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Posts Tagged ‘boycott autism speaks’

Filling in the Blanks




As a mom to an incredibly cool Autistic teen I do this a lot. Fill in the blanks. The blanks in thinking that my neurotypical mind had never considered before giving birth to my Autistic son! Perhaps, that is why the infamous puzzle piece was assigned to Autism decades ago. People weren’t and still don’t fully ‘get it’ when it comes to what being Autistic means. How Autism is an integral part of a person. How it shifts a person’s perceptions, physically and mentally. How can we be expected to innerstand one and other’s thought processes and sensory issues without help from each other? Autistic people and non Autistic people come from differing points of view. One mind set cannot transform the other, and shouldn’t. Even if it was possible! I feel that Autism has  become the focal point in aiding society to re-embrace that ancient knowing. The knowing that we are all from the same human family yet, we are all genetic originals and we act accordingly. Through technology we have the proof of this written into our own DNA codes. When it comes to considering the Autism Spectrum this concept should be from where we all begin.DSCN2169


Communication and thinking are rapidly evolving. Wrapping our brains around the inherent different communication and perception styles we all have is the key. Within this “thinking evolution” we are moving toward a new freedom. The freedom of fully understanding and embracing how integral these differences in people are and have been for humanity all along.

I fill in the blanks by speaking with my Autistic friends.  No, not the kids in the morning circle at my son’s day camp or the students I have come to know through his years at school. Autistic adult friends whom I  have come to know and respect as equals.  Friends I have made on-line and in real life!  Not assigned friends but, true friends. Friends I love and treasure more than people I have known my entire life. Friends that have enabled me an astounding glimpse into Autism and of life itself. The perspective that does not come naturally to my mind. The perspectives from their brains. The natural perspective of my non speaking son’s brain. Fascinating and life changing. It is an amazing thing; being so connected to a child without spoken words. Feeling so close to that child yet, just not able to fully comprehend all you would like to. It’s an even more amazing thing when the perspectives of Autistic people aid you in that regard by filling in the blanks! Putting words to what was sensed and experienced. Absolutely opening your eyes to something completely unconsidered. Rounding out the reasons things occur, or don’t occur. That’s the ”whole picture” perspective Autistic people proudly bring to the world and to the parents of other Autistics.IMG_0546


Talk about lighting up neurons!! This is why I so passionately defend and try to amplify the voice and experiences of my Autistic friends. I know how crucial their information is and just how valuable it can be to the masses. How life changing it can be for parents trapped in their own pity and grief. Most importantly how life-changing for the Autistic children of these parents still focusing on their pain and a perceived societal shame. This is why I become so frustrated when parents and organizations dismiss my friends beliefs and words with such disrespect. Autistic people have spent years trying to have their voices added to the conversation about Autism. The conversation about their own lives.


The most glaring example is Autism Speaks, the fully funded, most advertised Autism organization out here. An organization that decided to speak for people they don’t speak to. If you have followed this blog you have seen the current Boycott of Autism Speaks and that site HERE. Autistic people have asked Autism Speaks to consider their varied concerns  repeatedly. SILENCE…is all they seem to receive. Silence that we do not see as golden! Autism Speaks presumes to support all people on the Autism Spectrum yet they are at odds with Autistic adults and have been for many years. Ironically using the slogan that it is “time to listen.” I continue to ask myself how this ridiculous irony is not a well known fact? That the world’s largest Autism organization will not address Autistic people, their concerns or their boycott. Long unwilling to share the AutismHWY with the  passionate Autistic people driving the neurodiversity movement. Great people tirelessly working toward erasing the stigmas assigned to their lives by society and most certainly Autism Speaks marketing practices. Working together to gain civil rights and through their writings teach parents to nurture and do no harm to the Autistic generations to come! It is time for Autism Speaks and everyone else to listen to the great insights of our friends on the spectrum !


Is there anyone that needs to fill in the blanks more than AUTISM SPEAKS??…. would love to see Autism Speaks fill in the blanks! would love to see Autism Speaks fill in the blanks!


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Love Not Fear




I guess you can say that has always been my approach. Love not fear. That is who I have always been. Not particularly worried about the unknown things in life. My future, my career, my life’s destiny. I understood early on that my life was a loving evolution that could not be forced. That it would just flow into place. Always turning and changing while I adapted, keeping up with it’s constant movement. Learning and growing through my choices and mistakes. For the most part I have viewed life as a beautiful, sensorific journey of unexpected, simple pleasures that make me smile each and every day. I never did let Autism get in the way of this freeing mind set, that for whatever reason became embedded in my philosophy. My life’s creed.key_to_my_broken_heart-1506


Does that make me a dreamer, a hippie, a fool? I don’t know but it makes me happy. In 2002 when my first son was 13 and my second son, 3 year old Wyatt began to lose his speech and the vocabulary he had been building. I did not freak-out. I did not cry and scream, “Why me?!”~ “Why Wyatt?!” Instead I looked deeper into his eyes and said, “I know about you….I know how smart you are in there. You are not fooling me, you phoney baloney” tickle, tickle…giggle giggle. “I am right here, and so are you.” I literally said that. The impish look he gave me bonded our “innerstanding*” We both knew we were completely present. With or without words. I knew everything would be okay. He was my son after all and we were connected through LOVE not FEAR.


