Autism and the Pursuit of Happiness: With guest Nakia

Nakia, a mother navigating the complexities of raising a non-binary teenager with autism, joins hosts Rosie and Sarah in this deeply moving and enlightening episode. 

Moving away from the medical model to focus on cultivating joy, Nakia shares tangible ways that friends and community members can provide genuine support. For example, the simple act of picking up specific preferred foods, or creating inclusive spaces by using plain language.

The conversation also dives into the medical and therapeutic landscape. Nakia offers a powerful call to action for medical professionals to assume competence by directing questions to the child rather than parents. This episode is a masterclass in advocacy, autonomy, and the power of joy in the neurodivergent community.

Show Notes & Resources:

• Proloquo2Go: An award-winning symbol-based communication app (AAC) that gives a voice to those who cannot speak.
• NeuroTribes by Steve Silberman: A groundbreaking book on the legacy of autism and the future of neurodiversity.
• Feminincing: A resource and platform exploring the intersections of feminism, identity, and advocacy.
• Autism Self Advocacy Network (ASAN): A nonprofit organization run by and for autistic people, advocating for disability rights and systemic change.

Transcript

SPEAKER_04 0:01

A better world for autistic people is just a better world.

SPEAKER_02 0:07

Yeah. I love it. I love it. Put it on a poster.

SPEAKER_00 0:13

There, the mums, mums, mums, mums.

SPEAKER_01 0:21

My husband was really, he wants another bookshelf where the acoustic panels are. Um, but I told him just just think of how the audio quality on your work calls is gonna be so much better now.

SPEAKER_03 0:34

I do uh have sympathy for the bookshelf. Um yes. Yes.

SPEAKER_01 0:40

Never enough. Look how many bookshelves we already got.

unknown 0:43

I know.

SPEAKER_01 0:44

This isn't even all of them. Apparently, bookshelves are good for audio quality, though.

SPEAKER_03 0:50

So they've got so much material muffling the audio. Yeah, it is actually.

SPEAKER_01 0:56

Oh, Sarah, you got a little mic clip. I like that.

SPEAKER_03 0:59

Yeah, I um this is like a little tripod and it can go down and it just has enough space for the mic doing it. It's doing the job. Joy sound okay?

SPEAKER_01 1:08

Yeah, you sound great. You sound great. Cool. We can go ahead and get started, huh? Hello, and welcome to moms of the millennium. I am Rosie. You can find me on the social medias. I'm at Rosie the Red Graham on Instagram. I'm at Rosie the Red Talk on TikTok and Rosie the Red Reddit on Reddit. All right, that's it for me. Sarah, tell us about you and where you can be found.

SPEAKER_03 1:33

Yeah, you guys can find me on TikTok at uh zarina.oosman, and you can also find me on my website, zarinaoosman.com, and I'm a filmmaker, and you can find some of the projects that I've worked on on the site.

SPEAKER_01 1:47

Today we have a very special episode because we have a special guest. Our special guest today is Nakia. The topic for today, the reason we asked uh Nakia to come on, is to talk about children who are on the autism spectrum. We've talked about this a little bit in the past, but often it is not explicitly mentioned. The only book that explicitly mentioned it was How to Talk. So out of all of those books, only one actually mentioned this topic. I think this is a really important topic. You know, whether your kids are neurotypical or neurodivergent, it is good to be aware of these type of issues. Um, can you please tell us a little bit about yourself?

SPEAKER_04 2:30

Well, I am a technical writer and an accessibility consultant. I have a uh non-binary teenager. So if you hear me say say they, them, that's because uh my kid prefers they and them. My kid was diagnosed at the age of three. Over the course of this, I've I've seen a lot of different approaches to supporting neurodivergent kids. And, you know, just like any parent, we're we're winging it and hoping that we hit all the right spots.

SPEAKER_01 3:09

Thinking three sounds a bit early. I don't know if that's uh what age you typically get a diagnosis, or how did how did that happen?

