Spelled Communication: Insights and Access
Explore methods of communication that utilize letter boards or keyboards to spell intended messages. Local & regional resources will be shared.
Presenter: Michelle Lubetsky, M.Ed., BCBA
Lubetsky Consulting, LLC
Oct 16, 2024
6:30 PM
This is a free workshop. Register on Zoom
We are glad to share that Autism Connection of Pennsylvania has been granted the opportunity to further our mission of being a lifeline and hub for families and adults in the autism community. With heartfelt gratitude, we announce that we have been awarded a grant of $10,000 by the Child Health Association of Sewickley.
We believe in leaving no member of our community behind. Our organization is disability-led, with a passionate team that includes three autistic board members, and 33% of our staff is autistic. We serve people and families from infancy through older adulthood, with a goal that
everyone receives the support, information, and advocacy they deserve.
This grant is a testament to our commitment to inclusivity and accessibility. With these funds, we will embark on a project aimed at supporting people who are nonspeaking or minimally verbal, hoping to help them communicate their needs and wants—often for the first time.
Here’s a glimpse of what this project entails.
This project aligns with our core values of inclusivity, accessibility, and support. We are dedicated to making a tangible difference in the lives of nonspeaking autistic people and their families, ensuring that communication barriers do not hinder their access to healthcare, education, and social engagement. Together, we can break down barriers and create a more inclusive world for people with autism who need access to communication.
Thank you for being a part of our journey.
The double empathy problem posits that difficulties in social interaction are not solely the responsibility of the autistic person, but also result from a lack of understanding and empathy from people who are not autistic.
Explaining the double empathy problem poses its own challenges, so I’m quite literally illustrating the concept with a question: Who will do the laundry?
Autistic grief is authentic, deeply felt, almost tangible. And it can manifest in a way that can be baffling to non-autistics. We have seen this when someone on the spectrum receives news of the loss of a parent or caretaker. “Who will do the laundry?” is a type of question a person on the spectrum may ask. It can seem pragmatic, almost unfeeling, but it is a distilled expression of grief concentrated into an overwhelming question.
Difficult to explain, so I’ll illustrate.
Years ago, a close friend who is not on the autism spectrum talked about the loss of his mother to breast cancer when he was 11 years old. Her death was an abrupt devastation. When he spoke about the experience, he formed descriptions of being snuck into her hospital room for brief visits, and even with her deteriorating state, he thought that she would eventually come home.
She never did. But the feeling of her possibly returning lingered. “I remember the moment I truly understood that she wasn’t coming back. I went to the basement to find my father standing next to piles of laundry. His head was bent. He was sobbing. And I knew that I would never see her again.”
Who will do the laundry?
This is how the question Who will do the laundry? feels.
Who will do the laundry? is an expression of grief concentrated into a plea that really captures the questions, “What is life without them? How do I go on?”. When an autistic person demonstrates grief in this concrete form, a non-autistic person may perceive a lack of empathy. In turn, the autistic mourner may feel that others have no empathy for their despair, depending on their reaction to the overwhelming question.
My friend’s description of the laundry room scene illustrates his father deeply grieving with echoes of Who will do the laundry? quietly implied. In both cases, it’s not about the laundry. It is about the loss.
Tammi Morton, Director of Operations
When my son was 4 years old and had no verbal words, I knew we needed to find a communication method that worked for him. Getting over the barriers to access AAC (Augmentative and Alternative Communication) didn’t come fast or easy, but because we were unrelenting in the belief that he had the right to communicate, we are here.
So where are we? Well, he – and we – are on the second day of the new adventure of middle school. Yes, middle school. A lot has certainly changed since the acronym AT (assistive technology) became part of our vocabulary. My son has matured and grown almost as fast as the technology has.
Text leveling apps modify the text to be simpler to fit a student’s reading/comprehension skills while allowing them to access the same content as other students:
The information above is courtesy of a report shared with us after a new AT Consult was done with a consultant from our IU (Intermediate Unit) who is a part of the TaC (training and consultation) Team.
You can find your Intermediate Unit by visiting the PA Intermediate Unit (PAIU) website.
Please remember, these are examples that were identified for my son to trial. AT and AAC should be person-centered to meet the needs of each student, and that includes having time to trial options, not just forcing options. Conversations about this should be ongoing, as students and technology change, it’s important to review and revise. Students should also be a part of these conversations.
Technology is so helpful to all of us, I hope this piqued your interest in exploring what is out there.
