I’ve always known I was different. As a toddler, the world was a jumble of overwhelming sensations, lights too bright, noises too loud and touch too intense for comfort. Because of the sensory challenges, I usually seek solace in spinning, or doing things I was able to control like lining up toy cars. Other people seem to be fine with situations that call for responding, and have no problem with the overload that people around me constantly provoke, with their staccato sounds, which I wasn’t able to understand until well past six, as well as unpredictable movements and inexplicable behaviour. I just seem to be out of place in a world hard to make sense of.
After my diagnosis at age three of Autistic Disorder with severe delays in all areas of development, the family was mobilised with even more urgency to help me to navigate life better. I was put through a number of intensive therapies, especially for speech, but they were not successful in helping me catch up on age appropriate skills. After three years, it became obvious that I would do better with a change in direction.
When I was about six, Mum started to use my strength as a visual thinker to put in place an individualised program catering to my learning style, and things started to fall into place. Previously, I had rote-learned all the drills drummed in, which had no meaning for me. With the sea-change including visual material, music, immersion and hands on activities, I started to learn that the sounds people made were words in language that stood for things. I began to understand what language is and how it is used and to make sense of people and the world around me.
Despite continuing with speech therapy and other professional input, I was still not picking up speech. The turning point came at age nine when I learned a method of assisted typing with a communication partner’s physical and emotional support to use a speech generating device to speak what I typed. This changed my life, I became really motivated to use assisted typing to connect with people because my eyes were opened to a whole new world.
My situation improved enormously after finding a method of communication, and I was able to get more out of from mainstream schools, go on to further studies and do many things most people take for granted, such as participate socially, being involved in groups and give presentations. The world offers more opportunities for meeting people with my typing to “talk”, doing group discussions or going on trips where I could now savour the experience and communicate these events to others, and also hearing about their versions.
However, new experiences also bring rising anxiety and sensory overload, as the stream of information from unfamiliar people and places needs to be processed and translated into meaning. Over the years, I’ve learned to manage by a strategy of going through my internal library of various experiences and comparing my previous activities with each new encounter. By making a virtual trip to the past, and knowing that I’ve been there before, I am more comfortable with taking on new experiences in manageable chunks. These efforts work for me together with many other compensatory strategies for navigating life with all my challenges.
On the other hand, communication using means other than speech is not well understood, as speech is taken for granted as the gold standard of communication. Lack of prior knowledge of diverse communication methods also resulted other people questioning our high support requirements in methods such as assisted typing, such as, “Why is that person’s hand on your shoulder when you type?” or “Can’t you type by yourself?” I have to explain time and again that the physical touch helps to give me feedback of my arm in space, and to help initiate arm movement towards typing. Anyhow, those questions are answerable.
Despite a method of communication to get by, there will always be people who remain fixed in their ways. For instance, whereas most people have accepted my use of typing to talk, there was a girl in one class (online) who never talked to me. Even in a breakout room of three people, she only talked to the other person and steadfastly ignored my attempts to join in the conversation. Luckily, I have learned from hard experience that some people may choose not to be open minded, but then again, you don’t need to bring everyone on board. It is possible that she may also feel insecure and does not respond well to differences. I feel that I just have to work harder in doing my best, in helping to educate her and others like her to understand that we are not from outer space, but have similar needs, desires and aspirations like most people as members of the human spectrum.
I am an adult autistic nonspeaker, diagnosed at three. I have complex communication and high support needs with my many autistic challenges including hypersensitivities, high anxiety, processing and movement coordination issues translating to not being able to develop speech. At nine, I picked up an Augmentative and Alternative Communication method via partner assisted typing (PAT). With assiduous practice in PAT for engagement with the world, and the motivation to work in advocacy for people without speech, I have graduated from mainstream high school to study at university and engage in a number of advocacy organisations to work towards access, participation and inclusion for people with disability.
This journey has been long and arduous, but also highly rewarding with meeting many allies and friends along the way. The journey continues…
Content is provided for educational and information purposes only. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your doctor or other registered health professional.