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.

Open Letter to ASHA on RPM

12 June 2018

Dear Board of Directors,
I am responding to the ASHA committee’s conclusions on FC, RPM and other typing forms of alternative communication.
I am Autistic. I am also a music teacher, celebrating 25 years teaching this year, and a parent of an Autistic teen. My non-speaking students learn to play violin, viola, and cello from me acquiring the lifelong skill of playing independently on the instrument. This is not just as a fun therapy; my students actually learn music and learn to play their instruments.

While I was at Agnes Scott College as a Psychology major, I became involved as an Autistic Advocate, voicing my thoughts for the benefit of others. Fifteen years later, we have significantly more evidence to support theories on how the brain works than we did when I started on this path. However, I feel as though I am still having the same discussions over presuming competence, despite the emerging research supporting the idea that those of us with Autism are capable of significantly more.
I encourage you to take a moment to read the emergent truths that research has brought to us because autistic people like me choose to participate in this research for the betterment of Autistic lives. As a violinist, I would much rather spend my time playing my violin, but I choose to participate in research and be a voice because, until very recently, people like me were locked in hospitals. RPM and spelling-to-communicate are advances in thinking brought to us to help free Autistic people from the confines of their inner selves and express not just our physiological needs, but our hopes, dreams, and desires to be a part of a loving world. This is not abuse, it is freeing us from abuse.

If you think we are using these kids as our personal mouthpieces, then you give us way too much credit. In order to create the proposed illusion, a parent, as a speech partner, must create an entire being different from themselves, create different vocabulary, and continue this effort with amazing consistency. I love and appreciate the parents I work with, but none of them are so clever and devious as to pull of a hoax of this magnitude for this long with this level of consistency. In fact, there is more than enough evidence to support the amazing evolution a parent would have to go through to be multiple people and not be recognized immediately by the professionals they encounter on a regular basis.

As a professional or teacher, I would have to maintain not one illusion, but hundreds of illusions with precision. To spend my professional time and creativity developing a hoax or illusion of this magnitude would be a waste of my time. As a professional, I have spent hundreds of hours sharpening my skill as a violinist, a performer, and a music educator. Expanding my teaching base to include students with disabilities, especially those who cannot communicate by traditional oral means, adds a significant workload on me as a teacher. I have had to restructure pedagogy, create new approaches, research multiple communication modalities, and create a balanced physical space to welcome these students in. I gladly take on this responsibility to make music accessible to all students who wish to learn, consistent with my Suzuki Method training of “every child can learn.” All students, no matter their diagnosis, pay the same rate per hour, eliminating financial gain. My motivation is strictly to share the love of music, and I do so successfully even with non-speaking students.

To that extent, as a professional, I would like to note that musical talent occurs at the same rate in my non-speaking Autistic students as with my neurotypical students. Some non-speaking students play with more accuracy than others but they all do so independently, and not because of savant syndrome. Given the hierarchical structure of the brain in regards to musical thinking, it seems to me that a cognitive delay so profound that these students are not able to independently speak using a method such as RPM, then it would stand to reason that they would also be unable to acquire the bilateral, complex skill of playing music on a violin independently. I would be quite the magician if I were inadvertently channeling my musical talent through them.

More importantly, why would I put energy into creating the hoax? We as advocates subject ourselves to constant scrutiny. We expose our deepest and most personal thoughts because we love the world we live in and want to be part of that world. I am Autistic and I have my own voice. I am officially diagnosed and received disability accommodations at Agnes Scott College. I was open about my diagnosis and voiced how it felt to have my sensory system on guard all of the time in very public ways so as to educate my fellow college classmates. I struggle with spoken language and have yet to successfully learn to speak a foreign language despite being raised around one. I was open to my classmates about how language was an issue for me, not in forming words with my mouth but in communicating effectively. To this day, I experience loss of speech when overly stressed, overly stimulated, or tired. Being open about this in a public forum opens me up to scrutiny. To get up everyday, go to school, and subject myself to constant trial and error was my choice. This was so because I was the first openly autistic student at ASC and I felt I could play a part in supporting other Autistic people that want to be better than subminimum wages, housing projects, and juvenile activity groups. In the spirit of eliminating financial gain, it is worth it to mention here that I personally still carry a $20,000 debt from college I cannot seem to payoff. Being open has not given me a nation of unsuspecting minds to rule or money filled pockets. But it has given the next generation a foot in the door.

