Autism Advocacy in the Age of Social Media

It was a sticky, hot summer day when I first heard the word Autistic used as a way of describing my quirks. For 24 years I had grown accustomed to my awkward people suit. Most people called me geeky, energetic, and cerebral, but also thought I was very kind. I misread my peers intentions, failed to keep up with social trends, and at times had a real hard time controlling my energetic presence that was more suited for stage performance. I certainly struggled socially but my fight was more so an inner one. The way I saw myself was fragmented and depressed, distorting my personality to somewhat puzzled onlookers which in turn added a layer of awkwardness to my social interactions.

When I finally received my official diagnosis of Autism Spectrum Disorder (specifically, Asperger’s Syndrome) a few years later, I was relieved to know what was happening, and moreover, the steps I needed to have the life I wanted. My friend world shifted post-diagnosis. Some friends felt more at ease and offered their loving support. Others felt uncomfortable and eventually disappeared from my life. It was a difficult process to endure, but in the end gave me a clear view of who I wanted on my long journey through Autism. But my inner fights were protected from deep shame and ridicule in some ways, because I knew who was talking about me and why they wanted to share my story.

An Autism diagnosis for me was like Fung Shui for my mind. It allowed me to place the fragmented pieces together, develop my inner worth, focus my energy on positive growth, and eventually release myself from burden of victim-hood. This process was one I was happy to share with families desperate to hear the story of a survivor, and how Autism became the strength in my story rather than the weakness. People would often take me to coffee, or even lunch, so they could talk about their journey with me. We would bounce back ideas, create plans for the future, and debate even the most controversial of subjects.

It was organic, but slow. Years would go by without much change at all, especially as organizations failed again and again to invite Autistic Self-Advocates to the conversations happening in boardrooms and classrooms. Taking the conversation from the coffee shop to the boardroom was about as possible as jogging to the moon and back. A decade of advocacy work could equal one byline in a thousand pages of policy and procedure. It was exhausting.

In the early 2000’s, I decided to embrace the still emerging social media culture. I created a Facebook page, a Twitter page, and joined Facebook. In 2009, I also created my first blog post with hopes I could extend the coffee shop discussions to a wider audience. Readership of my blog was counted in followers who were automatically emailed every time I composed a new post. Twitter followers would reach out to me in hopes of bringing my message to their communities, and Facebook friends would find joy in getting to build a more genuine relationship with me, no matter how far away they were.

Soon, I was accepting invitations to speak all around the US. I traveled to Florida, California, the Carolina’s, and Sedona, Arizona where an amazing community there lifted my perception of myself, and my message. Within a few short years, I was working a speaking circuit and was the subject of a documentary by John Schaffer called The Shadow Listener. My story was helping others and I couldn’t have been happier.

Then, something shifted.

I remember the first time I read negative comments on my Youtube videos. Crude comments from an anonymous user left me feeling dirty and used. Now I certainly had heard my fair share of nasty comments varying from the way I looked, to my actions. People could certainly be cruel, but each little cruelty had a face behind it. I could see who didn’t like me and I was equipped to handle the emotions that followed. I would learn from the situation and move on, skillfully removing cruel and dangerous people from my radius. But how was I to deal with this? How was I supposed to move on? What could I learn from this when I couldn’t identify the origin and therefore asses the danger? Was I unsafe?

Not one part of me was ready for living on the unfiltered street corners of social media because the tools I developed to keep me safe were forged in a world where everyone wore a people suit they couldn’t easily separate from. In our physical world, we can usually see dangers coming in time to develop a strategy to keep safe. If someone is cruel to us, we stay away from them. If we bump into a bully at a grocery market, we can walk away without saying a word. But how would one walk away in a digital world? Moreover, how would one see danger coming?

Social media grew so fast, I found myself overwhelmed with it. Negative rhetoric started infecting my posts in public, while my private inbox remained nearly empty. Invitations to coffee shops were replaced with invitations to like closed groups. Parents started soliciting mostly free advice from self-advocates, and even professionals with social media profiles. Advertising pushed webpages into their feeds that agreed with their suspicions rather than the research and science they needed to overcome fear. As larger groups bought their audience through palatable keywords, Self-Advocates were pushed to the bottom of google searches.

Where is your struggle?

The Shadow Listener, the documentary about me that I mentioned earlier, was an egalitarian project. The director, John Schaffer, wanted my voice to be heard and to remain true to me. He allowed me room to talk about myself in the light I felt was true to me; a light that was overall positive. My journey with Autism has been one of triumph, fueled by tenacity and the desire to belong. So John allowed me to focus on the positives, spending very little time on the struggles. I appreciated that he was willing to compromise his vision in order to make me feel the story was true to me. It certainly was a huge risk for him to take. A risk I wish would have paid off better for him.

Despite all of the excitement in the online community, when the documentary was released I was bombarded by silence. The movie was not truly screened and online viewership was minimal. As I poked around for feedback from a crowd that had all but disappeared, I found their disappointment was due to the documentary not showing enough of my struggle. They wanted more drama, more of a sob story.

Somehow I had been burdened with confirming other people’s perception of Autism. My story was supposed to be their story too. I was supposed to be filled with struggle, fear, and disappointment. I was supposed to be a victim.

