How well do SLPs understand the lived experiences of PWS?

Hello everyone, my name is Karla Canizalez. After reading and listening to many of PWS experiences, I was wondering- to what extent do you feel your speech therapists have understood your lived experience as a PWS? Has an SLP ever done something for you with the intent of being helpful but has actually hurt you instead? As a future SLP, I think it’s important to understand the degree to which SLPs and PWS are or aren’t on the same page. 

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How well do SLPs understand the lived experiences of PWS? — 2 Comments

  1. I don’t think someone who does not stutter can fully appreciate the experience of stuttering.

    Yes, we all feel embarrassed if we fall and people laugh, yes we might feel ashamed if we don’t have the latest and greatest sneakers like everyone else, yes, it may be hurtful for kids to tease kids who wear glasses by calling them “four eyes”. These are often “one-time” feelings.

    But the shame, embarrassment and hurt that one feels from stuttering is not just a “one and done”. Many of us have cultivated shame, fear and self-loathing for years.

    Reading from texts and listening to lectures from professors do not adequately illustrate the great pain that stuttering causes for so many people.

    A clinician can be respectful and empathetic when listening to a client who stutters, but I’m not sure about understanding lived experience when one doesn’t walk in those shoes.

    There is no comparison here, but I cannot begin to imagine what it must be like to be deaf or blind. I don’t live that experience. The most I could do is demonstrate respect for that person’s experience and not pretend I know what it’s like. Honesty and transparency are vital to sound relationships.


  2. Thank you for the interesting questions you have posed.
    I have experienced many speech therapy programs and clinicians over the years, along with many different therapeutic approaches. By my count, I have seen about 35 different therapists for my speech! Most were not very helpful (although no SLP did me harm). I count about seven clinicians who I received significant help from – and of those, I received substantial help from three.

    Two of my SLP’s over the years also stuttered, so they knew exactly what stuttering was like from their own personal experiences. They both helped me quite a bit.
    But I also experienced some excellent fluent SLP’s. Though they never experienced stuttering themselves, they had immersed themselves thoroughly in the feelings, attitudes, and perspectives of people who stutter. Combining this with their academic knowledge and clinical experience, they could provide therapy as effectively as another person who stutters. It IS possible for a fluent clinician to acquire a really deep understanding of stuttering and people who stutter, but there are too few of these clinicians around. In my experience they are indeed rare in the speech pathology profession. Fluent clinicians can only gain this deep understanding by talking with many people who stutter, and preferably meeting them personally at large national or international gatherings of people who stutter, spending time listening to their stories.

    From my many experiences with SLP’s, I can offer some advice when dealing with people who stutter, to increase the bond with PWS, gain their trust, and to be a highly effective clinician respected by those who stutter:

    – Know what is possible and feasible, and do not overburden a person who stutters. Progress can be made in small steps, and it is unlikely that a great deal of progress can be attained quickly. Appropriately praise progress, but progress may not be a rising sharp line.
    – Relapses are NORMAL in the treatment of people who stutter. They are to be regarded as natural and expected. (I have studied speech-language pathology myself, and I’m aware that many other speech/language disorders can be treated without expecting occasional major relapses in the client. Stuttering is different.)
    It is very normal in therapy for stuttering for clients to have a zigzag line of progress – two steps up, one step back, two steps up, one step back, etc.
    When relapses occur – as they almost inevitably will – it is VERY important NOT to blame the client in any way. The relapse did not happen because the client was not following a clinician’s instructions carefully enough. The relapse did not happen because he or she did not practice enough, or was not trying hard enough, or was not committed or dedicated enough to the effort. It is SO essential to understand that occasional relapses are a natural part of the road to progress in stuttering therapy. Clinicians need to empathize and understand the nature of relapses, and skillfully and sensitively help clients to get back on track. Blaming clients for relapses is a quick way to erode trust in the clinician-client relationship. In my experience – and in the experiences of many others who stutter who I have personally known – being blamed by a clinician for a relapse results in very negative views of that clinician. And people who stutter would then often tell others who stutter to avoid that particular clinician. So this is really important!
    – It’s important to be patient. A client who stutters may not meet all the goals that a clinician sets, as quickly as a clinician might expect and hope. Patience is needed. It is not the client’s fault if these expectations are not achieved in the time frame hoped for.
    – Clients need praise for what they achieve. They need to be encouraged with sensitivity and understanding. If larger goals appear out of reach for the time being, be satisfied with smaller goals. Talk with a client, and fully understand his or her needs, and what his or her therapeutic goals and expectations are. It’s important not to convey disappointment. Always maintain a positive and cheerful tone. It’s important to spontaneously modify planned therapeutic approaches to meet the challenges and circumstances at hand.