What it is like to be Autistic and a Feminist.

I believe many people have an ill concept of bravery.  Being bold in the moment and then returning to mediocrity is something we have come to reward in society because it is easier to identify a single, anomalous moment than to pay attention long enough to truly see those who have exchanged moments of bravery for a lifetime of steadfast sublimity.

LauraN_gloweditIn the realm of autism awareness and acceptance, I see autistic individuals overlooked for achievement time and time again.  If I were to jump in front of a bullet meant for another, I would forever have hero marked upon my gravestone.  Though if I conduct myself through 100 years of life defying the stereotypes of autism, I will not be seen as brave or as a hero, but as an instigator, a know-it-all, and insensitive to autistic individuals who speak with assistive devices rather than with their mouths.

As a feminist with autism, this problem increases ten fold.  Ideas that are considered eye opening or ground breaking from the mouths of my male counterparts are valued without much scrutiny. While revolutionary ideas from female autistics are questioned endlessly, devalued, and disregarded as out of touch with reality.  I am seen not as intelligent, but as emotional to my detriment.  I have even been told I am less autistic because I am female, and therefore I do not truly understand what autistic men face in life.

When I proposed the idea nearly a decade ago that nonspeaking autistic individuals who were assigned very low IQs (due to their inability to participate in the testing) were in fact average to high IQ individuals trapped within their own body, I was dismissed.  I was told no empirical data existed to support my ideas, and not one effort was made to collaborate and explore the possibility that my idea was plausible.  No truly innovative idea has empirical data to support it at its inception.  This is understood, but I was not heard.

Every morning when I awake, I hear the noise of an unwelcoming world. In the air exists a strange cacophony of disdain fuelled by laws passed to limit me as a woman, and medications sold to limit me as an autistic.  I don’t want to contribute to a societal normality based on inequity and derisory hierarchy, where fear is the motivator, and love is distorted into a discipline stick.

We are all oceans of life, and fear is the cold that freezes us beneath a hard shell, suffocating the life within us.  Imagine the life that would rise out of us if we could only escape the cold of fear.

However I will not change nor will I compromise my extraordinary will to trail blaze.  I will continue to be brave only in my gratitude, whilst remaining steadfast in my work to bash down barriers.  I only hope that the next generation will get to live their lives on their own terms.  That the words “feminist” and “autistic” will be meet with applause, rather than with gasps of judgement, defeat and denial.

I am me.  I am autistic.  I am female.  I face a world every day where my ideas, my diagnosis, and my gender are more criminal than the acts of hatred that beat me down.  You can bruise me with your words, but I will be no less female, and no less autistic.  I will only be the one who continues standing up, again and agin, until I am no longer standing alone.

The Story of Socializing with Cooperative Hunters  -or-  I Swear This All Happened Before I Processed  “Hello.”

The Story of Socializing with Cooperative Hunters -or- I Swear This All Happened Before I Processed “Hello.”

(Another excerpt from 3 Pairs of Shoes, coming out in November of 2014.)

Lisa, my dad, and I went to the car rental place to fix a problem with the bill.  I’m not a fan of face-to-face interaction when problems need solved, because I tend to get frustrated trying to find the correct sounding words to keep the employee calm and still efficiently working to solve the problem.  Since it was just a bill correction, I had it in my mind that we would need 5 to 10 minutes to fix the bill, and that we needed it in writing.  As we arrived, I was uneasy, but focused.  After all, it was my fault the bill was messed up because I had failed to ask the right questions in the first place.  Today, I was set to ask these questions.

As we walked into the car rental office, Lisa and my dad went into stealth mode.  Slightly flummoxed by the change in their behavioral pattern, I approached the counter with my first sentence ready.  Through some sort of social people ESP, Lisa and Dad had an entire conversation of their own, and then took their positions.  Dad took a position behind me to my right.  Lisa approached the counter with me, to my left, but far enough away to seem uninvolved. I stood front and center. 

I don’t remember who verbally spoke first, but I remember thinking, “Let’s get this over with.  Fix the bill, get it in writing, leave.”  As I sorted through my mental filofax of vocabulary to find the most efficient way to ask for what I wanted, Lisa started to casually fidget with her paperwork while dawning a big, Hollywood smile.  Her fidgeting caught my attention because it wasn’t her normal fidgeting,  It was actually a calculated distraction for the worker behind the counter (which I figured out after the explosion of events that came next).

