Autism Hwy
Login   |   Register


Posts Tagged ‘Autistic activists’

The Autism “R” Word: Is not what you think…


While we have come so far, blazing forward with the information that Autistic people need to be heard. We have also hit brick walls trying to create these ’inroads’ to listening within our own community of Autism ‘stakeholders.’ When I say stakeholders I naturally refer to Autistic people, parents and loved ones of Autistic people and the professionals working within the Autism ‘industry.’ I specifically place these stakeholders; within the ranks of Autism into this order. Autistic people first, parents/family/friends second and professionals; making a living third.
AutismHWY believes this stakeholder order-shift is correct and crucial to the future of Autism and Autistic people. Parents and professionals that have heretofore defined Autism are being told those definitions were never on point. They are being told that they need to step down a rung or two in the reigning order of Autism dialogue. This causes resistance, denial and major deflection. Non Autistic stakeholders that have enjoyed the privilege of running the Autism ‘services and possibilities industries’ without Autistic people are being TOLD to be inclusive and they don’t seem too happy about it.
What could be more confusing and ironic than THAT? Non Autistic, Autism stakeholders continuing to ”speak for and over Autistic people” after being told repeatedly that they (Autistic people) can and will speak for themselves?
A prime example of NOT FACILITATING COMMUNICATION….loudly and clearly.
It goes completely against all common sense. Non Autistic people should be supporting Autistic people to be exactly who they are by honoring their communications. Not using the Autism “R” word on them when they ask for respect. The fact that Autistic people are struggling to be heard by the stakeholders within their own “community” proves one thing. It is NOT truly their community. If it were, these non Autistic stakeholders would be elated by the communications coming from Autistic people all over the internet and in real life. They would be working as furiously as they could to implement Autistic insider knowledge into REAL Autism futures, programs and successes.
Yet we don’t see that? Instead we see people continuing to control the conversation by focusing on the discord this shift in hierarchy causes. Decrying a ‘growing intolerance of one another, our differences, & growing biases of anger/resentments.’ Never talking about the actual issues of concern JUST the tone, volume and temperature of the conversations about the concerns. (?) I wonder how people pointing to this ’bias of anger, intolerance and resentment’ within ’Autism’s global community’ believe it was grown to begin with?
It was grown through cultivating years of omission. By professionals and parents being considered the only source for Autism information. By the creation of harmful practices purporting to help Autistic people. By many parents and professionals jockeying for money and attention while actively ignoring the words coming from #ActuallyAutistic people themselves. By the use of the Autism R -word to minimize and silence Autistic people. That’s one wicked garden I can  readily trace… 
If Autism stakeholders genuinely seek to expand and enroll outsiders to be more accepting of Autistic people…MORE parents and professionals will step down from their high horse to listen. Listen to the Autistic people they have misguidedly believed are silent or incapable of communications. People that speak volumes in ways hard to comprehend for those that don’t actively listen with all that they are.

The Autism “R” WORD is RADICAL!


Sadly, It is in fact RADICAL to expect equality for the masses of growing numbers of Autistics & those of us who love them.

Resistant people can STOP dragging their feet by continuing to control the Autism conversation using the “R” word against Autistic activist’s that push the change envelope we see shifting…


  • Share/Bookmark

Tags: , , , , ,
Posted in Uncategorized | 1 Comment »

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!


  • Share/Bookmark

Tags: , , , , , , ,
Posted in Uncategorized | No Comments »

The New Scarlet Letter?


Silke Heyer's hand painted scarf back-dropping empowerment!

Silke Heyer’s hand painted scarf back-dropping empowerment!



The other day I came across a post where a Mother claims she will never refer to her child as AutisticThat he is more than that stigma and hopefully one day that will change.

People say all kinds of things. Over and over, again and again. Is it a type of thought “brand messaging” or, is it straight brain washing? Whatever you want to call it. It can be damaging to the way a person (a society) is conditioned to think and react.


We have all heard the old adage; if you say something long enough it becomes the truth. Even if it never was. Scripts people compose serve purposes, especially when seeking to control and domineer others perceived to be different. This is an insidious way to behave. Even more insidious is that this behavior is seen everywhere when you really look, in small ways and in very big ways. The running script concocted for Autism in particular has been way off of the mark. I for one, am sick of sticking to it.


There are scores of Autistic adults with powerful things to say about rewriting that bad script the world has been handed. They work passionately for a more complete understanding of these different Autistic and valid ways of being.  We as a community could use a new script for the so-called ‘mainstream’ world. If we had our way here at these would be a few of the new head script writers: Ibby Anderson-Grace, Nick Walker, Kassiane Sibley, Amy Sequenzia ,  Alyssa , Paula C. Durbin Westby, Zach Richter, Michael Scott Monje Jr., Emily Page Ballou , Lydia Brown, Ari Ne’eman, Jane Strauss,  Matt Young , Judy Endow  and many others I will CONTINUE TO LINK here by name.






Why hope for the ableist status quo to just go away one day and in the mean time continue following their restrictive bad script? If “they” say Autistic is the big “A” word and no one will allow a son or daughter access to the real world with the word Autistic attached to them. Why not improvise? Why not strive to change that? Why should we just accept someone else’s oppressive script or tag concerning the word Autistic? Concerning Autistic people? When schools of thought aren’t that intelligent shouldn’t we deviate? Educate? The people that have decided the word Autistic is the big “A” word are not that informed, truly. “My child cannot have that word associated with them. People won’t see past it. Until things change, I will just whisper it to you that he or she is on the Spectrum.”

Is AUTISM equivalent to a "Scarlet Letter"?

Is AUTISM equivalent to a “Scarlet Letter”?

People are still looking past Einstein’s Autism. How about Isaac Newton’s or Nikola Tesla‘s, how many other’s past, present or future ? The Autistic mind is essential to technology. It always has been. So why are people afraid to be associated with the word Autistic? Why has my son’s condition been made into a dirty word to some people? I truly don’t understand. 1016226_10151498480143461_1259390007_n


How does that attitude help, coming from a parent advocate? Someone, who is supposed to be an ally. If we ourselves, whom live with Autism everyday in our amazing children and wonderful friends are afraid to say the BIG BAD ”A” WORD out loud….well then, call me a monkey’s uncle. Will anyone else? Will the people in society allow us to be considered something more than a 1 trick pony Rain Man? Autistic people and allies  need to break down those barriers that were built divisively against us. Familiarize people unfamiliar with Autistic ways and (comfort zone) means. Definitely, don’t continue to demonize the very word Autistic adults use everyday in reference to themselves. Can we please all agree on that and realize we must work together to shift the negative stigma that has been bestowed upon our lives? Can we be the change we want to see…?


Not just waiting for somewhere over the SPARKLY RAINBOW!


“Our lives begin to end the day we become silent about things that matter”~Dr. Martin Luther King


YES, Yes we do!

YES, Yes we do!




  • Share/Bookmark

Tags: , , , , , , , , , , , , , , , , , ,
Posted in Uncategorized | 2 Comments »