Interview between Speaker 1 (Meg) and Speaker 2 (Tiffany Hammond)
Episode 80: What Families of Autistic Kids Wish Providers Knew
[Introductory note]
Hey, it’s Meg. I just wanted to update you about the Learn Play Thrive Education Hub. Things are changing fast over here. We now have a live two-hour course with Rachel Dorsey. It’s called ‘A Crash Course in Neurodiversity-Affirming Goal Writing’. This is completely revamped from the last time we offered it. So, if you took it before, take it again. This is now enrolling and will fill up fast. We also have folks signing up in droves for our next Neurodiversity Continuing Education Summit. We’re working on getting it registered for ASWB CEU’s as well as ASHA and the AOTA. As always, we have our longer comprehensive self-paced courses on strengths-based visual supports, AAC and goal-writing, as well as a one-hour ethics course on sex. We offer group discounts. We recently had a school system enroll 60 people; we have a therapy company looking to enroll 400 folks in the Summit. So, get your group together and reach out to us. If you are still throwing away your continuing education hours just to get your license renewal done, this is your call to make a new plan. You can check it all out at learnplaythrive.com/trainings.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify Autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Ferrell from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘Autistic person’ rather than ‘person with autism’, because this is the preference of most Autistic adults. Being Autistic is a part of their identity that they don’t need to be separated from. Join us in embracing the word ‘Autistic’ to help reduce the stigma.
Welcome to Episode 80 with Tiffany Hammond, author of ‘A Day with No Words’ and the person behind the social media site, Fidgets and Fries. On the podcast, I often talk with Autistic women who were diagnosed after their kids were diagnosed as Autistic. And these women often express how much they were able to find self-acceptance once they learned they were Autistic. Today’s conversation about Tiffany’s own journey towards finding out that she was Autistic is really different from that. And Tiffany explains her experience living at the intersection of being Black and Autistic diverges from that of many of the white Autistic mothers who we’ve heard from on the podcast. She shares what it’s like being the parent of a newly diagnosed child and receiving mountains of assignments and things to tackle. And she has a really practical and helpful analysis of how this could have gone differently for her family. Her message is one that providers should have in the front of our minds as we support families. But in truth, we can go our whole careers without ever learning it. In the conversation, Tiffany and I dive into her wildly popular new book, ‘A Day with No Words’, which she wrote partly about her son’s journey who’s an AAC user. And she’s using her book to increase representation for AAC users everywhere. Tiffany talks about the hurdles she had to cross to get the book published in its current form and the impact it’s having. Tiffany Hammond joined us from her home in Texas. She has a master’s degree in developmental psychology. She’s a disability justice advocate and a writer who uses her story to change the narrative around autism. If you don’t follow her social media page, Fidgets and Fries, run, do that now. And then, make a quick stop at your local bookstore for her children’s book, ‘A Day with No Words’. Here is the conversation with Tiffany Hammond.
Hi, Tiffany, welcome to the podcast.
Tiffany:
Hi, thanks for having me.
Meg:
I’m really, really excited to sit down and talk to you. I’ve been following you online for a long time and watching all of the exciting things you’ve been doing lately with your book and your book tour. And I’ve learned so much from you and I want to talk about it all. But I want to start with you. Can you tell us a little bit about your story, finding out you’re Autistic, the impact that had on you, sort of what your journey was to this point that you’re at in your life now?
Tiffany:
Yeah, I’m Tiffany, voice behind Fidgets and Fries. I was diagnosed when I was eighteen. It was suspected years earlier, but we didn’t really like pursue it or do any further testing with it; I just did the therapies that go with it. So, the therapy without the formality of the diagnosis. But when I turned 18, I was a freshman in college, I was diagnosed with it, and it was the result of having a meltdown and I missed class. And I wanted a note. And I was told by other students that sometimes it was easier to get in with Psych Services to get the note quicker than it is to get in, like, the university clinic. So, I said, okay, fine, I’ll do that. It’s also closer to me, shorter walk. So, I went in. I just was, like, trying to get this note, and didn’t really realize that, like, the papers and things that I was filling out was helping them to assess me. And having the conversation with the doctors there, didn’t realize it was also part of assessing me. And then, when they give me more papers, to look at, so not really realizing, just figuring like, this is taking a long time, give me a note, and excuse note. And then, long story short, they called me in about two days later, and gave me a note for class, but then they called me in two days later for a diagnosis of Asperger’s at the time. And I was like, okay, cool. I just thought it was like a weird name for, like, anxiety. I just took the papers and the recommendations they put on it and, you know, thanked them for their time, went back to my dorm room, and put it in my dresser drawers, under a bunch clothes I don’t wear. And that was it.
