Interview between Speaker 1 (Meg) and Speaker 2 (Tiffany Joseph)
Episode 41: Nigh Functioning Autism: From Shame to Empowerment
[Introductory note]
Hey, podcast listeners! Meg here. If you’re a professional who listens to this podcast, chances are your work reflects both your values and pro-neurodiversity practices. But if you want to test that theory, I made a free quiz just for you. The Learn, Play, Thrive quiz takes less than two minutes to complete. And after you finish it, you’ll get tons of information about your strengths, your blind spots, and possible next steps. You’ll find the quiz at learnplaythrive.com/quiz. So, give it a shot, see how you do, and maybe learn something new. Now, here’s the episode.
[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 Proctor 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’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 41 with Tiffany Joseph. I’ll be honest with you, this episode was pretty hard to name because we cover so many important topics like functioning labels, AAC access, how race intersects with disability in the autistic community, aggressive behaviors, and even more than just those things. But the thread that I traced throughout the conversation was one of moving past engendering shame in our autistic clients and instead, empowering true authentic participation in daily life. And Tiffany traces this thread so beautifully in sharing her own story. I’ll tell you a little bit about her. Tiffany Joseph, or TJ, is autistic and runs the Instagram and Facebook pages ‘Nigh Functioning Autism’, where she posts about AAC, being black and autistic, epilepsy, ADHD, OCD, and so many other topics. She uses AAC to communicate most of the time. TJ works with families on AAC access through her website and interns with Reach Every Voice. She’s also a single mother to neurodivergent kids. In this interview, you’ll hear Tiffany answering questions on her AAC, which in this case, she’s using answers that are typed into a Word document with a voice output. I sent her the questions in advance and she had her answers pre-typed. So, there isn’t as much back and forth on any given topic but her answers are so insightful and so interesting. You’ll hear a little pause between when I finish asking the question and when her answer starts playing, and we didn’t edit out that pause. So, just hang in there and you’ll hear the answer after the brief pause. You’ll also hear Tiffany elaborate on one of her answers by speaking as well. Okay, here is this wonderful interview with Tiffany Joseph.
Hey, Tiffany! Welcome to the podcast. I want to start by asking you about your Instagram handle, Nigh Functioning Autism. What does it mean? And why did you choose it?
Tiffany:
I chose it because I like puns. And at the time, I was not functioning. Like, I didn’t even have the appearance of being a functioning human when I started my Instagram. So, it was a play on words to sound like ‘high functioning’ while making fun of functioning labels because they’re inaccurate. And people would say I’m high functioning based on the few things I can do. But the mental health establishment definitely told me I wasn’t functioning, lol.
Meg:
I love that. I love puns too, and that really lands. I love your Instagram handle. And that ties back to a conversation we had earlier on the podcast with Ido Kadar, who’s a non-speaking AAC user and he really talked about being called ‘low functioning’ because he was not speaking, where his experience didn’t match that. And now, you’re giving us the opposite of saying, I might be called ‘high functioning’ but things in my life were going very badly. And nigh functioning really is a nice just sideways look at that. I want to ask you; can you tell us a little bit about your story and your own AAC journey?
Tiffany:
So, I grew up speaking what seemed to be early and had great pronunciation and denunciation. What they didn’t realize at the time was that speaking in and of itself isn’t necessarily communication. So, I technically spoke early or on time, but my speech was 100% echolalia and scripting for many years. I also could read early and recite letters and sight words, but that were all memorization, and there was very little novel or spontaneous flow of thoughts through my speech. What changed for my speech was learning to write or put the letters and words together to form my own sentences. That somehow opened up a channel for communication entirely. Which is why I always say, AAC would have helped me open up communication way earlier.
Fast forward to my 20s, and I figured out I could write things that I felt deeply. This is also when social media started. And I finally had a way to write my feelings to people I knew on a regular basis. Then, after my most recent ASD diagnosis, I was in therapy and I still can’t use my speech to talk about feelings. But my therapist suggested I write things down for our sessions. Because talk therapy is pretty hard for someone who can’t talk about feelings, lol. From here, and considering the terrible toll not speaking on the phone has been on my adult life, I asked some of my friends who were already full-time AAC users for help. Ever since, I have been able to make doctor’s appointments, do podcast interviews, et cetera. I was constantly saying ‘No’ to people who needed to talk. And now I don’t have to.
