IG Live Transcript Part 2: Neurodiversity: a perspective of an actually autistic SLP.

bold font: words of Marie, from @thanksmorris on instagram.

regular font: words of ally from @allisonthehuman on instagram.

I think you said it so perfectly and I’m so grateful that there are now, because when I was in grad school I wasn’t aware that there were resources made by autistic people. I mean its sad and I obviously don’t like admitting that but it’s the truth, its where I was learning,-

[signal cuts out] I did this on my stories the other day, I was watching a neurodiversity continuing ed credit on speech pathology .com where I do a lot of my CEUs. And the speaker was going through this history and they were talking about how in 1999 researchers said, “hey a lot of autistic people prefer identity first language” and then the community as a whole research wise was like “meh” and then again in early 2000s, another person, who I wanna say its Judy Singer, who I believe is an actually autistic SLP too-

That sounds right!

Shes the one who coined the term neurodiversity; or at least that’s who the training attributed it to, idk it could be wrong, but there are actually autistic and actually neurodiverse professionals everywhere weather they want to be open about it or not that’s obviously everyone’s own decision but I think that collectively as a field of research and education its not that these things haven’t been available its that they haven’t been taken seriously.

And that’s unfortunate, um but that’s obviously that’s the goal of having you here is to be saying like everybody look into these resources, because they’re very helpful. Did you want to get to any of the questions that you had, right now?

Umm I feel like most of the questions are things that we are going to naturally talk about and better for when we record other things, but yeah to go off of that and take off the professional hat for a hot second, because I had some nice conversations with coworkers today. They had a lot of good “I have a personal question and you don’t have to answer” and it was just kind of fun to do that because I am here to share so idk are there any other questions that you want to talk about?

Yeah, and um for those of you watching nd listening, feel free to ask any questions on these topics as we go. I have a question already but yeah, make sure youre asking because were happy to talk, or throw a comment in and we’ll talk about it! But I want to go back to the person first language, because admittedly I struggle with when im in an IEP meeting or something and I have a child who, you know, theres that “label” essentially, you know because maybe we don’t know yet and there hasn’t been a diagnosis but its always something that I feel like theres a pendulum that maybe swings and sometimes like you said we hear that “well this is whats preferred” and then we hear “okay wait maybe not” and for someone whos wanting to make sure that theyre representing this community, my student, the best way, can you explain a little bit more, for me because I forget things, what is person first, what is that terminology and your preference, what have you noticed as far as the entire community or if its more of an individual preference?

That’s a really good question, I feel like that’s, its obviously a huge thing. The way we communicate and see ourselves that’s our identity and how we relate to the world. So it’s a big deal to some people and to some people it isn’t. and its- it is definitely an individual thing. So I think the way to go about it is think about your intent, think about the people listening, think about why youre saying it does it need to be said that way, is there a better way to say it, have they said it a different way in the past? Just kind of being really mindful and intentional about those things pre meeting or you know whatever it is. And maybe even keeping a log of your autistic students/patients/clients/whatever with who prefers what, and which parents like to talk about it in “this way”.

I personally prefer identity first language. I would like to say, “im autistic” “ally’s autistic” im happy for my coworkers and my friends and my family to walk around and be like “oh yeah, allys autistic blah blah blah blah blah”. I would enjoy that, other people, that is not there thing. And its also something that evolves over time, originally I was like “okay yeah I guess im on the spectrum” “yeah its kinda spectrummy hahah its cool” and then I was more like “yeah I have autism” or “autism spectrum disorder” or I would say “oh I have ASD” and then it was just like I really started to dive in to the actually autistic community online, at the end of august [2020] I switched my instagram to public and I was like “well im goin for it” and so then I think my language has evolved probably in every post it’s a little bit evident that I switched the words “and” and “with” and things like that those qualifiers and ive switched more to “autistic person” and identity first language. Its my identity that im autistic, im happy that im autistic, it’s a positive trait. You know “happy person” “autistic person” its an interchangeable syntactic thing.

