In honor of World Autism Awareness Day, April 2, we sat down with Resolution Fellow, Melissa Diamond, to hear about the amazing work she has been leading in supporting children with autism and trauma-related behavioral challenges in conflict-ridden areas throughout the world.
Could you start by telling us a little bit about yourself?
My name is Melissa Diamond and I am the Executive Director of A Global Voice for Autism. I recently graduated from the University of Bradford as a Rotary Peace Fellow with a Masters degree in Conflict, Security and Development. I am currently running my venture, A Global Voice for Autism, and trying to figure out the most effective ways to make a positive impact in this world.
What inspired you to start A Global Voice for Autism?
I was inspired to start A Global Voice for Autism in 2012, after traveling to Jerusalem with my university and meeting a family from the West Bank that hid their daughter with autism in their home due to autism stigma and a lack of available services. Initially, I set out to help this family and their community. However, as other communities began to reach out and request similar support, A Global Voice for Autism grew into an international organization that supports children with autism and trauma-related behavioral challenges, as well as their families and teachers, in conflict-affected communities in eight different countries.
Do you have any personal experiences that made this venture particularly meaningful for you?
I have a close friend with autism, Gina, whom I met when I started volunteering at her group home when I was sixteen. She is like a sister to me. When I met the family in Jerusalem in 2012, it struck me that if Gina had simply been born somewhere else, she might have grown up secluded from her community instead of attending school, swimming in the Special Olympics, and spending time with friends as she had the opportunity to do in suburban Minneapolis. Gina continues to be an inspiration and motivation in all of my work with A Global Voice for Autism.
What does your venture aim to achieve?
A Global Voice for Autism aims to equip conflict-affected communities with the means to support children with autism and trauma-related behavioral challenges in their classrooms, homes, and communities. In order to ensure that these children can live full lives and participate in their communities, we focus on equipping community stakeholders with both the intellectual and emotional capacities to support our children in all aspects of their lives.
How does your venture go about addressing these goals?
A Global Voice for Autism takes a holistic approach to autism support. While the core of our programs focuses on training parents and teachers in evidence-based practices for home-based and classroom-based autism support, we understand that, especially in areas where knowledge about autism is limited and stress is high, this isn’t nearly enough. Because of this, we also carry out awareness-raising activities for local community members, from shopkeepers to government officials, to address misconceptions about autism. We also offer Support and Self-Development groups to our trainees (teachers, parents and siblings) so as to ensure that they have the self-care skills and emotional capacity to support the children in their lives.
Additionally, and maybe most importantly, many of the children, parents, and teachers we served have experienced or are experiencing ongoing trauma due to the realities of their lives in conflict areas. Because of this, all of our programming is trauma-informed and we emphasize the cultivation of safe, private spaces for sharing and growth in all aspects of our training and support programs.
Image courtesy of A Global Voice for Autism
How has the Resolution Fellowship helped you achieve your goals?
Resolution was the initial supporter of A Global Voice for Autism’s work. When we were still an idea and not yet an organization, Resolution believed in our mission and invested in our work. My current Guide, Katie Naeve, and former Guide, Morgan Mandigo, were invaluable during our first program implementation in Jenin and have continued to offer vital support throughout the growth and development of the organization.
Do you have any updates on the recent work of A Global Voice for Autism?
This past year, we have been confronting many challenges and adapting to constant changes. We had a program that was ready to launch in Turkey, but due to some factors related to the country’s changing political situation, we had to put the project on hold. We are now working on fundraising for two new projects: a teacher and family training program in northern Jordan for Syrian refugees and members of the host community, and a training program for autism professionals and educators in Ramallah. We are aiming to launch both of these programs over the summer.
Also, we have a new #HumansOfAutism campaign on the A Global Voice for Autism Facebook page. Inspired by Humans of New York, we will be sharing autism stories from people with autism, the people who love them, and the professionals who support them around the world every day throughout the month of April.
What are some of the challenges you’ve faced in carrying out your plans for the venture? How have you overcome these obstacles and learned from them?
As mentioned above, challenges arise frequently when working in communities that live with the impacts of conflict. While it would take pages to go into all of the challenges that have come up since our first program in 2014, I can say that creativity has been the key to overcoming these challenges. From managing relationships with partners whose values turned out to be different than our own, to an evacuation from one of our program sites, our teams have approached the challenges with creativity and have found ways to make the best out of challenging situations. While these situations can present some setbacks, they also underscore the need for our work and highlight that without our programs, many of the children we serve would be unable to participate in community life outside of their homes.
How have you interacted with the communities you serve, particularly with mothers of children on the Autism Spectrum, and what have you gained from these interactions?
At each of our program sites, the participants and volunteer teams become like a family.