My social media world was shifting. People weren’t just gathering into groups that agreed with their perceptions, they were actively silencing those who appeared to oppose them. Self-Advocates, like me, still brave enough to share our experiences were expected to somehow represent the entire spectrum of Autism, and eventually we were “too abled” for our experiences to matter at all.

I think I can safely speak on behalf of all self-advocates when I say we never intended to represent all of Autism. I certainly have no intention of speaking for anyone other than myself. My story is not here to make the caretakers and the parents of Autistic people feel better. I share my story to help you better see us as people with valid experiences and unique abilities. What I experience may give you insight, or it may not apply at all. But it’s not about how Autism makes you, the onlooker, feel. It is unfair to hijack my story in that way.

Rebrand the internet

For a while now I have felt I could only share the bits and pieces of my story that don’t rock the proverbial autism boat, overcome by the fear that sharing would cost me professionally. Whether that is true or not, I have allowed this fear to silence me, even avoiding invitations to publish in print media. I foolishly allowed the “woe-is-me” trend on social media to lead me to being the victim.

My real-world tools are useless in the digital world that is driven by popular opinion. I could delete all of my social media accounts and push for a return to the days when you had to invite me to coffee to talk with me. But going back never seems to deliver the intended results. It just reminds us we haven’t gone forward.

Instead, I want to rebrand the internet. I believe that technology is overall a good and positive thing. We just have to develop the right kinds of tools to keep it on track. Autism was the new brand I needed to go after the life I wanted. My diagnosis unlocked the tools necessary to be the best version of myself. Why can’t we do the same for social media?

I want #rebrandtheinternet to be a movement that uses technology to connect people in ways they can take action. We need to hold ourselves accountable for our own online actions, talking to each online profile as if we were in the room with them. Is a short menu of emoticons not an adequate representation of how you feel about a post? Comment instead with a respectful, egalitarian tone, or invite the person to coffee to talk out their problems.

As an Autistic Self-Advocate, I want to get to work helping where I can, but I also want my time to be valued and my individual story to be respected. My journey with Autism is difficult, but I want to put my attention onto the successes. I want to feed into the Universe the positive energy I want to get back. Did I struggle? Yes. Did I struggle the way you did? I have no idea, but do I need to share your struggles in order to influence your triumphs?

With your help, we can add value once again to the diversity of experience and the power of overcoming. How do you think we can #rebrandtheinternet?

Not here for your validation

Not here for your validation

May marks the 10th anniversary of my blog. Since 2009 I have been sharing my experience with autism with an unleashed level of vulnerability. After 26 years locked in the closet of the unknown, I found my diagnosis to be a liberating experience. Though the diagnosis was liberating, living with Autism is a challenge that pushes the boundaries of human acceptance. It is not easy being the proverbial social battering ram. Yet I found that my honesty gave hope to others as I have traveled this path with only late life interventions. It gives me great joy to know that my openness helps others.

It has been a while

One of the drawbacks to my openness is it sparks the same openness in others, and not always in a positive way. The constant bombardment of criticism of the deepest parts of my being slowly inject soul toxins and weigh me down. To feed the souls of others at the cost of my own is not a healthy approach, and so I took a long holiday from blogging.

I didn’t set a date to start blogging again, and I was quiet about my departure. Instead I set reassessment dates every quarter to decide what I wanted to do with my advocacy work, returning only when I felt healthy and at peace. In that time I found myself doing much more personal writing and even wrote another book. If anything I learned I was not taking enough time to create elsewhere.

Now that I am back, my publication schedule will be monthly with maybe the occasional special edition post.

A re-branding, of sorts

2019 has become my year of healthy living. I have made adjustments to my diet, started exercising more, and even cut off all of my hair which I have donated to making wigs for cancer patients in honour of my mom’s fight to be cancer free. Mindfulness practice, yoga, and aimless strolls in the park are all part of my routine now to feed my softer side. For the rough and tumble side I have added hockey and HIT training. I certainly feel MUCH better.

Re-branding requires changes to my blogging though, right? In short – No. I see no reason to discontinue being open and honest as is in my nature to be. Instead it makes more sense for me to share my observations with readers and what I want to see change.

There are a few pet peeves I have with people, as we all do, which I have written about before in the post Why Don’t You Just…Be Like Everyone Else. But is seems there is a similar undercurrent to almost all of the negativity I encounter as an Autism advocate; people look to me to validate their own view of Autism, and in those cases I almost always disappoint them.

There is no one way to be Autistic, and the gamut of Autism is quite broad. Each Autistic person who is willing to share their experiences of being Autistic have something unique to offer. This is something we should accept as a way to broaden our view of humanity and NOT as way to alleviate shame. I know many people in the Autism community that do not agree with me on huge talking points like vaccines, empathy, and facilitated communication, and that is acceptable so long as we continue to dialogue without judgement.

When Autistic Advocates are wedged into the position of validating views and alleviating shame, we become sounding boards for the current acceptable norms, muffling our own voices. Telling me my experience of Autism is not valid when it disagrees with your own views is like telling the person you kicked how much they hurt. I know my own pain and I know my own joy, even if the current definition of the diagnosis says I can’t. You can like what I say, or not. You can even debate with me. But in the end we both must be willing to expand our own minds.