Oh and then so person first language, is what most of us are taught in grad school, I was taught that in grad school. I was taught that, like drilled into my head, so hard that when I got my diagnosis and when my partner referred to me as autistic in a sentence in a joke in a happy fun way, my immediate reaction was like “omg- why did you- are you kiddi-“ like I was so offended and just triggered and I was like “why do I think this?” you know so I had to really think about why was. And I was trained so hard and so worried about offending someone or doing something that wasn’t professional, or whatever that I had really drilled into my head “don’t say autistic, that’s outdated” and blah blah blah. Theres so much tied to it linguistically and historically and professionally and internally and its—- you know—to each their own.

Yeah, no it is! Thank you for explaining though the difference. So identity first is like saying, I like that you put you know SLPs and our analogies..

[spotty video for a couple seconds]

But that makes sense you know its something, again it puts that positive light on it. Versus, not that if someone chooses to say “I am a person with autism” that’s their choice and that doesn’t take away the positivity of it at all but, that difference is something that even when I hear person first I say okay that’s “this one” you know trying to make sure.

In a professional realm like IEPs its really hard to navigate and everybody has their own- to a degree- id say everyone has their own experience with autism and how they perceive it and do they have family members that are autistic, do they have children or you know what is their experience and what are you triggering by saying certain phrasing. It just depends and I think like anything, just talking to a person and being direct about it is going to be the best thing because you know miscommunications are never great, obviously, and especially for a lot of autistic people, like myself included, social misconceptions and things that aren’t clear and feeling like the people around you don’t know how to talk to you and you don’t know how to talk to them because you don’t know how to say “oh excuse me, can you say it this way? _______” or if I don’t know how to correct someone; that’s creating more and more barriers.  And it goes back to childhood for a lot of us feeling like we didn’t have the environments we needed to communicate the things that we had to say. And so its tricky, and yeah.

No it is tricky and I think that’s the beauty of- I mean I come from the perspective of being school based I work with preschoolers so I work very closely with families and being a part of this collaborative team. And its always my goal, is to work hand and hand with the parents, not be, the professional that knows how to set the environment up but rather tell the parents, like “whats going on?” and show them the environment and things like that. So I think that just coming from a place of understanding, “this is going to be tricky for all of us, were going to learn together.”

Its funny I was going back in the comments and Lindsey from help me grow speech said, back in talking about identity first and person first language she said, “im in the same boat, I also feel like with preschoolers that parents aren’t always on the same page with the language that were using, so we go back and forth”  and you know we talked about that sort of like we want to make sure that were being respectful, that were, we want to provide the best environment that we can for their communication.

I think its best to just disclose upfront, like I know at every IEP or IFSP meeting that I have led in the past I like to give a brief little “alright this is what were doing…” right. And I think when you’re talking about autism if its already established its always good to point out with new families or at the start of a meeting if a new professional is on the team that day that hasn’t been there in the past, and clarify just “okay sometimes we might say autistic, we might say with autism or on the spectrum, we’ve all been switching back and forth” or if there’s a general preference let that be known for that meeting.                                                               And preface it because nobodys supposed to just know that like, its unspoken because it needs to be discussed. Like we don’t know, people don’t know? Then talk about it.

Yeah, and you know we start every meeting with an introduction, we always state, the very first thing you do, or are supposed to do is state the purpose of the meeting and you talk about the child, you say their name, and you talk about they really love doing this and that and I think that would also be the perfect time to say oh and we use identity first language with “johnny” da-da-da-. Because then you go through the meeting and you’ve created this environment. You know I’m all about making sure were not talking about this on paper were talking about an actual child or actual individual. And so when we can pull all of those factors into what-

And if theyre there are they going to hear what youre saying. Something that I think is really important, especially with autism, I think people overlook that piece a lot.

