Introduction: A Speller’s POV
Therapists are my heroes — they transform problems into paths toward the future you want to build. I was scared to start. My psychiatrist told me that meds alone would not solve my anxiety, and she encouraged me to give therapy a try.
Dreams make work, and sometimes you need help getting started. That’s where I was when I started therapy. I wanted to build an adult life outside of my family, but I was afraid of so many things: not having a Communication & Regulation Partner (CRP) who knows how to help me stay regulated, not being able to manage my migraines, not finding support from professionals who believe I am capable. Most of all, I was afraid of being judged and found lacking because of my long struggle to convince my school district that I am worthy of education.
Therapy opened doors for me when I was stuck. I think having my inability to speak NOT be a barrier is so important for other therapists to understand. I hope more nonspeakers will give it a try, and more therapists will be willing to take us on as patients.
How It Started
Dr. Ghaffari’s POV (treating psychiatrist): Alex and I started working together in 2017 when he was referred to me by a colleague to evaluate his medication regimen. At the time, he was happy and doing well in high school. He had just started using spelling to communicate with his mom as his CRP. It was a hopeful time for him and his family as he found his voice. His increasing ability to communicate was associated with decreasing anxiety and an increasing ability to self-regulate, so our goal was to slowly taper him off medications he had taken for many years to help him self-regulate. During this time, Alex and his family were also advocating for access to a CRP at school.
Unfortunately, his school district did not recognize spelling to communicate (S2C) as a valid intervention and refused to include it in his individualized educational plan. This led to a protracted legal battle with the school district, which demoralized Alex and invalidated his sense of agency. By 2018, Alex was struggling with extreme anxiety resulting in bouts of dysregulation that led to aggression towards his family. With aggression came a lot of shame, and Alex grew even more anxious about his ability to control himself. Instead of lowering doses, we were now escalating doses of existing medications and trying new medications to reduce and control his anxiety. The goal was to disrupt the cycle of anxiety, aggression, and shame.
Alex was the first person in my practice who used spelling to communicate. I quickly became aware that I needed to adjust the flow of our conversations. I had to be more patient and mindful of the tempo of my questions. I had to make sure Alex had time to respond without me speaking over him as he spelled. I was thrilled that he had found a way to express his feelings, and I did not perceive his form of communication as a barrier to treatment.
Alex was like any other teenager; he was working on self-awareness and how to recognize his own emotional patterns and responses. It became clear to me that, like most others struggling with anxiety, Alex needed to work with a skilled therapist who could help him through this process. Furthermore, like many others suffering with anxiety, medications alone would not be the answer for Alex. He could not tolerate many of the medications traditionally used to treat anxiety. The medications he tolerated were not as effective in him as in individuals without autism. Research has consistently shown that the combination of medication and therapy is the most effective strategy for managing anxiety. Alex has autism and he spells to communicate, but he is also an individual with severe anxiety. His anxiety was causing suffering and at times left him feeling hopeless. He needed to develop concrete skills and behavioral strategies if we were to have any success managing his anxiety. We needed a multi-pronged approach to make his anxiety manageable, so I referred him to Dr. Beth Rosenwasser for Cognitive Behavioral Therapy (CBT).
Dr. Rosenwasser’s POV (behavior therapist): Dr. Ghaffari and I have worked together for over a decade with a number of children and young adults having challenges that many on the autism spectrum experience. So when she called to refer Alex for help working on his depression, anxiety, and social isolation, as well as sharing his and his family’s strengths — including his being bright and articulate, and his positive close relationship with his mother and grandparents — I wasn’t concerned about his mode of communication. When we discussed his using S2C, I had some trepidation because of several documented instances of false communication through “Facilitated Communication.” Dr. Ghaffari shared that she believes that his communication is his own. I met for an initial consultation with Alex (and his mother, as his CRP, sat to the side) and saw that his letterboard is made of clear velum so that one could see both his eye gaze, his pointing to each letter, and his mother’s hand holding the board (but not his hand) with no obvious prompting. The speed and coordination of Alex’s eye gaze and tapping each letter were convincing to me, coupled with a lack of any obvious prompting by his mother, that his communication is his own. The fact that two other physicians with whom I have worked on multiple occasions also experienced Alex’s communication as authentically his own was further convincing.
Building the Therapy Relationship
Alex’s POV: “Hi Beth. Might need to end early today.” That’s what I opened with the first time I tried to spell through a migraine. She replied, “You tell me when.” That sealed the deal for me. She adapted to me, she didn’t try to impose any methods or approaches.
She asked great questions and really listened to my answers, even when they took a long time to spell out. It’s refreshing to have someone want to get to know you as a whole person and not just a collection of diagnoses and problems.
She also shared experiences from her own life, which made me realize that some of my struggles are because I am human, not because I am autistic. We also share a love of poetry and sometimes exchange poems to help express our feelings. Our relationship feels welcoming and not clinical, though I know I am her patient. The contrast between how she treats me versus how I am often treated by (even well-meaning) adults in professional settings makes me emotional. It makes me emotional now because I realize it is still too rare. Even at the hospital — for migraines — where people are kind, I still feel like they “dumb things down” for me or just don’t have the patience to wait while I spell.
Dr. Rosenwasser’s POV: Through my work in clinical program development, I had become familiar with another speller involved in self-advocacy through the Spellers and Allies Advocacy Network, which works to educate healthcare professionals. I had read and shared their materials with others. This is a valuable starting point for any provider.
My efforts to connect with Alex are, at their core, the same as those I have made with every client I have worked with throughout my career. I seek to understand each person’s or family’s language, values, and goals, and to meet them on their own terms. I often think of the words of a colleague, who said that to be a clinician, you have to “enjoy watching flowers grow.” Grounded in that relationship and genuine care, I then develop a behavioral understanding of what is happening and engage the empirically based tools of my training to help clients move toward their goals.
