Autistic and Ausome!! A Kandid Chat about Autism Spectrum Disorder

Autistic & Ausome!

Kandidly Kristin: Hola podcast nation at your girl, Kandidly, Kristin. And this is the Kandid shop. You're a number one destination for Kandid conversations. Tonight's episode is sponsored by awesome swag apparel. That's awesome. Spelled A U S O M.E.. If you want to grab some dope merchandise with a message head over to www dot awesome. A U S O M E swag.com. And until the end of April, you'll get $10 off any order over 25 bucks.So go grab you some merchandise from awesome swag. Today is autism awareness month. And tonight we'll be talking about autism spectrum disorder or ASD. This is a very personal topic to me and my family. So I am excited to have this Kandid conversation. Joining me for this important discussion are Neurodiversity trainer certified purpose coach certified autism specialist and founder of Akili's corner Akili Atkinson. Akili says that purpose and passion drive her work. My second guest is Mrs. Chanel McGriff-Sok. Chanel is a stay at home mom, personal caregiver to her mom, my sister, and the founder of this episodes sponsor.

Ausome Swag. Ausome swag is a brand created to honor and celebrate the awesomeness of her son and my grand nephew. Jayden, who was diagnosed with ASD at age two. Swag is an acronym for sincere wise, accepting and giving. So welcome. Welcome. Welcome ladies to the Kandid Shop. No.

Chanel McGriff-Sok: Hello? Hello.

Akili Atkinson: Hello. Hello.

Thanks for

Kandidly Kristin: having me. Oh, I'm so glad that you both made it and you're here and we're having this conversation while it's still April because it's autism awareness month. So. I'm going to start with some stats. Now, when I went to autism speaks.org, the stat, there were so many stats. I mean, they got stats on stats on stat, so I'm not going to read all of them.

I'm just going to, hit on some of the, uh, the bigger ones. So in terms of prevalence, according to the CDC in 2021, approximately one in 44 children in the us is diagnosed with an autism spectrum disorder. And that's based on 2018 data. One in 27, boys identified with autism and one in 116, girls identified with autism.

Boys are four times more likely to be diagnosed than girls and many children were still being diagnosed after four though, autism can be reliably diagnosed as early as age 2. Autism affects all ethnic and socioeconomic groups though. Minority groups tend to be diagnosed later and less often. There is no medical detection for autism.

So ladies I think I'd like to start, by just asking you each to briefly share your stories as it relates to autism or ASD or neurodiversity and Akili, you go first.

Akili Atkinson: Thank you so much. My story, you said brief. It started 31 years ago with my son. He was diagnosed on the as Asperger's syndrome back then and now defined his ASD.

Uh, we were on the military base and nobody knew. What this meant. And this is before Google, before you had this community to help you. I had to start on this trek to figure out what to do, what this means and how this looks for our future. So I'm in a short version. It started because I had a, I had a need to learn and I needed to figure it out.

And it led to me figuring out this is way bigger than my son. Is this about so many other people and figuring out how to help them?

Kandidly Kristin: Yup, yup. And Chanel, I kind of know your story, but share it with my listeners.

Chanel McGriff-Sok: Yes. my journey started back in 2016. When my son, it was about four days before his second birthday.

From the time he was born, we always knew that he was a little bit delayed. we didn't exactly. What at first it was just global developmental delay, but then as he got older, he started to show more signs and, his pediatrician just wanted to have him evaluated by a developmental pediatrician.

So we went in and I kind of in the back of my mind, knew what they were going to say at the end of the appointment before they said it, because I do have a background in psychology. So I kind of knew some of the signs and symptoms, but it just, we, we didn't have a name at that point in time for what was actually going on with him.

So to go and see the developmental pediatrician and to actually get a diagnosis was like a huge weight off my shoulders because I had a name to go with everything that had been going on with him. All right from the time, you know, basically from the time he was born and, you know, he's eight years old now, he he's thriving and it's because it was detected so early that he is doing as great as he is.

He actually last week just graduated from outpatient speech therapy and the same, this, the same therapist that has been working with him since he was 20 months

Kandidly Kristin: old. That's awesome. That's awesome. Isn't that amazing? Yay. I wish I had my clap, see I missed that from Podbean. so. Akili,, your son was diagnosed with Asperger's and I know the little bit that I know.

I know most of what I know now because of Chanel and Jayden, because it was, you know, she's my niece, she's my sister's daughter. And so Jayden is naturally, they were my immediate family. So we needed to learn some things as well. Cause we spend a lot of time around each other. so this, the shift from two to the autism spectrum disorder, how did that happen?

And what does that mean? Because there are, from what I see, there are so many, iterations of autism. Like no two look alike.

Akili Atkinson: Yeah. So switching over to autism spectrum disorder is in my opinion, in a kind of frustration, it would be like if someone was in a wheelchair and then you just said everybody had the same disability because they were in a wheelchair, right.

It, it doesn't allow autism to move and breathe among people. If you see my son, he's a high, he's a college graduate. He's doing his thing. Life looks good. Um, but it has nothing to do with the social aspect or the anxiety phases, those things that are seen, but because the initial diagnosis now is autism, people would say, oh, he's fine.

But back then it was understood that Asperger's, although presents as , intellectually aware, there's a whole realm of social that is non-existence or limited. And so we don't have those clear definitions anymore, or those delineations between different diagnoses. And I think that makes it confusing for the regular folks.

