74 Why AAC is better than Speech – with Tiffany Joseph (Autistic Voices)

Listen On

Disclaimer: The information in this Podcast is for educational purposes only. Vaishnavi Sarathy, Ph.D. is an educator, not a doctor, specifically not your child’s doctor. Please consult your physician before implementing any supplement or diet recommendations.

Audio Transcription:

Vaish:

Why isn’t augmentative and alternative communication is better than speech is what we’re going to learn about in this podcast.

Hi, I’m Vaish chemistry and functional nutrition consultant and science educator, as mom to a point where Down syndrome and autism who happens to be nonspeaking was just a few years ago that I felt helpless at what appeared to be SIDS dysregulation, severe gut issues, apparent lack of communication, extremely low energy and disinterested in anything I offered.

Since then Sid, and I have traveled through 1000s of lessons learned about the gut, the brain, the gut, brain axis. And the real importance of presuming competence said now lives a motivated, regulated life filled in his words with gory ambition, and it is my mission to make sure that this regulation is accessible to all.

I present this podcast functional nutrition and learning for kids in order to bring to you the lessons that have changed my life. Now a good place to start if you are new is to check out my free eBook at functionalnutritionforkids.com/learning. It has six learning hacks that you’ve likely not encountered before.

On to today’s guest who is about to expand your mind. Today’s guest is Tiffany. Tiffany is 40 years old and a parent to three neurodivergent children. The two oldest are diagnosed with autism and ADHD. her youngest has a sensory processing disorder and ADHD. She is currently a single parent, Tiffany was diagnosed with ADHD and auditory processing disorder as a child and Asperger’s at age 19. And again, with autism in our 30s, as well as epilepsy, she found out she’d had seizures since she was a child.

That lady’s diagnosis is what led to her oldest son’s autism being discovered. And then later, her daughter, this interview is a treat, you get to hear Tiffany’s thoughts as she spells them through an AC device. And it’s mind opening and it’s a must for parents of kids who are minimally or unreliably speaking.

I Tiffany, welcome to functional nutrition for kids. I’m really excited to be interviewing you because I’ve been following you stalking you on Instagram for a long time. And I really love your field, your your feed, it’s it’s so authentic, and it’s and you’re one of the, you know, lone voices, maybe not lone voices, but when you one of the strong voices of ASC support on social media. So thank you.

Tiffany Joseph:

Thank you.

Vaish:

So it’s my pleasure to interview Tiffany today, but I’m going to start with an AC question. I’ve heard so many interesting things about AC from your Instagram feed, what role has AC played in your life.

Tiffany Joseph:

In the beginning, before I knew it was a form of ASD, learning to spell and thus communicate, actually taught my brain how to speak. It somehow opened a channel of communication I didn’t have before. I was in love with words and letters, and could read very early. But most of my speech was repeating what I heard from others.

Once I learned to manipulate the letters to form words, I could also figure out how to pronounce the letters and words together to form words, and then my own spontaneous sentences. I started with air writing, and eventually was able to see my own words in my head. Still, to this day, I have to see the words in my head to say them properly. As an adult, who has been through many traumatic moments, I needed to be able to speak in talk therapy and couldn’t. In fact, forming words around feelings and emotions still doesn’t work spontaneously.

Mike current therapist, who also was a therapist, for autistic children, had me write my feelings out to be able to do our sessions. Since then, I have felt powerful actually being able to talk about my feelings, even though it is through text or email, even when we are in person. It taught me that I don’t have to speak for my feelings to be important and that my feelings do matter.

Vaish:

Thank you. So you brought in two really important ideas. One is the enormous importance of communication regardless of speech or not, but also that you don’t have to communicate in order for your feelings to be important. So thank you for bringing that side to regardless of whether you communicate by AC by speech or not at all, at least in with as far as people can tell. Not at all. Your feelings are important and i’m so encouraged that you found a therapist that you know that you We’re able to work with and you liked. And in that context, have people in your life teachers, parents, friends, therapists, co-workers, have they respected your AC and your speech preferences? How has that journey been like,

Tiffany Joseph:

Really having no problems with friends and most family They want to finally hear my thoughts and feelings. And that gathers that they love that I can now my ex-husband is a different story, and thinks, what I mistakenly thought before that my words only matters spoken. And if I can speak about mundane things, then I should be able to make my mouth work for everything.

Vaish:

And that, yeah, that is a common misconception. And I actually just heard, of a respected researcher saying that about minimally speaking kids that can use their words to say repetitive language but are not able to, but they prefer spelling, in this particular case, letterboard to express complex ideas. And they were saying the same thing that if you can say one thing, you can say everything, which is the most absurd thing I’ve ever heard, how has this how has AC? And because you have used AC, and you’re an advocate for men, therefore, you’re also an expert at it. how is this positively affected your parenting? How has this affected your parenting in general, maybe?

Tiffany Joseph:

Well, now, since I don’t have to stress about using my mouse to communicate, which is very exhausting at times, and sometimes impossible after seizures, I have way more energy conserved to connect with my kids. When I can’t form math words, I still have a way to talk. And AC can be visual. So it helps the brain does neurodivergent children to automatically have a visual. One of my children is dyslexic. And finally, getting a speech-generating app has been a game-changer for both of us. Because writing and reading is hard for them. But my most effective method of communication, now I can tell you what I need, and it is read out to them along with my other dyslexic family members, which means we can both use our best forms of communication together.

