Episode 359- How "AUTISM TODAY" Helps Families Find Real Resources with Karen Simmons

The worst part of an autism diagnosis is not the word itself. It is the silence that can follow when you do not know where to go, what to trust, or who will truly understand your day to day life. We talk with Karen Simmons about that exact moment and the long road after it, from early parenting chaos to building reliable autism resources that help families feel less alone.

We get into why “future tellers” can be so damaging, how a strengths based approach changes everything, and what it looks like to create autism education that is actually usable for parents, teachers, and siblings. Karen shares the story behind Autism Today, the need for a safe place to belong, and why real community is built through clear information, lived experience, and generous referrals. We also dig into the Autism Directory concept as a modern hub where parents, professionals, clinics, educators, podcasts, and even autistic creators can be found without the needle in a haystack search.

Along the way, we share personal milestones that hit differently, like Special Olympics pride and the kind of joy that comes when a teen proves the experts wrong. You will hear a powerful reminder that progress can show up through alternative communication, early literacy, and passion driven work, including a YouTube channel that becomes a first paycheck.

If you care about neurodiversity, autism support, inclusive communities, and practical tools for real life, listen now. Subscribe, share this with a parent or educator who needs it, and leave a review so more families can find the help they have been looking for.

Transcript

Welcome And Why Resources Matter

SPEAKER_01 0:01

Hi, welcome to the SJ Child Show. Today I have such an amazing guest to bring. You know, a long time ago, I had always been counting on Autism Today magazine to show up in on my computer in my email. Like I, you know, there's a time where there's just limited resources that we have sometimes, and the resources that we find that can help us are just beyond words and thank you and everything. So we're so honored and grateful to have Karen Simmons with us today, who is well, I'll let you tell all of the is because I don't want to leave anything out. But so nice to have you.

SPEAKER_02 0:46

Please introduce yourself and let us Sarah, thank you so much for having me. And I'm honored to be here. I really am. And it's been a long journey, and it is not over yet. So I started in actually, I started in 1998. Actually, I started in 1996. Well, we won't go back there way long time ago, and my son was diagnosed with autism, of course. And I was sitting in the Safeway parking lot wondering what on earth I could do. You know, I had no idea where to go, what to do. And I we've heard this story a bazillion times, right? Where, you know, what do I do? Oh no, you know, do I go out and buy myself a hyperbaric oxygen chamber and then mortgage my house? Or do I what do I do? Because you care about your kids tremendously. So that put me on the path of

A Diagnosis That Changed Everything

SPEAKER_02 1:40

writing my very first book called Little Rain Man, back in the day when it was socially appropriate to say that.

SPEAKER_01 1:46

Oh my gosh, I just said that today.

SPEAKER_02 1:49

So yeah, well, some people put, you know, kind of sure. Anyway, but I the reason I wrote that book, and it was written kind of through me, was to help the parents and teachers and his siblings, because he has five siblings living in the house at the same time, understand what was going on with Jonathan. You know, why was he spinning in the dishwasher? Why was he trying to climb down the laundry chute? Why did his brother, that's the other neurodiverse person in the house, decide that he wanted to take the match and put it in the garbage can? And we ended up taking out to the back porch and called the fire department. And, you know, I mean, there's lots of drama. So anyway, I ended up writing that book. It was a bestseller at the time, and then it led me to write write and co-write another 14 books. Wow. Yeah. So I got the a gold medal for the official autism 101 manual because I wanted people to have a place to start and a place to finish. And I brought in people like Temple Grande, Stephen Shore, Barry Prazant, you know, the people that could understand who do understand and continue to understand at that time, you know, to help out with navigating the spectrum, navigating autism at that time, without falling into a landmine or something, you know, without mortgaging your house or you know, it seems impossible some days. It does, it does, because it's such a challenge, you know. You have a whole lifetime to plan out with this child or person or adult or whatever, you know. And now both of my sons are living together, supporting each other. Oh well, yes, and I mean, we have our challenges too, you know, just like anybody. So that led me to well, back with the little Rainman, I started Autism Today. So I could have a one-stop place at that time that I thought would help people find what they needed. And that's always been

Turning Chaos Into Books Parents Use

SPEAKER_02 3:55

the dream. We were in the publishing industry. My late husband and I were in the publishing industry for 30 years, and so I always dreamed of a magazine, of a directory, of a way where people could go find what the help that they needed right then, you know, while the kids uh flooding the basement or whatever.

