Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Monday, April 23, 2012

My Response to a List on theautismproject.org

Link to the original list: 

http://theautismproject.org/autismunderstanding.php

10 Things the Person with Autism Wishes you Knew 

My Response:  I personally don't like to be described as a ``person with autism," but as an autistic. Not the main point of this response, but most of the autistics I personally know share this preference.

(excerpts from Ellen Notbohm)

1. Behavior is communication
All behavior occurs for a reason.  It tells you even when my words can’t, how I perceive what is happening around me.  Negative behavior interferes with my learning process.  But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.
Start by believing this:  I truly DO want to learn to interact appropriately.  Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs, or don’t understand what is expected of me.  Look beyond the behavior to find the source of my resistance.  Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, setting.  Over time, a pattern may emerge.

My Response: They're totally right that just interrupting these behaviors isn't enough. And they're totally right that behavior is communication, and that you need to see what is causing resistance. But you also need to be sure that the behavior is actually negative as opposed to self-regulatory. Stimming, for example, is not negative, and calling it inappropriate in general is discriminating against us. (Actually dangerous stims should be replaced, but things like hand-flapping and spinning and rocking and humming are not bad behaviors and shouldn't be stopped. If trying to stop those is what leads to resistance, well, that's a case where the resistance means ``You shouldn't be trying to make me do this." I'm not sure where the autism project stands on this, but I wanted to make sure there was no room for misinterpretation.

2. Never assume anything  
Without factual backup, an assumption is only a guess.  I may not know or understand the rules.  I may have heard the instructions but not understood them.  Maybe I knew it yesterday but can’t retrieve it today. 

Are you sure I really know how to do what is being asked?  Are you sure I actually know the rules?   Stick with me through enough repetitions of a task to where I feel competent.  I may need more practice than others.  

My Response: I also might not have picked up on your sarcasm. I also may have taken you too literally. You might have phrased your statement as a request, at which point I answered ``No." It wasn't an attitude. YOU ASKED A QUESTION. I ANSWERED. But yeah, everything they said could totally be the difficulty. 

3. Look for sensory issues first
A lot of my resistant behaviors come from sensory discomfort.  One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me.  The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement.  Or, maybe I need to sit closer to you; I don’t understand what you are saying because there are too many noises “in between” – that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.  Ask the occupational therapist for sensory-friendly ideas for the classroom.

My Response: Don't wait for ``resistant behaviors" before looking for sensory issues. If you know what sensory issues I have, look as we enter. If I spot one and say something, fix it before I have problems with it. If I look uncomfortable, look for sensory issues. If I suddenly go non-verbal or it looks like I might be nearing overload, meltdown, or shutdown, sensory issues should be the first thing to check for, especially if I was ``fine a minute ago" and/or just changed environments.

4. Provide me with a break to allow for self-regulation before I need it.  A quiet, carpeted corner of the room with some pillows, books, and headphones allows me a place to go to regroup when I feel overwhelmed, but isn’t so far physically removed that I won’t be able to rejoin the activity flow of the room smoothly.

My Response: Can I go berserk on everyone who doesn't know this? Also, do not force me to take said break if I don't want it or delay said break because it isn't ``time." Make the space available.  Feel free to suggest using it if I look like I need it. If I say no, don't push it. If I ask or up and move to the space, go with it.




5. Tell me what you want me to do in the positive rather than the imperative
“You left a mess by the sink!” is merely a statement of fact to me.  I’m not able to infer that what you really mean is “Please rinse out your paint cup and put the paper towels in the trash.”  Don’t make me guess or have to figure out what I should do.

My Response: Seriously? How many times do we need to tell you that you need to TELL ME what you want me to do. There are times when you're dropping a hint that someone not autistic would miss, and then you get mad when we miss it. There are also times when it is something like the sink being messy, and if I weren't autistic I'd have gotten what you were saying. But I AM autistic. I take things literally. A statement of fact does not tell me what to do.

 
6. Keep your expectations reasonable
That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me.  Maybe I’d be better off helping the school secretary put together the newsletter.

My Response: Looks like a repeat of the sensory issues thing to me. That all-school assembly is a sensory overload waiting to happen.

