From Awareness To Acceptance: w/ Autism Out Loud

Shawna: 00:00:00

And so what's your experience been like having a girl that's autistic?

Mercedes: 00:00:04

Yeah. Yeah. It's often, you know, their. Their traits can often be misrepresented when it comes to girls versus boys.

You know, they can be presenting completely the same, but for. For girls, they might just be. Chalk it up to social anxiety. Chalk it up to just being a little bit stubborn or.

Brittany: 00:00:24

Hey, everyone, I'm Brittany, speech language pathologist.

Shawna: 00:00:27

And I'm Shauna, behavior analyst.

Brittany: 00:00:29

And we're your hosts at Neurodiversally Speaking.

Shawna: 00:00:31

This is a podcast where we bridge the gap between research and practice, exploring autism and neurodiversity through the lens of speech and behavior.

Brittany: 00:00:38

Whether you're a parent or a professional, we'll give you practical tips to bring into your home or your next therapy session.

Shawna: 00:00:44

Let's get started.

Narrator: 00:00:45

Welcome to the Neurodiversally Speaking podcast with Brittany Clark and Shawna Fleming from lmno, brought to you by the Sensory Supply.

While we aim to make neurodiversity speaking suitable for all audiences, mature subject matter can sometimes be discussed suitable only for those over the the age of 18.

If you're under the age of 18, please talk to your parent or guardian before listening to our show or listen together with them to stay up to date on new episode releases and show updates. Connect with us on Instagram eurodiversityspeaking.

You can also send us listener questions to address on the show at hello@neurodiversallyspeaking.com neurodiversally speaking starts now.

Brittany: 00:01:33

Welcome to Neurodiversely Speaking. We're Brittany and Shauna.

And this month, in honor of Autism Month, we're talking about why this work matters so much to us and why we're listening to autistic voices and families is the key to real change.

Shawna: 00:01:46

So today we're joined by Mercedes, the creator of Autism Out Loud. Mercedes is a registered nurse, a dedicated mom to a daughter with autism, and a passionate advocate for autism and neurodiversity.

Through her work, she supports both parents and professionals in better understanding and uplifting autistic individuals. You can connect with her on her Instagram at Autism Out Loud. Hey, Mercedes, we're so thrilled to talk with you today.

Mercedes: 00:02:09

I'm so excited to be here, too. Thank you so much.

Shawna: 00:02:12

You can't see me, but I can see you. I was thinking I have to sit on Britney's lap if we wanted to both be in the camera. So we do get very close, but it's not that big. Too much.

Mercedes: 00:02:23

Oh, my goodness. Nice to meet you guys.

Shawna: 00:02:25

Yeah, nice to meet you too.

Brittany: 00:02:27

Thank you so much for joining us.

Shawna: 00:02:28

Today day where I feel like this.

Brittany: 00:02:30

Is such a timely conversation that we're having.

Mercedes: 00:02:33

Gosh, very.

Shawna: 00:02:34

And we'd love to get started just hearing like what started you on your journey and inspired you to start autism out loud.

Mercedes: 00:02:41

Yeah, great question. So my daughter, she's six years old and she was diagnosed as autistic about three years ago now. And I myself am a registered nurse.

And one of the biggest like shock shocks to me was that how little I knew about autism, being a registered nurse at the time when she was diagnosed.

And I was really taken back by that and like, kind of disheartened to be honest, because if me being a registered nurse knows this little about autism, then what does that mean for the general population?

So I started my platform to just, you know, spread awareness, spread evidence based awareness and try to get that the word out about simple things that the public can, you know, start learning and taking in to create a better world for autistic people so that there's more understanding. And then the, the account kind of just blew up. I gained a lot.

I gained like really great community through it, connected with lots of parents, connected with lots of autistic adults and have learned more in the past three years than I've ever learned in my life. So yeah, I just keep going with it.

Shawna: 00:03:49

Amazing. How long ago did you start the account?

Mercedes: 00:03:52

I started it probably like six months after she was diagnosed. So maybe two and a half years ago. Amazing.

Shawna: 00:03:59

Yeah, you do have an amazing following. And then certainly right now I've been very interested in all the content you've been sharing and very thankful for your advocacy there.

I would imagine, though, there's got to come some times where you've kind of had some challenges with sharing your story. Is there examples that come to mind or a story that you can think of?

Mercedes: 00:04:20

Oh, yeah, just I think, I think with.

With autism being so misunderstood and the like prevalence of stigma and stereotypes, a lot of the stuff that I've shared, every once in a while there will be comments coming in from people who, you know, do have really flawed opinions and perspectives of what autism is. So every once in a while I will get some comments from people like that.

But honestly, I just look at those comments and it just kind of fuels me to keep going because it's ev. That there needs to be more awareness, there needs to be more education. So I just keep going.

It kind of fuels me at this point instead of, you know, hurting me as it did at the beginning.

Brittany: 00:05:01

Right. And it sounds like when you first launched or shared your story that people were overall really receptive to it.

Mercedes: 00:05:08

Oh, yes. Very supportive and like, just such a fantastic way to connect with others because it is hard in person.

I think most of my community and people who I go to for support, it's. It is the online community and it's, it's been so helpful. So the pros definitely outweigh all the cons, which, you know. Yeah, it's been great.