SPEAKER_04 3:17

The average age of diagnoses is starting to go down as awareness um develops, um, both among parents and among medical practitioners. Usually what happens is someone will go to an early childhood checkup and they'll have concerns about milestones missed, or the doctor will note, hey, your kid isn't quite meeting the milestones, and we're really concerned about that. Then there will be further evaluations, and one of the things that also can put off the age of diagnoses is the availability of some of these specialists. One of the reasons that my kid got diagnosed so early is because we moved to a big city with a very well-equipped children's hospital. Um, my kid's pediatrician practically tackled the appropriate specialists as they were coming down the hallway one day. So we were both in the right time in the right place, and we also happened to get lucky in terms of, you know, all the specialists coming together at the same time. It is not uncommon for parents who live in smaller towns, more rural areas, to have to wait 18, 24 months just to be able to see someone who might be able to begin that diagnostic process. Kids who have missed more milestones or um have particular types of presentations. For instance, my kid is nonverbal in that um my kid does not use oral language. They read, they write, but the the talking with the mouth doesn't really happen. Things like that can help specialists spot it much earlier than a kid who is maybe socially inept, but are they meeting other milestones?

SPEAKER_03 5:27

So getting that um diagnosis early probably helped you strategize a bit uh earlier than uh some parents might not have had that opportunity. And did that help you, or what was your thought process when you uh got that information?

SPEAKER_04 5:42

I wouldn't have called a thought process, I would have called it a panic process. Okay. Because in terms of strategizing, and unfortunately, this is a very common thing among practitioners who work with autistic children. The focus is so heavily on early childhood and in the present, you don't get to think very much about what their adulthood would be like, what their working life will be like. I mean, heck, it's hard for neurotypical people to make friends as an adult. Imagine what it's like, unfortunately, especially when you're talking about early childhood and you're trying to get a diagnosis, that can be incredibly disruptive to things like setting early routines and connecting with kids early on. So getting into preschool was something that I was panicked about. And, you know, in in terms of like elementary school and thereon, what I got almost no information about was there's a lot of talk about how how to manage things like behaviors and basically how to make an autistic kid easier for um professionals or parents to handle. Um, I want my kid to be happy. Yeah. And there is so little about how do you support a kid in determining their own path through life when there's such heavy infantilization, both early on in early childhood when the differences aren't that stark, and later on when I mean some of schoolmates are driving because I have a teenager. When I enter into medical settings, people talk to me as if I am the expert on this kid and not my actual youngster.

SPEAKER_01 8:02

Can you talk more about that? Like how to prepare for adulthood and everything, because I think it's changing with social media. Like now there are actual adults with autism who make content on social media and have a lot of followers. But I do think that that was very the case that it was always the focus was on children.

SPEAKER_05 8:20

Yeah.

SPEAKER_01 8:21

Never even included teenagers or something. So how do you how do you see that part of the the process?

SPEAKER_04 8:29

Well, I have to say, autistic adults, I mean, now they're there definitely more of them and more autistic teens online. Some of the first autistic adults to be open and vocal online. I am deeply grateful to them. They are the ones that helped me figure out some important things, some core principles that have helped me with um my kid. Uh things like this is going to be something that you hear um a lot in discourse about um disability in general, but specifically autism, presuming competence. For instance, I was talking about the medical setting. Doctors will ask me if my kid is feeling pain when my child has a device that they can use to share whether they're in pain or not, just how much pain, where it hurts, and even if you give them a little bit of time, how they think that pain got to be. We're talking about a kid who spends a lot of their life in school. I may not know how they got that scrape on their knee because I'm not on the scene. In almost no circumstance would a neurotypical kid be treated that way. You go in um with the teenager and their parent, and thankfully, now they're trying to shift things more towards centering that teen's experience. But for autistic teens, it is still very much focused on parental input. I'm trying to advocate for this kid um to be able to speak for themselves. And I've spoken with doctors like just give this kid the time that they need to ask the questions that they have, explain their medications to them, um, and just generally treat them like a neurotypical patient.

