Coexisting with my neurological roommate, autism.
While traveling with friends this past week, I got to visit a lakeside park in Toronto. We walked down a gravel path and onto a small beach that was nestled into a sheer rock cliff. The clean, crisp strength of the rock gently draws the eyes around the cove, until they are lifted by the trees to the bristly skyline balanced on the edge of the horizon. Drawn by the sounds of the lake slapping the coastline, I stopped at the edge of a rock jetty, faced the wind, extended my arms, and opened my soul to its song.
The energy of the wind was excited and quick, like a herd of wild horses galloping atop the water. The lake’s surface was reaching up to tickle the wind in playful contrast to the deep, sombre lake bed that rested below. Though my feet felt as if they were slowly sinking into the rock, the crown of my head was lifted towards the sky by the dusty, warm colours of the sunset. It was a wonderful moment, not metered by the impending sunset, but by the rhythm of the shadows.
My autism is my strength, and a powerful piece in my life, that allows me to view the world as an acoustic tapestry. Yet, I cannot escape the fact that my autism is also a tiny rowboat, traveling the sea alone amidst a world of ocean liners and yachts. To overcome the elements and travel the waterways by rowing alone, is a way of life that requires tenacity and boundless energy. But when I tie up my little row boat in the harbour, most people would rather I go elsewhere. I would imagine this is the way the homeless must feel.
Only a handful of times in my life has anyone wanted to join me in my rowboat. At first, the boat feels crowded and heavy, but the warmth of company quickly overcomes the challenges. Over time I slowly let my guard down, and suddenly the tiny rowboat seems like ample space for others to join. Sometimes, they even help me row. Perhaps my connection of friendship is expressed in highly unusual ways, but it always feels as if the connection is deep, and understood. Riding in my rowboat quickly fills with laughter, intellectualism, and an ever deepening human connection. A simple beauty.
Inevitably, just before I completely let my guard down, others grow weary of my tiny rowboat. The reasons tend to vary, but usually follow conclusions built on a partial truth. The most frustrating part of coexisting with autism is the pure fact that inside does not always equal outside, intent does not always equal action. Fighting my body’s constant mistranslation of my mind is exhausting, and often means I have to explain my intent after fielding the emotional reaction of the other person. I am sure it is also exhausting for those who try to love me, as a friend or otherwise.
Very few understand that I am a vibrant individual who happens to coexist with autism.
Translating myself is the most difficult aspect of my autism, at least internally, but there is something that is worse; fighting other’s misinterpretations of me. Very few understand that I am a vibrant individual who happens to coexist with autism. Without the complication autism brings me, I am an extrovert, social being, who loves adventure and meeting new people. I am neurologically conjoined with autism, who is an introvert, introspective being, who prefers routine and observing people from a distance. Since autism is a neurological roommate, the battle between traits that are diametrically opposed to one another requires internal negotiations for peace on a daily basis. I cannot simply ignore what I do not like.
However, autism is not defined this way to the general public. People learn autism is a diagnosis, a disease, and a creature that somehow devours a personality. I am often greeted with expressions of shock and disbelief when others hear me state that I love people. If I have autism, must it mean I do not like people? Must it mean I prefer to be alone? No. It simply means I have trouble predicting human social behaviour and reacting to it in context, in a socially appropriate way.
Autism does not make me a static individual who remains defined by the rigid diagnostic criteria.
Even people I consider close to me, who are often on cue about my intentions and conclusions, can be dead wrong about me. One part of me that even my closest friends have difficulty comprehending is that I do break patterns – I do change. Autism does not make me a static individual who remains defined by the rigid diagnostic criteria.
I am forever conjoined with autism. The prospect of a cure, or any act that would permanently sever me from autism, means that a part of me dies. As with any conflict, internal or otherwise, euthanizing the opposition is not the answer. I wish to make peace with my autism so that I can benefit from the myriad of positive traits autism brings to my life. As my needs change, as my life evolves, my peace negotiations move to different areas. I believe that it also means I work to change my brain, much like Rudiger Gamm reallocated areas of his brain to do math.
To the outside observer, the most shocking thing I can do as a person with autism is change, and that should not be the case.
To the outside observer, the most shocking thing I can do as a person with autism is change, and that should not be the case. My personal evolution is exciting, and my conclusions can be fluid. Though I know the concise way of communicating this is often lost in translation, I can only be responsible to a point.
