Autism Awareness

Thomas Sanders, Ari Cricks,
Emma Donahue and Adam Boryszewski

Last Friday, I had the immense pleasure of participating in Thomas Sanders’ Q&A video for Autism Awareness Month. I was part of a panel of three people involved in the autistic community. We asked Thomas multiple-choice questions to see how much he knew about autism, with the goal of educating him and his viewers.

Since the 3-hour conversation is being squished into 18 minutes for the video, and because there exist people (including some in the autism community) who are unable or unwilling to watch things of that length, I’ve decided to write a series of posts about autism, drawing from research, the discussion we had last Friday, and my own personal experience.

[UPDATE] The video was released on Thomas Sanders’ YouTube channel on the 29^th of April 2017. Watch below!

https://m.youtube.com/watch?v=vE0R-Gw_GEA&feature=youtu.be

Here are some of the basics of autistic sensitivities you may not fully understand.

Sound

When I hear a sound, it’s always loud. No matter how quiet something is, even if it’s a pencil scratching paper, it is always some degree of loud to me. In middle and high school, my way of dealing with this was to hide during lunch and any time there were loud noises. I would hide under the table in math class, in the conference room in the library, or in the storage closet during gym. When there was no alternative, I would sit in the corner covering my ears and rocking.

Needless to say, my peers and superiors didn’t take this very well. They would often try to touch me during this time of sensory overload (either to get my attention or to move me) or think I was upset and try to console or comfort me. But all I needed was isolation and some earplugs! For many years I used foam plugs that muffled the sound and made it hard for me to hear the full spectrum of an orchestra or even conversations.  My dad recently got me a pair of Eargasm earplugs that reduce the volume but still allow me to hear sounds clearly and sharply.  

Stimming

Anytime I am trying to think or focus, particularly when I try to tune out outside sensory input, I will stim. People always seem to be concerned when I shake my head for minutes at a time or I blink rapidly, but that’s just what my body does. At different times of the day I have to do different things. When I do the dishes, for example, I always listen to the soundtrack from Heathers the Musical, starting with the second song.

Some stimming behaviours can be harmful, like teeth-grinding or skin-picking. I've found a great solution for low-profile, non-harmful stimming: stim toys from stimtastic.co . My favourite is the black gem-shaped chewy necklace (https://www.stimtastic.co/stim-jewelry/chewable-gem-beads-necklace). Instead of stimming by chewing on a pen or grinding my teeth, I have something discreet to munch on that fits my taste (pun intended). I plan on getting a black spinner ring as well.

Neurotypical (non-autistic) people can sometimes be annoyed with autistic people due to stimming to the point of distraction, but trust me, trying to stop us will make things worse and dysfunctional. It’s not something we choose to do. It’s something our brain MAKES us do. Everybody stims sometimes to a certain extent (for example having a restless leg), so remember that for autistic people it’s just to an extreme.

Touch

For the most part, touching an autistic person is not okay. Remember I mentioned that when I hid from sounds people would try to touch me and that physically stopping an autistic person from stimming makes it worse? Touching an autistic person can send them into an involuntary episode of physical and verbal flailing. From the outside, it looks like a tantrum.

One time in 6^th grade, I got in a food fight, and it was all fun and games until I got a banana thrown in my eye. I freaked out, and when I tried to go to the nurse and get my eye looked at (it was swollen shut) and file a report on the incident, an administrator tried to stop me by physically restraining me. I involuntarily started yelling and throwing my arms around and hit her square in the face. I could have gotten expelled for that involuntary reflex. Thankfully that administrator recognised there was no intent on my part of hurting her and that she shouldn’t have touched me. But we did have to schedule a parent conference and talk through it all.  So yeah, don’t touch an autistic person without permission.

Taste/olfactory

Another thing that can really mess with an autistic person is olfaction, or smell and taste. When someone orders food and when it comes they beg someone to take it away or throw it away from them, it is usually because they can’t stand the smell or taste. Autistic people tend to be hypersensitive to smell or taste, and anything that is too strong in any direction – perfume or sewage for examples – can make it nearly impossible for an autistic person to breathe.

