Inside a Meltdown with Autism.

Inside a Meltdown with Autism.

I had a meltdown today.  This is what it is like for me.

We often put autism on parade through television and social media, as we portray the meltdown as uncontrollable violent outbursts that endanger everyone around them.  Meltdowns happen to just about every autistic person, and is the term used to describe any kind of system shutdown or emotional overflow that occur after over stimulation.  Each person with autism experiences their meltdowns in different ways.  As a child, I was much more prone to fits of crying or screaming, especially when I was frightened.  As an adult, I freeze and disconnect from the world.

As a public speaker, and one who is vocal about having autism, I am regularly put under the microscope.  More times than not, I am able to navigate my autism.  Focusing on my strengths, I come across to crowds as confident; but I am also scrutinized as not understanding the full spectrum of autism as I appear to them “high functioning.”  I have heard the words “but you are not autistic enough” or “your autism must be pretty mild” or “you must be higher functioning than my kid.”

I dislike the terms higher functioning and lower functioning because it pulls our focus from a competency model.  Just because a person with autism is non-speaking or has trouble controlling their movements, does not mean they are lower functioning.  In fact, many of my non-speaking students and friends are exceptionally bright people, who struggle to get their bodies to reflect their thoughts.  One of my non-speaking students compared herself to Stephen Hawking, bright on the inside, but frozen on the outside.

Throughout the varieties of autism spectrum disorder, most of us see our autism as much a part of us as our race or our gender, something that cannot be cured our removed otherwise it would change us too much at a fundamental level.  So, we focus on strengths, working each day to grow and influence our world.  When the meltdowns overcome us, we withdraw, self-heal, and start all over again.

This past Sunday, I had one such meltdown.  With so much change in my life, though all of it positive change, my world is unstable and difficult for me to navigate.  I am saying goodbye to friends, building a new business, taking on my 15 year old autistic sons’s challenges, and far away from people I care deeply about.  These are emotionally charged changes, which I do not handle as well as logical problems.  My emotional vibrations within, which I call the Phoenix, become so overwhelming they are consumed by their own fire.

Instead of retreating to my room, I decided to turn on my webcam, allowing you an inside look of what a meltdown is like for me.  Every autistic person experiences their meltdowns in their own way, much like people grieve in their own way.  My experience might not be the way for other autistic people, but by sharing I hope you are able to approach other autistic people with compassion, love, and a deeper understanding.

As always, be kind and love louder.

Boycotting Autism Speaks is not enough.

WPIniI am Laura Nadine, entrepreneur, single mother of two children, and I am autistic.  Autism has made it into the news quite a bit over the past decade, and most recently under the hashtag #BoycottAutismSpeaks.  Despite the seemingly sudden growth of Boycott Autism Speaks, this fight is not new.

Back in May of 2013, I composed a blog post entitled The Autism Industry and the Glare of the Blue Light, warning about the poor business practices of organizations like Autism Speaks, and the ever growing multimillion dollar autism industry allowing organizations to pocket over-inflated salaries by using scare tactics and propaganda.  But I thought I was alone in my stance, often ridiculed by parents of autistic children, and at times even told to keep my opinion of Autism Speaks to myself when speaking in public.

What led me to post against Autism Speaks?  It started in September of 2009, when Autism Speaks released their I Am Autism video, painting a picture of despair and suffering in the lives of autistic people. This video used the scare tactics common in the Autism Industry, and caused such a backlash that Autism Speaks eventually pulled the video. 

Following the video’s release, I spent time researching Autism Speaks and how they spent their money.  I spoke with local organizations to see from whom they received their funds, and what services they lacked due to poor funding.

Finally, by 2013, I decided to make my position official by writing about it on my blog.  This move cost me making 2013 my poorest year to date, and nearly forcing me to close down my business.

I looked to others in my local autism community  to speak up, But the conversation had grown silent.  People were afraid to speak against the autism industry.  They were afraid of losing what little funding they did receive.

You see, back in 2009 when Autism Speaks released their I Am Autism video, organizations comprised of Autistic individuals such as Autistic Self Advocacy Network (ASAN) were in their infancy.  Non-speaking people with autism were often kept in restrictive programs with little or no access to supports that presumed competence in the person with autism.  Instead, many members of the autistic world were kept silent, assumed incompetent, and often medicated to the point of lethargy.