Brittany: 00:05:30

And did you find people even in your own circle, like your own family or your own friends thought, well, I didn't know or I didn't realize or like, thanks for sharing your struggle and your joys and your, your story, because even people close to you probably didn't really have an idea of what you're kind of going through.

Mercedes: 00:05:45

Oh, absolutely.

Yeah, it's a, It's a great way to communicate, even with those who are closest to me because, yeah, you know, as parents, we kind of, with any type of struggle, it's. It' not easy to reach out and it's not easy to be completely honest because you don't want to put your burdens on other people.

So we often just quiet. We quiet ourselves down. But on. In the online world, I'm quite open. I'm like an open book.

So it's definitely, you know, given, given my family and friends a new perspective, which, which has been helpful for me too, for sure.

Shawna: 00:06:17

Yeah, I was.

One of the posts that really stood out from yours that I've held onto is the something about like, de influencing you and going through some of those things maybe commonly thought of by the general population and then giving some like, really practical answers to those questions. And I thought, I feel like your content is so approachable and really digestible. I'm a clinician and I find it really fascinating.

And then I could also imagine parents really being able to absorb all the content you're sharing.

Mercedes: 00:06:48

Yeah, I've gotten good feedback from parents even of neurotypical children or children who are experiencing other types of differences, like, and different challenges.

And I've gotten great feedback saying that it's been beneficial just to learn how to communicate to children about other children, how to be supportive to anyone and all friends. So, yeah, I hope that it's content that everyone can. Can kind of consume and take something away from, not just people in the autism community.

Brittany: 00:07:17

For sure.

I liked in the summer too, you were sharing about how you went on some family trips and vacations and this summer was like, this place was really autism friendly, or this place really meshed with your family values.

Shawna: 00:07:29

And I love that it's mom again.

Brittany: 00:07:31

Like, we're both moms. And that was really inspiring to me to read that you'd been to a place that was really wonderful.

But I'm sure you've also had experiences where it hasn't been the case.

Mercedes: 00:07:40

Yes. Oh, absolutely.

And probably, I would say two years ago, I could never imagine traveling the way that we travel now with our children, because my daughter was just at a completely different place with her communication and being able to emotionally regulate herself. So traveling was not on our radar. But now she's just like the most adventurous child.

Like, we have to have little getaways, but planned because it makes her so happy. So we've been trying to get away as much as we can, and it just sparks so much joy for her. So, yeah, I hope that.

I hope what it does by me sharing those things is encourages other families to also take the. Take the leap and build those memories that we all deserve.

Brittany: 00:08:20

Yeah, but you're real about it, too. Like, you just shared this recently about the fairwhelming.

Shawna: 00:08:26

It's so overstimulating for us as parents, but they love it.

Brittany: 00:08:28

And so there's that balance, right?

Mercedes: 00:08:30

Oh, yes, absolutely. Oh, yeah. And traveling and doing all those things, even like going to the fair and going to, like, little places like that, it takes.

It takes more prep. Prep for families like ours. And sometimes it goes completely astray. But we just have to. We learn to live with it, for sure.

Shawna: 00:08:45

And I love that about your story.

Brittany: 00:08:46

Then you're sharing the real story behind things, you know, the joys, and also sometimes when it's not easy and what works for you guys. So I really respect that.

Mercedes: 00:08:55

So thank you. Yeah.

Brittany: 00:08:57

So kind of as I appreciate you sharing your story, and we're again, so happy to have you here on the podcast to hear how your journey sort of been shaped.

And I also appreciate how you said that as a nurse and as a health professional, you were surprised at how little you knew about autism and imagine then the sort of general population. So I think that's such an important part of your journey, is that you're then trying to sort of share that message with everyone.

And so since we're having this conversation in Autism Month again, it feels really important for us to take a step back and look at sort of the bigger picture.

And so we'd love to hear your thoughts about what Autism Month means to you and sort of how we're moving Away from awareness to acceptance and inclusion.

Mercedes: 00:09:42

Yeah, absolutely. I think it's awesome because so many people, you know, come together to spread that message. We do in our community. We do every single day.

But it is a time to really amplify that message.

And, you know, a lot of people who aren't in the community will take the time to kind of learn about autism, learn ways to support the autism community, and it's a great time to have discussions. So one thing that I do every autism month is I go into my daughter's school. I will read her class a book that has to do with autism.

I'll ask them questions, or they get them to ask me questions. And she's.

And they're so little, so it's the cutest experience, hearing their questions about, you know, their friends with differences and how they can help them and ways to play with them. And it's just. It's great. It.

Lots of different initiatives, which is really important, and just amplifying that message of awareness and acceptance and how we can, you know, really be supportive to autistic children and adults every time of our life.

Brittany: 00:10:45

Yeah.

And I like how you highlighted this every day, not just a month, but the month gives us that opportunity, that reason to go into the school or reason to share a favorite book. Actually, I'd love to put in the show notes some of your favorite books.

I don't want to put you on the spot, but if you've got some that we can share with our listeners, that'd be amazing.

Mercedes: 00:10:59

I have so many, so I will send you a whole list.

Brittany: 00:11:02

Yeah, perfect.

