Join us as we chat with Jamie McCleary, the Executive Director of Autism Canada. Throughout this episode, she shares insights on her personal journey as both an autistic professional and a mom to a neurodiverse family while also shedding light on the amazing resources offered by Autism Canada for families & autistic individuals across Canada.

She kicks things off by diving into the challenges of navigating corporate environments while being true to herself. We chat about masking, how it impacts daily life, early/late diagnoses, and the resources Autism Canada offers to support individuals and families across Canada. Jamie’s insights are authentic & valuable, especially for anyone trying to figure out the complexities of autism—whether you’re a parent, a professional, or just someone curious about the experience. So, grab a comfy seat and get ready for a heartwarming and eye-opening conversation with Jamie McCleary. This conversation reminds us that representation isn’t optional — it’s essential.

Timestamps:

(01:28) - Welcome

(02:15) - Understanding Masking in Neurodiversity & Autism

(15:24) - Late Diagnoses

(22:56) - Navigating Parenting with Neurodivergent Children

(36:01) - Autism Canada Resources for Families

(44:56) - Community Assistance Program

(59:10) - Living In a World Not Designed For The Neurodiverse

Autism Canada Resources Mentioned In This Episode:

• Literacy program
• National Support Line for the Autistic and Neurodivergent Community
• Autism Junction
• Funding (by province)
• Community Assistance Program (CAP)
• Publications

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We have a library of resources, and we have an amazing family support department that provides kind of access to all of the resources that are around Canada. So we have everything provincially, and it goes from, you know, funding opportunities to services or supports in regions by province.

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

And I'm Shawna, behavior analyst.

And we're your hosts at Neurodiversally Speaking.

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

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

Let's get started.

Welcome to the Neurodiversally Speaking podcast with Brittany Clark and Shauna Fleming from Elemenoe, 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 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 him to stay up to date on new episode releases and show updates. Connect with us on Instagram Eurodiversity Speaking.

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

Jamie, we're so happy to have you here today. Yeah, of course. I was thinking about you and how you have so many hats that you wear too.

So when you and I, when the group of us met, of course, you're the executive director of Autism Canada, but you also mentioned that you're a late diagnosed autistic adult and a mom to children. So what a powerful mix you have of, like, lived experience and professional experience.

Yeah, it's definitely interesting. Keeps me on my toes, for sure.

Yeah.

Like, brings in so many different perspectives that you have.

So we're like, so, so, so excited to chat with you today because I think that you'll bring such valuable insight from each of those different perspectives and hats that you wear.

Yeah.

Awesome. We were thinking about getting started with this idea of masking. And what is masking?

And I think it's a newer term that we're hearing probably coming from the neurodiversity. How do you define masking? Or how would you explain it to someone who maybe doesn't know?

Well, I mean, we all wear masks every day. We all project that image of ourselves that we want others to see. And that's essentially what masking is.

It's that changing or altering yourself to fit into a specific scenario or, you know, purpose environment, anything like that. So with masking, for the most part, it comes naturally to people, you know, that you're supposed to behave a certain way in, you know, a library.

You don't shout in a library, for example. So for most people it's easy enough to just walk in and, you know, remind yourself, I don't yell in a library, I don't talk loudly in a library.

But for someone who's neurodivergent, masking is essentially taking every part of their personality as well as all of their impulses, all of their needs in that environment and shutting them off and making sure that people do not see how much you're struggling or how much this environment is difficult or how you're suppressing every urge you have in order to project this image of being in control, being calm, being regulated. So it's definitely different for the neurodivergent population than it is for neurotypical population.

And one thought I had while you're talking there is like, sure, for myself, who I would say I'm like neurotypical, I would go into a library and be quiet. But maybe that's the only time during this day really that I need to mask, you know, or like need to kind of like keep myself calm. Yeah.

Whereas maybe for neurodivergent individuals it's also coming up more frequently because our environment is not necessarily always supportive of neurodivergent needs is. Would you agree?

Yeah. And it can be situational as well.

So if you think of a job interview, walking into a job interview, you're, you know, you shake hands, you make eye contact, you speak directly. That is very difficult for people who are neurodivergent.

So for masking, that's that extra effort to check in and say, hey, remember to make eye contact, remember to do this, remember to talk to this person. So it's, it's a constant process of making sure that you are maintaining that mask in this environment.

So whereas, you know, you walk in and say, once this comes naturally, you know, I make eye contact, I do this. It's just that, that never ending process of maintaining that mask. So it's. Yeah, that's the gist of it, I suppose.

Yeah. Thanks for sharing.

Yeah.

And in your case, I must come up then for you at work and then, I don't know, as a mom or out in the community, what are some of the different ways that you Find for yourself, you end up masking or feeling like you have to be sort of this different person.

Yeah, absolutely.

I mean if I'm in the middle of an advocacy conference or an event, obviously it's, it's uncomfortable to be in a room with that many people or speaking in front of, of this, you know, majority of these people doing different things that are uncomfortable. But that mask is something that's, that's required.

You know, you have to, you have to maintain that control, find ways to regulate in this environment that is uncomfortable. And it's again that never ending process which is completely exhausting.

But as a late diagnosed person, it's something that I've been doing my whole life. So it's not, you know, I don't have to kind of do that constant check in.

It's just finally recognizing that those things are disturbing me and why they're disturbing me or why they're, they're uncomfortable.

Yeah, I guess that was going to be like a question I had for you as someone that was like late diagnosed. What do you think about maybe how you're masking pre diagnosis and post and do you think anything has changed?

Oh, 100 before I knew things bothered me but I didn't know what and I didn't know why. So you know that, that being uncomfortable in crowds, you, you have a lot of, or I did anyways, a lot of self doubt and a lot of self reproach.

I suppose when you are an undiagnosed neurodivergent because the whole world tells you you're supposed to be okay in this situation where that's not the case for someone who's an undiagnosed neurodivergent.

So you know, we don't necessarily understand why there's difficulty making friends or why there's difficulty being at a party or why the grocery store is so uncomfortable and things like that. So it's a lot of, of those feelings of you know, self, self reproach, self recrimination. But when you are diagnosed it's like, it's like a pass.

