer and self-reflect a little bit to my own neurodiversity. Because I have a couple of different things. I told you guys, I have ADHD, I have a few other things as well. And at no point in time have I really sat and cared much about how people refer to me, I don’t really care if they say I am ADD or ADHD versus I have ADD or ADHD. For me, they are kind of like, I can use either of them. And it doesn’t really bother me. And I know that there’s autistic adults out there as well, who will go between the two. So I think the best rule of thumb here is just ask the person and then when it comes to your own child, maybe go between the two or defer to autistic until they’re old enough to kind of let you know what they prefer. But I just wanted to give you guys you know, word to the wise out on the streets, it is considered offensive to say person-first language, you are better off saying autistic.
Matt: So hopefully this helped you navigate the waters a little bit better. And hopefully, you hadn’t made too many enemies in the process. And hopefully, we’re not a couple of those enemies as well.
Lia: Yeah, I think we set off enough mines in this episode to leave you guys with a few resources to help you out. We’re going to end this podcast. But before we do, I’m just going to let you guys know there’s a couple of autistic adults that you should probably follow. To get a better idea of what we’ve been talking about in this episode, you can follow a series on YouTube that’s called Yo Sammdy Sam, that’s yo s a m d y Sam. This is an autistic adult who goes through a lot of this stuff. So you’ll get her perspective. There’s another series that’s called Ask an Autistic that is also on YouTube. So you can go ahead subscribe to that channel if you’d like but that that person will give you some insight on their experience as well. And then to give you the flip side of it — because those tend to be a little more on one side of the argument — this is the flip side of the argument; another autistic adult you can listen to or read up on her blog is The Autism Cafe that is a Facebook group as well as a website and blog and that person is the one who’s more on the pro ABA pro puzzle piece side. The other two are more against but that way you kind of see both sides of the issue. And that’s all we have for you guys today.
Outro
Lia: Thanks for listening to embracing autism. Join us next time as we wrap up season one with our final thoughts, give our best tips on how to go from here and words of encouragement to help you continue on this journey. This is Embracing Autism.
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Resources
The Autism Cafe
Yo Samdy Sam – Autism, neurodiversity and exploring the autistic experience
The Autism Puzzle Piece: A Debated Topic
Boy with Autism Builds World’s Largest LEGO Titanic Replica
Show Notes for Embracing Autism Podcast — Ep. 111
Introduction
Lia: In this episode, we will tackle contentious topics in the autistic community and talk about why topics such as the puzzle piece symbol, person-first language, among others are controversial and hotly debated.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.
Lia: I’m Lia!
Matt: And I’m Matt!
Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.
Lia: This is —
Lia & Matt: Embracing Autism!
Discussion
Lia: So disclaimer, I want to start off this episode by letting you guys know that a lot of the topics we’re going to discuss here are hotly debated, they are things that tend to raise the temperature and people really don’t like talking about these, this is kind of a back and forth between the autistic community and the neurotypical parenting community. So there may be topics that we touch in this episode that might push your buttons the wrong way. And I just want to let you know, it’s not our intention to offend anyone or try to make anyone feel lesser or anything like that. We really are just trying to let you guys know what it is that the autistic community has to say about particular topics and just educate the public so that everyone is aware, we are just trying to do this as conscientiously as possible without really meaning to offend anyone. So if we do, my deepest apologies, that is definitely not our intent.
Matt: So in other words, we’re about to send you out into the autism battlefield. And we want to arm you or be aware of where these boundaries and lines are already drawn.
Lia: We don’t want you to step on a landmine. So what we’re doing is giving you the map, and — what’s that saying about don’t shoot the messenger?
Matt: So Best of luck in navigating the minefield.