Shawna: 00:11:02

Thank you. That's fantastic. And I think one of the things you're talking about there is, like, moving past awareness and really supporting that understanding.

Understanding of autism. Right. Like going into the classroom and sharing that way.

And I wondered, because you have a daughter, we see sometimes that autism is, like, missed or diagnosed later for girls. And so what's your experience been like having a girl that's autistic?

Mercedes: 00:11:28

Yeah, yeah. It's often, you know, their. Their traits can often be misrepresented when it comes to girls versus boys.

You know, they can be presenting completely the same, but for. For girls, they might chalk it up to social anxiety, chalk it up to just being a little bit stubborn or, you know, or sensitive.

So, yeah, for us, I was. I was quite lucky, I feel, in the sense that we got her diagnosis quite early.

But before we did have that diagnosis, even my husband and I, we caught ourselves saying, oh, you know, she's just shy, or she Just has her, her preferences for going places, things like that. So I can definitely see how that continues on.

And then people get that late diagnosis, unfortunately super, super common with women and for like bipoc individuals. So it's unfortunate that. But again, more awareness and that's the hopes. Right?

Earlier diagnosis means earlier support and acceptance for families where they can move to that stage of acceptance and, and yeah, just, just, you know, build that self acceptance too in their child from such a young age. It's so important.

Shawna: 00:12:36

Right, right.

So it sounds like you're saying potentially autistic girls are like missed because society has like different expectations or something for girls and we'll like chalk it up to something else instead of saying, yeah, oh, it's autism. Is that what you would say?

Mercedes: 00:12:50

Yeah, yeah, exactly. Yeah, exactly. Sometimes they do have different traits in general.

But even when we've seen now in the research that like, even when they do present similarly to little boys for some reason girls just. It's mislabeled more often. Yeah, yeah.

Shawna: 00:13:06

And do you find that you get that label of like not autistic enough or she doesn't look autistic or something like that? I don't know if that's more with girls or boys, but I certainly have hear it from other parents. And how does that like impact you?

And I don't even know, maybe her too.

Mercedes: 00:13:20

Yeah. Oh yeah, I get that all the time with her. So with her, she's got lots of super advanced skills.

So she's hyperlexic, which means from the age of two, she was reading books front to back. She has always had a massive vocabulary and can read at such a young age. So, you know, a lot of people would say, oh, but she's so smart.

And I'm like, yeah, autistic people are smart too, you know. Yeah. Or, or, oh, I couldn't even tell. She seems so normal to me. I'm like, autistic people are also normal.

So it's, yeah, it's just lots of like that misconception and people have a very narrow window of what they think autism is or what it looks like.

So when they see, you know, kids, kids or adults who don't really fit what they, what they imagine it to look like, then they're, it's, they're shocked and, and yeah, a lot of even more misunderstanding happens because of that.

Brittany: 00:14:17

Totally. Wow. Yeah. That must be hard to hear for you, you know, but she looks normal. Like that's a hurtful thing to say, you know.

Mercedes: 00:14:24

Yeah, yeah.

Brittany: 00:14:25

Your daughter's Wonderful and amazing and I love. Again, another thing that you shared is like advice to parents is just acceptance.

Like accept your child for who they really are, not what you think they should have looked like or that you think they should have been or something like that.

Mercedes: 00:14:38

Oh, absolutely. I think that's honestly the biggest piece. And, and it's hard.

And it's not to say that like you're not going to experience a whole slew of emotions when a diagnosis comes.

And throughout your whole life it's completely normal and like you go through stages of, like, different stages to get to that place of acceptance, but the quicker that you can get to that acceptance and you know, really come to terms with the fact that this is who my child has always been, right? Because like, like, you know, like from the day that they were born, it, like this is, this is them, this is who they were destined to be.

And like, they're incredible. So yeah, it's, it's, it's, it's tough because it plays on your emotions when there's lots of worries.

And you have to accept living in the place of the unknown. Like every autistic child is very different. You don't know what their communication is going to look like when they're older.

You don't know what kind of challenges you're going to have. But you really need to work on, you know, being content living in that place of uncertainty, which is a very hard thing to do.

But over time you do build those skills and, and it only benefits your child the sooner that you can get to that place of acceptance because they are who they are and they're incredible. Right? So it's, it's tough, but yeah, it's worth it to, to really get to that place.

Shawna: 00:15:54

I could see that being so hard. Like, I think being a mom has got to be one of the hardest jobs, right?

You're second guessing everything and if you have a autism, you have less of sort of a clear vision probably like you said, of like what that even like tomorrow maybe could look like at times. And so I can imagine that that would be so tricky.

Do you have like ideas or suggestions of ways that have helped you sort of come over to an acceptance spot?

Mercedes: 00:16:21

Yeah, yeah.

I mean, I'm very, I feel like I'm very lucky and privileged to have the community that I have online because it's allowed me to connect with lots of autistic adults. Autistic adults who are on various areas of the spectrum as well, various different places and experiences in their life.

I've Connected with lots of people who don't use words and they are full time AAC users and what that life looks like to them.

I've connected with adult autistic adults who are physicians across the globe, all different, all different types of careers, ways of communication and hobbies and all of these things.