In Buddhism, one of the three universal truths is “everything changes.” We are creatures that continue to evolve and the only way to survive this is to be adaptable. In my opinion, the most beneficial form of adaptation comes from the collective willingness of communities to expand our understanding of the universe, which also means were going to be wrong. Often. If we allow ourselves to fall in an environment where the collective is there to help catch you, then we can let go of our fear of failure.

I see it like this – Autism is an ocean where on the surface are waves and beneath is a sea filled with life. Like the ocean, autism has a cycle of tides, and can become unnavigable when the sensory storms hit us. Sometimes outsiders can unintentionally get caught in our undertow, but with patience and time, we can provide so much to humanity. However, shame and the fear of failure are the toxins that destroy our climate, making the storms more intense and suffocating our life within. So what can you do? Instead of looking to Autistic Advocates to validate your views, look at us with a sense of wonder. Look at us as contributors to the over-all story of Autism.

I didn’t choose to be born Autistic anymore than I choose to be female, or have hazel eyes. These are just the pieces of my being that was handed to me by the complex yet beautiful odds of the universe. What I do get to choose is how I translate myself to the world through the tools I have worked tirelessly to acquire. Some people with Autism do not want to be advocates, and some Autistics want to be political game changers. Some of us want to write blogs and give words of inspiration, and some of us want to aggressively challenge the limitations of society. There is no wrong way to advocate so long as it has an overall benefit to the long-running narrative of Autism. In other words, Autistic lives now should benefit now from advocacy taking place now because that benefits Autistic lives of the future.

What now?

So now I return to making my videos that help bring a positive perspective to the world of Autism. I see beauty in Autism but that doesn’t mean I ignore the suffering. Autistic people suffer just like all humans suffer. Suffering is a part of life and I can recognize while still taking steps to living with joy, peace, and love. There will be times I write about Autism in ways that makes you angry and I am sorry for that, it is unintentional. Perhaps the next time you are angered by the words of an Autistic Advocate you can ask yourself, “What flaw in myself do I feel has been exposed by the actions or words of this person?” Often times I find my inability to see the big picture is caused by deep rooted feelings of inadequacy usually placed there by my absorption of societal judgment. So I tell myself I am not alone and then I look for a safe place to share my feelings.

Being a strong voice for Autism is something I have worked tireless at and it is a big piece of the person I have become. So let’s keep the dialogue open and continue to broaden our understanding of Autism.

When Charity Taketh Away

When Charity Taketh Away

How Autism Speaks stole income from working Autistic people

This past week I presented at a conference in San Diego called Love and Autism.  The conference was put together by the amazing professionals at The Family Guidance and Therapy Center of Southern California.

I have spoken at many conferences, but this one is the most unique I have experienced so far.  At this conference, the narrative is led by people with Autism.

In an attempt to shift the narrative to one of love and acceptance with Autistic people at the wheel, this conference features mostly Autistic presenters. Each one of us shared our unique ways towards independence, academic success, career success, and stories of overcoming the odds.  There are no talks of cures, nor any talks presenting methods of normalization.  The conference is filled with positive energy and hope for young autistic people and their families.

Beyond the perspective this conference spotlights, they are also among the very few who pay Autistic people to speak.

Autistic people are invited to present their stories for the benefit of others quite often, but are rarely paid.  When you attend a conference, only the headliner speaker – the big famous person you likely attend to hear – is the only one paid a contracted rate.  At most of the breakout sessions, the presenters are there on their own dime, including people with Autism.  This is the industry standard.

Most conferences make up for this by providing a table in a common area where presenters can sell books and other products, giving us an opportunity to advertise our work.  The book sales, for many autistic speakers, are our only source of income, particularly at a conference.  Even when conferences pay, it is usually a small honorarium making the book sales the only way for us to do more than break even.  It allows us to pay our own rent.

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As a female on the spectrum, I am one among thousands of Autistic women who struggle much harder than Autistic males to be valued and heard.  Many of us share the common story of being rejected from big house publishers under the guise that there are not enough readers interested in female Autistic narratives.  Books written about normalization techniques or praising therapies such as ABA are much more likely to be considered.  However the memoirs published are mostly by males.

This means Autistic females, and Autistic LGBTQ, must be more self-sufficient and industrious.  Many of us have turned to the self-publishing world putting our homemade books at competition with the big house publishers.  Limitations for self-published books can be too difficult for some to overcome, especially when big house publishers have teams of talented people making the book look good, sound good, and can market it in stores around the globe.

Those who self-publish, as I did, must do everything themselves.  My book, I Am Snamuh, was completely homemade.  My 15 year old daughter took the photos for the cover.  We laid out the book ourselves, and commissioned friends and family to proofread.  Each page layout, the cover bleed, cut, and all printing specifications had to be carefully considered.  I spent hundreds of hours creating my book.

Listed on Amazon.com, I only profit a few dollars from each sale.  Amazon does not advertise for me, and in fact prioritizes big house publishers because they pay for more exposure, something I cannot afford.  My book is not on the book shelves because most booksellers do not allow self-published books in store.  Except in the rare cases where self-published books become best sellers, most of us make very little on our work.

