Editor’s note: This is a true story. No allegory intended.
Youngest took a summer internship at our local zoo. It’s been two weeks and every day we learn more about the animals she is responsible for supervising. Today, even though giraffes and lions are her assigned area, she was helping out in the American porcupine exhibit.
One of the porcupines (there are 2) recently had surgery and is on “vet watch.” This entails a keeper having eyes on the porcupine all day long. It turns out that this particular porcupine likes to stick his paws in crevices. And he gets stuck…alot. Her job was to get him unstuck.
The porcupine also enjoys climbing trees like a sloth instead of like a porcupine. He gets stuck about three feet off the ground. The keeper is supposed to go tap on his claws to remind him to move. Hold that thought….
As Youngest is sitting in the rain, making sure the porcupine doesn’t get stuck, a zoo patron comments to his young son about the “intern in the wild.” Youngest wears a shirt that boldly states “INTERN” across the back. Another patron comes by and asks her if she’s worried about “being shot” by quills. Youngest, in her nicest voice, informs the patron that according to the information sign RIGHT THERE, porcupines do not actually shoot quills. Besides, she has heavy-duty work gloves just in case she has to handle the porcupine.
As youngest relates this story, she keeps referring to the porcupine as “naughty.” Hence, the naughty porcupine. Ah, the joys of the animal kingdom.
There’s so much about Autism that creates empty space. You want friends, but being social is damn near impossible. You want to work, but landing that job requires some skills you don’t know how to express. You want company, but the thought of a “party” is draining. You want people to value YOU, but they can’t see past the diagnosis.
Other things make me feel like I live in a different age. Autism $peaks was founded in 2005, 8 years after my son was diagnosed. It was never part of our “awareness” as they seek to catch vulnerable parents right after diagnosis. ABA started flexing its wings in 2004, although it’s been around since 1960 as a way to rehabilitate social deviants.Hopefully that gets a few of you thinking.
Just today on social media, I was following a conversation about all the therapies and equipment being provided to families with children on the Spectrum. And I have to wonder, with all this support, how come Autism $peaks isn’t obsolete?
And yes, I do wonder how things would be different if my children’s (and mine) needs had been addressed instead of being punished. Tactile defensiveness? You’ll outgrow it with exposure. Social awkwardness? Things change with time. Stimming? You’ll need to stop that to fit in. Here’s a substitute action until you learn to quit.
Now I understand some of the bitterness I feel towards people. I’m looking at “haves” and “have-nots” while wondering if it really makes a difference. If you “have” all the latest and greatest shiny things, will you eventually exceed expectations because of the shiny things or because you can “pass?” Did we miss out because we made do with what we had, that didn’t include any shiny things?
I guess we’ll have some answers 10 years from now when this group of Autistic children are grown and starting their adult lives. Did they benefit or are things still the same? Are they better at “passing” or have they reached acceptance both within themselves and their communities?
Food for thought……
Why not? Everyone seems to be tacking the word “privilege” onto descriptors. I have “white privilege” because of the color of my skin. I have “economic privilege” because I have a roof over my head and food on the table. The one common thread is I was “given” these labels by people who were different from me.
So, Autism privilege. The current discussions in the communities I frequent are of two minds. First, there are Autistics. All kinds of Autistics from across the spectrum. Autistics writing and speaking up. We’re just spilling out of neat little boxes where others put us.
The second kind are usually parents. They have kids on the spectrum, but are not themselves Autistic. You might see them referred to as “Autism parents,” usually by their social group. Some of these parents are pretty convinced that their child’s Autism is what entitles them to Autism privilege. A name which they gladly accept for all their sacrifices.
See the difference? Autistics speaking for themselves in any fashion are a threat to deep-rooted beliefs. But “sacrificing” yourself by raising your child gives you privilege. Seems a bit backward to me. Why would I choose to listen to those who claim privilege over those that are Autistics? Well, I don’t.
Autism $peaks seeks to drown out Autistic voices. They are claiming privilege on the basis that Autistics are lesser beings that require handholding. And the public buys it because obviously A$ knows a lot about Autism. That’s the voice of privilege. Not experience.
Listen to the voices. Hear that Autistics feel marginalized by organizations and people who survive by claiming a privilege that is not theirs to claim. Change your perspective and you just might change someone’s world.
