Isolation, Loneliness, and the Angry Aspie? An Open Letter to the World and My Readers

While I have always tried to be truthful and revelatory when writing posts for this blog, in this post I am probably speaking with the most candor, bluntness, and with the rawest language I have used in a long time. I don’t see the need for a trigger warning, except that I am speaking about negative events and feelings I have been keeping private for a long time. Also, I will be using more profanity that my readers are used to seeing here on WWA. If that doesn’t scare you, read on. I should warn you that some of this may not read very cohesively and might seem like a very long rant, but I have had a need for a long time to say some of these things.

Isolation and Loneliness
When I was a little girl, I was a veritable chatterbox. Some of my earliest memories from around age five or six involve inundating other children, people my family knew, and my own parents with an explosion of words – what I was thinking or feeling, what I had been reading, things I’d seen earlier in the day that I thought were really marvelous, spectacular, or even beautiful, and so forth. I’m even guessing that some of these were lengthy descriptions of something related to my Aspie “special interests”. I remember Dad having to tell me to stop chatting and eat my food at dinner, as I would stop eating at some points and just start talking.

You probably wouldn’t think that the above description fits me if you were to meet me today. Yes, it is true that I can be very opinionated and expressive. In the past, I’ve not hesitated to “put myself out there” in terms of my poetry, my experiences with being an Aspie, or other things that interest me (anyone that’s chatted with me online about The Doors can attest to this). However, within the last few years I have been finding myself feeling more isolated and lonely than I have since I was a teenager in the small town in which I grew up, trying to negotiate the social landscape.

Believing that it was not wise to allow too much personal information about myself on the Internet, I chose not to speak of my experiences and feelings in this regard until now. In and of itself, this would not be a big deal. However, events were going on in mine and my fiancé’s lives that only worked to add distrust and paranoia to our already growing sense isolation. Our family was certainly of no help and in many cases, caused the very problems we were experiencing. Other events upon which I do not care to elaborate began to make us feel even less secure and more fearful. Although it may not seem obvious to those who know me from the autism and poetry communities, I was beginning to feel the need to close myself off and withdraw. And that, my friends, was where I began to lose the idea that I understood or had a true grasp on reality.

What does this have to do with autism or Asperger’s? Plenty. I’m sure there are many autistics or Aspies reading this right now who can identify with the feelings of isolation and loneliness of which I speak. While I fight for the emphasis of the positive things that autism can bring to our lives – our unique talents and gifts that enrich ourselves, our families, and our societies – I also believe in authenticity and honesty in revealing my personal and unique autistic experience. We need to be honest about the loneliness and isolation we may feel plus the difficulties we experience while navigating a neurotypical world. I figure it’s been long overdue for me to talk about this in my own life.

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J. Cole’s Lyrics Prove that More Understanding of Autism is Needed in the Black Community

There’s nothing like the smell of insults in the morning. I checked my Twitter feed and found this little gem:

I did some investigating about the lyrics which @AutisticPoet had referenced and found that they come from Drake’s song “Jodeci Freestyle”. In the last few days, J. Cole has certainly gotten the wrong kind of attention for these lyrics. There are many, myself included, who are upset at him because he chose to use the word “autistic” as an insult. “Autistic” by itself is merely a descriptive word that describes a person on the autism spectrum, or a person with autistic traits – unfortunately, the way in which J. Cole and others use the word can change its connotation to being negative, demeaning, and potentially dehumanizing.

Some in the autistic community are already taking action about this. Anna Kennedy and the Anti-Bullying Alliance have started a petition asking for an apology from J. Cole and Drake for the offensive lyrics. But I think this particular incident is indicative of a larger issue: the severe need for autism understanding and acceptance in the Black community.

