It took me 3 days to prepare myself to make that phone call. Phone calls remain my one major test as a person with Autism, my Kobayashi Maru. To most people, this sounds silly or trite, but for me it is real.
For those of us who struggle with communication, the phone can be confusing. Many unexpected factors and the inability to read voice tone means I am often stuck in a loop trying to interpret meaning. When the frequency of the voice changes, or their word pacing differs, my brain gets stuck on the pattern and loses the meaning. It is as if the words change to meaningless syllables and ticks. As a result, I miss much of what is said, making my answers sound off.
Speaking to people in person is a struggle too, but the phone adds an extra layer of problems. This is because all of my adaptive techniques to better understand people require context, body movement, and the energy off of the person to interpret them. Social skills training focuses on nonverbal cues, which are impossible to read on the phone. Somehow, NT people are able to use nuanced voice tones to make up for this. I am not.
Nevertheless, when people call me, I return their calls though it make take me a few days. They ask me questions, and I try to answer. Often times the conversation is awkward and has me breaking the flow constantly. I never know when they are done speaking, and if I pause too long, they speak again. Round and round we go, they want an answer I can’t give.
Talking on the phone is one of 100 issues I navigate daily. Learning to live with you, Phoenix, requires a highly tuned level of focus and the skillful application of my self-taught adaptation techniques. When I leave the house, I power on my mental systems to actively think about:
- Navigating around people while walking
- Filtering relevant sound from irrelevant sound
- Organizing neurological input and channeling it elsewhere so as not to be overstimulated (I compose music in my head from the sounds around me)
- Processing emotions often from the 2 or 3 weeks previous
- Counting so I don’t focus on the rhythm of my steps and get lost (please don’t ask me how many steps I take. I count to 10 and start over. It’s not an obsession, its an adaptation)
- Organizing my word muddle into comprehensive sentences (word muddle is what I call the constant internal monologue which is often just the rapid firing of vocabulary)
These are just a few things happening in my active mind while I am working through my day. This process is only calmed when I play music. True, most people process this stuff, but they do it passively, somewhere in the background, like muscle memory that no longer requires active thinking. My mind processes all of this as if I am learning about it for the first time.
It is hard, and requires so much energy, but it is worth it.
The need to be understood is desired by all humans, and I am no different there. But to understand others, to connect with them, that is center to my being.
I love people and I want them to feel welcomed on earth, loved by others, and when they talk I want to truly listen. To do this I must work to exhaustion everyday, but I can’t imagine living life in a void. It is nice when I make friends, but the most satisfaction I get is knowing I have given something to this amazing world. I like being useful, and being able to offer help to those who are suffering, To watch a lost human light up is amazing. Their energy goes from grey to bright colours, illuminating the air around them and creating the most beautiful music. It is the same magic as watching a broken Carousel come back to life.
When people are engaged, understood, and loved they glow, projecting their loving energy on everything around them. Sometimes all it takes is one person to say “I hear you.”
So, I get up everyday with the purpose of loving others. I fight the fires of you my dear Phoenix, and sometimes I channel your energy, and I count, and I walk, and I tame the inner dialogue and I write music.
But that phone call…that phone call was hard. And so were the many others before it when they said;
“I know you can’t really understand how I feel.”
“You’re so high-functioning so maybe learning empathy was easier for you.”
“Are you officially diagnosed with Autism? Maybe it isn’t Autism.”
“How can you teach my kid to survive in the normal world if you have the same problems?”
“Maybe you think the students understand you, but really they don’t. Maybe you need to believe they understand you.”
“I think sometimes you confuse your emotions. You think you are happy, but you don’t really feel happy.”
“My son has Asperger’s, not Autism. I can’t have people thinking he is retarded.”
“You have a special musical gift, but you aren’t a good fit for what we are doing.”
“Really? You already passed a background check at another school? Huh.” (Yes, someone actually said this to me after learning about my Autism. They were surprised that an Autistic person was qualified to work with children. I’ve been teaching 25 years.)
When I was a child, I enjoyed playing with a talking toy called Teddy Ruxpin. In one of his adventures, he travelled to a forest where the creatures there could change shape. They called themselves “Nothings” because they had no shape of their own.
They’re right. I am a nothing?
At least that is all they will ever see. And as long as they are stuck seeing me as a mindless, out of control, emotionless being that is a threat to public safety, then I will remain a Nothing.
My accomplishments as a professional are vast. I have won many awards in music, and taught hundreds of children to play music. But these accomplishments are constantly diminished by the inability of others to see past the diagnostic criteria. The worst part about being Nothing is being invisible.
These people who fight me, these people who see me as Nothing, they are not strangers. The general public has issues but they have actually grown a great deal on acceptance. It is disbelief in the Autistic community that is hurting me.
Some parents, professionals, and the many support organizations out there are fighting the wrong battles. The cure dialogue has dominated the industry to the point that Autistics coming into adulthood are not prepared to live a long life with Autism. While arguing over whether or not we should say “Autistic Person” or “Person with Autism” the big money organizations have hijacked the focus of research and therapy. While we are still arguing over vaccines and gluten, hundreds of children were forced to have bleach enemas to cure their guts of Autism.
They thought they were Nothings.
By the end of Teddy Ruxpins adventure to the forest, Teddy realizes that the Nothings are truly remarkable. He renamed them “Anythings” because they can be anything they want. There is a big difference between nothing and anything. To be nothing, I must be void of all life. To be anything, I must be overflowing with life. But I can see why some like to see people like me as nothings. To take nothing and make it something is a 100% improvement on an IEP report.
But if I am an Anything, I am already filled with potential. All I need is someone to say, “I hear you” and mean it. And if I am an Anything, and I choose to fight the fire for the love of others, then I have empathy.
If we are going to make any progress in the Autism community, we must stop trying to make something from nothing. As Teddy Ruxpin said, we’re not a Nothing, we are an Anything. How high we learn to fly is how wide we spread our wings.
Hear me. See me. I am an Anything.