I didn’t really read through it; I didn’t really go and want to understand it more. They gave me like an overview of what they felt that it meant, and what it meant for me. But I was already having a hard time in school. I was already different. I was already having a roommate who was part kind of hated me, and then part kind of scared of me. So, it was like — so, it was weird. And so, I was like, I didn’t really need more ways to stand out. So, I just didn’t focus on it. I just kind of went back to doing what I was doing and not realizing that what I was doing was part of being in this diagnosis. I told my grandma, and I told my husband, who I met in college, kind of around the same time, maybe a few months later. I felt safe enough to tell because I didn’t really, like, I kind of didn’t know him, but I kind of, I needed kinda someone to tell. So, those are the only two that really knew. And it was because he helped me, helped me through life and stuff. And I was kind of just getting on. And I was still struggling in the way that I was always struggling, but I just kind of stayed as I was. And the diagnosis didn’t impact me at the time that I got it. It just, it influenced how I responded to it, like, by hiding it and continuing business as usual. And in that way, but it didn’t fully hit me until I had kids, and then probably more closer to when Jojo’s diagnosis, was when I was like bigger. Like, yeah.
Meg:
You had a nonconsensual diagnostic process that wasn’t even really explained to you.
Tiffany:
Yeah. Twice, honestly. Like, the second time I went, I got diagnosed again. I was like 35, 36. And I went in because I felt like it had to be more than autism. I know I had depression and stuff. I just felt like there was something else kind of like under there. So, I went in and I did an evaluation looking for like other things, and then get diagnosed again with it. So, I was like, cool. So, I have, like, missed a diagnosis. I mean here, autism, you kinda gotta go like, okay. So, that was interesting. So, I had it twice in your life in a way that you weren’t really like expecting to have it. Like, I already know I’m Autistic, but I want to know if there’s something else going on with me, that’s in me. I’m like, I wanted to see what was going on. And so, they’re like, “Okay, here, here’s what’s going on, but also here. Autism.” Thanks, guys. It was fun. They gave me like the list of things you should do after you’re diagnosed with any of those diagnosis that they gave me, you know, they gave you, like, a plan, a quote unquote, ‘plan’ to follow. So, they gave me all that stuff, gave me a plan. And yeah, so it was interesting. But yeah, I didn’t really feel the weight of the diagnosis until I was, probably until Jojo was diagnosed. I started to feel it more, I started to think about it more when Aidan was diagnosed, that’s my oldest. And didn’t really kind of, like, sat and thought about it more deeply until my youngest was diagnosed. Because at that time, at that point, you have two, you know, I can’t really like ignore it much anymore, and I’m more so kind of struggling more with myself and the environment and things like that. So, life kind of has a way of making you confront things you didn’t really want to. So, as much as you want to hide things and ignore things, it always comes back. It finds a way to pull you in and forces you to look at those things it head on. And that’s kind of what happened there.
Meg:
Yeah. That’s so true, especially with parenting. Your story is interesting, because I interviewed so many Autistic women who are diagnosed after their kids were diagnosed. And they often say, “I wish I knew I was Autistic earlier because I thought I was just,” you know, some series of other things that was wrong with them that made them different. And people often say like, “And then I realized I was Autistic. There’s other people like me, it’s okay to be like this.” And they were able to start their process of self-acceptance. And it sounds like you got this diagnosis that you weren’t asking for and didn’t really have the resources you needed to understand it. And it didn’t necessarily have much of an impact on you. It was, you’re in college, or like, I don’t need another reason to make people think I’m different. And you weren’t able to do the processing of it until much later.
Tiffany:
Yeah. Also this is probably like upbringing and community, the community I grew up in. It’s interesting, because I think that also influences how I advocate and the things that I — and the perspectives that I hold. Because I was diagnosed before kids. But also, I also grew up in a community that it’s almost as if we can’t afford to have a disability. Like, we can’t, like, it’s just not something that we can have. We can’t show what many perceive to be like weaknesses and anything else that’s on top of the assumptions that people, that society will place upon us because of our being Black. Like, to be disabled in the Black community is interesting. And it’s different. That’s part of the reason probably why we didn’t, my family didn’t continue to pursue that. It was like, okay, she’s a little — she’s a little bit sad sometimes. She’s a little bit quirky. And she’s a little bit outside. So, everything was like, “Oh, she’s a little bit this, but is there something that we can put her in to, like, help with that?” So, yeah, so I had the therapies without the diagnosis. And I had the therapies with the mention of Asperger’s at like, 14, but it’s like, you don’t talk about it. You kind of, you do the other therapies, you get thrown into different sports, into different activities. And you have to interact with your peers, and you have to learn how to be like them, and so that you can survive in this world, and thrive in this world. And, you know, we’ve learned that from a young age, but we don’t think about what that means until we’re like into adulthood and stuff. So, yeah, so that’s part of also keeping it to myself.
