Recording from my living room in beautiful Marietta, Georgia, you are listening to the thinking cluesive podcast episode six. I'm your host, Tim Vegas. Today I will be speaking with Ariana Durscher, a Huffington Post blogger as well as the creator of the blog, Emma's hope book, a chronicle of sorts about her autistic daughter. She is one of the leading voices in the autism community. And I had the pleasure of visiting with her one evening in June. Arianna and I discuss what it was like to go from knowing nothing about autism when her daughter was first diagnosed, to being such a strong advocate for the Autistic community. We briefly talked about inclusion and what that looks like in her family. So without further ado, let's get to the thinking cluesive podcast. Thanks for listening. All right, joining me today on the think inclusive podcast is Ariana Durscher, who is a blogger as she was she's a Huff Post blogger. And she also writes for her website, Emma's hope book. And we have connected over various social media. In fact, I've had her use some of her articles on the thick of thinking inclusive.us. And we sort of had a back and forth about inclusion, what is inclusion, and then also talking about Emma, and I'm very pleased and honored to have Arianna here on the think inclusive podcast. Thank you for being with me, being here with me.
Oh, thanks so much for having me, Tim. Pleasure.
Great. Great. Before we dive right into the questions I had, I was a little curious about Emma, and is Emma is her real name. Is that correct? Yeah. Yes. Okay. So there are many bloggers and many, you know, autism, mom, bloggers, autism, family bloggers, who decide to change their name, you know, with the with the kids and with the family members and stuff. I wanted to know, is there a particular reason why you chose to use Emma's first real name in the blogging?
So so when I began blogging in 2010, I never thought anyone was going to read the blog. I really didn't. So in the beginning, it was sent my family, not even all of them. And a couple of good friends. And it was really because people were asking a lot of questions about how Emma was doing and what's going on. And I got so tired of writing the same emails. And so I just thought, I'm gonna streamline it and I'll blog, I'll just start a blog, and then it and then it kind of took off. And so the answer is incredibly, in today's age, I it never even occurred to me.
Yeah, that's interesting. And
honestly, if I started a blog today, would I change everyone's name? I think I probably would.
Right, well, have you have you? Have you experienced any? I guess negative effects because of that?
No, and I even if I had changed everyone's names. I still would ask my daughter if it's okay to, to, to quote her and I would ask her is this photo okay for me to post and? I wouldn't. So, I don't know. I don't know that it would, it would matter. Quite so. You know, I honestly I can't even fathom what that would be like, I didn't do it. Right. Right. And Emma is a very she's pretty gregarious, and she really loves the limelight. I mean, if there's a stage Amazon at, you know, if there's a microphone, she's, she's speaking, she's singing she's, she wants to. She She loves an audience. If it's a party, she's in her element, and she wants to perform and will sing songs. And I mean, I had a party that was thrown for me for my 50th birthday celebration and it was almost 100 people and she got up there and saying, I mean, she is just without inhibitions. It's a beautiful thing.
That is a beautiful thing. Yes, yes. And I think that is, is unique, although I don't you know, I can't read all of, you know, the blogs that deal with autism like, no one can. But, but I do follow yours pretty closely. And it seems, from the pictures that you post of Emma, that she does really enjoy that, that that's something that really comes across in the in the pictures that you decide to put, you know, with your with your posts,
right. She'll she loves it. She absolutely loved it.
So going back to when you know, maybe when you first started the blog, and when she was first diagnosed with autism. What so what how old was she when, when you first when you first got that?
She was two, she was almost three, we got the diagnosis. And it's September, she turned three in January. And we knew we knew next to nothing about autism, although retrospect, I absolutely see signs now.
So when when Emma was first diagnosed with autism and you, you, you, like you said you had no idea what autism was? What was your initial reaction to that? What was it? Was it a medical diagnosis that did the doctor? Did you go to a psychiatrist? Or how did that? How did that play out?