I did not and will never let FEAR control our lives. Our choices. There is and has been so much fear associated with Autism. Fear that I let roll right off of my back. Fear that I sense everyone else feels independent of me. It is palpable the fear that others have sewn to Autism. A monolithic fear stitched together by negative threads of ‘woe is me’ rhetoric. Rhetoric Autism Speaks and others routinely use, to raise funds while holding our families out as entities to be pitied. Rescued through donations that almost never make their way to families in need. Whenever I mention that Wyatt is diagnosed as Autistic, I literally see people’s body language: speaking volumes to us. Shoulders droop and heads sway sideways, perhaps a hand placed atop my shoulder and the same two words, “I’m sorry.” My disclosure that my son is Autistic is not an invitation or a plea for pity. It is so disappointing that people are manipulated into feeling this is the response I am evoking. I do not, nor have I ever wanted sorrow from others concerning our lives traversing the Autism Spectrum. I cannot count how many people I have asked politely to not ”be sorry.”


Do Wyatt and I do things differently? You bet, we do. Do we want others to be sad about that? No way. We live, we learn, we laugh. Meeting the Autistic population has been our saving grace. No more packets of papers for the first 100 days. Papers with black and white jargon that does not translate to our natural life. Therapeutic rhetoric about behaviors that need extinguishing and lists of where to have this done. No thank you. We are all about communication with people living Autistically. Proud and in need of support. Figuring out ways for all of us to adapt and be comfortable, far away from fear and pity.


We all know how detrimental fear can be. Especially when it’s manufactured fear or even worse an ignorant fear. Think about a crowded room where someone mistakenly shouts FIRE and everyone believes that call. I do not allow our lives to be trampled by the misguided shoutings and fear of others. It has long been said that people fear what they do not understand. Hmmm, that should be an easy fix. An understanding of Autism has to become an “innerstanding.” Which comes from understanding Autism through the experiences of Autistic people. THIS IS the  simple, powerful “research” we need. Companies that trade in fear do not want real knowledge to be out there for mass consumption. It is much easier to hold power over a community in fear. It’s no coincidence they do not want to work with Autistic people to fully understand Autism.


If the fear goes away and the “innerstanding” of Autism is made common, who will need to fund raise for million dollar companies walking in blue lit circles for cures?


* Innerstanding*  (1st time considering this beautiful word [for me] ~ Tarot Revisioned by Leigh J. McCloskey)


This post is part of the Love not Fear Flashblog scheduled for February 14, 2014.  Visit this site to find out more information and view all of the participating posts.


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Autism Speaks…You Are #4

Quite a distinction.....

Quite a distinction…..

When activists demand that “charitable” organizations (namely Autism Speaks) STOP bad-mouthing the lives of Autistic people and their families to create “action”… a funny thing happens.
People pull out the “You must not be Autistic enough” card. I am shocked that people would accuse someone of lying about their Autism and start pissing matches over how Autistic one is or is not. !!

Excuse me.

Excuse me.

I have seen people throwing my son’s life around as if it is a bargaining chip to put forth their National agenda. Calling him, the kind of Autism that is a sick burden that drains me and society epically. Using his challenges as fodder to ring up fundraising. It is degrading, dehumanizing and time for it to stop. We are NOT living in the 1900′s anymore. We have come to fully understand how damaging and dangerous hateful rhetoric can be to society. How it devalues, oppresses and sometimes kills entire cultures of people!
STOP asserting that Autistic activists must not be sick enough to need any help. First of all Autism is not a “sickness.”  Second of all, we ALL need help and support systems, Autistic or not! I find it very interesting how these “not Autistic enough” people can be so incredibly aware and intuitive about my “very Autistic” son?! Employing Autistic people to create Autistic- friendly systems and putting those in place is the National plan we are fighting for. It is NOT too much to ask for.IMG_1152
If an Autistic person can speak or type that does not mean they do not experience any number of challenges. Autistic people understand one and other and the very different degrees of supports they uniquely need. I have seen them accommodate and respect each other so amazingly. I only wish everyone else I know was half as considerate of another person’s sense-abilities as they are.
Organizations that are acting arrogantly need to cease.
It is time for “abled people” to seriously check themselves. Think about what it is they are TRULY SAYING. To stop lording that horrible rhetoric over others in order to keep them in place and/or raise money!
This is really getting old…..






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