Tuesday, July 27, 2010

Is the Proposed DSM-V Criteria for Autism / Asperger's Unfair to Girls and Women?

Hi Aspierations Friends!

I find myself most days trying to balance between being a parent, a wife, a provider for my family and an advocate for autism and Asperger's with both myself and my children.

Although I would like to do more with advocacy and I intend to do more with Aspierations and the future Aspierations.com website, some days it is hard to come across with an inspirational message for others when I'm trying to hold things together.  Although I enjoy sharing humor and anecdotes about life on the spectrum, I appreciate conversations of substance.  

On days I don't actively advocate as much as I want, I still put out my ribbon! :-)

I am not one to thrive during what I perceive to be as mundane or polite conversation.  Some might call it social small talk.  That being said, I learned over my life to mask very well.  I can mimic and mirror niceties.  From what I've been told throughout my life, people perceive me as a nice person with a kind heart and empathetic nature.  I have come a long way from where I was as an awkward insecure adolescent, teenager and young woman.   I have made many mistakes along the way but am proud of many of the risks I have taken.  I am proud to be a survivor.  I am exultant that I am here blogging to you.

Thanks for visiting me at my blog!

On my days when I'm lucky if I can find matching socks, my mediations are unsuccessful, my humor is unhumorous and I trip into walls (objects one would think are stationary and yet jump out at me on a regular basis), I ask myself how on earth can I best be a Mom, partner, friend and mentor to others when I am still figuring out my own life?  

Well, I guess that comes from being who I am, where I am at this point in time.  I suppose it derives from having the courage (sometimes cajones, often naivety, occasionally a social filter that forgot to be changed) to share my successes, failures, confusion, dreams, hopes and challenges.  Coming to terms with myself as a woman with Asperger's Syndrome being somewhere along the autism spectrum is a growth process, a life journey with paths of self-reflection, rocky climbs, tumbles, stumbles and leaps of faith.

Come As You Are... Let Your Light Shine!

Those of you who have read earlier blog postings probably know that I am in my early 40s and grew up as an undiagnosed Asperger's woman.  Throughout my childhood and teen years, I equated myself to a puzzle piece that didn't belong. (See Blog Post from 1/30, Before I Knew I Was An Aspie, My Puzzle Piece Never Fit.)   Now that I know that I am somewhere along the autism spectrum (depending on your interpretation on where exactly Asperger's fits), I have great relief in beginning to understand myself, forgive myself and in doing so, becoming a better person, however I do not let the label of Autism or Asperger's define me.

Speaking of which, I invite you to check out and comment on my poem from April 8th.  I'd love to turn this into a children's book with one line per page and photographs of the faces of autism throughout the book!   Let me know what you think!

Recently, there was been a lot of controversial debate over the proposed changes to the DSM-V (Medically Diagnostic) Criteria for defining and diagnosing Asperger's Syndrome and Autism Spectrum Disorder in boys, girls, men and women.

The new version of the DSM (Diagnostic and Statistical Manual for Mental Disorders) proposes to remove the diagnosis of "Asperger's Syndrome," and include all forms of autism as "Autism Spectrum Disorder." 

I've read the proposed criteria and find it to be ambiguous.  Here is a link to the proposed revision:

Much research has already shown that Autism / Asperger's presents differently in girls than boys and in women than men especially when it comes to social reciprocity and verbal communication used for social interaction.  

I worry that with the proposed new criteria, many less girls and women will get a proper diagnosis and therefore will not have the opportunity to receive services, such as social skills assistance and acceptance into school programs like SCIP.  As it is right now, most diagnosed with Asperger's in the school system are boys. 

SCIP (Social Communication Integration Program) is a special education program that helps students with Asperger's Syndrome develop the skills necessary to be successful in the classroom and in social situations.  I'll talk more about this later in a separate blog.

I am not going to get up on a soapbox here right now but what I'd like to ask is that you consider checking out and signing this petition sponsored by Laura Paxton from the Autism Women's Network.

If you want to sign anonymously, you can.  I did but I'm sure anyone astute will be able to play Nancy Drew and figure me out!  :-)

Whether you sign or not, I'd be interested to know what you think?

Do any of my Aspierations readers have daughters, sisters, mothers, aunts or relationships with girls that are or are suspected to be on the Autism Spectrum or with Asperger's?  I'd appreciate the opportunity to share conversation with you!  Please feel free to leave a comment below if you'd like!  If you're not yet following my blog, I invite you to do so.  If you're on Google Connect or Facebook, we can connect that way too!  

Letting my light shine today! 
How about you?  :-)



  1. Hi Karen.. have we met? I'm also on the Autism Women's Network, but don't recall you. Not that it matters, just thought I'd ask. :)

    Anyway. Hi. I'm also an Aspie-autistic woman with 2 kiddos on the spectrum. I've just come across your site, and it's great. Off to read more posts..

  2. Hi!
    I'm not sure if we've talked before but I just checked your link on Twitter and it looks like I'm following you there. :-) I visit AWN from time to time but am more of a lurker at this point than an active user.

    My Twitter name is Aspierations although I haven't been tweeting much lately.


    Thanks for stopping by my site! You are definitely welcome back in the future. Sounds already from what you posted here that we stuff in common! :)