My fellow Autistic people who use a letterboard subject themselves to this same energy depletion and scrutiny because they are the first. Being open, being the first means we take some pretty big sacrifices beyond the scrutiny and judgement that impact our daily lives and rights as humans. Why would we subject ourselves to all of this? Because the real cruelty is returning to the days when potential was not recognized.

RPM and other systems like it are the conduits that bring the inner intellect to the ears of a mostly verbal world. Similar to sign language for the deaf, the system requires knowledge of how it works and an interpreter for those on the outside. If I were, as a dancer, to learn a dance number and suddenly invite another person to dance with me, the steps would be clumsy and the chemistry off. As people with Autism, our communication partners, our educators, and our therapists must be able to dance with us. We must be able to trust them and see that they presume our competence, cherish our personalities, and avoid shoving us into the pigeon hole of normality. To remove access to this method simply because you do not know how to dance would be as cruel as cutting out the tongue of anyone who sings because we dislike the music.

More research is needed, and on this point we agree. Researcher Dr Vyacheslav Ryabov, in a study published in the journal Mathematics and Physics, found that dolphins can communicate using their own language. These types of discoveries are made because we wish to understand more about dolphins and how nature can help us develop further as humans. I would encourage anyone who wishes to understand the human mind to an even broader depth than we currently know to research non-speaking students and their preferred methods of communication. This issue with RPM and the like should be embraced as an amazing moment of wonder, open minded collaboration, and the next step in the human’s need to be understood.

Thank you for considering my opinion.
Laura Nadine

My Spectacular Meltdown of 2018 and Why I’m Still an Alien

My Spectacular Meltdown of 2018 and Why I’m Still an Alien

I’ve just had one of my most spectacular meltdowns.  As an adult on the spectrum, living independently and being a single parent, many people assume I have gotten past these types of hurdles.  Meltdowns, or breakdowns as some people call them, play in the minds of typical people as a behaviour associated with juvenile emotions, inexperience, or simply being overwhelmed.  This is because most people lack the knowledge to see meltdowns for what they truly are – a hybrid of an existential crisis, depersonalization/ derealization, and Aporia brought on by Normopathy and extreme empathy.

 

Normopathy isn’t discussed often being comorbid with Autism, but I think it is a perfect fit because it is a logical state of being for teens and adults on the spectrum following years of deficit focused therapy. A person who is normatic is often obsessed with doing only what is expected by society.  It often robs the autistic person of a personality because any individual traits are placed under the microscope in our minds as we compare it with accepted norms. As with any unhealthy obsession, it becomes nearly impossible to accept any small deviation from what we understand as being normal.

 

In the mind of someone who has Autism, this deviation is seen as breaking rules rather than just merely social norms.  The binary way we view societal rules is not because of our innate wiring to do so, but because almost all models of early interventions are binary and rewards based.  As we grow older and we fail to receive the reward for our social compliance, we create an even more simplified metric, breaking it down again and again until the two points of how-to-be and how-not-to-be are diametrically opposed with no question of grey area. This is particularly problematic for social skills since societies rarely work this way.

 

This extreme normopathy leads to a break down, where the normatic person cracks under the pressure and either withdraws or self-harms.  In rare cases, a normatic person might try something dangerous like running away, breaking something, or losing control over their body.  Let me be clear that with normatic autistic people, violent behaviour is very rare and is never malicious.

 

Now caught in a loop we can often go into meltdown especially following several normatic pressure breaks.  As an adult with autism I have learned to reign in the normatic pressure breaks and keep them from pushing me over the edge.  But as we age, Aporia can add an extra razor like edge to this battle of retaining our personalities and trying to fit into societal expectations.