So, when I was diagnosed, you’re already used to keeping those things to yourself. So, it wasn’t hard to continue to do that. So, it wasn’t hard to keep hiding it. It wasn’t hard to keep trying to be as other people were. Also, I didn’t — we had Internet. Like, you know, we had Internet when I was in high school, you know, AOL, dial up, and all that other stuff. Social media really wasn’t a thing big until it was like MySpace, and then it kind of turned into Facebook, and then Facebook was only for like college kids and stuff. But it wasn’t this big thing that it is now. So, I didn’t have neurodiversity movement. I didn’t have like a community to go to and things like that. You had a diagnosis that was something that impacted your mind. And then, like, people just kind of like threw you away and tossed you aside. It’s like, you’re treated badly for physical disabilities, yeah, but once it hits that, your brain, then, of people, like, they recoil and they want to hide away and things. And so, I didn’t have that, either. So, when I see other parents and stuff, and they’re diagnosed in like, 30s and stuff, and after kids and stuff, it’s like, I get it, because I was diagnosed later at 18, but it was suspected when I was years earlier, and I had to do the therapies. And so, I don’t fully connect with them, like, all the way. I connect with parts of their story, but not the whole of it. So, I think that my life influences a lot of how I see things, and how I advocate, and how I share.
Meg:
I appreciate you sharing that perspective. I want to talk about how this has played out with your sons and how their stories are similar to and different from your own, and how you’re approaching this. So, one of your sons, Aidan, was 17 months when he was diagnosed. Can you talk a little bit about that experience?
Tiffany:
That was interesting. He’s my firstborn. So, it’s like, you don’t have much experience with developmental milestones and things like that. So, he was born. And he was, I felt like he was just as all other babies. He was bouncy and happy. And he cried, occasionally. When I look back on it, I don’t know if he cried a whole, whole lot. But he seemed to enjoy a lot of things like toys, and people, and being in their presence. And he would just eat a bunch of SpaghettiOs, it was like his favorite thing ever. And one day, just kind of — he was like, changed. It was like, like a switch. And there might have been little signs before that, little subtle signs we didn’t see or anything. But for the most part, it felt like it was just like, nine days, he stopped eating the SpaghettiOs, he wasn’t as interested in people, he played with the toys differently. And he still wasn’t speaking. So, or even tried. He didn’t babble. And I think that was probably the main thing you noticed. Like, he didn’t really try to talk. He did all that other stuff so early, like, rolling over, sitting up, walking, and all of that physical, like, stuff. So, it was like, oh, that was early. And we were like, okay, cool. And thinking about it, but he didn’t babble. He didn’t try. And I was like, okay, when he was around one-year-old, I was like, he still wasn’t even trying to babble or anything. And I was just like, that’s cool. He’s only one. He’s only been on Earth for 12 months, you know, so, I wasn’t thinking anything. And then, like, 13 months came, and then there was still nothing. Then, 14 months, 15 months, and then, 16 months. And so, him not even attempting to babble or anything like that was concerning, coupled that with him not feeling as interested in people. And then, like kind of what he was doing with the toys, and he stopped loving on the SpaghettiOs. And like, just changing how he ate. I was like, oh, okay, then I started to get a little bit more concerned.
And then, around 16 months or so, my mom came down to visit. I think we were having like a party or something, and they came down. And then, we’re watching TV. And like, the Autism Speaks commercial comes on. So, like, at that time, it was like 1 in 500 or something. And it was listing all symptoms. And my mom was like, “Why don’t you go see about that for Aidan?” And I was like, “Oh, I ain’t sure, I don’t know.” At that time, it’s just, it’s autism. So, it’s not Asperger’s. So, it’s not like there’s no connection there. And I go and I just talked to his — I called the number, but it was like confusing how to figure out who to go to and who to talk to. But I think I called around and someone got me in touch with someone who’s ECI. So, like, early childhood intervention or something. And so, they came out to the house. And, you know, they’re like meeting with Aidan, and they’re doing their thing, and they’re writing their notes. And they weren’t qualified to diagnose, but they were able to set up the appointments with the state, to do the diagnosis. So, he got an appointment with a clinical psychologist with the state. So, we went in, and then they also put him on the waiting list for a developmental pediatrician. So, whichever one of those appointments came first. And because the waitlist for the developmental pediatrician, they told me, it was like, nine months, so we got in first with the clinical psychologist in the state. We went in, she saw and she looked at him for like, three minutes, maybe. And then, she was like, “Oh, this is autism.” So, I was like, okay. And then, she went into like, the more, like, more of the assessment and stuff. So, we got the packet and the diagnosis, and then this big thing, and all these instructions, like, here’s the books you need to read, here’s the programs you need to sign up for, here’s the waiver list you need to get on, here’s all these other things. So, at that time, at like 16 and a half months, that’s when we signed up for waiver programs, and my son is still on the list for that. And yeah, he’s still on the list.