SPEAKER_03 10:35

Do you think um how like doctors' appointments are like so short generally? Do you think there's this capitalism urgency thing that doesn't give the attention that autistic kids might need to really express themselves?

SPEAKER_04 10:51

Part of it is that, but it's not entirely that. One of the things that I have done, especially in non-emergency situations, um, especially for follow-ups, we can prep questions before the appointment. I can tell the doctor before we start, the kid has a couple questions and run the appointment more efficiently. It's partly a matter of managing not just what doctors tend to default to, but also with parents, it's a process of letting go in a world that tells you that you will need to hold on for the rest of your natural life.

SPEAKER_01 11:39

Um I'm curious about uh the communication device. How does that work? So do they just type and is it like a text-to-speech thing, or is it an iPad, or how does how does that work?

SPEAKER_04 11:51

It is an iPad with a program installed, um, dedicated program installed. There is a text-to-speech option, but there are also menus with common phrases, common terms organized under subject matter. So if we are going to the grocery store, I can open the food menu. If we're in the produce aisle, I can open fruits and vegetables menu. And there will be icons and text. They come with defaults, but you can also tailor it a great deal. And that's another thing that has been fantastic in terms of autism awareness, developing greater cultural sensitivity. The fruits and vegetables that a Latino family might be shopping for aren't quite the same as you know, your standard white American family, so on and so forth. So we have our tailored menu for things that we do every day, for things that the kid encounters rather frequently, like doctor's appointments, and for things that the kid is particularly interested in, like the kid is learning to code. We have icons and terminology for both the language that they're learning, the coding language that they're learning, and also terms for problems, so I can go in and help them figure them out.

SPEAKER_03 13:30

That's really cool.

SPEAKER_04 13:32

I realized that, like, wait a minute, do these folks know what a syntax error is?

SPEAKER_01 13:40

I do, I do.

SPEAKER_04 13:41

I'm editing on the fly. What is this app called? The app is called Proloquo2Go. And I can give you uh information on that if you want to put it in the description later on. The app is so pricey. Um, we were only able to get this device because we live in a very pricey school district, and so this was granted to the kid by their school. And that's not something that all families have access to. And that's another thing that I've been really concerned about, especially in terms of accessibility, not just in the way that I usually talk about it, but also financial accessibility. If we don't make greater strides in these, we're going to fail to connect with a lot of humanity that way.

SPEAKER_03 14:40

I remember you said that there aren't a lot of good books about uh raising autistic kids, and mainly the resources that are insightful are people online or people that you talk to. Um, is that how do you feel about that guy?

SPEAKER_04 15:00

There are an increasing number of books targeted towards autistic teens. There are some great books by autistic adults. I have not found a guide to support your autistic kid from early childhood up through young adulthood. I have not found one that I would particularly recommend.

SPEAKER_01 15:28

In in book form, you mean?

SPEAKER_04 15:29

Yeah, not in book form. Um, what I have had to do is look at these books for autistic teens and the books by autistic adults and kind of backform from there.

SPEAKER_01 15:44

Are there any creators online that you can recommend?

SPEAKER_04 15:47

I got started with um Steve Silverman, who wrote NeuroTribes, very much focused on adults. Well, the late Steve Silverman, rest in peace. And there's also feminine sing, she is an autistic adult with an autistic daughter. She processes both being an autistic adult, but also raising an autistic child with a view to helping the next generation of autistic adults be more empowered. I would also recommend, speaking of empowerment, the Autism Self-Advocacy Network. I've learned so much about what it means to develop as a self-advocate, as an autistic young adult and further into adulthood, and also more about what a neurodivergence-friendly world will look like. Between those three sources, I've really been able to help my kid articulate what a future will look like for them at the helm of it rather than other people figuring out what their life, how their life will be shaped.

