The Autistic OT, with Sarah Selvaggi Hernandez | Spectrumly Speaking ep. 109
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IN THIS WEEK’S EPISODE:
(AUDIO – 53 minutes) In this episode, hosts Haley Moss and Dr. Lori Butts welcome Sarah Selvaggi Hernandez. Sarah is an autistic author, educator, occupational therapist, and international speaker. She was also the first openly autistic person elected to serve in a government position in the United States. Sarah is passionate about occupational science, sensory processing, and autistic identity. Her vision remains centered on the creation of identity-affirming autistic contexts to support neurodivergent development. She runs the popular social media site The Autistic OT.
For more about Sarah, visit: https://www.facebook.com/theautisticOT
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com
Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com
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EPISODE TRANSCRIPTION:
HALEY MOSS (HM):
Hello and welcome to Spectrumly Speaking. I’m Hayley Moss, an attorney and author and artist and I’m autistic. Today I’m joined here by my co host — the one and only.
DR LORI BUTTS (LB):
You’re so cute. Dr. Lori Butts. I’m a psychologist and an attorney.
HM:
How are things going with you?
LB:
Great. How are things going with you?
HM:
I feel like I’m finally able to see the light at the end of the tunnel here.
LB:
Excellent.
HM:
I think as far as this whole, like, virus thing like that. Like, oh my God, I see this, like, hint of normalcy slowly on the horizon.
LB:
And what would that mean for you, though?
HM:
I’m not 100% sure, but it means that I think hopefully, I’ll be a little bit less afraid to go to the grocery store.
LB:
Yeah, yeah, exactly.
HM:
That’s kind of my bellwether at this point.
LB:
Yeah, exactly.
HM:
Yeah, I’m waiting on my second dose. So so far, so good on that, that front. Great. So that’s why like, I could see that on the horizon of Okay, I’ll be less afraid to go to the grocery store.
LB:
Yeah, that’s a biggie. That’s a biggie. And what about your book?
HM:
So far: updates are everybody’s in copy, edit. So I have two books coming out in the next hopefully, year, whatever it is, I don’t know the exact timing on the second one. The first one is, hopefully this summer, I would like to have more information I approved cover designs in the last couple days. I think I don’t even know what date is anymore. Somehow it’s March something. It is fun looking at all these different, like things that the graphic designers put together. And then it’s weird when you have edits for them. And you’re like, yeah, I’m just gonna figure out how to edit this myself to show you what I want to do. And it’s not something they’re used to seeing.
LB:
Right? Because you’re artistic. I mean, you’re an artist. So it’s got to be…
HM:
And it also helps it I have friends and family that are actually graphic designers and whatnot that I’m like, “Hey, can you help me make a better looking mock up?” Because I want it to be this color because they use like a blue and I’m like, I’d rather it be like a gradient or something else. So hopefully, that’s what gets approved as the final cover for the book coming out this summer.
LB:
Really exciting.
HM:
That’s kind of the excitement around here. Everything else I think has been kind of slow just waiting for that, like return and just kind of slogging through this weird existence. What about you?
LB:
Yeah, it’s all moving in the right direction. You know, same same old, same old plugging along.
HM:
It’s been quite a year.
LB:
Yes, it has is it has. But yes, I think I think the future is starting to look up. I think there’s positivity on the horizon. So it’s, it’s good.
HM:
Exactly. And one thing that has always been positive, at least for me, has been getting to hang out with you and getting to do spectrally. Speaking, it’s always been kind of a mainstay of my routine. And it’s something that I extremely appreciate that we get to do. And I think it’s helped keep me grounded in a sense, too.
LB:
I agree. And we’ve got been able to talk to so many wonderful people all around the world. And it’s just, it’s just been so much fun.
HM:
I learned something new every time we talk, man every time we get somebody new. So that’s the best part of it. Yep. And I hope that our listeners are learning along with us because I know I have taken stuff that I’ve learned from here out into the real world or have talked about it with friends and family and colleagues and been like, “Hey, you know, this is something that we might not have been thinking about. Or maybe we’re just thinking about it wrong. And I learned about it from this very insightful person.”
LB:
Exactly. I’ve done the same same every week, I learned something. Something someone says it’s I hadn’t thought of and it’s it’s great. It’s really been a wonderful experience.