In the colloquial terms we are familiar with, a guinea pig is something you try new things on. It’s a catch-all phrase that people use to indicate they are trying new things. Let’s be guinea pigs by going to a new restaurant. Let’s be guinea pigs by getting makeovers. Let’s be guinea pigs by reading books outside our comfort zone.
I get it. What I don’t get is when people make their kids into guinea pigs. I’m not talking about offering up peas instead of carrots. I’m talking about therapy. Did you know that Applied Behavior Analysis has been in use since 1960? That it’s popularity picked up in the 1970s? The process had been used primarily on people with “social maladjustment.” It was reborn in the 1990s as a means of “helping” people adjust to society.
In less than 20 years, ABA has gone from a fringe treatment for social maladjustment to a widely accepted “therapy” for people with Autism. The focus is almost exclusively on exterminating unwanted behaviors. Coping skills aren’t the focus. Rather, learning to be “normal” is the desired outcome.
While teaching your child that they must fit in a box to be “normal?” Who decided that boxes were necessary. People are criticized for allowing their children to explore the “not normal” parts of life. If it makes me happy to flap, spin or stim in another way, what difference does it make? Why does your normal have to be my normal?
Guinea pig. Therapists may or may not really understand ABA. They do “understand” that behavior must be changed to “normal” to measure success. Therapists try many different approaches to accomplish this goal. And you are a guinea pig throughout treatment as they find ways to homogenize people.
How boring. Diversity is what keeps us discovering, exploring and learning. Embrace acceptance of things that differ from your expectations. We are all unique. We all have things to offer. Acceptance makes us better human beings.
The truth is in
The proof is when
You hear your heart start asking,
“What’s my motivation?”~ The Newsboys, Shine
That’s it. What’s your motivation for putting your child into therapy? What’s your motivation for changing a light bulb to blue? What’s your motivation for listening to people who push for you to wish your child had never been born?
You may think Autism $peaks is a great resource. They’re researching Autism, so they must be okay. They are really researching ways to remove Autism from the gene pool. Autism $peaks does not care about Autistics. They care about money. Which many people seem happy to freely give to an organization that devotes less than 4% of your donation to helping families. The rest is spent telling you that your loved one is a burden that you shouldn’t have to bear.
If that is truly your motivation, then follow the blue. If your loved one is only lovable if they are “Autism-free” then perhaps you need to really look at yourself and why you feel that way. The more you follow the blue, the more likely you are to miss the love offered to you.
That is the tragedy here. It’s not Autism. It’s a group of people who think Autism should be seen entirely as a burden. Listen to Autistic voices instead of voices that want you to believe disability defines a person.
One of the most common phrases I hear this time of year is that “Autistics need to speak up.” If you want to be heard, speak louder. We are speaking. We can be found at the United Nations. We can be found on social media. We can be found on main-stream media, although a certain organization drowns out our voices with their expensive, slick campaign. The campaign that so many people give to and follow while at the same time proclaiming that Autistics don’t speak.
We do speak. We talk to you verbally. We talk to you using assistive technology. We talk to you through behavior when our words escape us. We are talking loudly. We wish you would listen as closely as you listen to A$.
Gotcha! I bet you were thinking it’s another blog on words. Nope. I mean this literally. In a nice way of course.
I have some texture sensitivities. Certain foods just make me gag. I know some people like smooth. Others like crunchy. It really depends on what works for you. One of the “newer” therapies is called “feeding therapy” where a therapist works with you to desensitize and add more variety to your diet. I can honestly say that particular therapy rubs me wrong. Years ago, you got feeding therapy after having a stroke or some other major event that impaired your swallowing. Now, I just think of a kid who already has so little control over their lives being forced to learn to eat “acceptable foods.”
So, teach your kiddo some manners like spitting into a napkin, not saying “ew, gross” or some other words. Teach them that trying a new food doesn’t make it part of the menu of they don’t like it. I know it can be maddening when your child only chooses 5 foods. You’ll both make it…I promise. Those 5 choices will change and most likely expand. You may not even notice the changes. Give yourself or your loved one some choice in what they eat. You might just discover it was really a disagreement about control and not actual food avoidance.