When I present at conferences my books sell very well, and often times I sell out.  Conferences are my opportunity for people to get to know me, and to hear my story.  Once the audience has connected with what I have to say, they are eager to buy my book.  To provide books at conferences, I must buy each copy out of pocket and pay to have it shipped to me.  I can only buy what I can afford up front, which is usually a small amount of money I have held back from previous book sales.  Whatever I do not sell, I must take home with me.  I must sell 20 out of 50 books to break even. So, you can see why it is imperative that I sell out if I wish to walk away with an income.  For the 30 books, I would gain $300.

I was not the only Autistic person selling books at this conference.

Enter Autism Speaks

The Love and Autism Conference released their dates to the San Diego community over a year ago with the conference locations to be at the Liberty Station Conference Center.  After the conference was announced, Autism Speaks scheduled a fundraising event 700 metres from the conference pulling sponsors and attendees from our event. (Link to Autism Speaks website showing San Diego Walk at Liberty Station)

Books I did not sell this conference. A very unusual occurrence at conferences for me.

No matter how we look at this, Autism Speaks stole income from hard working Autistic people trying to be independent.  Even if the act was not deliberate, how is it that an organization that declares itself a charity to benefit autistic people not know that such an important event FEATURING Autistic people was occurring 700 metres away?  In fact, the amazing people who ran the conference dipped into their own pockets to be sure every Autistic was paid.

I have tried many times in the past to invite Autism Speaks to the table to talk about how they can truly help us.  I have encouraged members of the Autistic community to attend Autism related events even if Autism Speaks is present, to show them we have a voice.  Time and time again I have tried to find middle ground with Autism Speaks.

 

Yet Autism Speaks keeps robbing the Autistic community.

Here you can view the Facebook post I made about it

How you can help

Please help the Autistic people who lost earnings at the conference by doing business with us.  Hire us to speak, purchase our products, share our stories on social media, and encourage print and television media to feature our voices.

For a complete list of the speakers who lost wages, visit the Love and Autism website – https://www.loveandautism.com/speakers/

Please also consider donating to The Family Guidance and Therapy Center of Southern California for their support of Autistic people, even at their own loss.

 

Collective Friendship

Collective Friendship

Dear Phoenix,

Back in early 2015 I was working hard to grow past many of my limitations, and push myself towards my dream.  I wrote a script for one of my 5 minute positive takeaway videos, but never got a chance to make it.  Chasing a dream takes ample energy, and all of my resources.

Here is the script I wrote:

EXT. LONELY ISOLATED ROAD ON EDGE OF TOWN

A woman, named Seeking, is walking alone, in worn out clothing carrying several suitcases. Each suitcase is labeled with a different burden (hunger, loneliness, unemployment, debt, past transgressions). She is wearing an untied straight jacket labeled exclusion on one arm and judgement on the other. She continues to walk but wants to stop. Every time the she stops, she is pushed away, like an unwanted stray animal. She continues to walk out of town to the isolated road.

Along the way, she is passed by cars who honk at her for taking up the road, or looking unkempt. She lies down on the side of the road to rest, but becomes afraid of the shadows in the forest. There isn’t anything there, but she can’t understand that. Seeking runs, but then collapses as the shadow draws near. She feels she is being attacked. Just as she thinks her life is over, an old woman helps her up. One by one, the old woman detaches the suitcases from Seeking, and then removes the straight jacket and wraps her in a blanket. The blanket says Friend.

The old woman, named Compassion, wants to leave the suitcases behind, but the girl is reluctant to leave them behind. The old woman hugs Seeking and leads her away. They arrive at a modest house on the edge of town. In the home are other friends of the Compassion, who all jump up to help.

They feed Seeking, clean her up, and keep her warm by gathering together under a large blanket together. After some time passes, one by one each member of the house goes back to the location where they picked up Seeking, and grab a suitcase.

A man named Nourishment, picks up the suitcase labeled hunger. He carries it back to Seeking. He fills the suitcase with seeds to plant, bread, and other nourishing food. He brings it to her and feeds her the nourishing food. He sets aside the seeds to plant until she is healthy enough to tend to them.

A child, named Dreamer, in the house picks up the unemployment suitcase. Dressed in her best, she drags the large suitcase from business to business, until the local printer takes it. The child receives a paper that says employed and she runs it back to Seeking.

A married couple, named Security and Sustenance, take the debt suitcase. They perform on their instruments in town, and collect donations in the suitcase. They take it back to Seeking, and show her how to use employment to finish filling the suitcase. Security brakes the hinges of the debt suitcase and places the top not to it, splitting part of the money into the top. He labeled the top Future. Seeking, feeling strong, rises out of Nourishments arms. she puts on her shoes, and her work uniform, and walks to the print shop.

Nourishment, Security, Sustenance, and Dreamer all walk with her. Seeking arrives at her new job at the printer. Uncertain what to create, she stares into the void. She gets up and looks out the window and a raggy stray who has dragged Past Transgressions to her office door. She brings in the stray, and creates a makeshift bed for him out of a box and a blanket. She opens the suitcase and stares at its contents, horrified. She looks away in disgust. Nourishment senses trouble, and sends the people of the house to her work. They arrive in time to catch Seeking as she falls from her stool.

