Monthly Archives: April 2015

What Should Autism Acceptance Month Look Like?

As we near the end of April, I am reflecting on what Autism Acceptance Month should look like.  Let’s take the focus off of things like dehumanizing Autistic people by calling us burdens, tsunamis, epidemics and basically using the month to amp up the rhetoric of hate.  We need to re-frame this month from “awareness” to “acceptance” and use this time to really and truly recognize and honor Autistic pride and Autistic culture.  These things exist.  These things should be celebrated often.

This is an essay by F, a ten year old Autistic kid.  These are his thoughts on Autistic and Disability Pride:

My Thoughts on Disability Pride and Seeing Lydia Brown, by F:  

One day, I went to see Lydia Brown at Bellevue College.   Lydia Brown is Autistic and a student in college.  Lydia is an activist for disabilities.  They talked about Disability Pride and other stuff about disabilities.

They talked about how people view disabilities.  They talked about how some people think disability is something that needs to be fixed.  Some people see the absolute opposite and say disability is natural.   I think I am natural.

They also talked about pride.  I think Lydia would be in favor of how proud I am to be Disabled.

I think Disability Pride is pretty cool.  We can do stuff that people don’t even think of.

Autistic people can have the power to change the world.  I can change the world by inventing things.  Or I can be the next president.

People who say you should not be proud because you have a disability are total and complete jerks.  I want people to know that so those jerks think twice about what they say.

It is a lot good to be different.  I think I am different sometimes.  I am Disabled.

My favorite part about the talk was that I was allowed to move around during the talk.  Some people don’t like that, but they were allowing us to move around.  They were pretty accepting of the way people move around.

My mom showed me this quote by Neil Marcus:

“Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’.  Disability is an art.  It’s an ingenious way to live.” 

I think that means disability is not to be made fun of but to know that you have power.
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The Business of Breaking Children

by Kimberly Steiner

This post was originally published here

I spent some time with a friend one evening this week and one of the conversations we had surrounding her preschooler brought back so many memories of when my oldest child started school.

My friend’s child is vibrant, energetic, and brilliant. Her mind and body are very active and always running. She is all smiles and giggles. She is just an absolutely beautiful 4 yr. old child.

My friend was showing me her daughter’s school communication folder and I read some of the notes written about her child from the teacher. I recognized so many of the comments because I had read similar notes before with my own child just 12 years ago when he started school.

As I moved through some of the comments while looking at the green, yellow and red dots in her folder, I became very sad. I told my friend

“They are going to try to break her.”

My friend responded with a sarcastic tone

“I know, she’s not a good little solider”.

This child’s parents also believe the teacher has already labeled their daughter as one of the “problem students”, which is something I became painfully aware of myself as my own son journeyed through his elementary years.

My heart hurts to know there are children that enter into our public school system only to have their smiles stolen, their spirits broken, and their self esteem stripped away. It’s so painful to know that the main focus for these particular children will be their “behavior” and how they are not fitting into neat little boxes, instead of how to best support, accept and teach them.

Tears well up in my eyes to know they will be constantly told the way they are is not the way they should be, when there is absolutely nothing wrong with the way they are to begin with.

I have written about the fear of breaking my own son and vowing never to intentionally do so. I have seen the damage this can do to a child with my own son. I’ve shared numerous dialogues with many others who have witnessed or been through this same thing.

When your child is labeled the “problem child” in education, whether or not they are disabled, they are put under a microscope. Every.little.thing. is noticed. They get blamed for everything that goes wrong in an environment regardless if they did it or not.

Eventually (and rather quickly) other students catch on to this as well and tend to feed the fire the teacher started. It’s bullying perpetuated by adults, even though it’s not seen this way because it’s totally acceptable in society to treat *those* kids this way.

Unfortunately, I am aware of extreme disciplinary actions that tend to go with this territory: the referrals for petty things, the suspensions for nonviolent infractions (like not wearing a belt *gasp* OH! The horror!!! ), the phone calls, the conferences and even the threats of alternative learning placements for kids with “behavioral issues”. I know how things can get worse when you refuse to *prove* to the school that you’re parenting the way they think you should.

I’ve often felt like (and still feel) if I reported back to teachers that I completely humiliated my child by doing things that would cause long term damage, they would be satisfied. Satisfied, because then my child would be broken. After all, it’s much easier to manipulate broken pieces.

It’s like this: It’s pretty easy to break a square and put it back together as a triangle, only you’d have a piece missing. In children that piece represents their spirit, which includes : creativity, self esteem, and individuality.