Melissa Skiffen, Disability and Family Support Advocate
While waiting for the coffee to finish brewing in the office kitchenette, my eyes fixated on the stream of coffee entering the carafe and the tranquil sounds it made in anticipation of the final surge of steam as the brewing finished. This concentrated focus drowned out a number of elements that flooded the surroundings, flickering lights, multiple distant voices, phones ringing, and the general energy of movement within the maze of cubicles.
During the reverie, I saw a peripheral figure approaching to my left, and a soft, clear voice flowed into my ears, “Good morning! How are you?” and at that moment, I straightened and turned my entire torso toward the person asking the question, stopping like a machine that produced speech. I heard my own voice say, “I am bereft of coffee.” And all memory of the moments following would never gel in my mind because I could only fixate on my social ineptitude.
Bereft of coffee. Who says that? Did you even make eye contact?
Bereft is not a word used often in everyday conversation. It’s a complex, haunting word that comes from bereave, a term of loss and mourning that communicates that something is lacking.
Yes. I looked up the use of the word “bereft” over time. It really took a dip in the 1940s and I’ll probably try to find out why.
In the morning kitchenette interaction, the thing that was lacking was coffee, and the choice of the word bereft in this specific case seems a bit dramatic. The word may also communicate on some level that I really want to interact on your terms, but I just don’t know how. It takes a great deal of concentration and sometimes the words just pour out and I wish I could collect them and rearrange them into something, well, “normal.”
The coworker who kindly asked the question was likely to think, “Well, that was an unusual response,” and the moment would vanish along with the multiple mundane things that occur in a nondescript workday. But for me, this common office interaction became a source of shame that lingered for months. This wave of embarrassment was probably unnecessary but it is something that people on the autism spectrum face when they are aware of basic communication differences that can sometimes lead to misunderstanding.
When we have people who truly understand communication differences, we find that they often see these types of interactions insightful, and sometimes endearing. While lamenting to a trusted coworker about my perceived social awkwardness, she said how lovely it was that I was able to express such a deep love for coffee, and in turn, a deep appreciation for words. Bereft is a beautiful word that can express longing for acceptance, and even longing for something comforting, like a cup of coffee.
Thanks to our great support network we were able to do a quick turnaround and prevent the likely loss of a career for someone who recently reached out to us for help. We were so grateful for all the forces that combined and allowed us to be our mission of “a lifeline of support.”
M. had been “in love” with a young person they met over ten years ago. While they never had an in-person dating relationship, a heart was captured and imagination took over. Sending poems, emails, texts, flowers, candy, and more, can be lovely gestures when welcomed, but wound up being scary and threatening to the love interest who did not welcome them. Finally, a protective order was filed in an out of state court. The first order covered 24 hours, the second, two weeks, and three business days following our first call with the accused, the court would hear and see evidence to produce a two-year Protective Order which would have cost our new client their job.
Hearing someone so distraught, tearful, hopeless, and being baffled by this turn of events kicked us into high gear. This college educated professional was stuck in emotions and had no idea what to do, nor if they needed to appear in court despite simple court paperwork clearly stating they needed to attend in person. There was no plan, no lawyer, no defense strategy, and only three days plus a weekend to work with. Fortunately, this person immediately reached out to and signed up with both referrals we provided, one being a defense attorney licensed in the state of the proceedings, and the other, a therapist who provides services for those in the justice system. We owe a debt of gratitude to board trustee Tiffany Sizemore who provided the out of state referral, and to Shawn McGill who immediately took the call and offered his professional help.
The judge heard both sides of the case in great detail on the day of proceedings, taking autism into consideration but not focusing on it. And much to the surprise of most involved, including the defendant’s attorney, the judge did not place our client under a Protective Order because he did not hear criminal intent nor malice, and believed the testimony that they were moving on permanently and would never contact the plaintiff again.
We talked that night after it was all over, and I asked a question I have often thought about. “What rules did you follow that you learned growing up as a kid that may have led to trouble in this situation?” And right off the bat the answer was “Follow your heart. And if you work hard enough, you can achieve anything!”
Now, that last one is not true for any one of us! And while we routinely use phrases like these, they can lead some to overly apply them very literally and not know when to change course. Positivity is sometimes helpful but it can become toxic. So please consider the individual when you use encouraging words. We were lucky in timing and that we know the best network of helpers, but this was such a close brush with disaster that the client wanted us to teach with this story. In their own words spoken the night after things cleared up, “I just want to give presents to everybody who helped me. And I am a first grader in terms of dating – I was in love with a mirage! I ‘m definitely going to do the counseling too. But overall I want to tell this story and help make sure this never happens to anyone else, ever again!”