Meg:
He’s still on the waiting list? How old is he?
Tiffany:
He’s 16. Okay, they are for — they had, wait, they have programs that were for kids. So, they put us on that list. He came to the top of that list around the age of like, eight or so. And he was qualified for that program. And he was on it for a little bit until they cut funding. And then, they were like, now they made the guidelines real, real, real strict. And so, Aidan ended up not qualifying for it anymore. The other waitlist that we signed up for, they were for programs that were adult programs, programs they get into when they’re 22, when they age out of all the other services that they would have. But they say sign up it for early because the waitlist is super long. And it’s like, 10 or 15 years long. And we’re like, okay, and so we signed them on when he’s 16 months. He’s 16 now, and he’s still, like, number 14,000, 15,000 on the list. He’s not gonna be at the top of that list when he’s 22. He’s just not. And that doesn’t even guarantee he will qualify for the service. That just means he’s on the list to be assessed to get this. So, but we signed up for that.
And then, I think, I want to say maybe a week or two later, was when the hospital called because that’s where the developmental pediatrician was. And they said, “Hey, we had a cancellation. Would you like to come in?” So, I said, fine. We came in, and we did like even more tests and things like that. So, that’s how we got a second diagnosis of autism. And yeah, that was pretty hard to deal with. And it was overwhelming. And it was like, well, you didn’t know what to do, you didn’t know what that meant, didn’t know first steps. You’re just lost, like, reading books and you’re trying to join different groups. They have an area and they started services for him at home, and then they signed him up for preschool. Because for him to even qualify to go to preschool at age three, he had to meet certain criteria for like public school, three years old, which he didn’t meet because he had a disability. So, he’s able to go half-day. And then, when he was four, he was able to go a little longer. But yeah, it was just it was, it was a hard time trying to figure all of that out and I still wasn’t really connecting his autism with mine. Because you’re still, like, focusing on him.
Meg:
Yeah. What guidance do you wish you had gotten when he was diagnosed?
Tiffany:
I think I would have loved for someone to say, you know, “Just breathe.” Like, you know, breathe a little bit. Take your time. And he didn’t change over the course of the night. So, the day before, when he didn’t know, to the day now you know, he’s still the same kid. He just has a diagnosis and you understand it’s a means to understand him more. And that you know what you can do to try to help him. But just breathe and take a break. And when they give you that big ol’ packet, like, it was like this big. Like, the first half was his testing. And some of the second half was all the things we needed to do, all the therapies we needed to get him in. And I do believe in the importance of early intervention. Like, I’m not even gonna knock that. Like, that’s important. But it was a lot. It was get him into this, get him into that, do it now, sign up for this, sign up for that, apply for Medicaid, apply for SSI, like Social Security, go for this, collect all the school reports, collect all the — like, it’s a lot. It’s a lot to apply for Medicaid; it’s a lot to apply for SSI. And I didn’t know what SSI was, I was just doing it. Because I didn’t know. But they needed school records, medical records, birth certificates, assets, all these things that, you know, you have. You gotta go and prove he’s disabled enough, you know, and that it’s going to be lifelong.
And so, like, it’s just like, part of it is kind of like, retraumatizing yourself over and over again. Because you’re like, the way he’s diagnosed, you feel real sad about it. I mean, you gotta go and prove that he has a diagnosis so you can sign up and get like, you know, different things, and then they don’t explain it well. So, I went, I applied for SSI, with all that, again, giving my whole life over to these people. And then, it gets approved for it. And it sends you a letter and I didn’t even know what SSI was. I was sent a letter and then sent like a check. I’m like, what is this? I don’t know what this is. And then, you’re going to read more of it. And you’re like, okay, it’s like supplemental income and help take care of me, cool. A couple of days later, they send a Medicaid card. I didn’t even sign up for Medicaid. Why does he have Medicaid? He has Medicaid because he has SSI. I didn’t know that, right. So, it’s just like, there’s a lot. You live in with a lot, they stack a lot on you. I just wish that, one, we had a better way to explain the types of services and stuff that they do qualify for a better way that we can understand what it means, and how to access those services. There’s a lot of stuff over the years that I’ve learned that we could qualify for, that we didn’t understand, that we didn’t even know about. I wish that they would make the sites a little bit easier to navigate to try and understand those things.
