Autism Language Mini Series Episode 2: Meg Proctor, Occupational Therapist

April is Autism Acceptance Month. This month, we’re releasing one new episode each week, in addition to our regularly scheduled episodes. These episodes are all about the language surrounding Autism. We had the privilege of interviewing several people for this Mini Series and we’re excited for you to listen in!

Meg Proctor, MS, OTR/L is the founder of Learn Play Thrive. She started Learn Play Thrive to help therapists who work on practical skills with neurodivergent kids to learn and apply the latest evidence-based, neurodiversity-affirming interventions to their work. She hosts the podcast, Two Sides of the Spectrum, where she explores research, amplifies autistic voices, and changes the way we think about autism in life and in professional therapy practice.

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Transcript

Rachel: 0:00

Hey there, welcome to our autism language mini series. In this series we are going to be discussing the verbiage surrounding autism and how it has changed over the years.

Jessica: 0:10

We're interviewing a variety of guests within the autism community, including parents, professionals and autistic adults, in order to better understand their preferences surrounding the way autism is talked about.

Rachel: 0:23

We're sharing a new mini episode every Monday throughout April because April is autism acceptance month. We hope you learn something new and enjoy these conversations. Hey there, welcome back to all things sensory by Harkla, you are listening to our episode two of our autism language podcast mini series.

Jessica: 0:42

That's a mouthful. Today we are going to be talking with Meg Proctor. She is an occupational therapist, and she has her foot in the autism community. So she is going to talk to us about her experience. And we're chatting again about the language surrounding autism. So maybe share this episode with someone who might also enjoy it.

Rachel: 1:06

If you missed our first episode of this series, make sure you go back and listen to our episode with Amber. She is a parent of an autistic adult and it's a great one to start with. So make sure that you're following along with our series. We launch a new one every Monday this month. So without further ado, let's get into it. I'm Rachel

Jessica: 1:29

And I'm Jessica. And this is All Things Sensory by Harkla.

Rachel: 1:33

We are both certified occupational therapy assistants and together with Harkla, we are on a mission to empower parents, therapists and educators to help raise confident and strong children of all abilities.

Jessica: 1:44

On this podcast, we chat about all things sensory diving into special needs occupational therapy, parenting, self care, overall health and wellness and so much more.

Rachel: 1:55

We're here to provide raw, honest and fun strategies, ideas and information for parents, therapists and educators as well as other professionals to implement into daily life.

Jessica: 2:06

Thank you so much for joining us.

Rachel: 2:12

Hi, Meg, how are you today?

Meg: 2:14

I am great. I'm so happy to be here.

Jessica: 2:17

Awesome. We're excited to have you. So first, what we'd like to do is have you introduce yourself to our audience. Let us know who you are as well as your relationship to the autism community.

Meg: 2:29

Yeah, so I'm Meg proctor. My business is called Learn Play Thrive. I'm not autistic. My relationship to the Autistic community is professional. I started out my work as an OT working with mostly autistic kids in the schools and their homes and a clinic and I eventually got a faculty appointment at UNC Chapel Hills Teach Autism program. They were one of the first programs back in the 70s to say autism is neurodevelopmental. It's not caused by refrigerator mothers. It has its own culture, autistic people have their own strings. And I got a lot of training and experience supporting autistic kids through that. But when I left that position, I developed a continuing education course on supporting autistic kids. And I quickly realized that I needed to be listening to and learning from the Autistic community since they are the experts on what it means to be autistic. So my relationship with the Autistic community now is that I host a podcast called two sides of the spectrum where I interview, right now about 60 to 70% of my guests are autistic and the other are people who are also listening to autistic people and trying to change therapy practice. And I run a continuing education company where we sell neurodiversity affirming courses to OTs and SLPs. Some are taught by me, some are taught by an autistic therapist and some are taught by other non autistic therapists who are listening to autistic folks. So I'd say my relationship to the Autistic community is that I am platforming autistic people to make sure therapists have access to their voices and are listening to them. And I am learning from the Autistic community in an ongoing way.