And I think that one of the best things that you can do as a caregiver on this journey is to connect with autist adults and learn from them and, you know, just listen to their voices and listen to their experiences and their journey because it is very empowering. It's very empowering. And you learn, you learn that, you know, like autism is not, it's not.

It has its challenges, it's absolutely a disability, but it is not the tragedy that the world portrays it to be. And these autistic adults are evidence of that.

Brittany: 00:17:34

Right, Great.

Shawna: 00:17:35

I'd love to add that to the show notes too.

If you have any of your favorite accounts or any, I don't know, blogs and stuff, I imagine you get to connect with more people because of your platform. Some resources for parents early in their autism journey. I'm sure it would be really, really helpful and insightful.

Mercedes: 00:17:51

Oh, absolutely. I'll definitely share some stuff. Perfect.

Brittany: 00:17:55

Great.

Shawna: 00:17:56

And so overall, what would you say that you wish people understood about girls that are on the spectrum?

Mercedes: 00:18:02

I, man, I wish that people understood that, that getting that diagnosis is, is like opening, like getting a key to open the doors. A lot of people are really scared of it. So a lot of people will, you know, wait longer, like they'll wait it out.

They will, you know, say, chalk it up to other things like I shared before, like, oh, it's just social anxiety. We just need to like get, get her to go out more, things like that.

So one thing I wish people really understood was the benefits of getting that diagnosis. And it's not even just for benefits of yourself, like being able to get supports in place and things like that.

It's benefits for your child because, you know, having that diagnosis and actually like building yourself up to talk to them about it from such a young age builds that self acceptance from such a young age. And that's so important for autistic people.

We know that they have such a higher likelihood of, of mental health challenges, suicidal ideations, and a lot of that stems on them believing that their burdens, that their burdens to the society, they're burdens to their family.

So having that, you know, building that self awareness, self acceptance from such a young age, like as young as you can that's going to be a protective factor for their mental health.

Brittany: 00:19:22

I love that. Beautiful.

Mercedes: 00:19:23

Thank you for sharing that.

Brittany: 00:19:25

I was wondering too.

We have had an experience in our clinic where families have said, like, they had to go back, like, time and time again because the professionals were saying.

Shawna: 00:19:33

Like, well, I don't know.

Brittany: 00:19:35

And was it hard for you in the diagnosis process, you know, to get an answer? I guess is maybe what I'm asking.

Mercedes: 00:19:43

Yeah, for us it wasn't that hard. Unfortunately. There's a, there's so much wait list across the world really when it comes to getting that diagnosis.

So we did have to go the private route.

We had to pay for her to get a diagnosis or else we would have waited two and a half years for her to have her assessment done, which I wasn't willing to do.

You know, unfortunately, most like, like, again, it's even that those stereotypes and the misconceptions when it comes to the girls, it is seen in healthcare providers too. You know, being a healthcare provider myself, I will say that. So a lot of them will say, you know, I'm not too sure, like, come back in a year.

So a lot of people do go the private route as well and get it done by somebody else else.

You have, I always tell parents, do your research before you do go see somebody, you know, look into reviews and look to see if they do specialize in girls. Because often it is the girls that are being turned away and saying, oh, I can't really say right now, you know, come back another time.

For us, my daughter Camila, she, they were able to diagnose her quite, quite like right away. Her trip traits, she. She checked off a lot of the boxes for her traits. But unfortunately it's just the wait list.

Like, if we did go the publicly funded route, it would have been a while before she got her diagnosis. But we had the privilege to pay, so we did. But yeah, it. A lot of people are turned away. A lot of people have to wait.

They don't have the means, the financial means to pay privately. There's just so many barriers and it's very unfortunate because the child at the end of the day is the one who, who had the consequences for them.

Right. Supports aren't put in place. The school doesn't have a diagnosis for them. All these things.

Brittany: 00:21:31

Yeah, absolutely. Thanks for sharing that part of your story.

And I'm curious, you, you mentioned when we were first chatting that, you know, you didn't know too much about autism. And then I'm curious for parents listening to this what was that?

You know, without sharing too much about your daughter specifically, but I'm wondering what was the thing that sort of made you think, okay, we better check this out. Like, what got you? Whether it was listening from her daycare or, you know, a doctor visit or what was that sort of initiating event?

Mercedes: 00:22:02

Yeah, well, I'll never forget it because I was about eight months pregnant and we started seeing. With my son.

Brittany: 00:22:09

Right?

Mercedes: 00:22:09

We started. Yeah, with my son. So Camila was just about two, I would say, and we started seeing really, really, really big behaviors.

And it was tough for us to know at the beginning that she was autistic or 2 years old, because, like I said, she was hyperlexic and had a huge vocabulary. There's lots of words. She was checking off lots of her milestones. But then around when like.

Like I said, around two, when I was eight months pregnant, she started showing very big, big behaviors that were very concerning, you know, self aggression, aggression towards others that I knew was not developmentally in line with her age. Okay. So we brought her to see a behavioral. And a behavioral therapist just to be like, do you have any idea, like, what's going on?

And within five minutes of them saying, seeing her, they said, has anybody talked to you about autism? And I was just like, nope, okay, no, but like, but like, help me out here. So.

So yeah, it was actually a behavioral analyst who flagged autism right away for us. And then we went and did that private assessment and she was diagnosed within six months.

