Tag Archives: aspergers

Electricity

16 Aug

I caught this to share with you…

 

I watched the night sky crack over and over again.

 

The pulses of light were like memories returned.

 

A few moments (a long, thirteen second exposure) calcified, concentrated on my screen (once the vocal billows rumbled past and I could plug in again),  and the fine, reaching, dendritic threads appeared and yes, this is precisely how it feels to have lost moments returned after a decade or more.

One small sparkle reaches and branches into more crackles into cracks like a heavy foot on the lake, not yet settled fully into winter.

People can tell me a memory, but it just doesn’t feel true, organic, like the deep in every cell, electrifying every nerve of a firsthand memory, and these second hand memories just can’t capture the intricacies of how my senses & mind focus and capture each morsel, waft, tactile, auditory, proprioceptive vision in an overloaded, carnival ride.

 

Each large crack, each branch, each baby eyelash and hair-thin thread a sensory memory, each grouping creating a breathing, visual, auditory, wildly flavorful, supersaturated, olfactory snapshot in time, in my strange and wonderful curious, thirsty, synesthetic, autistic, insomniac, famished brain.

 

It is electrifying.

 

-b.

Image

AccidentalThong.com celebrates 1000 Ausome Things #AutismPositivity2013

30 Apr

Here are a few of my favorite images which remind me of three of my favorite things about autism:
-When we are given the space to be ourselves, we soar.
-There are always new angles and new ways to approach everything (when in doubt, SPIN!)
-We understand each other even when we can’t find our words.

AccidentalThong.com celebrates 1000 Ausome Things #AutismPositivity2013
These are two of my favorite things! Happy Autism Acceptance Day!
Two Happy Aspies

Tendencies, Traits, Talents: Aspergirls

26 Mar

Below is a link to an excellent list of characteristics, abilities, and talents of females with Asperger’s Syndrome.  This doesn’t, and shouldn’t, serve as diagnostic criteria or as a rigid checklist.  It is, however, a wonderful start to a female profile that may guide identification and disgnosis someday.  Some people have told me, “You can’t have Asperger’s! You are a girl!”  I’m not the only Aspie female who has heard that, or some variant of disbelief regarding this very specific label many of us have struggled whole lifetimes to locate, so we can access the tools we need, so we can be understood, so we can understand…

Well, like many myths and stereotypes, this one is unfortunately heard quite frequently by women, girls, and parents who are looking for answers so that they can find the information and tools to be the best they can be and lead fulfilling lives.  I don’t think females are less likely to have Asperger’s or be Autistic, but I do know firsthand that many of us are not identified in a timely fashion.  Of course, I also saw myth and stereotype delay my son’s diagnosis, so it’s not isolated to one gender but I do think it’s more prevalent for a few reasons (these are written with more of a focus on parents and children, but can apply to an adult as well. I did not include tailored descriptions below, for ease of reading.)

1. Perpetuation of Stereotype/Myth

2.  Inadequate updating/continuing education of professionals who provide triage to those inquiring with concerns about their child’s development.

3.  Some behavior typically described as “autistic” is more acceptable (historically) in girls than boys.  Thankfully this is changing, but the remnants of “ye olde gender stereotypes” still hang about like a thick, slippery fog.

4.  Lack of mindfulness & dismissal of parental concerns, by professionals, because of the perception that a simple, casual inquiry equates to the parent being a stifling, growth suppressing “helicopter parent”.  I’ve known a few moms who were scolded by their physicians for just asking questions about autism and their child.  It’s like the obsession with healthy parenting and healthy development and the concerns about “hovering”, perpetuated by those tireless soldiers of the mommy-wars, has become more of a concern to professionals than identifying legitimate concerns and addressing them in a mindful manner.   I worry that the obsession about “over parenting” does damage to first time parents and children.  We are all trying to figure it out.  We are all works in progress.  I think those that under parent and neglect their children are a greater worry, but it’s easier to criticize the parent that actually comes into the office with a concern than the one who doesn’t bring their child in and who doesn’t share their concerns with the physician.

It just worries me, bothers me, angers me, that one can still go to a specialist who will look at your child and say “but your kid doesn’t act like Rainman!”…  I’ve brought prints of the diagnostic criteria with us to educate where we find outdated information.  I do what I can.  I do this because I hear all too often of delayed diagnosis, missed disgnosis, and parents who won’t let the label be given because of myths, stereotypes, and misperceptions about what it means to be Autistic, in this era, in this country, and in our society.

We all need to stand up and spread the truth about autism, about autistics, about parenting autistics.  One extremely vital component of that is  the different ways certain traits manifest differently in males and females.

Click to go to Tania Ann Marshall’s fantastic “Moving Towards A Female Profile: The Unique Characteristics”, Abilities and Talents of Young Girls with Asperger Syndrome.

For a fantastic read on Aspergirls, please check out Rudy Simone’s “Aspergirls” at Amazon.com.  As an adult female Aspie, I found the book to be very helpful in understanding our inherent strengths.  It does offer suggestions for Aspergirls and their parents.  There is also a list which Tania Ann Marshall’s list reminded me of.  Rudy Simone’s list is more a chart comparing manifestations of traits in males and in females.

Surfers For Autism

4 Nov Morning

We had the best day ever on Saturday.  Seriously.  EVER.

Biggest thanks ever to Surfers for Autism, the surfers, the founders, the volunteers, Fort Myers Beach, and FMB PD & FD.

I’ll be updating this post as I sift through the 789 images I took on Saturday when we were guest of Surfers for Autism.