SPEAKER_01 17:10

Yeah, thank you for sharing. Um, I'll put links for all of those in the show notes for the listeners so they can look those up. One thing I wanted to that that sounded quite interesting for me is how to make the world more friendly for people who are, you know, want to be allies or want to help build this better world. Like what can we do?

SPEAKER_04 17:30

Sort of setting aside my mom of autistic kid hat here and really putting on my accessibility consultant here hat here.

SPEAKER_01 17:40

Yeah, yeah.

SPEAKER_04 17:42

One of the things that um ASAN, Autism Self-Advocacy Networks, does is that they summarize major news events in plain language. Plain language is a the term of art within accessibility support services and strategies. Adapt language so that it is more inclusive to a wide range of experience and neurodivergence. Some examples of plan language principles are eliminating jargon and slang. Highly contextualized language, language that you have to be in an in-group to know, excludes people who aren't in that group or could not pick up the meanings of those features of language from the social context that they were in. One thing that I've noticed as the mother of an autistic person is that I'm slightly neurospicy myself. And as a result, there's a lot of, say, African-American vernacular English that I didn't pick up because it was all in a context that wasn't spelled out for me. So yeah, mom of autistic person to hey, I'm autistic, that that that's a that's a pretty strong pipeline there. Not just um plain language, but one of the things that ASAN also does is encourages autistic people to speak up about the policies that affect them. Because for a long time it's been, you know, parents, usually mothers, standing up and saying, My child this and my child that. And I'm thinking, yeah, you can do that for about 18, 20 years, but at some point we're gonna expect to see your child who is now an adult speaking up for themselves. In terms of what things that can happen in the workplace, a lot of us are working remote, and that is fantastic because it allows a variety of perspectives and neurostates, as it were, to find ways that make being productive comfortable for them. Um my child is autistic, my child is also a snarky teenager.

SPEAKER_01 20:15

So yeah, yeah.

SPEAKER_04 20:18

Things like being able to have the camera off sometimes because that is that is just so much more comfortable because you don't have to regulate facial expression. If you have to do something to help you concentrate, you're not distracting other people. I put my hand up to sometimes knitting in long meetings, it just helps me focus. Things like having clearly laid out expectations socially and in the workplace. I love my Microsoft planner at work because everybody knows what needs to get done, when it needs to get done by and who needs to do it. Also, you know, speaking of contextual and culture and clear responsibilities, things like don't say you should stop by sometime. If you have no interest in having them stop by sometime, being more mindful of your language and recognizing that if you spell things out for people, it helps with cross-cultural communication and it also helps with neurodivergent communication.

SPEAKER_03 21:32

I think all the things that you're saying also help like neurotypical people too. I think like we could all benefit from all of this.

SPEAKER_01 21:39

Oh my god, the cameras in the meetings. I I don't even normally have trouble controlling my face, but I feel so self conscious when the camera is on the whole time and it gets really exhausting. You know, I'm like, oh, did I take too many drinks of water during this? And are they gonna think I'm weird? You know?

SPEAKER_03 21:57

Yeah.

SPEAKER_01 21:58

Even though I know that nobody cares. But yeah, no, I I think I think a lot of neurotypical people would like that stuff too.

SPEAKER_03 22:05

The the thing with accessibility um improvements is like it it benefits everyone. Ramps, I benefit from a ramp, even though I can use the stairs. Some things just make life easier for everyone. And like the cute clear communication and specificity that eliminates so much miscommunication. And it's just it's just better.

SPEAKER_04 22:25

That's what I kept telling everyone when I turned myself into the accessibility police at my job. Like it's good for you, you'll like it. And it was, in fact, good for everybody, and in fact, they do like it. So I guess the answer is do interactions with people better, and everyone will like it.