It's like oh, you know, I understand now. And then you give yourself a lot more grace.

So I think that's been the biggest, the biggest difference is, you know, it's okay that I don't like being on the subway. It's here's why, I understand why. Right. And then you just learn the tools to, to cope so you don't have to mask. It's just that self regulation piece.

And did you find, because like you said You've been doing this sort of your whole life, masking, but it's a relatively newer term and, like, being acknowledged. Did you find once masking was identified as a term and a concept that that in itself was really, like, validating?

Yes and no. I think a lot of it is societal as well, so. And then that's the reason that.

That it takes so long to diagnose girls, why more women are being diagnosed later in life. Because we mask. But we mask because we are behaving in a way that society has taught girls. This is how you behave.

Right.

So there's so many situations that it's just a matter of this is what I'm supposed to do. And that's. That's just what you do. But when you get to understand that this is, in fact, a mask, this is not an alteration of behavior.

It's literally putting on a mask, just like wearing makeup. This is what others are seeing, but this is not who I am, and this is uncomfortable. So it's. That term does.

I think it helps more with the neurotypical because it's such a concrete term to be able to apply to, you know, that change in behavior.

Right. And maybe build in a little more empathy around your experience. Well, thank you for sharing.

I think you've given such great examples, too, saying, like, when stakes are high, like a job interview, there's high masking. But then also going to the grocery store, you know, or being at the playground with other moms and kids, and it's got to be exhausting.

Oh, it is exhausting.

Yeah.

There are. There have been times where I spent a full day in downtown Toronto for work. So, you know, it's. And there was a.

There was a baseball game at the Rogers Stadium while I was eating on a patio with someone, and I slept the entire day, the next day. So it's just. It takes the bot. It takes a lot out of the body to. To be able to do that.

And.

And there has to be a reset at some point. So it's definitely. It's definitely hard.

Right.

And I'm wondering, as the executive director, that's a big role.

One if you have, like, some practices you put in place for yourself, like, you probably must have to go to Toronto here and there for work and those types of things. And then on the. My second question, there would also be around, like, things you're doing for the organization to educate people about.

I don't know if it'd be like, hir policies or ways that you guys structure things for your Staff or that sort of thing.

Yeah, definitely. I think a lot of that.

Maintaining that the ability to not mask or not have to mask comes from a lot of self reflection and a lot of implementation of daily practices to regulate that environment or to self regulate in some way so it doesn't get to the point where it's so hard that you need a full day or you reach the point of a burnout or a meltdown. Right.

So there has been a lot, especially since the diagnosis, because I am able to sit back and really think about what things are affecting me in what ways and then putting those into practice or recognizing the signs of reaching a point of stress that I can't reel myself back from immediately. So yeah, there's, there's music, there's like earplugs. There's a bunch of different things that I do for myself to kind of maintain that equilibrium.

But we do have a lot of different programs that we have. We, we do a lot as far as education goes.

So we do education programs that are geared to specific industries like retail or libraries and we show them how to recognize the behaviors of an autistic person so that we can avoid situations of meltdown.

If someone is extremely overstimulated, we want someone to recognize the difference between that and the difference between a temper tantrum or you know, the difference between someone who may be considered dangerous.

Yes, exactly.

So we can pull back, we can help people recognize it and help them either calm the situation down or how to help that individual get through that situation.

Right, right. Amazing.

And so it sounds like you're saying if you had some like advice or tips for other people would be like being very self reflective and sort of looking back on experiences if you're feeling t overwhelmed or even if they went well, probably looking back like what did I do that worked really well for me here.

Yes.

And then I wondered a little bit about if you give the same thought and I imagine you do to your schedule and making sure, you know, I don't book this like Toronto Day and then this other really busy thing back to back and try and scheduling that downtime. And you I would think probably advocating as well and saying, yeah, okay, that's not going to work for me to do these things back to back.

Yeah, you have to learn how to say no. Really do have to learn how to say no and how to have those boundaries. There are people who won't understand.

So really knowing yourself is key to that. And it's all experimentation, it's all learning what works for someone.

Whether it's only scheduling meetings during certain days or only scheduling a certain number of meetings during the day or things like that, that, that kind of allow you to organize the schedule or do what needs to be done. And there is a lot that, that does go into to that management process.

Right.

My, most of my staff is neurodivergent.

So, you know, recognizing that Everybody's not on 24, seven or not on, you know, nine to five is not necessarily that, that great window for work or someone might need an hour to just take a walk and decompress.

And there's, there's a lot of that flexibility that goes into it and a lot of recognizing that not every person is different or not every person is the same, not every day will be the same. And you have to be very mindful of those different working styles. Even for someone who's neurotypical.

I mean, we don't all have the best days where we're super productive between nine and five.

It's, you know, we might be great from nine till 12 and then all of a sudden we get in about, you know, another wind at 7 o' clock at night and it's like, oh, I'm going to pop in there and get this done.

So there does have to be a lot of flexibility and a lot of understanding with managers and employers because it does, it does factor into every, every person, not just neurodivergent people.

Right, right. And then leading into burnout and like signs of burnout in yourself.

Do you, are you, do you feel like you're good at sort of identifying if you' burnt out?

Yes.

I'm not always good at practicing, you know, but it's, I think that this is another one of the reasons that it takes so long for women to be diagnosed, because signs of burnout and signs of that breakdown are similar to the signs of depression. So there are a lot of women who are diagnosed with depression. Right. That is either unmanageable by medication or it just doesn't respond.

And that's because those, those things that are contributing to that burnout are not going away.

Yeah, right.

So medication's not going to do anything.

It's all about adjusting that environment or adjusting your own practices to ease that those pressures and kind of, you know, remove that burnout or, or figure out how to, to cope with those stressors so that that burnout doesn't happen.

And then the depression symptoms will ease and it'll become a lot easier to get through the days because you now recognize that it's not actually depression. It's not a chemical imbalance. It's literally your brain is trying to cope with this life that you have.

Right.