SPEAKER_01 4:16

And here we are today, and there are so many resources, yet you still find families that feel so isolated, so alone, such a uh it's it's such a journey that you just to find the one person who you can talk to or can listen and they can hear and understand what you're saying without oh, you know, making some kind of ah, that's crazy. Good luck with you today, you know, kind of an idea. Make you feel like you're in a safe place to belong. Uh, there's nothing more important than that. And I agree that finding that teeny bit of, you know, oh, this the sentence makes sense to me. It it relates to my family, to my world, to my environment. And it just for one moment, I don't feel like I'm doing this all by myself. Like there are others that are in this with me. And yeah, it so thank you. Thank you so much. And just such an a beautiful and honorable thing to help the world. And I I love it when I come together with someone that is so deeply resonating with me as a person, because I the same thing when my when my you know child was spinning and you know, yelling and not making eye contact, and people were thinking, What's happening? I wrote a children's book and said, This is how you understand him, this is how you look at him, how you like get to know him. Do you want to enter his world? This is how you do it. And it there's this kind of sense of relief. My husband and I made up this quote that just a little bit of knowledge turns fear into understanding. Because we would see that we would see like the the melting of the okay, I I can understand, you know, now that that maybe that's what he's going through. And yeah, those were tricky days. These days in the teenage years, I feel like have gotten so much easier, and it's probably a lot different for other parents, right?

SPEAKER_02 6:32

They're like, oh, teenagers, but we're all yeah, we're all on a learning curve, you know. There's exactly I'm still learning so much how to help support my two sons that are living together, and right now in their lives, I think it'd be better if they you know moved into their own place. It's that time, but they're 35. It's like okay, 35 and 32. So I just there's always things that come up, but the resiliency and the you know and the perspective. I think perspective is a really, really good thing to focus on

Creating Autism Today For Belonging

SPEAKER_02 7:10

because you can look at your life from where you are, because you're a youngster to me.

SPEAKER_01 7:16

We're like half we're in the halfway point, right? We're halfway at the halfway point. So I think that and to other parents, as you well know, that are at the very beginning with their three-year-old, that are and I love this tiered effect where we can be any at any part of this journey, and we can do one, you know, three things. We can reach down and help the person who's just at the very beginning when we're at this center stage, or we can be the person that's at where you're at, and you can, you know, I can reach to you and say, Oh, where will I be? What will I need? How can I? And it's just this beautiful tiered system that we should really take advantage of as much as possible if we can, you know, find the right tribe and and be with those people. So, but autism today can make that happen. Like you find, you find peace, you find people, you know. I love Stephen Markshore. I oh yeah, I had so many interviews and wonderful things together. Uh, you know, Temple was wonderful to have on the show. She really, she really showed me like her style, and and and I think that that is something that I've really had the opportunity over this, you know, last 360 episodes to understand every individual style of autism.

SPEAKER_00 8:47

Not every, don't get me wrong. There's yeah, that was a dolphin.

SPEAKER_02 8:52

Yeah, we went swimming with dolphins. We hung out in the on the big island for two weeks and drove all over the place. And I mean, he's an amazing person, he's so positive. We're both together, you know, we're just crazy, too. Like two little kids. I'm two little kids. I did one conference and we did this thing called Badgers, and we're jumping up on the stage. We got everybody to jump up at the same time, just like raising your arms like that, you know.