HM:
Not to put any pressure on today’s guest. I know that I learned from her no matter what. So I’m excited for us to keep learning from her. So our guest today is Sarah Selvaggi Hernandez. Sarah is an autistic author, educator, occupational therapist and international speaker. She was also the first openly autistic person elected to serve in a government position in the United States. Sarah is passionate about occupational science, sensory processing and artistic identity. Her vision remains centered on the creation of identity affirming autistic contexts to support neuro divergent development. She runs the popular social media site The Autistic OT. Welcome to the show.
SARAH SELVAGGI HERNANDEZ (SSH):
Thank you so much, Dr. Butts and thank you, Haley. I’m thrilled to be here.
LB:
We’re thrilled to have you.
HM:
We’re thrilled to have you. Jynx! We’re on the same wavelength today for sure.
LB:
Yeah.
SSH:
Yeah, absolutely. No, I was listening to you, and I’m getting my first jab on Sunday. So I similarly feel and you know, I don’t know if it’s a trend, I’m definitely feel the transitions of seasons. Um, so you know, the transition of seasons here. But I am looking forward, really to just connecting in all the ways that we are able to connect, and this year has had that fractured and I’m so excited to be able to start connecting with people again, and maybe even Oh, my gosh, I don’t I love it here in Connecticut, but I’m a little bit ready to travel.
HM:
I mean, it would be nice. If we’re in Florida, it would be nice to see seasons again.
SSH:
That’s right. That’s right. Because you — Well, your seasons are just beautiful, beautiful, and then beautiful their.
HM:
And raining. Don’t forget the raining season.
SSH:
Oh, you know– The funny thing for me was so I, Haley. Dr. Butts. I don’t know if you know this, but I actually am amongst the many things I’m doing, I’m a PhD student as well.
LB:
Oh, wow.
SSH:
Yeah. And I am going to Nova Southeastern. And so “I have to”, and I’m doing that in quotes, go to Fort Lauderdale every now and again for school. And so I will admit that the weather, and the location was a huge part of that. So it was it was here or with you all in South Florida or Utah. And I’m like, I think Utah gets more snow than me.
HM:
Yeah. Probably.
SSH:
Yeah. So. And also they had a wonderful program.
HM:
That’s exciting.
SSH:
I’m three classes away. The focus is artistic identity. So I’m really, really excited. Lots of people are coming out. And just really appreciate the ability to be here and talk about it. Absolutely. Yeah, I don’t often get a chance to talk about some of the things I’m doing outside of the context of social media. So thank you.
HM:
Totally. And I think that’s a great place to start. Because we always want to know how people became involved in this work in the first place. So how did you become involved in the autism community?
SSH:
Okay, wow, that’s…
HM:
That’s kind of that’s kind of a broad question. We always like to start with that.
SSH:
It is. You know, it is and it isn’t, because one of the best things about artistic identity and especially for someone like me, who was late diagnosed. My son was educationally identified as being autistic. And I was actually in school for occupational therapy at the time. So I was like, I said to his teacher, I’m like, you know, at that time, I wasn’t even using identity for affirming language. So I’m like, “if he was on the autism spectrum, I would know, I’m an OT school”. But then, you know, what I continued to learn was that there’s a lot of misunderstanding about what the spectrum is, and also the difference between being diagnosed and embracing culture. And that’s really been for the past decade, where I’ve been opening up my understanding. And one of the things that’s been really neat is that as I open up my understanding of my interactions over the past decade, I look back into my childhood, my year, my 20s, my teen years and say, Oh, my gosh, you are so artistic. And because I think I have the background that I do I understand how important it is to take that word, take that identity and create my own definition for it. Because my internalized scripts unfortunately are, you know, filled with bias. I will openly admit my internalized ableism, but I consider it almost a challenge… Not a challenge — a pleasure to challenge those things. I’m pretty sassy. I think that we all have that in common.
HM:
I love it, though.
SSH:
Yeah, so that’s where, you know, so 10 years ago, my son was educationally identified and then I started to really research because I was I was actually upset with myself. I noticed my ableism already, like what, like, I went straight to the, you know, deficit model, diagnostic criteria criteria. And then they said, Whoa, this is my son, and, um, I know my son. And so that was really the beginning for me, um, being specifically in the autism community. And then, really, I started my advocacy, openly, about two years ago on social media. Three years ago, I was elected. And it was really important for me to talk about being autistic, because it just wasn’t being talked about. And it’s really, like, our brains are so cool. And it’s really important to talk about not from a deficit based Oh, look what you done, or how can you ya know, like inspiration, but like, I have a really hacking cool brain, and I think in a different way. And my presence here is not just important, but it’s critical. Yeah, it’s been an eclectic experience for me.