I did not know that. That is a new information to me. So thank you for sharing that.

Yeah.

And you mentioned, you know, the value of knowing yourself in order to set those boundaries and to sort of set your schedule. But then you also said, you know, you were late diagnosed and that it's so complicated for women and girls.

Do you mind sharing a little bit more about your journey and sort of what led you down the path to diagnosis?

Sure. Yeah. So I. I have three kids. Yeah. And my son, my middle child, he's currently 15. I knew he was different before he was born.

And so that kind of when he was born and he screamed when the lights were on and we changed his diaper or, you know, the hand dryer in the bathroom went off, I knew that that wasn't a normal response. Okay, so it got bad. It got to the point where, you know, I'd spend. I'd go grocery shopping and spend the.

The entire time in the cereal aisle at Walmart with my arms and legs curled around my child who was melting down in the cereal aisle.

Right.

So I did get some help with him, and we did get his diagnosis when he was three, just before he started kindergarten. And it kind of became that. Trying to understand and trying to help him through those various life stages as he got older.

And my oldest daughter, I started recognizing some signs with her of difficulties following certain processes and getting things done in a way that that was, you know, considered normal, considered natural at the time. So she was diagnosed with ADD when she was 7, which was a few years after that. From there, I had my youngest.

I knew something was going on with my youngest, but everyone tried to convince me that I just had autism on the brain because of my son. Cohen.

Right.

So I ignored it.

Oh.

And he was selectively mute. He's been selectively mute since he was about 2, but he is. He started to kind of regress, so he started kind of to go more into himself.

And then when he was 11, we had him. We received his diagnosis as well. So I had three kids over that period of time. My daughter was also diagnosed at 18 with autism.

Oh, my gosh.

Yeah. So when you have all these different types of autism living in the house, it kind of gives you a lot to. To take in when you're.

When you're thinking about the presentation of autism. Because not one of my kids is alike. And working for Autism Canada, I was working with adults who were on the autism spectrum and who.

We'd have conversations about late diagnosis and about recognizing signs of autism, and I started to kind of reflect on that. So the more I read about what autism looked like and what autism was and how it was, you know, how people became diagnosed.

Yeah.

I started to realize more and more that the reasons that I had struggled my whole life and the. The traits of my personality were absolutely autistic. So I did seek that diagnosis, which. It's not easy for adults to be diagnosed.

Yeah.

But, yeah, I did. I did seek that. The diagnosis. And I was diagnosed with dual adhd or combined ADHD and autism. Oh, wow.

And so you were already working at Autism Canada before you were diagnosed.

Interesting.

And among the three kids and sort of went through that process. Yeah, we're hearing that more and more. So thank you for sharing that. I hope that our listeners are kind of listening to that too.

And I know you said it's kind of hard to get that diagnosis, but. What. Thank you for sharing your story.

Yeah, no problem.

And then that must be, like, such an interesting thing to be navigating. Like you said, Brittany and I are both mothers, and being a mom is hard enough.

And then I imagine for you also, like, getting to know sort of the uniqueness of your kids.

And I think probably because you worked in autism already, you knew that there was so much variation, and, like, no two kids are the same, no matter what. And that can definitely be applied to the autism spectrum as well.

Yeah.

And so what's it like being a mom to these three neurodivergent kids?

There's never a dull moment. It is exhausting some days. But the things that. That we take for granted.

When you're thinking about children, you know, the loading the dishwasher is now like a Herculean. It's a Herculean task, not just a matter of saying, hey, did you do your chores?

Right.

Right now we have to. With one child, we have to walk them through the chores every day. The other one is, you know, a weekly reminder. Have you done your chores?

And the other one is, like, navigating her physical health as well as her neurodivergence to schedule the chores around what works for her. So there. There has to be so much leeway and so much grace that you give these kids, and it's a balancing act, you know, where.

Where do you draw the line between the child who's being a child and the neurodivergent child? So are they doing this wrong on purpose? So they don't have to do it again. Or is this something that we have to continually work on?

So it's definitely. It's hard. And it's hard being a neurodivergent parent, trying to.

To work through, you know, all these kids, educational, medical, and just that general trying to raise a successful human being.

And, like, you know, I imagine sometimes you might think, like, with the dishwasher example, okay, this strategy is really awesome. It works really well. And then you try with the next child, and it doesn't work at all. Back to the drawing board. What else can I do here?

And it doesn't even necessarily work every day, right.

Yeah.

If I work for two weeks, and then it doesn't work anymore. So you have to go back to the drawing board. You have to figure out what does work. So, yeah, it's. It's. And you know what?

It's frustrating for a lot of people.

My husband is neurotypical, and he doesn't always understand that this is why this is not happening the way you want it to happen or the way you think it should be happening. So there's a lot of learning that. That does go into parenting a neurodivergent child, for sure.

And flexibility, it sounds like. Right, exactly.

I think as a parent in general, you have to be fairly flexible of rethinking things, but this adds just, like, kind of an extra layer of flexibility. And then, like, you're saying you might find something that works in the short term.

Yeah.

But then it doesn't work long term. And so then every two weeks, I'm having to be really flexible.

Yeah.

Which is tricky, I would imagine.

Yeah, for sure.

And then when you. You mentioned, you know, kind of reflecting on your own experience and then how your husband is wired differently.

What are some things that you share with your husband? Like. Like, hey, I'm gonna shed some light here. Like, what are some of those?

Like, I don't want to say that you're, like, giving him advice, but, you know, for other parents, maybe.

Yeah.

And then for other parents. Right. Who are, like, trying to get a window into, like. Like what. Would you. Would you have any advice there?

That is. There's a lot of.

You really have to have an open mind when you have neurodivergent children, and you really have to be willing to learn and willing to adjust.

Just you have to pivot at a moment's notice, and you just have to be able to do that and kind of put aside those ideas of, you know, how you were raised, because somebody Might say, you know, if I didn't eat my dinner, I had to sit at the table until it was done. But if you have a neuro divergent child, they will sit there until the next day. They will not eat. They will sit there.

Right.