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The Souls of Black Autistic Folk, Part I: An Introduction to Paul Robeson

And here is
Paul, the man made out of crossroads, seven or eight men
in one body. Call him Othello if you like. He is
voice-colored and fist-worn with Jim Crow’s black feathers
plastered to his knuckles. He has a sixteen track mind,
almost drowned by man-made lightning. He was a
serif font road sign: Poitier and Belafonte read him and
found their way to the stage. Here is Paul.
(an excerpt from my poem, “Tribe”)

I began this exploration of being African-American and autistic a few days ago by mentioning Paul Robeson, an individual where Black history and autism intersect. I had encountered the premise that Mr. Robeson had Asperger Syndrome in Norm Ledgin’s book Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models about two years ago and was immediately fascinated by it. While other African-American historical figures such as George Washington Carver and Benjamin Banneker are proposed to have been autistic, Robeson is the only African-American who to my knowledge has been analyzed for autistic traits using any sort of diagnostic criteria. And since my online journey began in late April 2010, I have noticed a distinct lack of the African-American presence in the online autism community. In an act of echolocation, I seek our presence to find, confirm, and perhaps reaffirm my own existence and reality as an African-American autistic. So Mr. Robeson, I have chosen you as my psychopomp for this journey.

Paul Robeson

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Autistics Speaking Day is November 1

Autistics Speaking Day is November 1. Check out the official blog: Autistic Speaking Day. They also have an FAQ and a list of participants for the 2011 event. If you’d like to participate, there is more information on the FAQ page.

You can also follow @AutisticsSpeak on Twitter.

If you’re not familiar with Autistics Speaking Day, then here is the post by Corina Becker at No Stereotypes Here that started it all.

And I will be participating both on this blog and at Raven’s Wing Poetry.

Autistic Adults Speak on Rethinking Autism

Please check out the new “Our Voice” page on Rethinking Autism’s website. Autistic adults have lent their voices — advice and insight — on what they would like parents of autistic children to know. I have a quote there as well, as well as Sharon daVanport and Tricia Kennedy of Autism Women’s Network and Kat Bjornstad. There appears to be a video in the works — stay tuned! (And have I mentioned that I think Rethinking Autism rocks?)

-Nicole

Poetry for Autistics Speaking Day

As I mentioned in this post, I will be sharing poetry as my way of speaking on Autistics Speaking Day. I invite you to read the following poems today:

Thank you everyone who is taking the time to read these poems today. We autistics *do* speak and communicate in various different ways. Hats off to everyone who is participating today — I will see you around the interwebs. And if you are sharing poetry today too, please don’t hesitate to post links to your work! You can leave them in the comments.

-Nicole

This Is Why We Do What We Do

For those of you who have been following this blog or have been around the Interwebs, you probably know by now about Autistics Speaking Day (for those who don’t know, check out the link and my last post about this.)

I received a comment about this which I thought was especially thoughtful and articulate from an autistic gentleman who counsels adults on the spectrum. I especially loved the last half of his post and thought, “This is why we speak out. This is why we are self-advocates. This is why we do what we do.”

Please read the comment from Jim below:

“I wholelly agree. I have autism as a diagnosis (since my 6th). I’m also a councellor specialized in coaching of adults with autism and a normal to high intelligence.

In my communication with clients, the main issues they speak of are:
* sexuality and the wish to have intimate relations.
* communication, and the difficulties in verbal face 2 face communication with non autists.
* giving meaning to their lives.
* wanting to be treated as equal, worthy citizens.

Some clients prefer speaking back to back, some prefer internet chat or e-mail, some prefer text…… very few prefer face to face contact or telephone voice contact.

modern communication media have increased the communicative capacities of persons with autism. Unfortuneately, the internet has also become a gathering place of non autists who choose to give meaning to their lives by emphasizing how pitifull we are, and advocating a cure for us.

Don’t fix us, we aren’t broken.
Don’t pity us, we aren’t pitifull.
Don’t change us, accept us as we are.

Cherish us.
Challenge us.
And watch what we do.

Try to connect with us.
And follow our lead.
Because we will innovate.
Because we have to innovate.
Because we don’t understand the standard.
So we’ll make our own.”

And maybe one of us will be foolish enough.
To show the rest of you the way to the stars…….”

Bravo!

Also, please check out these other amazing posts and pages about Autistics Speaking Day:

And if you find any other awesome or thought-provoking posts about it, PLEASE don’t hesitate to share them in the comments.

-Nicole