Eccentricities & Introspection

Image is a comic strip with three sections side by side. The first section shows a dark skinned female teacher in from of a classroom full of triangles meant to represent students and one square. The speech bubble above her head reads “Johnny Square you are inappropriate, come here this instant” The second section shows the teacher knocking the top line of the square out with her hand, and those pieces falling , the speech bubble reads “There this should fix the problem” The third section shows the teacher standing beside a now cracked triangle that has the speech bubble *sniff* above it signifying sadness, to the left of the triangle on the floor are 3 straight lines scattered with RIP Johnny’s spirit written above it The speech bubble above the teachers head reads “Much better. You may return to your seat now Johnny.

These little squares are the kids deemed: defiant, noncompliant, oppositional, and just BAD. But, these are not violent, dangerous children I’m speaking of. These are the kids that go against the grain, they challenge authority, they think for them self, they know how to say “No”, and they ask questions.

Maybe they have trouble sitting still, talk too much, have trouble focusing, day dream, don’t talk enough, get bored quickly, or struggle in certain areas significantly and soar in others.

Perhaps they are extremely sensitive, they refuse to do things before they are ready to, they don’t show their work, they see busy work as ridiculous but they pass all the tests.

But, most importantly they refuse to conform just to make someone else’s job easy. Because let’s face it, that’s what compliance is about in school. We’re fed the lie that it is to get them ready for the real world. However, the real world is nothing like school.

If you’re a teacher reading this, please understand… I know your job is hard, I couldn’t do it. You became a teacher to teach, not wade through the bureaucratic bullshit that gets in the way of you teaching what needs to be taught.

You have little support sometimes from your own administration, you are bound by federal and state mandates to teach things a certain way, in a certain amount of time. You’re forced to shove standardized testing prep down our children’s throats when you’d rather be teaching them applicable skills.

I know.

So, in order to do the job the government demands from you, you have to demand our children be, as my friend stated, good little soldiers.

My friend and I both agree… All we want is for our children to be HAPPY, successful and left unbroken. And we ask, how? Is that even possible anymore in public education? I’m not even sure.

“I Don’t Want Your Awareness”

This was first posted on Ollibean and is written by Amy Sequenzia.

I don’t want Autism Awareness. Actually, I fear Autism Awareness because it only makes the world fear, hate and ignore us, one blue light, one puzzle piece at a time.

Autism Acceptance. Everybody has something  to offer and do contribute when supported. Amy Sequenzia on Ollibean

It is April again. The month when Autistic anxiety increase is directly proportional to the “autism awareness” marketing strategy.

I am not being hyperbolic or snarky.

In April, sales of blue lights and puzzle pieces, appointments with therapists that promise to make Autistics “better”, interviews with celebrities that “support autism”, the parade of “experts” on our TV’s, views of articles – in newspapers, magazines and websites – about us (always without us) and about our “deficits”, increase.

All this comes attached with the Autism Awareness Month reminder.

All this also brings the stigma, the fear mongering, the bias, the pity porn, the hate towards Autistics.

All this elevates the voices of non-autistic parents (often times martyred parents) and professionals, while silencing our voices.

Our anxiety increases, we use most of our energy to send this simple
message: “we are here, we are human, listen to us”.

It is extra draining in April because “awareness” is so loud and scary, we need a lot more strength. The organizations that raise money by using fear of our neurology, double down on the hateful rhetoric. It stings harder, it cuts deeper, it hurts more.

Awareness says: Here is your child. Unfortunately this is a defective child.

Maybe, if you work with this kid hard enough, you will be able to have at least a tiny taste of the joys of parenthood. You will need a lot of money. I am sorry for you. Good luck, don’t expect too much.
Acceptance says: Here is your child! Congratulations!

Awareness says: This is the list of all of your child’s deficits. Good luck, I am so sorry.

Acceptance says: Here is a list of things your child might do differently. Since Autistic brains process things differently, the best approach is to listen to, and observe the child, making necessary accommodations for her to achieve full potential.

Awareness says: Your child cannot understand human feelings. Your non-verbal child will never say “I love you”

Acceptance says: Your child processes feelings in a way that might seem odd, but the feelings are real. The love received will come back, sometimes in a non-speaking way.

Awareness says: Correct those behaviors! Fix this mess! Acceptance says: Behavior is communication. Understand and respect.

Awareness says: Don’t trust the adults who “have autism”. They are too “high-functioning” to understanding the heartbreaking struggles of “real” autism.
Acceptance says: Everyone struggles. Seek your community/your child’s
community for input.