LB:
Yeah. Tell us tell us a bit about your advocacy work?
SSH:
Sure. So, um, well, as you know, I’m an occupational therapist. You know, previous to social media, in my work, professionally, and personally, we are therapeutic foster parents, and we have been for almost my husband and I have been for about 15 years 16. So it’s, it’s blurring. But the past six, seven years, we’ve been exclusively a foster family for children who have been identified as autistic. And usually they’re not speaking. So we have a lot of friends who come to be with us, and I am so super proud to say that we actually have 100% reunification rate with the biological families. Because what I’ve noticed is that a lot of times in the foster system, especially when you get somebody who is nonspeaking and autistic, there’s so many intersections that make the family as a unit overwhelmed. And if I can pull apart the clouds and kind of say, like, Hey, this is actually what autism is, I’m I’m very, very close with all my parents, which is very atypical. But for me, in my head, we’re a team. And if the goal is to the goal is always to preserve the family if it’s safe to do so. And if that’s the goal, that’s what we’re doing. And so I work really hard with the family. And I preserve those, those relationships. We still do respite for pretty much all of our kids. They come over for the weekend, like just for fun. Which is really — I I chuckle but it’s atypical, and I don’t want to not mentioned that the system itself has a lot of systemic issues
LB:
A lot.
SSH:
So it’s almost like I don’t know if, if I feel like I find spaces to go in and rebel. And like, shake it up like this is, you know, I can see where the kinks are, and the problems are and I can help. And, yeah, and I, that’s because I’m autistic. So that’s, yeah, that’s advocacy work. Then I became an occupational therapist, and primarily a mental health. OT, people typically think that I work, you know, in school systems, which I definitely have for many years, but as an OT, my GM, as men is at Well, this is what I say, pediatrics is my jam, and mental health is my jelly. And when you marry those two things, it’s so it’s just amazing. And that’s what I’ve been doing. That’s what I hope to bring with my social media. Um, I really want to I don’t know, I just want to change the way that we’re thinking about what an autistic brain is and how we support its development at a whole body level.
LB:
How does that– like, I don’t even know the right question. What do you do? What do you like with a patient? What What do you? How do you apply your skills? Just kind of give me an example of what what you do.
SSH:
As an occupational therapist, when I’m working, I work with a lot of different populations. So primarily, it seems there’s a lot of intersection, especially with adults, so artistic adults in mental health. And so what I’ve been doing for many years, and I’m really focusing on now, specifically in the autistic population, is really, there’s assessments to help people understand the ways that they process sensory information. And that’s called a sensory profile. And sensory processing, as a model of understanding is really complex. Like, it’s really hard to explain, but it’s one of those things that when you get it, your brain will click into sensory and everything becomes that experience, because we are sensory beings. And then with specifically with autism, and people who are autistic, they have a fractured relationship with what’s going on inside of their bodies, we call this interoception. It could be interoception. Another thing that you might hear of an issue in the autistic community community is something called alexithymia. Which is just a difficult time understanding your emotions. Through my research, what I’ve understood is a lot of the reasons why we have a difficult time understanding our sensory needs, the way our body interprets that sensory if even that we can trust what it is that we are feeling. All of those are actually skills that are really groomed out of people on the spectrum, because we have an experience, but it’s so much more intense than other people. And it takes a lot, it takes vulnerability on our part to express that different experience. It also takes the vulnerability on the receiving end, the other person to believe us. And unfortunately, what I’ve seen is there’s a lot of disbelief out there, that we are experiencing these things in the way that we say that we are experiencing them. And when you’re a kid… kids that manifests as like, either isolate, like, they’re the shy kid and they are maybe feel a little bit disconnected. Or it could be the kid who’s gregarious and just really just puts everything into social connection, etc. But what that ends up what ends up happening. Sorry getting all excited…
HM:
Look, I love nothing more than a good info dump. So I’m here for it.
SSH:
Ok yay!
HM:
I was like sitting here like… my only question was: wait, when we were talking about in Taro section. Is that why I also don’t realize when I’m full half the time?
SSH:
Yes. Yeah. So interoception is, again, a really huge thing. And terrorism covers, like how we feel inside of our bodies from maybe if you feel like you’re full, or if you feel like you have to go to the bathroom on pain. If you feel like you’re, oh, I’ll give you a great example. If I am hungry, I don’t notice it until I become what’s known as hangry. And that’s because I really have a difficult time even acknowledging that my belly is a thing. I don’t feel it. Until it’s like screaming at me. And then it’s like, I really do need a cracker.