So yeah, you have to really put aside your ideas of what parenting looks like for you or what, you know, experiences or how you thought you were going to parent.

Yeah, right.

My husband and I always said, you know, we're not line cooks, we're going to make one dinner and everybody's going to eat dinner and that's going to be it. If they don't eat it, they don't eat it. Right.

But with my youngest son who has avoidant restrictive food intake disorder for his texture issues, he would not eat. Right, Right. So if we didn't make him something to eat, he wouldn't eat it. So he go, you know, he's on the lower side of the, of the growth curve.

And they said, look, you have to, you have to make, you just have to make food.

Yeah, yeah, yeah.

Everybody eats something different now and it's, it's chaos at dinner time. But you do have to make those concessions for how each of your, each of your children gets through every aspect of their life.

Thank you. I think that's a good, you know, reminder that flexibility and that importance of just acknowledging what they need at that moment.

And it might be different than what you expected or it is going to be likely different.

It will be what you expected.

Yeah. Thank you.

Reminds me of something that we see at the clinic too, and often are talking about to our therapists is with neurotypical kids, we have these expectations of what sort of a good day and a bad day look like. We don't expect them to be 100%, of course, like myself included, I'm not 100% every day and I don't expect that of my children.

And with neurotic typical kids, it might be more obvious that they're having a bad day. You might see like they're crying easily or something like that.

And certainly, I imagine you certainly see that with neurodivergent individuals too, where there might be more meltdowns or that sort of thing.

But other ways that you've noticed with your kids too that are maybe like atypical ways that you know that like, oh, you know what, today seems like a hard day for them, like thinking sometimes at the clinic we'll see the kids are pacing a little bit more, they're a little bit more jittery. Or something like that.

That.

Yeah.

And that it's, there's a lot more of bad moments or bad situations than there are bad days overall. So it's, you know, I had to teach my kids to check in with themselves, right? Yes.

And even, even as an adult, you know, I'll be sitting at my desk all day and wondering why I'm getting more and more frustrated and then realizing it's because I haven't eaten in a few hours. So you have to do that, check in. Like, do I have to go to the bathroom? Do I have to eat something? Am I hot? Am I cold?

Am I, you know, overwhelmed in this environment? So teaching the kids to do that and recognizing the signs that they have not is a, is key.

And you know, you might have to remind them, hey, have you eaten? When's the last time you ate? Did you sleep? Have you gone to sleep?

Like, what, what's happening that has led to this situation that is either a meltdown or just that extreme overwhelm. Yeah, but it's very similar to what you'd see in a neurotypical child. I was thinking extreme.

Yeah. But with a bit more flexibility. And I do think, I like how you said you're actually coaching them.

And I think all parents listening to this and myself included think, oh yeah, like sometimes we're always trying to kind of figure it out for them, but telling them to check in with themselves is so important. And so then you're saying like we kind of make that explicit. Coaching.

Yeah. Yeah. I mean, it's our job as parents to, to raise our kids to be successful.

Yeah.

But they don't necessarily have the tools to do that. So we, you know, there's, there's a lot of parents that will just do, just do and do and do.

And then you end up with an adult who doesn't know how to cope with the situation. They don't understand why they're reacting this way.

Yeah.

So it is a matter of, of teaching kids, every child, those self regulation strategies and those coping skills and those, those ways that they can use themselves, that they can practice every day to, to kind of make it so that they don't have to mask.

Right?

Yeah.

If they can learn these skills they don't need to mask, they can make this comfortable and easy for themselves.

And then do you have any ways that you make it a little more digestible or easy for them to kind of think about it?

Like do you have a visual on.

The fridge or something that has some of those things? Or do you have any tools that you use?

Yeah, so we did, we did a few different things with my, my oldest son, Cohen, and that was the traffic lights.

Okay.

Okay.

So with traffic, we were always like, you know, yellow light. You got a yellow light, Stop, let's do this. Or red light. If it was an extreme situation, it was a red light.

There are things like the thermomet, so you can kind of go through. How's your day? Let's rate your day on this scale. Or things like mood trackers or. Though I love those, I use those all the time.

Or just those habit trackers everywhere. So, I mean, I had, at one point, I had the habit trackers in every room of my house.

It was like, you know, brushing your teeth or having a shower or doing something, checking in. How is your emotional regulation? Are you angry right now? Why are you angry? So let's go through that. But there's a lot of, a lot more resources now.

So you have things like circle breathing or square breathing, and you can, you can go through all of these activities or have these things on the wall that show different emotions and have them see these emotions and kind of stop and say, where am I? Which one am I right now? So there are different things. Absolutely. And I love Etsy for that because Etsy has so much stuff.

So you can get all of these different posters and tools and things. It's just a matter of knowing your child at that moment and kind of helping them get through each situation in an effective way. Right.

And because you mentioned they're sort of all over your house, it sounds like you're using these as coaching moments, not just in that moment where things get really escalated. Right. Like you're, they're around and they're there so that we can reference this in the calm moments too.

Yeah. So I mean, there's, there's playroom posters, right.

And it's like emotion, here's your emotions and things like the, the stoplights or the traffic lights or the circle breathing posters so that those reminders are always there, that if they get into a situation, they know this is where they go. So they can go to that square breathing or go to that circle breathing or go to this emotional thing to explain why am I feeling this way.

And then they know when to either explain it to a parent or caregiver. You know, I'm feeling angry, I'm feeling sad, I'm feeling this.

Or they can do that, check in with themselves and find or pull out those tools that they've developed to kind of Self regulate.

Yeah. That's amazing.

And everything you're describing really aligns with what their research really supports in supporting the development of emotion regulation skills. Right.

Is that like practicing outside of the moment, finding the tools that work for you if they're visuals or maybe a keyword or something like that. And then that in the moment coaching is like really that key thing.

You know, we often at the clinic, at least we'll have parents come and say they know what to do when they're mad. If you ask them what to do, they can tell you exactly what they should do, but they're not necessarily doing it in practice because it's so hard.

Even myself. Right. If I get really angry, it's hard for me to pull on my tools, you know, never mind. A child that's brain still developing.

