"And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." Anais Nin
Although we are well into summer my morning glories decided they would bloom after all and so should I. I have been out of the closet about most of my life: Chicana Tejana proud of my Mexican American culture, queer loving not for gender but loving the Spirit people dare to show, letter writing sign holding, parade marching activist, progressive thinking outspoken community educator, and break the rules do what the art says "eccentric artist" but there is one area that I have not, my autism. So today after a long day of trying to explain myself once again to loved ones I decided it was time to be in full bloom and take the risk.
Surprisingly all the these layers of who I am are things that can be readily accepted by many but this one area, Autism/Aspergers seems to stump people. Invisible "disabilities" are like that, "you don't look like it", "you don't act like you have challenges". Yeah but I do. I have struggled my entire life and always will. I have made peace with that on most days but today was tough.
I move in many circles in my work and life and like a chameleon I am authentic but mutable. I am a keen observer and researcher and these are the tools of my survival. I have studied the humans and like an episode of Star Trek I have learned to "appear normal". I can "pass" and that is where it gets tough.
You see, I enjoy and even treasure my relationships but there is usually a place where the demand to be normal pushes me over the edge. And like the Chupacabra's prey I am left empty. It is then that I need to retreat, sequester myself, and renew my strength. My favorite place to heal is my studio where I transcend this time and space. And nourish myself with the creative process, using a language that speaks through me without borders or rules. Sometimes my hermit side is just a few hours other times it can take several days. I check out and go within and this is the part that most don't understand, its not a choice but a necessity.
Like other layers of who I am that present challenges in acceptance this too is mine. I live in a constant state of panic, real panic. Like when you have an accident or the feeling you get when you think someone breaks into your home. I have become accustomed to it finding ways to ease the stress roller coaster of my life choosing holistic ways of healing. I share this with you not to solicit your pity but to convey to you that different doesn't always look the same especially with a "spectrum disorder".
There are days when I get overwhelmed just by the thought of picking up the phone, stepping outside, or answering the door. I can speak before a crowd of 100 with no problem but some days in a room of just a few I am in a state of exaggerated panic. I often need to "prep" to be with others. Like Nancy Drew I craft questions to help me visually set the stage. "Who will be there?" "What time does it start and end?" "Whats the hierarchy if any?" "What does the place look like?" and "What is going to happen?" All the while trying not to appear controlling or be considered a diva bitch as some may consider me. (I don't blame them I haven't been open about what I need to do to survive.) What I am actually attempting to do is create a framework or picture to ease my uncontrollable anxiety about the event or situation no matter how small.
The funny thing about this "disorder" is that I am intelligent enough to know that it seems ridiculous to stress about going to a new grocery store or restaurant. Its the simple things in life that others do without a thought that slow me down and some days paralyze me. My mind says whats the big deal and my energy says beware.Over the years my intellect and Spirit know this battle well.
I think in pictures, say a word and I get a visual. Guess that's why my nearest and dearest are writers, spoken word artists, and others who love words. They use words like a paintbrush in my mind creating a language I can see and understand. My logical mind hears things literally and I often have to get past the picture in my mind, assess the situation, and then laugh a few seconds late at the joke. Or I have to ask for a more information when someone uses an unfamiliar colloquial phrase and recieve puzzled looks as if I were from another planet. After all when you say raining cats and dogs that's what I see.
Once I arrive and scan the environment and the people I can usually fit in and no one is the wiser. Its not about pretending its about surviving in an authentic way. I find that with the gift of this disorder I have also been given other gifts; of healing, epath skills, and seeing in ways other cannot. Perhaps this further enhances my survival skills.
Everything I say and how I say it has to be internally monitored before it leaves my lips because sometimes my inside thoughts fall out. Honesty is something very few can deal with and even then I am often not aware of my tone. I have unintentionally hurt friends and loved ones and then I have to clean up my mess and hope that they understand. It does not come from a place of malice but from the child like self actualized naivety that comes with this disorder. Most times its that very quality that tends to draw people to me like a moth to a flame.
So here is just a glimpse into my world and I didn't even begin to discuss all the sensory challenges life presents. I might have lost some friends today who don't understand my need to recharge and that my absence was nothing personal about them just my need to survive. As I look for the lesson in this I find that it is time to be in full bloom to share openly about all of who I am and be accepted and maybe a little understood or not.
Tlazocamati to a good friend and dear loved one who was consoling me as she has often. Her message rang true, don't worry about the masses you are loved for all of who you are by a few and they are true.
And even when those schooled in this disorder challenge me and say "You don't really have that do you? " I will remind them that "those who hear not the music, think the dancers mad".
So from now on I attempt to be all of me when I step into a room no matter the difficulty or good intentions and assumptions of others. Because today my Beloved reminded me of Shakespeare's words," to thine own self be true".
Asperger syndrome (pronounced /ˈæsˌpɜrgər ˌsɪndroʊm/; also called Asperger's syndrome, Asperger's disorder, Asperger's or AS) is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted, stereotyped patterns of behavior, interests and activities. AS is distinguished from the other ASDs in having no general delay in language or cognitive development. Although not mentioned in standard diagnostic criteria, motor clumsiness and atypical use of language are frequently reported
There is no single treatment for Asperger syndrome, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and clumsiness. Most individuals with AS can learn to cope with their differences, but may continue to need moral support and encouragement to maintain an independent life. Researchers and people with AS have advocated a shift in attitudes away from the notion that AS is a deviation from the norm that must be treated or cured, and towards the view that AS is a difference rather than a disability.
Thursday, August 14, 2008
Major changes in my life and I have been away from the computer but now I am more focused, I hope anyway. Today is my daughter's 29th birthday. I send this beautiful intelligent talented woman my prayers for peace and guidance in this next chapter of her life. Celebrate the woman you have become and are becoming. I admire the strength and courage you have to make your life all that you dream it can be.I love you very much my Sunshine.