 
7. Help me transition between activities
It takes me a little longer to motor plan moving from one activity to the next.  Give me a five minute warning and a two minute warning before an activity changes – and build a few extra minutes in on your end to compensate.  A simple clock fact or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.

My Response: Not all of us need this, but some of us do. If this has been an issue with a specific autistic, do so for that specific autistic.

 
8. Don’t make a bad situation worse
I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment.  I truly don’t mean to meld down, show anger, or otherwise disrupt your classroom.  You can help me get over it more quickly by not responding with inflammatory behavior of your own.  Beware of these responses that prolong rather than resolve a crisis:
  • Raising your voice: I hear the yelling and shrieking but not the words.
  • Mocking or mimicking me: Sarcasm, insults or name-calling will not embarrass me.
  • Making unsubstantiated accusations: I will argue with you.
  • Invoking a double standard.
  • Comparing me to a sibling or other peer.
  • Bringing up previous or unrelated events: I will get confused.
My Response: This sounds specific to a child in a classroom, but it totally isn't. Also, sarcasm, insults, and name calling DO embarrass me. Embarrassing me just isn't going to help you. The previous/unrelated events might not confuse me. Specific to me, I can tell you that it won't. But I will dismiss it as irrelevant to the current issue, and I will do so to your face. That's not going to help de-escalate.

9. Criticize gently
Be honest – how good are you at accepting “constructive” criticism?  The maturity and self-confidence to be able to do that may be light years beyond my abilities right now.  Should you never correct me?  Of course not.  But do it kindly so that I actually hear you.  Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.

Please!  Never, ever try to impose discipline or correction when I am angry, distraught, over-stimulated, shut down, anxious, or otherwise emotionally unable to interact with you.  Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me.  Help me pin down the feelings that triggered the behavior.

Practice or role-play.  Show me a better way to handle the situation next time.  A storyboard, photo essay, or social story helps.  Expect to role play lots over time.  There are no one-time fixes.  And when I do get it right “next time,” tell me right away.  It helps me if you yourself are modeling proper behavior fore responding to criticism.

My Response: I don't think that's autism-specific. Some of this is specific to kids.  Also, you need to tell me exactly what it is that I did wrong. You need to do this telling me when I am capable of interacting with you. While I am melting down is not the time for much of anything besides possibly helping me end the meltdown faster.

10. Offer real choices – and only real choices
Don’t offer me a choice or ask a “do you want …?” question unless you are willing to accept no for an answer.  “No” may be my honest answer to “Do you want to read out loud now?” or “Would you like to share paints with William?”  It’s hard for me to trust you when choices are not really choices at all.
You take for granted the amazing number of choices you have on a daily basis that provide you with control over your life.  For me, choices are much more limited, which is why it can be harder to feel confident about myself.  Providing me with frequent choices helps me become more engaged.  I also need to understand that there will be times when you can’t give me choices.  Just explain it to me; “I give you lots of choices but this time it needs to be an adult choice.”

My Response: As an autistic adult who lives at university, my choices are just as many as yours, and you should be aware that I am accustomed to making my own choices. If you start trying to make my choices for me because of the fact that I am autistic, I will not deal with you. Until an apology for doing so is received, I will continue to refuse to deal with you. It's called respect. Use it. For autistic kids, give just as many choices as you would give to a kid who was not autistic. But yes, the way you phrase things (don't offer it as a choice or ask a do you want if you aren't offering it) is totally true.

The last word: believe.  Believe that you can make a difference for me.  It requires accommodation and adaptation, but autism is an open-ended disability.  There are no inherent limits on achievement.  Encourage me to be everything I can be so that I can stay the course long after our time together.

My Response: It's only necessarily a disability because of our societal ideas of what ability is. Using alternative communication devices isn't disabling unless society says it is. Stimming isn't unacceptable unless society says it is. Maybe society shouldn't say either of those things. Maybe some of us mostly just needs acceptance of the fact that there is more than one way to be able. (Doing that does require accommodation and adaptation, and we do still need supports. We do still want to be functional. I just don't think that things like being table-ready are the most important skills to learn.)

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