 

Aporia is best described as that feeling you get when you have just discovered something you believed in wasn’t true, but then still believe it might be true.  It is that oscillating feeling between believing myth and seeing truth. Aporia is common in childhood as we come to realize our favourite stuffed bear cannot actually talk to us or that no matter how hard we try, we can never fly with a cape.  Though much more rare in adulthood, it is still common for Autistic adults. It is not so much with the battle between myth and truth, but rather in the battle between what we expect people will do and the following interpretation of what they actually do.

This bonding of Normopathy and Aporia is like trying to stand in the shadow of a tree without being able to predict that the time of day moves the shadow.  As the shadow moves and changes shape, I must also move and change shape to hide within the bounds of the shadow while holding on to the expectation that time and the tree are static, fixed points.  I become so fixated on trying to follow the shadow, I forget I am not a tree.

 

As the night time falls and I try to sleep, I enter an existential crisis.  Does my life have purpose? Why am I not like all the other trees?

 

The meltdown begins as I feel detached from my body.  My mind is now outside my body observing the body move, but with no real connection to those movements.  My emotional colour fades to a blurry shade of grey and experiences no longer seem real – like floating around in another person’s dream.  Suddenly it feels as if I am vibrating with the emotional energy of every person on the planet, feeling all of their pain and joy at once. It is an immense, bright energy like when a massive star dies, and then collapses into a black hole.

 

A black hole is not just a hole of nothingness.  It is a compact mass in spacetime from which nothing escapes.  Once I enter the black hole state of a meltdown, I must capture my thoughts, process them, and then run the gamut of emotions I have not been able to process.  This part of the meltdown seems to happen primarily at night when the rest of the humans around me are sleeping and therefore not broadcasting their energies to me.

 

Now comes the real work.

 

Capturing my own thoughts outside the bounds of deficit focused rewards therapies and societal expectations is actually rather liberating, but totally immersive.  Because I have ignored my inner cogs and weakened my own broadcasting of energy, I form a metaphorical cocoon forcing me to focus on my own transformation.

 

Though these meltdowns interfere with my ability to properly handle my daily tasks, I find them necessary and critical to my personality development.  Much like Dabrowski’s theory of personality development, meltdowns are a “disintegrative” process that is an overall positive process.  It allows me to retain true individuality and integrate into society independent of my childhood state which was constrained by biological impulses and uncritical adherence to social convention as taught by those responsible for rearing me.

 

As teens and adults with Autism, we must experience psychological stress and anxiety in order to grow independent and be who we truly are.  No matter how hard therapy and behaviour modifications try, I will always be an alien on this planet. I can never be Neurotypical, nor can I be less Autistic. I an be more independent, stronger, and wiser.  My struggles are real, but that is no reason to restrain my inner butterfly.

 

Back to my recent meltdown.

 

This meltdown was particularly hard because it was weighted by several large life changes all at once.  The heaviest piece was my work as an accidental advocate.

 

There are two types of advocates – those who become advocates because they feel it is their life mission, and accidental advocates.  Accidental advocates are people, like me, who have a diagnosis and were therefore more or less expected to share our experiences. One day I stood up and argued with a presenter about being autistic versus their outside perception of autism and voila, you have an advocate.  I don’t mind it and I am certainly not bitter about it, it just wasn’t something I planned to do.

 

The more I spoke up, the more people listened, and the more I realized I was often the only one with Autism in the room.  My voice was among the first to push through the prevailing dialogue that was lead mostly by observers who were not Autistic.  I was not only among the first to speak for myself, but among the first to defend the intellect of the non-speaking Autistic community. I constantly faced a barrage of disbelief and resistance as I spoke of presuming competence.  Every time I spoke I found I was breaking through barriers and forcing open the doors. I couldn’t stop because I knew it was ultimately the right thing to do for those yet to come.

 

All of this has come at a great price of never living the benefits of what I fight for.  Now, in my 40’s, I am still on mostly uncharted territory of Autistic life beyond therapy, supports, and institutions.  I am immensely proud of the outcomes and how younger generations of Autistic people are living better lives. Presuming competence is starting to dominate the autism dialogue forcing even Autism Speaks to change their position – something I never thought I would see.