And I wish that someone told me that it was okay, and that you can just breathe, and you can take a break, and you can go somewhere for the weekend. Go enjoy yourself. Go for a week. Take that paper, all those papers, and just put them aside for a little bit. Yeah, you can still sign up for that stuff. But you can take three weeks, take a month, take what you mean, and just rest, and just enjoy your child and stuff. Like, a month isn’t gonna change it. It’s not gonna hurt. You’re gonna breathe easy. You’re gonna come up with a plan. You’re not gonna feel like rushed into doing stuff. And it was so weird to be so rushed in a state like Texas, and you’re just rushed to what? Because they don’t take very good care of their disabled population. I’m like, what are we rushing to? Like, I’d see if we were rushing to sign up for something that was coming to us, that was going to help us. And it wasn’t. We were just rushed to sign up on more lists, and another list, and another list, you know.
So, I just want parents to understand that it’s a lifelong diagnosis. And I know that a lot of parents hurt when they hear that, because I did. Because you didn’t want to have it, you don’t want your children to have something that the world will treat them so differently because of, and their life will be made exponentially harder. You don’t want that for your kids. And, you know, you feel sad about that, and it hurts. And you’re gonna have a lot of moments where you feel alone, and I just want them to enjoy their children and love on them as much as they can. And you can still help them. But you got to help yourself, too. And I think in all that, I forgot to do that. It was just like, bam, bam, bam, let me go, let me go, let me go. They said early intervention is key; let me do it, let me do it, let me get it, let me go. And I burned out. And I was ineffective as a parent. And yeah.
Meg:
This is such good feedback to those of us who are in front of these families, diagnosticians, or providers for young kids that we don’t just have a child in front of us, we have a parent in front of us, often an Autistic parent; not always, but often. And they’re having their own experience of their life, and their mental health, and their relationship with their child. And I think we can get caught up in like, do this and this and this and that, and forget that there’s a family in front of us that’s exhausted, that needs rest, that needs reassurance, that needs more than just a to-do list. So, I appreciate you reminding us of that. I want to talk briefly about your other son, Josiah, because your experience was really different with Josiah. you’ve talked about having to fight for his diagnosis, working with mostly white providers who didn’t really understand autism or autism in a young Black child. Can you talk a little bit about what that journey was like?
Tiffany:
Yeah, by the time we started thinking more about Josiah and him having autism as well, it was around the time that I started to read and hear the chatter about autism and of Asperger’s being under the umbrella of autism, and it’s starting to kind of like come together and merge together and being its own thing. So, I was already looking at Aidan and matching him up with my life. And then, I was seeing Jojo. And I was seeing like a little bit more of myself in him, in how he interacted with the world around him and the people around him. And then, by the time it I brought it up with his doctors when he was three years or so. And they were like, “Oh, we don’t really see it. Let’s wait and see.” And then, he qualified to go to pre-K. So, so fine. So, as he was in school, I started to see more, like more. So, he’s three at this time. And then, they’re like still saying, “Oh, let’s wait and see, let’s wait and see.” So, I’m like, okay, maybe he is just shy. But I see other things, but fine. Six-years-old, at that time, I was like, I’m not waiting no more, because I’m seeing more things.
So, I stopped listening to his doctors and the teachers and just demanded like referrals to go to other specialists and stuff. Because right now, they were like — that was like my hurdle, was like, it’s PCP’s. And, you know, in the schools and things like that, and I thought I had to listen to them. I was just like, nah, just give me referrals to places. So, they gave me the referrals. So, we went. He had a clinical psychologist, developmental pediatrician, and then, like, okay, it was a neurologist. So, we had appointments with all three. So, we went to all three. We did the tests for all three, and they were pretty, like, extensive. And they, you know, a couple of them actually came to school and observed him at school. And then, you know, they observed him in office and schools. So, they got a diagnosis of — at the time Jojo was diagnosed, they had levels. So, he had Level Two. And I was like, I knew it, like I knew it. But I feel, I think, his hit me harder, because I knew and I waited. And I mean, and I felt like — and I was seeing it. You know what I’m saying, like, people telling me that he wasn’t there, why I needed to wait. And I was like, I was seeing it. I just felt like I kind of like failed him. So, like, his diagnose hit me harder, way harder. It also hit me harder because he was around the age, like, he was beginning to express things such as, “Is something wrong with me, because kids don’t want to play with me?” So, like, it was things like that. And so, yeah, his diagnosis was pretty hard to take. And he was diagnosed at six.
And I’m going into the school, and I’m wanting like, you know, he needs an IEP, he needs this, he needs that. You know, and you’re giving him the doctor’s things. And, you know, they got to run their own evaluations and stuff. And I’m just sitting in here and the lady goes, from the school, is like, “Oh, they’re giving everyone autism diagnoses.” And I wanted to reach across the table and choke the life out of her. Like, I just, like, that’s how like mad I was. And I’m just sitting in this chair. And thankfully, my grandma was there at the time. So, she was able to like, you know, talk to her in the way that I would have loved to talk to her, just showing her that she wasn’t gonna stand for that. But in a way that was like nicer and kinder and things like that. Because I was mad. Like, I was mad. I didn’t just go — I’m giving you three different people, and three different, like, disciplines or specialties and stuff, like I went — I felt like that was something that I needed to do. Because I kept getting turned away. And they were like, well, he could get a 504, you know, and this, and this, and like keep on saying like, no. So, I was like, no, I need more. I need to have more. So, I had the clinical psychologist and I said, okay, let me make the appointment with the neurologist. Okay, let me turn around, make another one with the developmental pediatrician. I mean, I felt like I needed all three.
