Neurodivergent Wellbeing: I-ASC the Experts
Written by Monica van Schaik with wisdom from Noah Seback and Giorgena Sarantopoulos
Neurodiversity is the recognition that neurological differences are natural and normal just like biodiversity. Neurodiversity is a fact. Differences in how we think, learn, feel, sense, and regulate occur amongst all humans. The term, neurodiversity, was coined by Judy Singer, a speaking autistic woman who understood neurological difference as another identity that faces marginalization and stigma in our society today, much like people who are marginalized or stigmatized because of their race, class, gender, or sexual orientation.
[Image Description: The graphic is titled intersecting oppressions. Below the title is a graphic of overlapping multi-coloured circles. Around them are the words: nationality, gender, class, race, sexual orientation, ability, nationality.] Image from AyanaTherapyNonspeaking people, like other communities of neurodivergent people (such as autistic people, dyslexic people, people with ADHD, etc.), are advocating for the adoption of a neurodiversity paradigm in which we:
[Image Description: graphic design in black, yellow, green and and orange depicting silhouettes of individuals with design images over their craniums, in a diverse range of colours and patterns such as graphs, flowers, puzzles, splatter paint] Image from EpicAssistThis doesn’t mean that we don’t support neurodivergent people or offer therapies, treatments and medications. The neurodiversity paradigm teaches us that nonspeaking people need to make decisions and guide their own wellbeing and treatment plans. It also means that our nonspeaking loved ones need to guide how we— as parents, caregivers and practitioners, understand wellbeing for each nonspeaking person that we support. It means that we need to step aside and empower nonspeaking people to make decisions for themselves.
To do this, we have to put away our ideas about what wellbeing and success means to us and remember that neurodivergent wellbeing looks different. We need to step aside and seek to
understand what this means for the nonspeaking people in our lives. Honestly, I think wellbeing looks different to all of us. If I asked everyone in my family to tell me what wellbeing means to them, I would get a diverse response. Some of us take vitamins everyday, some of us have a strict exercise regime, some of us love our jobs and work long hours and some of us have strict work/home life balances. In the neurodiversity paradigm, we are extending the same agency and respect that neurotypical people often automatically receive, to neurodivergent people.
As we all know, it is easy to talk about this but harder to put into practice. To help, I dug a little deeper into what wellbeing means to our community? And how we can empower nonspeaking people to choose what wellbeing looks like for themselves?
First, I reached out to Noah Seback. A nonspeaking writer, Spellers & Allies advocate, peer supporter and entrepreneur. Here’s what he had to share:
Wellbeing can be a moving target for any individual, but even more so for nonspeakers. Why, you ask? Let me break it down for you. Our bodies, emotions and senses are in a constant state of flux, reactive from day to day and minute to minute. If we are grounded and anchored internally, then constantly managing this external input is easier. But our internal wellbeing has been maligned from misperceptions, underestimation and mistreatment. Even after we gain a voice, too many parents and professionals have turned a blind eye to this fact.
So we share this common identity , yes, and yet, “If you’ve seen one person with autism, then you’ve seen one person with autism,” right? We each need the freedom to choose our own definition of wellbeing. Those who support us have become accustomed to determining what wellbeing looks like for us. They are looking through their own lens, not ours—however well intentioned. Take, for instance, what seems to be the logical progression for spellers: attending college or independent typing on a keyboard. While wonderful pursuits, these aren’t every spellers’ priority. Maybe, just not now. Maybe not ever. There is no cookie cutter formula for a neurotypical’s future and wellbeing, so why should there be for a nonspeaker’s? Now, you can ask us what WE want.
[Image Description: close up of a tray of rolled out white cookie dough with one gingerbread man-shaped cookie cutter stamped out throughout the dough.]Our extreme interdependence and need for support complicates matters. We say “nothing about us, without us”— but practically speaking, we are living “nothing about us, without them [parents, caregivers, CRPS]”. It can be hard to step out of that parent or caregivers’ shadow and say, “No, this is what I need.” What if they choose not to hear us? What if it makes them angry? What if they reject our opinion? We accept our need for support, but why can’t we guide what we do with it? Can you support us to map out our own wellbeing? After all, we are the experts on us.
Neurodivergent people should map out their own wellbeing.Hmm, Noah makes such a great point that nonspeaking people are living “nothing about us, without them [parents, caregivers, CRPs].” Not only that, but he also highlights how much fear, doubt, and vulnerability can be present when nonspeaking people start to assert what they want and need— especially when it differs from what they believe. This led me to wonder, how do the parents of nonspeaking people do it? I witness incredible parents, multiple times a week, who are diligently doing their best to make space for their nonspeaking children to choose and dictate what wellbeing looks like for themselves. How do they step aside and empower their nonspeakers to ask for what they want even when it differs from their own opinion? How do they learn to do this after many years where they were forced to make their best guess at what wellbeing meant to their nonspeaking loved one? I’m not a parent but I know from my work as a therapist and an advocate that habits are tremendously hard to change (and this is an understatement!).