One of our mothers highlighted this when she said, “It felt like we were one family. We felt that the child we were dealing with, from the bottom of my heart I felt as if the child were my own son or daughter. There was a lot of affection and familiarity among us, and the nicest thing was there was lots of honesty and no artificiality at all.”
These communities continue to interact with us through WhatsApp long after the initial trainings have concluded, and these ongoing interactions with the mothers and the updates on their children’s progress motivate me through the greatest challenges that arise. Just last week, one of the children we worked with in Turkey, who was non-verbal at the time, started talking. Now he’s saying “I want…” and asking for things. Milestones like this are the best motivation in the world.
Did you experience any moments over the duration of the project that were particularly powerful or meaningful to you? Why?
There have been so many meaningful moments. Here are two that stand out in particular.
Back in 2014, when we were in Jenin, we had a 5-year-old boy in our program who could say some words, but found it easier to cry and scream to communicate his wants and needs. We taught his mother how to teach him to start making verbal requests and she worked with him at home every day. Two months into the program, he made his first verbal request, “I want music,” during a program session when he wanted to listen to his favorite song, Gangnam Style. Of course, this in itself was a meaningful moment, but what has been even more meaningful is going back to Jenin year after year and seeing his ongoing progress. He’s enrolled in a mainstream school now. He has friends. His mother is a resource to other mothers in the community. He was the first child who ever had an intake with A Global Voice for Autism and to see him go from a little boy who never left his home and rarely spoke to the boy he is today has been a magical experience.
The second was in our parent Support and Self-Development group in Mersin. We did an activity we call “Try to Fail.” I won’t’ go into details, but basically, we send the mothers out into the community to “fail” at a list of tasks. After this activity, a couple of the mothers seemed completely transformed. They were shocked that they had gone out into the street and talked to strangers, and even more shocked that those strangers had been so responsive. The following week, two of those mothers, who never took their children out in public, decided to take their children with autism into the community and to “try to fail” with them. They proudly told others their children had autism and asked for help. They were surprised at how receptive the community members were. People had questions but everyone was kind and understanding. After that, they started taking their children into the community regularly.
What lessons will you take away from this venture after it has been completed?
There are many lessons that I will take away, but one that stands out is the value of flexibility. No matter what you’re doing, the only thing that is just about guaranteed is that unforeseen circumstances will arise. Running A Global Voice for Autism has taught me to embrace unexpected situations and to use them as opportunities for innovation rather than excuses for setbacks in my work.
Are there other projects or activities you’re engaged in currently that you’re passionate about?
Last summer I had the opportunity to work with a great migrant women’s organization in Greece. I have continued to be involved with them remotely, and as women from the organization have relocated to other countries, I continue to engage in advocacy work to ensure that they are settling in well and feeling safe and supported.
I am also a mentor for the Clinton Global Initiative University and get to work with many inspiring young changemakers who are working on innovations for people with disabilities.
I am also currently working on writing a book (much easier said than done!)
When you’re not involved in social justice work, what else might you be doing? Any hobbies?
Writing, drawing and traveling are all hobbies of mine. The travel is often a mixture of work and spending time with the people I love around the world.
I often create pictures using verses and stories I have written. This is one of my favorite ways to relax.
What’s your favorite quote?
“With love and patience, nothing is impossible.” — Daisaku Ikeda
What advice would you give other college students who are looking to start their first social venture?
Just get started. You don’t need to be an expert to take that first step. Talk to as many people as you can, share your idea and learn from their knowledge. There will be people who dismiss you along the way, but you will also find people who will believe in you and want to join your team.
What are some of the thoughts running through your head on World Autism Awareness Day? What does this day signify for you?
In the United States autism community, there are often discussions about the need to shift the month from one that focuses on awareness to one that focuses on action. However, in many parts of the world, autism awareness has yet to be achieved and spreading basic knowledge about autism is important. Conversations about autism are often very U.S.-centric, but autism doesn’t discriminate. There are people with autism in all places and from all backgrounds. I hope that people will use the occasion to explore autism beyond what they think they know.
Also, autism doesn’t exist in a vacuum. It is part of the human experience. In order to address autism, especially in areas of conflict, you have to engage with all aspects of people’s lives — addressing trauma, ensuring that people have safe accommodation and access to healthcare are not separate issues, but intricately intertwined with supporting the needs of people with autism in a community.
Do you have any closing remarks?
This World Autism Awareness Month, A Global Voice for Autism is hosting a #HumansOfAutism campaign on our Facebook page to shed light on the experiences of people with autism, the people who love them and the professionals that support them around the world. Follow along to learn what life with autism is like from Syria to Uganda. www.facebook.com/aglobalvoiceforautism.
*Interview has been edited for clarity.