The, you know, the people that just don't know anything about it. It's, it's big. And it's confusing you saying one out of 44. Can you imagine though, every one of those has a different diagnosis. Yeah. Technically because the autism is itself is their diagnosis, but there's so many layers to that and comorbidities it's yes.

I could go on forever on that.

Kandidly Kristin: Right. Right. So tell me, do we know what causes autism? Is it a, combination of environmental genetic? is there a specific marker for it?

Akili Atkinson: So we have no known diagnosis that you can listen to stories from people. I lost my, I was 22 years old when I had my son and I was without my amniotic fluid for over 48 hours.

I was to deliver a stillborn child. That was what the doctor told me. There was no viable heartbeat. And when he came out, he had a considerable lack of oxygen to his brain. And I got to see him, you know, two days later in ICU. Could that have been it? What would have been different? I don't know. I don't know.

So I don't, I don't question it. I know that God gave me a talent to mold and create. So that's just what I did is,

Kandidly Kristin: right, right. Right now, Chanel was, was your story similar in terms of your, your labor delivery? Uh, pregnancy?

Chanel McGriff-Sok: my pregnancy was pretty much normal. I had no, like, you know, under, like there was no preeclampsia and no gestational diabetes, nothing.

I basically just spontaneously went into labor at 33 weeks. They don't, they like doctor, they still don't know why that happened. so he w Jayden was born at 33 weeks. And he was in the NICU for two weeks. I just, you know, or just me thinking, I'm like, I always think that him being born premature had something to do with it.

Now, over the years, Jayden has seen many need different doctors for many different reasons to which are neurology and neuro genetics.

Kandidly Kristin: Right.

Chanel McGriff-Sok: he had, he did have genetic testing done, some years ago. And they do have like different syndromes and disorders that are linked to autism.

Fragile X syndrome is one of them. And I forgot what the other one was, but they, there, they do think that they have like some genetic markers that are associated with autism, but not something that's concrete.

Kandidly Kristin: Got it. Now, let me ask you this Chanel, because you have two children. Jada is as far as we know.

Not, on the autism spectrum, right?

Chanel McGriff-Sok: possibly she actually just had an early intervention evaluation about two weeks ago. And they did say that she does have some delays and also that she is showing some signs of autism. So it, but it presented completely different in the beginning. Like you would like she was meeting all for milestones as she was developing normally.

So her doctors were never concerned. My, I was always concerned because I already had a child who's on the spectrum. So I, I, as a parent was always concerned, her doctors weren't because in the beginning she wasn't showing any signs and now she's starting to have this. It's a little thing that most parents would probably look past.

Right. But as a parent with a child, who's already on the spectrum, you sit there and you criticize everything, right? Like she's starting to, she has moments where she'll just run back and forth for like 10 minutes at a time. It's usually at the same at the same time every night, but it's just running back and forth for like 10 minutes or she's having trouble potty training.

She's starting to go back to baby babbling. And it's like little things that you may like that a normal PA or a typical parent may not think is anything big. Where will I'm looking at it while

Kandidly Kristin: your hyper

aware. Yeah, yeah, yeah. Yep. Okay. So Akili the term neurodivergence can you just for myself, my own edification and for the people that will hear this, when it goes out, what exactly does that mean?

Akili Atkinson: So Neurodivergence and neuro-diversity are the two new buzzwords that are going around. And what it's designed to do actually is just use new terminology to bring everybody together in inclusivity. It's talks about the difference of your brain versus the difference of your disability. So if you're neurodivergent, your brain thinks differently than somebody else.

So all that means is find out what we can do to support your brain. Versus you have autism. So that means, I know you need to go sit in a corner, a quiet corner and stem or rock back and forth. That's what does your brain need for this situation? That's, that's being diverse and it's taking into account your brain rather than a book to tell you how you feel or what you need.

Kandidly Kristin: Right. And that's different for everybody, right? Like everyone with autism is, is just very, very different. Like my grandson, I believe is on the spectrum, but they're reluctant to diagnose him because he's social. But he's socially inappropriate. You know what I mean? He doesn't have any concept of personal space or any of that.

So because of that, but there are other, like, really clear markers to me that he's on the spectrum,

Akili Atkinson: Can I say that we have to be careful on how we use terminology because it presents so differently. My son is extremely social in sports. He was in sports from the time he was four years old. We put it in there because he had issues with hand-eye coordination.

So we started with karate. We moved on to basketball, soccer, all the regular swimming. He took tennis for years. and then he ended up being a cheerleader, a collegiate cheerleader. So we're talking about in the middle of the stands, getting the crowd going and then competing on that level, you know, in, in.

Right. Incredibly social, soon as he walks off the floor, he's not talking to anybody.

Kandidly Kristin: Gotcha.

Akili Atkinson: It's an, it's a different kind of, how does it look? How does social look for you and what does that mean? So it can't actually define your disability because your social presents the same as it does the next person, because you're probably in another area having some difficulties.

Kandidly Kristin: Right. So Asberger's always, fascinated me, when it was separate, because Asperger's seemed to be an, and this is for purely, for lack of better terms, like the very low level of autism where, someone would Aspbergers could, could function and air quotes normally, but just had. Some, I don't even know what the term is.

I don't know how to define these things. And I think that's part of the problem.

Akili Atkinson: I was, I was just saying that normally when they said Asperger's, they, they would talk about your abilities, your intellect. And so it would get, it would get, he, he never knew what to say because the person is probably the smartest person in the classroom and understands like, my son was incredibly smart in math and science and all, you know, but he couldn't interact with his peers.