Next, I reached out to Mom and Leadership Cadre member, Giorgena Sarantopoulos to hear more about what wellbeing means to her as well as how she steps aside to make space for her nonspeaking son to make decisions for his own wellbeing.
As a parent who works several jobs and “wears several hats,” I have many responsibilities. If essential needs (food and shelter) are taken care of for myself and my loved ones and everyone is healthy, I can be happy. But, I can still feel overwhelmed and lose my orientation. If I get to a point where I’m losing track of my “hats,” I feel my wellbeing slipping away. With all the hats I wear, wellbeing to me is being aware of all the details in my life and knowing the purpose and plan for each of them. If I feel organized, I can then enjoy the essential blessings I have.
[Image Description: An internet meme featuring actor Chuck Norris wearing a cowboy hat, Pointing to the camera as though giving solid advice. Meme message says: If you wear too many hats, you’re bound to tip over] My commitment to my role as an S2C Practitioner and as someone who produces web content for the Spellerverse means that I must commit to actually practicing at home what I preach to the families I serve. It is, still, often difficult for me to step out of “mom-ing” and see my neurodivergent son as someone who doesn’t always think and feel the way that I assume that he’s thinking and feeling. I’ve long been regarded as “the person who knows him best,” but it is not true, he knows himself best. It is very hard for him to disagree with me when I make statements on his behalf, therefore I need to remind myself frequently that I cannot assume what he wants.
Let me give you an example. Because my son has expressed disappointment with his level of communication support at school and is saddened by the further social limitations on account of COVID restrictions, it is easy for me to believe that he doesn’t want to be at school anymore. When, in fact, he continues to express that he does want to be there. When I listen to him and ask him about this desire, he can also tell me how to help him maximize his wellbeing at school. If I made assumptions and, by parental default, made those decisions for him, it could result in a lot of unhappiness for him! It is necessary for him to tell his own story, and direct the actions that will lead to his wellbeing. One thing is for sure, our nonspeakers know themselves well!
STEP ASIDE: “Those who support us have become accustomed to determining what wellbeing looks like for us. They are looking through their own lens, not ours” – Noah SebackSo it seems that there are a few things we can do as parents, caregivers, and CRPs to know that we are stepping aside and empowering nonspeakers to define wellbeing for themselves. First, we can be aware of what we need for our own well-being. That way, we can make efforts not to mix our ideas of wellbeing up with what wellbeing means to the nonspeaking people in our lives. Second, we can remind ourselves that we cannot assume what nonspeakers want. Third, we can help nonspeakers map out what wellbeing means to them and how they envision it for their lives. Finally, we can bring our concerns to the nonspeaking people we support so that we can help maximize their wellbeing— even in an imperfect circumstance, like school. We aren’t saying it is easy but after all, as Noah said, “we are the experts on us”!
Monica van Schaik is an S2C Practitioner, counselor (MSW, RSW), Relationship Development Intervention® Consultant, and disability justice activist in Kitchener, Ontario, Canada. She is a proud member of I-ASC’s Leadership Cadre and coordinator of the Spellers & Allies Advocacy Network. Creating well-being for herself also includes cross country skiing, renovating her home, and cooking delicious food.
Noah Seback is a nonspeaking autistic, self-advocate, and Lived Experience Expert who serves the nonspeaking community as a Peer Support Specialist through his mentoring business qUirk. He is passionate about inner wholeness and wellbeing for his often traumatized peers. Noah nurtures his own well-being in the great outdoors, especially hiking, and in fellowship with like-minded friends.
Giorgena Sarantopoulos serves the nonspeaking community as an S2C Practitioner, member of I-ASC’s Leadership Cadre, faculty in S2C Practitioner Training, as well as advocating in her local community for school inclusion and AAC communication rights. Giorgena is currently waiting out the end of a long and snowy Canadian winter in order to put on her gardening hat again.
Sources:
Armstrong, T. (2015). The myth of the normal brain: Embracing neurodiversity. AMA Journal of Ethics, 17 (4), 348- 352.
Rosqvist, H. B., Chown, N. & Stenning, A. (Eds.), Neurodiversity studies: A new critical paradigm. Routledge Taylor & Francis Group. 2020
Singer, J. (2017). Neurodiversity: The birth of an idea. Judy Singer
The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy, and research. I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C)with the hope that other methods of AAC using spelling or typing will join our association
Leave a Reply