But, because of organizations like ASAN, and the continually increasing network of autistic people, our voices are growing louder. Methods like RPM (rapid prompting method), a method that teaches non-speaking autistic people to communicate with a letter board, and increased access to assistive devices such as tablets and smartphones, previously excluded autistic people are now joining the movement.

What movement is that? Empowering people with autism.

Despite the growing movement, Boycotting Autism Speaks is simply not enough.  So what can you do?

In my article on the Autism Industry, I gave a few suggestions.  But it all essentially boils down to redirecting your funds to organizations that include autistic people in their decision making.  Organizations such as ASAN can always use funds to help improve the quality of lives of people with autism.  In my hometown of Atlanta, organizations such as Shenanigans, The Hirsch Academy, and Spectrum are hands on organizations that use their funds to develop strong, autistic voices.

But I want to see even more.

A few years ago I sought out a way to give to and recognize autistic people without the red tape often associated with government programs.  I outlined a way to give to autistic people directly, calling it the gift of the White Phoenix.

Shortly after, I created the White Phoenix Award, an award given to special needs students who have shown tremendous effort in school, but still could not get the high grades necessary to be recognized with academic awards.

Now, I want to grow this idea into the White Phoenix Initiative.

The White Phoenix Initiative is a call to action for colleges, universities, and community programs to sever their ties with the Autism Industry, and lean away from the cure model, embracing instead the achievement model.

Universities, such as Georgia Tech, CALTech, Yale, and the hundreds of other institutions of higher learning across the globe could unite with ASAN and autistic individuals to help make college more accessible.

Organizations such as the Bill and Melinda Gates Foundation, Google, Amazon, and Apple Computers could funnel donation dollars into college scholarship programs for people with disabilities who often cannot qualify for most existing merit based scholarships.

People with autism, and achievement model based organizations, united together under the symbol of the White Phoenix, could help Autistic people regulate organizations meant to help us.  Much like the USDA stamp on food, the White Phoenix could be used as a way to symbolize the trust of autistic people. An autistic seal of approval, if you will.

To help this grow, we have to unite the voices of autistic people with large scale organizations that have the finances to grow programs quickly, and the desire to see us succeed.

Therefore, I encourage any of the organizations I have so far mentioned, to contact me to organize a meeting to take place on google hangouts.  Our purpose would be to initiate the use of the White Phoenix stamp of approval to help people donate to trusted autistic organizations instead of Autism Speaks.

Like the Phoenix, we can rise from the ashes. Our united voices are white hot, and burning a lasting movement of change into the global consciousness.

So let’s rise, let’s unite.

The Developmental Corset of Therapy, and How to Break It

I recently read a wonderful post on BBC Ouch, by a guest blogger named Mark Neary.  In his blog, he wrote about how clinical jargon is used in his autistic son’s life, and how sometimes that jargon actually diminishes people’s perception of his son as a person.

I have encountered this same use of clinical jargon in the parents that I interact with as a public speaker on the topic of autism.  No longer exclusive to medical professionals and therapists, parents have adapted the use of more clinical jargon, but why?  Here are a few reasons I think may contribute to the widespread use of clinical terms to describe everything from finger tapping to immense talent in autistic people.

Categorization of the Unknown

Despite autistic people being noted for our need for routine, and logical compartmentalization, all human beings like to categorize.  Don’t think so?  Let’s take a visit by an insect as an example.  A bug, that we cannot identify, annoys a mixed group of people socializing by repeatedly flying into their faces.  At the height of their annoyance, someone swats it with a rolled magazine.  In a world where categorization doesn’t matter, this is where the story would end.  However, we all know that our next step would be to figure out what kind of bug it is.  Unless seated at the table with a biologist, each person would peer over the carcass of the dead bug, looking for familiar markings or body shape.  Some might even poke at it with a stick, in some bizarre effort to “get a better look.”  The conversation would end with some sort of conclusion about the bug, and at the very least, putting it in some familiar category such as bee, fly, or ant.  As you’re reading this, and especially if you are laughing now, then you can probably recall being at this table at some point in your history.