That was his interaction with his teachers. Yes. He presents as incredibly intelligent, but, and it, part of intelligence is knowing how to have a conversation about what movie came out.

Kandidly Kristin: Right.

Akili Atkinson: That's fine. That's, that's part of the intelligence spectrum. And so as much as you can do, I think Asperger's is very difficult because you, they, they do a lot of masking to try and blend in because they really have no group subset to fit into because they're, they might not present in one and not in another one or it's, I think all of it's challenging, but I think that having not being able to wear your sign that says, Hey, this is what's going on with me.

You know, I had to put, put my son in the car at 16 years old and teach him how to drive. And my biggest fear was, you know, him not understanding how to interact properly. If he got pulled over. Yeah. And not for lack of trying, but then actually over trying and overcompensating, which then could bring on a whole new element.

Right. And if I pulled up his school record, there would probably not be a judge in the world that would believe that he presented and did what he did.

Kandidly Kristin: Right. All right. Wow. It's, it's so much to unpack I guess, where I want to go next is if someone is listening to this and they're looking at their kid and they're thinking maybe there is a slight chance.

And then let me first ask this question. So when we talk about spectrum, so are there grades or levels or how does it work? Like the spectrum that they determined that autism is now this autism spectrum disorder. Like, is there a, you're this level on the spectrum or that level on a spectrum? You know what I mean?

I don't know if I'm asking it quite right, but yeah. I mean,

Chanel McGriff-Sok: it changes like they've changed it actually, like within the last few years I've seen them change changing. There's I've had like, you know, low, moderate, severe level, one level, two level three, high functioning, low functioning. I've heard it all.

So basically. I guess you can look at ASD as like a color spectrum where you can like, you know, different color, like you can fall anywhere along that line of spectrum. Like you can have someone who's completely social and we'll talk, we'll chat your head off, but can't do basic self care functions or someone who is extremely, extremely intelligent and can recite every Shakespeare play ever written.

But can't hold a conversation with someone for more than like a few seconds. So it's like you can fall anywhere and have any combination of basically, I guess, disability within the spectrum. If there's there's no one, I don't think there's, there's no one like concrete definition for. It's like where people can fall in the spectrum.

Why, which is why they say no to you. If you know, two autistic people, you just know to people with autism, right?

Kandidly Kristin: Yeah. Like that. Yep.

Akili Atkinson: you, you hit the nail on the head. Chanel, that was perfect.

Kandidly Kristin: So let's talk a little bit about symptoms and what a parent or a teacher, but mostly parents. Cause that's, that's who, spends most of the time with the child.

Like when they're in, from birth to save two in that timeframe, what can a parent look for without making them hypervigilant? Like, oh my God, he's he's autistic. You know what I mean? what are some of, and I know that there's probably a list as long as my arm of possible symptoms and things signs that you may want to take your child to be tested or, or evaluated.

And either one of you can go first.

Chanel McGriff-Sok: I had a bunch of them written down and I can not find where I put them.

Akili Atkinson: Can I ask a question? Cause I, I believe Chanel and I probably have a difference of opinion on this one. So it'll be interesting to, to hear her take, I am, I'm not a proponent of going in for an immediate diagnosis because I think it can lend to the crafting of more than the disability is,

but I say that with a caveat, if you don't do early testing, you are missing opportunities to get extra help. So I say it knowing that the insistence is needed, but I think that sometimes we walk a fine line of trying to define. Child behavior and that allowing it to grow. But there are some markers. My son didn't talk until he was five.

Those are some, there are some very, very telling markers. He never crawled. He wasn't able to do the motion of crawling. It wasn't that he couldn't crawl. It was, he wasn't able to do that motion. And that's the difference. If you have a child that is crawling late. Oh, well, so what they're crawling late. If they don't know how to make.

Arms and their legs move succinctly, then there you have the issue. So I think that, that, that I, I believe is the difference between, going in and saying, yes, my child. Um, I think that there is something that should be addressed and trying to hold back, I to Chanel it. So interesting. I have two children also named Jared and Jasmine.

So something with a J something with the Jays. When my, when my daughter was born, I kind of did the same thing that you did. I was just holding my breath and looking at like why she looked that way. And then I noticed that some of the things she was doing was mimicking her brother. Just as a little sister.

And when I pulled back, um, years later, of course, she's 29 now and she doesn't have autism. She didn't ever have it, but there were times I could have steered that direction. So I think it takes a strong parent. Well, it takes a strong parent could go through this anyway, but it takes a strong parent to find that when to pull back.

So I I'm, I'm interested to see what Chanel thinks about that.

Chanel McGriff-Sok: And I think I held back. I think I held that for

a

long time.

Kandidly Kristin: You did, you did

Chanel McGriff-Sok: for

my daughter. I held back for a long time and then going into her pediatrician, they're like, well maybe it's worth. You know, just having her evaluated. I don't think it's necessarily like, you don't necessarily have to go in for an autism evaluation, but if you notice that your child

like a thing. One of the big things that people usually miss is when your child regresses, like they met a milestone and they were doing this for a certain period of time. And then they start to regress, like they were, they had worth and they were talking and then they stop. Or they like slowly their speech declines until it's basically non-existent or they were fully potty trained.