So, yeah, it was definitely the behaviors and the behaviors for Camila stemmed from her communication difficulties. Right. So as you obviously can imagine, you know, not being able to communicate your needs and your wants is incredibly distressing.

And we started seeing that with her. So over the years, of course, course she's.

Her communication has improved significantly both with her words and with non verbal, like, gestures, things like that. And those big, big, big behaviors have. Have practically gone away.

Shawna: 00:23:58

So I think you bring up something so fascinating there because you described her language as always being so big. Right. She had lots of words, but then seeing she wasn't communicating. And often people think those two are the same thing. Right.

Oh, and I think with autism, sometimes will see, like, unique language usage where they're often like, labeling stuff and talking about lots of things that they see, but might find that communication piece to be more challenging, like to say, like, help me instead of just like persisting through something and trying to fix it themselves. Or these are some of the things that we'll see at the clinic. And so I Think that's such an important distinction.

It's not that she didn't have the words, like, in her brain, is that it was actually tricky for her to pull them out in that moment of need. And then that would lead to sort of. It sounds like some big meltdowns, of course, because it's like so frustrating to not get your needs met.

Mercedes: 00:24:48

Of course. Yeah. Oh, yeah. Camila has been doing using echolalia forever. She still, she still communicates a lot using echolalia.

So that is like repeating, you know, as you guys would know, but for anyone listening, like repeating videos, like sentences from videos, repeating things she read in books, repeating things she's heard from her parents. She still does that often. But yeah, so that was another thing.

It's like you can hear this little two year old speaking, essentially, but not having any conversation with her parents, not answering any questions, not asking us any questions, not responding to her name, but loads of words. So it was, it was confusing for sure.

Shawna: 00:25:26

Sure. And I always, I love when we get kids like this at the clinic because it's fascinating how much their brains can retain.

I'm like, how can you recite this entire episode of Bluey?

Mercedes: 00:25:36

Yeah.

Shawna: 00:25:37

And it comes back to that place.

Brittany: 00:25:38

Like you said, she's so smart and it's never a question of her intelligence. She's an incredibly bright child and so. And with really good language, like really good vocabulary.

But in those moments, she's not coming to you to say, mom, I'm upset. You know, for two year olds, we don't always expect them to be able to say that in those moments.

But it also sounds like the things that you were seeing were different from sort of what we would see from a 2 year old. Like a tantrum.

Shawna: 00:26:05

Like it was.

Brittany: 00:26:06

You could tell that it was that much more escalated.

Mercedes: 00:26:09

Yes, absolutely. The, the intensity of it, the frequency of it. Yeah, it was, it was to the point that, you know, it was very.

As a mother, you seeing your child go through something like that, you know, when it's, when it's. You need help, you know, when something is beyond something, it's something else, you know.

Shawna: 00:26:29

Right.

Mercedes: 00:26:29

So, yeah, that's definitely what. What got us to start our journey. And I'm so grateful that we did because. Yeah, it. Yeah. Because again, it can be confusing.

You know, she was my first child.

Brittany: 00:26:42

Yeah.

Mercedes: 00:26:42

So I didn't have something to compare a neurotypical child, you know, another experience to this. I thought perhaps at the beginning, you know, is this a. The terrible twos? You know, is this. It Like, I don't know.

But then, but then it eventually, you know, escalated and I was like, no, no, no, this is not, this is not okay.

Brittany: 00:27:00

Yeah.

Mercedes: 00:27:01

So yeah, yeah, it was tough, but, but she's in such a different place than where she was at in terms of her communication and ability to regulate her emotions. And that's another thing I always tell parents. The first little while is going to be so hard for both you and your child.

You know, going through this journey together. But it gets so much easier. It really does.

Brittany: 00:27:23

Wow. Wow. Thank you for sharing along the journey. You know, you're saying she's like really come so far.

Did you have like, what were your sort of best resources for yourself too to learn more about autism and more about how to help manage some of those things for her, like help her kind of manage her emotions in those times. I know again, as a first time mom, like I felt like it was a struggle, right?

Like I'm like, I thought I knew all these things and now it's all out the window in the moment. Like it can be so challenging.

Mercedes: 00:27:53

Oh yeah, it's so, it's so challenging.

And I learned so much from like I said, autistic adults, but things that help them, of course that was like huge for me, especially when it comes to like neuro affirming type of therapies and practices and things like that. Because you know, there's lots of therapies. Like you're just thrown so much information and it's like you need to get them into 40 hours of Aba.

You need to do this. And I'm just like, she's two. Yeah, I've learned, I've learned things, you know, over the years.

You learn what, what, what best supports them because you see it yourself. You learn about different terms and things that can happen to children like burnout and things like that.

So you know, things are on your radar and then eventually kind of just learn like you try lot. Lots of things are trial and error. I will say I've tried different types of therapies for her. Didn't feel like it was a good fit.

Didn't you know, she, she wasn't into it. So I've tried lots of different things. But yeah, it's just honestly a day by day thing.

And I, and I always tell parents like it's not a race like they tell you it is. They really, really want you to get them into as much thing as much as possible.

But you know, one of the best things that I've ever done is like, come to the acceptance that it's okay if she just doesn't do anything. Some days it's okay. This is school. It's okay if, you know, we don't have plans.