 

Though the price is worth it, there are times I am overwhelmingly crushed by the loneliness and isolation of being among the first.  In February of 2018 I had begin to break and everything I produced became scrambled like the Enigma Code. Words came out in the wrong order, even in my writings,  causing me to have to redact an entire blog post.  I found myself constantly distracted, unenergetic, hopeless, and eventually wanting to delete all of my work and disappear.

Drawing a line?

It is hard for me to create a rigid dichotomy between self-care and selfishness.  I feel guilty every time I wish for recognition, but it is true I sometimes wish for that especially since recognition often comes with the financial stability I still seek.  

 

But then I realize I am among the first and that is truly the most spectacular place to be an individual.  With so few before me, I get to explore the unknown universes of the human experience. I get to take the risks and make the mistakes that can lead to true discovery.  No matter how many times I must cocoon, I cherish each of my inner butterflies as they fly out in their figure eight patterns and flaunt their spectacular colours.

 

I didn’t give it all up.  Not this time anyway. As is my true nature, I am fueled by my tenacity.  I must admit that I get a special kind of buzz every time I see a post or read an email from a person who feels my work has helped them, but that is not what I seek.  The struggle is still very real but I am still an Alien, and that is just fine by me.

They’re right, I’m a Nothing?

They’re right, I’m a Nothing?

Dear Phoenix,

It took me 3 days to prepare myself to make that phone call.  Phone calls remain my one major test as a person with Autism, my Kobayashi Maru.  To most people, this sounds silly or trite, but for me it is real.

For those of us who struggle with communication, the phone can be confusing.  Many unexpected factors and the inability to read voice tone means I am often stuck in a loop trying to interpret meaning.  When the frequency of the voice changes, or their word pacing differs, my brain gets stuck on the pattern and loses the meaning.  It is as if the words change to meaningless syllables and ticks.  As a result, I miss much of what is said, making my answers sound off.

Speaking to people in person is a struggle too, but the phone adds an extra layer of problems.  This is because all of my adaptive techniques to better understand people require context, body movement, and the energy off of the person to interpret them.  Social skills training focuses on nonverbal cues, which are impossible to read on the phone.  Somehow, NT people are able to use nuanced voice tones to make up for this.  I am not.

Nevertheless, when people call me, I return their calls though it make take me a few days.  They ask me questions, and I try to answer.  Often times the conversation is awkward and has me breaking the flow constantly.  I never know when they are done speaking, and if I pause too long, they speak again.  Round and round we go, they want an answer I can’t give.

Talking on the phone is one of 100 issues I navigate daily.  Learning to live with you, Phoenix, requires a highly tuned level of focus and the skillful application of my self-taught adaptation techniques.  When I leave the house, I power on my mental systems to actively think about:

  • Navigating around people while walking
  • Filtering relevant sound from irrelevant sound
  • Organizing neurological input and channeling it elsewhere so as not to be overstimulated (I compose music in my head from the sounds around me)
  • Processing emotions often from the 2 or 3 weeks previous
  • Counting so I don’t focus on the rhythm of my steps and get lost (please don’t ask me how many steps I take.  I count to 10 and start over.  It’s not an obsession, its an adaptation)
  • Organizing my word muddle into comprehensive sentences (word muddle is what I call the constant internal monologue which is often just the rapid firing of vocabulary)

These are just a few things happening in my active mind while I am working through my day.  This process is only calmed when I play music.  True, most people process this stuff, but they do it passively, somewhere in the background, like muscle memory that no longer requires active thinking.  My mind processes all of this as if I am learning about it for the first time.

It is hard, and requires so much energy, but it is worth it.

The need to be understood is desired by all humans, and I am no different there.  But to understand others, to connect with them, that is center to my being.

I love people and I want them to feel welcomed on earth, loved by others, and when they talk I want to truly listen.  To do this I must work to exhaustion everyday, but I can’t imagine living life in a void.  It is nice when I make friends, but the most satisfaction I get is knowing I have given something to this amazing world.  I like being useful, and being able to offer help to those who are suffering,  To watch a lost human light up is amazing.  Their energy goes from grey to bright colours, illuminating the air around them and creating the most beautiful music.  It is the same magic as watching a broken Carousel come back to life.