I squeezed a few words out, feeling small and out of place.  Out of nowhere, my dad starts in from the right, does some hand gesture dance, and asks the man, “Where did you go to college?”  Inside, I panic.  Wait, who said he went to college?  What if he didn’t go to college?  What the hell does that have to do with fix the bill, get it in writing, leave?

What the hell does that have to do with fix the bill, get it in writing, leave?

Before I was done panicking, the worker goes into his story, while my dad egged him on with more out of place questions.  I became so overwhelmed with thought and feeling, I stepped back from the counter.  My dad steps to the counter to lean on his right arm, but never fills my space.  As the conversation progressed, the second worker stops what he is doing to join in the conversation.  I kept waiting for these guys to start singing their Alma Maters and cheerleaders to come running in to band music.

Then, Lisa chimes in with a few questions of her own, and used acknowledging words like “oh yea?” and  “you’ve got that right.” and “you college boys!”  all while still wearing a smile.  At first, I thought these were just small talk words, but then I realized she acted as a component that set the conversational rhythm and mood.  Somehow, Lisa and my dad had come in like social cooperative hunters in order to bring the room under their control.  I was amazed.

…I was just standing there like an unplugged kitchen appliance.

Soon, the room was filled with conversation and I was just standing there like an unplugged kitchen appliance.  I started to worry that this quick office visit was going to turn into a dinner invitation at our condo, and yet another unrelated person my kids would grow to call Uncle because he was over at our house so much.  Now, my fear of this lasting more than 10 minutes was diminished by my fear that this could last a lifetime. 

Quickly I reorganized my brain and tried to refocus on the directive – get the bill fixed, get it in writing, leave – but I failed.  By this time, the conversation had turned into a morris code of syllables, accompanied by bursts of laughter, and the backbeat of Lisa’s calculated fidgeting, which by now incorporated her iPhone and probably a post to social media.  Everyone seemed happy with this arrangement, so I stepped back from the commotion, and became a spectator.  I tried to eek out some small talk, but all my words did was bring the conversation to a grinding halt, which then my dad brought back to life with talk about various US cities and some strange story about airports and door locks. 

A few mouse clicks later, we were leaving.  Everyone said their good-byes, and we headed out to our rental van.  In the brief walk from the door to the van, the silence gave me a moment to release my mind.  I sighed and then I turned to Lisa and said, “I don’t know what just happened in there, but we still didn’t get it in writing.”

Why are so many people with autism depressed?

Why are so many people with autism depressed?

It is certainly no secret that signs of depression are seen in many people with autism.  In fact, the Journal of Autism and Developmental Disorders ( Vol. 32, No. 4, August 2002) published an article showing that clinic-based studies suggest that depression is probably the most common psychiatric disorder seen in people with autism. [1]

As a person with autism, I have personally struggled with depression, as have many of my autistic friends.  So why is it that so many of us with autism struggle with depression?  Though I cannot give you a biomedical reason for this, I do have my theory.

To scratch the surface of this problem, we must first understand what depression really is.

Though many of us know a little from pop psychology magazines or exposure through the stories of others, as a culture we really know very little about depression.  Mitchell Moffit (@mitchellmoffit) and Gregory Brown (@whalewatchmeplz) at AsapSCIENCE have a great, short video that can help give you a better picture of The Science of Depression. [2]

(Watch the video here –> https://www.youtube.com/watch?v=GOK1tKFFIQI&list=UUC552Sd-3nyi_tk2BudLUzA)

It is obvious that there is a complicated undercurrent to the structure of depression.  Even though depression is caused by many factors outside our control, the video also said that the depression became visible in the person by their response to negative life events.  This is a delicate area I am entering, so I want to be clear that I am not saying depression is caused by people’s inability to handle negative life events.  Rather, I want to point out that it is possible that autistic people, in our struggle to interpret our emotions, may be less equipped to handle negative life events.

For example, the events leading up to my most depressed state were typical, negative life events experienced by many teenagers, not just autistic ones.  But my delayed development of emotional interpretation, inability to interpret body language, and social issues compounded each issue.  These experiences built up to a very large pile of negativity, making the sorting process a larger task than I was capable of performing.  Now layer on my genetic propensity for depression, lack of diagnosis, and lack of peer support, and you have a Gordian knot of negative neurosis.

Looking back, there is nothing I could have done differently because I was flying blind.  Not diagnosed with ASD until age 27, it was impossible for me to know where to start.  Yet, despite the fact I was undiagnosed, and not receiving any kind of therapy, I still managed to pull through my deep stage of depression.  Though I am never “cured” of depression, I have adapted strategies for managing my day to day life with overall feelings of joy (though I still have the occasional dumpy periods).