Vaish:

You are unique in that you you’re artistic, and you’re a mom of your mom of autistic children as well. So I would love to get parenting advice from us. If you have to give other parents with autistic kids may perhaps they have minimal speech or reduced speech or nonspeaking what are the three most important things you’d like to share with them? I asked because a lot of parents want to postpone AC because they’re afraid that speech will be delayed if they only rely on A’s and some parents don’t even believe AC as you know, so. So what what is your advice for parents?

Tiffany Joseph:

I cannot stress enough how important modeling is for families. The more modeling the sooner to proficiency. situations they see models, the wider range of communication, they will understand and have at their disposal. It doesn’t matter if it is with a speech-generating device or app with Facilitated Communication, etc. I think nothing is better than seeing the people around us use the same methods as we do to communicate with others. Next would be to start modeling as early as possible. It’s not fair that speaking kids are immersed in speech, but AC users only get a few sessions a month.

The more the student sees the communication methods used around them, the more time is taken off the learning curve to proficiency. Next is that AC and other methods of communication can open up speech channels like it did for me. Speech isn’t the end goal. Communication in its fullest degree is the end goal. But some people may indeed need other communication methods to open up speech.

Vaish:

So well said especially I am going to make I think like this is the highlight for me is what you said is that it’s not fair that children who speak are immersed in speech we make such a big deal of immersion of language immersion.

If you’re going to learn Chinese go immerse yourself in that land. Particular learning AC? Yeah, one session a week, okay. And if you’re learning some, you know, a different array or technique, then maybe that’s a session a month because you don’t have a provider in the area. So, yeah. So thank you for saying that you said that. I am paraphrasing here. But I think you said that speech is not the final goal.

Right? That is, so that brings me to my next question. Because parents and therapists are so enamored with speech, right? So speech is like the holy grail, and they want to stay away from a C, even when speech is not functional, right? So we know, we all know a lot of kids, whose speech is not functional. And I can only imagine how much is in their brains that’s not coming out. And they’re just saying this motor loop over and over again. And do you think speech is secondary to AC? When it comes to communicating complex thoughts specifically?

Tiffany Joseph:

Speech is not the goal. It’s not easy. It requires proper breath, muscle ability, processing ability, etc. Why should someone has to work to meet other people’s standards, this communication just because that’s what they expect? Why should I struggle just to convey something I can do so in other ways that are easier and more efficient for me. People say using AC as a crutch. I don’t get that because crutches are good. They help people walk who would struggle otherwise, AC shouldn’t be considered a backup to speech. speech is my backup to AC. My words formed on my lips are not always accurate, or what I mean to say my real words come from written form. And I don’t have to worry about my mouth betraying me and causing confusion or anger and others.

Vaish:

In my heart, so full hearing that speech is your backup to AC This is so important for everyone to hear that it doesn’t have to be the goal that everybody’s it’s it’s not the finality of communication or anything like that. And you mentioned three or four things that are involved in speech and I. But one of them is bread, and perhaps one of them is posture.

They’re smarter, they’re so much more. And often kids have problems with my son cannot breathe in and out voluntarily. He has motor issues. So what’s the point right when he can easily communicate complex thoughts through AC? So thank you so many rich thoughts. And finally, I want to ask this question coming back to parents, because in a free world where there are no schools and no IPS, and everything is ideal, perhaps there’s a little bit more freedom, maybe. But when we’re navigating IPS and schools, they use speech to diagnose cognitive ability, at least I’m pretty sure this is true for most school districts, but our school district here, they have four levels of classrooms in disability and in decreasing order of academic.

What do you call that progress, and it goes by speech. So if you can’t speak, you get placed in the lowest level. And if you can speak fluently, you get placed, you get taught academics, and you can prove yourself that you’re worthy of academics. So really sad. So what advice would you give parents when they’re navigating IEPs, and schools.

Tiffany Joseph:

Insurance that whatever format is AC is received or used is robust. Meaning the student can communicate fully and not simply every person in that student’s life from parents, extended family, teachers, therapists, etc. You need to make sure they all understand and believe that every single person on this planet can learn to read and communicate and deserves to have people in their lives that will not accept anything less than that. Every human can read and communicate no matter how you feel their degree of severity of the disability is. Without that, I wouldn’t trust anyone to make the right decision for my child. speech is also a physical thing. If I can’t speak, that is a physical disability. It has nothing to do with thinking.

We need to set this paradigm down that injured or disabled people have less cognitive ability than others. We cannot judge intellectual ability or depth of thought based on speech or mannerisms. Bodies don’t always or first Some people never obey the mind they’re attached to doesn’t mean the mind is missing.

Vaish:

100% I’m with you, 100%, and thank you for sharing these thoughts. And I hope that my biggest goal with this particular episode that we’re recording right now is for parents that are stuck in the paradigm that you talked about that disability means intellectual delay or intellectual issues with thinking cognitive issues and so on. Be that speech is the holy grail, right that is that see, like you said, as a crutch.

I love what you said, What’s wrong with a crutch? I’ve never heard that line before. So I because I’ve always tried to talk to people. No, it’s not a crutch, but you’re right, if it’s a crutch so what its crutches are fine, you need crutches right? Sometimes.

Thank you so much for being with us and sharing your views. Tiffany and Tiffany can be found at Instagram at NIH functioning autism and it’s my dog functioning dot autism and HGH dot functioning dot autism. And I highly recommend you follow her on Instagram for really out-of-the-box insights on AC that you’re getting directly from a person who’s a using AC and is also parenting and using AC as a parent.  So thank you.

Tiffany Joseph:

Thank you.

Vaish:

Thank you for listening. I’m sure you have many things you want to try with AC right away for your child. Signing off. I’m your host