Category Archives: @The Huffington Post

Imagine What it is Like to be Autistic

The last 72 hours has seen a whirlwind of activity regarding the Autism Positivity 2012 Flash Blog and those words “I wish I didn’t have Aspergers.”  It has been incredible to witness.  To recap  –  A group of bloggers devoted days of their time and energy to come up with and create the Autism Positivity Flash Blog.  They then reached out to all the bloggers they knew, asking for each to contribute something.  New contributions were posted every 15 minutes on the last day of April, with more trickling in after that. I don’t know what the total ended up being, but it was well over 115 contributions.  As a result of their efforts, a whole community of Autistics, Aspergers, Parents of Autistics and Parents of Aspergers were galvanized and inspired to come together in support of any Autist who has ever felt – marginalized, less than, misunderstood, ignored or alone – even if for only a minute.  It was an incredible show of strength in numbers, of people working together, of a diverse and vibrant community uniting and reaching out to another (anonymous) human being.

Yesterday, Genisa, the person who typed those words commented on the piece I’d submitted to Huffington Post.   Because the Huffington Post limits comments to 250 words, you have to break your comment down into segments and submit each segment, hoping they’ll be published in the order you submitted.  As both Genisa and I found out, this was not what actually occurred.  HuffPo moderates all comments that come in and because of the massive numbers of comments they are (I’m sure) quickly overwhelmed with content they cannot keep up with.  So Part 2 of my 3-part response was never published at all, and part 5 of Genisa’s comment wasn’t either.  It was incredibly frustrating and I felt somewhat horrified when I realized that people were going to read just the last part of a very personal comment and one which made me feel incredibly vulnerable to misinterpretation that I’d written in response to Genisa’s.  About four hours later the first part of my comment was eventually published, which still did little to mitigate my frustration.  (Someone on Facebook suggested those lost comments end up with all those random single socks that somehow never make it into the light of day between the washing machine and dryer.  I kind of love that!)

Genisa wrote in frustration – “I am noticing a pattern here. They are only posting the first and last of cont. posting. I had to post 6 posts to get all of what I wanted to say out. How can anyone understand what I said if all they post is the beginning and end of what I was trying to say? It is leaving out all of the details, the important stuff. This is how it is every day living with Aspergers. I tend to not ever get the whole message people try to tell me, because I am so focused on the details. But when most of it is left out, I just don’t get any of it.”

“This is how it is every day living with Aspergers.”  The analogy being drawn between the frustration of not fully getting everything someone is saying, whole chunks of  what is being said are erased, and trying to make sense of it all anyway, while being expected to respond was so powerful to me.  I thought –  What if it was this way when you tried to express yourself as well?  What if you had a whole idea, something you wanted to relate to another person, but then had to submit it (say it) in short segments, yet it came out scrambled and not in the right order with some of what you wanted to say not coming out at all?  What if this was your constant experience in attempting to communicate with others?  Imagine if every time you had a conversation with someone this was your experience in both receiving information and giving?  Imagine how incredibly frustrating that would be.  Imagine if this happened not once, when you could shrug it off knowing that it was a one time annoyance and while irritating not an ongoing problem, but each and every time you spoke.  Imagine that your experience of communicating was to have people routinely misunderstand you or respond to the last part of what you’d said without hearing or understanding the first part.  Imagine if when people spoke to you, you lost portions of what they were saying.  Imagine what it would be like to ask them to repeat themselves and have them lose their patience with you.  Imagine if you were scolded, ridiculed, called names and punished for not giving an appropriate response.  Just imagine how that would make you feel.

Can you imagine?