And it's okay if I'm not working on therapy stuff at home with her every single day, drilling her, you know, like, it's tough. It's a lot of trial and error and just figuring things out yourself as a family.

Brittany: 00:29:30

Right, Right.

Mercedes: 00:29:31

Yeah.

Shawna: 00:29:32

And I think you talk, we could probably have a whole episode on this and certainly something that we're very passionate about too is how to balance all these things and just be a 2 year old and then also make sure that you're getting support if that's, if now's the time for it. And we often see from the therapy standpoint that it comes in like ebbs and flows.

You know, there's times where we're really useful and then times where you might fly for a little bit and then maybe come back to us in a couple of years or that sort of thing. And I think having that flexible approach is really helpful.

And then certainly from your perspective as a parent, I can only imagine, like I'm so busy as a mom and having to manage like that many therapy appointments on top of just like regular life demands would be so much. And so I think this, like what you said is so validating to parents who are trying to keep all these balls up in the air and it's nearly impossible.

Mercedes: 00:30:21

Oh, nearly impossible. And I was so lucky because when Camila was diagnosed, I was off on my maternity leave with my little guy.

And so we, she started in this one program called Entry to School and it prepares little kids to start school. So it's six, it was a six month program and I had to drive her there, pick her up like during daytime hours and then therapy on top of that after.

And it's just like it was mind blowing. I don't know what I would have done if I didn't a have the support from family or be beyond maternity leave. I work full time, so.

And I know so many parents are in the same situation. A lot of parents actually go off of work.

But it's such a double edged sword because then if you go off of work, how are you going to afford all this therapy? So, yeah, challenging. There's so many layers of challenge that people don't really understand for I'm sure many different types of disabilities.

When you're like navigating that world of therapy and treatment and all these things and medical complexities Camille has also got a diagnostic diagnosis of arfid. It's just, it's a lot.

Brittany: 00:31:26

Yeah, yeah, sure.

Shawna: 00:31:27

Yeah. I would love to chat about ARFID at a future conversation.

I'm very interested in it and have been loving the content that you've been sharing around acceptance, around that too. And oftentimes we're looking at like.

And again, timely, given everything going on in the world, but talking about autism as something that needs to be, like, fixed or cured, and I know that's something that you're so passionate about, is helping certainly with autism, Autism Awareness Month. But even beyond that, it's starting to change that narrative and that autism is not a tragedy.

And so what are some of your thoughts around fixing autism or how we can help move things more towards that acceptance?

Mercedes: 00:32:09

Yeah, it's, it's, it's so tough. Honestly, the past year, I would say there's been just so much in the world with autism.

Autism has always been like a diagnosis where everybody has heard of it, but not everybody actually knows. Knows much about it.

Yeah, because it's been, it's been a diagnosis that's always used to like, you know, talk about all these myths, misconceptions and all these different rhetoric and stuff like that. It's just, it's a, it's a diagnosis everybody has heard of and not for the right reasons.

So it's been tough because a lot of that stuff trickles into families and friends and view your daughter as. Or child, I should say, has something gone wrong? And that's probably been the most difficult emotionally for me personally.

So I am incredibly passionate about it because that passion is fueled by emotion and lots of hurt that I've experienced.

Brittany: 00:33:07

Yeah.

Mercedes: 00:33:08

And I think that a lot of people experience, unfortunately, because, you know, when you are, when you have an autistic child, one thing you're going to do is like, you are going to look into things and try your absolute best and do anything and everything to help them. And what comes with that is looking into research, looking into evidence for a lot of us. And that's what I spend most of my days doing.

And when so much in the media and so much is just inaccurate and just fueling things that actually harm your loved ones. It's, it's, it's really hard to process. But like I said, I try to take all these negative things that are.

Is going on and just use it as fuel to keep trying to educate the right things. And that, you know, connecting with other people who are doing the same things has been Very helpful.

Lots of science communicators online, lots other autistic adults and caregivers of autistic children just coming together and finding that support and that community. It helps you get through those tougher times.

Shawna: 00:34:09

Right?

Brittany: 00:34:10

Wow. Yeah, exactly. And I think unfortunately, like you said this past year specifically, it's not just small accounts sharing these things.

It's coming from really big, without naming anyone, like, administration.

And it's like, yeah, really terrible things that are being said about people with autism and what they cannot do and what, you know, sort of painting this brush as if everyone is sort of this tragedy.

Mercedes: 00:34:39

Right, yeah, exactly. And that's what it is. And like, it's lots of like, just dehumanization that's taking place and that's. And it's awful because, you know, there's.

There's nothing anyone could do to prevent having autistic children. And like, like, you can't take anything away that would stop autistic children being born. Like, it's, it is truly a neurotype.

And, and there's such a lack of respect when you look at it as, as something gone wrong.

It's such a lack of respect to autistic people, to the families who are trying to build this world of acceptance and understanding that so that their children and loved ones can be supported. And it's just, we're constantly battling like, it's a. Constantly battling like uphill and it. And it's, it's hard. But like I said, coming together to.

With that community who's also trying to do the same thing and you know, these autistic people for who they are and, and views them as worthy human beings like that, that will make all the difference. Because it certainly has for me.