Lia: So without further ado, I give you all the most contentious, hotly debated, and controversial topics within the autistic community. So I’m just gonna rip the band-aid off right off the bat here and get you guys to all hate me all at once. Because the first topic here is the puzzle piece symbol. I know a lot of autism parents, quote-unquote, are pretty into the puzzle piece symbol, it’s a way to symbolize our affection for our children. A lot of parents out there I’ve seen have autism puzzle piece symbol tattoos and things that I know are well-intentioned. These are symbols that are typically to show your connection to your child and how you’d do anything for your child. And the intent behind them is usually really truly beautiful. There is however very negative connotation to the puzzle piece symbol, which most parents are actually not aware of. So the puzzle piece symbol in the autistic community is actually looked down upon, it’s a contentious topic because autistics tend to not like it because of the Autism Speaks Association. Autism Speaks if you have or have not heard of them, they’re also a big organization dedicated to autism, they do a lot of good stuff too, like offer supports and systems and stuff like that. For parents and autistic individuals, however, there is a lot of controversy as to how they were founded and their original videos, and the way that they used to describe autism. So one of the issues with the puzzle piece symbol itself is the origins of the puzzle piece symbol. So when the puzzle piece symbol was initially chosen by Autism Speaks, which again, that organization’s actually considered a hate group by autistic adults believe it or not, but when the puzzle piece symbol was chosen, the original puzzle piece symbol actually had a crying child on the front of the piece. And the whole point of it was really this dark negative connotation of how autistic children are kind of like missing a piece and that the goal with autism research was to quote “solve the puzzle”. And in that sense, what they were going for was trying to find a way to make autistic individuals “normal”. I’m not using normal in my definition of the word I’m using it in the way that they would have used that so in their words they were trying to create, “normal children through research”. And so as you can imagine, this is extremely offensive to many autistic adults out there who definitely don’t feel like being othered or seen as less than simply because of an autism diagnosis. And of course, the negative connotation with the crying child symbolizing the pain and agony that the child is in because they’re autistic. There’s just a lot of negativity that ended up giving autism a stigma in the earlier days of autism that has carried on with it to this day, and a lot of that has to do with the Autism Speaks organization and the puzzle piece symbol itself.
Matt: Now there is another side on the autistic adults, that there are some that actually embrace the puzzle piece because they see it as being unique that they are a unique puzzle piece as a whole. But most of the autistic adults tend to disagree with this and see it as a negative.
Lia: I will also add, there are some autistic adults who view the puzzle piece, like he said, in a more positive light. But the reason that they do it is also because they are all about taking back the puzzle piece and taking back that symbolism to kind of redefine it and give it a new vision. That’s kind of in the works right now; the autism community goes back and forth with this. But I would say overall, the general consensus is in fact that the puzzle piece is offensive. If you go and talk to any autistic adults out there in the community, which again, I urge you to do, and just have a conversation with them, whether online or in-person, you’ll probably get a better understanding of how they feel about this and why but it definitely is one of these triggers that will really hurt someone pretty quickly. So I would be conscious of that. And also, if you are using the puzzle piece to represent your child, I would just be aware of how it might be interpreted by other autistic adults before you make some sort of potential permanent decision.
Matt: And there are also other symbols that are used for the autism community. I believe one of the main ones that we’ve seen is the infinity sign up if I’m remembering that correctly.
Lia: The infinity symbol, generally speaking, represents the entire neurodiversity community, autistics will accept both the general neurodiversity symbol, which is an infinity rainbow-colored symbol, or they have also more recently come up with their own version of the infinity symbol that represents autism specifically, and that is the golden infinity symbol. And the reason they picked the golden infinity symbol is because the abbreviation for gold in the periodic table of elements is AU. And of course, au is the beginning of the word autistic. So that is what is considered to be the more acceptable symbol for autism. That is the one that I personally choose to use. Now, the rest is really up to you. But I just let you know that you may or may not run into some conflict or controversy, if you do choose to use the puzzle piece symbol, just be aware of that.
Matt: And it’s always better to know what’s out there. So you’re not caught off guard that if someone does come to you, and they are upset with the puzzle piece not to be completely caught off guard that there is another side to the puzzle piece itself. So just be aware of other meanings that it might have, it might not only be the meaning that you are wanting it to have.
Lia: Sometimes it’s hard for us to take into consideration another person’s perception of the symbol that means so much to us and it’s hard to see something that we view so positively means something negative to someone else. But it’s important to kind of step back from our own emotions sometimes and just try to open up to what the other person is trying to say in this case, the autistic community that is hurt by the symbol and just try to understand the reason why behind that before jumping to any conclusions. So that’s really all I’m saying is just be open to the idea of discussing that and understanding that before going ahead with it.