Meg:
That is so interesting, and ties really well into Episode 40 of the podcast where we talked about gestalt language processing and delayed echolalia. And you really drove that point home when you said ‘talking or speaking wasn’t communication for me’. And that’s so easy for those of us who are traditional analytical language processors to completely miss and never consider. And it really highlights the importance of therapists, professionals, whoever in kids’ lives, teaching those literacy skills and writing. And you’re nodding at me. You know, as early as we can and as well as we can, we’re going to follow up with that with the upcoming episode on emergent literacy too. I think it’s really important. I want to ask you about another of your Instagram posts. You said, quote, “My internalized ableism was once my main guide and navigation system on this trip,” end quote. Can you tell us a little bit about your journey from there to where you are now?
Tiffany:
When I was diagnosed with anything, including autism, it was always shameful. I wanted to hide it and told nobody. This is how it went when I was diagnosed on the spectrum at age 19 and at age 34 of life. I went from blaming all of my failures on being autistic and disabled, to recognizing that all of me brings both strengths and weaknesses. I have a lot of strengths that arose from being autistic and I can’t separate those from each other. So, instead of blaming autism on why my ears hurt from sounds a lot, I acknowledge that while also being grateful that I hear music so differently and beautifully.
Meg:
I love that. And that ties so nicely into one of the main themes of this podcast, that knowing yourself and accepting yourself is the most important part of anyone’s journey. And we, as professionals working with autistic people, so often get that piece wrong, that we’re missing the opportunity to join our clients on the process of knowing and loving and accepting themselves. And instead, often, we’re doing a lot of harm. So, it’s really interesting to hear how that’s played out for you. One thing that you wrote about on your blog was ‘autism is a brain-body disconnect’. And we did hear a similar message on Episode 9 with non-speaking AAC user, Ido Kadar. Can you tell us a little bit more about that perspective?
Tiffany:
I always say that I wish autism was seen more as a physical disability. That is what would make people understand how much of the motor and sensory issues present in autism appear to be cognitive or behavioral problems. Physically being unable to initiate movements when we want makes it seem like we don’t understand the words spoken or written. Touching the wrong answer even if you know the answer causes students to be drilled on things they have known for years simply because they can’t get their hands to point to the correct answers. Whole education careers are based on what people can or cannot show as their understanding from toddlers to adulthood, no matter what a person knows. It’s about what they can show. And that’s unfair.
Meg:
I really appreciate that tie in to how important this idea of presuming competence is. Because you’re saying sometimes often, we can’t show what we know. And when that’s all that matters, we’re really missing the mark on the assumptions that we make about our autistic learners; which, like you’ve said and like others has said, impacts how you see yourself and what you internalize, and what opportunities you’re given. Drilling the same thing over and over again, that you know the answer to but can’t motorically show isn’t building a meaningful life at all. No, and I see you’re shaking your head at me in agreement. So, thank you for that perspective. I want to ask you about another one of your Instagram posts. I obviously love your Instagram. Okay, so the question was asked, “What’s something that you’ll get a lot of hate for if you say it out loud?” And you replied, “Being actually autistic isn’t the same as being black-tually autistic.” So, the word ‘black’ and ‘actually’ combined there. Can you tell us a little bit more about being black and autistic, and your experience in the autistic community?
Tiffany:
There is a lot of subtle and direct racism in society, so the autism community mirrors that. A lot of what is seen as acceptable in the greater autistic community, such as criticizing families about therapies used, judging people on the basis, or terms and symbols, et cetera, are just not seen as acceptable in the black autistic community. So, a lot of non-black autistic people clash with others when we see advocacy done like that. Also, a lot of things that would possibly harm black autistic children are being taught to black families that we don’t agree with because we know the danger that potentially places the family in. For instance, a kid with sensory issues may not shower. I have heard non-black autistic people say that’s fine, but we would get CPS called if we allowed that. So, it’s not feasible.
To end on that point. Tiffany, the other Tiffany from Fidgets and Fries, said that most of what you see in, or what you think is like from the autistic community is actually not from the black and brown autistic community. So, a lot of the things that people might see that look like they’re, you know, what the autistic community — where they’re going, and you know, what ideals and priorities might exist, are not actually universal throughout the autistic community, when it comes to if you pare it down by different demographics. Because of just, we just don’t have a lot of the same privileges, and neither do the families who have autistic students and loved ones. So, it’s just important to recognize that there are definitely going to be a lot of differences that people are not aware of, because our voices are kind of drowned out.