The rigidity of the observer often constricted by the diagnostic criteria is part of the issue, but more often it is the binary concept of normal and abnormal that gets in the way; If I am not autistic, I must be normal, or if I am not normal, I must be abnormal. As a society, we often fail to see the complex scale between normality and abnormality. This becomes most frustrating as my growth is masked by this conclusion. Small gains in my peace negotiations between autism and the person also known as me are misinterpreted, misunderstood, or remain completely unobserved since they are neither autistic nor typical. It is as if I am the modern day Chang and Eng.
The lack of this specific type of recognition is painful for me. This has nothing to do with seeking approval, nor is it set in my expectations of others. Recognition is part of the system built by society as being the marker for progress and success. But instead of recognition, my growth is often bookended by long periods of rowing alone.
So today, I am back to negotiating peace. My rowboat is filled only with the shadows of music, gently laid over my lap to keep me warm, as I continue searching for adventure. Next time you see a rickety little rowboat, seemingly out of place, docked in the quay, perhaps you will think of my story. Just remember, the strength of the rower is never reflected in the construction of the rowboat.
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.
How a road trip with a friend softened the emotional confusion of autism.
It is not often one gets to travel to a foreign country with a local guide. Locals can pull you away from the negative chaos of tourist traps and help set you in motion with the rhythm of the the local vibe. Energy assimilation is everything if you really want to experience something new. The people radiate energy they have carefully constructed over their time being a resident. The buildings reflect that energy, spreading that energy from building to building much like satellites beaming information signals that can be intercepted at anytime by our internal machines.
As someone who is autistic, I am particularly sensitive to this energy emitted by societies. Much of this is channeled through my Synesthesia like experience constructed of chords, melodies, and drum beats. Shadow songs, as I like to call them, are the fingerprints of the places I visit, connecting me in a deeper way, transcendent of the immediate bombardment of daily noise made by the human equivalent of chest beating through chatter, engines, and waste odour.
This is also an emotional whirlwind, something many people outside the autism experience fail to recognize. As I adjust to the world around me, I am tumbled through layers of emotions, costumed by physical reactions. I am not without emotion, but rather blanketed in it with so many layers that I find it difficult to unwrap. As I digest a new place, I must tolerate the ebb and flow of intense neurological misfires, much like walking through a crowded new space as someone repetitively flips the lights on and off.
This trip took my friend, let’s call him Billy Elliot, and I on an adventure as escorts for my daughter as she enters college in western Massachusetts. To round out the trip, we decided a side step to Boston was in order, followed by a short tour of Toronto, a city to which I am trying to move. The emotional response to leaving a first born child at college is interesting, and highly complex. Emotions oscillate from excitement to utter fear, through a type of parental pride, and into a strange sadness with a bittersweet coating.
Billy Elliot seemed to be intuitively right on cue, whose mere presence became an embracing comfort, wrapped over me like a warm, weighted blanket. Aside from his warmth, the local colour added moments of joy to the trip. While navigating the public transportation system of Boston, we met a pirate. Not a real pirate, per say, but a man who played a pirate at theme parks, and who was every bit living the role. Proud of his picaroon heritage, he sported shark tooth ear rings, tattoos, and the appropriate amount of facial hair. Should it have been socially acceptable, I believe he would have carried the role to include blackened teeth, but apparently his pirate’s life comes with a decent dental plan.
Searching for a way to keep my nervous system grounded while riding the public bus, I tapped into my supersonic hearing, honing onto the musings of the pirate, who now sat towards the back of the bus. Like a proud father of a famous sports player, he described in detail the many pictures of himself as a pirate on the job to the innocent Bostonians in seats surrounding him. Quite honestly, it was the perfect precursor to the afternoon which would end up including an invisible man, street dancers, and an Italian Restauranteur with rather defined opinions on credit card companies.
Throughout the day, all I could think about was wanting to be near the water. We crossed a nightmarish bridge that spanned the water a few times, but I knew I wanted to be closer. I turned to Billy Elliot and requested we dine on the water’s edge. Though we were able to find a sufficient dinner spot, it was only near the water, not on it. As we concluded eating dinner, I was pressed to the floor by a strange force, like being compressed by a large, heavy machine. Overwhelmed, and trying not to show it, I denied Billy Elliot’s offer to walk to the water edge, to which I am certain he was perplexed. As we awkwardly walked back to the train, my joints began to hurt, and eventually I was so overcome by confusion, I could not have directed myself back to the train on my own. I backed off several steps, following my daughter and Billy Elliot. Everything seemed so small, and I had no idea why.