Yeah. It's not as easy as just going to the wall. It's like, okay, you know, sometimes you got to take them by the hand and take them over.

But it's, it's a process. It's something that you learn over time. So it's.

Yeah.

And some trial and error, I'm sure. Oh yeah, sometimes. And I think the other thing that you've highlighted really well is like not to expect perfect perfection.

You know, sometimes they're going to use those tools so well and I'm going to be so proud and other times I'm going to be leading you by the hand over to the tool and letting. Reminding you that it's available.

Yeah, yeah.

And taking those like small and big wins as a comm.

Yes.

And that important reminder that all. All your kids are different and all, all children are so different.

And that one might really love the circle breath, but then another one might like to label, you know, different ways. And so it's not just like one size fits all kind of thing.

Oh yeah, for sure. And it's, it's kind of. You really have to adapt your life to each of these children. I mean, one of my children really loves fireworks works.

One of them is really not a fan of big of loud noises.

Yeah.

Yeah.

You know, what point do you do with all these children and what point do you bring in one child and you know, do we figure regulation skills for this so that we can all do this and. Yeah, it's, it's. There's a lot that goes into it for sure.

Yeah. In those situations, like you guys must go see fireworks for the one child that really likes it, I would think.

And like, would you guys go as a family or do you guys Kind of split up. What are some strategies you guys have figured out as a neurodivergent family?

Well, we're actually, we're lucky in that sort of situation. We have a. There's a park near us, so they. They set them off at the park so we can stand at our. At the end of our driveway.

Anyone who likes to come can come and stand at the end of the driveway.

Yeah, but, yeah, there are situations where we will do things as a family, whether it's, you know, going to some amusement park or something like that. So in those situations, we did learn to go with the flow because we could make it till from like 9 till 11. We could make it.

And then the meltdowns were coming fast and furious. So we recognized that if it's really busy, it's not going to work. So you have to start planning that around busy times.

Maybe it takes a lot more research to go into something giving kids the option, or if you are doing something as a family and there is no option, it's having those tools on hand. So bringing noise canceling earmuffs or, you know, sunglasses. Each of my kids has their sensory support kit, so they bring that.

And if they find themselves overwhelmed by anything, they have their backpack with. With their things that they can use to kind of help them get through that situation.

And that's something I imagine you just designed over time, sort of organically. Like, I know one of them doesn't like loud noises, so we've got the headphones. Is that, Is that true, like.

Or did you have another way that you kind of came up with that strategy?

This was actually when I started working at Autism Canada. They have the sensory support kits, so I bought each of them their sensory support kit. And then we kind of. We customize them over time.

So one of them really likes a certain kind of fidget. So we just get the fidgets and we throw those in the bag. And, you know, one of them really likes something else. So that goes in there.

My daughter also has physical conditions, so those different supplies that can get her through those situations are in the bag as well. So it's, it's very, It's a nice base to have that sensory support kit with those base tools and to let the child build it over time too.

It gives them a lot of time for self reflection as well, because then they learn.

Yeah.

What works, what doesn't work, what they like, what they don't like.

Cool.

And kind of going through that.

Thank you. And then can you share with families, like, if they're listening to this and think, oh, I need one of those. How would one access that? That?

Well, we have them available on the website at our store@autismcanada.org and it's got the base tools in it. It's got, you know, the earmuffs, the sunglasses, a little stuffed animal in it for texture or for comfort.

The blanket for people who like to cover or wrap themselves tightly for that pressure. Oh, my goodness. The ball, the squeeze ball, and a fidget spinner and then one of the little poppet games.

So it has a bunch of different tools in there so that all of those sensory input or, you know, sensory overwhelms are. Are handable. Handleable, I guess, for lack of a better word. But yeah, yeah, they're. They're. They're great little tools to have.

Yeah.

And customizing them over time is great. I love squishmallows. I really love squishmallows. So I have a bunch of those little squishmallow keychains that I. I have one in my briefcase.

So if I had a conference, I have my little squishmallow.

Cool.

But, yeah, you can learn what textures you like and what sensations and things like that. So it's fun. It's fun. It's fun to do as a neurodivergent parent.

It's fun to kind of take these kids exploring and learn what they like and what they don't and what's fun and what's not fun and things like that. I love that. Thank you.

I was thinking while you're talking, like, what are some of the other things at Autism Canada that you guys are doing that families could benefit from?

We have a library of resources, and we have an amazing family support department that provides kind of access to all of the resources that are around Canada. So we have everything provincially and it goes from, you know, funding opportunities to services or supports in regions by province.

And they can give a lot of guidance on that, especially for people who are exploring a new diagnosis for a child. We have got guides that we're working on. So we've written a guide with an amazing, amazing pair of sisters on a cancer journey while autistic.

So you know how to navigate the cancer diagnosis. And it's a guide so they can print this out and bring it to the doctors if they're either newly diagnosed or undergoing treatment for cancer.

And we're developing them constantly. So that's something that we're all very passionate about.

We do a little bit of everything, honestly, we have Our literacy programs that actually do, we can provide them to corporations or libraries or groups of people who want to understand more on how to make an environment more inclusive or how to recognize the signs and to kind of integrate that into their daily practice or their workplace.

We train employers, we have got partnerships with job posting for neurodivergence, and then, you know, just giving workshops and things like that on different topics. We develop them, honestly, at a moment's notice.

It'll be the middle of the night and my family support manager and I will be texting back and forth and we'll have something developed the next day. So it's. It's that constant kind of navigating the landscape and, and responding. Right.

In a way that's helpful to the majority is the neurodivergent population. But obviously to do that, we need to incorporate the entirety of Canada so we have something for everyone. But we are here to help.

We are launching our national support line this week.

Yes.

And that is a support line designed to create connection. It's for connection. Loneliness and isolation is a huge, huge problem in Canada, and that goes for everyone.

But it's easier to access resources or to access something as a neurotypical.

So our support line is there to allow neurodivergent and primarily, again, autistic people to call in and speak to another autistic person about anything from, you know, trying to find a job or navigating a family's illness or they're just. They just want to talk to someone. Someone. Right. So that is there for that. That's a fantastic resource and we're so excited about it.