And then they cannot, you know, they can't use the toilet anymore, like, but it doesn't necessarily have to be autism. But if you notice like little things like this, it's always a good thing to get an evaluation, even if it's just, like a developmental evaluation is another good thing to do, just to make sure that your child is, you know, developing.

As they should not nor not. I usually don't like, so like developing as they should, if they're, or if they're not, but like what route should we go? And things like that. as far as, I guess, symptoms for autism, again, every child is going to look different. There are like the telltale signs, like, you know, one, the big one is the slapping or things like that, but it's different stems.

And honestly, most people stem in some type of way, tapping your pen on a desk tapping your foot of rocking back and forth. But yes, but it's where, where autism comes in is the repetition of it. Are you doing it for 20, 30, 40 minutes at a time? Non-stop One of Jayden's big ones was lining up cars.

He would literally just put all of his hot wheels, cars, and align, lay on the floor and just look at them. look at how your child is playing with toys. Are they playing with the toys appropriately? Are they, or are they just fixated on one aspect of the toy fixated on the wheel spinning, fixated on like, you know, like his biggest thing was anything that spun.

Wheels, fans, anything that's spun he got fixated on them. I think like, pretend to play in parallel play is another one

Kandidly Kristin: Ok wait, hold up, hold up. You can't be throwing stuff like that out and not define it.

Chanel McGriff-Sok: Yeah.

Well, pretend play is usually like children. They have, you know, they can like having imaginary friends or pretending that they're a princess and you know, their Teddy bear is the prince and they have to come save him from the dragon.

And like parallel play is playing basically the kind of the back and forth play between children.

Kandidly Kristin: Okay.

Chanel McGriff-Sok: , Jayden with his cause he has a lot of cousins. A lot of the times would instead of playing with the children, he would play next to them. Like he would be interested in what they were doing, but wouldn't fall into playing with them.

Kandidly Kristin: He would

play parallel to them.

Chanel McGriff-Sok: Yes and once he got to school, it was, he couldn't figure out how to integrate himself in school settings. So it was, he would always be interested in what they were doing, but couldn't figure out how to integrate himself in or how to ask to join in.

And then the kids, like they didn't really. I think anything, they just thought that that was his way of this. So they didn't really understand. And then that was like back in kindergarten was like five, you know? So it was, it wasn't such a huge thing because he was interacting, but not necessarily how people would think that he would interact with other kids.

Kandidly Kristin: Got it. So to each of you, this question is there at, uh, age is too, too young to actually make a diagnosis. What age? if you, if there are some, maybe some indicators is a good age or, and I know there's no right or wrong answer. cause everything is case specific and specific to the child, but is there a point where, you know, you're missing out, if you don't get them.

Evaluated by this age or an Akili. I know you kind of are, are more toward let's wait a little bit and just see the wait and see.

Akili Atkinson: well, I will say that, but I, we got our first conversation at six months old to say, I need, I need you to understand there are some differences and, but we don't know what this is yet.

And there was, uh, following along and until, until there was more concrete evidence. And I think that was even before two years old. but the steps after that was the most important steps. And this is where as a, as a parent and as a, very stubborn person, I wasn't aware how much the diagnosis could help.

The little things my son was reading. By the time he, I mean, he went from a non-speaker at five to, you know, reading high school books by the time he was in the third grade, but his comprehension was low.

Kandidly Kristin: Right.

Akili Atkinson: So I was blessed to find a teacher that said, yeah, I got to take him all the way back to see spot run.

And I was like, Ooh, not really. Cause he's like a genius. I mean, I know who you think he is, but this time he's speaking two languages. And why would you tell me that we need to go back to the beginning? And she said, I am seeing that his comprehension level doesn't fall along with the same, uh, the same way with the other children.

Now, if it was science or any type of yes it did. But any other subjects, his basic reading, no, his comprehension was off those outside professional. Are the ones that can see your child the way you just cannot. And that's my takeaway. As much as I say, wait, my takeaway is you can only wait if you can listen to others, because if I haven't been guided by others, this would not have gone the same way at all.

and so cause there was a lot of different avenues. So I think that as soon as somebody else, besides yourself raises the red flag, just be aware of it. If you don't do anything about it. Okay. But be aware that somebody said I'm seeing something and there may be something here. And then from that point, what you do with it, that to you, but as soon as someone says that,

yes,

yes.

Kandidly Kristin: Talk the segway and the diagnosis is perfect here because. Who diagnosis, how do you get a kid diagnosed? Because now my niece and I live in two different states close together, but in different states, she's in Pennsylvania, in Philadelphia, I'm in New Jersey, the services where she is are far and away, superior to what's offered over here, trying to get a diagnosis for my grandson has been painful to say the least.

And he still doesn't have it. And just trying to get assistance in. Okay. Who gives the diagnosis? Is it his pediatrician? Is it a neurologist? Is it a developmental specialist? So if you guys could both just give some advice to people out there who are at the point where they're ready to, have their child evaluated and where do they go?

Chanel McGriff-Sok: for me, it started with Jayden's pediatrician at about 15 months he started asking you, well, is he speaking? Like, is he starting to try to form words? And I said, no, there is a, an assessment that the pediatrician give you called the M chat that he failed his, I forgot. I forgot how, what the score was.

I would have to go back and looking at medical records, but he failed his and he's like, okay, it's time to start going back. Cause J Jayden was actually receiving early intervention services since he was three months old, but they were more for like OT services because they thought that he had torticollis when he was, um, uh, when he was born.

