Learn Your Special Education Laws, Special Education Rights, and Share IEP Goal Ideas

Aug 06
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by Dennise Goldberg

Last week I wrote a blog entitled, How we change the world is as important as the actual change where I challenged both Parents raising children with Autism and Self-Advocates to think about how they approach the current civil rights movement for individuals living with a disability.  I asked them to consider Martin Luther King, Jr. as their role model and gave advice on how to approach each other in a calm, thoughtful manner.  I sent this blog to Mama Be Good via twitter and waited for a response.  Although she never officially responded she wrote her own blog post two days later entitled, Good Trouble: Autism and the Neurodiversity Movement.  In it she writes:

They do not have the power that comes with being the majority.

And because they do not have that power, they must protest.  They must rally.  They must complain.  They must demand attention.  They must demand respect.  They must demand change.

It is not our place to tell them to watch their language.  To change themselves.  To respect us first.  To stop complaining.  This stage of the neurodiversity rights movement is the radical protest stage.  It's radical in its demands.  It's a protest by nature.  Yes, legislation, the ADA, helps a little.  It protects some rights.  It ensures some opportunities.  But it hasn't fixed everything.  So the movement proceeds forward to address the many forms of subtle discrimination, the outright torture (like the Judge Rotenberg Center and the bleach treatments), and the malignment of autistics that still exists in everything from education to services to the media.

Maybe I’m being a little egocentric but I got the feeling her writing was in response to my earlier blog.  She never mentions my blog or even sent me this response so I will never know for sure but it feels that way to me.  The reason I sent her my original post is I honestly wanted to hear her opinion and I think everyone should read her entire blog and not just the excerpt I posted above.  After reading this blog I more clearly understood her position, her rationale for those positions and her feeling and emotions behind those positions.  Ah, there is the rub, I understand her feelings and emotions behind her positions.  It doesn’t really even matter whether I agree or disagree with her but I felt her emotions and I understand her message.  That is called active listening or in this case active reading.

Wikipedia defines active listening as “a communication technique that requires the listener to understand, interpret, and evaluate what (s)he hears. The ability to listen actively can improve personal relationships through reducing conflicts, strengthening cooperation, and fostering understanding.” Active listening requires the individual’s full attention taking into account not only what the other person is saying but also the emotion they are conveying.  I made a point in my original blog that we need to keep an open mind in order to learn something new.  After reading Mama Be Good’s blog I had a better understanding of why the movement was progressing the way it is but I hadn’t had a change of heart just yet.

Then A Funny thing happened on the way to the theater.  I started to follow a conversation on Karla’s ASD Facebook page.  Karla has autism and also raised children on the autism spectrum.  In this thread a few individuals were challenging Karla’s opinion in the same manner that I wrote about last week that bothers me so much.  Finally, Karla just flat out said, my mind doesn’t work like that, I don’t understand what message you are trying to convey and I’m asking for an accommodation from you on this point.  I’m paraphrasing since I can’t find the actual comment anymore but that was the message.  Boy was I open to hearing her message.

So has my mind been changed since last week?  Let’s say it’s been altered or reshaped to include the fact that accommodations should always be included in the discussion.  Let’s look at the definition of Active listening again:

It requires the individual’s full attention taking into account not only what the other person is saying but also the emotion they are conveying.

Active listening is hard for all of us but is increasingly difficult for individual’s living with Autism.  Reading another person’s emotions is a very tough concept and even more difficult when all of the interactions are taking place on a facebook page by reading the other person’s comments.  I still believe that the best method to bring around change is to do it in a thoughtful, meaningful way but I now also believe that when disagreements happen it’s our job as neurotypicals to provide some accommodations during the discussion and make sure our message is being presented clearly and understood.

Theory of Mind for NT Folks provided by Karla's ASD Page

Update:  Karla from Karla's ASD page was gracious enough to let me include the graphic above.  She created this graphic after the conversation on her page that I mention in this blog.  When I was writing this blog I could not find the link to that conversation but she pointed me in the right direction.  That discussion can be found here.


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3 Responses to “Active Listening, Mama Be Good and Karla’s ASD Page”

  1. My daughter, Tracie, once wrote an essay and letter to Dr. Judith Miller – the respected autism specialist. In her essay Tracie wished that people would be willing to visit an autistic mind. That they might find it an interesting place to visit. Judi agreed! Sometimes the help people are giving, dare I say forcing in some circumstances, ends up limiting the autistic person. Not understanding that doesn’t lessen barriers.

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  2. Karla has a true gift for communicating complex ideas in ways many people can understand together. I’m so grateful for her graphics. Grateful, too, for your post, Dennise.

    To me, it comes down to respecting each other’s personhood – and being willing to learn from one another about what we need.

    If you’ve met one person….you’ve me one person.

    Our intent and willingness to learn (as you mentioned in your “How we change the world…” post – is fundamentally important.

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  3. I’m very familiar with the blog you referenced, and I too see and understand the message. I think one of the problems I have is that their advocacy group represents a very small group of the spectrum. A group that can communicate their needs and wants. There are many others on the spectrum that are in the more “severe” range, who cannot speak or use a computer, who cannot communicate their needs or wants, and who require constant care throughout their lives.

    While I completely agree with the premise that autistics are entitled to rights, the issue I have is when parents of autistic children that are more severe in their needs complain about the lack of support they receive, or the feeling of being overwhelmed with caregiving, then they are often blasted by self-advocates. There is a failure to see the bigger picture, that many autistics require an enormous amount of care. If we rally for equal rights for autistics, without also rallying for more in-home and community supports for families, then we are not doing justice for many on the spectrum that need that assistance.

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