HM:
I feel this in my soul.
SSH:
Yeah.
HM:
I always forget to eat and I’m always like, but I don’t think I’m hungry. And then it’s like, it has to be screaming at me. And then I will eat until the fact that I feel physically sick because I don’t realize, like, I’m full.
SSH:
So that is really common in people who have been diagnosed with autism spectrum, every time I say that, I’m like, well, but you know, if you’re out to say, you know, this, I experience it with continence. I don’t know that I have to go to the bathroom until it’s like, ah, like, you better go!
HM:
You’re like gonna like explode.
SSH:
Yeah, and that is what’s known as having, um, or a really like, yeah, it can be I love the idea, all these different things, but what it really means is that we have to really learn like why Our cues like and believe ourselves, that’s hard. That’s to be vulnerable with yourself and to say, Okay, I need to relearn how my body is speaking to me. And then also acknowledge that the things around me are also interacting with my body. And you know, it’s so big, but it’s also so powerful to say, this is just my threshold I need to, for me, I need to schedule and make sure every hour that I go to the bathroom, no shame, no judgement, nothing, I just literally don’t feel it. And when you can take the shame and the judgment, understand that this is a real neurological experience. Why would anybody attaching to it. And so I find, the more people understand their bodies, that is actually the gateway to advocacy, to know yourself, and to understand yourself. And once you do that, you can advocate for yourself. And once you do that, then the world like you, you become such a strong advocate for others, because you know how important it is, and how real it is for you to not know that you’re hungry, and all of a sudden, you’re getting a little snippy. And all you really need is a drink, and a snack. And that I think a lot of times people on the spectrum get told a lot, especially about our personalities. And the reality like, No, I’m just hungry. So I guess…
LB:
Not to not to get in the weeds so much. But how do you how do you help a child identify that within themselves through OT?
SSH:
You know, that’s a really interesting question. Because I think it’s not even specific to OT, it’s specific to any rehab therapy, I’m sure in, you know, your professional fields. But we go to the parents a lot. And that’s actually another thing. That’s another thing that I’m trying to stop. Because we really need to number one, like get rid of ageism, like children are autonomous beings and have a right to agency. And they are perfect, precious and special. Right as they are. We’re there to support, you know, whatever the end goal is, and that’s occupation, occupational therapy. But I’m not there to change you. And I think that, um, where I differ from a lot of other OTs is that I really don’t listen to the parents very much. I listen to the kid. And when I talk to the parents, I’m like, you know what, I might need to do the sensory profile without you. Because parents have a lot of things that are going on in their lives. And oftentimes one of the top things an anxious person will do is control another person. Easiest person to control in our society is your child. So I’m here to say, none of that, let’s talk to your kid, I will then do more of a observational assessment. I’m looking at behaviors or expressions. Behavior is communication, and tells me so much about you know, and then we just start from there. And just really validating, validating, validating experiences, and always giving a choice of when to stop. When it gets done. They’re done. If they don’t want to do if they don’t want to do it. That’s my responsibility to make it more fun. Not you have to come in and do what I say like that’s so weird. I don’t know why people do that. YOh, it’s so fun.
HM:
You’re such a strong advocate for the kids that you work with. And I know that also i, from what I understand you served on the school board. And can you tell us a little bit about your experience with being the first openly autistic person elected to serve in government? I think that’s absolutely fascinating. And I see that your advocacy just really shines through in everything you do.
SSH:
Thank you. Yeah, no, it was really just the whole experience itself has been an interesting one. And when I came onto the school board, I was just humbled. I’m really like I’ve worked on the education system before but to see the all the work and all the thought that goes into the process. It humbled me and actually really inspired me to let more people know that you can run for your local government and you should. Because you have insight that’s really important. And government is, you know, supposed to be representative of the people and the people is you. And who better to represent you, then you. Um, but that so I actually got into the whole situation because I realized that nobody on my school board and this is not a judgment just back back back. Nobody on my school board had any pediatric experience. And I’m like, How the heck are we on this whole board? Like, let’s, let’s really, um, you should have people who have this strong experience. And so that’s why I ran.