And so, and I still bring you all three. And they assessed him in three different types of ways, you know. They had, a couple of them, they might have used the same form, like the ADOS and stuff like that. But they evaluated him differently. Because they were coming from different specialties and things like that. Like, the neurologist looked at him a little bit differently. And they asked the questions a little bit differently. And they asked him questions differently. You know, the clinical psychologist had their own way, and the developmental pediatrician. And I’m like, I’m bringing you all of these. And you’re still telling me this. So, yeah, his process was longer. It was harder. It was more stressful. And it hurt a little bit more. But we got through it. Yeah.
Meg:
Yeah, it’s lovely following your family now on social media. I want to fast forward a little bit in your story, because you recently accomplished this huge, beautiful thing. You published a children’s books. It’s a New York Times bestseller. It’s called ‘A Day with No Words’. And you said that you wrote it because stories are the best teachers. And that your goal was to normalize non-speech communication and connection with your son, which I know we haven’t talked about your AAC journey. So, we can tie that in now. I just want to say one of the commenters on your book said that book, quote, “Teaches us the expansiveness of communication that is possible if our children are truly heard, respected, and supported.” It’s such a beautiful gift to readers. Can you tell us a little bit about why you wrote this book, what it means to you, and kind of what’s happening with it now that it’s being so well received?
Tiffany:
It’s so weird, because it’s like, I never thought that I was going to be a children’s book author, like, so fast, so soon, because I know I wanted to be a writer. But children’s books was like, I was like, that’s gonna be like my fourth or fifth book, you know, but not my first. So, when people would approach me, like different agents and editors, and from different publishing houses, and they were like, “Hey, have you ever thought about writing a book?” and I’m like, yeah, all the time. Like, “Hey, we think you’d be perfect for this children’s book.” Like, what in my content gives you the impression that I write kids books, because I will say, like, my content is different and, you know, more complex and deep and kind of harsh. So, I didn’t know if that was something I would be able to do. And I shared about the days that we have where we don’t talk. And that post was pretty well-received. And one of the editors suggested, “Hey, what about a book on this topic?” I said, okay. And long story short, we didn’t end up working together.
But the idea still stuck in my head. I got used to it. I was like, yeah, I kind of want that. Because when I do talk about my son, and I talk about non-speakers, I want — I am wanting a better world for them. And I’m doing that through the best way that I know how, and that’s writing. And that book stuck with me. So, every time someone approached me, I was like, this is the book I want to write. This is the book I want to put out. And it was like, some were okay with it. But they wanted the characters to be animals. And that couldn’t happen. So, we didn’t work out. And then, some weren’t actually okay with it. And they felt like there wasn’t a market for the book. So, we naturally, we didn’t work out. They wanted me to write something else. But I was like, nah, we good. We move on. That book was gonna get put out in any way possible because it was in my head. I hadn’t even wrote the manuscript yet. But the idea was there, it was stuck. And I’m like, I’m putting it out. It has to come out. But yeah, when I finally got the opportunity to write this book, it had to be done.
There’s a lot of stuff that my son faces that he shouldn’t face. And, by extension, we face it, too. And we feel it, too. And I wanted a way that could give people something that they can read that can inspire them, and something that would make them think more deeply about the interactions that they have with each other as well. I wanted to create that. And I was hoping that it would resonate with people, ’cause our AAC journey has been weird and wonky, and long, and hard. And a lot of times, it has been awesome, too. But yeah, my son was the only kid in his schools that use AAC, and when he was in school. And so, it was so incredible to see when I went on tour, all those schools, and I see all those kids have one, is like, awesome, is incredible. And I wish my son had opportunity to go to those schools like that, you know. And I think one of the schools was trying to put — or they already did get that, but they were putting an AAC device in every classroom. It didn’t matter if it was a special education classroom or a general ed, like, everyone would have it so that even kids that are considered neurotypical could use it if they needed it. Because a lot of times, everyone has those moments where they just can’t. We can’t do it. They can’t talk today, you know, for whatever reason, and that should be an option for every single person. And I was just, I was excited to see that.
