You’re not really an ally

Trigger Warning for pro-Autism Speaks arguments, silencing of autistic people, and curebie rhetoric

You’re not really an ally if you ignore and silence Autistic people.  If, when you ask for followers to tell you the pros and the cons of Autism Speaks, you say that the Autistic people didn’t give you “rational” arguments, ignoring the fact that some of your followers triggered me into a near non-communicative state, well, you’re not an ally.  If you threaten to shut down the conversation if things get “out of hand”, but don’t shut it down for oppressive, bullying comments by the parents and only shut it down when a number of Autistics begin to argue against those points, you are not an ally.

Earlier this week on the Ink4Autism page, several Autistic adults posted a link to my “Why I am Against Autism Speaks” article that I posted on Tumblr just about a year ago.  Because of this, the page opened up discussion as to why Autism Speaks isn’t the best organization for supporting actual Autistic people. (Just a bit of background: Ink4Autism is a group of tattoo artists who are sending the proceeds of their inking to Autism Speaks for the month of April).  After about 12-14 hours of discussion, the discussion was closed.  You can read the entirety of the discussion at the link above, but I’m going to quote a few gems (leaving out the names, but the discussion is on a public page, so you can go to the above link for more).  

Could be internet trolls just trying to get our panties in a bunch….relentless little f’s

 

This was in response to why people sent information against Autism Speaks.  Because instead of listening to Autistic adults, we’re just “internet trolls”.

 people may not like the word “cure” but I am sorry. I want my son to speak, i want my son to not be looked at differently, I want my son to be able to tolerate noises, I want my son to be able to do alot of htings he cant do because of the autism in him. I love him with all my heart — we all love kids to death but if they can find a pill for people with depression, dementia, personality disorders, and so many other things to aleviate symptoms…maybe not “cure” it. Why not hope for one where a child can suddnely speak, a child can look you in the eyes and say I love you. May not want to say “cure” but……

 

Because accepting the child you have and helping to expand their abilities through support rather than trying to therapy them into looking like they’re neurotypical is just too much to ask? Because eye contact and verbal communication are the end all? 

 I think any organization that brings awareness about Autism is awesome. I do not want a cure for my son, but I sure would like to know what causes Autism and I would LOVE to spread awareness to others. Autism Speaks does that. My son is high functioning, but it is HARD, and I love that there is multiple resources available to me.

 

I find it interesting when parents bringing up the “cause” argument. Autism is not a disease.  It doesn’t need to be “treated” (except with respect, support and understanding).  So why do we need to know why it exists? I am certainly not anti-science. I just don’t see what good spending all this research money on a cause (and thereby developing a prenatal test to screen for autism) when there are plenty of autistic people here right now who could tell you what the issues we face are, and how to mitigate those.  I have a few ideas.  Ask me.

 One of the greatest achievements of Autism Speaks, which I haven’t seen mentioned yet, is their efforts to get proper insurance coverage in every state for autism therapies. They were essential in the fight for military families, who fall under federal law, to gain autism coverage as well. Without their lobbying and organization, none of this would have been possible.

 

This was a “pro”.  This was something they see as good.  This is something that they see as helping autistic children and their families.  Please read The Cost of Compliance is Unreasonable. I am not in favor of ABA, though I have utilized ABA therapists for educational purposes when our school district failed us.  I have been very careful about who I allow to interact with my child and how they do so.  Here are a few articles on why ABA isn’t a good thing (besides the one above, which if you haven’t read, you need to).

The Truth about ABA (references abuse and aversives). 

An Open Letter to Families (very explicit references to abuse)

What They Should be Talking About 

are you saying a parent can’t decide for a child and that we need to wait for a child to become an adult before a decision/contribution can be made? What about the non-verbal? Should they have an advocate speak on their behalf?

 

Oh Lordy.  This one got me.  No, a nonspeaking person does not necessarily need an advocate.  They may need assistive technology and support, but they don’t need someone to speak over them.

Listen, I’m all for folks expressing their opinions.  I promise.  I’d rather know what you really think, what you really believe than have you lie to me.  I want to hear different viewpoints, and trust me, my own have changed over the years.  The thing is, non-autistic parents of autistic children have their voices listened to almost constantly.  Autistic people have to fight every single day to get someone, anyone to listen to us.  Let me give you a sampling of some of the thoughts voiced after the discussion on the Ink4Autism page.  

 Pick the organization that fits you the best. Nothing is stopping the complainers from doing something to raise money for their org of choice. But I guess it’s easier to criticize the person trying to make a difference than it is to actually DO something. Keep up the good work and thank you raising awareness. After seeing your page, I got an autism tattoo last April. That tat has sparked many conversations that have made my Aspie’s life a little easier.

 

 

To the people who aren’t happy with that choice… Go and start your own page supporting the people you want to. If you’re giving money to a registered charity on the street you don’t tell the person holding the bucket ‘I’ll only support you if you change charity’. You either support them or you don’t, the choice is yours.

Back to Ink4Autism, you can’t please 100% of the people 100% of the time. What you can do is believe you are doing a great thing. Any work done towards raising awareness is amazing and helps our community. You are doing something for nothing and you’re doing it with grace and style. There aren’t many who are brave enough or driven enough to do what you do. Don’t let this bump in the road bring you down, it’ll pass, people will move on and you’ll still have something great in your life story.