And on the school board itself, one thing that I love about being autistic is I’m a rules stickler, like, I can see if it’s a rule if it’s a protocol, and we’ve got to make sure that we’re following it, if we cannot follow it, we need to make sure that we update and correct the rule. And so that’s something I’m really good at. Because, again, I don’t have any ego attached to a rule. I don’t have political party attached to a rule, I just know that we need to make sure that we’re creating, affirming and developmentally encouraging spaces for all children. So when I got on the school board, that’s, that’s what I did first, and that really just to exist, um, and to be able to bring my experience and expertise, I had the opportunity to serve on the curriculum committee, which was my favorite. I love curriculum, I love context, I love the way that we set up an environment to engage our, our students. And so that was really amazing to see. And I’ve never, like just, I’ve always worked in a, like, as a paraprofessional, before I was an OT. I just love the teachers. I don’t know, like, I just, it was a really positive experience for many reasons. Um, it was also a challenging experience. There’s, I keep, I don’t think that a lot of people know that, um, oh, well, they should know — elected officials and volunteer positions are protected by the ADA. So getting accommodations was not the best. And I’m currently in a lawsuit with my town over that. Um, but it is very uncomfortable.
However, Haley, as you know, when we attach this “first openly”, you know, all these things. I considered that not as like a spotlight, but as a responsibility. Because I knew I was in a space that know that people had been there before me. And they weren’t able to talk openly about their diagnoses or the way they were experiencing things. So I came in and said, “No, we all have a right to be here. I’m gonna say I’m autistic, I’m autistic, I’m autistic” a million times, not for spotlight, but just to really reinforce that we, like representative government includes all people. And so that was, I almost took it in my head, like, I really need to make sure that this is accessible. And I found a lot of places where it wasn’t accessible. And that’s, it’s To me, it’s not a judgment, it is a Okay, if this is the facts, we’re gonna fix this fact. And we’re gonna fix this because I really do believe my, my dad gave me a pocket constitution. I really do believe in in, you know, the way in systems. However, I don’t understand why we don’t more as a society more proactively say, Okay, this isn’t working. Let’s just tear it to the ground and do something different. Like, I don’t know.
HM:
It’s frustrating.
SSH:
It is there because it’s not it’s not personal. It’s not anything like… so when I found there is a very… when I found this barrier. Yeah, I knew that I had to go for it but the lawsuit, and I am and it’s been a very, it’s a brain heavy experience. But it’s important because nobody should encounter These barriers again. And that’s so that’s why I tell my sorry, and they do what I do.
HM:
You do it, you’re fighting the good fight.
SSH:
Yeah.,
HM:
That is kind of the best way to describe it. And I think you were really hitting on something with me when you’re said about how to responsibility when we are taking up the space, and people are kind of like celebrating that you’re an autistic person in that space. I feel like there’s always a lot of pressure to do a good job in that.
SSH:
There’s a lot of pressure. And there’s but it was, for me, it was almost like a… Hmm, like, sorry, my dad’s military. So I always go back to military things. But like boot camp for identity. I had to make a decision personally, was I going to continue on in ways that I knew were deleterious to my health, meaning masking, all the you know, trying to, to accommodate other people, when really I need an accomidation. I had to say to myself, I’m in a position of responsibility, and I can’t like it was, it was so uncomfortable, it still is very uncomfortable. Um, but I keep my vision on community, everything is for community for me. And I know that this will help my community, I’ve seen so many more people, if they’re running, that are open about being autistic, we have people elected, we’ve had people who were elected that came out and said, Hey, I’m also autistic. So it’s, it’s so cool to be a part of the change, and it makes, it helps me in these moments when you know, my pockets are empty. You from this is expensive, I didn’t really realize that, um, it’s really expensive, it’s a lot of hard work. And it’s a lot of hard. It’s hard for an autistic brain, um, for my brain. But that’s okay. I deserve accommodations, and so does everybody else. So we’re gonna get that fixed. And I think that even just the the knowledge of it, um, if people do need accommodations, they know, and they’re elected to an open position, they can go and advocate for those right away.
HM:
I think that’s really important to know. And I, I feel like it’s just something that doesn’t get talked about as we only hear about accommodations, like, okay, it’s in like this very public space, or if it’s, you’re an employee, or it isn’t like title to with things, government, but we don’t think about volunteers and elected officials as much. So I think that’s a really interesting space.
