A family’s journey through autism.
There’s no denying that autism parents are quite familiar with the difficulties and challenges raising an autistic child brings forth. Having said that, many autism parents can agree with this: never underestimate the knowledge of an autistic child.
Bryan Jepson and his wife, Laurie, definitely didn’t underestimate their sons, Aaron and Austin, both of whom are autistic and have their individual set of challenges. Although Austin is completely non-verbal, he authored Passing the Moon, a collection of poems and short-stories.
Bryan, an emergency medicine physician and founder of Children’s Biomedical Center of Utah, is a published author of two books, Changing the Course of Autism, and more recently, The Record Player, the story of a family navigating the challenges of raising a non-verbal autistic child, helping him to discover his own unique voice.
We sat down with Bryan to talk about his sons, the books and life.
You have two sons with autism, Aaron and Austin. Let’s start with Aaron, how old was he when he was diagnosed with autism?
Aaron was diagnosed officially at age 3, We started seeing signs of problems probably a year to 6 months before that. We figured it out on our own before getting the formal diagnosis but it was still tough to hear those words. The psychiatrist told us that he was moderate to low functioning and would probably end up in an institution. Well, we weren’t ready to let that happen without a big fight and that started our journey through all kinds of treatments starting with ABA but including dietary interventions, biomedical treatment, ST/OT, etc. Aaron is still very impacted by autism but is really doing pretty well in general. His life has changed dramatically since he learned how to type out his inner thoughts. Our preconceived ideas about autism and what is going on inside the brains of these kids changed right along with that. Aaron is a loving, empathetic, self-motivated young man and is determined to make a difference in the world by sharing his story with others.
You and your wife adopted Austin at age 7, did you have any reservations about raising another child with special needs?
Absolutely. In fact, we had discussed many times after Aaron was diagnosed about having another biological child of our own. But, at the time, it was just too painful to think about, especially watching your child deteriorate in front of your eyes and not feeling like there was anything you could do to stop it. When we heard about Austin, it felt different to us because he was already autistic and we didn’t have that emotional baggage that came along with his diagnosis. He had such a difficult and unfair beginning to his life and, though he was severely impacted by autism as well as the sequelae of the physical and emotional neglect that he suffered as a young child, we felt that we could help him and if nothing else, provide for him a safe and loving home environment.
What is daily life like with your sons?
Every day is still a challengeBoth boys have some awesome writing skills and we try to take time to type with them every day. But, they are both still very autistic in terms of behaviors, especially Austin. Their lives are often driven by OCD and anxiety and Austin has frequent aggressive tantrums which can be quite destructive. They are both full-grown young men and when they get angry or upset, it is a lot more difficult to manage compared to when they were little boys. They are very different in personality, motivation level and general pace of movement.
Aaron has lots of energy and really loves to be outside doing active things. In fact, he and I just completed a full marathon last month. Austin is low energy and we have a hard time getting him going sometimes. So, taking them together to do activities can be challenging and my wife, Laurie, and I just usually have to divide and conquer.
They are both still dependent on us for most functional daily activities so our lives tend to revolve around taking care of them. It can get pretty tiring and frequently discouraging, to be honest. That being said, they both having amazing talents and we get a lot of satisfaction in watching those develop.
Seeing as both of your sons are non-verbal, what is their main method of communication?
Austin is completely non-verbal. We have never heard him say a word. We tried to teach him sign language but that was unsuccessful. We used a picture-exchange system for a while but that only worked for a few simple things. We eventually found Soma Mukhopadhyay at HALO (Helping Autism through Learning and Outreach) in Austin, Texas (halo-soma.org). Using a method that she developed called the Rapid Prompting Method, she taught her non-verbal son how to communicate by writing. She starts with a stencil board and a pencil. The kids place the pencil through the letter on the stencil board and she writes it down on a piece of paper until they have constructed a sentence. She helps support their hand at first and then fades that away with time. We started taking Austin there and he soon was having complete conversations, answering complex questions and creating stories. He would never do it with us at home so I was a bit skeptical at first, even when I observed him doing it. But, we eventually figured out a different method for him at home that worked for us. We first used a computer keyboard that we disconnected from the computer. I held his hand for support and he moved it toward the letters. We were able to eventually transition to an I-pad. That is how we communicate now.