When people are engaged, understood, and loved they glow, projecting their loving energy on everything around them.  Sometimes all it takes is one person to say “I hear you.”

So, I get up everyday with the purpose of loving others.  I fight the fires of you my dear Phoenix, and sometimes I channel your energy, and I count, and I walk, and I tame the inner dialogue and I write music.

But that phone call…that phone call was hard.  And so were the many others before it when they said;

“I know you can’t really understand how I feel.”

“You’re so high-functioning so maybe learning empathy was easier for you.”

“Are you officially diagnosed with Autism?  Maybe it isn’t Autism.”

“How can you teach my kid to survive in the normal world if you have the same problems?”

“Maybe you think the students understand you, but really they don’t.  Maybe you need to believe they understand you.”

“I think sometimes you confuse your emotions.  You think you are happy, but you don’t really feel happy.”

“My son has Asperger’s, not Autism.  I can’t have people thinking he is retarded.”

“You have a special musical gift, but you aren’t a good fit for what we are doing.”

“Really? You already passed a background check at another school? Huh.” (Yes, someone actually said this to me after learning about my Autism.  They were surprised that an Autistic person was qualified to work with children.  I’ve been teaching 25 years.)

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When I was a child, I enjoyed playing with a talking toy called Teddy Ruxpin.  In one of his adventures, he travelled to a forest where the creatures there could change shape.  They called themselves “Nothings” because they had no shape of their own.

They’re right.  I am a nothing?

At least that is all they will ever see.  And as long as they are stuck seeing me as a mindless, out of control, emotionless being that is a threat to public safety, then I will remain a Nothing.

My accomplishments as a professional are vast.  I have won many awards in music, and taught hundreds of children to play music.  But these accomplishments are constantly diminished by the inability of others to see past the diagnostic criteria.  The worst part about being Nothing is being invisible.

These people who fight me, these people who see me as Nothing, they are not strangers.  The general public has issues but they have actually grown a great deal on acceptance.  It is disbelief in the Autistic community that is hurting me.

Some parents, professionals, and the many support organizations out there are fighting the wrong battles.  The cure dialogue has dominated the industry to the point that Autistics coming into adulthood are not prepared to live a long life with Autism.  While arguing over whether or not we should say “Autistic Person” or “Person with Autism” the big money organizations have hijacked the focus of research and therapy.  While we are still arguing over vaccines and gluten, hundreds of children were forced to have bleach enemas to cure their guts of Autism.

They thought they were Nothings.

By the end of Teddy Ruxpins adventure to the forest, Teddy realizes that the Nothings are truly remarkable.  He renamed them “Anythings” because they can be anything they want.  There is a big difference between nothing and anything.  To be nothing, I must be void of all life.  To be anything, I must be overflowing with life.  But I can see why some like to see people like me as nothings.  To take nothing and make it something is a 100% improvement on an IEP report.

But if I am an Anything, I am already filled with potential.  All I need is someone to say, “I hear you” and mean it.  And if I am an Anything, and I choose to fight the fire for the love of others, then I have empathy.

If we are going to make any progress in the Autism community, we must stop trying to make something from nothing.  As Teddy Ruxpin said, we’re not a Nothing, we are an Anything.  How high we learn to fly is how wide we spread our wings.

Hear me.  See me.  I am an Anything.

Your Anything,

Laura (Snamuh)

How to stop time

How to stop time

Dear Phoenix,

Negativity is a foul disease that infects the air of adventure.  The information wars between those who push and those who seek are louder now, and it seems fear has its fingers on the volume dial.  Though the heat from your flames are scorching me, for the first time I find I am able to channel the fire, and not hide from it.  How?

I have learned how to stop time.

Like shifting awareness to your peripheral vision when driving in a rain storm, Autism has taught me to use my heightened experience of the world as a way to develop a peripheral view of my interactions.