They gather under the blanket and the stray joins them. Curious about what is in the suitcase, Dreamer crawls over to it and pulls out a nail. She looks over at Seeking, who buries her head into Nourishments arms with shame. Dreamer pulls herself up and looks into the suitcase. It is full of nails. Dreamer looks sad. The stray comes to cuddle with her. Then Dreamer gets a big smile on her face and runs out of the printer with the stray. Dreamer collects the owner of the hardware store and  whispers into his ear. He smiles, then nods. Dreamer then runs back to the printer to share her idea with Seeking.

Seeking picks herself up, dusts herself off, and starts back to work. Dreamer, the hardware store man, and all the members of the house settle into a routine. Seeking creates beautiful art at the printshop, works at the house to plant her garden, and put money in debt and future. She workings with the hardware store, with a handful of nails at a time from past transgressions, and nails them into an unknown structure. The town starts to take notice. Feeling bad for judging her, the townspeople work to scrub clean the canvas straight jacket and dismantle it. Each member of the town works to recreate the jacket into something else very colorful.

A year has passed. Seeking is happy. She has friends in Nourishment, and other members of the house. She has a flourishing garden, at the house, and debt is gone, and future is filled. They stray is healthy, and the towns people are happy too. There is a party in town today. Dreamer and Seeking have used up all the nails in past transgressions. As they are walking to the party, they see the old woman approaching. She is carrying loneliness. Seeking takes the suitcase from the old woman and they walk together to the party.

They arrive to see all the members of the house, the stray, and the towns people standing in a big group together. They part and the group reveals a beautiful wooden sailboat built with the nails from past transgressions. At the mast are Security and Sustenance, who raise a flag made of the old straight jacket. On the flag is a Print work made by Seeking. Seeking looks down at the suitcase. She uses a rag and wipes off all the letters of loneliness, except the first L,O, and E. She Writes in a V to spell Love.

The old woman, the members of the house, and stray board the boat and sail from place to place, bringing security, sustenance, nourishment, and love to all they meet. They are not afraid to dream, fail together, and comfort one another. The town they left behind is all for the better too. The house continues to take in seekers, and is run now by the townspeople.

As the sun sets over the water, Nourishment and Seeking hold each other in love. The old woman gleams, and Dreamer looks ahead with excitement. Stray looks like captain puppy, and the couple plot the way. The sunset creates a silhouette of Seeking and Nourishment, until the screen is black.

WORDS ON SCREEN Free of judgement, the act of one becomes the love of many. Love louder.

When I wrote this, I had pictured each word as a separate person.  People who saw what a person needed and did that to help.  But since then, I have learned I was wrong.

The only person I needed to meet was compassion.  By allowing myself to be Seeking and chasing my dream, I was open to receive compassion.  Compassion came when each person on my path wrapped me in their friend blanket, and those people are real.

I have allowed myself to be loved.

Over the past 3 years as Seeking I have met some incredible people.  Their friend blankets are warm, strong, and always hugging me with the deep compression I need.

So what about Nourishment, Dreamer, Security, Sustenance, and the stray?  They are all within me.

Nourishment is my curiosity and sense of adventure that feeds my mind with knowledge and experience.

Dreamer is my childlike wonder that allows me to see the world in infinite beauty.

Security is my strength that keeps me fighting for what is good and right.

Sustenance is my endurance and tenacity that keep me rowing this old sail boat even though the wind is not yet blowing.

As for the stray, he comes around from time to time to remind me of my failures.  So I feed him, and hug him, and I have forgiven him.  Stray is my past, but not my present or future.

And you, Phoenix, you are the fire that keep me warm.  So maybe the story didn’t start out with the right idea; it became so much more.  The compassion of others wrapping me with their friend blankets helped me to be all I needed to be.  To my wonderful friends, and family, I say to you;

Thank you for your compassion, and for loving me so loud.

Until tomorrow,

Laura (snamuh)

Time to Be Naked and Return to Innocence

Time to Be Naked and Return to Innocence

Dear Phoenix,

I posted on Facebook yesterday about the hate and violence infecting the US.  I was moved to post something because silence seems wrong.

In my post I had noted that for 22 years, no one bothered the Boston Holocaust memorial. Now it has been vandalized twice in 6 weeks.

White-supremacy is not acceptable.
Racism is not acceptable.
Bigotry is not acceptable.
Rape is not acceptable.
Misogyny is not acceptable.
Child Abuse is not acceptable.
Violence towards others is not acceptable.

I will not apologize for believing these things. I will not tolerate others around me abusing or mistreating others. I will continue to love others, and I will be continue to be non-violent, but I will not be still. Hurt someone I love and I will become the wall between you and them.

This statement is strong, but required no energy for me to say when faced with atrocity such as Charlottesville. I struggle with words and emotions, but in defence of my fellow humans, I struggled none.

Today, as the rage continues, I was overwhelmed by this question in my mind.  So, at the risk of backlash, I have a question I must ask:

It is commonly viewed that if I were to walk down the street naked, and was sexually assaulted, it would be my fault. Even if there are those of us that disagree, it is still the common view. It is not seen as freedom of speech or expression, but as a call to action.
 