But it was just, he favored one side or the other. Okay. So after he had, basically finished with his early intervention OT, they had like, you know, a service coordinator that would check in every few months at 15 months, his pediatrician was like call childlink and ask them for him to be reevaluated. He had a special instruction.

He got special instruction at 18 months. That really didn't go anywhere. He still wasn't speaking. He still was, you know, he was doing all of the behaviors that like the flapping was spinning the, you know, running back and forth. So at about 20 months, he started with speech therapy, his speech therapist in the beginning, thought that he would not speak.

He just, if they were like, he just may never speak. And I think at his two year, well, right before he turned two, he had gotten into the developmental psychology with a meeting, with a developmental pediatrician who was supposed to have started seeing him right after he left the NICU. But somehow he got, he got missed in the system.

So that's how, that's how I got my appointment so fast. But for most places, especially now the wait list could be up to two years yes. Yes. And that's just for any type of developmental evaluation. Wow. That, like, I know what children's hospital, it's two years with Nemours. It's two years now. Um, another thing, depending on state, you all through your children's health insurance, there's usually a behavioral and mental health organization that, that covers that ours over in Pennsylvania is well in Philadelphia is community behavioral health.

I can call them and find out, well, Hey, where can I get an evaluation done? Okay. They can help schedule the appointments for the evaluation. They talk to the facilities that do the evaluations, which is how I got an evaluation for early intervention for Jayda.

Kandidly Kristin: Got it.

Chanel McGriff-Sok: Um, but it also. depend on your state or your city that you're in.

The first thing I usually would say to someone is talk to your child's pediatrician. They usually know more information than you think they know, but a lot of the times they're just waiting for you to ask because sometimes parents can get a little defensive if someone is coming at them. Well, I think this is going on with your child,

no, my child is fine. There's nothing going on. So their pediatricians are usually waiting for you to ask they have the resources there, or, um, sometimes your B if you're getting insurance through welfare, the county assistance office could have, um, some information as well. Okay. So I, for Jayden, I went through Nemours developmental department.

From the time I got the appointments to diagnosis, but in most cases, it's like a two year wait

Kandidly Kristin: for diagnosis.

Chanel McGriff-Sok: You go for the, just for the evaluation appointment.

Kandidly Kristin: Oh

wow. So that's two years. The child is missing maybe critical services that needs to change. And Akili,

Akili Atkinson: I, I was, I was blessed to be on a military base.

We had some of the best medical care and then resource outsourced to other places. But I live here in Texas now, and two years would be a dream if someone had an appointment within two years and started services, uh, and it could happen, but the, onus is not on. Figuring out people's disabilities here in assisting them that we're just behind.

We have a, we have a waiting list for, for services for intense services. That's I think it's over 25 years. Oh. And the waiting list. So, so technically if you don't get your child on before they're born, they're not going to get any, any dollars. Um, and that's how bad it is in Texas right now. Wow. I'm not calling out to Texas because Texas knows that this is what they, you know, this is what they do.

But I, we were, I raise my son and my daughter in Oklahoma and we did not have these issues. They considered what was necessary for a child in the very beginning stages of life. But I don't see the same thing here at all. And a lot of parents go into their own pockets. their insurance doesn't cover everything you need, because if you get one diagnosis that might lead to another one, it just, you might need PT, OT.

There's so many things that you, that you could need that you just, if you don't get them, it can delay another area. And so we're fighting a losing battle here in Texas, because even if they have one service, they're missing another service.

Kandidly Kristin: Right? So speaking of services, interventions, and support, I was reading about something called ABA or applied behavior analysis.

can both of you, if you have any, knowledge about it or experience with it. Talk to me about its effectiveness. And I know early intervention with anything from cancer to ASD is a good thing, but the applied behavior analysis and therapies, what are they? And are they effective?

Akili Atkinson: I think you will have people on both sides of the fence saying yes or no at the effectiveness.

I think that in the, in the very beginning, of course it's effective. I don't think that there should be any parent that isn't using or learning about some sort of ABA therapy. I don't see the fading of ABA therapy as they progress in school and what happens. And I work with adults. So what happens is if you haven't.

trained your brain to figure out how to do those procedures independently. Then you're still going to be relying on somebody to cue you with ABA therapies, styles, and that doesn't happen in the workplace or in the adult settings. So that transition from ABA therapy into, emerging adults. I think that's where the, the difficulty starts coming in.

Kandidly Kristin: So can you tell me just briefly what ABA therapies are? Are they a specific set of, of, of things that a child would do or, Like, what is it exactly?

Chanel McGriff-Sok: I kind of feel like it's along the lines of behavior modification. It's basically, from what I seen, it's kind of showing a child. How to handle certain situations or how to do things so that I feel like possibly so that they can fit in to a neuro-typical world because that's the world that they live in.

Like you can't sit there when you get frustrated. Just, I mean, yes, you can have a meltdown, but in the real world is how many people are actually going to understand what is going on and how are they going to respond to you?

Kandidly Kristin: Right.

Chanel McGriff-Sok: Jayden, and actually does have an ABA behavioral specialist that comes to see him at school.

And Mr. Raymond Jayden loves seeing him and, you know, cut him coming in and things like that. And working with Jayden and he basically tries to get Jayden to be able to vocalize his needs when he's in class, instead of just having a meltdown because of his frustration.

Kandidly Kristin: Got it.

Chanel McGriff-Sok: You know, and his OT therapist does a lot of working with that as well.