Lia: So as I mentioned before, the puzzle piece symbol was associated with Autism Speaks and I briefly mentioned that the autistic community sees Autism Speaks as a hate group. There’s a lot of reasons why I again, would urge you guys to do some research on this because I simply can’t fit it all on this podcast episode. But to put very briefly some of the things that Autism Speaks has done in addition to the puzzle piece symbol with a crying child is they’ve run some commercials and some ads and some documentaries that are really demeaning and degrading to autistic individuals. One of the commercials that we saw — I showed it to you Matt.
Matt: Right, it was a little dark, it kind of almost described autism as being essentially like a demon that you’re not able to see from the normal eye. But it basically infiltrates your family and will basically deteriorate the fabric of your family. And it just left a very like negative almost demonic image of autism. It was very weird indeed to watch the video.
Lia: It completely felt evil, like it was like a sinister take on autism and it was like — autism, it sneaks up on your child and it ruins your marriages and it makes you depressed and it puts you into financial ruin, autism.
Matt: And it was basically saying that there’s nothing research can do. There’s nothing anyone can do to can help. It’s basically like setting up for a like horror movie of doom —
Lia: It was crazy like that those ads if you just go on YouTube and type in Autism Speaks controversial ads, and you will see how crazy some of these are. I mean, they really make it seem like a child who’s autistic is literally a demon-possessed kid who’s going to come and destroy your life.
Matt: I will add in at the end of the video they do try to, in my opinion, salvage where they try and spin it back to trying to make it a little less… yeah; But I feel like with the negative image that they started —
Lia: It was a train wreck.
Lia: So that was one of them. Another very controversial well-known ad was one of the executives that’s part of the Autism Speaks. I don’t know if it was a board, but they are part of the committee in Autism Speaks. They were in a mini-documentary as well. And in this documentary, they were talking about their child who was autistic. And this child was in the room with this parent while she was talking about her child and her experience with autism. And the thing that really shocked everyone was that in this interview, she talks about how when she was raising her child, that she went through such stress and turmoil that she actually contemplated taking her child putting her in her car and driving off of a bridge killing herself and her child simply because her child was autistic. And the thing that I thought was most shocking of that video was that when she said that the only thing that stopped her from doing it was when she thought about her other neurotypical child and, and what would happen to her, I was personally really offended by that video because she essentially was saying, it’s totally cool for me to kill my autistic child, but the only thing keeping me alive was my neurotypical child.
Matt: Right, and I think that just speaks a little bit to the video as well that I mean, if you have a video basically saying how horrible Autism is. And then basically, you have an executive member of the community basically saying that she contemplated suicide by killing her daughter as well and the only reason she didn’t do it was because she had a neurotypical daughter at home that she would be abandoning. It really doesn’t shed a positive light on that image, to say the least.
Lia: Needless to say Autism Speaks is not looked highly upon in the autistic community because of these things among other things. They have other programs that they do like they do the light it up blue and the teal pumpkin program, which is supposed to be about spreading awareness of autism. Generally speaking, there’s nothing wrong with those things themselves. There’s nothing wrong or controversial about having the teal, pumpkin or lighting it up blue. But the reason the autistic community is against it is because those programs were made by Autism Speaks, which they consider a hate group. So just by default, they don’t like that, because it’s kind of like a subsidiary of Autism Speaks.
Matt: Right. And I don’t think that they serve the purpose that they’re intended for as well. Because if I saw a child trick or treating with a teal pumpkin, I wouldn’t necessarily think oh, that child is autistic. I mean, unless you actually do the research and know that that’s a situation you would have no idea you just think that it’s a off-colored pumpkin that someone’s trick or treating with.
Lia: Right, you’re better off either talking directly with a parent or giving them some sort of note or something like that, to let them know, hey, my kids nonverbal, they may not actually be able to request candy or say Trick or Treat. So having that conversation is probably more effective than the teal pumpkin anyway, because most people don’t even know what the teal pumpkin represents.
Lia: So moving on to the next controversial topic, this is another one, you guys will probably hate me.
Matt: They are going to hate both of us.
Lia: I know we’re gonna be so hated after this episode. So this is the whole idea of autism mom and autism dad. And I will say I have been guilty of this one before I’ve done it multiple times, referring to yourself as an autism mom, or an autism dad and going around and kind of using autism as an accessory or a trophy or something like that, to not really like show off, but kind of what’s the word I’m looking for —
Matt: I would say it kind of lets you tell others that you have a struggle that might be greater than theirs for example.
