Getting to Know Your Neurodiverse Community

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

[Image of Ian, a white man smiling. He has red hair and is wearing a black t-shirt. Below Ian is Moncia, a white woman smiling. Her hair is up with thick bangs in the front and is wearing a pink t-shirt.]

This blog post began when I asked Ian to develop a message for the allies who attended the first Spellers & Allies Advocacy Network meeting in October 2019. Ian and I both believe that understanding, talking about and celebrating neurodiversity is extremely important. Once we realized this common passion, we decided to continue the conversation and share it as a blog post. 

We both identify as neurodivergent- Ian is happily autistic and Monica is passionately dyslexic.  We are both disability justice advocates and motivated to spread the good news that there isn’t anything wrong with us, we are simply representations of the beautiful neurodiversity that exists within our human population. We hope this conversation will help tell you that we really are not so different from anyone else.

Monica: What word would be most important for you to share with the ally advocates who will be watching this video

Ian: I think that I would like to talk about neurodiversity. 

Monica: How would you define neurodiversity for everyone? 

Ian: I would define neurodiversity as the idea that individual differences should be celebrated.

Monica: Why is it important for the ally advocates to understand this, Ian? 

Ian: I think that it is important to understand that individuals who are neurodiverse need to be seen as the same as you and me. I truly believe that you and I are the same but we communicate differently. 

Ian: Have you always been proudly neurodiverse?

Monica: I wasn’t always proudly neurodiverse, no. Most of my school years were spent knowing deep down that I learned differently than those around me but I was too busy putting all of my energy into keeping up and not letting anyone know that this was the case. At the same time my family, who has always embraced disability as something of value, countered the narrative I felt from school. 

I think hearing these messages as a child made it easier for me to adopt pride in being neurodiverse when I was officially diagnosed with dyslexia in university. Today, neurodiversity inspires me to think of creative strategies and solutions to my struggles. It also inspires me to think about my dyslexia-related strengths and to spotlight these for others who only see my deficits. Being proudly neurodiverse is something that I’m still working on but the more I surround myself with people who value diversity, the easier it is to be public and proud. 

Ian: It seems we all struggle with identity in one form or another. In the long run it all comes down to learning to love yourself. 

It has only been since I learned to use the letterboard that I truly felt like I was an accepted member of society. Having been isolated prior in school and in my community I never felt I would be in a situation that would allow for my inclusion. I am more able to adapt now that I have found my voice that is able to share as in this discussion.

Monica: Can you tell me about some of the ways that you show and share that you are proudly neurodiverse to the people around you?  

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

[Image of Ian giving Monica bunny ears. They are both smiling]

Ian: I now have the opportunity to address people and share my story on many levels. I’m like the phoenix rising up from the ashes of my former existence. I want to thank Elizabeth Vosseller for changing my life by teaching us about the letterboard. Without it I may never have had this advocacy happen.

Monica: Being known is so important to all of us humans and I imagine you couldn’t feel known to others before communication was possible, especially with the social stigma and assumptions about apraxic individuals. 

Like you, I think the main way that I show I am proudly neurodiverse is by talking about how dyslexia is both a challenge and a strength in my life. 

Ian: I am only now finding my true voice. Hearing this, all people deserve a chance to be heard.

Ian: When making new friends do some or all need to be neurodiverse? 

Monica: It has been nourishing for me to have friends who are neurodiverse. I find they are able to empathize but also laugh and problem solve with me when I need it. I have some wonderful neurotypical friends too though. 

Ian: I have collected a lot of exceptional people in my life. They include neurodiverse and typicals. 

Monica: What are some common mistakes that people make when trying to support you?

Sometimes I sense that neurotypical friends or/and neurodiverse friends who are different from me get nervous about how to offer and support me. Do you ever feel this way? If so, what are some common mistakes that people make when trying to support you?

Ian: I may have had more experience with responding to how others see me and how I really am. I’m not so different than you. I need more support though especially because I don’t speak my words. It can be difficult for people to be patient as I spell my end of the conversation.

Monica: I think speaking people can struggle to wait for spelling to happen. This is something that I think I’m still working on. Do you have any advice for speakers who are just starting to learn to be patient while you spell?