SPEAKER_01 9:19

It was he's just great. It's magical. No, it is the truth, and it's this authenticity that comes forth that there's no, it's no program, there's no, you know, he doesn't have an expectation of what the audience is going to think or what he's just there doing what is natural for him. And as we all, as we are, you know, we're just showing up as ourselves and and sharing these stories and the experiences. And through that, the experience that others can have and the that relatability and that, oh wow, I can just reach out to someone like Sarah, you know, and someone like Karen, and just they can show me that it's you're not alone. There are experiences we can have together. Yes, days are hard. Five in the morning is hard some days, you know, and when there's meltdowns happening and things, but the more we can talk about it, the more we can normalize our daily lives and not hide the fact that my kid sleeps on a moon schedule where it every hour of every day is different. Like that is something I've had to accept that society does not like. They do not like the different types of accommodations that sometimes we provide ourselves and our families, you

Strengths Over Fear And Predictions

SPEAKER_01 10:45

know.

SPEAKER_02 10:45

I know, but they'll get over it.

unknown 10:48

They'll have to.

SPEAKER_02 10:50

Eventually they will.

SPEAKER_01 10:52

Um do you think that ever it'll be the will it'll be a time where we can just be that way?

SPEAKER_02 11:00

Well, Steven and I have been watching the curve of diagnosis, you know, and how it's gone like from way up here, one in or three in 10,000 when I wrote my first book, all the way to what one in 30 or 16. I don't know. 21 right now, yeah. We were talking about well, what happens when it gets even? Or what happens when we take over? Kind of one and two, two and one, exactly. So I don't think it's anything to fear, I think more importantly, it's something to embrace and own and look at the strengths, gifts, and talents of what people have and bring to the table and focus on building those. And that's that's a passion that Temple and I both have too. And we've always talked about that. She indirectly talked taught my daughter, my daughter, my son Jonathan, to drive because he was afraid to drive. Yeah, because she came up and did a cut a few conferences and she said, Jonathan, you've got to go up and don't don't worry about anything, just go out on a big acre and spin circles and drive like crazy, you know. Like, don't be afraid of getting behind the wheel, yeah, is what she was saying. You've got to experience life, right? Yeah, it doesn't matter what other people say, it doesn't matter, you know, it may matter that you stay safe, of course, but just you know, to embrace what you're going to do. And so he drove for people for a long time, delivering medications and doing things like that.

SPEAKER_01 12:29

So yeah. And sometimes, you know, we do things and we see our kids do things that maybe somebody said they would never do. And I think that that's an idea that I like to call them future tellers. I don't like to listen to the future tell. No, I think that there's a place for explaining to someone what their overall support may look like, but I don't think that there's a place for discouraging a parent to what their child may be capable of years, years from what they're telling them they may be. I think that there's a very big, you know, kind of misunderstanding that they can't grow, that they can't develop, that they can't become capable of so much more. Um we're so lucky to have, you know, like Ron Sandison. I just interviewed him last week, and we were talking, you know, he was non-speaking until he was 10 and now and memorized all of the scriptures, and he goes and he does, you know, 6,000, I think he said,

Building The Autism Directory Hub

SPEAKER_01 13:40

uh speaking engagements.

SPEAKER_02 13:42

It's like well, we we've been working on the directory because I've always wanted to have an autism directory so that I could because I was in that business for a while, and I have a partner that's helping build this directory. It's called Autism Directory.

SPEAKER_01 14:02

Yeah, perfect.

SPEAKER_02 14:03

And so people can go there and find what they're looking for, and they can list themselves for free or they can sign up for a different level too. But it's it's to navigate, you know, for podcasts, for uh, you know, for resources, for anything, you know, it's affiliated with autism today and with circuitera. And it's it's been you know a lot of work, but we want to make it really seamless and easy for parents, professionals, educators, hospitals, clinics, you know, anybody to be able to go there and find what they need. And I know other people, like there's a lot of people out there that are trying to do this in their own, you know, their own place, like smaller directories, smaller places where people could find the information, like what we used to call. I don't know if you remember, you're too young, the yellow pages.

SPEAKER_01 14:57

Yes, right. No, I remember that and chamber of commerces, and but I don't think people take advantage of those things or even go looking for them, right? You're right about that, and that's hard.

SPEAKER_02 15:10

Clear, you know, that this is what it is autism directory.

SPEAKER_01 15:14

It's fantastic, exactly.

SPEAKER_02 15:17

It's like finding a needle in the haystack, you know, there's a lot of different places to go out there.