It would take two days before the reason for the compression would reveal itself. Through a pleasant day at Niagara Falls, composing my new shadow song, and through the fun laughter of taking a road trip with a friend. Nightfall on the second night would be the night the emotional well would overflow. Struggling to understand my emotions surrounding my daughters new adventure, I snuck out of the bed (so as not to disturb anyone), knelt upon the bathroom floor, and cried.
Now in Toronto, I awoke to an intense need to walk. I showered, dressed, and grabbed my smartphone. Assisted by google maps I churned out vigorous steps, one after another, as I made my way to the grocery store. Each step sent a vibration through my body that began to heal me. By the return trip, I was walking with an air of confidence and peace I was desperately needing back in my life.
The people of Toronto are a stark contrast to the people of my hometown of Atlanta. I was pleasantly surprised by the openness and unassuming eye gaze. Random, soft greetings by others on their morning strolls, coupled with their unbounded desire to live among the people of their town, helped me to feel a sense of home. As I concluded my walk, groceries in hand, I stopped just outside the walk to the place where I was staying. I inhaled deeply and calmly realized, I am exactly where I should be at this exact moment in time.
The segway of energy flow from the morning to the early afternoon was slightly cumbersome. The city was bustling with visitors for the PanAmerican games, and the Toronto Blue Jays game. I enjoyed watching the people interact from the safe padding of the car, allowing me to view the city perhaps the way neurotypicals view it, without such an assault on the senses. Once we navigated through the city, we walked to the ferry port.
Standing at the ferry port to cross over to some islands on lake Ontario, I struggled to hold onto that peace. Fortunately Billy Elliot had invited his friend, let’s call him Glen Levitt, and his delightful puppy. The dog, though I am not typically a dog person, seemed to personify my own neurological battle to cope with the surroundings. At one point during the ferry crossings, I found myself knelt down again, but this time I was able to focus my response on comforting the dog. The dog and I provided support to one another, further enforcing the concept of therapy pets.
As the day came to an end, Billy Elliot, Glen Levitt, the puppy, and I stood lakeshore opposite of the city. Merely inches from the waters edge, I stood upon the “rock-stop” beneath the support leg of energy that burst from Toronto. The symphonic flow of light sparkled off of the energy waves, composing a piece of music so grand, yet modest in its upbringing. Random and beautiful, like a chorus of butterflies, yet powerful like water crashing at Niagara, Toronto snuggled deep into my chest, begging to be loved.
Billy Elliot, by this time was seeming more settled in. Though my presence may have caused a ripple in the flow of his daily life, it was feeling more accepted than before. Excited to show me the lovely parks of his hometown in the Toronto suburbs, my shadow songs began to play loudly. Grand willow trees, and the sight of children playing with their families,
made the stroll pleasant, ushering in a new brightened sense of contentment.
Saying goodbye was a tender moment. The tango with friends is always equal parts desire and adjustment, but by the last sunset, it felt as if the choreography was beginning to flow. When people chemistry is coupled with the holistic presence of a city like Toronto, you never want leave.
As for my daughter? We will forever hold the memories of this trip close, fondly looking back on it as the first day of our new life adventure, played out on a bigger stage.
It is considered polite to offer people a snack when they are a guest at your house. If they accept, you must also provide drinks and napkins, otherwise you will have to keep getting up to get them things.
I just finished reading a remarkable post by the author John Elder Robison, Early Intervention or Not. How Do We Decide? . I had an opportunity to perform at The International Meeting for Autism Research (IMFAR), the same conference Mr. Robison attended, and converse with a few professionals during the opening banquet.
His insightful post brought me back to an idea I had talked about on Facebook on March 28th when arguing why I do not call my services “therapy.” I mentioned the concept of the three R’s of special needs – Repair, Realign, Restructure.
Most parents want for their children to grow up to be healthy, educated, and independent members of society. When a parent is faced with a diagnosis such as autism, no matter what age, the news brings about fear and trepidation. This fear occurs mostly because the trajectory the parent had imagined for their child’s life is now viewed as uncertain. It is natural to fear the unknown.
Naturally, the parents look for resources on what to think, how to cope, and what do do next. As society focuses on the headlines generated from the autism industry, we begin to develop literature that presents success as only being possible after a host of interventions, and therapies – and the earlier the better. But as Mr. Robison pointed out, this barrage of constant services on autistic children may be masking talents. (Mr. Robison makes an exception for children with self-injurious behavior, which I think is important. I am not at all suggesting that children who injury themselves should be left to continue the behavior.)