SPEAKER_01 22:55

We've talked before about kind of the idea, or I know Sarah has in some of her fiction the idea of a matriarchy, and a matriarchy is not a gender-swapped patriarchy. I say this all the time. Okay, the Barbie movie, I liked the idea of the Barbie movie, but Barbie land is a gender-swapped patriarchy. It's just a patriarchy where the Barbies are the patriarchs. A matriarchy centers children. And when you put your focus, every aspect of society, focus on protecting the most vulnerable, whether it's children, disabled, elderly, it benefits everyone. The most vulnerable are protected, then everyone is protected. Um, and I really like that idea. Yeah. So maybe if we had a matriarchy, we could take better care of everyone. And yeah, I mean, is patriarchy doing well for men? How are men doing? You know, are they okay? Are they good right now under patriarchy? It's not even good for men. Yeah, patriarchy is a scam.

unknown 24:00

Right?

SPEAKER_01 24:01

Yeah, I mean, not even the men are like they're miserable, man. They're miserable. Have you seen them?

SPEAKER_03 24:07

Um, speaking of that sustaining life and uh actually creating joy, I remember, Nikia, you said once joy is a priority, and that's how you approach mothering. How do you cultivate that? And what does joy look like between uh you and Frizz? And like, what are those moments? What do they look like?

SPEAKER_04 24:29

I've learned to prioritize joy in the little things. Trying a new fruit that we turns out we like. Seeing, of course, now it's spring, the new bunnies in the neighborhood and the ducklings. Aww. You know, I talk with the kid about um a new book they seem to be enjoying. My beautiful child, light of my life. Could you coruscate over there for a second?

SPEAKER_01 25:00

Do you ever worry about getting enough vitamins and minerals? Then don't ask me because I can't help you. We don't have any sponsors. Not because I'm above it. If you're on any marketing teams, hit me up. I will hawk your product for money. But I'm just recording this little section here because speaking of money, we are using the free version of Zoom. So after the 45 minutes, cuts off, and we went on another little tangent. So that's why the next part is gonna start on another topic. Nakia is talking about another kid she knows who has autism. Take it away.

SPEAKER_04 25:34

So that was when a lot of that was getting started, and the kid got got diagnosed kind of on the tail end of that.

SPEAKER_01 25:43

So sorry, you're talking about your friend's kid?

SPEAKER_04 25:47

Or sorry, I yeah, so um my friend's niece is several years years older than my kid. My friend's sister just went through the height of that anti-vax movement and a lot of really hostile stuff about autistic kids. My kid was born kind of on the tail end of that, so I didn't quite have mother screaming in my face, why did you vaccinate your child? That happened though to your friend's uh sister or um not to my friend's niece, but to other um parents that I've connected with. Yeah, yeah. Their kids are in their early twenties. Their their kids were getting diagnosed when a lot of that was really going wild. Thankfully, I did not quite get that, but unfortunately, I did encounter a lot of scenes where parents were acting as if their autistic child was the worst thing that had ever happened to them. A lot of, oh well, I wanted to have some small pleasure, like, you know, just like being able to go out to lunch with a friend. And for parents, I mean, you know what an operation that can be. Sure, sure. But these parents may have three kids, but somehow it's only the autistic one that is making this an ordeal. And I'm thinking, you know, you have three kids under 10. That was going to be a job, no matter how, no matter where your kids were on in terms of being neurodivergent, that that was gonna be an operation. Things like wearing t-shirts, like you can't scare me, I have an autistic kid. I mean, when you're an adult, it's that's just that's just mean. But if your mom is wearing a t-shirt about that, about you. That's funny because right now I am wearing a shirt. Of course, this isn't video, so I will describe it. It's a black t-shirt with you will have to go through me in the colors of the trans pride flag. And being non-binary is under the trans umbrella. My the kid being non-binary was another thing where I've really had to advocate for my kid to be seen as they are.

SPEAKER_03 28:36

I think you said at one point in a different conversation that the autistic kids are fine a lot of the time, it's the parents that are awful.