Lia: It’s kind of in the realm of attention-seeking, although it’s not necessarily done consciously. It’s kind of like a subconscious thing that we might do accidentally, but particularly what the autistic community doesn’t like is the language of the phrasing of autism mom and autism dad. And the reason they don’t like that is because, using the phrase autism mom kind of implies that the mom has autism or is autistic whereas saying I’m a mom of an autistic child then puts that attention on the child rather than the mom. Once we use the language of autism mom or autism dad, we’re taking the focus of autism away from our child and putting it onto ourselves. So it kind of shifts the balance of power, the balance of attention more to the parent than the child and that tends to rub the autistic community the wrong way because it’s kind of like taking the focus away from what’s really important and making it more about us.
Matt: Right I can see two different ideas of thought on this one, the one being that almost trying to seek out as far as a group of other parents who have autistic children as well to kind of say like, okay, like we understand your struggles like we know what a meltdown actually is. We know what you go through on a typical day-to-day, so there’s that one vision of kind of the autism mom or dad, but then there’s also the element of others using it as a almost, I don’t wanna say riding the coattails of your child a little bit to kind of get brownie points a little bit, too.
Lia: I’m hoping that none of my listeners fall under that category. I’m sure you all are the best of the best and you guys would never do that. So I am totally totally, totally psyched for my listeners.
Matt: But I mean, it has the two different views. And I guess it depends on how you yourself are trying to use that terminology.
Lia: Right. And I mean, we know that this happens with regular parenting, it doesn’t have to be autism parenting, like, you know, there’s always that one mom that is kind of showing off about her kid being the great wrestling champion. And you know that that mom doesn’t have the best relationship with that kid, but she likes to go around talking about how great of a champion he is at wrestling, it’s kind of the same principle. So it doesn’t obviously apply to all moms. Most moms are great. But for the few that the autistic community is able to see on Facebook, where they are kind of doing that riding on the coattails of autism thing, they find it really offensive. And I can understand why I would not want people riding on the coattails of my disability to prop themselves up either.
Matt: That’s true. My parents never took advantage of me.
Lia: Yeah, did we mention we’re both neurodiverse? Yeah. So we know a little bit about that. I know, I personally would be pretty offended if my parents went around doing that about my stuff.
Matt: I agree.
Lia: Yeah. So I get that one. And I know it’s not the best thing to hear. But you know, I figured I’d put it out there.
Matt: I think the big thing is mostly just to be aware of it, though. Yes. Like you mentioned, I’m probably guilty of it too. If I’m talking to my friends or something, I might let something slip. But I think just being aware of it, I think makes a big difference. Because then you can kind of catch yourself be like Oh, what is the real purpose of me actually disclosing this.
Lia: And along those lines now that we’re talking about autism mom, autism dad and the contentious part of that being the riding on the coattails and such something that’s kind of similar to that and is also hotly debated is the idea of what’s called inspiration porn, and no, it’s not actually related to porn. So settle down —
Matt: Rated R or X or whatever.
Lia: So what inspiration porn is, is it’s basically what the autistic community uses to refer to when magazines or newspapers or articles put up headlines, this amazing feat that was done by this autistic person. And the reason that they find that offensive is because the feat is not highlighted as amazing in itself. It’s the fact that an autistic person did it that’s considered amazing, which they find kind of degrading because the focus is put on the person’s disability rather than the person’s accomplishment. And one of the examples that was given to me early on was there was this kid who was put on the front cover of a magazine because he was autistic and he was able to make like a life size replica of it wasn’t a titanic, but it was like a steamboat made out of Legos.
Matt: There was one that was the Titanic, not life-size.
Lia: Not a life-size, like a miniature but you know, it was pretty big as it’s the size of the shed or something like that. And this was really, really not well received at all within the autistic community. Because what happened is the newspaper or magazine printed it as look at what this autistic kid achieved, can you believe somebody with autism was able to do something as amazing as this? And at first, that seems really innocent. But if you think about it, and just re-listen to what I just said, it is pretty offensive to say, Can you believe what this autistic person was able to achieve? Like, why is the autism important when the achievement would have been amazing even if a neurotypical person did it?