Yeah.

That's so amazing.

And I can only imagine, like, will.

Be so, so useful.

Now, before you guys had this hotline, did you have something kind of going that was similar, ish, or.

Yeah. So, I mean, our family, our family support department, which is really just two people, is. Has been there.

Next year we'll be celebrating our 50th anniversary. So it's been there for a while, but it's two people and, you know, there's. They're providing the resources.

So the ability to provide that one on one, whether it's for a conversation or to provide that support, has always been something we've had to do above and beyond which my, again, Dominique, my family support manager, is always willing to do. Right. But that has to come outside of the time that we're, you know, providing resources. Resources.

Right.

There's nine staff members right now, and we are providing the resources for all of Canada. And with everything that we're doing, we're, we're always on.

So I actually can't imagine keeping up with what's changing in Ontario is very challenging. And so I can't imagine for you guys, like picture a much larger team.

Yes.

For nine of you to really understand, even put these information packages together about what different programs are available provincially and then nationally. It would be like almost a full time job in itself. Just keeping that information.

Absolutely.

It's.

And I'm, we're so lucky, I'm so lucky to have this team because everyone is so, so passionate about what they're doing. Yeah, we're all affected by neurodivergence in some way, whether it's a family member or personal. And it makes it.

Obviously it's more, it's more than a job, it's a passion. Because changing the way that autistics are able to live in Canada is something that affects our lives every day.

So we want to make this change, we want to make things easier and we want to ensure that people don't have to struggle the way we may have struggled trying to find resources or trying to navigate this without the information or the understanding. So yeah, we are absolutely all doing what we can to make it a little bit easier.

I was thinking too, because like you said, you guys are all have lived experience in this space that you also wouldn't have to like, you'd have a lot of ideas, like you said, about things that didn't work or things that aren't working and be able to come up with a kind of solution yourselves.

Whereas like, yeah, someone like us would probably have to go and interview some people, chat with someone else, get this experience, you know, you guys have all of that under one roof and then must be cool and also maybe tiring at times like you said, but texting each other at the middle of the night and like both so excited, like, yes, let's get that toolkit out. It'd be so valuable. Or like that. The passion.

Yeah, it is, it is. And our board of directors is primarily made up of neurodivergence as well. So it makes us unique.

We're a fairly unique organization in Canada because we do have so much lived experience that we put into this. Yeah, yeah, it's, we're, we're all very proud of it.

Yeah. And doing like so much advocacy by educating, like you said, just employers about things. Parents.

Yeah.

And then I think advocacy within the neurodivergent community as well. Right.

Like talking about these are resources Available and like, this is someone you can talk to who's also neurodivergent, you know, like really closing some loops.

I think that other organizations or as a country we haven't really been able to solve because of that unique perspective you guys are all bringing to the program.

So.

Cool.

Yeah. And there, I mean, there's different. There's different advocacy that we do.

I mean, we consulted with Via Rail on their new fleet for making it, you know, more accessible for autistic individuals. We work on the national disability strategy.

So I do go to Ottawa a lot to work on that kind of strategy and advising companies on the Barrier Free act, which is the kind of the disability outline of what businesses have to achieve by a certain point in time. So, yeah, there's a lot of that national and widespread advocacy that we do to kind of implement everything that needs to be implemented. Very cool.

Going from like, individual change and support and advocacy all the way up to this, like, national advocacy. And again, just thinking of like nine.

Of you doing this.

Yes.

Amazing.

I work a lot.

Yeah. Yeah.

I love the passion and like, what a blessing for everyone to have the support of Autism Canada. Like I said, just all that unique perspective is so cool.

Yeah.

And it sounds like. I just love that you're so responsive to the needs, too.

And of course, because you're living it and breathing it, but that in the middle of the night kind of, oh, we definitely need this. It's going to come up tomorrow. Like, really, really responding to the needs that are in this community.

We. We find ourselves very responsive.

And I think that comes from recognizing that there are so many different types of neurodivergence that we have to kind of. We have to expand the lens that we're looking at things. Yeah.

So, you know, as an organization, we're not necessarily building a program or a strategy or providing this input based on autism.

As.

As you know, this one viewpoint, it's trying to incorporate the experiences of. Of everyone who may experience something in a different way. It's a lot, but it is.

Is very needed and it's something that's missing and has been missing for a long time in that advocacy piece.

Right.

Wow.

Now we are clinicians. As you know, I'm a behavior analyst. Brittany's a speech pathologist.

Do you guys have supports that you'd recommend for professionals like us that sort of work in the space doing treatment or therapy?

Yeah.

So we've got a few different things. We do have our resources. We have something called Autism Junction, and that's the Resources online, where it's.

It has everything kind of broken down by province as far as resources, but there are also some resources in there for caregivers and service providers. We also have our community assistance program. So that is a.

It's a brand new program that we have designed to sort of take that, that pressure off the wait lists in every province for assessments and for services and things like that.

And it provides a subsidy for families who are on wait lists or who are having to pay out of pocket for services because they don't have the funding yet. Debt. So we have this for service providers to apply and receive these, these funding subsidies on behalf of their clients.

So it's a, it's been a great, great resource for a lot of families who are just. They're struggling, they're waiting and they're struggling and they can't necessarily afford to pay out of pocket for exactly something we don't.

I'm sure you've seen it a lot.

We do. Like in Ontario, the wait right now is like five years for funding. And then I often say, like, it's such an unexpected expense.

You know, you didn't put that in your budget. And then it's not a small unexpected expense, it's a large unexpected expense. Oh, yeah. So that is an incredible resource.

And I was actually unaware of that. So I definitely note that myself. And then the junction. Sounds very cool.

Yeah.

Tell us a little bit more about that. You said it's.

Yeah, there's a lot on our website. A lot of resources and it's, it's kind of a great tool to go in and navigate. And we, we love hearing from people.

So if they find something that's missing or if there's something else they want to see, then we, we usually jump on it pretty quickly and we may already have it. It's just not there yet. So.

Cool.