Brittany: 00:35:47

Something you shared again, I think it was just this past week really hit home with me too, about how it's not just hurtful and emotional, really negative things come through the media about autism is actually impacts the way that policies are written and impacts, you know, funding decisions. And there's such a massive impact. And already we know, like you said, there's a wait list, it can be years for diagnosis.

And we're in Ontario, Canada, and you mentioned, you know, wait list even just for treatment, and families are having to pay privately to make up for that. And so when the narrative is so negative, then that sort of trickles down, you know, across, like, across these big systems.

And then of course, it's also incredibly upsetting to the individual and the families. But it's like a bigger picture.

And I like that you shared that and then sort of, you were saying as an advocate, autism advocate and a family, your role here and your passion comes from then changing that into saying, yeah, we really need to focus on acceptance and inclusion.

Mercedes: 00:36:50

Yeah, absolutely. Oh, yeah. A lot of people don't think that their words matter, and a lot of people don't, you know, you know, they think, well, you know, it's just.

It's just them or it's just, you know, whoever's saying these things. But no, our words do matter. And it trickles into. It trickles into the way people perceive autistic people, the way that they treat them.

It impacts inclusion policies, all these things.

Brittany: 00:37:12

Exactly.

Mercedes: 00:37:12

And yeah, so, you know, a lot of people, they. They don't really see the big picture because they're not living it.

But, yeah, it certainly has an impact on families and autistic people in multiple ways.

Brittany: 00:37:27

And thank you for sharing that perspective. I think right now, specifically, parents need to hear that because there's a lot of shame going on right now.

And what probably feels like blaming and shaming, right? Like, oh, I must have done something. And I like how your teenage changing that to say, no, this is. This is wrong. Like, this has always been here.

And we need to shift that narrative.

Mercedes: 00:37:48

Yeah, we need to shift that narrative because it's always been the case. Like, even in the past, they used to blame moms for being like a cold mother. And they called us refrigerator mothers. We're.

We're to blame for our children being this way. It's just a continuous.

It's continued on historically, you know, we've been been named and this diagnosis has been used as pawns in different types of schemes. And, you know, so I'm very passionate about, you know, like, changing the way that we view things because it impacts people so deeply.

Shawna: 00:38:22

Yeah, I like that you brought up their refrigerator mothers, because that's what I've been sort of sitting with too, is it feels like we've taken a huge step backwards, you know?

Mercedes: 00:38:29

Yeah, yeah.

Shawna: 00:38:30

In the last week with the announcements and the latest research and quotation marks and released and I think, again, like, mothers don't need one more thing to feel guilty about.

And certainly if you've got an autistic child and you've got all these other things that you're trying to make sure that you're doing and, like, making sure you're looking into this and whatever, you don't need the sort of blaming or this idea of shame and guilt around your child having autism or being autistic.

Mercedes: 00:39:01

Right, yeah, absolutely.

Like, even without people, you know, blaming, blaming mothers, we naturally, as mothers without autistic children, we naturally feel guilty about everything that we're doing. We naturally feel like we don't know what we're doing. And like, like, am I making the right decision? Am I making the wrong decision?

And then, you know, throw in having an autistic child, you have really no idea what you're doing.

You really feel guilty about everything you're doing and don't know if you're like, doing it everything you can to help them this, and then throw that on top of, on top of people. It's just. It's so wrong in so many ways. So.

Shawna: 00:39:35

Yeah, exactly. Thank you so much for sharing your thoughts there.

And I think you do such a good job balancing sort of honesty and what's like real life while also celebrating your daughter's strengths. Are there some, like, unique ways that she experiences the world that you think others might miss or not necessarily appreciate about her?

Mercedes: 00:39:55

Oh, yeah, she's. She's just the best. Honestly, I. She's the most fun, hilarious, sweet, empathetic little girl I've ever met.

And so I think that also drives me to like, push this awareness and stuff because I'm just like, like you are losing out by seeing her in any sort of other light than what she is. But yeah, she, she appreciates the small things. She's got such a heart for every living thing.

She's obsessed with bugs and animals and like, she is just so, like, she, she just clings onto information. And I appreciate it so much because she's teaching me so many things, like, about bugs.

Like, like, she's telling me all these facts about bugs and I'm like, wow.

You know, like, I wouldn't have appreciated this if it was coming from anyone else, but the fact that I can see this with your passion and like, I'm just like, wow. Yeah, this is pretty cool. So, yeah, she, she's really.

She's changed me as a person, which I'm sure most parents of autistic children feel like they've changed since their daughter, that since their daughter, Their child's diagnosis, I should say, because they, they. They see the world completely differently and it really does have a ripple effect on the way you see the world too.

I, like, I just appreciate the small things and I appreciate up kindness and people, like, the qualities and people that I overlooked in the past. Yeah, there's just. There's so many things that she's, she's done to me and that I think has made me a better person.

Shawna: 00:41:25

Oh, that's so sweet. Thank you.

Brittany: 00:41:27

And I know I can't see your face, but you just absolutely light up. I'm getting tears just looking at the glow in your eyes when you talk about your daughter. And just so beautiful.

Shawna: 00:41:35

Of course.

Brittany: 00:41:36

And so thank you for sharing that. All the beautiful ways that you're embracing who she is. And I like how you also said, you know, she's made me a better person.

