by Lonnie Pacelli
My fiction book, The Lawless One and the End of Time, has four main characters who meet at age 14 in Naples, Italy and all grow into globally-recognized figures. One of the characters, Bert Winn, was fascinated with history. He loved the concreteness of historical facts; they either happened or they didn’t. He met and fell in love with Laura, a math major he met in college. He graduated college with a Ph.D. in history and became an acclaimed professor. Bert and Laura married and had a son they named JT. The Winn family became internet celebrities and millions of people subscribed to their online video blog. Subscribers loved to hear their messages of fact, inspiration, and challenge. Their message? An unvarnished, inspirational view of life with Autism Spectrum Disorder.
Bert started showing signs of autism at eighteen months with speech delay, difficulty maintaining eye contact, and a dislike for being cuddled. As Bert grew, he and his mother developed strategies for how to accommodate some of Bert’s sensitivities, such as a “beach ball kiss,” in which an imaginary beach ball filled space between them when they kissed hello and goodbye. Laura too had sensory issues, particularly with clothing fabrics. The two of them learned to cope with their sensitivities through the years, so they became normal for them. It also felt normal for their son, JT, to be on the autism spectrum. They didn’t view themselves as people to be pitied, but used the opportunity to help others understand the world of autism and how people on the spectrum could thrive just like anyone. Their story educated and inspired millions and gave those affected by autism hope.
The story of Bert, Laura, and JT were heavily influenced by my wife Patty’s and my experience raising our son Trevor. He was diagnosed with Autism Spectrum Disorder at age five (the clinical diagnosis was Pervasive Developmental Disorder, Not Otherwise Specified or PDD-NOS) back in 1998. At the time, autism wasn’t well known and our only exposure to it was Dustin Hoffman’s character in Rainman. We had no idea what the future had in store for us as a family. Would he ever graduate high school? Would he drive? Would he have relationships? Through the years Trevor amazed us with what he was able to do and how he learned to cope with his autism. Today he is a college graduate who lives on his own, drives, works, and has an active social life. Yes, he has challenges that will be with him for the rest of his life. But we learned an important lesson with Trevor; the moment we underestimated him he proved us wrong.
You may have your own perceptions of people with disabilities, whether it be physical (paralysis), cognitive (autism), present at birth (Down Syndrome) or related to an injury (amputation due to an accident). Your perceptions may be due to personal experience, observing a friend or loved one, or what you see in the media. Your perceptions may be inclusive or biased. Only you can decide.
So, what’s your action? Educate yourself. Disability:IN, American Association of People with Disabilities, Special Books by Special Kids, Autism Speaks, Center for Disease Control and Prevention’s Disability and Health Overview, and Northwest Center are some great resources to help you better understand people with disabilities. Do your own web searches, just make sure the information you’re taking in is from credible sources.
Take the time to learn more about disabilities and focus less on the “dis” and more on “abilities.” Oh, and if you want to learn more about Bert, Laura and JT’s story, check out The Lawless One and the End of Time.
By Trevor Pacelli
Far too frequently I get the idea that because I have slower speech and a lack of understanding towards other people, I can’t be of significant help to them. But this Memorial Day, I was proven wrong about myself.
You see, I was sitting on a park bench in a forested area near my home. All seemed fine, until I suddenly started hearing high-pitched screaming and crying. I ran over to see the source of the mayhem, and I saw two women who clearly didn’t know each other, one with two huskies, and one sitting on the ground, a smaller black dog held tight in her arms. I asked what happened, and they told me that one of the larger dogs had bitten the smaller dog on the neck. They told me to call 911, which I did. The problem though? These types of emergency services don’t help dogs. The woman with the larger dogs said that she would help out the smaller dog, but needed to go back home to get something. So as she was walking away, she shouted out her name and phone number to me before I could get a chance to get it right. By the time she was gone, the other woman, I’ll call her Kayla, realized that she was just trying to escape the situation. Then her injured dog, I’ll call her LBD (Little Black Dog), ran out of her arms and into one of the bushes, her front left leg clearly damaged. Kayla started to freak out, as she took it as LBD losing trust in her as an owner.
Kayla’s next mode of action was to take LBD to the pet hospital, which in our circumstance, was at PetSmart. She asked me to come with her as a witness, and I quickly said yes. I got into her car, and the whole time, she was still sobbing and panicking over thinking she was a terrible dog owner. I kept affirming to her that she did nothing wrong, from what I could tell from the situation. So after a drive that felt longer than it really was, Kayla brought LBD into the hospital wing of PetSmart. I sensed her trauma, so as we were sitting in the waiting room for the doctor to come and check up on LBD, all I did was pat her back to let her know that she was not alone.