Acute spatial memory that allows me to revisit a place in my mind can also serve as a way to see an entire room from any corner without moving.  Vivid awareness of sound can help me blur mundane sounds into musical compositions.  Hyperfocus on detail can help me experience the glory of a waterfall down to the individual drop.

But what is most glorious is my inability to feel time.  I have no internal concept of the passage of time, which means I do not have to format my thinking to fit inside the neat little boxes humans build around them to feel accomplished.

When I am absorbed in my sensory world, I can stop time.  I feel no pressure from the outside world to return to structure.  In fact, I can be so still in my core that I am able to forget that all else exists beyond that suspended moment.

The world is not able to accept this from me.  Therapies and interventions for Autistic people are dripping with the the desire to reconstruct us so that we cage our sensory experience and replace it with rigour and obedience.  As if we are artificial intelligence gone rogue.

I too have read numerous books and studies on how to reduce my sensory experience so I can function more like my NT peers.  But that is wrong.

I was was wrong.

Why dim the light from your fire just so I can avoid being burned?  I can no longer be trapped with the flames.

I encourage others, go and sit in a public place where there are plenty of people walking by.  Half close your eyes for a moment and breathe in and out deeply for a minute.  While breathing, hear everything.  Open up your ears as if you are trying to hear the voices of people on the other side of a wall.  Let loud sounds and soft sounds be equal.  Break the words of others down into syllables creating a rhythm.

Now open your eyes.  Try and focus your visual priority into your peripheral vision.  As people pass by, do not interpret their intent.  Rather, see them as children sharing a bit of their love as they pass carefree to their next activity.

Once you feel totally open, find a pattern near you like the leaves on a tree or the tiles on a floor.  Zoom in on the pattern focusing on the individual components of the pattern.  When a person passes by or a sound occurs, visualize it as part of the pattern.  After a while, a bizarre but beautiful synchronicity will occur.

Somewhere in that exercise, time is released and its passing is no longer recognized.  I am able to stop time.  As I return to engaging with the world, I can see it’s beauty more vividly.  I can visualize my thoughts more clearly, and become more aware of the good in people.  Ego and pride melt away and fear becomes a dim flicker in the recess of my mind.

This is where resilience comes from.  It is not some sort of bravery.  It is merely the ability to absorb the collective energy that connects everything.  An ability derived from being open, being still, and being timeless.

Some people treat me like I do not matter, and this makes you burn, my dear Phoenix.  But it is the heat from the fire that makes the hot air balloon rise, stealing flight from the grips of gravity.  Let’s fly together Phoenix teaching the world how to stop time.  Only then will we humans truly understand how much we are capable of doing.

Love and infinity,

Laura (snamuh)

Note:

I have encountered so much disbelief and deliberate road blocking these past few weeks. Phoenix has even taken a few of my nights, not allowing me to sleep. So hear this, people who are blocking my students from inclusion, and people who trying to devalue my work:

YOUR FEAR WILL NOT STOP ME.

Teaching children with love and compassion is my life. I am not stopping, wavering, or changing my course. Am I scared? Absolutely. Phoenix is burning, but this time I’ve made Phoenix’s fire my fuel.

Pain is temporary. The impact of compassion is infinite.

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.

 

Anger, Truth, and Comfort

Anger, Truth, and Comfort

Dear Phoenix,

Sometimes I anger people, and even more so lately, but this does not bother me.  Anger is their poison, not mine.
 