 

 Don’t let these people get you down. You’re doing a great thing. And I’m very proud to be one of the artists doing work to help the cause. Keep up the good work.

 

And there we have the othering.  “These people.”  Instead of talking about us like we matter, we’re just “the other” who are asking for far too much or just stirring up trouble, rather than raising legitimate concerns about an organization that really does actually hurt us.  

 what really matters is that we are all at peace with our choices and decisions regarding our children and our support. Each and everyday I know I am doing exactly what I am suppose to be doing for my child and my community, thats a wonderful feeling.

 

Actually, it does matter.  It DOES matter which organization you choose.  Would you rather donate to an organization run by people who actually are Autistic, or an organization that seeks to eliminate people who are? The answer seems kind of simple to me, depending on what your aim is.  If your aim is to never again have another person like me born,who tells you that autism is a tragedy that should be prevented and that we need to “fix” autism (i.e., make them “look neurotypical”), well, I suppose then Autism Speaks is your best choice  If your aim is to support Autistic people who exist and live in your communities, I definitely think The Autistic Self Advocacy Network is your best bet.  

I wrote the following post on the Ink4Autism page the other night, and I continue to stand by it (please forgive grammar errors; I had been rendered nonverbal and was very close to complete meltdown mode).

Dear Ink4Autism, I want to tell you that I’m grateful that you’ve opened up the conversation about Autism Speaks. I am the author of the attached piece, which I see has been widely shared here. http://goldenheartedrose.tumblr.com/post/17644810872/why-i-am-against-autism-speaks-made-rebloggable-by

I want to say one thing, and that’s your words are one thing. Saying that you’re listening to autistic adults like myself is one thing. Your actions are another. I am certain that there are a good number of us who will see what comes of this discussion. It is one thing to allow autistic people to have a voice in the discussion (and really, it isn’t something that should be rare…mostly, we should lead the discussion).

If you or any of your followers think that we are self centered, trolls, or care only about ourselves, you’re dead wrong. We want to pave the way for a better future. For us, for our kids (I have two on the spectrum besides being autistic myself), for other autistic and otherwise disabled people. Are you aware that the rate of abuse of disabled people is 70%? And that autistic adults face an 85% unemployment/underemployment rate? This is now. This is what we face right now. Please consider that and I hope you drop your support for Autism Speaks.

 

What you do to actually help and support Autistic people who you are claiming to help and not simply their families to “deal with their burden” of having to deal with an autistic child is what speaks loudest to me as an Autistic person.  Not what you say you will do.  Not what your intent is.  What you are actually doing is what is important.  Think about that.  

 

On Stimming and why “quiet hands”ing an Autistic person is wrong

Trigger warnings for ableism, abusive therapy, prevention of communication, and self injurious behavior (at the very end)

I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.

When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.

I could potentially go on and on about how my hands help me connect to a world that is often baffling to me, but I prefer to keep this explanation short and simple. Stimming is communication. Did you get that? Let me say it again, until it sinks in. Stimming is communication.

I recall reading, around the time I began to learn ASL, about D/deaf individuals who were forced into becoming oral, who weren’t allowed to use sign language. I would say ASL rather than sign language, but I’m not all that certain that the practice was US-centric. I recall being horrified, but not being surprised, because boy, did that sound familiar.

I was lucky (?) enough to have not received my autism diagnosis in childhood. I was 30 when the diagnosis was confirmed (though a professional suggested it at age 28). This meant that like many of my peers, I was treated as though any issue I had, any difficulties were a result of laziness or stubborness, not because the world was difficult to live in. I was lucky to avoid ABA and most other therapy, but that didn’t save me from well-meaning teachers and relatives who stilled my fingers, my legs, my body, sometimes even physically restraining me during a meltdown (though they thought of them as “tantrums”). These weren’t bad people. I won’t excuse their behavior, but there was far less known about autism at the time, and I doubt the treatment I received would have changed if I had been diagnosed at age 4, 9, 16, whatever. It probably would have been worse. They focused more on me when they felt I was drawing too much attention – to them, to myself.

I don’t recall being publicly shamed for stimming until I was a teenager. It was on a road trip with my high school choral group, and we had just performed for a church service (did I mention we were a private Christian school?). Afterward, we were seated onstage. I couldn’t look at the minister because of the overhead lights, so I focused on my fingers. I rocked and flapped a bit. I didn’t even notice I was doing it until afterward, when my choral director pulled me aside and scolded me, telling me I was “disrespectful” and “an embarrassment” to my school. I prayed that the ground would swallow me up, and I spent the night in my hotel room crying and feeling ashamed. And for what? For finding a way to deal with my overstimulation? For failing to live up to NT standards?

So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.

Sincere thank you to Brenda Rothman @ Mama Be Good for the inspiration to write this.

Final note: Please understand that this is not talking about self injurious behavior and redirecting that. I used to repeatedly bang my head against the wall until I discovered shaking it rapidly side to side worked just as well, providing the same effect. Investigate the cause of SIB and work to redirect to keep your kids safe. But don’t hold them down.