Awareness says: Those “low-functioning” people “with autism” cause too much pain. Burdens! Poor parents!
Acceptance says: Everybody has something to offer and do contribute when supported.

Awareness says: Beware of autism! It will cause havoc in our lives! All these people! How tragic!
Acceptance says: Diversity! Neurodiversity enriches our lives.

Awareness says: Donate to the awesome organizations that have all the pretty puzzle pieces and all the pretty blue lights!
Acceptance says: Support, include everyone!

See the difference?

Are you Aware of us, or are you striving to Accept us?

Because the two are almost opposite concepts.

– See more at: http://ollibean.com/2015/04/02/i-dont-want-your-awareness/#sthash.yrMSspKO.dpuf

Guest Post: I don’t want your autism awareness; I want autism acceptance.

This was originally published by Morenike Onaiwu here.

I don’t want your autism awareness; I want autism acceptance.

Today is “World Autism Awareness Day.” While I think awareness is important, I ask you, as a Autistic mom to Autistic and non-Autistic kids: What value is awareness without acceptance? We have been “aware” of HIV for decades and yet people still choose to fear and stigmatize those living with it (case in point: recent HIV criminalization bills). We have been “aware” that women make ~ $0.64 to every $1.00 a man makes since I was a child and it hasn’t improved. We have been “aware” of sexism, or racism, of anti-Muslim sentiments, of anti-Semitism, of homophobia, of transphobia, of child marriage, of child abuse, of intimate partner violence, of sexual assault. As a society we are “aware” of all of those things. What substantive changes have come as a result of this “awareness?” Not as much as there should be.

I am a Christian (and proud of it). One well known quote in my community is “Faith without works is dead.” Whether you are a Christian or not, I think you can understand the value of that statement; if you profess to be a follower of Christ but your actions and words are anything but Christlike, then your faith is of little value to anyone but maybe yourself. Today I say to you AWARENESS WITHOUT ACCEPTANCE IS DEAD. IT doesn’t help me. It doesn’t help my children. It doesn’t help my community. Whatever you are “aware” of is probably not accurate anyway. How much money we cost? How much of a “burden” we are on everyone? How much we “need” to be “cured” of our “horrible” condition? How important it is to find the “cause” so we can counsel mothers to be about their pregnancy “options” (AKA convince them to abort unborn babies believed to be Autistic, as is currently done with other conditions diagnosed in utero)? How Autistic females supposedly don’t exist (or rarely do), hence the need to “light it up blue” because blue is a “boy” color for a “boy” diagnosis? That’s your “Autism Awareness?”

Being “aware” of autism is the reason that this story is in the news today – on World Autism Awareness Day, no less. This little boy and his mother live in Australia. They are law-abiding individuals, but since the child has been diagnosed as being on the autism spectrum, he is perceived as a likely “future burden” on taxpayers, so they will probably be deported back to the Philippines. Because of course there’s no way he could ever contribute anything to society, right? He’s Autistic, so all he does is drain resources and wreak lives. That’s what we do. There’s more of us than “pediatric AIDS, childhood cancers, and juvenile diabetes all put together – right Autism Speaks? We are these confusing, troublesome puzzle pieces that no one can figure out?

You can keep your awareness. I want acceptance. Acceptance or nothing. Don’t be aware of me. Accept me.

I ask you to #WalkInRed, #ToneItDownTaupe, #LightItUpGold, or anything but light it up blue. The only thing that guves me the “blues” today is the negative way my people are perceived. We are not “locked away” in our minds. We’re right here…just different. Accept us. Please.

A is for Acceptance

When E Was 2 by Megen Porter

Megen wrote a beautiful poem about her love for her Autistic daughter and her journey towards acceptance:

 

 

When E was 2

 
 

Before E was 2

Autism was tragic

My baby was beautiful

 
 

Before E was 2

Autism was an epidemic

My baby’s laugh was (is) pure joy

 
 

Before E was 2

Autism was stealing people’s children

My baby was right here, telling me all the letters of the alphabet

 
 

Before E was 2

Autism was a soulless burden

My baby was chubby love incarnate

 
 

After E was 2

Autism was someone else

My baby was delightfully unique

 
 

After E was 2

Autism was coming

My baby was too good for labels

 
 

After E was 2

Autism was here

My baby is Autistic

 
 

Autism is Beautiful.

 
 

White text reads:  "My baby is Autistic Autism is beautiful" -Megen Porter text is on purple textured background

White text reads: “My baby is Autistic
Autism is beautiful” -Megen Porter
text is on purple textured background