Matt: Well I was going to say because you have Lego World, right? So even if you had a team of professional Lego makers, making a Titanic of this magnitude, it would still be impressive. I mean, even regardless of age, how many people work on it, it would still be an impressive sight to see. So therefore a kid doing it is phenomenal. But I think you’re right with labeling it as autistic kid I feel like—
Lia: it’s unnecessary
Matt: Right? Absolutely.
Lia: And so that is what they call inspiration porn, because the reason they call it that is because it appears to be that the reason that phrasing is put in there — the reason the term Autism is put in there — is because you’re essentially telling the neurotypical audience, if an autistic kid can do it, you definitely should be able to do something like this. So it inspires the neurotypical audience to want to accomplish similar goals. So it’s kind of using autistic people as a prop to get that and at the same time, it’s essentially belittling them.
Matt: It’s basically setting the bar. It basically says like oh, an autistic child was able to create this crazy, massive boat from Legos. This is the bare minimum because if you’re neurotypical, you should easily be able to do it. Right. So, I mean, it just sounds terrible to think that Oh, just because I’m autistic, I’m basically the bar that is being set. So everyone should be aiming above that bar — it just seems like crazy.
Lia: It’s pretty offensive.
Matt: Exactly.
Lia: So just keep that in mind. And that’s one of the things that again, is pretty controversial and pretty frustrating with the autistic adults, it doesn’t end there. We’ve there’s gonna be a long episode just hold tight, because we really think it’s important that you know these things just again, so you can avoid these landmines and avoid making any of these mistakes.
Lia: So the next one on our list is another controversial one, because a lot of parents like to do this. And this is putting up signs or stickers that call your child out as autistic. This might be for example, putting a sign or requesting a sign to be placed up in your neighborhood that says something like Slow down, slow down autistic child, or something like that, or the stickers that are put on the back of your cars that say something like autistic child on board or something like that. Now, obviously, these things are done with well intent. Obviously, these things are done to protect our children, they’re things like, Okay, I need to put the sign here because people need to slow down because my child does not regard traffic and he’ll run into traffic and cars need to slow down. That totally makes sense. Same with the stickers on the cars, it makes sense that you want to put a warning in case an emergency happens, and they need to break into your car and your kid’s nonverbal, that totally makes sense.
Matt: Right, and I think the big thing is, I’m coming at this from more of a safety concern. If you’re putting a sticker on the back of your car saying autistic child on board, you’re letting every person every creep, every everyone out there, letting them know that you have a child on board that if they are kidnapped, or anything along the lines, they won’t respond like a neurotypical kid. So they might not scream, you might just take their hand and they might just walk off with you. Or they might just as soon as the doors open in the car, they might just run off as is. So I think I’m seeing it more as a protective parent where I would be terrified of someone tracking me based on something that I put on the back of my car that they know oh, there’s an autistic child in there.
Lia: Right. So you kind of have to weigh the pros and cons. We already mentioned the pros of you know, helping with awareness and getting your child the help that they need should an emergency come up or safety. But the negative sides to that is, like Matt mentioned, the safety issues of potentially inadvertently putting a target on your child’s back. One of those things with a bumper sticker is a lot of the ones that I have seen are extremely detailed. And I’ve seen parents put these up and they put pictures of them on Facebook. And I just cringe because they say things specifically like not just autistic child on board, they’ll say autistic child on board and then on top of that, they’ll say child will not be able to respond child will not be able to communicate my child might run and like it basically lays out in fine detail all the things your kids —
Matt: A checklist for a kidnapper of perfect I don’t have to worry about any of these things. Now, I will say that I did see through some of the ads that there is for emergency personnel, there is a way to say that your child is autistic. So I think of the seat belt straps, I’m not really sure —
Lia: They have this thing that you could put on your seat belt that’s like a Velcro cushion that you kind of wrap around the strap. I think it’s supposed to be like a neck protector or like a chest protector.
Matt: And on there. It basically says I am autistic, I may resist if you’re trying to help me essentially. So if you are in a car accident, and you’re unconscious, and you have emergency personnel trying to get everyone out of the vehicle, they will be able to see the strap and right where the situation.