SPEAKER_01 15:22

But yes, and if you are, you know, looking for something in your general area, why not check the autism directory to see what resources are there? Maybe you find someone and they say, Here, go to this place. You know, there's the wonderful thing about connections and referrals and recommendations, and that's something that is just a very like beautiful, like moving flow in the autism community that I found is that there's not a speech therapist that's going to say, Oh, I'm the only one here that will help your kid, you know, and they say, No, you need this OT, you need this possibly ABA therapist, you need this work transition therapist or Voke Rehab. There's a a group and you know, this beautiful team of people who can help assist you throughout your life in all of the different areas and parts of your journey, and to have a place to have house that information and have that accessible, so important, so important. Are you guys thinking of making like an app? Does it have one?

SPEAKER_02 16:35

Definitely. That's you know, we're constantly engineering and developing the back end, the front end, everything. Yeah, we live in this, we live in it right now because it's so important to make sure all the I's are dotted and T's are crossed. You know, we have all the podcasts, we have all the resources that people can sell their own resources.

SPEAKER_00 16:57

That's great.

SPEAKER_02 16:58

A place for artists, a place for musicians, a place for you know, just whoever you know needs resources.

SPEAKER_01 17:08

So, not just providers, then that is just that's even more incredible. It's literally an autism directory.

SPEAKER_02 17:18

It's a circle of care for help you need now. Yeah, basically. It is it is there's no time like the present.

SPEAKER_01 17:26

And you know, we're in such an era right now of our lives. The I would say the most awakening kind of their autism has been heard by more people today than ever before. Whether it's in a good or bad way, I'm not going to go on to that, but the word itself, the word autism is more widely known now than ever before. And we really have this opportunity to foster and grow, you know, what the truth of that really is, what the the what it the meaning behind it, how individual it is for every single autistic individual going through whatever their experience is.

SPEAKER_02 18:08

Yeah. I know. I know I get it. You're talking to the converted.

SPEAKER_01 18:14

Isn't that the truth? Yeah, it's it's powerful. And I think that especially people like yourself and and people who are in, you know, podcasts and in have platforms that can really generate a positive and very clear understanding. You that's funny. I brought up clear when Temple and I had our conversation. I

Clear Communication For Neurodivergent Lives

SPEAKER_01 18:40

was going to be interviewing one of the what was his name? Dang, it's not gonna come to me. Simon, he was like a chef on a chef's uh show or whatever. And we were talking about how can he make his presentation more neurodivergent friendly? And said clear and make everything clear, make clear pot, clear thing, clear. And I just thought, oh, what a beautiful idea. And I really like that. Like I like to make those changes in my own life. Like, I like to get clear, I like drink out of clear glass things, see, see things clearly, you know. And I just I really resonated with me how much that worked across a whole span of things, you know, not just for speaking.

SPEAKER_02 19:27

Oh, I know, I know. One of my books is called perfectly clear, yes, yeah, because I'm a gemologist by trade, and so it was about buying diamonds, so it was perfect, it is perfectly clear buying diamonds for pleasure and profit.

SPEAKER_01 19:41

Wow, I had no idea. We learn about our wonderful guests, right?

SPEAKER_02 19:48

A gemologist, that's why yeah, I traveled around the world buying gyms because my mom was in uh worked for Pan Am and I always wanted to travel, right? So I went to Africa, to Sri Lanka, to Thailand, all across Asia, and met with suppliers and went to the mines. Yeah, oh my gosh, it's amazing how our kids are so much like gems. Yes, you know, if we if we focus on their gifts or strengths, then we'll see the beauty. Like if you shine the light on the gemstone, especially star sapphire, you'll the star will come out. Wow. And you'll you won't see it unless you do that, and you won't you won't see the star unless it has these inclusions inside of it. Not imperfections, but you know, they're just part of that stone. Yeah, and I used to do that in my presentations. I went out and I bought a bunch of little star sapphires and some little pin lights because they didn't have cell phones back then. Yeah. Everybody's like, You're gonna do that? Don't you think somebody's gonna steal them? You know, and I I had them shine the light on the star. And the star just it comes out. If you've seen a star sapphire, it just shows itself, you know.