If you have heard me speak about autism, you know that I found my diagnosis to be a blessing; as if I was handed a tool box for solving the mysteries inside me.  You also may know that I credit much of my progress with autism to my time in therapy.  So the next question becomes, how did lack of a diagnosis help you recover from depression?

It didn’t.  Let me explain.

Therapy was a wonderful tool.  With each meeting, I was able to talk in my own way, and work through issues with my therapist as if she was a co-worker helping me on a project.  I was a huge part of my own recovery, and I really wanted to understand the interaction between my logic and my emotions.  I wanted to feel happy and I wanted to be strong with autism.  I was not looking for a cure.  This was helpful and would have been helpful at a younger age.  I am certain that therapy following a diagnosis at say age 15 could have really helped me to pull through my depression without the extensive inner damage that working it out on my own caused.  It could have also shortened the time I suffered with it,  and kept me from dropping out of school.  But the lack of a diagnosis meant I wasn’t in day to day autism related therapies like ABA, floortime, social skills therapies, or the like.

Part of the problem for autistic kids is the modern day autism machine.

Autistic kids today are put through a rigorous system of interventions.  Many kids from sun up to sun down are put on a very rigid schedule, being told what to do at every minute, being constantly corrected by either negative/positive reinforcement, or simply by having someone physically make them do the task.  They are forced to talk, forced on a variety of diets, molded, corrected, and pushed hard every day of the week, with no breaks.

Parents, only wanting what is best for their child, follow the advice of professionals in an attempt to give their child a “normal” life.  This is especially difficult for parents of children who have such problematic behaviors such as hitting their heads against walls because the parent just wants the child to stop hurting themselves. Professionals aim to cure autism, and then parents partake in the exhaustion of minute by minute therapy because they truly think it will help.  I don’t blame parents for wanting a happy child.

But who is doing the research to determine the long term effects of putting a kid in overly rigorous regimen of therapy?

No one.  We measure the apparent positive progress of therapy, but not the negative outcomes of completely reprogramming every impulse of a particular human being.

Imagine, being born into a world where every natural impulse you have, every thought that originates inside of you, is being met with anger, tears, opposition, correction, and redirection.  It is very frustrating, and leads us to the idea that who we are as people, is wrong.  Interventions begin to feel like punishments, and we are blinded by our own self-loathing.  Instead of helping us find happiness and develop independence, the therapies end up being the autism equivalent to reparative therapy used on homosexuality.

Yes.  That bad.

Let’s take a deep breath, and talk about happiness for a moment.

After all, we can’t truly understand depression in autism, and my assertion that too much therapy can push us into deep depressive states, if we don’t first understand what makes us happy.

Dr. Seligman, whom some call the Father of Positive Psychology, asserts that 60% of our happiness is genetics, but that the other 40% is in our approach to finding happiness.  He talks about three kinds of happiness, the pleasant life, the meaningful life, and the life of engagement. He breaks down the common practices of truly happy people to help us understand the components we might add to our lives in order to have happiness. [3]

Though I do not agree with Dr. Seligman on all of his points, he does make an excellent argument for the types of happiness, much like C.S.Lewis did with his argument for the 4 types of love.  However, what is even more poignant about Dr. Seligman’s speech is in revealing the shift in psychological medicine over the last 60 years.  He educates us about the Disease Model of psychology and how, despite many positive outcomes for this approach, this model brought about negative consequences.  Not only did the Disease model turn many therapists into Victimologists, it turned psychology from the research of normality, genius and high talent, and that in psychology’s rush to repair damage, interventions for making people happier were forgotten.

It never occurred to them to help make people happier.

The very structure of autism therapy today, in many cases, is based on the disease model.  We blame everything we see problematic in an autistic person on the autism itself, even when autism might not have anything to do with the issue at hand. Genius and high talents are widely ignored, and are often overlooked as “islands of genius” with no real world application, or seen merely as a “special interest” that gets in the way of healing.  Autism therapy then, by its very nature, overlooks the concept of making the autistic person happier.

If happiness is not part of the therapy model, then emphasis is constantly focused on correcting our weaknesses.  If autism, as a whole, is seen as a weakness, then it becomes impossible to separate the autistic person from the problematic aspects of autism.  Since therapy cannot cure autism as a whole without destroying the individuality of the autistic person, we then start to perceive ourselves as useless, broken, and worthless.

It is only a matter of time before this all becomes so heavy, that depression inevitably sets in.  Depression brings about more problematic behavior, and therapy often increases to correct even more problems.  This is probably why depressed people with autism start to resist therapy, and may even start to deny they have autism.