SSH:
It’s such an interesting space. And what I do know about autistics, is we thrive when we have a system set up to support it. So that’s, that’s my mission. Really, it’s like, again, it’s not about me, it’s not, um, it’s really just to continue to push forward and create more supportive spaces so that other people can just come in and do their job. Just do it, you, you know, are were elected or hired to do. Um, the other thing that I found really interesting was all of the information that I was giving, and I’ll preface by saying, I don’t like when people pit visible versus invisible disabilities. But people were more understanding and even like, the paperwork that I would get for accommodation would always have physical, like, physical accommodations. And I’m like “y’all autistic, and I’m deaf, this, this list is nothing for me”. Um, and so that was actually an interesting part, too, is just even the paperwork that they give you, makes you feel like you’re asking for something special. And you’re not. You are entitled to accommodations to but you know, that allow you to do the job that you choose to do. Yeah.
HM:
I also feel like you have to almost like focus on your deficits almost exclusively to get anything to, which always could be frustrating. Like, there was a really interesting piece. I read about it the other day. And it’s like, even with special education, like you have to focus so much on what the kid struggles with to get anything and not even just like, it’s almost like ignoring the potential and the good thing. So it’s difficult that we have to focus on these things or it’s very everything’s physically based or how a parent disability seems to be to enable the person who just doesn’t know what they’re looking at. Something that we were also thinking about is what are some services that you think because you’re both autistic and you’re an OT that you think that other autistic people can benefit from the aren’t usually available? So there’s all sorts of like cool stuff that I know that you’re working on. And it’s just, yeah, so I think you have great answers to everything.
SSH:
So Well, thank you, first of all, thank you for that compliment. And the biggest thing that I really want from so as an occupational therapist, um, I know that we can do so much more to support the clients and the populations that we serve. So some of the services obviously, when sensory processing on there, I really strongly believe, and it’s sensory processing is wonderful for so many populations, I’m focusing on autistic neurology, because we do experience sensory, more intensely, per the literature. Um, and so I really want to get that information out. My biggest challenge is I’m not, I don’t want to compromise on the words I use. And I recognize that their jargon, and jargon is a systemic barrier. So then it becomes my responsibility to really explain that in a way that’s accessible. I’ve been working, working working, I want more OTs to do that. Right now, sensory in some spaces is seen even just as a support to get kids ready to go to their ABA sessions. And I’m like, What the heck? I don’t want it that’s just not how I’m using sensory. Um, and there’s, it’s sensory is being used I see in the field, almost to get children specifically but adults do, but children specifically to do things they don’t want to do. And that is really confusing for me, why would I ever force a kid to do something they don’t want to do. And I’m not using my expertise to force that. So what I want to do is reframe the way that we’re even using therapy modalities. I’m not trying to get you something to do something that you don’t want to do, that’s something that is uncomfortable for your body, if wearing that if a tags are uncomfortable for your body. That’s, that’s it, period. Um, so I do a lot of work with OTs, because we are trained to be in a hierarchy. As an I know, as an OT, I know more than my patient. That is not true. My patient knows more about themselves than I ever well. And so I’m really reframing that the other thing that I really, oh my gosh, if I could somehow find a way to advocate for this. There are no supports and services for autistic adults, it is a huge issue.
HM:
Oh my god, you’re right, because everything is just about like children,
SSH:
everything. It’s about children. And here’s the thing. I don’t know if you noticed Haley on her guidelines, it’s actually not a national, I thought it was just Connecticut and Massachusetts, I was actually hoping that we you know, it wasn’t it was an isolated issue. But nationally, if you are not diagnosed and received and currently receiving services, by your 18th birthday, you are not eligible for adult services under an autism diagnosis. Whoa, whoa, because who’s left out? My girl, it’s my women, marginalized populations, queer people, um, you know, lower socio-…
HM:
Exactly. People of color who might not get a diagnosis right away, like all sorts of people that obviously get missed because the diagnostic criteria, especially with what we look for in kids mostly focuses on like little white boys.
SSH:
Yes. And that’s the night that it’s, you’re absolutely right. You’re absolutely right. And the thing is that people are like, I hear a lot of times like so what are so is the diagnosis. What why is it important to get the diagnosis? Well, that’s one of the reasons First, we just need to show, you know, that we’re here. I, I have a tattoo on my arm. Um, and it’s the clover from Horton Hears the hill, and at the top of the little speck, and I don’t know if you know the story, but in the story, there’s people there’s little who’s on this little speck and there, they want to live. And they’re shouting over and over again. We are here. So that’s what my tattoo means. Because we’re here and we need support. Um, I hear a lot like well, then what support can we have? We as OTs, we have a specific thing called “outpatient neurology”. Now typically people who go to outpatient neuro, they get help with doing things that require a lot of executive function, which is the front brain, where we make all those really important decisions about, you know, what we’re going to do for the day, we do things like sequencing like sand, preparing and making the pie. So how, what are all the steps? And what are all the things I do? That per the literature is very difficult for autistic people for very different reasons than somebody who has a stroke or somebody who has a TBI. But they’re the same type of symptoms.
