(Sonya) April is Autism Awareness Month, and Today is World Autism Awareness Day. So we want to find out a little bit more about what it means to be Autistic, what Autism Spectrum means, and we have the great fortune of having Program Manager at Autism Spectrum Navigators at Bellevue College, Sara Gardner, joining us. Good afternoon, Sara, thanks for coming to the studio today.
(Sara) Thanks for having me.
(Sonya) So, I’m gonna have you start off a little bit with talking about Autism Spectrum, but I’m actually going to make a little bit of an adjustment before I do that, so I’m actually gonna play a little music, and then we’re gonna come right back to this discussion.
(Sonya) And Sara, thank you again for coming into the studio today; How are you doing today?
(Sara) I’m doing well. How are you?
(Sonya) Great! OK, so now you sound so much better. So, first of all I want to start with, “What is Autism Spectrum? I know there are a lot of definitions out there, and I want you to give some clarity about what that means.
(Sara) Well, so it really is a spectrum, and it’s different in every single person that has an Autism Spectrum diagnosis. But at its heart it is a difference in the way of seeing the world, and it’s a difference in the way of communicating. So, people call it a communication “disorder” because people on the Autism spectrum communicate very very differently than a “neurotypical” person, as we call them.
(Sonya) Can you give me an example of what that looks like, you know, you say they communicate differently? How so?
(Sara) We, and I say we, because I also have an Autism Spectrum diagnosis, are very literal. We don’t use a lot of abstracts for the way we communicate, so we say what we mean. We don’t imply things. So, sometimes we get ourselves in trouble because we’re very literal: if someone says, “how do you like my dress?”, we will tell you how we like your dress, for example. (laughs)
(Sonya) OK, well I know there two, kind of two approaches when we talk about Autism awareness and what people, you know, want you really want people to get out of it. And there’s one approach that is to fix it, right? And there’s another approach that is really just more about acceptance. And so I wanted you to talk about those two approaches and really kind of define what both mean, but where your perspective is and what point of view you’d like to share with the audience.
(Sara) Well, there really are two approaches, and I think they come from, really, places of the heart because it is a spectrum, so there are some people who are very highly affected — so some people can’t communicate at all. They don’t speak; they don’t have self-care abilities, and so people who are really involved with people at that end of the spectrum want to fix autism — and so they are on campaigns of, you know, we’ve gotta fix autism. Then people on the other end of the spectrum want to be accepted for who they are. And there’s this place, you know, in the middle where we don’t really know what to do, people don’t know what to do, so there is a big push for Autism acceptance. And in fact in the state of Washington at the end of March, Governor Inslee declared April “Autism Acceptance” month, rather than Autism Awareness month.
(Sonya) Well that’s fabulous. So I want to know, how do you react when you hear that mentality, or the approach of “fixing it”.
(Sara) Well, so I saw an ad, well not really an ad but a thing on Facebook the other day that really, really bothered me. And it said, “3.2% of boys may not achieve their dreams, travel the world, live independently, serve their country, become a leader, fall in love, be a husband, a father, raise a family because of Autism”. And it said 1 in 31 boys. And that 1 in 31 boys includes everybody on the Autism spectrum, and that statement isn’t true of all those boys. But what those kind of statements do is they hurt those boys on the autism spectrum because they put out false information and so when that boy goes to get hired for a job he’s less likely to be able to be hired because of that bad information out there.
So we were actually successful in getting the site to take down that bad information about Autism by speaking up for those people. But it is quite upsetting to see those, you know, “Autism is a tragedy”, “autism is coming to take away your children”, you know those kinds of statements.
(Sonya) Well speaking of bad information, um, early on in the shooting death that happened in NewTown, they talked about the young man, the shooter, and did put out the information that he could possibly have Autism Spectrum and I know that was something that was also brought up with the young man in Colorado as well. So there also seems to be a link sometimes when there’s a mass shooting or someone in the media who’s “done an evil”, so to speak, they, you know, they’re looking for these answers and we do hear that, you know, Autism come up sometimes and I’m just wondering, how do you speak intelligently with people about that? Because I know that that’s, you know, obviously, there’s a lot of emotions when, you know, there’s a shooting, such as those shootings that occurred …. so how do we talk about it as it relates to that, and separate that negative connotation of “bad?”
(Sara) Right. Well, and in Colorado I think there never was any connection. I don’t think he ever had any sort of even anyone wondering if he was on the spectrum. For Adam Lansa it hasn’t been confirmed but they did find some Autism books in his house and so maybe his parents were at least wondering whether he was on the spectrum. What is true is that autism has never been linked to planned violence. In fact, people on the Autism spectrum are more likely to be victims of violence than to be perpetuators of violence, and so those are the facts behind the information. But as you said, people are always looking for answers and so they kind of wonder if that’s not what caused it, when in reality that’s not the case.
(Sonya) Well I know you, as you’ve already mentioned, have Autism Spectrum, and I wanted you to talk a little bit about your own story, and when your family found out and, you know, how did you find out and how did you, I guess,incorporate that into your everyday life and still, you know, move along and not let that be an obstacle as it in some cases sometimes can be.
(Sara) So when my son was ten years old, he was diagnosed with Tourette’s syndrome, and we found out about a year later that he actually had an Autism Spectrum diagnosis. And as I started learning about the Autism Spectrum, I would stay up really late at night reading on the internet, and I suddenly started recognizing myself in what I was reading and my whole life began to make sense to me at that point. And so I had been seeing a psychologist and I went to him and I said, “do you think I could be on the Autism Spectrum?” and he said “Absolutely not.” And so I said, Well, alright, I’m gonna still think about this. I came back the next week and he said to me, “You are definitely on the Autism Spectrum. I went through all of your files; there are so many markers, I don’t know how I missed it, and I want to do a few more tests but I really think you are.” And so he confirmed it and he gave me a diagnosis. We have since found out that my brother — who didn’t speak until he was 4 years old — he’s never gone for a diagnosis but he could have a high functioning Autism diagnosis, and my father has been diagnosed with Asperger’s syndrome. So it’s throughout my family but it’s made a huge difference in understanding myself.