Therapy, save private one-to-one therapy provided by a Psychologist or other qualified professional, is focused on what I call the three R’s of special education – Repair, Realign, Restructure. This is because therapy addresses autism, or other diagnosed disorder, as a whole as if the therapy were some kind of antibiotic. Rather, therapy should focus on specific complications that hinder that individuals ability to lead the life he or she so chooses to have.
In my own life, I have found my heightened sense of hearing an asset in my quest as a musician. This quality comes to me as part of the autism package, along with less desirable problems like sensitive vision and overstimulation problems. However, to pursue therapy for my entire sensory system would remove the hearing I rely on as a musician. Instead, I have focused on learning how to build an internal gate for my sensory system when I need to shut it down. How? By tapping into the other side of my sensory system oddities that come with the autism package – numbness.
Many autistics talk about going from overstimulation to numbness with their sensory system. Parents may recognize this when they observe their autistic child covering their ears at one moment, and then observe them “acting deaf” as they stare at a blaring loud television. I saw this problem as an internal resource. It occurred to me that if I have the ability to go numb, then there might be a way for me to decide when I will go numb. Using breathing techniques, sitting with my hands on my thighs, and then focusing my mind on the feeling of numbness, I am able to avoid a meltdown in a loud, crowded room. This may not work for every person with autism, as we are all individuals, but it worked for me.
The buffet of therapies available to the autism world are not useless, but perhaps they are misapplied. If the therapy is for autism as a whole, and focuses on repairing, realigning, and/or restructuring the person, then we are building a population of socially engineered people. If we use therapies available today to focus on issues of autism that hinder the individual from growing, then maybe we build a therapeutic atmosphere that allows the growth of a population of unique individuals who just happen to have autism.
Often I have been asked, by conference attendees who come to hear me speak, what I want out of life. People are curious if my future includes people, independence, and decadence, or a scary isolated existence. Not that there is anything wrong with living alone, but I do believe most people are shocked when I say “I prefer to live with someone.”
Money continues to be a large reason why I still am not where I want to be, only because we live in a society where access to money is necessary to live. I’ve tried not to dwell on that too much, and instead try to enjoy each dollar to its furthest reach. I don’t need millions, I just need enough. Still, I think there is no harm in dreaming. It helps us set goals, and is generated from that inner desire to see the word for all its good rather than the bad. As I have said before, dreaming is the conceptual art of the inner self.
Assuming money is no object, and my life work blossomed just as I had hoped, then what is the perfect life for me?
I love the ocean. I would want to be as close to the ocean as I could get, ideally in California, though any warm climate ocean town would be acceptable. The beach at my back door, or at least in walking distance so I could view the waves anytime I needed to be calm. My plot of land would be the smallest I could possibly have that would allow for my home to fit snugly. My home would be a Frank Lloyd Wright Usonian style home, possibly like the Jacob’s house or the Goetsch-Winckler Usonian house. It would have to have three bedrooms, even after my kids move on, because I would want my children to always have a room to stay in anytime they wish to come home. Being environmentally conscious, I would love to fit the home with solar panels, and use led lighting. The wonderful thing about FLW homes is all the natural light. My studio would be in home, where I could record, write, and create on my own.
I’d love to own a Jeep, though I’d love to convert it to a no emission vehicle. Hopefully, my home would be located in a place where bicycle, walking, or public transit would be sufficient. I would spend time in town people watching, meeting locals, and learning about the world in which we live. I would be the owner of an arts school that uses a teaching approach comprised of unconditional love, open to people of all learning types, and offered the most open scholarship program in the US, making sure that even the poorest of students can learn to play an instrument.
Given that my dream means that my financial needs are covered, I would donate most of my free time to helping public and private schools create disability friendly schools with integrated classrooms. I want the next generation to grow up believing they fit into this world just as much as anyone else.
My perfect life would also include a not-so-perfect someone to live and to share the beauty of life with. He wouldn’t need to share my interests or be anything like me, just simply be my counterpoint. You see, to me, love is not like harmony, but really is more like counterpoint. In music, a harmony supports the melody but is usually secondary to it. Counterpoint is when two equal melodies are played together to create a complex and intricate sound. They sound good together, oscillating between supporting the other melody and leading it. Sometimes the two melodies even argue, but they always resolve in the end. To me, counterpoint is love.