SPEAKER_04 28:46

And that has made, I guess, like kind of getting back to the whole seeking joy thing, that has made that a little bit more challenging because I've sought out, you know, group activities for the kid to um meet other kids, do some fun activities, games. Um, we are going to our first school dance, which is but yeah, so I I seek out these opportunities, things like photography classes because the kid has a really good eye for color and composition and things like that, much better than I do. But they will not teach me. Yes, seeking out these adapted classes so that the kid can find joy in learning about the world, interacting with kids in ways that work for them, and also with so much that they struggle with, having a win.

SPEAKER_01 29:52

Yeah, something they're good at, huh?

SPEAKER_04 29:55

Um, is something that I strive to give my I strive to give the kid um at least once a week. Sometimes I suspect this kid is on to me in terms of giving them a win that seems kind of set up, but they have enough legitimate, I I did not tee up that one for them wins that maybe the occasionally look, you did the last part of a thing that I totally did like three quarters of for you, and I'm gonna act like you did the whole thing. Just just because uh you you you look like you can use a win. But yeah, recognizing that the point of life is not to meet these goals that doctors and teachers and therapists set out for them, but the point of life is joy, and I seek joy with my kid on a regular basis.

SPEAKER_03 31:01

And I think that's so like wonderful because there's so many people who and I think like a lot of the um awful parents that are that blame things on their autistic, don't even think of life in that way, and that's why they think it's hard. They don't have a joy-seeking initiative in their own selves. That's not the priority for some people. It's hierarchy for competition or any number of other things, social, whatever, but joy, uh and at the end of the day, that's the stuff that makes life lovely. That's the stuff actually. I I appreciate the intentionality and the attunement that it takes to cultivate that kind of joy. So I really appreciate that you're thinking this way. So yeah.

SPEAKER_01 31:49

Yeah, and one of our Sarah's notes, uh, it was about how the advice can be very medicalized, very clinical. And of course, yeah, if you're a medical professional, you know, if you have a hammer, your problems all look like nails. But that that really does ignore quality of life. Yeah, maybe maybe they do need to focus more on experience.

SPEAKER_04 32:11

If I had to set the priorities for medical personnel, I would probably set um things like presuming competence and letting even young patients have some authority over their experience above joy. But one of the things that a lot of autistic kids have access to are things like case workers and case managers and coordinators who are looking at not just the medical piece, but also things like social opportunities, um, employment, and things like that. And I would say that those folks need a dose of joy-focused practice. Because the kid is a teenager, the plan for their education is switching towards after high school and adult life and moving towards employment. But one of the things that we have been really thinking about is how to make and maintain friendships as an adult. What would developing hobbies look like considering options in terms of where to live? I mean, if you're neurotypical, you're like, you know, don't think Chicago's really my vibe. I think Munich might be cool. You get to figure those things out. And you can't quite do that when you have a diagnosed and documented disability, do not get me on that. I will talk all day about that.

SPEAKER_01 33:53

You're talking about how if you want to get a visa or something to another country that they don't allow people with disabilities to immigrate.

SPEAKER_04 34:02

It's changing, but um, it has been difficult for a while. But in terms of recognizing when a place fits your vibe, recognizing what your vibe is, really learning it sounds so cliche, like you are more than your diagnosis. Um, but people really are more than just autism. There are autistic people who love cities, and then you have Temple Grandin, who loves the country and is a farmer. She works in agriculture, and being able to learn more about yourself than your diagnosis, that to me kind of goes under the joy heading because it's a lot harder to um have joy in your life if you're not quite sure what that looks like for you personally. But developing that self-awareness and that self-determination and what an individual would find fulfilling as they enter adulthood is something that is unfortunately sorely neglected by a lot of professionals who work with young autistic people. That's where I've kind of had to slot myself in.

SPEAKER_03 35:26

What are you finding are the criteria for you and like what are what does need as he's entering adulthood? Um, what as a place to live and work and be an adult?