Aaron has some language but it is not very functional. He can tell us the things that he wants to do using simple sentences but that’s about it. He could never have a more in-depth conversation. We didn’t think about taking him to Soma because he did have some language and didn’t know if it would work for him. But once we started taking him, he picked it up quickly and soon let us know what was really going on inside his head. He frequently tells us that what comes out of his mouth and what he is thinking in his brain are not the same thing so to not listen to his words, but to read what he is typing. He has given us a lot of insight into what it is like to have autism, at least for him. Many of his writings are found at our family blog, jepsonfiles.com. They are very insightful and sometimes painful to read because we never knew how much he was “trapped” inside his own mind.
Austin wrote a book of poems and short-stories entitled “Passing by the Moon.” When did you discover Austin had a flare for writing?
Not long after Austin started working with Soma, she asked him if he would like to write a story. He proceeded to write a very simple but clever little fable. We were dumbfounded that he could do that on the spot. One year, after he had started writing on the I-pad, I asked if he would like to write a poem for his mom for Mother’s Day. Again, he immediately sat down and wrote a simple but beautiful poem for her. As he got better at typing, he wanted to start writing more poems. One after another, he would write these profound and technical poems that were so deep and meaningful on so many levels. Laurie and I would just shake our head sometimes in disbelief about what was coming out of his brain. He is so clever and observant about things that we never would have known that he was paying attention to. His poetry just touches people deeply when they read it. His stories are lighter but also very entertaining and witty. I couldn’t wait to compile enough of his writings to publish and share them with the world.
Do you have a favourite poem you’d like to share?
I honestly have a hard time choosing a favorite because they are all special to me in different ways. But, I’ll share the title poem called Passing by the Moon.
Passing by the Moon
August 24, 2016
Every night I dream
Making a trip through space
How would I know
And could I decide
A path that took me far
From life on Earth?
Aren’t we supposed
To be grounded and safe,
Covered and protected
By an atmosphere?
Small as I am
And so inconsequential,
Would I simply disappear
Like a shooting star?
Which planet would become
A suitable new home,
Where life makes sense
For people like me?
All we would need
And all we would want
And all we would ask for
Is a tiny piece of the universe,
For a language and a purpose
And a common understanding
And a chance to create
Somewhere out there,
A few light years away,
An autism world
Is waiting for me.
Austin isn’t the only writer in the family, you wrote a novel, “The Record Player,” can you tell us about it?
The Record Player is a story that I have had in my head for many years. I am a physician and for about 8 years, I focused my career on helping children with autism by treating their biomedical needs. Over those years, I saw many children improve dramatically and some even dropped their diagnosis. But, I also saw many that continued to struggle significantly into adulthood. I knew on a personal level how difficult it was to raise a child with autism, with all of the hope, despair, emotion, fear, and joy that goes along with that. I also felt the disappointment when my own son didn’t “recover” and continued to have significant struggles. There are so many books out there about how to treat autism and about successful recovery stories. But, I think so many of us face a different reality.
I thought it was important to tell a story of a family that had a child that continued to struggle but, in spite of that, was able to share his own unique set of talents with the world. Although this book is not an autobiography, my wife and I are now starting to experience some of those same things as our boys have discovered hidden talents and abilities that are inspiring others.
Without giving away the story, I think that The Record Player will touch you on a personal level if you have any connection with autism and hopefully will inspire you that anything is possible and to never underestimate these awesome kids.
Is your hope to raise autism awareness?
My hope is that my boys can be reminders to everyone, both those personally affected by autism and maybe more importantly those that are not, that individuals with special needs have great capacity to teach, to inspire, to touch lives and to make major contributions to this world. We must not overlook that potential, no matter how severely disabled they appear to be, and to never give up in finding ways to help them succeed, even if it takes years or decades.
Any parting thoughts you’d like to share?
I thought I’d leave this question for Austin.
He wrote this: “I hope that you all will read my book. Poetry is the best way for me to communicate my thoughts and feelings. Autism is not fun. The hardest part for me is that people just assume that if you can’t speak that you must be retarded. I love showing people that this is not true. People can be cruel sometimes and not really mean it. Just remember that we can hear you. Anyway, I hope that you enjoy my poetry.”
To learn more about the Jepson family, you can visit their website at www.jepsonfiles.com