Right. So what what we had, it was the end of a long series of different tests that we had gotten her via her hearing tested, and all different kinds of things. And eventually, we were advised to get a full evaluation. So we did that through an agency here in New York City. And at a certain point, I said to one of them. One of the people who was here, I said something like, do you think this could be autism. And the reason I asked it was because after each evaluation, I would go to Barnes and Noble. And I would sit on the floor and go through their entire section, pediatric sex section. And so I came upon autism, and I started reading about it. And there were things there weren't a lot of things, honestly, that sounded descriptive of my daughter. But there were a couple of things that seemed interesting and, and seem to perhaps illustrate some of what we were seeing a loss of language, a different way of speaking. So that language wasn't being it wasn't as though Emma was learning a word and then once building upon that word, or that the word would necessarily ever be heard again, she would say a word, and then we may never hear it again. And And in retrospect, I see how it seemed very regressive, but I actually am see I see it differently now, much later. In any case, when I said that the therapist right away, stopped everything and sort of looked at me and said, Why do you say that? And I said, Well, you know, she doesn't she, she doesn't answer to your name. Most of the time. She doesn't look at us when we call to her. We've had her hearing check, et cetera. And so at that point, she said, Well, I need to call the I need to have a psychologist come in, which I thought was really interesting. I had no idea that a psychologist because to me, I'm thinking, well, this isn't a mental psychological problem. This is a neurological problem. Why are they haven't? Anyway, I never did find out the answer to that particular question. But they had the the psychologists coming in. And she then really talked to us and did very little evaluating directly with Emma, she did a couple of different things, made some notes, and then she just sort of spoke to my husband and I. And at the end, she said, You know, I think I'm on the fence with this, but I think your daughter definitely will benefit from early intervention. And the best way to get in early intervention is with if we give her a PDD NOS, diagnosis, and so we're gonna go with that and let's just, you know, keep our fingers crossed, I think was the exact words she used and keep an eye on her and see what happens and you know, best case scenario, all of this will be for naught. And so we said, okay, you know, we'll Okay, that's Sounds reasonable. And then she went away. And then the evaluation continued. And then we finally and then we got a phone call. And the woman said, Well, you know, we've dispirited, sad voice, you know, well, we've, I'm so sorry to be the one to tell you. And it was just set up as just this, you know, it was like it had tragedy just written all over it. I mean, it was the way it was spoken, the words that were being used. And I, as you, as you know, from looking at the blog, I mean, I really object to all of this, this this way, I just think that it's utterly unhelpful for any of us. It's not helpful for our child to be viewed of and spoken of, in these terms. And it definitely wasn't helpful for me as a parent. And I remember that was a moment, a moment where I just felt like the icy grip of fear, you know, I mean, like, really, really frightened. It was suddenly it went from okay, you know, maybe, you know, who knows what's really gone. But we've, you know, now we've got an action plan. Right, you know, and but it wasn't like that. It just felt horrible. And I just remember being just feeling devastated. Not devastated. Because I was being told that my daughter was something that I thought she wasn't devastated because of the way in which it was being told to us really, I mean, the devastation of just this thing that others clearly believed was a horrible, horrible thing. Right. Right. And, and that really started us then down this road of me thinking, Okay, I'm gonna learn everything I can about autism. And we're gonna fix this.
Right? Yes, of course, that's,
you know, that's, that's a long dark road. Down and that I did, and that's, and so that was, I think, caucus out, boy, can I do things differently? I would have?
I think that is, that is the reaction of many, many, many people, many families who, who are initially told that autism is a tragic thing. And, you know, in no way am I am I saying that it that it can never be tragic, because I think there are things that we can do, and we can let, we can let things get to that point. But it certainly needs to be framed in a different way. So, I'm curious, if, if, if someone were to tell you, like, if you were to go back to that moment, what what do you think, what would be the most helpful for a newly diagnosed, you know, family, I guess, you know, what would you say to them,
I wrote a, I've written a couple posts about this, it's kind of my wish list. What I would love is if, first of all, I would not want to receive this information on the phone, I would like to have a face to face. And my ideal scenario would be that I would go into an office of several people would be there, there would be someone who is telling me explaining to me what all of this means. There would be an autistic person who's self appointed, had was hired by the agency, there would be, you know, the those two would be an absolute requirement. And from there, I would then be told, you know, this is this is what we have. This is the reason why we've come to this conclusion. We don't know for sure that this because there was a lot of unsure there was not it wasn't definitive. It was absolutely. We think this might be what's going on, but we're not sure. And then there would be a whole series of things. Are there handouts or things that I mean, it would preferably handouts, things that they could tell me, presumption of competence. Absolutely important. I mean, that is important for anyone that that handout is important for any parent, I don't care what the neurology is, presuming competence, and explaining what that is. And then and then I think that there would be so much information that there would have to be a kind of flow I'm offering of a follow up. But I think it's key to avoid all of these terms, these this language that autism has. So been equated with that, I think is a disaster. For everybody involved, nobody is benefiting from this kind of life. Well, someone who is benefiting companies that are making massive amounts of money off of autism as an industry, all kinds of people are making huge amounts of money. But the people who really aren't benefiting our children and the parents, we are not benefiting. And I think that really has to stop. And we're going to get a huge pushback from the big organizations that are making massive amounts of money off of this kind of fear based model. But we have to, we have to, I really believe we have to fight it. And that's really what I'm trying to do with with my blog and all that I'm writing. Whatever I'm writing about autism, this is what I'm trying just this whole idea of an us in them, and we are superior, and they are in fear. It's an I don't know, I don't buy any of that. I think it's wrong.