Rachel: 4:30

Amazing. That is why we're so happy to have your perspective on this podcast. I think it's so beneficial to just share what you've learned. And so our next question is when did you notice a change in the verbiage surrounding autism? So, going from person with autism to autistic person?

Meg: 4:49

Yeah, that's a great question. I think I was taught probably even before graduate school to use person first language separate the person from the disability, I even

Jessica: 4:51

I definitely agree. We've seen that shift as well. remember correcting my dad when I was in grad school and he said something something autistic kids. And I was like, Dad, it's kids with autism. And he said, Oh, please, next you're gonna have me call you a person with tallness. And yeah, and at the time, I just rolled my eyes. And later I was like, You know what he was kind of right, actually, that that I was asking him to separate somebody from part of their identity that was really inseparable. So I was already teaching a course on supporting autistic folks, that was learning style based, but not explicitly string spaced. And I didn't yet have the language or the full paradigm of neurodiversity affirming. But I started getting some pushback from autistic folks. What like, Mostly on social media, of course, of many adults saying, you obviously don't know what you're talking about. You're not even using identity first language. And like a lot of us at first, I was like, I'm not ready to hear that. Like, I can't even conceptualize the amount of pushback I would get from therapists if I started saying autistic, I was just too scared to make that change. This was probably 2018/2019. And then I remember the moment that I decided it was time, was when my colleague Sarah Sivaji Hernandez, who blogs as the autistic OT, she's actually blogging now as the Deaf Autistic OT on social media, joined my Facebook group. And I was looking at her profile name, and I said, you know what, like, I need to make this shift. And I said that to her. I was like, I think I need to switch to saying autistic, don't I? And she was like, yeah, you do, how can I support you in that? And I started reading everything I could find from autistic folks about why this felt important to them. And I started the process no, I am autistic. I'm an autistic person, not a person of changing the language in my course and my blog, my emails, I hadn't started the podcast yet. And at first, every time I started, I pull asterik and explained why because I thought people will just write me off if they hear me say autistic, they'll say, Oh, she doesn't know what she's talking about. She's behind the times. And eventually over time, oh, and I hedged with on the spectrum. For a long time. You can hear it in the podcast name two sides of the spectrum, which was a joint venture between me and Sarah at first. So we were kind of talking about an autistic person and a non autistic person exploring neurodiversity together. So I hedged for a long time before I fully committed to just saying autistic and answering the questions when they came. But I think by now, by 2022, it's more familiar to people. Or maybe I'm just in a bubble. What do y'all think? with autism.

Rachel: 8:24

So because you interview autistic adults on your podcast, can they verbalize what language they prefer? And have they verbalized that to you?

Meg: 8:32

Oh, yeah, I've interviewed at least 100 autistic people at this point. Is that right? No, I haven't interviewed at least 100. I've probably interacted professionally on different topics with at least 100. I've interviewed dozens I've yet to speak with an autistic person who prefers person first language. There are autistic people who do, but any survey of the Autistic community will show you that the vast majority prefer identity first. And people often pushback like this, right? When I posted on social media saying we need to shift to identity first as our default, they say, No, it should be individualized. We should use what people want. And it's like, well, yeah, of course, of course of an autism. If an autistic person tells me they prefer person first language, I would use that with them. But we have to have something as our default. And there is research that shows that person first language is stigmatizing that it increases stigma that we only use it with the things we as a society consider bad we say a neurotypical child because it's okay to be neurotypical, but we say a child with autism, because it's not okay to be neurodivergent. It's like put in this category of child with cancer as a disease. Whereas when you talk to autistic people, they're like, this is actually just how I think and perceive the world and it could never be any different. This is just part of who I am. It's okay to call me a brunette. Right? So I think that our defaults matter, even when we're listening to individual preferences, when can we not listen to the vast majority of autistic people? And the research on reducing stigma and default to identity first?