SPEAKER_01 21:13

That's absolutely I couldn't agree more because I in my own child, I couldn't, I could definitely see those who came and didn't believe that he had these abilities that were like you said, a little rain man that is a lot like my kiddo. And there were people who just you know would see right past him and just he never had the time of day for those people, but those one or two or few that, you know, just said, Oh wow, look at this and how incredible. And he would just light up and he would show himself and he would express to them how in the way he could, you know, with those people, the the connections that he was making with them. And it's been a long time. We haven't had

Seeing Gifts Like A Gemstone Star

SPEAKER_01 22:00

We did Special Olympics this last year. That was fantastic. That was a different kind of experience. I it was wonderful. What an embracing community. Just everyone there, the parents, the kids, you know, everyone hugs you when you get there. I wasn't used to that. I love it. I love it. And and DJ really, I don't know that he, I hope that somewhere in him he like uh liked it as well and you know appreciated it. He went through the motions. So, but at the same time, when he got a gold medal and he had the ribbon, and you know, you just see him light up and maybe had an understanding at that moment that he had done something big, that people were proud of him, that he could be proud of himself in that moment. And it's those little tiny things that happen very few times in our lifetimes with some of our kiddos that boy, it just changes everything, right? And you're just like, these are the times you just those are the most important things, those are the our graduations, our you know, our prom dates, our everything. Those are that moment standing in the front yard holding a little ribbon, all of those days wrapped into one for me. Oh, isn't that the case, huh? Just learn to appreciate things on such a different level.

SPEAKER_02 23:26

You do, you do. In my chicken soup book, Chicken Soup for the Soul, Children's Special Needs. The very first story is Welcome to Holland. And I don't know if you've heard that story, but it's about a woman who's all dressed up, ready to go to Italy. She's really excited about going to Italy, and she bought all the high heels and red dresses and all the things to do in Italy and all the maps and everything. Was on the plane, and lo and behold, the plane lands in Holland. And she gets off the plane, she's like, What the heck am I doing here? You know, and you know, she was really upset because she wasn't in Italy. She played all of her friends were in Italy. You know, her her whole idea of what this trip was gonna be about was Italy, you know, going and seeing Milano and Paris, you know, the whole bit. But here she was in Holland, and it wasn't what she thought it was gonna be, you know. But then she started looking around and she saw the tulips and she saw the windmills, and she saw all the calmness and the beauty in Holland. So she started to embrace that, and so the story is you know, about well, this is not what I ordered, but this is what I have, and I'm gonna enjoy it. I put a lot of money, I put a lot of effort into being here, and so she embraced that experience. So there's a lot of stories in that book that are like that from different walks of neurodiversity, yeah. Beautiful, all the way from talent, yeah. Everything there's but anyway, I love that story.

SPEAKER_01 25:08

Oh, that is amazing. I'm I'm gonna have to dive deeper and find out about all of these books that you've written and co-written and get to know all these things a little more. Oh, it's it's so nice. I'm so glad that we got this opportunity to get to know one another better and and have this chat. And the autism directory is is such a beautiful resource and a beautiful heart space for you know what your intentions are behind it. And I think that that truly is what makes a community is when you have people who put their their passions not because is expected of them, but mostly because it wasn't there before and you needed to create something

Milestones That Hit Different

SPEAKER_01 25:55

that was. And I think that we just are are so blessed as like these parents in this position to, and we're neurodiverse as well, and we still have this opportunity to not only spread the awareness and the understanding as a parent, but as ourselves and as we've navigated this world in a different way, as at least for me as a late diagnosed autistic, to kind of have this understanding of what my life looked like up until that point, and then to say, wow, if I could have, who would I have been? You know, if I would have had all these other things, and then say, Well, now I can offer this beautiful set of standards or whatever to my kids and to their you know, friends and and things, and just to know that you know belonging begins with inviting in and really you know with your heart and really inviting in to be curious of the of the person you're you're having with you. So exciting. I love this. That's great, yeah.

SPEAKER_02 27:09

So how is

A Teen’s YouTube Channel And First Paycheck

SPEAKER_02 27:10

DJ doing?