Then the doctor came to check up on LBD, which meant he had to take her away from Kayla, definitely not easy for her to accept. Thus, we waited as they checked on the damage done by LBD, and at this point, I was mainly repeating to Kayla that she did nothing wrong, and that it would be unlikely that LBD would dislike her now. But Kayla was more concerned about LBD being able to go for walks, after facing such trauma with a larger dog. Then the doctor came out, and he told her that LBD had quite a bit of swelling and damage to her back and front left legs, and that they would have to take some X-rays. I decided it was good to ask how the trauma would affect a small animal like LBD, and I believe from what I can remember that he said it would likely be traumatic at first, but would heal over time.
At this point, Kayla decided that she didn’t need me around anymore, as she had called her boyfriend to come over and help her out. So she agreed to give me a ride home as she waited for the X-rays to develop. As we got into Kayla’s car, I then asked her, “Can I pray for you?” Now, I am of strong Christian belief, so praying is a part of my way of helping others in need. So I said a quick prayer for Kayla, and she drove me home. As she dropped me off, she was ever so thankful that I was there to help her. Later that day, I got a text message from Kayla (I gave her my phone number in case she needed my eye witness later on) giving the status report on LBD. She even texted me a video/status report that I assume she sent out to her other Facebook friends, of LBD on her car seat. I texted back saying I was going to continue praying for her.
I learned something very important about myself from all this. Just because I have autism does not mean I can never help somebody in need. Nobody has to do anything elaborate to help somebody else, it only requires giving your time to let somebody else know that they’re not alone. It’s not a matter of how good of a speaker I was, I understood the situation and knew ahead of time how to verbalize what happened, so talking my way through it just came naturally.
So again, autism does not mean incapable to love or show a random act of kindness. It doesn’t even mean a limited ability to help others. Anyone can aid anyone in need, all it takes is a simple reminder that we are not alone.
By Trevor Pacelli
“Cheer up! Stay positive! Always look on the bright side of life!” Wherever we go, at home, at school, or at work, we are always pressed upon by our peers and media to keep up a grin as a solution to hard times. Anything besides happy, we are expected to think that something is wrong with us. If we get angry, we get called aggressive. If we are disgusted, we get called judgmental. If we are fearful, we get called cowardly. If we are sad, we get called negative.
What the Disney Pixar movie Inside Out teaches us is that we have multiple emotions for a reason: each one makes up who we are, that means we should not feel ashamed to express tears of sorrow when necessary. No matter what our surroundings try to tell us, it is not always a good thing to keep a happy face. It’s even more important that we make sure people with ASD understand this.
With every situation of moving or switching schools, all sorts of emotional upsets overwhelm a savant’s mind like an overfilled glass continuing to be filled.
Six-Word Lessons on Female Asperger Syndrome, Lesson #39: Change is Devastating for an Aspie.
Six-Word Lessons on Growing Up Autistic, Lesson #72: Moving Starts a Whole New Chapter.
Although I was one of the lucky few who lived in the same house all his life up until graduating high school, I still had to go through uncomfortable major change when transitioning from one school up to the next. The types of thoughts going through my head included: How much harder will the work be? Will I be in a class with this person? What do I do if I get lost in the building? How mean will the teachers be?
But my problem was more with how people reacted to my concern. When I expressed my concern about going to a new school, the most common response I heard was “deal with it, it will be fine.” It did not help me at all in my worries. It leads me into the one thing that I dislike the most about peoples’ reaction to another’s distress: their lack of understanding.
My parents could also say they have been a little guilty of this too, but far too often I have been flatly told how I should feel, which was always to be happy, without much regard to how I was feeling in the present state. At the time, I didn’t know better, but growing up allowed me and my parents to realize that when you have autism, you can’t just auto-switch from one emotion to another. It takes time and a quiet attitude.
I was even bad at faking an emotion. All through my childhood, if I was upset about something, no matter my situation, I made sure everybody knew. I could not even just fake a positive attitude, because it would have been too much work for me to handle. That said, I’m better at it now, but there was a time, especially in my teen years, when my emotions were expressed exactly how I was thinking them.
Six-Word Lessons for Autism Friendly Workplaces, Lesson #83: Being Blunt is Part of Autism.
Because of this, I want to stress that the best way to help somebody with autism is to show compassion: let them know that you fully understand what they’re going through.
Six-Word Lessons for Dads with Autistic Kids, Lesson #64: Tell Him That You Love Him.
A soft, understanding tone will always calm the storm of the most distressed mind, and even more importantly, let the other know that you are here to meet their needs. The child’s priorities may not be in the right place when they request your attention, but nevertheless, it evidences all the more how much they need you to open your ears and your heart to their problems.
If there is a specific movie you’d like to see reviewed, please email me at Trevor@TrevorsViewOnHollywood.com for your recommendations.
Have a great weekend, and happy watching!
Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.