And I was hoping that, you know, this book would also have people think more about their own needs and their own things that they have. You know, maybe today, you don’t. We’re in a world where we text all the time, and they look at my son like he’s alien. And they write in emojis all day, and they communicate in meme. So, it’s like, why is what we’re doing such a foreign concept to you? Like, why is that? So, I’m just trying to like, put it out there, push it out there to the front. And my hope was that it would reach so many people, and they would keep talking about it, and they would keep wanting it, and they would start to have some conversations. I wanted to start conversations, and I hoped that book will do that. And I’m just, you know, happy that, you know, people are reading it, and people are buying it, and that it’s, you know, cool. I didn’t — not gonna lie, I was gonna say I didn’t expect it to be a bestseller. Like, I knew it was gonna be a bestseller. Like, it was the biggest thing that I was like, I want this book to go far. And I want it to go wide. Because I felt like I had something to not only prove to myself, but to those people who felt like there was no market for it, and that it needed animals, and that it needed, like, I wanted to be like, screw you people. It’s all just the way that it was intended to be with us as characters, the main characters, this story, and for this audience, and that audience bought it.
But I wrote it because I wanted it to extend beyond the autism community. And that’s why I was cool with the title. Because I know that he knows words. And he doesn’t, he just doesn’t speak the words. But when people that exist outside of this community, and they find out that he doesn’t speak, they assume he doesn’t know words. And so, the title fit. It was for them. It was to challenge those people. And when they read it, and they know that title, and then they read the book, and they realize he has no words. What do you feel like at the end of that? Like, when you finished reading it, you see all the words he did. And so, that’s why it was important for me to include the author note. Because I’m really trying to reach people outside of autism community. So, I know like you have all these, like, these warring sides within this community and I reside at the intersection of parent and Autistic and I’m like, we need everybody. I need everybody outside of this community because you have some really, really, really hardcore advocates who are like, it’s nothing about us without us, and stuff. And I believe that to an extent. I’d be like, I mean, I need politicians, I need educators, I need researchers, I need scientists. I need everybody on this because it took this monumental, coordinated effort by all people to keep us in the position that we’re in. So, it’s gonna take an equally massive movement of all bodies from all walks of life to make this world better for us. We can’t just do it alone. So, I wanted this book to extend beyond us, go far and wide. And that’s what I’m trying to do it all, with every book I write, I’m trying to do that. Every book, and everything I do.
Meg:
And you are. You are. Your book and your social media have such, such reach and are resonating with so many people. I’m curious, can you tell the story of how your sons reacted to the book?
Tiffany:
Um, they’re teenagers, they don’t care. So, it’s like, you know, they’re like, whatever, my mom made a book. I feel like they’re proud. But, like, proud in a teenage way. Like, you know, it’s just kind of like, you know, “Oh, yeah, cool. It’s mom, she made a book. It’s cool,” you know, like, you know, move on, and things like that. I know that, for Aidan, and I think he’s cool. I think he enjoys it, and he sees himself in it. But at the same time, he’s also 16. And the book’s young for him. So, he’s like, “Eh, I read it a couple times. It’s cool,” you know, so, we’re working on Percy Jackson and stuff right now. We’re reading through that. And I felt like that’s more entertaining for him. You know, Jojo, he’s just like, “Yeah, it’s cool. My mom wrote a book. Yep. Yep.” You know?
Meg:
It sounds exactly right. Yeah.
Tiffany:
Yeah. I think that they’re proud of me and the book and things like that. It’s just, they’re teens, you know? Yeah, they’re teens, they’re in their teen world, and they’re like, “Cool. Yeah, go mom,” move on, you know, that’s kind of where they’re at, like, come on. But yeah, I think that they like it, they enjoy it. Jojo’s read it to Aidan a few times. And yeah, I think they’re proud of it.
Meg:
Before we wrap up, is there anything that you want to bring us back to, especially thinking about how folks supporting Autistic families, Autistic kids, and their caregivers can do to be more empowering, intersectional, collaborative with the folks we support?
Tiffany:
I think one of the biggest things that you can do is just, is listen and behave in a way that your client and their families feel safe enough to open up to you. There’s a lot of, I know like for in our community, there’s a lot of things that we don’t share, that we could share, but we don’t. Because we don’t feel like y’all understand that. But it’s definitely impacting our lives, the lives of our children, and how they respond to those things. Also, to be aware of the different needs that your clients might have, especially those who are multiple-marginalized would have. So, like, a lot of times, I was, when I felt safe enough to share, I was telling my son’s therapist that we needed to work on other types of things than they felt were unnecessary. Like, I needed to get my son to wear socks, that was the biggest thing that had to be done, teach him how to put it on, teach them how to keep it on, and then put something on his devices and help him to convey that he has a sensory issue and he doesn’t always like to wear socks. Because we had CPS called on us because he didn’t wear socks. So, this was a need, you know, it wasn’t a need before, but it’s a need now, you know. And they were like, at first, they were like, “I don’t think this is something we should be working on,” or like, “How am I supposed to help him with communicating needs?” He has sensory needs, because at the time, he was early on in using AAC. Like, I don’t know how y’all do it, but we need to figure out how to do it. You need to put a button on there that says, like, if he can’t keep the socks fine, and he happens to just take them off, where’s the button to add on here this explains that, “Hey, I’m Autistic and I really don’t like socks and they made me feel bad”? How do we put that on there, and how do we get him to push it? Like, we need to get that, we need to get there. And they didn’t feel like he was there because we were still on, like, you know, the pics stage and stuff. And I was like, you know what? We gotta figured out how to do it. Because this is what I need. ‘Cause I need my son in my house, like, I want him to move out of my house because he ain’t wearing socks, right?