You weren’t in therapy for autism, so why did you get depressed?

Depressive states are not uncommon in people with autism because we work so hard to make sense of a world that seems unkind to differences.  When autistic people have added to them the constant burden of correction, and healing, these depressive states are magnified and deepened.  Since we are bitter and injured by over-corrective therapies, we start to resist interventions that could really help us with depression.  Our response to the autism machine painting autism with a broad, negative brush, is to view all of therapy as invasive, abusive, and painful.

Simply put, we start resisting the therapy we actually need, because we were overly corrected by therapy that was not helping us to seek happiness.

What can we do?

Let those of us with autism:

…enjoy our simple pleasures, even if you don’t understand them.

…lose track of time, and immerse ourselves in our own world.

…have regular days off from therapy.

…receive awards for progress, no matter how tiny of a step it was.

…have opportunities to talk in depth or totally immerse ourselves in subjects we enjoy.  If you can’t stand the topic, find us someone who does.

…exercise in our own way.  Not everything has to be structured.

…engage in our interests without parents trying to find the therapeutic value in it.  We want to have fun too.

Help those of us with autism by:

…helping us discover our purpose.

…teaching us to be optimistic.

…showing us how to be a good friend by example, not by forced interactions.  Socializing should be a family event, side by side, not a therapy.

…aid us in making or buying gifts for others so we can feel the enjoyment of giving to others.

…show us the benefit of resilience by showing us how you got past your weaknesses.

…being vulnerable and showing us you make mistakes too.

…surround us with happy people.

 

Therapy can be a wonderful tool, but it should never be used as a human jello mold.

 

 

 

 

 

 

 

 

 

 

Should I Delete This Blog?

Dear Readers,

I’ve been looking over my online content in an effort to clean up the website and streamline data.  As I was clearing out bulk, I found myself fixated on the question, “Does this matter?”  I wondered if my blog even offered anything that readers find helpful.

I am interested in your thoughts.  Please leave a comment and let me know what you like, what you don’t like, or if you even find any of this helpful.  I don’t want to be one of those people who spouts my opinion and simply uses the internet as a soapbox.  I fear becoming narcissistic.

So, the question remains, Should I delete this blog?

Struggling to Understand an Over-Politicized Nation

Struggling to Understand an Over-Politicized Nation

Image
My grandfather holding the flag at the very first Flag Day. An Italian immigrant, he loved being an American.

I do not usually talk about politics, but I find myself in a precarious position today. Many issues we face as humans have somehow become political, when they are ethical, personal, or simply in regard to human survival. I believe these issues are; the arts, the environment, education, and health. We as a society seem to have lost the ability to discuss these particular topics, without a party slogan, and without thinking that there are only two sides to every issue – Conservative or Liberal, Republican or Democrat. My feelings on human issues that have been politicized deepened today when an article dropped in my news box about the new open carry law in Georgia.  Though I am a pacifist, I have remained respectful that others do not see the world the same way I do, understanding that guns to some are essential to their way of life. I do not understand why the freedom to own was not enough and that we must have the freedom to be battle-ready at all times, in any place.  I feel this new law leaves the political arena, and imposes itself on the health and well-being of others (health being one of the issues I feel is a human issue).  My fear of co-existing in a state I have called home for 37 years has increased exponentially with this law, filling me with anxiety.  After a 10 year hiatus, I even experienced a night terror this week.

This feeling about the new gun law poked at my thoughts and feelings on the other issues that have been politicized.  Issues that have been tortured in the political arena, to the point that the issue itself is obscured by a party stance. It made me think about how politicization has perhaps suffocated the arts (especially in education), turned schools into testing labs, allowed us to blatantly pollute our world, and further restricted healthcare to poor Americans just to express ones opposition of the Affordable Healthcare Act. While many people are stepping onto the shores of anarchy, I ask: What is it you wish to accomplish? Are we really fighting to defend a way of life that allows all citizens to be created equal? Are we making history of which future generations will be proud?  Are we loving our neighbor?

It is in this moment that my autism stands like a stark, cold edifice in the center of my mind.  I get overrun with feelings that conflict with my logic – How is it I can love humanity so deeply while simultaneously being highly annoyed by people?  I cannot understand why society spends millions upon millions of dollars searching for a way to cure me, labeling me as lacking empathy, while they who cast this upon the ASD population are drowning in their own opposition to anything that does not benefit only them.  Is that not the very definition of apathy?

