Updated: Nov 19
As you may know, in addition to my advocacy and mentoring work, I am currently studying Speech Pathology with the hope of working with Autistic and Neurodivergent individuals in the future. My own experiences with allied health professionals and firsthand experience of being Autistic have made me passionate about becoming a professional in this field. I hope to help other Autistic and Neurodivergent individuals to see their strengths and change the deficits-based medical approach to Autism, Neurodiversity, and disability. One area that concerns me, in particular, is the deficits-based language used when it comes to non-speaking individuals.
I first met a Caleb*, a non-speaking Autistic boy, when I was 14 years old. At that stage, I was only just starting my advocacy journey and learning about how I felt about my Autism. It was around the time I started pulling autobiographies by Autistic adults off the bookshelf and wondering whether there were other people like me out there.
My mum and I pulled up to an idyllic farm. I was there to do some research for an equine studies subject. I was greeted by a beautiful family. And then I met their son Caleb. He came running down the hill, covered in mud. I was taken with how joyful and happy he was; his positive energy was infectious. Although it was clear Caleb and I were very different people, as we interacted and started to build a connection, I began to see our similarities.
Caleb communicated through eye contact, gazing into my eyes, and tactile input, nudging me now and then. I didn't need words with Caleb. We just seemed to tune into each other and communicate via our own 'language'. Caleb demonstrated that speaking is not the only way to communicate. He showed me it was okay to just be quiet and calm. That it was okay to stim openly, and that I didn't need to ‘mask’ – try to hide my Autistic traits. He was completely and utterly at ease with his Autistic identity, and he helped me learn to love mine too. I am forever grateful for the things that Caleb taught me.
Watching Caleb on the farm that day also showed me how to communicate better with horses. I started not to speak as much when I was around them. Instead I communicated through energy and became more aware of my empathy and how to channel it. I learned to relax and tune into the natural environment. And the horses relaxed more around me too. This was their preferred method of communication.
I saw the beauty and power behind 'silence'. I tended to talk when I was anxious. I learned to quiet myself at these times and respect my need to opt out at other times. Through the silence I noticed a lot more in my environment. I connected better with my body and mind. And I tried to connect with the present moment more rather than worry about the past or future. I was more mindful in my daily interactions and learned more about how I could manage my anxiety. I started communicating my thoughts and feelings through my art with the help of an amazing art teacher. My artwork became more expressive as a result.
Meeting Caleb also changed the way I viewed the Autism spectrum. I no longer saw it as
linear, from 'severe' to 'mild'. With Caleb, I saw no deficits. Rather I saw strengths: authenticity, passion, intuition and peace. I did not see a 'low-functioning' person; I saw an individual immersed in his surroundings and connected deeply to nature. I am sure it is not always easy for Caleb, but I admired how he savoured the present moment.
Later Caleb’s mother told me about his incredible way of relating to horses, and shared a picture of him wordlessly communicating with a horse. I watched him around the horses and was in awe of how they quietened around him. They respected and loved him. He spoke their language. And that's where my idea for an artwork was born.
Over time I learned more about non-speaking communication. When an Autistic individual is non-speaking, it means the person is not able to speak. There can be causes, such as apraxia of speech. There can also be a spectrum within itself between speaking and non-speaking, like partially speaking individuals and part-time AAC users. In particular, I became more aware of the damaging assumptions so often made about the cognitive and intellectual capabilities of non-speaking individuals when I read Naoki Higashida's books ‘The Reason I Jump’ and ‘Fall Down 7 Times Get Up 8’ and I realised there is a lot more work that needs to be done in this area. One of the key messages I have taken is, do not assume an Autistic person's competence or intelligence based on our outward appearance. Our idea of success and intelligence may look different compared to a Neurotypical, and this is not any less valid (Amy Sequenzia writes a brilliant article on this point which you can read here).
I am ecstatic to see so many non-speaking self-advocates beginning to write about their experiences and help change people's viewpoints of the Autistic experience. I would greatly recommend you discover the insights of some of the incredible Autistic advocates who continue to break down stereotypes and shift the deficits-based narrative around Autism. Seek out multiple personal perspectives, too, and learn from #ActuallyAutistic experiences. I say “multiple” because Autism is a huge spectrum and every Autistic individual is different. The amazing thing about Autism is that there is always something more you can learn, even as an Autistic individual. By connecting as a community, we can all help to increase acceptance and inclusion in society.
Here are some non-speaking Autistic advocates I recommend:
Naoki Higashida - Author of 'The Reason I Jump' and 'Fall Down 7 Times, Get Up 8': https://geekclubbooks.com/2017/07/naoki-higashida-rethink-autism/ https://time.com/4856602/autism-nonverbal-book-naoki-higashida/ Mel Baggs: https://withasmoothroundstone.tumblr.com/ Tito Mukhopadhyay: http://www.halo-soma.org/about_writings.php Diego Pena (Author of 'Anatomy of Autism'): https://www.facebook.com/DiegoPenaWrites/ Ido Kedar (Author of "Ido in Autismland: Climbing out of Autism's Silent Prison"): http://idoinautismland.com/ Peyton Goddard: http://peytongoddard.com/ Barb Rentenbach: https://twitter.com/BarbRentenbach1 Benjamin McGann: https://autisticadvocacy.org/about-asan/leadership/ Amy Sequenzia - https://ollibean.com/author/amy-sequenzia/ Carly Fleischmann https://www.facebook.com/carlysvoice Growing Up Unique - Autism Through A Child's Eyes: https://iamcadence.com/ Tim Chan - Author of 'Back from the Brink' and TEDx speaker: https://www.timchan.com/ Emma Zurcher-Long: https://emmashopebook.com/ Cal Montgomery (Part time AAC user): https://montgomerycal.wordpress.com/ Endever: https://anotherqueerautistic.wordpress.com/ Autistic AAC Underground: https://autisticaacunderground.blogspot.com/
*Caleb is a pseudonym that has been used to protect the individual's identity