Mhmmm

Especially as an autistic person watching a lot of videos about autism in this past two weeks, I feel like we as SLPs and I mean us all as humans we get into our own brain and we forget, hey our patient might read this report one day when their 30 and looking through their parents stuff or maybe they just have that natural ability already and the team isn’t crediting them for that understanding and for those skills. So its important to just always assume the highest cognitive level that you can until you’re proven otherwise.

Yeah, well I love that, I think that is such a good- its just such a good reminder. It’s a good reminder to remember what our responsibility is in these, you know its being a part of a team for an individual with any identified needs. We need to be sure were presenting them and representing them in the way that they want to be represented.

Yeah, and I think its just everybody, but also as speech paths being the communication people its good to remind everyone that we can change the language that we use and that doesn’t discredit anything. You can change your mind about how you wanna talk about it or how you want to be identified and that doesn’t discredit anything its just like “alright, we switched it? moving on, cool”

Lindsey just commented again, she said “so true, its good to just set the tone”. And especially for early intervention and prescghool SLPs, I didn’t realize it my first year, but I now understand it and the role that our IEP team has for these families. what tone its setting for the next, I mean at least 3yrs, because that’s how long the child will most likely stay on the IEP you know until they have to get re evaluated. It’s the first experience with that kind of a team with a public school and being in a certain classroom, and having a certain classroom designation and all these different things and theres all this new terminology. So setting that tone and being there for the child, and this being part of that, is very essential. That’s my soap box, im always on that one.

[Me fumbling over my words and notes]

I don’t know- we probably wont go into this whole thing today, maybe at a later date but, one of the main questions I got was how to talk to a teacher who has ABA or some one who has an ABA therapist who comes into your classroom and how to handle that and like things around ABA.

So I will preface, that I, as an autistic human, as a speech path like long before I knew I was autistic, I never felt good about the ABA that I saw in the classrooms and the set ups that I heard and the schedules that I was informed about. I just had this like intangible icky feeling about it like mmmmm I don’t- Im just going to stay away from that, like im going to do what my specific role is and kind of just let it go. And in the last chunk of months I have obviously been doing a lot more research and ive got a lot more understanding and learned so much more about it. And so before I answer like how to talk to an ABA therapist or whoever I just want to preface that im against ABA as it started like how it was founded and the origins of it and all of that. I think that- or I know- that people who are ABA providers are humans trying to do better they’re trying to learn they’re trying to help they’re trying to educate, I don’t have anything against those humans or the families who benefit from it or enjoy it, like I said, “to each their own”, were all different people with different circumstances, however I don’t support it at all.

I feel like that’s an important thing to make clear, because in both sides, like in the autism community and in the educational/speechpath community I think that there’s just a lot of controversy.

There is a huge amount of controversy, and ive talked with a couple of BCBA behavioral tech people, you know I work with behavioral techs and BCBAs all the time.

and I worked in a behavioral psych lab in grad school for a while, im familiar with it and its not like its just horribly bad people its-

no but I do think there is the controversy its this stigma on both ends, I think Ive had my run in with behavior therapists I guess for lack of a better term, but ive had my toes stepped on ive gotten my ego bruised before but ive also, I will say had very good collaborative relationships with other behavioral therapists and those behavioral tehrapists come more along with the developmental approach that I do and were working on the communication together its not really an external reinforcement set up. So ive had a lot of different experiences. But I do think like you said there is a lot of controversy. In grad school I was very against ABA, ive kind of come around a little bit more to not necessarily ABA but more working with behavior techs and things like that to collaborate.