Each client is different, and autistic clients vary widely in emotional processing and expression. Alex is a highly empathic and sensitive man. At times, I offer a poem as a way of reflecting what I imagine he may be feeling. We thereby discovered a shared love of poetry. We continue to use literature as a way to share, feel understood, and help Alex connect his own experiences with those of others. Poetry and literature can remind us that we are not alone and introduce people to a range of feelings and ideas. As one small example, when Alex’s grandfather, with whom he is close, was ill, I shared a poem wherein a woman recalls her relationship with her deceased grandmother, focused on how we embody the people who touch us. Alex added, “how their love touches us and makes us stronger… it will be hard when Poppas leaves us.” This helped us to talk about the scary topic of illness and loss.
Therapy with a Nonspeaking Client Is Both the Same As and Different from Therapy with a Speaking Client: Reflections and Practical Considerations
General information: It is first important to say a few words about the role of the CRP. The CRP is not a participant in the bilateral communication and should not jump in. This would be more obvious if it were a staff assisting with mobility but when the CRP is a relative, they will also have feelings about what is being communicated and might have a tendency to jump in or even speak for the client (similar to what happens in family therapy with all speaker participants). The clinician is responsible to be clear to keep the boundary, in a kind and firm manner. There are times when there is a question where it is helpful for the CRP to respond: for scheduling or help with following up on an agreed-upon clinical goal, but the client should be the one to spell during the session to ask their CRP to respond to the question. If the role of the therapist is to have the parent participate in a family session, then that needs the permission of the client as well as the parent and should be clearly different than individual therapy.
Therapy is the same as with a speaking individual in that the relationship, or “working alliance,” is a necessary but not sufficient condition for effective goal achievement. The second commonality is the need to use empirically supported case conceptualization as well as strategies to co-develop with the client. Providing a rationale, skills, and alternatives is a part of all ethical, effective mental health work.
There are also differences. Some are clear assets, some neutral, and others are challenges to clinical psychotherapy. One asset is that spelling slows down communication. This allows me as the clinician to be more thoughtful and organized about each next statement. Interestingly, this has positively influenced my work with speaking clients because I slow down and pause more to see if my next statement is the best response for the purpose of the therapy goals.
On the other hand, this slowness can make me concerned that I may be missing some critical background information; because it takes longer for a speller to share that background or check on it, we are both making decisions about what background is needed to make good clinical progress in the session time allotted. All clinicians sometimes wish they had more time or more details; it is just more of a challenge when communication is slower.
In addition, facial and body expressions as well as tone are usually important indicators of emotions regarding the conversation at hand; with those having apraxia and using AAC, that “information” is missing. The use of a see-through velum board is especially helpful, as I can see the spelling and Alex’s facial and body gestures and can also read much of what he spells myself. There can be additional random utterances, sounds, and facial expressions that are not related to intended communication. Clinicians need to check in with the client to ask if there is a meaning. For example, if Alex is unusually stimming and making vocal sounds, I will ask if it is related to the session content or something in his environment. It could be a challenge with sleep, which might lead us to talk about strategies or a recommendation to check in with Dr. Ghaffari about his medications. Or it may be that he is upset about the topic at hand, and I will know to titrate the approach and encourage use of calming tools or a break.
Alex’s POV: I didn’t believe I could learn so much about myself through someone else’s eyes. Writing this article with Beth, I was excited to learn that working with me has changed her approach to working with speaking clients. I was a bit overwhelmed when she shared that because my secret dream is that including nonspeakers is not just a kindness to us, but good for everyone.
Regarding the slowness of spelling as compared to vocal speech, one benefit of spelling is that I must be thoughtful ahead of speaking so as to not say hurtful or angry things — it appears to me that it takes speakers a lot of effort to stop oneself when speech is so easily accessed. I feel lucky in this particular way because I can be impulsive, and spelling leads me to think ahead.
Regarding my mom as my CRP for therapy, I am glad that mom hears my thoughts but never asks for more. Her silence is a different kind of gift. I like that we are working together to find workarounds to challenges, like when mom mutes my zoom while I am verbally stimming while Beth is talking so that I can hear Beth (zoom mutes when two people sound off at the same time).
Finally, for my non-speaking peers considering therapy, ask yourself the following questions regarding your readiness:
- Do you have a CRP you trust with your deepest thoughts and emotions?
- Do you think you can stay regulated through hard discussions?
- Do YOU really want to do this, or are you being pushed?
Conclusion
Autistic people experience more complex health needs, greater healthcare utilization, and more unmet healthcare needs than peers with and without disabilities, including high rates of co-occurring mental health conditions and persistent gaps in mental health care (Rast et al., 2021). Talk therapy is well-established as an effective, low-risk intervention for people suffering from conditions such as anxiety and depression. People who use AAC, including fluent, open spellers with these and similar conditions, can benefit from psychotherapy, and their mode of communication should not be a barrier to them accessing it.
Alex Le Pape is a nonspeaking autistic self-advocate. Beth Rosenwasser, PhD, practices Cognitive and Behavior Therapy and Consultation in private practice. Dr. Manely Ghaffari is a Child and Adolescent Psychiatrist in private practice.
References
Rast, J. E., Garfield, T., Roux, A. M., Koffer Miller, K. H., Hund, L. M., Tao, S., Kerns, C. M., Rosenau, K. A., Hotez, E., Anderson, K. A., Shattuck, P. T., & Shea, L. L. (2021). National Autism Indicators Report: Mental Health. Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University. National Autism Indicators Report: Mental Health (PDF)