Parents are no different with their children.  Categorization begins at birth with the announcement of the child’s gender.  Based on this outcome, society then directs the parents in choosing a name, room color, clothing, and even toys society has deemed appropriate for the assigned gender.  As the child grows, other categories are used such as finicky, talkative, curious, etc.  Once school begins, categorization is placed in the forefront of all other aspects of the child, including the child’s preferences, and choices, especially those that lay outside of the “normal.”  Society shows parent’s that being categorized as gifted, or advanced are far more important than the child’s effort, as they award bumper stickers for Honor Roll students, but hand out tutoring and summer classes to children who fall outside the categories.  There is no school system wide reward for effort.

Add a disability to this whirlwind of categories, and parents begin to feel attacked.  Behavior modification techniques are put in place from sun up to sundown, personal choices of the child are all but ignored, and personality – the only real thing parents can connect to in their child – is stripped away one therapy at a time.

You think I have gone too far?  Then answer this; before I was diagnosed with autism, people referred to my ability to play violin as a talent, and even called me a “child prodigy.”  Since my diagnosis, my talent is now referred to as a “special interest.”  Why?

I am not at all against therapy, but a problem in the systems and approach by therapy is lacking a key element – the ability to separate personality from problematic, life inhibiting behaviors caused by autism.  The categorization of me into an autism model has provided more answers than problems, but when the diagnosis, and the following therapies, are not assigned limits of application, the diagnosis becomes a developmental corset.

The Blame Game that Follows the “E – Word”

When it was determined that autism was on the rise, society was not happy with simply stating “autism cases are on the rise.”  Instead, we had to resort to the E-word, Epidemic.  Much like the societal use of the words carnage, devastation, and horrific, when describing a negative event that falls short of that description (i.e. no death toll, just a lot of broken stuff, or Roseanne Barr cussing on Twitter) we have loosely misapplied the use of the word epidemic.

Up until the second half of the 20th Century, epidemic was only used to describe the spread of infectious diseases.  The semantic evolution of the word to include issues such as obesity and autism, only seem to be effective because of the sensational panic the use of the word attributes to the population.  Panic sells newspapers and prescription drugs, but it also demonizes everything that contacts the child, including the parents.  Adding epidemic to autism turns simple adjustments into drastic measures; it turns diet adjustments into chelation, therapy into neurological reprogramming, rightful emotional outbursts into aggressive threats that warrant restraint, delayed emotional processing into lack of empathy, and talents into special interests.

Where does this leave autistics?  Often times, it leaves us feeling broken and rejected.  Where does this leave parents?  It leaves parents feeling blamed for not doing enough, doing to much, or feeling like bad parents.  It leaves everyone seeing autism as a problem instead of a person.

It’s Nice to be Recognized

Recently, I had a meeting with three tremendously intelligent NT’s.  (I will not disclose the people or place, only because I do not have their permission to do so).  I had no idea why I was called into this meeting, despite their best efforts to explain it to me.  For so long, I have endured the back handed slaps of a society that could not understand me.  Following my diagnosis, the slaps became heavy handed pushing as I was expected to fix my “problems” and searing my accomplishments, sans college degree, with doubt.  How could I play the violin well and not be college educated or a savant?  Being a child prodigy, being a talented violinist who happens to have autism, knowing something deeply without learning just couldn’t be possible. But, this meeting was different.

As I sat across the table, I caught myself trying to explain myself.  I was guarded, and leery that I would never been seen as good enough.  As these three professionals patiently worked through a conversation with me, I realized I was being recognized and accepted.  What did it take?  What did these three do differently?  After all, they are immersed in the world of autism as researchers, and clinicians.

How is that possible?  Simple.  When they looked at me, they saw a human being, rather than a problem to be solved.  When they listened to me, they heard the words of an expert in living with autism, rather than a failure at living in society.  When they offered their hand shake, they offered their hand to a colleague, not to a child that should be led.  So, therefore, when they spoke, their words were filled with affirmation, and admiration.

Break Off the Corset

An autism diagnosis should lift us, not erase us.  Therapy should empower us, not limit our development.  The next time you meet someone with autism, be in awe of their immense ability to adapt.  Watch us.  Listen to us.  Recognize us.  Call us beautiful, talented, accomplished, intelligent.  See us not as an illegal immigrant, but a visiting Foreign Dignitary eager to make an alliance.  Love us.  And when you must, when we reach out for you, remember you are our seeing eye dog, not our trainer.

– LN