But Mr. Raymond has specific. Job is to help Jayden with coping strategies and how to calm himself when he's having a meltdown because of his frustration in class and things like that. So it does work now on the flip side of that, it, it kinda, it depends on the agency and the specific, therapist, because some ABA therapists, I believe strictly use behavior modification and it's like, okay, no, this is what we're, you're not going to do this.

This is what you're going to do. Instead of telling them why one behavior is preferred over the other. so it's like, you'll have parents that are like that swear completely against ABA therapy. And then you'll have parents that are like, no, this is, this was the only thing that works for my child.

Nothing else worked. We've tried millions of therapies and strategies. So it's kind of a double-edged sword

Kandidly Kristin: And could both be true

Chanel McGriff-Sok: yes.

Akili Atkinson: Oh, yes.

Kandidly Kristin: Yeah. Yeah.

Akili Atkinson: Oh yes. And I will say, I was gonna say Chanel welcome to Texas because there's a lot of, there's a lot of behavior modification here. And to me that's kind of insulting because it's not addressing the needs of their brain and that's, that's what I see a lot.

And that's really, really frustrating because there are certain things on, in their brain that are just not going to change. So to ask them to, to change them is a punishment. And to say that you're not accepting and to teach them how to start masking and masking can take all different forms especially with drugs or alcohol or in proper friendships when they get older.

So they have to learn how to transition their, somebody else, cuing them to say, how do you want to handle this situation to telling themselves, Hey, what do I need to do? Oh, I need to go drop the F bomb. Oh, that's right. I need to go to my car and do it. I just can't do it in here. But you could, if you, that mad go drop the F-bomb.

I don't care just know where you can, you can do it. You know, I tell my clients all the time I mad is an acceptable emotion. Use it. have it have fun with it. Just know where you get and have it. If you are mad and you're going to work, make sure you're either you're at a seven. You know, um, on the scale going up 10 is a perfect, a perfect day.

You're on a seven. And besides the, by the time you walk in the door, they'll walk in the door because your day is not going to be good, you know?

Kandidly Kristin: Yep. So, Akili, you mentioned that the ABA doesn't really transition well as children go from child to adolescent, to young adult, to adult, and you do work with adults, that have ASD.

So can you talk to me a little bit about the challenges, the differences and what your work entails in terms of now you're an adult you're 18 plus. So what does that work look like?

Akili Atkinson: Well from the numbers, one out of every 44 are being diagnosed with autism. 85% are unemployed or underemployed with, or without a college degree.

So that means they're not going to work all the hard work that our parents are doing throughout their whole life. The chances are they're not going to find a job. So the idea is to say, why, why, why is this happening? Because if they're getting the interventions that they need, and now that they're presenting and they're capable, they're still not being hired.

So there are things that they are not understanding about how the world works. Great. So we have done so much focus on getting them to mesh with society and blend and all of these good things. We forgot to talk to them about their own internal happiness. As it relates to the world around them. So the world doesn't work around you, you work around the world and you develop your happiness.

They get thrown into this adult world and they're like, wait a minute. Throughout my whole life, I had my parents doting over me. I had special, um, um, IDPs in school. I had therapist, I had everybody surrounding me helping me. Why am I alone now? I'm alone. And I don't feel like I have anybody to help me through this new world.

And I don't know that I heard about this new world the way I should have. So I deal with the young people that learn about sex through an anime game or, or show and have no idea because the parents said, no, they don't really think like that because they're really just not thinking like that. They watched anime because the, the characters on anime are very animated.

That's why these guys are partying. Your child is watching anime they starts with anime go look at the, met the cartoons. They are very deep, detailed in their presentation. And so it's so things like that, they're just not ready for the adult world. And then we start talking about their brain development.

We were hard pressed to find a, any 18 year old that is ready to get out in the world. But a lot of people in the spectrum are functioning in maturity-wise on a lower level. So they need a longer time before they should be. Pushed into a different society like college and the work world. There, you can, you can wait and strengthen some of their skills in the meantime, or work with someone like me who can get you to a career that can get you to a career path rather than your wiping tables at a restaurant for the next 10 or 15 years.

It's it's a, this is a big struggle.

Kandidly Kristin: Yeah.

And I, I actually, the site actually has specific statistics on autism and adulthood. And, um, I'm actually, while you were talking was reading it, it says that over the next decade an estimated 700,000 to 1 million teens will enter adulthood and age out of

school-based autism services, nearly half of 25 year olds with autism has never held a paying job. And of the nearly 18,000 adults with autism who use state funded vocational rehabilitation programs, only 60% left the program with a job. And of these only 80% work part-time at a median weekly rate of $160.

So that just really like confirms everything you just said, which is crazy. So they've got all these dope services from birth to 12th grade and then nothing.

And I'm private pay. I'm not state funded. So to me, it's private pay. And the reason why it's private pay is I, I do more so she, you can go to a state program and they're going to, they're going to find you a job, wiping tables.

You're gonna say, what do I like? And they're going to say a quiet environment. They'll find you a little corner somewhere to wipe a table. And they say, they're great. And I will tell you, well, the world isn't quiet. So how much noise can you take?

Right.

Akili Atkinson: So let's go from there. and that is the difference of services because here's the idea.

you will have to take care of your child for the rest of your life. You're natural life. And then once you pass, if you haven't invested well, then what's going to happen to your adult child. They're not working. They're not, they're not going to work. Then they're not getting a job. So without that this whole, this whole thing called life stops, as soon as they become an adult, as soon as it just, like you said, when they're, when they age out their life, in a sense, stops, they continue to have social functions when their parents drive them somewhere.