I believe in the good of people, and that we get locked away inside ourselves because we want to be accepted more than we want to speak objective truths.  Since what is popular to believe changes, we must constantly redefine ourselves and somewhere along the way, we no longer know who we are.  So we get angry, or frustrated.  We act out, we judge.
All of us want to belong.  We want to be accepted, and not merely tolerated.  But somehow we think this can be achieved by dismissing our unpopular truths, and keeping quiet the child at our core.
Because I am Autistic, my view on this is dismissed as my lack of social understanding. But perhaps I have something valid to contribute.  I’m not asking for the world to change to fit me, nor should it.  Getting everything I want right now is shortsighted and restricts me from growing as a human.  I never want to be too comfortable.  When I am comfortable, I stop achieving.
So don’t give me everything I want. And please don’t give me what you think I need.  That is equally shortsighted. Instead, give me and other Autistic people these things:
Give me your patience – Patience, even in the smallest amounts goes a very long way.  Patience is an underdeveloped quality in many humans because it requires high levels of discomfort to grow.  For comfort seekers, this makes their job harder.  Autistic people have no choice but to develop patience.  Not only do we have to be patient with our minds and bodies as we stumble through making connections, but then we have to fight societies conclusions on Autism.  All of society, not just the NT world. Yes, even other Autistic people can create barriers for us especially when society creates Autism celebrities that fit only the stereotypes of acceptable autism.
I can play violin, and show clips of kids on every part of the spectrum doing the same, and still face a chorus of disbelief, and criticism.  Inevitably someone in the crowd will isolate me saying, “but you’re so high functioning.”  When facing this everyday, I have to be patient.  I have to breathe and remind myself that I am disturbing people’s comfort zones, and their first reaction will be to defend it.  But when they extend their patience to me, and amazing dialogue takes place. We both learn.
Give me your unguarded attention – When people come to Autism conferences, they typically have their own ideas about Autism that they are looking to validate.  Each person that attends my presentation enters the room with a sort of wall in front of their faces.  This is why eye contact is so difficult for me.  Why should I allow someone to see into me through my eyes, when they are doing everything in their power to mask their own eyes?  That is not my lack of social skills.  It is the avoidance of asymmetry, a necessary form of defence for me.
As I caress the room for their unguarded attention, and the walls begin to fall, we develop a new understanding of Autism.  Imagine how much more we could learn from one another if the guards were checked at the door.
Give me your hand – One of my favourite activities is signing books for people after they have heard me speak.  I love the feedback, and especially enjoy hearing how I opened their minds to think differently.  Helping my fellow humans grow is pure joy for me.  But when the crowds clear, and the convention hall is emptied, I walk alone.  It is a very rare occasion that I am invited to events or engagements not related to Autism advocacy.  But I do understand why.
Living in a compartmentalized society, I fit into a particular category of people.  I am sought after for information and support.  I am an Autism Advocate, a teacher, and a musician.  So people think of me only when these situations arise.  I have come to expect this on a certain level, and I am ok with it, especially since the friendships I do have are so rich.  I have awesome friends.
What does make me worry is that the community of support surrounding people with autism want for their kids that which they are unwilling to give other Autistic adults and professionals.
Trusting me as an Autistic teacher means you must also presume competence in me, and in doing so you must also trust and presume competence in your own child, now and into adulthood.  The true stinger in that statement is the phrase, “into adulthood.”  How many people truly believe that their Autistic child will be a successful adult?  By parents and professionals opening up their social circles to people with Autism, valuing them as people, it gets easier to see a successful future and to convince society to do the same.
I am not asking for people to pity me and therefore invite me.  There is plenty of pity to go around and I don’t want any of that.  In fact, I would rather anger people by trying to expand their universe than to be conditionally accepted by their temporary contentment.  It still doesn’t change the fact that I love people and truly believe they are good.  So I will continue on everyday do something that scares me a little.  Like most of the Autistic people I know, I don’t want to sacrifice achievement for comfort.  Perhaps others could do the same.
Until next time,
Laura (snamuh)

Autism Disclosure Does Not Make Me a Target

Dear Phoenix,

It is often that I hear from parents that they are afraid to disclose their child’s Autism because they make their child a target.  My first question is, why do people believe this?

First, let me say what usually remains unsaid, Autism is only invisible from a selective point of view.  When onlookers define the parameters of normalcy, they look for certain sets of acceptable patterns.  This is usually assessed within the first 5 minutes upon meeting someone.  If an Autistic individual, such as myself, doesn’t display any stereotypical Autistic behaviour in that first 5 minutes, the onlooker determines the individual is average neutrally speaking.  The point of this assessment is really just used by all people to check for threats, not necessarily for normalcy.  But as people develop a keener sense of socially acceptable behavior (sometime in the teen years) this survival technique becomes a way of forming social cliques.

