Speak No Evil – A Sibling Voice for Low Verbal Autism
By Natalie Palumbo
I am 18, a rising High School senior, and the younger sister of a 21 year old brother with low verbal autism. I am under a tremendous deadline. I am attending an out of state summer pre-college program at Ringling College of Art & Design, and must complete several AP summer art projects for my high school before I leave. Anthony interrupts me every few minutes to show me the cat, the same movie he watches every day, and to play video games with him. I don’t have time to stop, and Anthony does not understand. I struggle to stay calm and give Anthony a little time while I keep on schedule and hope to meet my deadline.
I just saw the story about Jake Brasch and his mother Dawn from the Twin Cities Pioneer Press. In the video with the article Jake was speaking about the challenges of living with autism and his mother shared her perspective on coping while also being supportive.
Jake’s story gave me bittersweet emotions – first, the sweet. It was nice to hear feelings articulated so clearly. Most often, the autism coverage I’ve seen is overwhelmed with conflicting data, references to “early diagnosis”, latest thoughts on treatments, and debates over possible causes. Basically, articles that talk about autism while telling us nothing substantial. It was refreshing to hear from people who live in the real world of autism, and can speak to it. Hearing Jake, I could almost channel what Anthony must be thinking and unable to say – his feelings being over-stimulated, his senses painfully heightened, and everyday being new and unfamiliar. It certainly explains Anthony’s repetitive behavior, which for us is maddening, and for him it seems endlessly fresh. He can enjoy the same things over and over again for years and never tire of them. He will constantly listen to songs and movies of the moment, and obsess over certain video games. Anthony’s OCD allows him to expand his knowledge of something, learn new techniques, find glitches, and discover hidden loopholes because his interest never fatigues. Endless repetition without exhausting his interest allows Anthony to totally connect and learn. We just have to cope with the endlessly endless repetition.
I loved how Dawn Brasch was so in tune with her son Jake. Her understanding and support was comforting. I have witnessed people that refuse to accommodate the autism, try to force their standards, and are infuriated when it fails. They don’t change their approach to ask “why” and the relationship suffers. My mom always talked about the all important “why” question. If you can figure out why Anthony does something puzzling or frustrating, we could manage it. I try to remind myself to do that when Anthony interrupts me a million times while I’m working for the same thing so I don’t go crazy. I try to remember that to Anthony I am still the same as I was when we were little. Even though he will never understand my obligations, I love that I will stay a kid forever with Anthony.
Now, for the bitter. Hearing Jake speak made me feel stranded in the low-verbal world. Jake spoke of his frustrations and in those moments, I could see Anthony. There was a look in Jake’s eyes that I had seen wash over Anthony’s face. Hearing Jake’s thoughts made Anthony’s world very real to me. It validated the feelings Anthony can’t express. The interview took Anthony’s non-conversational world and gave it dialogue.
Hearing Dawn Brasch talk proudly about Jake’s graduation was heartbreaking for me. For us, Anthony’s graduation in June was not a triumph, it meant aging out. It felt like a dead end to all that connected Anthony to the world. More than ever this year, Anthony seemed interested in his classmates, and tried to interact with them – and now it’s all over. I return for my senior year without my brother, and I’m anguished.
I have seen many videos featuring high functioning people with autism. I felt alienated from those reports because they didn’t resemble my life with my brother at all. This interview with Jake and Dawn Brasch felt more real to me. Even though Jake was much more verbal than my brother, he shared similar challenges. Jake put words to my brother’s thoughts, and helped me understand Anthony better. I will be a better sibling to Anthony because I got a precious window into his world. My only heartache is I can’t hear Anthony’s thoughts from Anthony. I wish I didn’t have to search for insight from people “like” Anthony – I wish he could tell me himself. I’m never certain how close I am. I can only guess, and never give up trying.
Seeing my brother’s world articulated through someone else strengthens my belief that there is not enough attention for low and non-verbal people with autism. There is insufficient help from the medical world. The focus remains on small children they feel still have “a chance”. Meanwhile, my adult brother suffers. If no help comes, I will spend a lifetime searching for answers through the distant voice of others. The puzzle piece of autism will become all too real for me.
Natalie Palumbo is a high school student, younger sister to a brother with autism, and Contributing Editor for Age of Autism. Visit her art website at Deviant Art.