The world whispers to me in beautiful waves of sound.  The music of the human soul, and the music of the earth’s soul in harmonious counterpoint, express an amazing love for one another.  But people are growing increasingly deaf to this musical dance in exchange for the cacophony of human discord.  And to what end?  What we create here on earth we cannot take with us beyond the grave, so why only serve ourselves?  Besides, the only thing we can really do for ourselves is create memories of us in the minds of others.  We cannot control our death.  All else we do is for others – for humans, for animals, for trees, all life in and beyond our immediate scope – doing for them by way of generosity, love, and the types of innovation that leave a better world than was left by our ancestors. Perhaps I am being over analytical, and I do realize that my honesty here has made me a target for a lashing by those who oppose what I value.  I suppose I will have to just accept that.

I will keep my autism and carry it with me forever, as I would rather live this life misunderstood and tyrannized, than to waste my life pursuing an illusory need to be justified.  I will sing.  I will dance.  I will love others.  I just won’t be so quiet about it anymore.

Music Saved My Life

Music Saved My Life

I have had some time to look over what this group is doing for the arts. The Creative Coalition understands the value of the arts in society and in education.

Many of you know I had a private violin teacher whom I adored, but I was also trained in the public school orchestra program under a group of very talented and dedicated teachers.  Funding was always an issue.  It was the collective efforts of the teachers and the parents that brought in funds to allow us to delve into our art.  The Friends of the Orchestra, as it came to be called, brought in the funds to allow us to form chamber groups, bring in additional professionals, purchase new scores, and to have us professionally recorded.  We also got to travel, accepting an invitation to perform as the opening act for the televised Georgia Music Hall of Fame.

This was our group – a group of kids in grades 8th-12th.  With the exception of a lucky few, these students were taught to play in the middle and high school orchestra program.  We weren’t perfect, but we loved what we did.

Growing up with autism (but undiagnosed until age 27), school was a torture chamber I was forced to visit daily.  It was the orchestra that provided solace, direction, and kept me breathing on till the next sunrise.

Music, quite literally, saved my life.

A great tragedy today is that we see little value in the arts, especially when it comes to public education.  This group benefitted from a strong community, which overcame the shortcomings of the school system.  Will we ever see this again?

At least the people with The Creative Coalition  (http://thecreativecoalition.org) are trying, and you can too.  Don’t let the arts die in education.  Save the arts, and you just might save a life.

 

The White Phoenix of Autism Acceptance

The White Phoenix of Autism Acceptance

origamiPhoenix

Last May, following Autism Awareness month, I posted my feelings on the atrocities of the autism industry called The Autism Industry and the Glare of the Blue Light.  With that post, I wanted to inform all the wonderful people who have donated time and money to autism awareness of where their money may be going.  Perhaps viewed by many as simply a bitter post by an autistic person, the article seemed to get little attention.  It was never my intention to come across as bitter, but rather to help redirect the autism awareness attention from organizations pocketing profit on our disability, and to organizations making a difference but with too small a budget to advertise with the “big boys.”

This year, I have decided to start a new idea.  A new way of giving that is hands on, direct, and has the highest level of positive impact on the recipient.  The White Phoenix of Autism Acceptance.

 

Why a white Phoenix?

Those of you who have followed my story are aware of the significance of the Phoenix, the mythological bird, has to me.  For others, I believe the Phoenix is seen as a glorious bird that is consumed by it’s own flames, but rises again anew.  This fire versus rebirth and growth is a familiar theme to people with autism.  We understand the fire of autism when it restricts us from engaging in various areas of life, but we also understand the burn of desire, accomplishment, and growth.  To me, the Phoenix is a far better symbol of autism than the lonely puzzle piece.

The significance of the color white came from the thought that all new ideas begin with a blank sheet of paper, which is usually a white sheet.  Though white has many cultural meanings varying from innocence to death, the color white in this instance is meant to signify the beginning of something new.

 

So, what is the White Phoenix of Autism Acceptance?

The giver begins by deciding what kind of gift they wish to give and to whom they want to give the gift.  The giver can think of a gift of any scale, but it must be a gift the giver can give immediately, without delay or caveats.  Then, the giver selects a person or family with autism they wish to give the gift to.  This gift doesn’t go to an organization, but directly into the hands of the person or family with autism.

Next, the giver gets a square sheet of white paper, and then visits one of the online videos below (bottom of this post) to make their origami Phoenix.  When finished, the giver writes what the gift is on the tail of the White Phoenix.  The giver can photograph their Phoenix and post it on social media with the tag #WhitePhoenixAutism.