We are constantly, constantly navigating the landscape and, and adjusting where we need to.

Wow. Amazing.

Yeah, I will definitely note those down. I didn't know about either of them, actually.

Yeah.

And would be a great resource to share with families because we often see families that have just gotten a diagnosis and we try and summarize everything and be like, Brittany and I write the same email probably every week trying to summarize everything. And if we could just be like, here's a really good link that has all the info. Yeah, that would be very helpful.

Yeah.

And I mean, we learn stuff every day.

Right.

We get stories from families and we get different things that we hear either on the News that we kind of respond to. And it's, it, there's so many resources we don't even consider that are incredible tools.

And it just comes from that awareness of the situation and that, that changing landscape. And you know, this app might be really great or this program might be amazing.

So it's, it's definitely, it's ever changing, always moving, but it's, they're all great resources.

Amazing.

And there's so much, like you said, there's a lot of the news recently about autism and then there's a lot on the Internet that's not evidence based or that's not credible information or, you know, like, it can be really hard navigating that as a parent who's potentially new to autism too is sort of saying like, where do I start? And so Autism Canada then sounds like an amazing place, right. To just start and then go by province and see what's out there.

And those are wonderful resources that we'll definitely share.

Yeah. And our family, our family support department is fantastic because if there isn't something there, people will email and we'll find it.

We'll do the research, we'll help them find what they're looking for and make sure that everyone who emails us can gets what they need so that they can, they can get through that. So.

Amazing, amazing. Do you have any clinicians on the team at Autism Canada? Any psychologists or physicians?

Yeah. So Dominique, our family support manager, is trained in psychology. Yeah, so we have, we have backgrounds.

A lot of us have backgrounds in psychology or our national support line Navigator is trained in psychology. So we make sure that we have somebody in there who has that background. But.

Nice. Yeah, yeah, yeah. Amazing, amazing.

Team.

Small and mighty.

Yes, we are definitely. Yeah, I love that.

Thank you. Yeah, just sounds like. So summarizing, sort of the Autism Junction is like a really nice resource broken down by province.

And then you talked about the literacy program. So information there, go check that out.

And then the new support line you mentioned, you know, you can call it and speak to someone who is neurodivergent about anything, right?

Yes.

And it could be an individual and, or a parent or family or just define that a little bit more.

So that one is the national support line is designed specifically for autistic individuals. So parents and caregivers can call our, our support navigator still and she'll still do that. Resource.

Amazing.

We have a peer support group that we're starting up right now so that parents can kind of of, you know, get together and have those conversations. It's just a brand new program that's kind of being launched early next year.

Wow.

But our, our support line, it's actually funded by CN Rail, which we are so grateful for.

Wonderful.

And it is, it is for autistic people. And there's no limit on what those conversations can be.

Cool.

You know, if you need help with something you need, you need advice on how to organize your fridge, if that's something. You know, it's a simple conversation, but it's really daunting for someone who may have issues with something like that.

So they can call and talk about that or you know, job loss. They just want to talk about job loss.

Yeah.

It's not a crisis line. So we're not kind of, we're not at that stage.

But it is a really good tool just for a conversation or for some guidance or input or anything like that.

That. Awesome.

Very cool. I was going to say. What are you tease. You guys have so many cool things going on.

Give us a tease of a couple things like coming up in the future that you're really excited about. And I know the national support line is something that you guys have worked really hard on.

And then this parent or DC Parent support group sounds amazing. Is there anything else?

There's always something else there. There's going to be a lot more guides that we're putting out next year.

So we're kind of drawing on the, the cancer guide and we're building from there because I mean, as a neurodivergent adult, you go through every situation that any other adult would go through, but it's navigating. It is not necessarily the same.

So we have a lot of lived experience in different things that we'd like to create those guides on just to help walk people through those certain situations. And then, yeah, the peer support group, we are working on creating the. It's a library of peer support groups, let's call it that.

Because, you know, we have. Have autistic people in different situations. So it might be eating issues.

So having a group available for these individuals who have eating issues can have a conversation with each other because they can share different tools and tips and things like that. Parents, parents can get together and talk about their struggles or what they've found that works and help each other walk them through that.

And it's just there's so much missing for, for people who are trying to navigate and just support. There's no support. And it's, it's interesting because when you speak to a clinician and this is anyone Right.

You, you go in and you talk to them about this and they're just like, well, you know, that doesn't sound bad or it, it sounds like this. It, you know, it's probably anxiety or something like that.

Yeah.

Where it's. You, you come from that clinical lens, it's not necessarily easy to understand.

Whereas if you speak to someone who's autistic and there's a fantastic place that I, I had used when I got my diagnosis and all of their clinicians are neurodivergent, so, you know, you talk to them and it's like, you know that feeling that you get when you lay on sheets with those things that's. And they're like, yeah, it's like the back end of a sponge.

I love that.

Right.

It's just that, you know, little. They can pick up on these facial expressions that might mean something or.

So it's really nice to have that, that kind of similar connection to be able to listen to things that are not being said or to read between the lines or, you know, something like that that you're not going to get from someone who doesn't understand.

Yeah, for sure.

Yeah. It doesn't have that lived experience. Yeah. Right.

Yeah.

It sounds a lot like. And I'm thinking like post pandemic life, life, you know, we all really felt that isolation more than ever. Of course.

And since then, you guys have really, it sounds like, put so much effort into building community.

Yes.

And whether that's through advocacy. Right.

Sometimes community can be built by educating others by also, but also by setting up these amazing programs that really facilitate community because we know now, I think more than ever the importance of having those community connections. And not just like you kind of said a therapist telling you this is what you should do. It's like I actually just want to feel understood.

Yes. Yeah.

And I mean, neurodivergent people in general, and again, especially autistic people have difficulty with friendships for the most part or, you know, starting a conversation or maintaining friendships and things like. So there's all of these different social factors that, that contribute to an autistic person's experience.

And we don't feel any differently than someone else. You know, we may not have a lot of friends, but we're still lonely.

We just don't know how to change it or we don't know how to make it better or, you know, find this community that understands that if we don't text back in an hour, it doesn't mean this.