So then that's where they have their friends. It is not a fun existence for an adult on the spectrum that has some deficits, trying to figure out how to do this. It's scary to me. Yeah.

Kandidly Kristin: Yeah. I agree. I agree. So what can employers and the folks who have the jobs to give, do to do better by, adults with autism?

What can they do better? And the second part to that question and that's for both of you is what can. Legislation or, government programs do better by the adult children because it, and it state-by-state. And I wish there was some national program. So it wasn't regulated by states as to what services like Texas is crappy Jersey is crappy.

PA is, seems to be really good. You know what I mean? so where can we go in terms of real solutions? Because the kids seem to be kind of covered as long as they're in school, they're getting some services, maybe not ideal, but it's the, it's the 18 and up. What can, companies do businesses do and what can the government do better by.

our awesome folk,

Chanel McGriff-Sok: I

think for one the government and not just for individuals with autism, but for individuals with any type of mental health issue, the government needs to fund programs to train police officers on how to deal with these types of situations. I literally just had a talk with my husband the other day about when Jayden is of age to drive and how he may not understand.

What is going on in the situation when he gets pulled over. So I'm like, I want him to literally have a card in a little pouch that he can slip through the crack of his window that says I have autism spectrum disorder. I may not understand your questions. I may not answer your questions in the quote unquote appropriate manner.

Here is all of my information, my license, my registration number proof of insurance. And please allow me to contact my parent on a video call so that you may explain to them why I am being pulled over so that they can help me better understand because a person with autism may not completely understand what is going on in the situation, right?

The government has to find a way to better train police officers on how to deal with these types of situation.

Akili Atkinson: So Chanel my son started carrying his laminated card. I just made it on an index card when he was 14 years old. And when he started driving, I didn't have him put it in his wallet because I didn't have one and have to reach anywhere.

So he took a little piece of Velcro and put the little Velcro on one sticky side, the other side and put it on the dashboard. And that way he could just take it off the dashboard and hand it to them if necessary. So it was my only saving grace that I did. I held my breath almost every time for about three years while he left the house, when he started driving, um, it was just, it was devastating every time he got behind the wheel, it was, and I explained a lot of realistic, these.

I visualize. So I had them watch TV shows and show him what would happen if you did what would happen if you know, why did the police officer react that way? I had him look in the mirror, cause this was another thing I, we pulled up mugshots and I, and I said, who do you look like? And he would point.

And he's like, well, I kind of looked like this person, that person. I said, okay, where were you at the same time that this guy was committing a crime? He was like, well, I don't know. And I said, well, that's not okay. So for you, you have to know, because if you can say that you look like a couple of these guys, so an officer and the officer technically is not wrong.

They're just doing their job. And I think we are a long way away from our officers. understanding autism. I don't, I don't, I, I don't think that we're anywhere near. Even if we do come to an understanding about autism, some of us, my son is six one, and he used to walk around at about one 90 of solid muscle.

He is not going to escape the. ideas that he may be somebody different than he is. So we're a long, we're a long way away. We're a long way away. But as far as our employers, how can they do it better? I think we need to take a little bit of the pressure off of them because they're not doing much.

Right. And I mean that with all respect, because I have a ton of employers that do hire, they normally hire one, but a lot of them struggle with conversations or understanding that's because they haven't been, they're not trained. They have so much, we kind of forget that they, they have big jobs. And then, and they were wanting to hire somebody to help relieve some of that.

And so one of their thought processes, which, you know, they don't say is, well, why would I hire somebody? And it's still caused me more problems. Right. And you got to understand it from their perspective, that that makes sense. They don't want to take an eight hour day and turn their day into a 10 hour day.

And they're getting paid the same amount of money. So how can we, how can we. Parents as influencers as voices, how can we make other people responsible? Like our government, like our school system? What if you know that a young person is not going to go straight to college, they need to do some sort of vocational training when they're a junior, probably a sophomore, junior and senior year.

Why are they, why are we still adding and subtracting when you don't understand how to, to work in a, in a workplace, we've got to change what we're doing to help get people ready to enter that next stage.

Kandidly Kristin: Yes, I agree. I absolutely agree. So great segue. in an ideal world, if you had your way, what would that look like?

the programs to transition? What, what do you think should be in place?

Akili Atkinson: You got to put it in the college for the teachers coming out of school. First of all, because it, like, let's say you, you started, let's say we in the college system, one of your classes that was mandatory, you guys remember taking that intro to college class, welcome to college.

This is what you need to know. What have been your sophomore year? Because I don't think it should be in the beginning. I think it should be when you have more maturity, but would it be in your sophomore year of college, you had to take a class understanding differences and it was based on, uh, disabilities.

And so you had a whole semester to really dig into what that meant either. You are going to become an employer one day and now you have some knowledge, you have some actual knowledge of the difference, or you are the person that has a disability and, you know, you're included. So we have to put this back into the school system to have an educational conversation to all people.

we can't have it with just a group. Everybody has to have just like we're talking about CRT or we have black history month or we have, you know, we have, I had to have, uh, my kids had to have Oklahoma history to graduate from high school in Oklahoma why are we having, and you see what I'm saying, couldn't we have replaced that class was something that was

Kandidly Kristin: more useful

Akili Atkinson: and they would take that on with them and they would use that experience to talk to others.