Ian: It has the same reasoning as listening while somebody is talking without interrupting. It is hard to control one’s mouth, just as it is as hard for me to control my body. And I think it’s the polite thing to do to let others finish their thought.

Monica: I think the main mistake people make when wanting to support me is not asking questions. I like it when people ask me questions about my experience and what support looks like. It makes me know that they care and are interested in learning. 

Ian: Yes, it’s nice when someone wants to get to know the real you.

Ian: How are you coping in this not so pleasant time? Does your mind get stuck on where we might be going in our new normal?

Monica: I think that the pandemic is showing the interdependence and sensitivity of the environment and all of humanity. The concept of neurodiversity inspires and challenges me to accept that we are all interdependent, that it’s okay for me to ask for help and that it’s okay for me to need things that other people don’t need. I hope that this global pandemic inspires others to reflect on this too and be more in tune with each other and with our environment.

Ian: Excellent of you to find the silver lining in all of this, I am too. I’m just hoping it will continue for the good of our planet. I believe much good will take place.

Monica: June 18 is Neurodiversity Pride Day. What are some actions that our community could do to show and support neurodiversity pride? 

Ian: Get involved with your local government, go to city council meetings, make your words something to be proud of, and include your family in your advocacy efforts. 

Monica: Have a toast to neurodiversity and a conversation about what neurodiversity brings to your life- the challenges and also the joys and advantages. 

Monica: Do you want to share some concluding remarks?

Ian: I am a proud advocate for autistics and the LGBTQ communities. I wish more people understood that we are no different from them. Let’s show our support by making a short video representing these groups just hanging out and doing ordinary everyday things. It would cause a ripple effect to see us looking marvelously included. The fact that we are having fun together should open some hearts. 

Monica: I love the idea of normalizing just doing ordinary activities in our way. Normalizing our existence. 

 

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakerS2C, Spelling to Communicate, I-ASC, Autism, nonspeakerThis blog post was written as a collaboration between Ian Nordling (member of the I-ASC Nonspeaking Leadership Council and Spellers & Allies Advocacy Network) and Monica van Schaik (member of the I-ASC Leadership Cadre and coordinator of Spellers & Allies Advocacy Network).

 

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

6 responses to “Getting to Know Your Neurodiverse Community”

  1. Denise Currie says:

    Wow, this is such a wonderful exchange of ideas, sentiments and advice to the world at large. So well articulated. I am so proud to be part of the I-ASC community as I pursue my Practitioner Training to facilitate communication to non-speaking individuals and to be an advocate for the cause of ‘giving a voice to spellers’.

  2. Pamela Hicks says:

    I am flooding with tears and a full heart reading this. Ian is so amazing! My children grew up with him since he was months old until about 5 when my family moved states. I remember when this all started and was being figured out. The what, why’s & how’s. Ian’s family i
    Elizabeth!! You are still a rock star and I miss you and am so proud. Im in awe of your dedication. You started off running and haven’t stopped. Bowing to you my friend. Not to mention Momma bear. 😉 I love you R!
    When I saw Ian a couple years ago he used the board and spoke to me for the first time ever, in maybe 19 years ago., I couldn’t breath. It was one of the most touching moments in my life. Ian you are wonderful and I am so proud of all you are doing and how far you’ve come and I look forward to chatting with you again.
    Everything you say is inspiring and you just simply melt my heart with your love and wisdom.
    This program will change lives. Being heard and having a voice is beyond priceless. This world is hurting and everyone needs to be heard and Willing to stop and hear each other with respect and open minds.
    Love love love this!

    • I-ASC says:

      Thank you for your comment Pam. It is so wonderful that you have known Ian, Rosaleen and Elizabeth for so long and seen how all three have evolved over that time! The support of friends and allies like you make our community grow. We are so much richer to have people like you in our lives!

  3. Every bit of information I’m able to glean regarding spelling as communication is a tremendous bonus,and truly remarkable! These two deserve huge kudos for their articulate and informative narratives,and I am so grateful to be able to read about them. I am also inordinately proud of Ian, my adored nephew, who continues to delight our family with his tremendous growth and strengths! Hats off to all involved, and many thanks!

    • I-ASC says:

      Thank you for your feedback, Janelle! We are grateful to be informed and led the neurodiverse experts who are able to share from their lives, experiences and wisdom so that we can be better informed. Know better, do better!

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