Not much is acknowledged about those with low verbal autism so it is great to see Natalie expressing her thoughts about brother Anthony who has autism. I am a mother of a low verbal adult with autism who is age 38. He has a brother who is 34 and is married with two small children. There is a wonderful fun relationship with them. If I could tell Natalie anything I would say that she might be surprised at the improvement in Anthony's communication skills as he gets older. My son has improved so much over the years!
Posted by: Martha Moyer | June 23, 2012 at 11:18 AM
Beautifully put, Natalie. I'm a mom of a non verbal, enough said.
Posted by: Eileen Casey | June 23, 2012 at 06:10 AM
Thank you for sharing your story. It hits so close to home. No, my two daughters are not teenagers or adults yet, but they both are nonverbal, and I feel so alone. All I ever hear about is Autistics who speak or high functioning Aspies. My children are not high functioning, and do not speak. I keep praying and praying that one day they will, because that would make life so much easier for them. I worry about the future and what will happen when the reach adulthood. I too wish more was being done or concentratetd on for those who do not speak. Thanks for making me realize I am not alone. God Bless!
Viviam
Posted by: Viviam Whittle | June 23, 2012 at 01:26 AM
Thank you so much for writing about your experiences with your brother, Natalie!
Just as you felt, "It was nice to hear feelings articulated so clearly... It was refreshing to hear from people who live in the real world of autism, and can speak to it." That is how it feels to read your writing!
Posted by: Twyla | June 22, 2012 at 11:48 PM
Natalie, I have recently come across many mentions of music helping with speech. Not just listening to music, but singing and playing instruments. My understanding is that this is the cutting-edge speech therapy being used with Gabrielle Giffords. Apparently, this is being used more and more with brain injuries, because singing and playing instruments use--and highly develop--a different neurological pathway, one that can be trained to handle speech.
In the past, I have noticed a lot of crossover between auditory processing--used for many autistics--and, of all things, Suzuki violin lessons. Not just violin lessons, but the Suzuki method, which involves a lot of repetition, a lot of games, a lot of listening to beautiful music on CDs, and group classes.
I'm wondering if you might be able to find a Suzuki violin teacher in your area who might be familiar with autism? More and more are, as many of these teachers are women in their 30's and 40's, whose children are part of the "1/88" with autism. I bet you could find an accredited Suzuki teacher in any city who would be willing to give private and group classes for autistic children and young adults.
Perhaps Suzuki violin lessons, singing lessons, and/or membership in an amateur choral group might be something your brother would enjoy, would help him miss you a bit less, and might have significant therapeutic effects for him?
It does sound like he will need something that's great fun AND educational to take the place of school--and to help him miss you less. And he can send you videotapes of himself learning these new skills!
Posted by: Taximom | June 22, 2012 at 05:37 PM
In case anyone is interested, OCD (repetitive) behavior has been linked to defective or damaged microglia. The microglia are the cells responsible for the brain's immunity. "Defective microglia output defective behavior" says Dr. Mario Capecchi, a geneticist/researcher from the University of Utah. Bone Marrow transplants in OCD mice have cured the OCD disorder. Maybe one day they can help humans with severe OCD.
Watch the full Interview with Dr. Capecchi, the scientist who discovered this below (fascinating):
http://www.ksl.com/?nid=148&sid=10947928
Posted by: Sarah | June 22, 2012 at 11:29 AM
We are seeing more and more stories like one from the Pioneer Press about Jake Brasch. It's all just more of the mystery of course. A million autistic children that no official can reasonable explain hasn't led to a demand for answers. When that population ages into adulthood the problems will increase. The cost will explode even more. Maybe then we'll stop pretending nothing is wrong.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | June 22, 2012 at 10:15 AM
Natalie you are an amazing young woman.
Posted by: Parent | June 22, 2012 at 09:48 AM
And reading your insightful thoughts helps me to understand our son, who is non-verbal, so much better.
I wish my son could look into the camera and smile as well as Anthony can...
Posted by: La Playa | June 22, 2012 at 08:55 AM
Dear Ms Palumbo,
When I read your previous article I though maybe "age 18" was a typo for "age 81" you have so much wisdom.
I empathize with the pressure you are under re deadlines.
Mary
Posted by: Mary W Maxwell | June 22, 2012 at 07:43 AM