My perfect life has no specific goals or ambitions for my children. I would simply just support what ever goals and ambitions they have for themselves, even if I struggled to see it clearly. Just because we are forever tied together by DNA and by unconditional love, doesn’t mean I have any right or entitlement to insert myself into my children’s picture of their own future. I must be invited by my children, and continue to love them even if I am not invited.
Finally, my perfect life would leave behind a story that could inspire others, even if it is just one other. Pain sometimes needs to be shared, so others do not feel alone in theirs. Yet, beyond that we should freely give away parts of our triumph, not to our own detriment, but in healthy amounts so as to show others that it does in fact get better. If a spoonful of sugar helps the medicine go down, then be the spoonful of sugar.
There is not much more to a perfect life for me. Seeing new places in the world is always welcome, and I do hope to travel as a speaker to places outside my home country. It really is just that calm stability that comes with accomplishment that I seek.
Many of you know that I favor donating to small, local organizations that do hands on good with their funds. Though I do not have an exhaustive list of all the great organizations out there, I thought I would share a few of my personal favorites. These are organizations where I have met the owners and personally witnessed their generosity in action. They are in no particular order.
Shenanigans Improv Group – A group that uses improv to help children and teens with autism learn social skills. http://www.shenanigansimprov.com
Surfers Healing – A group that uses surfing to bring peace, happiness, and bonding to individuals with autism. http://www.surfershealing.org
SPECTRUM Autism Support Group – A great organization that connects people and resources, and provides wonderful support. http://www.atl-spectrum.com/donatetospectrum.html
Agnes Scott College – My college and an autism friendly college. You couldn’t ask for a better college experience. I would love to see someone set up a scholarship at this school for autistic students. http://www.agnesscott.edu
Marino Campus – The Dan Marino Foundation is working on an excellent project to help adults with disability receive a post-secondary education for work. http://marinocampus.org
One of my favorite ways to give is by giving grocery store gift cards to local families that are in need. It is a powerful gift. Families can use the card to purchase food they will actually enjoy eating and need. This frees up their usual grocery budget for buying gifts and allows them to have the freedom and pride of doing their own shopping. All the major grocery stores have these gift cards. My favorite is Publix: http://www.publix.com
Keep checking back. I will add a more as I learn about them.
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.
The Background, and My Own Struggle
I read an article in USA Today last May that touched me very deeply. AP Medical Writer Lindsey Tanner reported that 1 in 3 Autistic young adults “…have no paid job experience, college or technical school nearly seven years after high school graduation.”  I wish I could say I was shocked, but as a person with autism, I knew this statistic to be true, and was certainly echoed in my own life.
At 36 years of age, I have an education history that includes dropping out of high school as a Sophomore, and dropping out of college – twice. I am not skilled at anything domestic, which was pushed on young women in my region. I was also unable to obtain basic work skills often needed for wage work, or obtain the necessary social skills to “sell myself,” a skill that could make my small business much more profitable. On paper, I am unable to compete with my NT (neurotypical) peers, though I certainly have tried.
Off the paper trail, I am rather accomplished; I can play 7 instruments, 3 on a professional/competitive level, I have self-published two books doing everything from layout, to editing, to cover design. I have composed dozens of songs, listed a single on iTunes, performed on national television, spoken to thousands of people about autism, and taught hundreds of children to play the violin and viola. In my filmmaking endeavors, I have created numerous films, doing literally everything myself. And I am only talking about the last 2 years.
My yearly salary for 2013 – $10,000. Even in the years of a “good economy” I have never earned over $15,000 in one year. I do not have a savings, 401K, insurance, or an incorporated business that holds cash. My parents pay my mortgage, and I do not receive disability pay, as I live in that wedge between government definitions of abled and disabled. I am also a single mother, with my children residing with me full time.
There are so many non-profits out there raising money for autism, that I cannot begin to list them all. Many of these organizations have humble roots, beginning with a single family who wanted to do something good for autism. As these non-profits grew, they went from a family or mission like structure, where a few people take on multiple responsibilities, to a corporate structure with multiple layers of middle management, and a high paid CEO. They adapt the idea that in order to bring in money from high dollar individuals, they must have their own high paid CEO playing the “prestigious wealthy” guy.
All of this structure costs an organization money, scraping from the top as the funds pass down through the corporation, and leaving a fractional amount to the intended beneficiary – the person with autism.