They say that we (people with autism) are “Rock Stars”  so if we are, then I’d have to say that knowing them and being there with them on a gorgeous Saturday on Florida’s SW Gulf Coast was like the worlds most epic fantasy jam session ever, because we think they are worthy of the title as well.  Seriously.  If you had three wishes and could wish for anyone to play together, for you… That’s the fantastic and awesome I am trying to express here.

Where to begin…

We rarely go to the beach as days off and not-too-sick days rarely line up.  Also, the beach is sensory overload wearing a disguise that suggests that she (the beach) is a serene environment, but for us it can be overload starting at the application of sunscreen and escalating from there.

We did it though.  We went on Saturday.  I have proof!

Before the first run of the day:

Fort Myers Beach FD brought over a truck and handed out paint! Everyone painted and tagged! It was great fun and quite a masterpiece!

Alex painted these words on the wheel well trim: fire, 911, emergency, truck… I found a blank spot and painted his name, some hearts, and an orange penguin.

Alex didn’t know where to start so I told him, “just find a space that doesn’t have any paint and start painting!” So he painted words (you can see 911 in this image) and then he proceeded to paint all of those little rubber feely-bobber hairs on the tire orange. Nobody else had thought of that! (by the way, those feely bobber hair things are left over from the injection molding/tire making process. The NASCAR peeps have to cut them off their tires! Ahhh Viva La Google!)

Alex’s first surfers/guides/volunteers. The dads on the short kept commenting, “Oh that kid has it rough! Three total babes in bikinis!” It was pretty funny. They weren’t just gorgeous, they were incredibly patient and kind and warm and really made Alex feel so secure in that new and alien environment. I’m very thankful (for his surf goddesses! :-) When he came back to shore he had two more with him! One of the dads said to me, “That kids got talent!”.

For his 2nd run, he had another two fantastic guides. Corey and Marlene Lilly. Corey looks uncannily like Russell Brand and I was surprised when he spoke and his accent wasn’t British. He’s a really kind and mellow guy. He finds and picks up sand dollars with his feet. He brought one over to show us. I’ve never seen a live one… Corey also stopped by Alex’s sand digging extravaganza and talked to him and his dad.  And remembered his name.  These surfers, these volunteers, are brilliant at making each person feel wonderful about the experience.  Alex had a good second outing with Corey and Marlene and he was definitely more relaxed and chomping at the bit to get back in the water! After this we had lunch. Alex’s Oma (my mom) showed up just before he went for his 2nd paddle. We were so excited that she came by to see him surf!

That is my kid STANDING UP and SURFING and nobody is holding onto him! He stood up from his paddling/kneeling position, unaided, with the board gliding toward shore! I know! I was doing fine most of the day but that was it. I let my camera drop around my neck, started flapping my hands and started to cry some very happy tears and cheering loudly. His guides from the 3rd outing are not seen here but they were two guys named Jeff and Jim (or Bill. Spoken language keeps getting more challenging for me over time. It sucks, but it’s also a positive because it makes me more sensitive and aware when delivering any information to Alex who has a similar challenge).

I made this for him today:

Yeah.  I’m still getting goosebumps when I think about him surfing into the shore, with his hands out.  He amazed me.  He amazes me each and every day and has since he was born.  It’s not that I think he can’t do something, because he can do nearly anything he puts his mind to.  That being said, he can’t be neurotypical and neither can I.  We can put on an act that works in some situations, but that’s not us.  Surfers For Autism  has an incredible calm to it, that I rarely feel when with anyone other than my kid or by myself.   The reason for the calm, in a very large group of autistic people and their families, is that everyone there can just be themselves.  We pulled up to the lot next to Crescent Beach Park and I saw 5 kids in maybe 15 feet of sidewalk flapping and walking tiptoed.  I said, “It’s going to be a good day”.

And it was a good day.  It was the best day we’ve had in a very long time.  We deserved that and I will treasure that feeling probably forever, though we will have days to match once the 2013 Surfers For Autism season kicks off.

xo

B

The Meticulous Choreography of Improvisation

13 Jul

I found this on thautcast.com: “What I Can Do Is Pretend To Be You”.  It’s an Aspergian’s reflections on a life focused on passing, focused on perfecting “the character” others want us to portray.  My first three-plus decades felt like this.  I remember having to do an improv scene in the mandatory high school theater class and I just couldn’t grasp how to make improv work.  Now I know that nearly every moment of my life was strictly scripted, with rationed moments of improvisation to perpetuate the illusion of flexibility and the words and looks that suggested that I was just a freak and not fitting in on purpose, and not possibly because of anything organic, formed in me before words and judgments and comparisons.

I struggled with that for years, as I tend to fixate on the things I can’t do, or can’t do well (training from my youth, when things were forever paraded about with labels regarding shortcomings, comparisons to other people, and my intelligence).   I fixate, I hyper focus, for the sake of pursuing mastery and approval.  I should say, I fixated.  I hyper focused.  I’m so much happier now, being myself.  The approval I seek is my own, and I’ve learned to be flexible in my criteria and the word and concept of perfection aren’t in my vocabulary except as a scar that serves as a reminder to buckle up or watch where you are going as next time a scar might not even have the opportunity to form over the wound.

I wish I had this piece, from Larkin Taylor-Parker, on a sandwich board to wear around people who refused to look at me and instead focused on what they felt I wasn’t willing to be, for those who saw just the failure and the gaffes and not the effort and considerable choreography applied to each moment, to pass even just a little…

Click the link to hop on over to thautcast.  I’d like to hear your thoughts on this piece and the concept of “passing”.

On Autistic Passing: “What I Can Do Is Pretend to Be You” | thAutcast.com.

Happy Friday,

B

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