(Sonya) And, when you say making a huge difference in understanding yourself, what were some of the things as you say you look back and you kind of, you know, said wait a minute, you know, I think I see myself in what you were reading or researching for your son, what were some of the things that you saw that weren’t recognizeable obviously at the time but now in retrospect you’re able to identify them?
(Sara) Well, one thing is I’ve always had very very good intentions, but my intentions have not been clear to other people. I’ve always felt very very misunderstood. As soon as I started understanding what the Autism Spectrum was, I knew why I was so misunderstood, and I began to be better able to communicate my intentions because I knew how they needed to be communicated to. So by learning directly what the pitfalls might be of the Autism Spectrum I was able to move beyond that intellectually, by knowing what it was.
(Sonya) Mmmm. And that’s a nice way to kind of be able to bridge that gap. Well, talk about — you know, we kinda touched on it a little talking about the Adam Lansa situation — but you know, media portratal in general. Talk about how the media portrays the Autism Spectrum, you know, for on the one hand you have, you know, advocacy, kind of media portrayal, and on the other hand you have another kind of extreme I think. So I wanted to get your take on how you think the media portrays it and what those images — how they impact people who are dealing with autism spectrum.
(Sara) So there’s a few different types of media portrayal, first of all there’s a lot of TV shows right now that have characters with autism. So they like to either show the character as some sort of bumbling, beloved, genius type character — which, really only a few/small percentage of people on the autism spectrum are geniuses. And so that kind of does a disservice to all the other people on the spectrum who are not geniuses, because, you know, they have other wonderful qualities (even though they might not be geniuses.) But then also the corporations, and I call them corporations — even though they are non-profits — who are trying to raise money, they call it “Money for Awareness”… There’s particularly one corporation that wants to “Light it up Blue” for Autism Awareness. They’re trying to raise money for research; that corporation raises hundreds of millions of dollars. Less than half of it goes to research. More than half of it goes to salaries. And so they use the fear tactics, of — you know — “so many people have Autism, we don’t know what to do, we need all this money, please give money for the children” — you know, all this, really trying to scare people, that “if we don’t find out what causes Autism, your children are gonna be next” kind of thing. They have pregnant mothers terrified. And then there’s the Autism Advocacy groups, who are made mostly of people with Autism, who are saying, you know, “We have civil rights! you guys are trampling all over our civil rights by painting this picture of us as these scarey, dangerous people! And you need to stop because we can’t get jobs; we can’t, go out in public, because people are afraid of us.”
(Sonya) So, what message would you like to put out there, to people listening right now, in terms of how they think of Autism Spectrum, and also maybe challenging some of those images that they do see in the media?
(Sara) Well, I’d like to put out the message that the images that you see in the media are the worst case scenarios; they represent just a small percentage of the Autism Spectrum, and it really is a broad spectrum. You meet people on the Autism Spectrum every single day, and you might not know it. So my message is that we are out among you. Amanda Baggs, she is a staunch Autism advocate, she actually doesn’t speak, but she types, and she says, “We’re here; we’re Weird; Get Used to It.”
(Sonya) I like it. “We’re here; we’re weird; get used to it!” Well I know that you also have some things going on this month and there are activities going on to build Autism Acceptance, so I wanted you to talk a little bit about some of the things going on and I also wanted to give out some information as well. So I thought that the best way for people to learn about Autism would be to talk with people who have Autism themselves, rather than get their information from the media, so we made up some buttons that say “Ask me, I’m on the Autism Spectrum” and anyone who’s on the Spectrum that wants to get a button at the Disability Resource Center can come and pick one up and wear it so that other people on campus can ask them … and we’ve actually had some people from staff and faculty come and pick them up, so you might want to look around. And we’ve had some students, of course, come and get them, so we’re pretty excited about that.
(Sonya) And that’s here on the campus at Bellevue College, so they can come to the, where are your offices located on campus?
(Sara) The Disability Resource Center’s in Building B, Room 132, right below the Planetarium.
(Sonya) OK, so in Building B. And I know also there is an event coming up on Saturday, April the 13th, it’s the second annual Autism Awareness — although we’re gonna say Autism Acceptance — Video Game Tournament, and it’s gonna take place on Saturday, April the 13th from 11 a.m. to 5 p.m. at Bellevue College Cafeteria on the campus at Bellevue College. And you can learn more on their Facebook page at “ASNavigators”. So you go to Facebook.com/ASNavigators, and you can find out more information about the Video Game Tournament. And I know that with the Video Tournament, also, it’s more than just playing video games; there are also going to be a panel of students talking about the Autism Spectrum Navigators program here on the campus, and there will also be some seminars. So it’s definitely a day where people can come and get more information as well as also participate in the video game tournament.
(Sara) Yep, definitely.
Well thank you very much Sara Gardner for being here. Thank you for shedding some light on what sometimes tends to be a little, you know, a little different when you see all those different images going on, so I appreciate your time and your energy in coming in to give us more explanations about what it does mean to be Autistic and Autism Spectrum. Thank you very much! Again, if you want to learn more about the video game tournament, you can go to Facebook.com and find ASNavigators. This is “Music and Ideas”, and we’re going to get back to some music.
Last Updated January 27, 2014