Friday, April 12, 2013

1 in 50

My hackles raise.

I smiled when I first saw the boy talking to himself as he entered the youth services area of the library. I wasn’t mocking him but thinking, I wonder how often adults caught me conversing with myself at that age?

Self-recognition and bemusement quickly give way to territorial instinct as he approaches. Judging this book by his cover, I assume he is too old to play with the foam blocks, over-sized wooden puzzles and plush story book characters stored in the children’s nook.

Philip has his back to the young man, completely absorbed in his play. He lines up three magnetic cars and puts a plastic chicken on top. He pushes his assembly across the table, replaces the chicken with a goat and repeats the process.
concert 004
I am concerned that the too-old-for-this-area boy will disrupt Philip’s reverie. I flash back to summer at the park. Big kids invaded the tot lot, barging into a space they had outgrown, getting in the way of the kids who are supposed to be here, behaving rudely to the wee ones who need this enclosed, safe space to play in.

Here at the library, I worry that this boy carrying a handful of DVDs will behave like the punk kids at the park. He leans his too-tall-for-this-section frame over the case of board books. I eye him from one of the armchairs as he browses, picks one up, makes an appreciative sound and then returns it to the bin.

The boy leaves the books and sits in the chair beside me. I see now that he is holding a copy of Finding Nemo. I notice that the hood is still up on the black winter coat he is wearing. As he sits next to me, he begins rocking. And vocalizing.
I relax.

Instead of seeing myself in this boy, I recognize my son. I find the familiar sounds comforting. Mannerisms that I once considered odd or found unnerving now make sense to me. I am no longer wary of the boy, but feel my protectiveness extend to him.

I sit back in my chair and then remain still. I am now the interloper. I cease my running commentary on Philip’s play (“Where is the chicken going? You put the goat on the blue car. Is he going for a ride?”) Despite my silence, the other boy covers his ears. He sits like this for a moment, then moves off.

Based on his behavior, I jump to another conclusion about the young man. The recent announcement by the CDC that autism has a prevalence of one in fifty children is on my mind. In 2012 when they announced an increased prevalence of 1 in 88 compared to 1 in 110 two years earlier, I had joined in the laments.

Over the last year, however, my perspective, like the statistics, changed. I no longer fear this boy I hear making sounds as he walks among the picture books. I accept him, just as I do my son.

The original of this reprint can be found at

Thursday, April 11, 2013

Autism Acceptance: It's Not Just for April Anymore!

Just a short note. I have had a huge response to the request for interviews. I have several months' worth of requests right now, after only a few hours. It will take quite a while to process all the interviews, and then, it will take a long time to post them all, since I have found that if I post more than one thing every day or so, people tend to not see it, and to skip over some of them (going by the statistics for each post). 

Assuming that I can publish interviews for most of the people who contact me, we can keep new material about Autism Acceptance going all year! (And all decade, while we are at it!)

Autism Acceptance: It's Not Just for April Anymore!


New! Interviews with Autistics for International Autism Acceptance Decade

New Series- Interviews with Autistics

We are three years into International Autism Acceptance Decade, 2010-2020! To further the reach of the “IAAD” effort, I am going to do a series of interviews with Autistic people, especially people who do not often get public attention in the “autism world” or even in the “Autistic world.” The interviews will be posted on the Autism Acceptance Day blog at 

This series is going to be loosely focused on Autism ACCEPTANCE* but will also give a chance for people to say what is most important to them. More than that, these interviews are a way for Autistics to talk about our experiences, getting to know one another and broadening our community interactions. I am particularly interested in interviewing people who are not “the regulars” in public conversations about autism. 

Our focus audience is other Autistic people, but the general public (that part of it that reads autism-related things) will also be reading. Autistic children might read your interview and learn something about themselves or feel less alone in the world; Autistic adults might find validation of their experience and feelings.

Please write to me at pdurbinwestby at gmail dot com and we will work out the best way for us to do interviews. The easiest for me is emails back and forth. Then comes IM of various types, and finally, phone interviews. 

Currently the blog gets several hundred hits a day and reaches out past the usual forums and Facebook, according to my blog stats. On a high-volume day, like April 2 (!) I get several thousand hits. Let’s get to know each other a bit and put out your thoughts to the world!
Interviews are expected to be posted over the next few months. We are halfway through April and I also have a list of blog posts that will be coming out as well. This is a long-term project, perhaps spanning the entire International Autism Acceptance Decade.