I feel like, again, as moms, we really think, think that our kids probably do make us better people in general and learn so much about the world. But your unique experience. Thank you for sharing that.

Shawna: 00:41:55

I was thinking something that I've seen you post on your Instagram is that you write her like lunch notes and they're always about these bug facts.

Mercedes: 00:42:02

Right.

Shawna: 00:42:02

And sort of using her special interest, it sounds like, or something she's like really into bugs and animals and then kind of tying that into maybe a hard thing which is going to school and not necessarily an eating know as well is something that can be anxiety inducing probably for her. And so bringing in this special interest of the bugs and writing those sweet facts, I think it usually is that you send in a new bug fact.

And then I was thinking, I'm like, wow, like, she can read so well. I have a son in sk and I was like, I could not write that note to him. And so. And now it all makes sense.

But I think that's such a beautiful way that you highlight something that's like, tricky for her. Right. Like lunchtime and eating and then bring in like, like that thing that brings joy to her, which is the bugs or facts in general. It sounds.

Mercedes: 00:42:48

Yeah.

Shawna: 00:42:49

So sweet.

Mercedes: 00:42:49

Yeah, absolutely. No, it's been fun because, like, I've been learning too. Yeah. Every day I'm looking into different facts about bugs.

I'm like, wow, that is actually pretty awesome.

Brittany: 00:42:58

Oh, me too.

Shawna: 00:42:59

I'm learning. I love your story.

Brittany: 00:43:00

I'm like, oh, cool.

Mercedes: 00:43:01

I didn't know that. Yeah, it's neat. Yeah, it's fun. Like, honestly, this journey, like, it's so. It's so unique and different than what you imagine it to be.

But like, things like that, it's like you're gonna run into all these like really cool, unique experiences that, that make you appreciate this life so much.

Shawna: 00:43:20

I love that. And whatever kind of wrap up questions was like, if you could change the conversation in one big way, what would it be?

And I feel like what you just said is so perfect. Right. It's like an Unexpected road ahead and being open to it. You're, like, coming across all these experiences that you would never have expected.

Mercedes: 00:43:40

No, never expected and. And likely wouldn't have experienced if your child was that, you know, child you envisioned.

You know, you know, lots of our children are never who we envisioned them to be, but having an autistic child, it's gonna bring so much joy and light and, like I said, unique perspectives and experiences that. That always will, at the end of the day, outweigh. Outweigh other things. So, know, it's. It's been. It's been great.

I wouldn't change her for the world, of course.

Brittany: 00:44:09

Of course. Yeah. I love that.

Shawna: 00:44:11

So thankful for all of your advocacy, and I think you bring such a unique experience as a parent, but then also coming from the nursing world as well, the medical world, kind of bridging those things. And the way that you present information, like I said at the beginning, is just so digestible and interesting.

So whether I'm like, clinician, I live and breathe autism, really every day. It's something that I'm very interested in. And so I know a lot about the topic. But still going through your Instagram always like, oh, I love that.

That's awesome. I'm gonna tuck that away for later. That's a really great strategy. Or. I love the way you put that.

And so I think you're just, like, breaking down walls and really helping with this idea of moving towards acceptance and really educating people, like you said, and understanding sort of the harm of us not moving. Moving towards the acceptance as well.

Mercedes: 00:45:01

Yeah. Thank you so much. I appreciate that.

Brittany: 00:45:04

Voice is one of hope, I think, and you've got this optimism and hope that we need in this time and in this world and sharing those beautiful pieces of what makes her so special and how she, you know, you just celebrate that.

Mercedes: 00:45:16

Thank you so much.

Brittany: 00:45:18

This has been such an honor to chat with you.

Shawna: 00:45:21

Is there anything else?

Brittany: 00:45:22

Are there any last thoughts that you want our listeners to. To walk away with?

Mercedes: 00:45:26

No, I don't think so. I'm just so grateful for this opportunity and. And happy to connect with. With you guys and happy to do it again and happy to connect.

Anyone else who wants to.

Brittany: 00:45:36

Amazing. Yeah.

Mercedes: 00:45:37

Fantastic.

Shawna: 00:45:37

So for the listeners, you can find her on Instagram at Autism Out Loud and certainly recommend following her account. It's like I said, just full of digestible little nuggets that you can take along your day with you.

Mercedes: 00:45:48

Oh, thank you so much. Much, guys.

Brittany: 00:45:51

Thanks so much. Mercedes, lovely to chat with you.

Shawna: 00:45:53

Have a good rest of your day.

Mercedes: 00:45:54

Thank you so much.

Shawna: 00:45:55

Take care. Bye.

Brittany: 00:45:58

So I'll start just with an introduction. Welcome to Neurodiversely speaking, where Brittany and Shawna. And this month in Otter. Sorry, I start that again. Welcome to Neuro Video. Sorry.

Before we go, we want to remind our listeners the topics we discuss in the podcast are not a replacement for professional medical advice. Please contact a professional if you have questions.

Shawna: 00:46:21

And just a heads up, we'll use both identity first and person first language to respect different preferences. We'll also see treatment and therapy since we come from a clinical space, but always with respect and a focus on what works for each person.

Mercedes: 00:46:33

See you next time.

Shawna: 00:46:34

Bye.