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.

Tuesday, May 28, 2013

To Carly

Trigger Warning: References to a whole lot of forms of ableism and "not like my child."


I want you to know: You're not a beacon of false hope. Anyone who tells you so misunderstands a lot of things, including what "false hope" even means. To be false hope, you would have to be something other than who you have claimed to be- a person who found communication by typing, and having figured it out, was able to show your competence. That's real hope- that others like us really are competent and it just takes more work to find the way we best communicate. Speech isn't always it, even when we are capable of it.
They also suspect that you are an exception. In that you found AAC all by yourself and people helped you with it after you started it, you may be unusual- in many cases, the key point was when someone else presumed our competence and taught us. But even that, I can tell you that you're not alone. My aunt came up with her own AAC as a small child- she carried a Sears catalog, back in the days when those had everything in them, and she would point to words and pictures. She did eventually learn to speak, but the idea that a person could find AAC themselves, or even invent their own? Not as unusual as people often think.
Or that intellectual disability is common and that the hope people see in you ignores that- false again. Intellectual disability may be common, or communication issues may be relevant, or the tests may be designed in ways that do not mesh well with the way we think. (There was a study where we apparently do much better on Raven's than on standard IQ tests, and Raven's is generally seen as the better/more advanced measure, so at least one of the latter two is almost certainly part of the story.) But does it really matter (asked by someone given an IQ of 25)? Competence and intellectual disability aren't mutually exclusive anyways. Intellectual disability doesn't mean "can't make choices about own life" or "can't set own goals" or "can't have relationships with others" or "can't ever communicate." If all they can see from your story is "oh hey, Carly's in college and I don't think my kid can do that so she's not like my child," they are missing most of it. Communication>college.
And maybe, just maybe, they're viewing your life as a source of "inspiration" rather than as a life in its own right. People have a tendency to do that to people with disabilities of all flavors. If all they see you as is a beacon of false hope, they are probably doing that to you. I do not know how to fix that, or even if it is possible to make them understand what they are doing and why it is wrong, but sometimes just knowing that the things people do to you are wrong, why they are wrong, and that you don't deserve it can help.
I won't pretend I agree with you on everything. I won't pretend I like all the people you work with (I have a whole "Problem with Autism Speaks" tag, I don't think pretending is going to work well...) But I will recognize that personal disagreements with you and your choices (not mine, yours) do not mean I somehow think the way you are treated is OK. It's not OK to reduce your life to a beacon of false hope, or use your name as a derisive word for hearing that communication breakthroughs are possible. It's not OK for a grown adult to bully a young woman with a disability for being herself and allowing the world to watch. And it's not your fault that someone did that to you.

7 comments:

  1. It is always worth noting that there are humans behind the names and people behind the organizations; many who care and have compassion about other people and are worthy of dignity and respect, no matter how much we may disagree with opinions.

    Life is to short, to judge people based on label alone.

    You are showing compassion for that "ideal" in this post, as well.

    Thank you for that, if for no other reason that you are human. :)

    ReplyDelete
    Replies
    1. And OBTW, your Blog was just added to a list for:

      Yes, That Too for Unique "Hyperlexic" Perspective

      at number 32 in no particular order, other than Alphabetical.

      (I didn't think you would find the term "Hyperlexic" offensive, but if you do, please let me know.)

      "30+ Safe Sites for People on the Spectrum and People Who Love Them :)!"

      http://katiemiaaghogday.blogspot.com/2013/05/30-safe-sites-for-people-on-autism.html

      Delete
  2. Carly is not a beacon of false hope. It is a *common* and not an exceptional autistic experience for us to find one mode of communication more usable than another one.

    Sudden leaps in communication abilities also happen. They happened for me in studying theater and debate. They can happen for other people with access to technology, hard work, or just plain time. They are not miracles, and they are not magic--they just feel like it sometimes.

    ReplyDelete
    Replies
    1. Sorry to Interrupt, Chavisory, (and Yes,That Too), but I just wanted you to know I am adding you too, as a Jewel I was hoping to come across again. :)

      Under Chavisory's Notebook for Unique Perspective.

      That makes 33.

      Back on topic, I love Carly too. She is an inspiration. I would rather present the fact that her type of Autism is Unique, too.

      There are language delays and challenges specific to Hyperlexia that I share with Yes, That Too, and maybe you.

      Additionally, there are language delays associated with Pragmatic Language Impairment as another Learning Difference in Communication too.

      And then there is the type of language regression at 18 to 24 months specific to males with Abnormal Brain Growth, that females with regression rarely share.

      Along with maybe 10's or even 100's of other related conditions associated with language development delay and/or regression, which in part results in what the DSM5 now describes as a challenge in Reciprocal Social Communication.

      Instead of comparing Carley to someone unless, in any scenario, on the spectrum, it is more fact oriented to view the facts.

      Temple Grandin has a brain anomaly viewed in Discover Magazine, where left hemisphere is challenged over right. That too, is one of potentially thousands of other brain anomalies in degree and structure leading to what the DSM5 describes as that reciprocal social communication challenge, measured only in behavior.

      And finally, over fifty percent of individuals diagnosed with Asperger's syndrome, along with my Sister, have symptoms meeting Non-Verbal Learning Disorder, where speaking is often early, picture thinking and math are often challenging, and Lesions are often associated in the Right Hemisphere as a challenge there, instead of the Left.

      They are more likely to navigate the world in words rather than pictures, as visual-spatial skills may be challenged, too.

      When people are more fully "armed" with the facts, there is no "reason" to make those type of comparisons or respond to them in "ill affect", as one can highlight the differences that are evidenced in fact. :)

      It is part of Autism Awareness that is vital for Acceptance.

      Delete
  3. You are right, Alyssa. It is not okay for an adult to shame Carly. She's only 18. She's a teenager. She found her voice. She should be celebrated.

    ReplyDelete

I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.