* I will not be taking submissions from Autistics who hate autism. Apologies for that limitation, but the focus of the International Autism Acceptance  Decade is the acceptance and embracing of autism. I am only interviewing Autistic people for this series.

Tuesday, April 9, 2013

Thoughts on Acceptance – 2013

This post is a reprint from

Thoughts on Acceptance – 2013

acceptance pic final 

Been pretty silent here, but early April has come again and it is time to wake from my fallow period.  Over the last year I have made huge strides in my own acceptance.  A rough patch last year led to some protracted silence.  I had to deal with some sexual abuse that happened to me as a child.  The healing took the words right out of me.  Then I got to work forging myself a new career, as I realized that my stint as a university professor was not sustainable long term if I wanted to have a long, full, happy and healthy life.  My spectrum issues made parts of that job too difficult for me to manage without the appropriate supports in my personal life.
None of us can wave a magic wand and change our personal life.  It’s something that builds over time and generally evolves slowly.  So, I did what I had to do and remade myself.  Two and a half years after initial diagnosis, my therapist and I recently decided that we had worked through my adjustment.  I had arrived.  Truly, I have come to a place of acceptance of myself.

My differences are what they are.  Sometimes they hinder me as I work toward goals, sometimes they help me.  The difference in me now is that I no longer judge my spectrum traits as substandard or disabilities, but simply the way things are.  The greatest impact this has had on my life is that I make bold accommodations for my traits, and listen constantly to what my body tells me:  about my fatigue level, my ability to speak, the sensation of pain, or my need for time alone.

There is no judgment about my weakness or strength in these adjustments, I just know that the best way I can show myself the care and respect I deserve is to honor myself as I am.  Right now.  Today.

This is advice I often give other friends who are struggling, as well.  Many of us are so used to being told that WE are wrong, that WE need to adjust, that WE need to make more of an effort to communicate, fit in or be more “normal”, that we take this dialogue into our own hearts and minds.  We learn to constantly view ourselves through the filter the NT world has applied to us and our behaviors as…wrong.  Odd.  Not quite right.  Dysfunctional.  Bizarre.

It’s a short step from head patter of this sort to feelings of unworthiness, worthlessness, and a constant state of clinical depression.

When I hear my friends echo back to me these familiar thought patterns, I always stop them–tell them I don’t think they are speaking fairly about my friend (who just said something particularly ugly about themselves).  I ask if they would ever talk to a two year old the way they just talked about themselves?  Most react strongly about that.  We would never be so cruel as to call a toddler stupid, worthless, unable to do anything right.  The thought of being so blatantly abusive to a helpless child is abhorrent to most of us–particularly those who have been bullied and abused by others.

Yet, I say, if this is a terrible and abusive way to speak to a child, why is it okay to speak to yourself in this way?  Even if others have talked to or treated you this way, does that make this kind of talk right?  Is it a pattern to be emulated? or abhorred?

Not long after my diagnosis, I came to realize that any relationship ties I still had (after a great deal of loss) were not meeting the needs I had to be nurtured as I moved through a very long and difficult grieving process.  (Grief is hard for us on the spectrum, it is not like NT grief–be patient those of you who mourn, and be kind to yourselves, I beg you!)  I would constantly turn to others for help, for support, for a small kindness or bit of attention, and it seemed that I was constantly abandoned.

My darkened world became ever more dark and hopeless each time I was let down by others.
I know many on the spectrum experience this regularly.  A quick visit to wrongplanet makes this quite obvious.  If you feel this, it’s easy to see that you are not alone.  Making it better was a matter of acceptance–which took time and constant work–but I found that there was one thing I could work at that made me feel immediately better:  nurture yourself.

Be intimate with your needs.  Listen to your body, your emotions, your mind and your spiritual self.  Meet the needs and demands as they arise, without judgment, without rancor and without abusive self-talk.  Meet them the same way you would feed a two year old who tantrums because their nap was late or their snack was too sugary or their shoes are uncomfortable.  You would not judge a two year old.  Why do you judge yourself?

Remember that those inner, abusive voices about fitting in, being normal and faking your neurological status took years to develop, but your efforts to turn them upsidedown will have rewards.  Be patient with yourselves.  Work to see the positives in your needs.  And you will soon find rays of hope and acceptance peering through the darkness that surrounds you and your judgments about yourself and your neurology.