Yeah I don’t think its fair to completely discredit the field of behavioral psychology as a whole. I just think that the way that ABA therapy is used in autism is a — so I think that ABA comes into play, — im trying to say this without being obnoxious but obviously theres a lot of trauma in this for the autism community and things but— ABA exists, or rather would not exisit, if people communicated and learned to communicate and got down on people’s level and learned about autism and celebrated neurodiversity and learned more about childhood development [visual kitty interruption on screen], and all of those things, like if families and educators had approaches that you learn in Collaborative Problem Solving, in Hannen, in what it sounds like they use in Floor time and in Play Project. If those types of things were present from the start with early intervention and understanding, it wouldn’t exist. There wouldn’t be those “problem kids” and those “problem behaviors” and the need for these strict rigid things because we would have a relationship and an understanding with those individuals. And I think that it honestly for a million reasons is detrimental, but I think that a point that I don’t always hear people make is that yeah it trains, you know it trains autistic people to “be neurotypical” and then they get out into the world and they don’t have the supports and the things that they need so their “fake neurotypical” and have these nonexistent skills that they have this motor memory for and these weird scripted things all fall apart and lead to a worse catastrophe. if we would understand the humans that are in front of us, rather than guess about how functional their brains might be in ten years, then we would not have had this [ABA].

Yeah, im right there with you ally. When I was in grad school, the reason I became a speech pathologist was because I worked with- I think he was in 6th grade- same thing I didn’t know what an SLP was, I was just getting my community service hours for my course in communications you know. And I was working in a special education classroom, with a little boy who after, after the semester I learned was autistic, they didn’t tell me before, but I just built this great relationship with him and one of my favorite things about how he communicated, was that he brought me into his world. It was never about me trying to get him to do things the way I was or I wanted, and so when i decided to go into the field of speech pathology I always had him in my mind, and when I was in autism clinic, that was always my goal, what can I learn about my client. Not what can I teach them about how to function, what can I learn about how hes communicating and my professor for that clinic was amazing. She was Hannen certified and taught us all Hannen stuff, so I totally agree I think that trying to train anybody that has this- we say neurodiversity- because it’s a diversity and its beautiful and it adds to our community.

It’s a neurotype, [me stubling for words], one analogy I heard in a ted talk once was its like having; an autistic brain and a neurotypical brain, its like a playstation and an xbox, like were just doin it a little different, like were still doing the same things. And honestly that’s what it is, it’s a neuro type, neuro diversity, like our brains are diverse in their function obviously like why would we expect anything different right? Like were all individual humans so yeah its just a neurotype, it’s a positive thing, it’s a great thing, theres so much about me that comes from autism and my characteristics or my traits of autism.

A lot of actually autistic people, myself included, don’t love “symptoms of autism” those types of phrasings can be triggering for some people in that they are really connected with the medical deficit models and ABA conversion therapy type models. I like to try to say characteristics or traits but um obviously working in our field we all say a million words everyday. So yeah it’s a positive thing and im just as much of a normal human as any other human, and that’s what I hope to find a way to communicate to my families that ill be working with. I had a lot of zoom meetings today with our evaluation team because since I joined my districts school year kind of mid year im doing a lot of evals to help catch up. And of course the most evals we have to catch up on are autism evals, so we talked a lot about that stuff today and im really trying to figure out what I wanna do. Obviously the rapport and working relationship with each family will be different and each child at each eval but I want to find a way to- and maybe its just a little snippet or a letter to give to families in their packets and be like this is a grieving process theres a lot to go on but heres just a little glimpse like this is a positive thing and you just a little reminder, but it’s a hard personal/professional line to cross and its hard considering like I am not all autistic people, I am just one person and I don’t represent a lot of different populations of people and there are a lot of marginalized people out there who have different perspectives. And so finding a way to communicate to my families my perspective and my understanding of these different communities without stepping on anyone’s toes and telling them how to perceive things, how to grieve, how to process, how to teach their children, it’s a tricky thing but that’s why im trying to be as vocal as I can be, like on social media and with my colleagues, and stuff to really navigate how to make this better.

Yeah and I think you’re starting at a great point where you can have the support of social media, and a community and your colleagues, and I think as vocal as you continue to be and continue to grow because I know you do a lot of research and you’re so invested in figuring out how to bridge those gaps and that’s amazing. So you will, you’ll build that rapport with your families and I’m very excited for your little students that youre evaluating because they’re very lucky to have you. Its amazing to be able to have that passion but also to have that personal connection with them, I think that’s going to be really beneficial for them. And I can’t wait to hear how you learn and navigate through it, I think you’ll be really successful.