How is that being naked is a call to action, but carrying a known symbol of hate and murder, such as a Swastika, is seen as freedom of speech?
I can’t help but wonder when we will liberate ourselves from hate and fear?  When will we be able to return to that beautiful innocence of childhood – innocence not as ignorance, but as one who is harmless, lacking guile, and seeking only connection?
Maybe it is time.  Time to be naked, from the inside out because fear and hate can only survive beneath the cloak we hide behind.
My thoughts for today.
Love,
Laura (Snamuh)

The Story Behind – As the Ice Speaks

Dear Phoenix,

I have been thinking about my students today, wondering how all of them – past and present – apply what they learn in music class to life.  It never occurred to me that my students got anything from lessons other than learning the instrument until I got the opportunity to observe a friend working with his students.

It was my first time observing teaching in the sports venue, and honestly it was one of my first hockey games.  The ice has a particular energy that stadiums and fields lack.  As if the life giving qualities of water speed up and push upward from the ice.

The players hit the ice, and the music started to flow.  The harmonious melodies of the the players indicated they were more like a family than teammates.  Music gently journeyed to my ears, despite the intense energy of the game itself.

As my gaze shifted over to the coach, his shadow song rose up but never overtook the melody of his team.  Like the flower to the butterfly the coach’s energy fed the players.  his melody supported theirs.

It was stunningly beautiful.  As the ice spoke, the players bonded and the coach pushed forth his energy out of pure love for the kids.

When you listen to this piece, see if you can find the ice speaking, the players song and the coaches melody.

As always, I am grateful for your autism energy, my dear Phoenix.

Laura (Snamuh)

 

Teaching Phoenix to Climb

Teaching Phoenix to Climb

Dear Phoenix,

It has been a few days since I last wrote to you, but something amazing has happened.  I am in Alta, Wyoming attending the wedding of a good friend of mine.  She wanted my shadow songs to accompany her wedding on the top of a mountain facing Grand Teton.  It is beautiful.

To arrive at ceremony spot, I have to ride a ski lift to the top.  This is a new experience for me, and you seemed to be upset with me pushing you for this new experience.  I know it is you, Phoenix, that makes possible the shadow songs I play, but it is also you that makes my body not want to seek adventure.  Knowing I would have to push you, I rode the ski lift twice yesterday, each time helping us regulate the experience together.

The first ride up the lift, my body was tingly and my stomach vibrating.  The experience of travel the day before already had me reaching for the tummy meds, but this was pushing you over the edge.  You began to burn, blurring my vision with bright shades of yellow, white, orange, and red.  The ground moved far away, and the texture on the trees pulsated.  You wanted to cry and run away, but I wouldn’t let you.

I counted the ticks of time in my head, an echo in my mind’s ear of the grandfather clock at my parent’s house.  I pushed you hard to take in the views of the mountains, and bow to the Aspen trees that applauded us with their leaves.  By the end of the first ride up, I knew you were ready to burn down the house we live in.  You got brighter and louder, almost obscuring my vision totally as we left the landing pad and headed down the mountain.  It was a friend on the lift with us that added deep compression to my shoulders, saving me from displays of rocking and hand rubbing.

I knew I needed to do it again, so we headed up for the rehearsal, this time with Giuseppe (my violin) in tow.  With a violin on one shoulder, and deep compression from a friend on the other, this time the ride was more pleasant.  Anxiety turned to excitement.  Now it was an adventure and you were on board.

After the lift arrived at the landing pad atop the mountain.  I walked with the wedding party to the edge of the mountain, with a clear view of Grand Teton just behind us.  The shadow songs began to dance and once again Phoenix and me were one.  I played for the bride, and I think she was happy.  After, I walked Giuseppe to a pointy edge, and stood upon a rock.  I started to play but the wind pushed my bow off the strings.  I knew the wind wanted me to sing to the snow filled creavases of Grand Tenton, so I turned 10 degrees east and played out loud.

Just then, the wind reached out with its soft hands and cradled the music that Guiseppe sent to her.  The notes bounced and scattered upon her back until they spread like waves of light upon the mountain face.  The mountain was so happy, she kept the notes, never sending them back to my ear.

We rode down the mountain, and Phoenix was at peace.  My tummy calmed, and my mind was content.  You see, adventure is the hinge-pin of human growth.  I can now say, “Phoenix and I played the shadows to Grand Tenton, and the mountain gave us her peace in return.”

The wedding is today and I can’t wait to tell you all about it.

Love always,

Laura (Snamuh)

The Day I Was Wrong, and it was Fantastic.

The Day I Was Wrong, and it was Fantastic.

Dear Phoenix,

Presuming competence is the foundation for effective special education.  We can no longer build models based on repetitive behaviors, rewards, and exclusion.  Our lack of understanding as educators must be the curiosity incubator rather than the cage that causes us to recoil when our foundations and pedagogies are questioned.  We must evolve from the mindset of you must learn to fit in and change into I was wrong so let’s learn together.

Curiosity did not kill the cat, repetition did; adherence to the thinking that what worked once will always work.

My first person understanding of disability did not insulate me from error as a special education teacher.  My insight allowed me to presume competence and then allowed me to test my theories on myself.  Before I tell you my story, Phoenix, I wish I could ask the NT world to settle into their posture, put on some relaxing music, grab a hot beverage and prepare to absorb my ideas with a fresh perspective.  I dare not say open mind because I do not want to set the stage for inactive absorption.  I’d rather they listen actively, react, get mad if they need too (I find having paper to crinkle and throw is helpful).  Just be ready to consider something new.