Acceptance starts with a commitment to accept yourself.  Then the journey after that may be long or short, but I am living proof that it can be done.  My life is so different now, but although I can say that the difference began after diagnosis, the true change in me has come after true and whole acceptance of all of me.  I used to view myself in a black and white way–these are my positive traits, these my negative, my dark and light, or yin and yang.  Now I simply see myself as me, my own most intimate companion and confidant, simultaneously my most significant care-giving obligation and care-giver, all at once.
This is what acceptance has come to mean to me.  I think it is something every human has to work toward, whether they are on the spectrum or not.  However, I think those of us who have spent so much of our lives being told we must change our inherent personalities to suit other’s views of normal, are probably in most need of this message.  Please seek peace with yourselves; walk this journey of acceptance with me.

You will find that once you put your feet on this path, those who once held power over your judgments of self-worth and worthiness will simply melt away.



Trigger Warning: Judge Rotenburg Center, Quiet Hands

I am aware.
I am aware that there is a thing called autism.
I am aware that it is diagnosed more than it used to be.
I am aware that people are scared of autism, and of autistic people.
I am autism aware.

I am aware.
I am aware of how we are treated.
I am aware of the Judge Rotenburg Center.
I am aware of "Quiet Hands."
I am aware of discrimination.
I am aware of abuse called therapy.
I am actually aware.

Notice the difference? 

This post is a reprint from

Monday, April 8, 2013

#AutismUpside Hashtag Campaign-Autism Women's Network

Autism Women's Network (AWN) is initiating a Twitter hashtag campaign, #AutismUpside. AWN is asking for readers and supporters to spend time this month thinking, talking and tweeting about the upsides of autism. Read more about how to participate here:

"Follow @Autism_Women on Twitter for reminders along with our favorite tweets throughout this month of April." 

Imagine a World Where Everyone Was Against You....

Reposted from Karla's ASD Page
Almost daily I see a post on my timeline or my inbox telling me about the HUGE changes in the quality of their lives by parents who decided to embrace neurodiversity and step away from th pity-cure mindset. It is like magic. Make no mistake that your child picks up on how you feel and if you feel pity, fear, shame, so will your child.

I get presented with children who the world has given up on. Doctors, teachers, parents believe that their only option is jail or institutionalization. The fix for these kids is always the same. They need to STOP being taught how broken they are and START being told how to accept and then advocate for themselves. But they cannot accept themselves until they meet others who accept them because a decade or more of seeing the world as against them is taking a toll. A toll too hard to overcome without a strong acceptance message.

Every NT caregiver or friend of ASD person should spend about 10 hours of focused reading/effort on the Wrong Planet site as well. Look at the depression, the sadness that comes from a life time of being told how their ways of being is socially wrong or (in the words of Socially Thinking ) unexpected.

When I go out into the Autistic community I meet people who have great gifts to give this world. They are unable to give these gifts and most of them are under or unemployed. It isn't because they have nothing to give the world but that they are unable to give these things due to their low self esteem, the world pushing them away or both.

If you like the odds of 80% unemployment, continue the memes. If you want to change these odds, become an ally. Teach your children that they are okay just as they are. The most challenging part of parenting a special needs child is really teaching that child to have high self esteem in a world designed to tear him down.
Original image here:

Sunday, April 7, 2013

Celebrating…AUTISM? That’s Right. I didn’t misspeak.

This post is a reprint. The original link  is here:  Celebrating…AUTISM? That’s Right. I didn’t misspeak.

My kid has two families and I’m not a part of both.  No, this isn’t a story about adoption, not in the traditional sense of family & adoption. But, it is about belonging.

You see, this month is April.  Annnnd… April is Autism Awareness month around the world.  Why am I doing a blog post on family & autism?  Because my son is autistic.  I am not upset or ashamed of that…actually, I’m proud of him.  Though only 3.5 years old (on April 8th), I think he’s an Amazing kid.  Most of the autistic people I have met are also pretty cool, so I think he’s in good company.  They are minorities in our social societies (stats say 1-2% of individuals are autistic), and they have to struggle with our confounded, rigid, & biased social rules that not only make everyday living challenging, but many times painful for them.   Despite all that, they persevere and do a better job at this “living thing” than, dare I say, most of the rest of us.

Okay, so I’m going off-track.  Back to my point.  April is Autism Awareness month, but that’s mostly to raise money for the research organizations & other “support” organizations that supposedly help autistics fit into our society – except that most of them don’t.  Oh yes, money goes towards research, but many times for negative, degrading research on how to “cure” all these individuals that, God forbid, have different brain wiring than most of us. That is like us researching how to “cure” left-handed people because there must be something wrong if one doesn’t use their right hand as their dominate hand.  (oh wait!  We did do lame-brained stuff like that back in the day.)