Since most of our public day to day interactions are brief 5 minutes encounters, Autism in someone like me is invisible.  After the first 5 minutes, the onlooker retains their original impression and challenging it is now going to be difficult.  Enter strange behaviour.  A sudden noise that makes jump, a tangle of people walking in different directions that makes me shudder, or getting disoriented on an escalator.  These unusual reactions are noticeable by people around me as odd, and they start to wonder why.

Without answering why, people start to distance themselves from me.  They start to worry I will be “taken advantage of” by some nasty person. Their belief I am a target of cruel people, makes me concerned that I am.  And with that I become a target.  Autism was never even mentioned.  Since I have now become a target, others feel they must take on the burden of caring for me, like a very young child.  Afraid the friendship will be asymmetrical, they back away.

Let’s reframe this idea into something more common, being female.  We have built a society that states because I am female, I am a target of male aggression.  Therefore I am taught not to walk around alone, especially at night.  I am taught to wear clothing that is not revealing, to watch how much I sway my hips when walking, or even to be aware of my public food choices.  There is nothing more frustrating than wanting to eat a hot dog or a popsicle but feel obligated to chose something else because eating these foods is hypsersexualized by our society.  The difference here is that I cannot hide being female.

As we grow together as a society, we are changing the ways we see women.  The rape culture is being countered by a generation that says being female doesn’t make us a target, but rather teaching our children that women are responsible for male sexual aggression does.  I am one who firmly believes that my eating a popsicle is nothing more than eating a popsicle and any male who makes an issue of it should be called down by society as a whole.  I was not born female for your pleasure, but rather because of a genetic lottery.

Similarly, with disabilities we have developed a victim culture.  People with disabilities are seens as helpless, defenseless, and a target of abuse.  This mentality among our societies make it acceptable to believe that because a person is born with a disability they are automatically a target and that it is up to that person’s caregivers to protect them.  Again, just like with the rape culture, we excuse the aggressor and put the onus on the person with the disability – or their lifelong caregiver.

The solution by many has been to not disclose the disability in cases where disability can be obscured, such as with some areas of Autism.  But what about those who cannot hide their Autism?  What about those people whose disability is as obvious as gender or skin colour?  This system of protection becomes a way of catering to systemic bigotry.

Another big problem with this approach is that Autistic people are denied community and authentic human connection.  The truth is I love my Autistic friends, but l want and love my Neurotypical friends too.  When people make disability an acceptable reason for placing a target on our backs, we are often forced into disability only environments.  Disclosure becomes the secret code word to an elite group of outcasts, left to rely on one or two caregivers.  And once the caregivers can no longer help, we are left to the underfunded, underdeveloped public system.

Reframing my interactions with disclosure, I avoid all of the aforementioned issues.  I openly disclose that I have Autism, which means I cannot hide it.  As with being female, my openness invites a more positive energy of acceptance around me.  My friends learn in the beginning that I have Autism, and that there are struggles I continue to have because of it.  They learn they do not have to take care of me, but rather be the same support they would be to any of their other friends.  The exchange is mutual as my unique view of the world also enriches their lives.

Being openly Autistic makes less of a target than being covertly Autistic.

With the conversation open, and mutual, I have had an opportunity to build a community of loving people.  And should I have the now rare encounter with a dangerous individual, I have more than my caregiver to stand up for me.  I have an entire village to stand up with me.  As we begin to erase the archaic views that people with disabilities are helpless, we build a community of people keeping the one or two ill intended people away, not with their fists but with their presence.

When we hide our disability, we also send the message to the disabled person that they should be ashamed of their disability.  We deprive them of friendship and community.  We are telling them cover up, don’t eat hot dogs in public.

Being openly Autistic, as with being openly female, makes me a unique individual who is comfortable with my condition of birth.  It makes me a seeker, instead of a hider.  It makes me reach out instead of falling into deep depression, losing myself in isolation.  Being openly Autistic means I am free to be me, toe walking and all. And anyone who tries to hurt me will face 100 angry faces, some strangers and some friends, making sure it the aggressor knows it is not okay to make me into a target.

Until next time,

Laura (Snamuh)