SPEAKER_04 35:38

We're still working in terms of what a career might look like in terms of employment. There are some fantastic options for like co-living situations where the kid would have roommates who are selected through a process that looks a little bit like choosing your college dorm roommate, but with a lot more medical details. There are questions about, you know, do you have pets? Do you like to play instruments? Um, are you a morning person or a night person? And also, do you have seizures? Also, a lot of development of awareness. This is something that definitely needs to start in early childhood, but really comes into play in adulthood self-awareness in terms of emotions, what safety feels like, what discomfort feels like, the difference between something that doesn't feel safe and something that may just not be your vibe. That is something that all kids, I would say, definitely need to learn. For autistic kids that may be somewhat slower in coming, it may require a different approach to identify those feelings. But I would say that for a lot of autistic kids, they face situations where they are actively discouraged from being able to develop that awareness because they're so much targeted towards making autistic kids easier for parents and professionals to deal with rather than a kid recognizing that having their hair combed today is not their vibe. Maybe they can do something else that it may be an issue where they recognize where those feelings are coming from and why.

SPEAKER_01 37:46

I know that in the, as you said, bad old days, a lot of uh autistic therapy focused on teaching kids how to mask, teaching them how to behave quote unquote normal, how to not do stim and this type of things. It's not as bad as in those days, but maybe they haven't completely gotten away from that mentality.

SPEAKER_04 38:07

I would I would say that it goes even deeper in terms of this goes to how we treat children in society in general. Neurotypical kids are urged to hug the uncle that they don't want to particularly hug right then and there. They're encouraged to finish their plate, even if they are actually full. Sometimes it is necessary to kind of circumvent what a kid may be apprehensive about. But a lot of what we tell a kid that they have to put up with may not be necessary at all. You don't have to hug that uncle. Food waste is bad, but maybe instead of dumping a bunch of food on a kid's plate and telling them they have to finish it, maybe getting really small portions and having them ask for seconds and recognize what full feels like for them. So I guess we're really circling back to you know, a better world for autistic kids is a better world for everybody.

SPEAKER_03 39:11

Mm-hmm. Mm-hmm. Yeah. That's the point we'll drive home here.

SPEAKER_01 39:15

Another another question we had uh in the notes was about this quote unquote levels of autism, like level one, level two, level three, and how that's not necessarily a good way to think about it. Uh, can you talk about that a little more?

SPEAKER_04 39:31

Uh yes, yes. Now, thankfully, I don't think this is in wide use anymore. But there are people whose autism presents in ways that look very different from neurotypical people, and then there's a reason why it's called the autism spectrum. Autism presents in so many different ways, and it also functioning the same way that neurotypical people function in one area of life doesn't necessarily carry over to universal function. There are people who hold full-time jobs, are professionals, and and have great social lives who may need help with toileting and hygiene. There are people who are nonverbal but are highly numerate. The kid is nonverbal, but they are literate and numerate. Although not as numerate as they would be if they did their homework.

SPEAKER_01 40:45

Well, none of us are though. We would all be more numerate if we'd done our homework.

SPEAKER_04 40:52

Yeah, no. Thinking of autism in levels kind of flattens that experience into a more autistic, less autistic. And that's not really terribly helpful to think about. When I'm talking with people who may need to take care of, I talk about it in terms of particular support needs that has and capabilities that the has and ways that the kid interacts with their environment that are selected for what may seem most appropriate for that particular setting. I would tell the kids teachers things that I may not tell um someone who is caring for them in our home because as uh the kid is an only child, you you don't have to talk about when they're with other kids, this may happen. And there are things about that are not very close to how their neurotypical peers operate. I am also in possession of a snarky little teenager who has managed to express snark beautifully, despite not saying a single word.

SPEAKER_01 42:25

That's a skill though. Talk about uh a win.

SPEAKER_04 42:30

Yeah, I uh I joked once uh on social media, it's like the kid's side-eye development is right on target.