Our brains will thank us.

***********************************************

No one had ever taken me seriously before, not like this.  I had been a freelance teacher for 20 years to a wide variety of leaners.  In my 20 years of teaching to that date, I had students with ADHD, hearing impairments, and even non-verbal ASD, which allowed me to develop a few theories and interventions in education.  My against the grain thinking had gotten me uninvited more than accepted, and limited me from traditional teaching positions.  No matter, the work was rewarding.  I was teaching students other teacher’s couldn’t teach.

THe results were obvious to parents and those closely involved with the students, but I always seemed to hit a wall of disbelief among fellow educators . and schools.  Most of my “how about we try this” moments were answered with “that’s a nice dream but it won’t happen.” It was frustrating.

So you can imagine my surprise when Hirsch Academy in Decatur, Georgia called me in to discuss starting a music class.  I told them my experience, and my dream, making all of these bold statements that anyone, and I mean anyone, can learn to play music.  After I finished my presentation, they said, “Ok, let’s do it.  What do you need?”

[insert draw dropping emoji here]

They said yes, with enthusiasm.  I was walking new territory and I had no idea what to ask for. The leaders at Hirsch wasted no time.  They contacted every student, getting half of their student body to enroll in lessons, put them in contact with me, created space in their school, and help me set up a schedule.  Not only did they create space in their school, they created space in their community for me.  They introduced me around to parents and professionals in the community.  A few times they hired me to speak to parents about living with Autism, hoping that my message would add support to their community too.

This level of presuming competence was unparalleled.  The leaders as Hirsch;

1 – Presumed competence in their students by believing they could learn to acquire the skill of playing an instrument.

2- Presumed competence in me as their teacher, seeing my autism as a valuable asset and insight needed to balance out their environment.

3 – Set up the environment to ensure success, never once placing me in a closet or making me hang out alone after school.  I was treated as part of the faculty, and interacted with the other teachers.

4 – Created flexibility in their acceptance and supports so we could learn from failures and improve what was offered.  They never allowed any one else’s doubt to set me up to fail.

5 – Installed me into their community to give me support, and infuse me with loving energy.

Wow.

No goal was too lofty.  What we were trying to achieve was never reduced or discouraged.  Instead they helped me to facilitate a realistic timeline for a student’s goals.  This allowed me to dream with the students, and explore the marvel of music.

Day one of classes approached, and I was bursting with energy.  I got set up, and laid out all the instruments for the kids to try.  Each student entered excited, and nervous, about the possibility of exploring a musical instrument.  I was living a dream, and they were getting to dream.  It was perfect.

A little after noon, a student came in with a good bit of body control issues.  This student was non-speaking.  (I am intentionally keeping their identity quiet.  Her is meant to be gender neutral as this is meant to be a combined experience of two students.) I placed the instrument on her shoulder and helped her play.  As she started to grasp what to do, I was stunned by the stark realization that I was wrong.

I had come into the school, after a few years of experience teaching another non-speaking ASD student, believing that I just needed to break down the pieces.  But I was wrong.  My first ASD student was in early primary school and though this approach was good for her, older non-speaking students would be insulted.

The more I realized I was wrong, the more excited I got.  I was wrong that they needed it broken down, they were capable of much, much more.  You and I felt the Autism energy, Phoenix.  An energy exchange that I cannot explain to NT people, but is an obvious language between people with Autism.  I could feel this student screaming inside.  I needed to help her get out.

That evening I went home and I was up all night.  I went into restructure mode, replaying my entire repertoire of music in my mind.  This is a bigger process than you think because I have every piece of music I have ever played memorized and catalogued in my head – though I forget the titles often.  WIth each song, I rebuilt the method and realized that for a student like this to study music professionally, I was going to have to change everything.

Here is what I discovered –

1 – Do not break it down, pull it apart.  People with Autism are fighting our bodies ability to communicate with the mind.  Yes, shorter steps can be helpful, but that often leads to oversimplification.  Don’t make it lesser.  Unbox it and let is explore.  We learn all the same pieces, but we don’t assemble them in the same order because we have to start where our bodies are least limited.

2 – Repetition has it’s limits.  We reach maximum absorption of new concepts that are related to purposeful motor.  Intellectual concepts are dry, so we soak those up fast.  But purposeful motor is heavily saturated.  We need time to absorb motor, and each of us at different rates on different days.  Our ability to absorb motor changes as frequently as the weather, but that doesn’t mean we won’t come back to it.  I learned to push motor to a point, and then MOVE ON TO SOMETHING NEW.  Waiting until acquisition of skill was proved was torture.  Students get it, I just return to it later.  Like sweeping up sand, we can’t get it all the first go around.

3 – Deliberately differentiate between Basic and Simple.  Basic skills are the foundation points for learning anything.  Beginnings are fine, and we all start there.  However, special education has this problem with making things Simple.  It’s a way to waterdown concepts because the approach is that kids with disabilities cannot learn like their NT peers.  Basic is the training wheels.  Simple is the tricycle.

4 – Independence is not yoked to skill acquisition, it is a result of self-advocacy.  A student can learn to do everything they need to life an independent life, but without self-advocacy they will not have the self-confidence to try, accept failure, and know when to ask for help.