Don’t agree? At the risk of ridicule, let’s consider this. An Autism non-profit collects money, often in the millions of dollars. They pay their own employees, who work to send the money to other foundations. Each one of those foundations have their own staff to pay, and overhead costs to cover. What is left is sent to pay for the services or research those foundations support. As the money is handed to hospitals, labs, or services for an autistic individuals, the remaining money pays the salaries of the people who provide those services.
Rarely, is money handed to an autistic individual to cover food, clothing, housing, a college education, or start a business. In fact, I do not personally know an autistic person who receives money from foundations for the things I have just listed. I am not referring to subsidized group housing or canned goods either. I am talking about housing and food that NT people would find for themselves.
Let me be more specific (and ultimately get myself in more trouble.) Autism Speaks reported earning $60 million from fundraising in 2011.  Researchers believe that the autism prevalence rates can be anywhere from 1 in 88, to 1 in 50. This means, at the least, there are 3.5 million people in the United States with autism. If I were to take the donations to Autism Speaks, and put it directly in the hands of every autistic person, every autistic person in America would be a millionaire. That is taking money from one single organization, raised in one single year, in a bad economic climate.
What about the good they do? What about a cure?
I am not going to stand on a precipice, and call out judgment. My goal here today is simply to point out that many, many, many people are making a very comfortable living off of autism, while most of the adults with autism live well below the poverty line.
People and families with autism are motivated on their own, to act in their own self-interest. Some seek a cure, some seek treatment, but many of us just need a good education, a supportive community, and an opportunity to work. Most of us are far more capable of being well paid, productive citizens, and a huge portion of us have incredible, native talents.
Yet many of us are paid low wages to file papers and clean floors. Most of us work unpaid for our expertise on autism when invited by these mega-million non-profits to speak, teach, or answer parents questions about autism, while the NT experts are paid hundreds to present research at these same events.
There is an imbalance here that must be addressed.
Many autism organizations make money off of a very specific set of limitations perceived in autistic people, many which are illusionary. We group traits into medically acceptable terms: milestones and talents into “special interests,” exceptional work ethic and job focus into “lack of interest in peers,” and the verbal communication we muster out as “inappropriate comments or monologuing.” How many of these mega-million non-profits for autism employee autistic individuals in salaried positions? How many mega-million non-profits for autism have an autistic CEO? To say that none of us are qualified to hold the position of CEO is a myth, just as it is a myth when people say there are no qualified women or people of color to be CEOs.
What Can I Do About It?
Simple. Here are a few ideas:
1) Give to small organizations in your local community that are doing hands on work for autism. Such organizations in my area are Shenanigans , Spectrum , and Georgia Autism Conferences  (who have been tremendously generous to me and are a huge part of my growth).
2) Get involved with organizations that are OPERATED by people with autism, or serve to empower independent lives in people with autism. Autism Self-Advocacy Network  is such a place, and even provides a list of projects that you can help.
3) Be patrons of businesses that have autistic employees. Being involved in local advocacy groups will often connect you with places that employee autistic people. Also, don’t be afraid to ask.
4) Help build Autistic owned businesses. I am autistic, and I own and operate my own business. However, my poor executive functioning and lack of business social skills make it difficult for me to do secretarial work, apply for grants, or network socially. Help people like me by funding projects, offering free or low-cost services to get us started, or offer grants to us to start on the right foot. Such donations will be far more rewarding and satisfying because you get to see your efforts grow first hand.
5) Develop full college scholarships for people with autism. Often times, we do not qualify for merit based scholarships, especially if we are coming from a school system that was unable to properly support us in grade school. A college education ensures that we will be working in an area where we excel. My only reason for dropping out of college is lack of funds. I am still being harassed by collection companies for my federal student loans which I cannot afford to repay, since I divorced and never finished my degree. I paid for all my college costs, I received no scholarships, and now my credit is ruined.
6) Parents, don’t hide your child’s autism under a bushel. Let it Shine! Believing in your autistic child and being proud of us, helps us build the necessary self-esteem to deal with the bullies of life. For me, saying to people, “my son is autistic” is just like saying he is a boy, or he has red hair. If you’re not embarrassed, the child grows stronger, and the world learns acceptance.
There are plenty more things you can do, you just have to look past the glare of the blue light to see those of us in the shadows. Get local, touch autism in person, and you will see an unparalleled beauty of gratitude.