When the giver hands the origami White Phoenix to the recipient, the giver must be ready to fulfill the promise immediately.  The giver expects nothing in return, giving freely, and the giver must not give a promise of help sometime in the future.

Making the origami may be challenging, and it won’t look perfect.  However, partaking in the steps necessary to make the origami means you have thought about your gift.  Get creative!  Have the family over to help make it, or make it a school or office activity.  It is deeply satisfying when you finish.

 

What are the rules?  I just hand people stuff?

You are not just handing people stuff.  You, as the Giver, are in complete control of what you are giving and to whom you are giving the gift.  You decide the size, and with your up-close knowledge of the recipient, you can give them something they really need.  This type of giving is very social, very personal, and certainly doesn’t have the simplicity of donating a few dollars online, but there are already plenty of organizations out there that accept cash giving.

Want to try?  The rules are simple:

1) Giver must give what they write on the tail of the White Phoenix with no restrictions, caveats, rules, or expectations in return.

2) The gift MUST be deliverable immediately.  The Giver must not give an IOU or a promise of help in the future.  The Giver must not promise something they rely on others for unless they have already cleared it with the others to deliver the gift immediately.  So, no matter if you give a package of socks or offer to pay off the recipients mortgage, you must show up with the package of socks in hand, or the check to pay the mortgage in hand.  Don’t say “my company will pay off your house” and then find out after the fact the company won’t approve the gift.

3) The giver must put the White Phoenix directly in the hands of the autistic recipient.  This is person to person giving.  Do not give to an organization that promises to help, no matter how great you think they are.  Does this mean you have to visit the the person’s home or place of business?  No.  If you want anonymity, you can mail it, or have it delivered by a gift buddy (a person giving on your behalf).  Be creative, just remember the gift must be immediate.

4) You cannot make the autistic recipient retrieve the gift.  Do not send a White Phoenix with instructions to retrieve a gift.  Remember, it is immediate.  The only exceptions would be if you are sending a gift card, prepaid gift certificate, or other such gift that can only be consumed at the place where the gift is issued.  Just be prepared to offer transportation to autistic individuals who cannot drive.  Be nice.  Don’t give tickets to Disney World in Florida to an autistic individual in Kansas who cannot afford to travel to Florida.

5) The gift can be any size.  It can be money, an item, a vacation, a dinner, furniture, a house, a car, or even a day on the town.  It just must be real and something to improve the life of that individual.  Entertainment gifts are wonderful as many people on the autism spectrum are denied participation in fun events because funds are widely used for food, shelter, and health care.

6) The recipient must be an individual with autism or a family member of an autistic individual who is the primary caretaker of the autistic individual.  If you wish to give to a group, it must be a small organization that uses whatever you give immediately and applies ALL of your gift to the people with autism that organization helps.  So, for example, you know of an autistic group home and want to give there?  The gift you give must go directly yo the hands of the people with autism with ZERO percent used in administrative, overhead, or salary costs.  This is hand to hand giving, where 100% of your gift goes to an individual with autism.

 

What do you, Laura, hope to accomplish?

I hope to re-ignite people’s passion for giving and combine it with their passion for social engagement.  I hope to directly impact people with autism in a positive way without the hours of paperwork, and unrealistic expectations.  I hope to direct more dollars to improve the everyday life of people with autism and away from organizations that eat up the donations in large salaries and overhead.  I hope to see people with autism get gifts that allow them to not just live life, but enjoy life.

Are there tax breaks?  Probably not.  Is it time consuming?  It may be.  Will it change lives?  Definitely.

Give today, and if you please, post on social media with the tag #WhitePhoenixAutism.

 

 

Video on how to make origami Phoenix

 

 

 

 

 

Let’s Get Real

I need 17 minutes of your time to ask a very important question. Feel free to post comments. Be nice. Mean comments or blame shifting posts will not be approved.

Special thanks to my friends for their support, to Miss Representation for the courage and support system to talk openly about these issues, and to all my fans and supporters for your honesty.

 

 

Stones

Stones

IMG_1298When I speak in pubic about autism, the question that continuously comes up, in many different phrases is “does my child with autism love me?”  It’s a very difficult question for me to answer, because it saddens to me to think that parents feel unloved by their autistic children.  It saddens me more to think that a child must continuously prove their love to a parent through socially acceptable gestures, and that those gestures are confined to the few our society defines.

A hug, a kiss, a smile, a gentle touch, or the words “I love you,”  and perhaps to a few, non-verbal hints given with looks or presence.  Does love, or compassion, have to be delivered in a pre-defined box – I have a heart shaped box filled with candy, therefore I love you?  If I think of you, is that not enough?  What is enough?  What happens when love is shown in such new and unexpected ways?