Ok, the 4th one I already knew but I learned I was right, and then some.  The beauty of this was I was finally able to express my ideas, test them, be wrong, and then grow them all because someone said, “we believe in you” and then made sure the road didn’t crumble beneath my feet.

That is presuming competence and the amazing result of letting us fall.

Until nest time,

Laura (Snamuh)

Vendergood

Vendergood

Dear Phoenix,

Vendergood.  It’s a real thing.  Sometime in the early 1900’s a rarely known man by the name of William James Sidis created a constructed language called Vendergood.  He combined Latin, Greek, French, German and other Romance languages to create his very own.  He had taught himself 8 languages.  He did this by the age of 9.

Intelligence is one of many aspects we have decided to measure in humans.  But it remains a mystery to me why we believe we can truly quantify intelligence and what good it does us to filter learning potential.

My fellow Autistics who are non-speaking are often given assigned IQ’s below 70 (labeled as definite feeble-mindedness).  In college, I argued that the reasons for this was not that non-speaking Autistic people are feeble-minded, but that the tests used are socially, verbally ,and culturally biased.  My view was not a popular one, and my theory was dismissed on that basis that I had no empirical data.

But, they didn’t have Empirical data to support that low IQ was comorbid with non-verbal Autism.  No one finished the test, no one created alternative measures.  Failure to finish the test was assumed to mean incapable, unable, and incompetent.  So I was to accept this with no formal study, but my theory was trash?

Let’s go back to Sidis a moment.  He had mastered high level mathematics at age 9.  Shortly after he became the youngest person to attend Harvard, finishing his Bachelor’s degree cum laude at age 16.  At age 17, following some bullying at Harvard over being a pacifist and recluse, he became a graduate fellow working on his PhD and was given a job to teach at Rice University.  He taught maths for one year and then left.

Sidis talked about wanting to live celibate and isolated.  He struggled to understand people. His parents intervened often for him (they got him the teaching job) as Sidis struggled for independence.  He was arrested at a socialist May Day parade that turned violent in Boston.  Stories about his life certainly indicate that people were difficult for him to understand.

His sister declared that his IQ was the highest ever recorded.  No proof exists of this, but the rumors remain that Sidis had an IQ between 250 and 300.

What?

Never mind that the IQ test was never meant to measure that high with 180 being the top score on the Stanford-Binet.  So, this could easily mean that scores above 180 are estimations with larger margins of error. Nonetheless, what could one possibly benefit from having an IQ of 300?  Or even 200?  And how do we score that?

If we start using IQ measurements to explain intelligence after otherwise unexplainable intellectual anomalies like Sidis, none of us have a snowball’s chance in hell of being anything shy of a bumbling idiot.  William J. Sidis had shown some amazing promise to learn everything really fast, but what did it get him?  What contributions did he make?  He spent the rest of his life running adding machines, and obsessively collecting streetcar transfers.  He published one book and held a patent on a rotary calendar. He died alone from a cerebral hemorrhage at age 46.

What if no one “discovered” Sidis at a young age?  What if Harvard had denied the boy access to University until he was proper age?  Would they have believed such intelligence came from an adding machine operator?  Would Sidis pass the SAT’s or even qualify for a scholarship to attend Harvard in the 21st Century?

What if Sidis were non-verbal?

Take into account Stephen Hawking, another exceptional mind.  Dr. Hawking is bound to his chair unable to speak, but his IQ is still estimated to be over 180.  Would people still believe that if he had made his achievements in science after ALS took away his speech?

Neither Sidis nor Hawking have a published IQ score to date.  Their IQ’s are estimates made purely by onlookers looking to categorize human achievement.  Now I am not denying that Dr. Hawking’s intellectual capacity is higher than average.  But what a travesty it is to throw around this number post-achievement, yet also use it to create exclusive access to education among children.  In the disability world, an early IQ assignment of 70, creates barriers that imprisons the minds of the non-verbal, while also adding undue weight to the academic achievements of speaking ASD kids.  For everyone else it creates the illusion that world changing ideas come only from people with IQ’s over 140 (genius).

Google DaVinci’s IQ and the number is 220.  What the f_ _ k?  How did DaVinci get such a high score on a test invented 400 years after his death?  If DaVinci were alive today he would have been yelled at by his teachers about how he would be a starving artist, have his journals confiscated by the police, and likely subjected to hundreds of hours of therapy for creating sketches of inventions that look like devices to bomb the school.

The sad truth is we give posthumous vanity IQ’s and honorary appointments to amazing thinkers long after they could have benefitted from acknowledgement, mostly to make us feel better about kicking them around while they were alive.  Innovation doesn’t come in a clearly marked bottle safe for human consumption.  Innovation is unstable, anti-social, irreverent, and chaotic.  If we all saw it coming, we wouldn’t need innovation.

Sometimes intelligence is easily recognized, but most of the time it is not.  Especially when it is unspoken.  But unspoken does not mean silent.  Unspoken words are the loudest to those who have learned to listen at a different frequency.  The dog is not crazy for hearing the whistle that is silent to humans.  Just as I am not crazy for hearing the intelligence of my non-speaking Autistic mates.

You are howling, my dear Phoenix. Now let us show them what they are missing.

Laura (Snamuh)