Lia: So it serves the same purpose, but it’s more private because it’s inside of your vehicle. And if you really feel like you need the sticker, like I know some kids won’t stay in the car, see, or they’re strapped and they might pull it off, or they might take it off and that might not work for you. So you could use the same sticker that you would use on a bumper sticker and simply put that inside your vehicle somewhere maybe on the inside of the window or on their door or something like that.
Matt: Back of the seat or something along those lines.
Lia: Right. So that’s one of those things that people tend to not want to let it go because people really like putting stuff on their cars like it’s part of our identity. Sometimes a car can be an extension of us. That’s why bumper stickers are so popular. But I really urge people to reconsider that just because of the safety issues you don’t really want to attract.
Matt: Well it’s also funny that you mentioned that that’s a part of my identity because we also see as far as social media kind of similarly linked with people displaying information about their autistic children as well. So I mean that is also partly linked to their identity as well where people have no problem basically sharing their child’s diagnosis to hundreds of people.
Lia: Yeah. So that’s actually another one of these topics. And that is publicly disclosing the diagnosis. Actually, this is something that I have spoken to autistic adults about. And it goes along with posting videos of negative behavior from your child. So things like meltdowns and stuff like that the autistic community is really upset with the fact that a lot of parents will publicly post not just the diagnosis, but evidence of your child when they are having a meltdown or sensory overload or something else that is considered, “undesirable”, and sharing it with the world. And there’s a couple of reasons why. One of them is publicly disclosing the diagnosis takes away the child’s ability to consent to that. And I know that for me personally, as a neurodiverse individual myself, I would have been mortified if my parents went around telling everybody about my diagnosis.
Matt: Thank goodness, Facebook wasn’t around when we were younger?
Lia: Yes, thank goodness. Because I know for me, I would have been really embarrassed. And I definitely would not have liked that. Sometimes parents don’t take that into consideration because the children are really young, or they’re nonverbal. Or sometimes we think that they don’t understand as much as they really do. And then we find out later that actually know more than we think.
Matt: And I think the other thing as far as posting a video of a meltdown, if you think about how would you like it if your parent were to post the most embarrassing thing of your childhood.
Lia: For the whole world.
Matt: Right? If Okay, if you’re a two or three year old, and you have a bathroom issue at the mall, and you happen to pee your pants or something, and you’re getting embarrassed about peeing your pants or something in public, I mean, it’s not flattering for anyone.
Lia: And it’s forever, right? It’s up forever.
Matt: Right and it doesn’t serve a purpose to anyone. It’s just showing the struggles that the child is going through without any disregard for how the child is actually feeling at that time, it’s completely pushing it aside.
Lia: And again, these are things that people don’t consider because our children are younger unless you’re posted these have older children, which is possible too. But if those videos do get tracked down, it makes her kid a prime target for bullying in the future. Bullies have started to mine Facebook for embarrassing videos from people that they will then use to either blackmail those students or they’ll use it to bully them further and spread it and make viral video on Facebook. It’s very easy for somebody to be able to do something like that and although they might not be in school for a couple years down the road. There have been several cases of people holding on to videos for a couple of years before they decide to use them on people so I wouldn’t put it past them and that’s just something that I personally have decided against doing is uploading any of those videos.
Matt: Right, so just ask you all just to think twice before you actually take a video or post a video online just what is the real purpose that you’re going for with this video? What is the intended purpose who is it intended for and just ask yourself if it is really absolutely necessary to take the video in the first place?
Lia: Alright guys, we’re almost done whacking you guys with a baseball bat, we only got one more of these to go. Hold on till the very last one that we got here for you guys is the idea of person-first language probably have heard this from any parenting, I guess they’re called parent training sessions that you’ve done through any sort of Autism Center or through in infants and toddlers program or your public school system. So to cut to the chase, the issue here is person-first language. Just when you are referring to a person before the autism so instead of saying autistic, it’s a person with autism. So instead of saying “My child is autistic”, a lot of professionals in the field — doctors, physicians, clinics, parent support groups — will say that the appropriate and polite thing to do is to refer to that autistic child as with autism. So you would say, “Oh, yeah, my child has autism”. You wouldn’t say “my child is autistic”. However, you may be surprised to know that the autistic community actually finds that offensive and prefers autistic. So they actually go against what most of the professionals will say they do not like person-first language, which is saying again, a person with autism they actually prefer to be referred to as autistic. And the reason why is because the implication of person-first language is that autism is more like an accessory like a purse that you can set down because it’s a person with the purse. It’s a person with autism, and many autistic adults view themselves as having autism be part of their identity and who they are that something that is inseparable from their very being. And because it’s inseparable, they define themselves as autistic. I am autistic. I cannot put my autism down and put it aside like I would an accessory. I’m not walking around with autism. I am autistic.
