| While April 2 is officially World Autism Day, for families like mine, everyday is an autism day. My younger sister, Erin, has autism. She is 22 now and very successful and happy, working in a supported employment program. In addition to that, my mother is also a special education teacher. Since autism and disability touches almost every part of my mother’s life, both personal and professional, I was really excited for her to see our program here in Tanzania when she came to visit last month.
I took my mom to Moshi 1, a center with two boys with autism. We worked with Jackson, a very happy and outgoing boy who was eager to learn and to work with us. We worked a lot on the Picture Exchange Communication System (PECS), a system of communication for people who are non-verbal. We also worked on using a basic sign for more.
Now, Jackson has his own personal PECS folder with the first 6 pictures he’s using. The pictures are related to his most functional needs, like the bathroom, and things he likes best, like porridge or the swing. By pointing to the pictures, he can communicate what he wants. The PECS system and basic sign language may seem like low-tech interventions, but don’t let that fool you: they are revolutionary. They allow children like Jackson to communicate with others, often for the first time in their lives.
The second boy we worked with, Sheddie, is more challenging. He has more significant sensory needs so we showed the staff how to do some sensory integration activities with him. This included simple things like letting him submerge his hands and feet into a bowl full of dry lentils and beans. We hope that helping him get his senses working together better will make the process of introducing communication methods less overwhelming for him. He also really enjoys music, so we encouraged the staff to use singing as a way to engage him.
Although scientists still don’t agree on what exactly causes autism, my international experiences have shown me that it is not unique to a particular country, ethnic group, or socioeconomic class. Although the individuals with autism and their families I’ve met while working in China and here in Tanzania live in environments that are completely different from where I call home, there are so many experiences that we share that when we get to talking the connection is instant.
My mother’s experience working in our centers here in Tanzania proved this to be true as well. She related to the staff and to the parents because she’s been in both roles herself – she’s been there. She has become very good at working with each child and understanding the different ways they think and interact with the world around them, then meeting them where they are. She explained to the staff in our centers that working with them means remembering the Swahili phrase, “POLE POLE” – go slowly! Following the child’s lead is another important concept she was able to demonstrate.
The common saying in the autism community is “if you’ve met one person with autism you’ve met ONE person with autism.” There is no cookie cutter set of steps that will work with every child and meet their needs. This could not be truer when working in a completely different culture and context.
But I am confident that we can and will make huge progress, not only raising awareness about autism in Tanzania, but also helping Tanzanian society become more accepting. After attending an autism awareness conference last Saturday for health and education professionals held by one of our local partners, Autism Connects Tanzania, I am even more hopeful.
Awareness and disseminating information is very important, but it is not enough. Children with autism need this information to be used to build systems that can give them the services and education they need to thrive. I’m so glad to be part of an organization working to provide both of those vital things in this community, where children with autism are no less deserving of these services and opportunities.