And so what I’m saying is, I really think that it’s appropriate for people who are on the spectrum, specifically adults, to be approved to have what we call outpatient neuro services, which will really help the autistic individual to kind of plan and sequence and make sure it manage all the things that they want to do throughout the day, but do so in a way that is empowering, that is respectful of their neurology and their specific neurology needs. And I could, I don’t see a lot of recognition that autistic brains are different than their typical brains. And I think that this is a place that we could actually make a big difference. But I don’t know who I need to talk to. So that’s my current problem. But currently, there’s nothing, there’s really, if I’m going to see, I’ll tell you where I see. So many autistic people who don’t know they’re autistic is in inpatient, or intensive outpatient mental health services. And I don’t think that’s, that’s not that it doesn’t have to be that way. No shame, no judgment, if people you know, when people get to that place, but a lot of times, it’s just because an autistic person has been suppressed and marginalized, and to the point where they develop mental illnesses, because of these systemic barriers, and this issues, issues issues that we face, just for existing. And it’s, it’s To me, that’s, it’s, um, it’s infuriating, to be honest with you, because that’s a hard recovery, when you’ve been really broken that way, and your brain has been hurt because of that. First, you have to have that recovery, and then you just have to go into being autistic. And that can take years, years. And it doesn’t have to happen if we can just get to the point where we say, hey, autistic people are rad the way they are. And our only job is to support that, right? Yeah.
HM:
I learned so much from you. And I know that everyone else will, too. So can you tell us how we can stay in touch with you and follow you, of course, or at least that everyone else can?
SSH:
Sure. So right now, I’m primarily on social media, Facebook, I really like to live in a space. I’ve pretty much inhabited The Autistic OT on Facebook. But what I’ve been doing, and what I am going to be doing over the next couple of months, is bringing my sensory education to the public. And interestingly, I’m going to be doing I’m it’s going to be old program, very comprehensive. I have actually a student, an OT student, grad student who’s coming to help me as part of fieldwork. But I want I’m going to make that sensory education free of charge.
HM:
Looking forward to it.
SSH:
Yeah. Oh, it’s it’s it’s really important information for you to have. There is not a really good centralized place to get this information. And there’s not a lot of people who understand it from an artistic standpoint. And I know autistic people are marginalized. And so I was in many ways often. So I said, I have to make this accessible. And that means no money. And that’s okay, because I’ll find other ways to make money. But that’s coming up on The Autistic OT. And I’m really excited about it.
HM:
I’m excited for you.
SSH:
Thank you.
HM:
So I think we’ve covered so much ground today and we’re like, I know that we are we have a segment that we do and our segment was going to be discussing them relationship between ot in autism and autistic advocacy. And I’m like, I think Sarah kind of knocked this out of the park.
LB:
I think so too!
HM:
I don’t think there’s anything intelligent that I can contribute to this because usually I think what we think of ot even just like to follow the direction of the kid, like, that’s a new that like that shouldn’t be groundbreaking. But that’s like what I was gonna say like, yeah, we should actually like presumed competence and like, yeah, you already blew this out of the water for me. I have nothing new to add. Anything that I can add would not have been said nearly as articulately as Sarah already put it.
LB:
Right. Me too. Me too. I second that. Wow.
SSH:
(Dog barking) All right. That was my Lady. So I have a dog Lady Caitlin Stark of Winterfell. She’s my first puppy. And it was actually interesting, because that was the reason the barking was the reason I mean, never had a dog on it. It was really funny, because on a sensory level, I knew what to do. So we got Kate. And I was like, for the first two weeks, I was a mess. disregulated every bark was like, oh, produce such a big response. And, but I was like, I know my brain. I know my neurology. I know, brains can change. I know, I want to make this change. So for two weeks, I really worked on myself to understand what her barks were, but that’s really what I needed to do. Um, and at the end, my husband was like, you know, he, I was crying like, I was highly disregulated. He’s like, we don’t have to, you know, this is okay, if it’s not a good fit for you. And I said, No, no, this is the best fit. I know what I’m doing. Leave me alone. Yeah, to me, I knew sensory strategies to do and now she’s my best friend. So yeah, yeah, she’s looking at me and smiling. I can’t take it. We have a wee Yeah. So she’s just very protective of me. And it’s helpful because I am deaf. And so that’s actually relieved a lot of things on my noggin. And now that I don’t have to be so aware of what’s going on around me because I had her.