Rachel: 10:27

Interesting. That's such a good point. I love that.

Jessica: 10:33

The next question we have is, does it bother you when you hear somebody using the you know, we'll call it nonpreferred verbiage of this child with autism? When you hear that? Does it bother you? Do you feel the need to correct them? How do you approach that?

Meg: 10:56

It does bother me now. I mean, not if it was an autistic person using that for themselves. But that's not really how I've almost ever heard it. It bothers me, because I've spoken to so many autistic folks who describe their reaction and their experience when they're called a person with autism. I mean, you can imagine if, let's say it was divergent to be female in the society, and there was some stigmatizing way that they said, Oh, that's a person with femininity or something, you know?

Rachel: 11:35

Even just that comment, you throw like a girl, you know?

Meg: 11:38

Right, you take part of your identity, and you make it into some sort of impairment. It feels gross, it feels terrible. And I've had so many autistic people just describe that feeling of person first language, not sitting right and being so pathologizing and stigmatizing. I mean it it positions, being autistic as having a disorder. So I do have a response now, when I hear that, but there's a lot of empathy there, too. Because usually, it's therapists doing what they were taught in graduate school, or wherever, and not having had the chance to learn better. And so giving information, in my experience usually results in Oh, wow, this might be tricky, but I think I can change that. There's a few people who just doubled down, right? No, you can't be right. I just finished OT school and my professors told me to use person first. So that must be right. And I'm like, oh, man, you have a long road ahead of you. Right? If your deference to authority is that strong, and your sense of authority, being professors over the voices of the people in the community you're serving, like your professors can get it wrong, your historians can get it wrong. Your parents can get it wrong, you can get it wrong. These are people who can't really discern fact and fiction from authority and power very easily. And those people can be noisy. And I have less tolerance for those folks, because they're trying to use their position of power. Oh, I'm a therapist to silence the message of autistic people.

Rachel: 13:36

I'm curious how you go about having that conversation with someone who maybe does give pushback, and says no, it actually is person with autism. How do you go about having that conversation to like, kindly educate them like, Hey, this is actually changing? And this is why.

Jessica: 13:53

Or how do you know when to just step away? Because it won't be productive?

Meg: 14:01

Yeah, that's true. I mean, I think just giving information. Honestly, my favorite way to change cultures is not through direct confrontation. It's through trainings that aren't aimed at anybody, right? So I tell therapists who are like, I want to do things differently my school system but we have a very medical model, compliance based approach. What I do is see neutral, have a full staff training, where someone is sharing like, here's what we're learning from the Autistic community. Ideally, you have an autistic person giving this training most of us prefer identity first language because this, this can be hard for neurotypicals because this but it's important for these reasons. When people aren't feeling confronted, they're more likely to listen and learn. So that's my favorite way. I'm mostly having these interactions like on Instagram at this point, right? Because I'm running an online business, not a therapy. accompany at this point. So it's a little different. But for people who feel like they want to say something, they want to be brave, they want to be a change agent, but they know that direct confrontation shuts people down, I would just talk a little bit about my own choices, right? Like, oh, just so you know, you'll hear me say autistic. I've been working really hard to learn from the communities that I've served. And I've learned that most autistic people really, really dislike person first, and prefer identity first, and I read some research that identity versus really stigmatizing. So if you hear me say, autistic, that's one and let that just sit with them. The people who fight back, it's often this is more complicated. Well, I'm working with parents and they prefer person first. And that's tricky. And we're being asked by the disability community, not to let parents speak for disabled folks, that disabled people get their own voice. So we navigate that carefully with families, but they deserve the opportunity to listen to and learn from the Autistic community too. So why can't we do it together? Like why can't we go through that process together with parents and families? I don't think we need to be so afraid of these differences to just tiptoe around them.