Thank you. I mean ive said it before in the podcast episode that I did the Thoughty Auti podcast on spoitify with Thomas (@aspergersgrowth) I said and I think about this all the time, I just can not stop talking right, like we go to school and we get all these degrees in talking and then we go to work and we just talk talk talk so im like well I might as well do something with it if I cant shut up, so yeah,

Good for you, well I don’t think we had any more questions, serena from play sparks toys is here and she said “sorry im late”  its all good serena we forgive you. But I feel like I thought of something and I totally forgot what It was now, was there anything else you wanted to make sure we talked about right now?

I feel like we talked about the main things people, the people I talked to, wanted me to share, and that I thought were super important. I think that we’ve got a good start for future chats.

[Marie and Ally chat a little more about recording a podcast episode on the following Saturday, see her account on insta (@thanksmorris) to find her links! She then brings up Sia and recent events; Ally’s dogs cause another interruption, then resumed transcription below]

so yeah, she- ill preface this with saying that im not a person that believes in cancel culture, like people are all doing the best we can, were all trying to learn better, be better, if theres something they did wrong you know theres a skill we were lacking or we didn’t know, nobody wakes up and decides “im going to go be a dick today” but that being said, she has supposedly spent 4-5 yrs on this project called music, and I think one of the figures I saw was an absurd amount of money, hundreds of thousands of dollars, on this movie and the main character is an autistic girl and its played by maddy zeigler, I should know how to say her last name because honestly I watched dance moms when it first came out because my sister loved it, anyways, she was cast as the main role and the way that she supposedly learned about autism to prepare for this role was really just through these traumatic meltdown videos that people and parents have posted of autistic people while theyre having meltdowns while theyre having sensory overload and going through traumatic experiences and learning not in a good way, so the way that they have told the community what they did and what they researched there didn’t appear to be any direct research with an actually autistic person and theres different tweets and different things of “hey I told you this a few years ago” and anyways, she was working with autism speaks but then they said that she wasn’t [Sia], and we don’t really know, but basically shes created this problematic film in that she denied the opportunity for an autistic individual to play the part.

And she [Sia] gave a handful of reasons about that and gave a lot of responses to autistic and a lot of other disabled people on social media that were not professional, to say the least.  Theres a lot to it, I have a lot of posts in one of my highlights, I think in the one called ‘ableism’ of a lot of the actually autistic community’s posts about it. So yeah I think that its just important to be aware of those things in that nobody in pop culture like nobody as like a mainstream celebrity has come out and said hey we support autistic people we support the disabled community. It’s a film for neurotypical people and its done by neurotypical people, its not something that we stand by as a solid representation and it also represents systemic discrimination and problematic stuff. So, I took her off my spotify but Im not gonna you know be mad at anyone who keeps her on there.

And im gald I can hear it from you because when we started talking about it I didn’t, this is me in my bubble, and I don’t pay attention to pop like pop culture stuff very much, I think because, I blame work a lot but its true. So when its brought to my attention and its obivously a community I work very closely with and families I work closely with and even if its not families but like you guys on here and everything. Im glad that youre speaking uo abd helping us learn like whats behind all of this, its not just being upset that somebody without autism is playing with somebody with autism its like a whole backstory.

Theres a whole history and this systemic issue that I think its just, its everywhere, and people don’t know about it because people don’t talk about it because they just don’t know, like I only knew about what was going on with Sia and everything because I follow a million hashtags related to autism and now that ive been more active on social media most of the accounts and people that I interact with on a daily basis are people in the neurodiversity community. Its easy for us all to get into our own little bubble of who we talk to and who we follow and what our interests are and just be blatantly unaware of things that are important.

Yeah, and are happening, you know without even in my case, without me really knowing. So I’m all about making sure that we are understanding of what’s going on in our communities so thank you.

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