For my latest piece in the Huffington Post, click ‘here
 Anyone can contribute!  To be a part of the change, contribute to the Autism Positivity Blog click ‘here

Autism Acceptance

Paula Durbin-Westby is an adult autist, an advocate, a writer, blogger, and mother. She writes extensively about autism on her blog – Autism Acceptance Day.  I had planned to do a series throughout the month of April of Autistic writers discussing autism, “awareness” and acceptance, which I planned to submit to the Huffington Post.  However, HuffPo does not take “guest bloggers” and as I hadn’t gotten permission beforehand, this piece from Paula was never printed.   I am printing it here, instead:

This article introduces a new celebration for the month of April: Autism Acceptance Day.  First, the background.  Autism Awareness month has been around for quite awhile.  Unfortunately, much of the deluge of “awareness” has been demeaning and even discriminatory.  Many Autistics have written pieces on the theme “April is the cruelest month.”  Parents talk about wanting to turn off the TV during April so their Autistic children will not have to see the alarmist statistics and “medical mystery” reporting.  Autistic friends, weaving their way through a barrage of autism “warning” signs placed prominently on campus, talk about how they can’t wait for April to be over.

In 2008, the UN declared April 2 World Autism Awareness Day.  A year later, in September 2009, during an autism conference the UN showed a video called “I Am Autism,” which portrays autism as a demonic persona that threatens harm to parents and families. In one section, voices chime “We are the United Nations,” showing people from many nations who will stand up to “autism.”  It was outrageous.  The United Nations, by showing this film, violated its own principles in the UN Convention on the Rights of Persons with Disabilities.   The UN wrote in Article 8, and I quote, “As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities.

Against this backdrop, I organized the first Autism Acceptance Day in 2011.  Autism Acceptance Day was to be everything that Autism Awareness Month was not. Rather than “awareness” that insults and even damages the life chances of Autistic people, I promoted complete acceptance, not just mere tolerance. As Autistic activist Nick Walker puts it, “If it doesn’t involve acceptance of autism, and acceptance of autistic people as autistic people, you don’t get to call it “autism acceptance.” I was tired of my friends being hurt, and dismayed at the media and parent- and researcher-led autism organizations portraying autism and Autistic people in what my nine-year old calls a “despicatizing” light.

Autism acceptance means an active acceptance of neurodiversity. Neurodiversity sometimes gets a bad rap, but it’s really fairly simple: neurodiversity encompasses all neurologies, from “typical” people to those who have a variety of neurologically-based differences and disabilities. We support all people with disabilities, even though our emphasis is on neurology. We assert the worth and dignity of every person, no matter what their disability or level of disability, including people with significant disabilities. Our aim is not to gloss over the very real difficulties that people with neurologically-based disabilities face. Our focus is on access to services, supports, education and employment opportunities. We support the development of communication systems, a high priority for Autistics, some of whom do not speak, and many of whom do not have reliable access to language-based communication at times.

The first year, Autism Acceptance Day was primarily an online, Facebook event. I started a blog so that people who were not on Facebook could read about Autism Acceptance Day and participate. Over 1000 people signed up for the Facebook event. This year, as more people made plans and expanded on the idea, I wrote – “It’s time to take back April!” ASAN did a series on its blog and there were other events and activities.

Like any other community, the Autistic community and our supporters have developed expressions of community involvement.  Some events are celebratory; some are not.  On March 30, people attended candlelight vigils to mourn and remember people with disabilities who have been murdered by family members or caregivers. The vigil effort was organized by Zoe Gross. An online vigil was implemented as well.  As with other minority communities, a sense of identity, pride, and accomplishment, as well as a time to pause and reflect, is a way to build upon our strengths, learn to work together to promote our own interests and concerns, and ultimately to foster a greater societal acceptance of people with disabilities including autism.  Sadly, the day after the vigil, Daniel Corby, age 4, was murdered.  We still have much to do toward acceptance of Autistic people.

Creating a Community

Oddly enough I was planning to write a post about commenting on blogs and comments in general.  Just as I was sitting down to begin the post, I received an email telling me one of the blogs I follow had a new post.  The post was entitled – For Ariane and Those Who Lie Awake At Night.

A little backtracking is in order – about a week ago during another late night blog surfing session (finding blogs related to autism has become nothing short of obsessive – who says the apple doesn’t fall far from the tree?) I found a blog, Life and Ink.  The writer is a mom whose autistic son is now a young man.  Since she began the blog last fall it was easy to read all her posts, which I did.  As I did, I wrote a comment on one particularly moving post and then she answered and I kept reading and read this:

“And with that said dear reader, if YOU need help, if YOU are overwhelmed, contact me. Talk to me. Let me or another parent who has been there listen and help you. If we pooled our resources and decades of experience just think of the difference we can make for each other and for our children.