Yeah, yeah.

So having that, that again, that lived experience, that understanding of what it means to be a friend or what it means to be someone interacting in a social experience is really, really key to feeling understood or to feeling included or belonging. So, yeah, we want to. We want to really make sure that that is something that's available.

And I think that's such an important point.

Brittany and I were actually just at a training last week, and they were talking about motivation for social interactions for autistic individuals being lower. And both of us were like, hold on a sec. I don't think. I don't think the wording of this is quite right. And so I love what you're seeing here is.

I think sometimes there's this misconception that people with autism don't want to have friends or don't want to be social. And we actually hear that from parents, too. And it's like, I think it just looks different than what you're thinking.

And so I love that you're talking about that.

Yeah. And it's. There's so much more that goes into it. Like, you know, somebody can say, hey, do you guys want to go for lunch?

Yeah.

Great. Nobody thinks about it. Right? It's. Let's go for lunch.

Right.

But. But for an autistic person, they're thinking, well, that restaurant's really, really loud. I don't like that place.

Their food, they don't have the kind of food I like, so I'm going to pass.

Right?

Yeah.

Again, it doesn't mean that we don't want to. We would love to be able to go do this, but there's so many different things that either cause anxiety or fear or we know we just can't cope with.

So it's. Again, it's not a matter of being a bad friend and saying no all the time.

It's just that these environments and situations where we are creating these interactions are not designed for an autistic person or they're not designed for the kind of interactions that are comfortable or natural for us.

That's such a good point, because when we're socializing, so often we're going to a restaurant or a movie theater or a play place. And, you know, like, all of those kind of things are very. Can be very overwhelming from a sensory perspective.

Yes.

So then I like what you're saying there. It's not that I don't want to, but it's going to be easier for me to just say no, because I know that's not going to be a good experience for me.

Yes.

I was Also thinking like the executive functioning sort of associated with a vague comment like, let's go for lunch. Right. Could also get missed where you're just like, yep. But then no one's really sure who's doing it where. And I'm like, where are we?

Yeah.

And like initiating that too is like a lot of planning and such that if you're neurodivergent, I'd imagine you might think, like I said, yes, I'm good.

Yeah.

Right. And then you're waiting for the person to come back to you with more information potentially.

And then the other person might also be waiting for that information.

Yeah.

So it might be like a really. Just a miscommunication.

Yeah.

In that way too. That might be unexpected.

Yeah.

And it.

There's, I mean, if you're, if you're a person who needs to have all the information right away.

Right.

Then waiting for that, like somebody says, well, let's go here. Ah, you know, let's try this place. Or let's do this place. I'm not available next Saturday. Can we do it Thursday?

And you just have all these things flying at you without someone saying, saying, let's meet for lunch next Thursday, this place. And then you're good. Right? It's. It's. Yeah. Trying to navigate. Well, did we decide on this? Is this Saturday? Is this Thursday?

Is like this place or this place? And it, It's a lot to try and organize in your mind. Yeah, exactly.

It's not that I don't want to. It's that you sort of lost me along the journey here. Thank you so much. I think that's such an important part. Point.

Is there something sort of like one final thing that you would think you wish more people understood about autistic people, Adults, whatever.

Yeah. I don't remember where I heard it, but they were saying, you know, weird is wonderful.

Yes.

And I think that's where so many autistic people get lost along the way is that someone looks at them and says you're weird automatically. That's it. You know, kids don't get invited to play dates. No one comes to birthday parties.

Or, you know, adults are left outside of interactions because they say or. Or interact in a way that seems odd. And it's that recognition that we know two people are. Are the same.

So every interaction you have with every other person on this planet is not going to be the same. And we need all of these neurodivergent people.

The world would be so boring and so uncolorful without all of these different perspectives and all of these different things that, you know, you might not think about as a neurotypical person.

Yeah.

If you think in a very linear way, you're only going to follow that line.

Yeah.

But if you're off the map, you're going to find things that, that, you know, don't come out necessarily. So it's. Autism is not. It's not a negative. It's hard, for sure. It is very hard.

And it is not easy to live in a world that is not designed for autistic people. But it is not something that should be seen as a negative as a consequence, as something we need to fix. We don't need to be fixed.

If you fix us, the world goes back to boring and nothing ever happens happens. So we'd have a lot of problems.

Not solved, I think, for sure.

And that's all it is. You know what? Let's fix the situations. Let's make it better.

If we have a society that is absolutely baseline accessible for everyone, there are no accessibility issues because everyone is happy walking into the situation. So, you know, teaching our kids that difference doesn't make you weird. It doesn't make something bad. It's just different. Different.

So keeping an open mind and, you know, being kind and all those things, it's, it's.

That's really the big thing is that love that all these people are trying to say, you know, here's why autism is bad and here's what's wrong and here's how we fix it and here's how you prevent it. And you know what? My kids are incredible. I wouldn't change my kids for anything.

I can see the behaviors that go on with some of these neurotypical kids. And I'm like, thank God. That's. I love that, too. My kids are autistic. You know, it's. It's just a different life. And it's all about adapting.

It's all about being strong, finding your people, and making it work without finding anything broken. Yeah.

I love that.

That's beautiful.

Thank you.

Thank you. What a powerful message to leave us on. So thank you so much. Of course, we're going to link all of those amazing resources in this show notes.

So Autism Canada, the new support line, and the autism junction and all of those incredible things.

And I was gonna say if you have any other links or things that you love as a mom, as an autistic individual yourself, and then also, of course, in your role. So we'd love to share anything else with our listeners, too.

Sure.

Thank you so much for your passion and your commitment and just, you know, please keep reinventing things in the middle of the night and just response to the needed thank you, amazing team for all that you're doing and we are so grateful for your time today. I know that parents and clinicians listening to this are just going to take so much away from it, so I can't thank you enough.

Thank you. Thank you so much.

Perfect.

We did it, guys.

Yay. That was incredible. You're amazing.

It sounds very cool. I love your job.

Yeah.

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

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.

See you next time.

Bye.