Do you think that the parents who I guess support certain organizations, or at least write blogs, and you know, and have a perspective that are coming from this, that this is tragic, and I wish there was a cure or a fix? Do you think that parents who come from that perspective, are just misguided, or
no, no, no, I think that they I think that there is so much misinformation that has been given to them from the right from the beginning. And, and, and they and they believe it? And I do too. And I think it's just and I think that's part of what's so horrible, is that the information that's been given is so, so lopsided, it's so biased, it's so deeply ingrained with prejudice that I think so many people aren't even aware of. And in fact, if you said, do you understand that this is ingrained? Basically, this is ingrained prejudice, they would be horrified and would say, Absolutely not. I think people really, really believe many, many people really believe in what they're saying, I don't think that they're for a second thinking about thinking, Oh, this down the road is going to lead to my child having horrible self esteem, or post traumatic stress, or depression, suicidal tendencies addiction, that people aren't thinking about that they're thinking I need to save my child from this horrible thing. Right. And I think that the organizations that are out there, and I'll just say the names are like Autism Speaks. I think that they have a very specific idea. And they, they they are getting, there's absolutely no doubt that they are making a tremendous amount of money by by continuing with the fear. I think they're trying to change that. I think that there's certainly been some attempts I think they've been they have not been what what anyone would hope. But I do think they're, they're saying that they need to, to at least pretend to try. I don't know how much they believe in any of this. I think they're couching the language. I think if you dig deeply Well, I don't think I know, if you dig deeply into the site, you can see all the language is still there. They certainly believe that this is, this is the best way to go. But I think that when any when any group of people are marginalized, society, all of society suffers. It's not just the marginalized group. And I think we've seen this in history. I don't think this has anything. I don't think I'm saying anything particularly brilliant. I'm certainly not saying anything new. This is something that people have that no and had said, but I think that because autism has only come into the public view fairly recently. We're still we're doing a lot of the stuff that we've done with a lot of other marginalized groups of people. And, and, and fear is certainly been something that throughout history has been useful, useful to, to push an agenda through. So it gets political Well to you know, meanwhile, there are all these people who are autistic and who are, who are having to live a life among a society that are not accommodating, that are prejudiced, that are misinformed, that are behaving out of ignorance. And they're the ones who are who are having to cope with the brunt of all of that.
Right, right. And we're not afraid of controversy around here. So I know that it's, you know, I don't know a lot about Autism Speaks other than the what i've what I've read, and what I've read from the blogs of autistic individuals and families, and I have never had any personal connection with them. So. But everything that I've read and heard what, what is most interesting to me, is, is when you talk about who are the really the autism experts, right? And is it? Is it people? Is it autistic people? Who are the experts? Or is it the people that diagnose autism that are the experts? You know, and and it would seem to me that if you wanted to know about autism, you'd want to know it from someone who was autistic? Right?
So I mean, one of the quote, you know, that question you asked about in the beginning, and what would you have hoped for? One of the key points would be people who are autistic to have had interactions and to have had a list of people perhaps, who were hired by various organizations, who were evaluating children and first reaching out to families, people who self appointed and volunteered, perhaps were, whatever I autistic people need to be a part of this process. They are they more than anything, those are the people who have completely transformed my thinking and my understanding of not just my daughter, but of autism, and really of the world. They've opened my eyes to all kinds of things. Inclusion, I mean, it never even occurred to me to think about inclusion for my daughter, and what does that really mean? And what would that really look like? Were it not for my autistic friends who has talked to me about it? There's just, you know, it's him, it's, it just is absolutely mind boggling to me how the perception that I had when I was first getting my daughter's diagnosis, by all those so called experts. And, and I guess we need to define what an expert quote unquote, really means. But those people, what they told me and what I would read on the internet, is so completely different, radically different from my understanding of what autism is and what and, and what that means for my daughter, completely transformed. And it's been transformed as a direct result of my interactions with so many autistic people, many of whom have been come really, really close friends, people I care deeply about and for, who are in my life on a daily basis. And those people have given of themselves so generously, with with no wood, simply because they are patient and kind and compassionate human beings. You know, what is the reason for them to, to sit and to chat with someone like me that they have no obligation? None. They're doing it simply because they are kind, loving, compassionate people. And it helps that, that we like each other that we genuinely genuinely like each other. That's that helps. Right? You know, obviously someone isn't going to talk to me, he doesn't like me, but but I can't tell you how many people have extended themselves, to me have voluntarily come and reached out to me and was with no other more motivation than to, to be just the kind to help help cool person.
