― Steve Maraboli, Life, the Truth, and Being Free
During our "managing behavior" autism parent-mentoring courses we learned that eighty-percent of the human population has some level of sensory dysfunction. Many of us are sensitive to bright light, or certain scents, or the feel of certain material on our bodies. Many of us wear glasses and hearing aids to correct our dysfunctions in order to achieve as near-to-normal visual and auditory sensory state that we can. Some of us don't like to be touched. A few of us have synesthesia - a cross sensory transfer of information, enabling some to taste smells and see the colors of sounds, and other cross sensory sensations.
Mozart |
For others, particularly autistic children, their sensory dysfunction can be a terror and anxiety inducing curse. The biggest and final realization I had that Nicholas had severe issues that needed attention was when we were trying to have dinner with friends at the Rainforest Cafe in Downtown Disney. As we entered the very popular restaurant, he wouldn't, and began having a classic autism meltdown. So, like typical parents we just picked him and carried him, thinking the fun ambiance and cool decor and lively colors and rainforest sounds would be enough of a fun distraction for him to settle in and enjoy being there.
Of course, the effect on him was the total opposite. It made it far, far worse. Popular meant overly crowded. Fun ambiance meant very loud. Cool decor and lively colors meant overwhelming visual stimulation. Rainforest sounds meant unfamiliar, dissonant noise. Looking back, he was absolutely terrified. Jill lifted him and carried him out, leaving our friends and their typical kids behind. As we walked back to the car, I could see his sobbing cries of despair gradually transforming to sighs and heaves of relief. Seeing that change in him, at that moment, changed me -- forever changed me.
He was three at the time, and had previously displayed discomfort and anxiety in certain situations, like entering into public restrooms or a new "place" or loud enclosed area, often leading to meltdowns. At the time, prior to the autism diagnosis and my autism parent training, I thought he was just having another tantrum because he was doing something he didn't want to do. I look back at that time and kick myself, wishing I could have, would have been more aware of what he was going through, instead of relying on what was modeled to me by my parents, which was to chastise, and make him deal.
That's how I was raised.
It worked, on me.
Do you want to hear a good one?
Elena has it worse..
She is, at times, an absolute prisoner to her sensory dysfunctions. She is extremely sensitive to sounds, particularly to police/emergency vehicle sirens. She hears them before anybody else can, picking out that sound within the cacophony of urban L.A. noise even if the siren is a mile away. It physically pains her, or so it seems. We don't really know. She's doesn't say much. We are only guessing it hurts. It looks like it does.
Here are two online "hearing test" that I think would be fun and interesting for all of you reading this to take, right now, before reading any further. Can you do that for me? One takes about two minutes, the other about five. It's fun.
Be careful though! Don't put the volume of your headphones or speakers up too loud. In fact, set them just below your normal setting. If you are a typical human, you are not going to hear a lot of the tones in the beginning. So don't put it louder! When you do hear one, you'll know.
The Audible Range of Human Hearing, 2 minutes
The Audible Range of Human Hearing, 5 Minutes
How did you do?
Nicholas can hear every tone on the two minute test - lowest to highest, easily. He is autistic and it's hard to know for certain. Still, when I played this he immediately asked "Dad, what's that noise?" when I wasn't hearing a thing. Turns out I am incredibly normal. Though I do think I've suffered hearing loss due to my years living in New York City, because, of all things, police and ambulance sirens.
I am trying to figure out a way to get Elena to listen to these. Honestly, I think she's is far more sensitive than him. I am convinced she hears way beyond what most typical humans do. She is plagued by unknown sounds -- unknown to us anyway. The fact the he is her brother has convinced me she isn't any different.
Full color sound spectrum of our very early universe |
The Sound of the "Big Bang"
There are moments in our lives where she is suffering and we can't figure why. I think it has to do with her hearing. I have found her lying on the floor in the bathroom, in the dark, moaning, biting down on a chew toy and plugging both of her ears. And there is no audible, unsettling sound that can be heard. No sirens. No aircraft. No motorcycles. No children screaming or babies shrieking. No electronic devices. Just normal every day sounds.
It is said that there are "sounds" in space, like the sound of the solar wind, and maybe she can hear those sounds, those echoes of space and time that we mere humans are not capable of hearing. I don't know. I am just speculating, rather imaginatively, of course. I don't know if we will ever know what she is experiencing, what she is hearing, and how it makes her feel. But that is what living with autism is like, for us. Often, particularly with Elena, it is just one big mystery...
On the flip side, she can hear a song for the first time and, if she likes it, can instantly harmonize in perfect pitch. And that's living with autism, too - realizing the strength within the apparent weakness, seeing the silver lining in that dark cloud of her reality, and figuring out a way, always trying to figure a way, to make it better.
Wendy shares how items like Cuddleuppets can be sensory comforter for autistic children on her Savette.com site, and it's definitely worth checking out. By all means, take a peek at these "pets" that work as soft sensory comforters at http://handi-dandi-crafts.com.
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