SPEAKER_03 42:39

Going back to like villagers and accessibility and all of that, there are specific things that you talked about that would be great in in terms of your your mental health and your uh well-being and support needs through the parenting process. What would a village look like for you that fully understood the needs that you had as a parent uh with an autistic kid? What would that support look like? Aunties, uncles, friends knowing certain things automatically and jumping in for certain other things without you having to say help us see into your mind.

SPEAKER_04 43:19

I would say one of the things that I have sort of longed for, just as someone who has friends who I've not gotten to see for quite some time, recognizing that connecting as friends may look different and offering a variety of ways um to do that. It doesn't necessarily have to be the in person lunch at a cafe, it may need to be a midnight snack on FaceTime and in terms of being Nearby on a geographical level, things like offering to pick up the prescriptions. I've joked that with with all the prescriptions I pick up for the kid, that I should get a candy bar every now and then. Like I see you're dealing with a lot.

unknown 44:20

Here's a topic.

SPEAKER_01 44:22

Man, and in the US, I had totally forgotten about this because I've been living in Germany for so long. But in the US, picking up prescriptions takes forever. Forever. I mean, in the Germany, it takes like one minute. You give them the prescription, they go back and get it and they bring it to you and they say, see ya. Yeah, I can only imagine how much time that takes if you have a bunch of different medications and dealing with insurance and all that stuff. It's it's a lot of work, right?

SPEAKER_04 44:50

Um, also like learning the safe or special foods and making sure that the parent is able to keep them in stock. Food can be a somewhat sticky issue for autistic people. So you have folks who are very highly restrictive in terms of texture, in terms of sometimes color, um, sometimes temperature, um, nothing too hot or too cold. You know, sometimes folks have specific foods that they know that if nothing's really working for them that day, they can go to that food and everything's gonna be okay. What one common lament is when the safe food um changes formulation or goes out of stock. If the village could say, Hey, that that's safe food, I I was out two towns away and I found some. Would you like me to pick it up? That would be a godsend.

SPEAKER_01 45:54

Yeah, I would have never thought of that.

SPEAKER_04 45:58

In general, recognize that the way that you speak about autism or just in general, disability with uh those parents, especially near the kids, is going to shape that experience. I occasionally get folks who suggest that the kid is lucky to have um a parent like me. And one, I screw up all the time. Isn't that just the norm to have a parent who supports you um and thinks you're the coolest and wants to see you succeed in every way? Normal or it absolutely should be.

SPEAKER_01 46:48

Yeah, maybe that's a survival mentality, like what you were talking about with the social workers and everything focusing on job skills and things like that. Oh, we just have to survive, you know, and anything better than that is wow, amazing. When really survival shouldn't be the goal. I mean, it should be the baseline. So we have four minutes left in the recording. Yeah, I just want to say, Nakia, thank you so much. I can't tell you how much I learned just from this this discussion. I really appreciate you coming on here. Very helpful for us as people who want to be allies. Yeah, I don't know, Sarah, what what are you what are your thoughts?

SPEAKER_03 47:32

Yeah, I learned so much too, and especially the last bit about on a practical level. If I have a mom in my circle of friends who ha has a child that might have particular food needs, um medications and things like that. I thought that was a very like tangible advice for me to now latch onto and you know ask a question about if I encounter someone in my um physical geographical space. Yeah, thank you for helping me. Yeah, I really appreciate this conversation. Thank you for joining us.

SPEAKER_04 48:00

Thank you for inviting me. I'm I'm just glad to have been of help.

SPEAKER_01 48:04

Nikia, if there's one thing you want people to remember after after hearing this podcast, what what would you hope that uh the listeners can take away from it?

SPEAKER_04 48:14

A better world for autistic people is just a better world.

SPEAKER_02 48:20

Yeah. I love it. I love it. Put it on a poster.

SPEAKER_01 48:26

Yeah, that's right. That's right. Thank you again so much for joining us. Looking forward to coming back next month with Sarah. I I don't have a book planned, but it'll be a surprise.

SPEAKER_00 48:40

There, there, moms, mums, mums, mums. Oh, the will.