Speech therapy experience as a stutterer [FAQ]
“What was your experience as a person who stutters in speech therapy, and what do you wish was different?”
I'm on the 2023 International Stuttering Awareness Day panel for "Ask a PWS" - these questions came up, and it sure is asked a lot... so I thought I’d share my answer here as well. You can ask questions up until ISAD, Oct 22, so go ask the panel!
I really had a mixed bag of experiences…
I was in speech therapy as early as 3-4 years old because I couldn’t pronounce my R-sound (and had a backward or reverse swallow, according to the notes). I was about 6 years old - in first grade- when the stuttering began.
Most of this information I’m going to tell you is going to come from what my mom has told me, and/or my very fuzzy memories….
According to my mom, the speech therapist I had been seeing for the Rs was NOT knowledgeable in stuttering. My extremely outgoing personality suddenly closed up and shut down, and I spoke less and less as speech therapy continued. My mom took me out, upset but trusting her gut.
We weren’t in the public school system. There are programs that let private school kids, like little me, see a speech therapist with the school district. But I only qualified for 1 visit every 2 months. So instead, my mom went to the medical insurance and fought for coverage and a referral. This was 1997 in California, for context.
Wins:
Once it was approved, I began working with SLPs who did seem to know more about stuttering. Memories are very fuzzy, but I didn’t love or hate speech therapy too much. My notes show that the SLPs recommended community groups and various other resources. (Good! Even if we didn’t do it.)
I also remember being told not to avoid certain sounds because stuttering was variable, so I’d likely eventually stutter on those too. (Good! This seems to shape my perspective on avoidance. While I still avoided at times, I never used fake names or ordered food I didn’t want.)
I remember trying delayed audio feedback and HATED it. You can read more about that experience here - but my grandma pushed for me to try again. The SLPs asked me, I refused loudly, and they told my grandma they couldn’t force me. (VERY GOOD! Agency.)
They educated my mom very well (GOOD!) but I have no idea how much they educated my grandma, who was helping raise me as well. They may have tried. I can’t rate them on that lmao. My mom was told it was not her fault nor my fault (YAY) and not to use the ‘techniques’ from speech therapy at home unless I asked (YAY), and not to tell me to slow down or critique the stutter (YAY). They told her to encourage me to talk all I want, however it comes out. — This may have been the best thing they did. Home was therefore a safe space for me where I was not obsessed with “Will I stutter or not?”
Less great
I know that I was told it was ok to stutter, but I don’t remember ever feeling that way. After all, I was still in speech therapy. I was still trying to practice away my stutter, right?
I remember informing an SLP that I did not like the fluency technique she was having me practice. (Which, to be fair, kudos that I was comfortable enough to say that.) I told her I didn’t like the way I sounded. She seemed thrown off, and had me finish the practice anyway, and practicing it a few more times, saying I could decide that when I was done. (I don’t think she knew what to do with that information or feedback. She didn’t dive into my ‘why’ at all - which may have been a missed opportunity.)
I had absolutely no idea why we were doing breathing work. I thought it was to relax my muscles so I didn’t stutter. Not, perhaps, to just relax for my own sake. “Relaxed stuttering” was not something I remember learning as possible.
When I was told my stutter was improving, I was always, always resentful. Because this wasn’t true outside of the therapy room, or if it was, I knew I’d be stuttering again come the new school year. Stuttering is variable - someone drilled that into me (which was good), but it felt frustrating that other SLPs praised what was really just a variable and random thing.
I did not understand the WHY behind the ‘techniques’. I assumed all of it was to get me to stop stuttering. And that they were tools I need to practice ‘all the time’ and if I stuttered, then I messed up. This was not explicitly said to me. I just didn’t understand why else we would be doing these weird things unless it was to make other people happy when I hid my stutter.
I attended public HS and saw the school SLP then. Unfortunately, she was not interested in even having me as a caseload, if I remember right. My notes from her IEPs contain fluency goals like “achieve 95% fluency in a 5-minute conversation”. This goal was consistently marked as “improving, but not there yet”. I remember feeling like it was a joke. Once again, I was praised on decreased stuttering in the therapy room. It made me want to rip my hair out. (Remember, I’m a teenager in this story, unlike the others. LOL)
After high school, I was glad to be done with speech therapy because, and I quote, “I’m tired of disappointing people.”
Oof.
That’s the reason behind one of my quotes, “If speech therapy left you feeling like a disappointment, it failed YOU. Not the other way around.”
Some more thoughts…
I went back to speech therapy as an adult, after finding the stuttering community. I was still angry at SLPs. But I got lucky - really lucky. The SLP I saw met me where I was at. We briefly went over these fluency-modifying techniques. “These are for you to use if you’re in a situation where you’re stuck and you need out. It gives you an option to try.” — this blew my mind. Until then, I hadn’t even been aware there existed a world where I could think anything other than ‘get it out get it out get it out get it out GO GO GO’ ran through my brain mid-stutter.
I had no idea someone could make a conscious decision during a stutter. This turns modifying speech into ‘you have to practice this so much that it is an automatic reaction. you have to do it so much because you won’t think about it.’ — No one had ever explained that to me, or if they had, not in a way I understood.
Checking in with me - often - and making sure I actually understood why we were doing what we were doing, and when it was useful to use it, likely would have helped.
The SLP I saw as an adult spent less than 2 sessions with me on ‘techniques’ because she said it seemed like I wasn’t interested in having them as anything other than a grave backup plan. Instead, we spoke about my feelings, and the things I was avoiding, and the way I wasn’t sure I could live the life I wanted to. That was what I needed. We only had a few sessions, but it helped me let go of a lot of the anger I was still holding onto.