Right. It's been, it's been my experience as a as an educator, because when I first my first job out of out of the university was a behavior therapist. So I would do, I mean, I did discrete trial, you know, one on one in home in school and, and found myself to be an inclusion aide, you know, doing, you know, kind of those behavioral principles and all that stuff. So, it was a very interesting kind of, it was an interesting introduction into autism. And it wasn't until I started listening to autistic individuals, that I really begin to change my, my view of autism, and, and things started to make more sense to me actually, once once I started to really listen to autistic people. And so I was just having a conversation about this, about this autism experts thing with a colleague of mine, and because we were talking about the controversy, or I guess, criticism of some parents who say, well, those, those quote unquote, autistic people don't speak for my child, because my child doesn't communicate or my child, you know, can't communicate that way. Or, and so I said, Well, you know, well, how autistic do you have to be, you know, for someone to listen to you, you know, like, if you have a, like, my friend, Larkin, who is here in Atlanta, was diagnosed around the same age as Emma, I suppose, two or three years old, you know, with with severe autism, quote, unquote. And, you know, and she has, has come a long way, you know, and is going to law school. So, you know, I mean, where is the line? You know, where, you know, how can you say, and you point to someone like Ari, you know, naman and say, well, he's not autistic enough for me to listen to, or, you know, Paula, I'm gonna get her name wrong, but or, you know, the numerous people that are out there who are blogging, let's say, Thank you, the numerous people that are blogging, how can you point to anyone and say, well, they're not autistic enough for me to listen to them? You know what I mean? Right.
So I think that there's a lot of division and divisiveness. And it's an it's unfortunate, and I think it's actually, on some level somewhat unnecessary. I think there's a lot of misunderstandings. I think a lot of parents, it seems to that I've, that I've had spoken to me or contacted me feel attacked, and, you know, all of these various things. And I think that the thing, the thing is, there are a number of things going on. One is, I can sit here with you, and I can totally dismantle the way in which Emma was evaluated, and the way in which we were informed and tell you about all the things that were wrong. And I can tell you, I mean, I could sit here and go on and on about how I, I am not a proponent of ABA, and the reasons why, and I could, you know, and, but I think that if, if there, it's one thing to tear something down, and I think that there's it's really important to do that. But I also think it's equally as important to offer an alternative. So I think that a lot of parents are just feeling like they're being torn down, and they take it personally too. So if they're doing ABA, and they've been told, you know, you need to do ABA, and they bought into that whole line. You know, when Emma was diagnosed, there was no other alternative. It was the only agency's offering. I mean, it was the alternative was you do early intervention, therefore you do a BA or you do nothing, right. And that was, I mean, now there are many more options. Before
before I let you go, Ariana, I wanted to ask, which was actually what originally prompted me, you know, for to ask you on the podcast was the question of inclusion. And we briefly touched on it during our conversation, but how? I guess how are you thinking about inclusion as far as Emma and I guess in her fit in the family and in her school environment, in your community environment, I guess, how does all that play out? For me?
Right, okay. So I love to I love this whole concept of inclusion. It's, it's, it just fills me with so much hope for for our world. So the whole idea for me about inclusion is actually about life. And the world and I want to have a society in a world that that welcomes my daughter, as part of, of humanity. And that's, that's the ideal and that's what I hoped for. That's what I hope I'll see one day. That's what I hope the future is going to bring.
That's going to conclude this edition of The think inclusive podcast. I had to cut short some of the interview that I had with Aireon because of some technical difficulties. But if you want more information about Ariana, you can follow her on Twitter at Emma's hope book. And on her website, Emma's hope book.com Remember, you can always find us on Twitter, at think underscore inclusive, or on the web at think inclusive.us. Today's show is produced by myself talking into USB headphones, using a newly refurbished MacBook Pro GarageBand and a Skype account. Bumper music by Jose Galvez with the song press. You can find it on iTunes. You can also subscribe to the thinking cluesive podcast via the iTunes Music Store, or podomatic.com the largest community of independent podcasters on the planet from Marietta, Georgia. Please join us again on thick exclusive podcast. Thanks for your time and attention.
That concludes this edition of the thinking cluesive podcast. For more information about Paula Kluth you can follow her on Twitter at Paula Kluth and on both of her websites, Paula kluth.com or differentiation daily.com Remember, you can always find us on Twitter at think underscore inclusive or on the web at think conclusive.us. Today's show is produced by myself, talking into USB headphones, using a newly refurbished MacBook Pro GarageBand in the Skype account, bumper music by Jose Galvez with the song press. You can find it on iTunes. You can also subscribe to the think inclusive podcast via the iTunes Music Store, or podomatic.com, the largest community of independent podcasters on the planet from Marietta, Georgia. Please join us again on the think inclusive podcast. Thank you for your time and attention