So, a lot of the focus for the month of April is about pity, and about how depressing it is to be autistic, & how we must help pull them out of their misery and be like us “typical” folk.    This, of course, upsets me.  I am tired of this outlook.  I’m tired of the Google search results for autism always showing negative topic results.
I look forward to the day when April as Autism month is a celebration of the diversity and uniqueness that autistic individuals bring to our society, like when we celebrate Black or Asian History month.

Though other autistic individuals do not share a blood line or genetics with my son they do have a connection and an understanding that is different than the one I share with him, and it is special in that way.  I don’t have any proof (other than circumstantial evidence), but I swear there’s an emotional sixth-sense that many autistics (especially children) have where they are able to sense each other, and they are drawn to each other, like magnets with radar. No matter where we go Micah will discover and connect with other people on the Spectrum.   Doesn’t matter their age either.  I’ve witnessed the connection thing happen with 2-year olds on up to young adults.  I know that not every autistic person is going to have a connection with another, and I know it’s not some FORCE-like connection, but I don’t worry that he’ll find a community where he feels comfortable wherever he goes.  (most of the time.)

At this point Micah knows nothing about autism, or differences, or anything like that.  He’s only 3, and is barely just realizing that some people have different features than he does, like skin color.  But, when he’s aware of such things, in the next couple years, we will definitely explain autism to him and introduce him to his Great, Big, Autism Family.  I want him to be happy & proud of his autism, to not think of himself as an oddity or defective, cause he’s not!  Rather, I just want him to be accepting of this part of who he is as easy as it is for him to accept his eye color.  I hope to introduce him to the online advocates/bloggers that I know or know of, to the local community & groups, and eventually have an autistic mentor for him.  Hopefully it will still be as easy for him to make connections as it has been in the past.  Maybe he’ll decide to be a blogger or an advocate himself, maybe not…. but, whatever he decides he’ll know that’s he’s part of a worldwide family of individuals that understand him, relate to his challenges, and celebrate with him in all of the Hand-flappiness/Spinniness that they can muster.  And maybe by then Autism Awareness will be Autism Celebration month.

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” ~ Ralph Waldo Emerson
“Sometimes you have to wander around until you find where you really belong. And sometimes it’s right where you started.” ~ Rachel Gibson, True Confessions

A few Cool things about Autism :
Working Memory – the system that holds information active in the mind, keeping it available for further processing. The capacity of working memory is limited: for numbers, for example, most people can hold seven digits at a time on average.  It is also the ability to hold and process quantities of information, both verbal and non-verbal — such as, say, memorizing a musical score and rewriting it in your head.  Many autistics can store huge lists of items in their minds, for extended periods, and repeat them accurately.
* Attention to detail -  some individuals with autism have the ability to maintain intense focus for longer period of time & will score higher on this trait than the average person.  Many think in details that fall into certain categories:   Visual thinkers think in photographically specific images.  Music and math thinkers think in patterns.  Verbal logic thinkers think in word details.
* Empathy (yes, I said empathy.)  – Autistic people are extremely capable of feeling and expressing love, though sometimes in idiosyncratic ways! What’s more, many autistic people are far more empathetic than the average person, though they may express their empathy in unusual ways.
* Visual-Spatial – People with autism often perform well in tests that involve visual-spatial abilities, such as fixing jigsaw puzzles, or matching shapes.
* Sensory Perception – Autistic brains have been found to be larger than average, and they contain an incredible amount of electrical discharges in the hearing regions. The cortical columns of the brain contain a much higher amount of cells than the norm, and also make extra connections between neurons.
(Don’t get your panties in a twist if these don’t apply to the autistic person you know.  Not everyone with autism is the same; I know that.)

What do you find cool about autism?  (Don’t be a Downer.  There are cool things to be found in autism.)

More Than a Number

More than a Number

They say 1 in 50 like they just learned how to count.
You are more than a number.

They measure you down.
You grow up and prove them wrong.

They say Autism Speaks.
You spell it out, N O!

They light it up blue.
You are all colors.

They make believe the story of Autism.
You are the truth.

They got nothing on you.
You got rights.

You got every right in the world,
to be accepted,
to be included,
to be loved.

May they recount,
their own arrears,
their own deficits,
their own lies.

You count.

More poems are here: