Here on the AutismHWY we often times find ourselves in the Autism fast-lane. Researching and focusing on the information that Autistic people shareabout Autismhas placed us there. Understanding how Autism operates in an individual’s human system is how we feel safe driving in that “fast lane.” How we want all others to feel. It is how we cope pragmaticly and how we move forward in a world long confused by how to respectfully communicate with every type of diversity. Autistic people are here to guide other Autistic people and the larger world…
On this day, January 20th, 2017 as a new President is sworn into these United States of America we are willing to make a very bold and provocative prediction. Even as the Daily Beast reports that the White House website made disheartening civil-rights deletionstoday. AutismHWY.com still knowingly believes that President Donald J. Trump will indeed be “trumped” with Autism information provided by Autistic people. During his administration he will find that he needs to interface with #actuallyAutisticpeople to fully face the diversity picture. It will be a momentous thing… in a brand new word, it will be UGE. The private citizen Donald J. Trump had been commenting on the vaccine controversy for years and has in fact sounded very much like an Autism stakeholder. During the Presidential debates he referred to Autism as an epidemic (seen here.) Words and beliefs he certainly shares or shared with his friend Bob Wright the Co-Founder of Autism Speaks the Autism organization furiously boycotted byAutistic people. Misinformed core beliefs about Autism and it’s history fueled by the lack of experiential knowledge of, or friendships with Autistic people are frankly extremely dangerous. Autistic people will fight for their civil rights and voices to be heard. Be ready President Trump.
We respectfully ask for any future misguided comments regarding Autism to cease Mr. President as you now are indeed an Autism stakeholder as the leader of a nation founded on free thought. Do not over think things for Autistic people because they are right here watching what you do and say about them. Please do not create any commissions touching on Autism with out the Autistic community. Seek out their counsel on their issues. Their points of view will change the world in ways we ALL desperately need.
We respectfully ask that you not gather Autism information from skeptics and critics and instead go straight to the source. Autistic people and those that respect Autism understand just how dangerous linking vaccines to Autism is. It is in reality a life or death matter on a plethora of levels. Horrific levels of bigotry, violence, abuse and harm caused to Autistic people sometimes due to anti-vax Autism rhetoric. Not to mention the public health crisis the world could experience from exposure to disease through ignorance powered by hatred and fear of Autism and vaccines. Those mainstreamed negative belief systems surrounding the “supposed causation” of a naturally occuring Autism population will shape some very scary and life threatening policies. Policy that will further entrench us in yet more of the same Autism ignorance, hatred and stigma we’ve experienced for decades. We will no longer continue to tolerate society’s propensity to avoid science and factual information by replacing it with the myths of pop culture.
Today’s inaugural address was said to be for the “ignored and forgotten people that will be ignored no longer.” Mr. President, Autistic people will not continue to be ignored and denied their natural human existence. They will not sit back and accept the world to misrepresent them and the supports they need to live a happy and healthy Autistic life. Autistic people will be and should be the voices crucially included to set precedents by helping us shape respectful communication and research towards best Autism practice for our nation and the WORLD!
We agree the time for empty talk is over! You spoke those very words today…
RESIST FAKE AUTISM NEWS…Mr. President and THINK FAST…Because Autistic people ARE!!
Over the last 6 years my non-speaking very vocal Autistic son has intermittently communicated some excruciating pain to me and to those within view of our lives moments. For some people I am sure it is quite astonishing for others possibly it is seen as horrifying. We have had all kinds of reactions and have had police and fire called outto check on “things” on several of these difficult occasions. My son’s pain is not pretty and or restrained for anyone. He let’s it all fly and that is exactly what his system dictates he do. Release the current pain with a large output of utter distraction. His own “Autistic Mosh Pit.”
A very human thing to do.
Non Speaking is not silent. Silence is not golden. Words are not always necessary. Things we should all be well aware of in 2016. Wyatt is always communicating to me and I am always receiving that communication. Watching, feeling, absorbing what I can see and sense. He has always communicated through his musculature from the time he was a very small boy. Never having the verbal skills to say NO (written about here) he has used the stiffening of his muscles to “show me” NO. It was the cutest thing to see a boy walk away shaking his stiff little knee in a resolved NO. Reading the signals loud and clear are what Autistic people are telegraphing to the people in their world and there are so many ways for non Autistics to fully listen. Unexpected and valid ways to hear golden truths.
When my son is happy and comfortable he is what one could call ’loose as a goose’…when he is in pain (hidden or discernable)…he tightens and stiffens and it becomes visibly clear that something is not flowing smoothly and he needs help. Comforting and supporting him through self injurious (pain management) is not easy. It is also not hard (when I myself and others do not ‘make it hard.’) It is necessary and it is indeed my job. A job I take seriously. A job that has zero to do with ME. I perform this job matter of factly in full focus to get it right for Wyatt, efficiently and respectfully. To honor and validate his pain and his full-on need to express it without asking him to restrain himself for the benefit of others. In those moments I am only worried about Wyatt’s benefit. What will help him?
Parents need to come to terms with the facts that make up their ‘loved ones system’ and what it needs to flow smoothly. Be it; deep pressure techniques, meridian and cranium tapping, massage, breathing pattern focusing, exercise, thought mantras, cool water drinking and pouring, Magnesium (Epsom salt) soaks infused with eucalyptus or lavender, Melatonin, Meat…whatever is needed for re-booting. If you are ‘tuned in’ to your loved one and read the many writingsand books writtenby first hand experiencers (Autistic people) you feel confident that YOU will be able to help someone in situations you have been led to believe: YOU would never understand. DARE to do what needs to be done wherever and whenever needed without concerning yourselves with what other’s may perceive or believe. You have one interest and that is the best interest of your loved one communicating to you their moments of intense pain.
This year’s 4th of July Monday included one of these explosive moments for my son and I. Autistic people do not enjoy senseless loud bangs and booms for days on end…(fyi)
While we were out in the community and in the car on our infinite AutismHWY Wy became extremely upset and needed his deep pressured tapping. Yes, it was a bit scary in the vehicle but, keeping calm, controlled and in focus are key. Above all understanding what is happening helps you to not assign fear and or panic, to a situation it need not be. Fear and panic are like gasoline and fire every time! After making it back home safely…we continued the ‘comfort work’ of de-escalating the painful situation through continued tapping, verbal validation and assurance, massage and cool water. After the painful system offenders subsided, self injury was assessed and addressed and from there we went on with our holiday.
Later, I spoke to Wyatt about how other people in the world do not understand his pain, YET. That we are at ‘high risk’ while out in the community when these painful and vulnerable moments occur. At risk of someone misinterpreting what is happening. At risk of real danger and confinement from officials in control. Officials in control without knowledge of the realities of Autism. He sobered intensely during this emotionally charged conversation I was so aware of his maturity and complete innerstanding.
Upon reading this some might say, ” how awful”…when I say, “How awesome.” My son has taught me how to help him regulate his irregularities without words. I have reached out to my Autistic friends and acquaintances to deeper levels and layers of understanding that Wyatt cannot impart to me currently.
If you ‘Google’ Autistics Speaking, you have to wait 30 seconds for: About 1,140,000 results!!
Please do not look for those seeking to be your “gurus” in order to do what you as a parent know needs to be done. Reach out and place 100% full focus on your Autistic loved one and 0% focus on what others think and feel about Autism. 100%~0% I love that ratio!
After our fire-cracker of a day we decided to go deep with the inner-work and leapt into some Art therapy. Something Wyatt doesn’t always enjoy but, as you will see in the pictures he attended to it ‘his-way’ which is peripherally. With his side focus he placed the tape and paint exactly where he wanted to… He was very intent on taking our red white and blue color frame to PURPLE. I praised his color blending techniques using our countries red and blue, clashing it into purple. I find it very profound especially when all weekend I was thinking of America in a state of Red, White and Purple…bruised, battered, self injured and needing a fresh NEW self regulated re-boot! So intuitive my youngest son. When all was said and done and the tape came off. He revealed his one of a kind piece of ART. This unplanned and amazing Star!!
A one of a kind unplanned and amazing STAR! Hmmm….Yes, EXACTLY !!
AutismHWY is blessed to know so many amazing Autistic activists and advocates. This has been THE biggest and best result of our 5 year history. Our GIFT. Thank you to the Autistic community and it’s amazing emerging culture!!
When our HWY first merged on to the internet… we did not know WHAT to expect. So many things being said about Autism. From every direction, from too many angles. It was an Autism informational ‘freeway congestion’ of overload. What do you listen to? Who do you listen to? What weight do you assign to those words you are rationally hearing? Much like the moment of diagnosis. Filtering through what seems to apply to you and your loved ones and what simply does not. It is not a simple task and in fact a very fluid one. Remember to always be flexible and fluid in this ongoing informational filtering process.
The voices in Autism come from many places. Too many places. Many of these places with fiscal motives behind them. Voices filled with pain, pride and ego. Voices filled with humanity. This is where we took our major right turn…
At AutismHWY we turned to the voice of Autistic people. The voice of the people that understand the mechanics of the Autism engine. The specialists! If your child is a Mercedes…well then you know the mechanic he or she may need for fine tuning. This IS the AutismHWY after all folks. The insights and hidden Autistic information that cannot be gleaned from “professionals” OR “parent-bloggers” comes from one place and one place only.
The decades long movement of Autistic people uniting has grown rapidly in 2015. Major collaborations amongst them like the Boycotting of Autism Speaks and the forming of Autonomous Press seek to spread their truths on an ever widening scale. Signal boostings of their information by allies will continue to grow. Their story being centrally cited in the award winning N.Y. Times bestselling book NeuroTribes by the wonderful and well regarded journalist Steve Silberman has increased visibility. Some cages have definitely been rattled. Shaken up to the point of Autism Speaks finally placing two Autistic adults as seated board members after 10 yrs. in existence without them. Let’s hope these seats are equally functional and not just pretty place-cards on the Autism Speaks table.
The future of Autistic people lies in the hands of Autistic people. The AutismHWY dictates it.
The traffic has been too congested with the previously written road rules. Non Autistic road rules that don’t apply to the Autistic engines they seek to mainstream. We need Autistic guidelines to merge with professionals and parents. These highly specialized people deserve the expert mechanics that will get us all back on the HWY together peacefully. Autistic people and parents of Autistic people must start merging together on 2 lane HWYs….1 way HWYs are no longer working. Together we can change the future for Autistic people their parents and the professional community that supports us all.
This is the GIFT we desire for ALL of our FUTURES!
Those are all signs I see as I traverse the internet these days on the AutismHWY. Signs, I believe we should all know are there even when we don’t literally see them. Autistic people and non Autistic parents of Autistic people trying to communicate respectfully. Ha, the impossible dream you say? Perhaps, but my readers know I am the eternal optimist even in my ‘darkest’ moments. When concepts are being driven on this “AutismHWY” by thinkers coming from differing directions without set guidelines we are bound to have many offending-fender benders. Not to mention the full blown pile-ups due to communication gaps! One wrong turn and you may find yourself teetering over a cliff. Our vehicles all have different engines and as drivers we all have unique ways of driving those engines. Sounds a bit familiar, doesn’t it? So many analogies to say we are all on the same life path yet we view things in distinctly different contexts.
That’s a road block.
In real life when we have a fender bender or major collision we have it repaired or replace the vehicle and get back on the road. Back on the HWY with the same drivers coming from all of those differing directions. It should be the same way in conversations that seem to crash. Autistic adults and non-Autistic parents have the ability to partner with each other for the greater good. To benefit the generation of Autistic people already here and those in coming generations because, they are coming. Shouldn’t we be ready? Shouldn’t we be listening closely and amplifying crucial information to the professionals and the general public!? Why then, do I always have conversational “fender benders” with other non Autistic parents that refuse to listen to the concepts of my wise Autistic friends?
That’s a major road block.
Which happens more and more. When Autistic people voice their concerns and grievences over attitudes and words that harm them they are scoffed at. They are demonized and called names. Non-Autistic people react childishly. They become confused by concepts that they have never before considered or taken a look at, from an alternate view. It is quite startling for some. I have seen people become defensive, paranoid and worse. It is truly dumbfounding to see the amounts of resistance and rhetoric used to battle this new information. As if they refuse to see the Autistic light.
Autistic traffic merging in.
Autistic people want to help! Please make room on your informational HWY for them, they are indeed the Autism experts. See their lights and signals on the AutismHWY. If they turn on their “hazard lights” in conjunction with something you have said or implied. Please examine that hazard. If you do not easily understand the hazard seek to define what it may have been and work to avoid harmful ”hazards” in future conversations and travels. We all know that Autism revolves around the challenges of communication. So let’s acknowledge that and try harder not to go round and round an incessant traffic circle of dialogue going nowhere. Let’s make the best effort to understand each other’s differing angles and perspectives on life and Autism.
Best and safe practices.
Knowing the landscape and anticipating what other drivers may do. Two of the most important factors to safely traverse our world regardless of our individual modes of transport. At AutismHWY we have been dreaming of a world enlightened by Autistic people. Not a world of non-Autistic parents and professionals refusing to hear their concepts. In 2015 we now have books honoring Autistic people like; Steve Silberman’s NeuroTribes winning accolades and awards across the planet. We have Autonomous Press created by a coalition of Autistic people working with a few non-Autistic allies to amplify their words of guidance with books like The Real Experts edited by Michelle Sutton. This is where we need to be. Understanding the differentials in Autism thought and practice. We that are not Autistic, owe it to Autistic people to put our own egos aside and LISTEN. Stop being offended or defensive and truly LISTEN.
Ignoring the signs will not prevent collision.
All drivers are aware that we must pay attention as we travel, our very lives depend on it. We cannot ignore hazard signs on the HWY so why do we do it in conversations? Conversations that can be literally life or death for some people. Honor that. Be respectful of people even if you are not understanding their concepts immediately. Do not rush to dismiss them and minimize them (which is so often the common reaction!) Truly examine what was said. Percolate on it and work on seeing past your own lane on this HWY of life. Expanding our horizons in thought and possibility will open up the world for the Autistic kids on the rise.
From our view~The best kids and folks on the planet.