When I was in fourth grade, every Thursday my teacher, Miss Duckworth, would have us take two lemon Lysol wipes and a pink air freshener bottle and clean our desks inside and out. Every time I did it, I would begin to choke and have to be sent outside. Eventually, we figured out that I couldn’t be around fragrances without choking on them. So now I use fragrance-free products as much as possible. My favorite way to freshen the air without toxicity is to use essential oils in a diffuser. Grapefruit and tangerine are my favourite oils. Young Living is the best brand to use since they don't add any surprise ingredients that can cause a bad reaction. Fill out the Contact Form to the right for more information about essential oils. 

Texture

The final thing that I will address today is texture. Touching things with certain textures just feels wrong. The thought of touching velvet, for example, makes me nauseous, and if I touch it I have to immediately stroke something that is a good texture, and wash my hands and cover them with lotion. I can’t wear normal t-shirts because it feels like they are grating on my skin.

It’s not just the texture of clothing or other external objects. Autistic people can also be made extremely uncomfortable by the textures of foods or their own body. For example, I love the taste of mushrooms, but putting a mushroom in my mouth makes me gag. I just can’t handle the sliminess. Eating crab the one time I did was a similar experience. No matter how much butter and garlic I used to cover the King Crab on my plate, I couldn’t swallow that texture.

Anxiety and Sensory Overload

Not everyone on the autistic spectrum has difficulty with all of these senses, or to a debilitating degree. Just like autism itself, hypersensitivity is a spectrum. But all of the sensory input can lead to sensory overload, a state where hypersensitivity gets even worse and everything around a person hurts. Every smell and light source and texture is just too much. The best way I've found to deal with this and other anxieties is to be completely isolated in a dark quiet room, similar to the way one would deal with a migraine. To numb the anxiety I use a roller-bottle with lavender, orange, cedarwood, and vetiver oils in coconut oil. 

I’ve told you a little bit about many different things today. Over the course of the next few weeks, I will tell you more about some of the things I’ve covered, as well as some things that I haven’t. In the meantime, stay tuned! And while you're waiting for the updated post of the forthcoming video, here's a really good poem a friend of Deidra's wrote for Autism Awareness month.

Light it up blue?  by Melinda Coppola

Autism Awareness month is April, 
World Autism Awareness Day, April 2
and, in case the day lacks color, 
(as if any day with Autism in it could be dull),
the mysterious Namers-of-Days-and-months
have painted it a medium sort of blue.

I wonder who decided this; 
and how it was chosen,
this perfectly ordinary second day,
and weighted with a long middle
moniker, like a fish
plucked out of the ocean,
tagged and thrown back
into what used to be
a perfectly ordinary fourth month.
And why a color? Why this one?
Does Autism look like blue 
to outsiders? 

Pondering this, I roll up my sleeves,
prep the tub for her,
the one who turned my life on its ear,
she who makes me laugh,
she who wears me out,
she who is a master of repetition,
she who defies reduction,
who is multi-colored, many-hued.

She who is unaware of your awareness,
who, if asked, would mutter “ Not interesting”,
she who needs help with a bath
but can take a thing
and spell it backwards,
report to the air/no one in particular
how many redundant vowels it contains,
and how her lunch reminds her
of Home on the Range.

She who hears songs in color,
who does not stay in her bed all night,
who is frightened of beads with holes,
she who knows if there’s a day to be aware of
it’s the fourth Friday in February,
which is called Ate Baby Kate, 
and that means bad,
and therefore must be worried about
many months in advance,
she who can sing whole CDs in order,
she who tells me thirty times a day
that I’m a girl ( in case I forget)

She who needs more than I have
who gives more than I need
who has more than you think,
who is more, so much more,
than you give her credit for.

And so, dear you-who-aren’t-aware,
please allow me to set the record straight.
Autism is multi-colored,
and awareness is every single day,
and no blue second day of any fourth month
will ever matter more
than your interest, your kindness, your respect,
your willingness to help us challenge
a world that would reduce anyone
to an assumption
or a label
in one color
on one day
within one month.

-Melinda Coppola

From http://www.melindacoppola.com/2017/04/03/light-it-up-blue/