So I think this really goes back to the school systems and which I know bless the hearts. They're so busy and have so much else to do, but our colleges most definitely should have classes that are designed to teach inclusivity and we don't.

Kandidly Kristin: Okay. All right. I wholeheartedly and 100% agree. Ah, God, that hour went so fast.

Oh my God, this is the part I hate when we're getting to I'm looking at the clock, like, Ugh, we're at an hour already. So as we are. Coming to the end of our time together, I would like to get last thoughts from each of you in turn, just speaking directly to the people that will hear this show, what would you say to them on this subject?

Whether it's a parent or an adult out there with autism, that's struggling to find their way. what would you say to them and Chanel if she thought she got disconnected? So let's see if you're still with us go first. Okay. Go.

Chanel McGriff-Sok: Find your support because dealing with all of this and all that autism comes with can be hard.

If you're on your own, it could be, your support could be a friend. It could be a colleague, it could be a family member find, your support. It could even be, your child's therapist. I've always had great relationships with all of Jayden's therapists. There was one particular OT therapist that he had. We loved her and then he went to school.

So, you know, but support is a big thing for, I mean, that could be for any, honestly, any parent, it doesn't have to be a parent with a child on the spectrum. It could be for any parent, but, support is heavily needed. I think. When you're dealing with a child with autism, I have a great support system. I have a great support system.

Um, you know, people that are understanding and that are really accepting. And you, and in the real world, you may not always find people that are accepting of your child because it's your child. Of course you love them, but everybody else doesn't have to. Right. So when you can find people that are not only accepting of your child, but also of you and of the things that you do for your child, that is a great, great thing.

Kandidly Kristin: Yup. I agree. Great advice, Chanel. Thank you. And Akili.

Akili Atkinson: my final thought is, is probably off what I, what I said earlier. So it's like, what, what did she talk about now? But I want parents, especially moms to go look up the definition of the word, selfish and start to apply that to their lives. Your life can not only be your child that is on the spectrum.

And we fall into that so much because we don't have an understanding of what else to do, but self care, oh my goodness. Self care. Along with finding your support. If you are not doing self-care, you are not being the best parent that you can for your child. And it is okay to hide in the closet and cry and lock that door.

I don't care if you have to do it once a week, lock that door and sit in that. And cry, laugh, eat the food that you want to eat, that they say that they had to have. And I don't care, take some selfish time for yourself and, and be okay with the pattern and the path that this is going to take. Don't try and define it.

Just be okay with the path that's going to take this. It's going to take some, this is a rollercoaster, but that roller coaster always slides in, in the end. You know, you go up and down and around, but then it slows down as lies in my life is good. My son is amazing. He's a joy to be around and I couldn't always say that, but now he, the rollercoaster we're just sliding in and I'm not a parent anymore.

I'm a confidant, I'm a friend. I'm his mom, but you know what I mean? I don't, I don't have to mother or raise him anymore. So my roller coaster ride is over. There is light at the end of this tunnel.

Kandidly Kristin: Yes. Oh, that's awesome. That was so good. Thank you so much. This has been a really, really our always think coming into a podcast that, you know, I have my ideas of what it's going to be, and then it's always so much more, I can't thank the both of you enough Chanel.

I know that you literally, probably still have packing boxes that need attention. And you took the time. To spend this hour with me talking about, this subject, not just for Jayden, you both are amazing advocates for your children. And that will be what I say to people is, for a child that is, has ASD or.

Any issue, we're their advocates. They can't speak for themselves. So we need to, and Akili, I appreciate you so much for remembering, cause we scheduled this so long ago and showing up and bring it all of your lived experience, your professional experience, Chanel, you know, I love you to death.

Your my niecy-poo so that goes without saying, as we wrap this up, there is a website and I'm going to find some more resources to post in the show notes when the episode goes up. But the first one is autism speaks.org. Their site is just a ridiculous wealth of information and resources, statistics, It's at least a starting point.

If you live in a state like Akili and I, whose resources are lacking, this could be a starting point for you to at least start to do some research, to maybe figure out your next steps in terms of your ausome child. show notes, we'll include Akilis information and Akilis corner, social media website.

It will also include the awesome swag website. And I want everybody that listens to this to go buy something. I mean it, or I'm banning you from the podcast. You know, I'm just playing. the episode is going to post on not this Friday, the last Friday in April. Cause I need time to edit and it will post with show notes and a transcription for those folk who are hearing impaired.

You'll be able to read what we talked about. It will be available at www.thekandidshop and that's Kandid with a k.com. And while you're over there listening to this awesome episode, like follow share, subscribe, follow us on Facebook and IG at @kandidshoppodcast or our YouTube channel at the Kandid shop.

Thank you ladies. Again, it has been my absolute pleasure to have this conversation with you. Thank you for joining me.

Chanel McGriff-Sok: You're very welcome.

Kandidly Kristin: Thank you. All right guys, like I say, at the end of every single episode, I want you all to keep it safe. Keep it healthy, keep it Kandid. And this time I want you to keep it Ausome!! Good night.

Connect w/ Akili Atkinson:

Akilis Corner

https://www.facebook.com/Akiliscorner

https://www.linkedin.com/in/akiliscorner/

Shop @ Ausome SWAG

https://www.ausomeswag.com

Resources:

https://www.autismspeaks.org/resource-guide

https://autismnow.org/

https://autismsociety.org/