Now that makes me happy.”

When I read that, I was in the middle of trying to put the series of autistic writers together for the Huffington Post and I was writing the introduction to the series.  I thought about what Charlotte had written and it inspired me to write a hypothetical conversation:

“What if, instead of receiving that memorable phone call when Emma was first diagnosed, I received a call that went something like this:

“Your daughter has been diagnosed with autism.”

“Excuse me?”

“Let me give you a list of blogs and people you can call who have been where you are now. I think you’ll find them invaluable. These are parents whose children are autistic and autistic adults who are happy to speak with you. They will help you help your child.”

When the HuffPo piece was published I commented on Life and Ink telling her that she had inspired me to write that.  We then wrote back and forth and now she’s written the post that I’ve added the link to.  In that post she writes (in response to something I’d written earlier about lying awake in the middle of the night and listening to “the voice” – “The voice knows once you share what it has said it will lose its potency, its grip on you. And that is why talking to people about what you are feeling, what it is saying, is so important. That is why these blogs are so important.”

I don’t know if any of this makes sense to everyone reading this, but each comment I receive on Emma’s Hope Book is like a little gift.  Each time I comment on someone else’s blog and they reply, it’s the same.  A little gift wrapped up in words to savor.

On this most recent Huffington Post piece an autist wrote – “I have this feeling we’ll both soldier on.”  I loved that he wrote “we” because the truth is “we” will.  We will soldier on… together.  (As Emma would say.)

So to all of you who have commented – thank you.  And to all who haven’t, but think about doing so, DO!  It’s wonderful and I promise you, I’ll respond.  I promise.

For more on Emma’s journey through a childhood of autism and ours, go to:  Emma’s Hope Book

Autism, Huffington Post and Getting Away to The Cabin

As I wrote yesterday – please be sure to read my most recent post on Huffington Post.  It is the introduction to a series of posts written by autists throughout the month of April.  Share the link, tweet, “like” and comment!

Last Friday Emma said, “Mommy, I want to go to the cabin please.” And since going to the cabin isn’t nearly as arduous as it sounds, we decided to go for a sleepover Saturday night.

It’s “rustic” but sleeps four comfortably and the kids love going there, particularly Emma.

Emma grabbed the heaviest pack and began tromping through the snow.

Once we arrived, she wasted no time getting comfortable.

Despite the fact it was broad daylight and there were lots of weird insects flying around, many of them inside the cabin.  Nic took enormous pleasure in shooshing all the bugs and moths outside, while Emma, Richard and I sat together in the rocking chairs.  Point a camera toward Emma and she makes her “say cheese” face.

We tried to get Emma to look at the clouds. They were like nothing I’d seen before.  As though each had it’s own rainbow.

But Emma was much more interested in sitting on the porch railing with her brother.

And looking out at the mountains.

When we woke up the next morning, Emma said, “Go back to Granma’s house, eat breakfast, go swimming in the indoor pool, make cake, pack and go back to the cabin!”

“But we haven’t even left yet!”

“Go now,” Emma said.  Then as she was packing up, she said, “Come back later.”

Makes sense to me.

Autism “Awareness” on Huffington Post

The following post has just been published on Huffington Post.  This piece is important to me as it is the introduction to four or five subsequent posts I am planning for the entire month of April, written by autists.   April, for those who may not be aware, is “autism awareness” month.  These autists who will be writing posts for me to submit are the voices that have changed my life.  These are the voices that, because they’ve changed my life are changing my daughter’s life.  These are the voices that are NOT being included in all the fund raisers for “Autism Awareness.”  How can we possibly hope for awareness if autists are not being included?  Please help me by sharing the Huffington Post link (here it is again, in case you missed the first one) through email, facebook, tweets, share it, comment, please, please comment, even if it’s just to say, “I read this” and send the link to as many people as you can.  We need these posts to go viral.  And I need each and every one of you reading this to help me.  Please.

Let’s change what “awareness” means.  With your help we can.

For those interested, this is Paula Durbin-Westby’s blog, one of the autists who has agreed to write the first piece to kick things off for the Huffington Post.