Perhaps I am asking age old questions that persist even outside of the autism world.  These may be questions no one knows the answers to as they struggle to exchange recognition.  Yet, when put into the autism world, they are burdened with a new layer of strife between parent and child, adding the questions “Does my autistic child love me, or do others in my life just pretend to love me?”  Nothing can rattle a cage more than uncertainty.

I do not possess the wisdom to answer all these questions, but I can tell you a story.  A story of a piece of me so close to my heart, that I have never spoken of it.  Despite the intense vulnerability exposed by my revelation, I hope it gives all of you some solace and understanding.

 

Struggling with Love

As a young child I was clingy with some, yet avoided contact with others.  Contact from others was welcome on some days, and forbidden on different days.  As I got older, this attitude seemed to become more complicated, and I grew distant from those I had allowed contact with me in my past.  I understood hugging for comfort, but not for social expression, like when people hug to say hello or thank you.  I wanted to connect, but only on my terms.  I needed to understand why I was being touched and hold a reciprocal feeling.

As I grew older, I realized others wanted hugs too, but I couldn’t for the life of me read when.  One afternoon, while sitting with a friend who was recanting pain he was feeling with someone at school, I began to feel a vibration inside me.  I recognized he was in pain and needed comfort, but as his need grew, so did that vibration inside me.  By the time he was nearly to tears, I could no longer move.  No matter how much my understanding of his needs became clear, the vibration inside me would not let me comfort him with contact.  To this day, I do not think I have ever hugged him at a time of need.  I just stand there like a tree.

What was worse is my words get all jumbled up.  I struggle to find comfort words, so I spit out “I’m sorry” and then immediately go to work trying to dish out advice that could make his pain go away.  So why can I give words of advice and not words of comfort?  Easy, words of advice come from my highly accessible logical process, while emotional words come from my nearly inaccessible emotional process.

 

A Movie had the Answer

As time went on, and my friends had more problems they needed to unload, I became filled with these intense vibrations.  The vibrations even obstructed my own feelings to the point I had no idea what to do.  I would get sick to my stomach, giving me sensations much like ulcers.  No matter what I tried to do for my friends, I only dished out the advice.  Granted, the advice worked for most of them and they returned to get the advice, but it came at a price.  I became the friend they vented to but rarely the friend they invited to partake in activities that involved emotional exchanges – happy or sad.

Frustrated and wanting to show my emotion on the outside, I turned to my rock collection.  Yes, I said rock collection.  In the movie With Honors (a 1990’s movie with Joe Pesci and Brendan Fraser that I love), the character Simon Wilder collects stones as memories.  When he wanted to revisit the memory, he rubbed the stone to take himself back.  I was fascinated by this idea.

I pulled out my rock collection, and mentally labeled each one of them as a friend I was worried about.  When I was overwhelmed with this worry, I would pull out the stones and look at them, rub them, or hold them.  As my friends increased, and the number of their woes, I assigned little stones to the big people stones, and ended up with stone families.

My love for my friends and family didn’t come out the way people are accustomed to physically expressing their compassion, but I still cared.  Through my stones, I touched them with my thoughts, and cradled them in my hands.  For me, compassion is such a heavy emotion to bear, that I cannot move when directly facing it.  It was the stones that allowed me to be more for my friends, even if they never saw it.  I didn’t need credit, nor did I need my compassion witnessed by the recipient for approval.  I just needed a place to put it.

The picture above is of all my stones, hidden among the decor in my house.  As people pass out of my life, by death or just simply because life takes them another way, my worry subsides and they are transferred from the stone to my memory.  Their stone is passed on to another that enters my life.  In the special cases where the parting of a friend or family member leaves a hole inside me, I take their rock to a place I want to leave them, and I part with it forever.

Maybe stones are not hugs, or kisses, or facial expressions of sympathy, but they are symbols of my compassion.  Compassion that is deeply placed within me and far too delicate to expose.  Perhaps your autistic child, or friend, or relative, cannot show you compassion in the way you wish.  Though I ask you to believe me when I tell you that compassion is indeed there, waiting to be accepted no matter how it may be expressed.

The Mask People Call Friend

The Mask People Call Friend

Hands-of-FriendshipThe amount of hours I have spent in therapeutic settings learning the social skills, body language, and facial expressions of the neurotypical world has consumed enough hours that I should be an expert on the topic.  This non-verbal language system that our society boats as essential to living seems to rattle around in my head like BB’s – more powerful when in the BB gun of the social skills teacher than when in my tin can head that was used for target practice.  It’s not the concept of non-verbal language I cannot grasp.  It is the gross misuse of it by, well, everyone.