SPEAKER_01 27:11

Is he yeah, he is he's good. He I think you'll love to hear this. He actually he loves YouTube, right? What 16-year-old isn't on YouTube, and he's been creating his own number block band series for quite some time. Number blocks are the it's it's a preschool activity, but they're it it they have a Netflix cartoon and everything, and it's these you know blocks that stock stack on top of themselves to create higher numbers, and so you can imagine the love of the the numbers and the stacking and the blocks and all of the things combined, and he loves some music. So he DJ taught himself piano when he was just uh very young. We got him a keyboard and we would go in and he'd be playing the T-Mobile jingle, or you know, something he could hear, he would be he could hear it and just play it, and so it was incredible. He was reading at one and writing at two, and so you and you you remember the your baby can read program? I we did that, that's what we did. I got the flashcards, I put the DVDs in. He was a month old, I had no idea about anything uh you know, neurodivergence or anything. I was just an overachieving 33-year-old mom that wanted to have my first baby be the, you know, the genius, and he is, he's the genius of the family. Um but you know, I the opportunity that came from that was that when he was two, he started writing just like in chalk, and he's just started spelling all these letters and words, and he was non-speaking until he was five. So that gave us the opportunity from two to five to communicate, to be able for me to write things for him to read them. Do you need chips? Do you want to go on a walk? Do you need a bath? Do you you know, kind of those things? And I would just have charts all over the house, all over the house that he would read and point to. And we had our own peck system before I knew that that even existed, you know. I was just looking wanted, I was determined enough to just be whatever he needed me to be for him. And today he, like I said, has his YouTube channel. He has 12,600 subscribers, something like that. That's great. He monetized about in March. I want to say about in March, bless you. He monetized, he has made like $175.

SPEAKER_00 29:46

Wow, so proud of him.

SPEAKER_01 29:48

I'm like, DJ, is this your first job? Like, you literally have a first job, you've made your money on your own creations from YouTube. So his dad and I are really trying to celebrate him and and say that to him as frequently as we can. Like, we're so proud of you. You you have a job, or you know, you're 16, and this is your first job. And so that's great.

SPEAKER_02 30:12

It is.

SPEAKER_01 30:12

I mean, it's great. And the future tellers, no, they said he'd never do anything like this, Karen. He would never do anything like this. So they know. What do they know? But they're world-renowned and they've written several books. Oh heavens, you know what? Can you do? Just kind of say, I've invited him onto my show. Isn't that funny? Our psychologist that that inner that diagnosed DJ, I I invited him onto the onto my show because I thought it would be a fascinating discussion to have with him. So but he never read my my message. I could do an interview with him. Hey, well, I'm gonna send you his information. You probably already know who he is when I do it, too. How funny will that be? But oh my gosh, this has been so much fun. Thank you.

How To Join Autism Today

SPEAKER_01 31:03

For uh my listeners, please, please go and if you're not signed up for autism today, get on the mailing list asap. You can also find, of course, on their website the autism directory. And I'm sure that the website is autism today, if I'm not mistaken. So not hard to find. Yes, right, exactly.com and we also have a canadian we have a Canadian organization too.

SPEAKER_02 31:32

So we have two nonprofits in two countries. I love that. Yeah, and so one's dot com and one is.org, which you can go ahead and put to.com, which is the most you use because there's more people in the US, yeah, yeah.

SPEAKER_01 31:47

And and just I think more accessibility, you know, for for that is is so needed. Thank you so, so much. This has just been such a pleasure and an honor to have you. Thank you, Jesus. I've been looking up to you longer than you knew that I existed. So it's fun to kind of full circle and meet those people that you know you've always looked up to. So thank you so much.

SPEAKER_02 32:11

Thank you so much. And I'll tell you about my next book next time.

SPEAKER_01 32:14

Oh, please do. I would love to have you back and and definitely talk about your book and everything that's at please, please come back.

SPEAKER_02 32:23

Thank you so much, Sarah. It was wonderful to meet you.

SPEAKER_01 32:26

Oh, I can't wait to stay in touch. I'm just this is such a great connection that we've we've got to make.

SPEAKER_00 32:32

So lucky, thank you. Thank you.