Jessica: 16:35

Yeah, I think it's really great what you're doing. You're doing it in such a way that is kind and empathetic and just trying to help more people versus trying to push your opinions on people. So I think that that's great work that

Meg: 16:52

You know, I've been surprised by the reception of you're doing. some of the more controversial stuff that I put out there from the therapy community is, I think the first blog posts I wrote and shared on social media before I had like an email list or anything was about why we shouldn't do hand over hands and how it violates bodily autonomy. And I just like waited for the backlash. And it never came. I've had a few people, but mostly people. This message about listening to autistic people and learning from them and coming from a place of respect and string space practice instead of compliance, and conformity resonates with our values, as therapists, it doesn't resonate with what we were taught or what we saw modeled. But when you say something that resonates with people's values, for the most part, they go, Whoa, oops, you're right. Like, I'm out of step here. I want to be over there. And that's really refreshing just to watch how so many people in our profession are open to looking at themselves and saying, wow, I got this wrong. Let me do the next right thing.

Rachel: 18:14

Yes. And it's okay that you got it wrong, or you were taught the wrong way, because we're all doing the best we can with the information that we have at the time. And so if people are listening to this podcast, and their eyes are open, then we did something great.

Meg: 18:29

Absolutely, yeah. And it's so much more courageous to say, what would it look like to change that than to say La la la la la la. Like, I never heard this? I can't deal with that.

Jessica: 18:40

Yes, totally agree with that. Well, is there anything else that you would want to add to this conversation that we haven't talked about yet?

Meg: 18:50

I mean, I would just say that the language shift is only the start. Shifting from saying person with autism to autistic person matters, but not as much as changing the way we think about being autistic. We learned most of it wrong. We really we learned most non-autistic people have learned to understand autism through the eyes of the medical model that really looks at trauma behaviors from autistic people. And we absolutely will not be able to authentically support our autistic clients until we engage in an ongoing process of cultural responsiveness listening to learning from autistic people, autistic people who are black, brown, indigenous white, queer, trans, young, old, right, we need a lot more time listening before we can really stop doing harm, and start supporting autistic people to flourish artistically Yeah, instead of trying to teach them to act like they're not autistic, which is, which is hurting them. So if people haven't really gone there before changing your language is important, but it's a pretty superficial step compared to the deep work that we need to do in our fields.

Rachel: 20:32

Absolutely. I love that. Thank you so much, Meg, it was a pleasure chatting with you. Thank you for sharing your thoughts and all this knowledge with everyone. We appreciate it.

Meg: 20:43

Thank you. And thank you for for having this conversation and getting it out to more folks.

Rachel: 20:49

Thank you so much for listening to all things sensory by Harkla.

Jessica: 20:52

If you want more information on anything mentioned in the show, head over to harkla.co/podcast to get the show notes.

Rachel: 21:01

If you have any follow up questions, the best place to ask those is in the comments on the show notes or message us on our Instagram account, which is at Harkla underscore family or at all things sensory podcast. If you just search Harkla You'll find us there.

Jessica: 21:17

Like we mentioned before our podcast, listeners get 10% off their first order at Harkla.co. Whether it's for one of our digital courses or one of our sensory swings, the discount code sensory will get you 10% off. That's s e n s o ry.

Rachel: 21:35

Head to harkla.co/sensory to use that discount code right now,

Jessica: 21:41

we are so excited to work together to help create confident kids all over the world. While we make every effort to share correct information, we're still learning.

Rachel: 21:50

We will double check all of our facts but realize that medicine is a constantly changing science and art.

Jessica: 21:55

One doctor or therapist may have a different way of doing things from another.

Rachel: 21:59

We are simply presenting our views and opinions on how to address common sensory challenges health related difficulties, and what we have found to be beneficial that will be as evidence based as possible.

Jessica: 22:11

By listening to this podcast you agree not to use this podcast as medical advice to treat any medical condition in either yourself or your child.

Rachel: 22:19

Consult your child's pediatrician or therapist for any medical issues that he or she may be having.

Jessica: 22:25

This entire disclaimer also applies to any guests or contributors to the podcast. Thanks so much for listening