True, I struggle with intent, reading boredom in others – those “hints”people give instead of words that I should be pre-programmed to understand.  Though, I am not so dense that I cannot see truth, personality, and expression (or the lack thereof).  I do not miss meaning altogether.  I can read more than people realize, and I can hear the music they are made of.  I can hear people’s pain, and I understand why they want to wear the face of someone who is in control.  But I also see the variety of ways people express their friendship to me, versus how they treat their friends they see as normal, equal to them in social intelligence.  It’s not vicious, or intended to be mean.  It is simply the complexity of the mask people call “friend.”

The English word friend, much like the English word love, has a fantastic multi-color definition that is often diluted by people’s fear of being themselves.  Whether it is to defend the deep scars left by others, or simply to avoid the embarrassment of not matching the recipient’s perception of the friendship point for point, the friendship mask is used so often that the word friend comes to mean just about anyone to whom you have said more than just “hello.”

Perhaps I enjoy a world where definitions are more concrete, with obvious beginnings and ends, but I do not believe it drives my perception of everything.  However, must we accept a world where everything is grey area?  Where lines are blurred and decisions avoided so as to protect everyone’s feelings at the expense of our own individual fulfillment and happiness?  What use is a mask if it suffocates us?

This observation of masks came to me while observing people at a public autism event.  In the weeks before the event, I had been thrusted into a period of reflection when the 10th anniversary of my autism diagnosis, my 37th birthday, trickled by without any of the celebration, or goal achieving, I had envisioned for myself.  The intense feelings of loneliness that ensued intensified the music around me, forcing me to deal with the reality of neurotypicality.  The autism event, so perfectly timed, became the orchestra serving up a hallelujah.

As people approached their peers, they talked of interests – favorite songs, food they enjoy to eat, movies and books that impacted them, and if they were brave, political interests.  They talked, laughed, and in a relaxed form of vocal volley, they exchanged compliments they only partially believed.  As people turned to those with autism, the topic hardly ever left talking about autism.  I watched autistic adults fight stimming urges, use forced eye contact, and partake in calculated head nods while NT people told their views/stories/opinions/definitions of autism.  As NT’s slipped into their monologues, they excused and defended their quirks with misused clinical diagnoses, hoping to garner sympathy from the autistic listener, otherwise we be viewed as a hypocrites.  Not all people did this, but most did.

I then was hit with the realization that the social skills models taught to autistic’s in therapy had not allowed us to enjoy the human exchange of friendship.  Rather, it had relinquished all of our conversational control, and forced us to suffocate along with everyone else.  These weren’t social rules we were taught, it was social control.  It was adherence to a system that lacked definitions because it was built on the back of avoidance rather than connection.

I hear the pain of the human race in the shadow songs they cast.  It is so overwhelming that I rarely record the shadow songs of people.  The saddest part is not that people have experienced so much pain, but that they cling to it no matter how much of their inner beauty and happiness they tithe to the pain.  This inner battle of people I hear overwhelms me, thus making my avoidance of people shadow songs an expression of my empathy for them.  Sadly, it also ensures my loneliness will persist in areas of intimate human relationships.

Amidst this battle, and even through my moments of sadness, I still believe that the world is filled with beauty.  I refuse to wear the social mask, or give up my claim to meaningful conversation.  I address the world with clear definitions of colleague versus friendship versus lover.  Those I see as my friend cannot push me away, they must ask me to leave; and though I can hear the cry of the pain they insist on carrying, and in some cases throwing, I keep their song a secret.

We must remember that those of us with autism do not experience less of the world, we sense more of it.  We are juggling impulses, insights, and sensations to which the world at large is numb. If you have someone in your life with autism that you call friend, maybe, just this once, you could learn the social world from our view.  Trust us with your desires, your fears, your dreams, your vulnerability, even if that expression is without words.  And when we refuse to wear the mask to which you have grown accustomed, don’t assume we lack the empathy to hear your cry.  Hear the purity of our words, and respect the power in our hugs you call silence.  Maybe I can’t tell you what you want to hear, no more than the ocean can tell the sailor where to go, but we can still be there for you in depth, in journey, to the shores of your life’s ambitions.

If you call someone with autism your friend, reach out to them as a peer.  Then, be ready to enter into a new realm of social exchange, without a mask.  Your song is beautiful, let it sing for you.