LB:
Wow, what a gift. And were you working through that? That’s just wonderful.
SSH:
It was something again, and I think that’s so why I mentioned specifically, like, my, it was my consent. It was a hard thing, that I consented to it. And that’s something like with children or even adults, I’m not going to you know, we take away a lot of choices. And that’s actually the opposite. Like, you need more choices, you need more chances to say yes, no, um, to really identify what you want and what you don’t want. Um, and that’s, that’s weird. in society, it’s society is compliance. And I’m paying more choices and that and to be honest with you, that’s how I’ve been able to do my difficult things. I wanted to do them, I consented to it, and developed a strategy for myself, and gave myself a lot of choices. Hmm. And that is not a typical therapy approach.
LB:
Right, right. Yeah. Again, mind opening Sarah, you’ve really, you’re amazing. They’re really,
HM:
I learned so much today.
LB:
I did, too. I did, too.
HM:
Like my brain is gonna have to sit down and process this when we’re done.
LB:
Yes, I agree.
SSH:
Well, I’m glad that you know, I’m really glad for that. And I appreciate it.
HM:
Every time that I’ve talked to you, or every time I read your posts, I learned something but getting to just talk to you for an hour. I’m like, okay, yep. I learned more. I learned so much. And I think it’s just such an engaging format to just learn from somebody that you respect and trust, like, thank you for being you.
SSH:
You, Haley, I love you.
HM:
I love you too!
SSH:
I just wanted– Yeah, no, thank you, Haley. And thank you, Dr. Butts for this you know… The only thing and I’m not this time, but what I want to put out there into the universe. Um, I am stunned and shocked. So going through this the legal process like I have, I feel like the legal process. And this is again, my consent. I’m entering into this. I can’t imagine if it was non consensual, and I was entering into it. I feel like the legal process itself is an assessment for disability. I don’t understand how people now III agree, the question all these things, and if I’m 41 and I know myself and I know my diagnoses, and I’ve had a lot of time to come into my identity and advocate for myself, I’m struggling. Yeah. My, my, oh my goodness, I cannot imagine an 18 year old. Right? No idea that they have, um, you know, maybe something like dyslexia. Yeah, the booking shouldn’t be the assessment. But I don’t know. Yeah, that’s, that’s kind of sad, I think. I mean, that’s an advocacy that I know, needs to be done. I wouldn’t even know how to approach it.
LB:
I’m with you. I’m with it. I’ve been I’ve been saying the same thing for many, many years. And it’s just it’s an overwhelming proposition.
HM:
I think we’re gonna have to have you back so we could just keep unpacking all this stuff.
SSH:
Yeah, no, I’m done for it. I know i tralk, I info-dump, but thank you for listening.
HM:
Always, always. And I know that’s something that is important to us is that we make sure that we are as autistic friendly as possible here. I know at least since I’ve been part of the show that I make a really big point and I know that our producers and Dr. butts know this about me too, is I’m a big stickler for making sure we get autistic people on the show and especially autistic professionals. So having an — THE Autistic OT for that matter, is like the pinnacle of awesome for me.
SSH:
Let me tell you — you know what I’m… so not only am I not the only one I’m definitely not the only autistic OT.
HM:
But you are the Autistic OT according to social media!
SSH:
No, I’m not even the only autistic OT named Sarah! I thought I was unique and special.
HM:
I mean, at least we didn’t have you at that point. I think over the summer when we had Sarah Kurchek and Sarah Luterman like a week apart, just like the season of Sarahs around here.
SSH:
That’s why my last name was so helpful.
HM:
You’re the best. I think we have a great note to wrap up on and please make sure to check out Sarah and all of her work at The Autistic OT. She’s super active on Facebook, and it’s just amazing getting to follow along and learn from you. As for the rest of us, be sure to check out different brains.org and their Twitter and Instagram is @DiffBrains and also look for them on Facebook. If you’re looking for me, you can find me on all major social media @Haleymossart or you can also visit me at Haleymoss.net.
LB:
I can be found at CFIexperts.com. Please be sure to subscribe and rate us on iTunes and don’t hesitate to send questions to spectrumlyspeaking@gmail.com. Let’s keep the conversation going.
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