Meg:
I really appreciate that perspective, and I want to keep exploring that on the podcast. So, in Episode Six, we had Joy Johnson on the podcast and I got pushback from that because she is trained as a behaviorist, and she’s black and autistic. And the reason I had her on the podcast is because she said a lot of the messaging from neurodiversity-affirming people right now is ignoring the pressures and challenges of being black and brown. And I just said, I want to hear more about that. And it really was a similar message of, yes, compliance is not the goal. And when you’re threatened with police violence in your community, compliance can be important in certain moments.
Tiffany:
Yes, definitely.
Meg:
And I hear you around pressures, like Child Protective Services. And I think there’s a lot of larger conversations we could be having to expand on that, too. And I want to keep doing that on the podcast. So, thank you for bringing that. We’re talking about cultural competency around neurodivergence, and it just intersects over and over and over again, with every other important type of cultural competence, and we don’t want to lose sight of that. And we have blind spots. So, you have this post on your blog on reframing aggressive behaviors. So, okay — Learn, Play, Thrive, we are explicitly opposed to behavioral-based therapies. And I get a lot of questions like, “But what about aggressive behaviors? I need to send them to ABA because they have aggressive behaviors.” And I want to dive into that question with you. What do you wish therapists knew about autistic kids who have aggressive behaviors?
Tiffany:
In these cases, I wish therapists and everybody knew that aggressive behavior has a reason. Even if the reason is for attention, there is a reason. But the main thing is that there is likely a physical pain or emotional one. Always look medical first, like GI pain, silent seizures, migraines, et cetera. But after that, imagine it has to be a trauma from not being heard, or having lack of communication. Like did the student overhear someone saying something untrue or negative about them? Is there unresolved abuse that they can’t communicate? Are they scared about something? Is there something like OCD bothering them? For instance, I hate adhesive. Stickers and tape is everywhere. When I couldn’t say my own words, I couldn’t tell everyone why I was melting down or running away. Because I was afraid of stickers and they were everywhere. What about a low-pitched hum that is hurting my ears? Now I can say something, and I have the motor skills to cover my ears. What about a kid that is banging their head because of the sound no one else can hear? Are they aggressive, or doing exactly what anyone would do in their position?
Meg:
So, starting by looking for medical issues, pain, something that might be happening, and then becoming curious about what else might be going on for that child, not using this lens of, “Oh, they’re doing it for attention or to get out of something,” which is very much a neurotypical behaviorist lens that we’re imposing and is probably usually wrong. But instead, becoming curious about what might be happening in that child’s experience. And I also hear you saying how important it is for us to provide access to things like robust AAC, so that we can eventually learn from that child about what’s happening in their experience.
That also ties back into something that has been coming up in these conversations a lot, that eliminating the behavior is often teaching our autistic kids to act like things are fine, when in fact, they aren’t. And you’re nodding at that, that they’re still having that experience of trauma or pain, and we’re just teaching them, please don’t show that to us because that’s uncomfortable. And that’s not what we want to be doing. So, we don’t want to be looking at behaviors and eliminating behaviors. We want to try to understand and support our kids to not be traumatized by daily life, to actually feel safe as much as possible in their environments. TJ, if there’s one shift you’d like to see in therapy practices or one takeaway from our talk today, what do you hope that would be?
Tiffany:
Always assume and treat students like they can hear and understand, and that their bodies are just not able to show understanding or listening.
Meg:
Thank you. We can’t hear that enough. And you know, even as we’re hearing it, I know that I think of all the times that I haven’t done that well. And I imagine that’s the same for a lot of listeners. So, I really appreciate you reminding us to presume competence to assume that our clients — especially if they’re not speaking — can still understand us, they are listening, and be thoughtful around that. What are you working on now? And where can we find you online?
Tiffany:
So, you can find me on Instagram at @Nigh.Functioning.Autism, and that’s the same for on TikTok, and Facebook, and YouTube at Nigh Functioning Autism. And I have a website, Nigh Functioning — www.nighfunctioningautism.com. And right now, I’m really trying to work on like, adaptive and assistive technologies. So, my, the Masters I couldn’t finish because of epilepsy was in biotechnology. And my goal is to try to get mixed reality, like virtual reality, augmented reality, and, you know, reality; see how that can help with those body movement issues that we were talking about, even communication.
Meg:
That is so interesting, and I’ll definitely link to all of your social media sites on the show notes. Thank you so much for talking to me today.
Tiffany:
Thank you.
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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.
