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Shining a Light on the Forgotten Piece of the Puzzle

Updated: Sep 15, 2020

by Melissa Lushington, “Don’t Cut Corners…Unless It’s Cake” – Blog Slice #9

Have you ever felt forgotten? Have you ever felt invisible? Have you ever felt like your autism made you a prisoner of your own body? That is the daily life of someone who is autistic and verbally challenged. A article titled “What Are the Symptoms of Nonverbal Autism” gives a clear distinction of what is meant by ‘verbally challenged’ and ‘nonverbal autism’ –“Autistic people may have difficulty talking to or carrying on a conversation with another person, but those who are nonverbal don’t speak at all.” Many parents and guardians rearing a nonverbal autistic child have been faced with extreme challenges to connect with them. Connection was always a struggle when it came to an Icelandic woman Margret Dagmar Ericsdottir as she raised her nonverbal autistic child Keli. Connection was also the motivation behind Margret’s travels through Europe and the U.S. in search of help on communicating with her severely autistic son as is documented in the film A Mother’s Courage: Talking Back to Autism.

I recently watched the documentary back in July, and I found the documentary to be insightful, inspiring, and engaging. It was insightful to hear from many experts explain to Margaret the many aspects of autism. For example, one expert talked about how autism can affect a person’s sensory ability. In this case, we have Keli whose autism affects his sensory abilities by making it hard for him to interpret different senses at the same time. This causes him to rely very heavily on hearing in order to get by through the day. Another expert explains how in some cases of autism, a person can live the first few years of their life functioning as a normal individual, and then when they reach a certain age they experience a regression wherein they lose their ability to communicate verbally with others. This was the case for one parent in the documentary, who explained that his son was functioning and socializing like a normal individual, and then one day when he went into the kitchen, his son looked at him, dropped his spoon, and started crying out, “The words won’t come out of my mouth, the words won’t come out of my mouth!”. Hearing this anecdote made me think about myself for a moment, and it made me feel like I could relate in a way to this story. Being mildly autistic and not knowing that I was mildly autistic as a child, I do remember a time where I was social during the beginning years of my life, and once I got to second grade I began to regress and became more quiet. It wasn’t that I became fully mute, I just became mostly quite around my peers and I was mostly isolated from my peers as well. A third expert even pointed out that autism is more likely found in boys than in girls, as is shown throughout the documentary the numerous amounts of boys that have nonverbal autism versus the small percentage of girls. This movie is also incredibly inspiring because it is represented by three words: never give up. Also, throughout the documentary, we hear from many experts, who state that nonverbal children like Keli are sent away to institutions due to them not seeing any potential in them going far in life. Margaret was told that she needed to institutionalize her son, but she refused. Instead she went on a quest that involved her traveling from Iceland to the United States and Europe to talk with autism experts on how she can unlock her son. Fortunately, Margaret was finally able to make a breakthrough by traveling to Texas where she meets a woman name Soma Mukhopadhyay, and with the help of a letterboard, Margaret was finally able to unlock her son and help him communicate with the world. I was really amazed to see the determination from Margaret as she fought for her son’s freedom in communication. I believe that it really does give justice to the title of the documentary called A Mother’s Courage: Talking Back to Autism, because even though this film is about Keli and nonverbal autism, it is mainly about Margaret and her determination to never give up on her son no matter what. It amazed me to see a mother believe in her son in ways that no one else did or ever would. It amazes me to know how Margaret created a documentary video to help other parents with autistic children because this documentary is not just about talking back to autism, it is about talking back to the critics who do not see potential in children with nonverbal autism, who see that nonverbal autistic children are unable to learn and understand the world around them, and who recommend that nonverbal autistic individuals should be institutionalized for their condition. The fact that Margaret was able to finally find someone who would help her child communicate goes to show how important it is for parents to always be strong advocates for their children, especially those who have special needs. It is about always being open minded enough to see the possibilities on how to treat conditions for people, that would help change lives for the better. It is about fighting for equal opportunity for all people regardless of their condition, and it is about proving a point that everyone has potential to do great things in life, they just need the right tools to help them get there. Finally, the most notable thing that I enjoyed most about this documentary, is how unbelievably engaging the film turned out to be. Every second of the film, I was heavily engaged and invested in all the participants of this documentary. Characters like Margaret, Keli, Dr. Temple Grandin, Soma Mukhopadhyay, and even the other parents and autistic children of the film made the experience of watching it a fascinating journey to explore. Also, you get to really know each character and bond with them as if you know them yourself. It frustrates you when you see the main character go through their struggle, but then you are filled with overwhelming joy when you see the main character finally succeed. Overall, I became easily attached to everyone involved in this project, and once you watch the documentary, you will too.

To conclude, the film documentary shines not only a light on the autism spectrum, but it shines a light on what is perceived to be the forgotten area of autism, that is revealing the struggles that many families go through. As much as it highlights its most challenging obstacles, it also highlights its most rewarding victories, especially when you follow the journey of Margaret and Keli. If you are a parent, you will see yourself in Margaret, if you are a child with nonverbal autism, you will see yourself in Keli, Mitch, and other nonverbal autistic children, and some of you may be able to see yourself in other characters who are featured in the film. I cannot recommend this film enough. Please order your copy of A Mother’s Courage: Talking Back to Autism on DVD on It is a wonderful documentary, that is guaranteed to give you hope in a world that seems hopeless.

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