So, let’s just be having a way to feel like we have, the people that are working with our children, we want to feel safe enough to share the things that’s going on in our lives. Because the people that work with our children are important parts of our life as well. And we have to trust them. And we have to have open communication with them. And being able to understand, you know, our all of the needs, not just of the client or the student, if you’re school-based, but of the of the family. Because disability doesn’t just impact the person that has it, it impacts the family. And so, I think that, for us, in our experience, a lot of our son’s therapist didn’t always think about how it was for family, how it was for us as well. And I think that when we finally found a couple that did, it was, like, amazing, and it felt like real collaborative, and it felt like we were all on this team. And then, they were also like family because they cared for all of us as a family. And we were working together to see, you know, how best to help. And, you know, doing community things, too. Community based things, not always just sitting in the office. Like, even if y’all couldn’t leave the office, because if you’re at school or whatever, but giving us instruction and guidance on what we could do when we’re out in the community ourselves, you know, things like that. Because we’re not always in school, and we’re not always at home, and we’re part of this world, and we should, we deserve to go out. So, things that will help us to be outside, to be in the community. Because people need people, including us. So, yeah, just, yeah.
Meg:
Such lovely advice. I appreciate how you started with asking us to listen. I think, especially new providers can feel a lot of pressure to come in and, like, know something, teach something, share something. And your story really illustrates how much we can miss when we’re not starting with an openness and an interest in listening, and learning, and being present, and being on the team, of like you said, not just our client, but our client as part of a family. And then, zooming out from that as part of a community and making sure that folks feel included and can access community. This is such good advice to any provider supporting Autistic folks. Tiffany, tell us what you’re working on now, and where we can find you online.
Tiffany:
You can find me online, Facebook, Fidgets and Fries. I’m on Instagram @fidgets.and.fries, or dots. I do have a Tik Tok, same name, and I do have a X account. But I rarely go on those. I don’t understand them. So, but I’m on a social media break. But I do have a manager who’s gonna post on Instagram and Facebook for a little bit for me. But I’m also on Substack with Fidgets and Fries as well. And I do have a Patreon, same name. I am working on another children’s book that my agent sent out to about over a dozen publishers so far. And we have some interest. So, I’m excited. So, I’m working on that. I’m working on an adult non-fiction book that kind of details like my life and how I came to be Fidgets and Fries, from kid to now. And I am working on an adult picture book. So, I’m excited about all those things. So, yeah.
Meg:
Me too. When you started talking about, “Look at my social media, do you think I would write a children’s book?” I was like, I want to read your memoir.
Tiffany:
Yeah, I’m excited about that one. I’ve like, been working on it for like a bit. At first it was like starting off where someone would say just go through all your old posts, and then your essays and stuff that you can kind of like piece them together and put them in there. And I started it that way. But then I was like, I’ll still do that in there. But I want to like, I’m gonna add more things and, you know, kind of put that all in there. So, I’m excited about that one and how that one’s gonna turn out. I’m excited.
Meg:
And where can people find ‘A Day with No Words’?
Tiffany:
I do have a site. So, I have adaywithnowords.com and it has most of the places listed that you could get it. It’s in Barnes and Noble, both online and in-store, and a large portion of them. It’s on Target online and then just now it started popping up in Target stores in physical cool locations. So, I’m excited about that. I think we’re working on getting it in more Target stores because it’s so much excitement over it and about it. So, yeah, there’s there. On Walmart online, Amazon, of course, independent bookstores, I would definitely check those first if you want to keep the money in your community, shop indie. And if they don’t have it in stock, you could probably order through them and they have a way to get it. But yeah, it’s, Books-A-Million has it. So, it’s like pretty much, you know, everywhere books are sold except for discount bookstores like Half Price Books, they don’t have it. Or, you know, vintage bookstores, they wouldn’t have it either. But most major retailers have it and your independent bookstores should have it.
Meg:
Thank you so much, Tiffany.
Tiffany:
Thank you.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