Matt: And I suppose I’m an offender of this type of language because I’m not even sure how to actually describe my daughter’s autism. It sounds terrible, but I’m not sure if I’m going to be crucified by the medical professionals or by the autistic adults. So I’m not even sure how to describe it, to tell you the truth. And I mean, I think for me, because I mean, I have disabilities, I don’t think that the disability defines who I am as a person. So I guess I’m not even sure which would be right. I’m not sure where I would actually fall into this argument myself, which might be the problem, because then it looks like I’m gonna be shot by both sides anyways. So I don’t know how you win here.
Lia: Yeah, so I honestly, I don’t play the game, I don’t really care about winning. To me, it’s more about just respecting the person that you’re talking to specifically. So the best kind of call to action here is if you are around an autistic adult, simply ask them what their preferences? Do they prefer to be called autistic? Or do they prefer the with autism person-first language.
Matt: Or their name?
Lia: Or their name? Yeah, I know, right. But when it comes to your own children, I think that that for us is going to be a decision that we’re ultimately going to leave up to them once they’re old enough to make that decision. And until then, we’re kind of just going back and forth between the two. I personally, I think you guys probably have noticed by now through this podcast, I personally use autistic a lot more, because I do know that is what the autistic community prefers and it just makes sense to me. It’s also shorter.
Matt: I mean, as far as when you’re just having a conversation with someone. It’s easier, right? I mean, I hate to admit that, because it’s easier we use it.
Lia: easier to say autistic than person with autism. And that just sounds weird to me, I’m sorry. But it does, I do kind of refer and self-reflect a little bit to my own neurodiversity. Because I have a couple of different things. I told you guys, I have ADHD, I have a few other things as well. And at no point in time have I really sat and cared much about how people refer to me, I don’t really care if they say I am ADD or ADHD versus I have ADD or ADHD. For me, they are kind of like, I can use either of them. And it doesn’t really bother me. And I know that there’s autistic adults out there as well, who will go between the two. So I think the best rule of thumb here is just ask the person and then when it comes to your own child, maybe go between the two or defer to autistic until they’re old enough to kind of let you know what they prefer. But I just wanted to give you guys you know, word to the wise out on the streets, it is considered offensive to say person-first language, you are better off saying autistic.
Matt: So hopefully this helped you navigate the waters a little bit better. And hopefully, you hadn’t made too many enemies in the process. And hopefully, we’re not a couple of those enemies as well.
Lia: Yeah, I think we set off enough mines in this episode to leave you guys with a few resources to help you out. We’re going to end this podcast. But before we do, I’m just going to let you guys know there’s a couple of autistic adults that you should probably follow. To get a better idea of what we’ve been talking about in this episode, you can follow a series on YouTube that’s called Yo Sammdy Sam, that’s yo s a m d y Sam. This is an autistic adult who goes through a lot of this stuff. So you’ll get her perspective. There’s another series that’s called Ask an Autistic that is also on YouTube. So you can go ahead subscribe to that channel if you’d like but that that person will give you some insight on their experience as well. And then to give you the flip side of it — because those tend to be a little more on one side of the argument — this is the flip side of the argument; another autistic adult you can listen to or read up on her blog is The Autism Cafe that is a Facebook group as well as a website and blog and that person is the one who’s more on the pro ABA pro puzzle piece side. The other two are more against but that way you kind of see both sides of the issue. And that’s all we have for you guys today.
Outro
Lia: Thanks for listening to embracing autism. Join us next time as we wrap up season one with our final thoughts, give our best tips on how to go from here and words of encouragement to help you continue on this journey. This is Embracing Autism.
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Resources
The Autism Cafe
Yo Samdy Sam – Autism, neurodiversity and exploring the autistic experience
The Autism Puzzle Piece: A Debated Topic
Boy with Autism Builds World’s Largest LEGO Titanic Replica
