This used to be a private note on my Facebook profile. But now I'm making it public so others can understand me better. Lately I've found myself feeling more closed off, even in my writing. I don't want that to happen, whether it's from growing up, social paranoia, or stress. So... here's me.
With my Asperger's, I have gifts. Quite a few, really... I can't often connect with people, but at least I can share my gifts. It's my job on this earth, you know?
Sometimes I get sad. I may never be able to truly understand other people... but I want to. I try my best. I hear it's a lovely thing, being able to look into someone's eyes and know what they're thinking, without blaring, nagging paranoia telling me that they hate me, or that they think I'm awkward, crazy, or overemotional. I find human eyes to be intriguing, but not so much when their gaze makes me feel vulnerable, as if my flaws are laid bare for all to see.
But then again, I wish that other people could see how I see, sometimes. I'm a very visual thinker, and my imagination likes to mingle with the real world: glowing streams of color here and there, angels in the clouds, and occasionally I grow my own set of wings on good days. I also like using my mind to organize things in physical space, whether or not I actually do so. Certain objects light up for me, and it's as if my brain automatically categorizes everything. It's so much fun, like a video game, to organize things.
There's also the upsides of my sensory sensitivities. I feel a sort of euphoria from everyday things, like a gentle breeze, certain types of music, fuzzy blankets, stretchy toys, the physics of water, etc...
The best parts of my world are peaceful, no fights over silly things, no lies or deception, and everyone is honest. When I finally have time to myself to unwind and set aside the burdens of adulthood, I can become myself as a child again, innocent and carefree. So yeah, I may never experience life like anyone else. But should I even want to? My life is pretty interesting as is, even without the comfort of deep connections with other people.
Is it just me, or does time fly a little faster than I would like it to?
Time, staaaahp!
For many of us, the pace of life can be overwhelming. For me, at the current time, it's utterly ridiculous. My most frequent wish is that it would slow down enough for me to breathe.
As an Aspie, I take in a lot of stimuli, so to keep up with a schedule that requires a lot of tasks in a short period of time wears me out easily. Especially with my major documentary project, I've been doing a lot of mentally-heavy creative decision making at least 8-12 hours a day under high pressure due to deadlines. Thank goodness I work independently, so I can push deadlines a bit farther if needed and not kill myself to satisfy any higher-ups.
Aspies often need more down-time than typical people, since the way we take in information can be exhausting. Me being an introvert only increases my need for alone time and recuperation. However, with the busy-ness of all my family members (and pretty much everyone I know), I'm often rushed along crazy route, and required to be fast and upbeat to survive...
I think my biggest problem is that I'm ambitious. There's soooo much I want to do, and there's no way to do it all at once, or even switch between them because I'm so bad at switching tasks. To give you an Idea—I have three YouTube channels, three blogs/websites, four Facebook pages, and I am an admin/launcher of an Aspie group on Facebook. My hobbies include writing: blogging, roleplays, novels; filmmaking: planning, directing, camera, video editing; singing, and artsy things.
I'm not listing these in order to brag—honestly I'm only moderately good at most of them—but it's just to give you an idea of why I get so stressed when I don't have enough time to do the things I really want to do. It's frustrating, because it makes it hard to have a balanced life. Without the support of my parents, I'd probably starve to death on the street because I was fixating on a new film or book I want to create rather than look for a job. Or obsessing over a project I never finished 6 years ago.
One of my most recent ambitions: to be a YouTube gamer/letsplayer. You know, those guys who record themselves playing video games and reacting ridiculously to things, while somehow getting tons of views (i.e. PewDiePie, Markilplier, etc.)? I want to do that, since I already yell and make funny noises and crack jokes when I'm playing games. Ironically, it takes charisma to be an entertaining letsplayer, and most aspies are kind of lacking in that area (including me when I'm tired)... but why the heck not? I might as well try it.
But, the only issue is that popular YouTubers are obligated to post weekly, or even daily, to keep an audience. That would be tough for me, and may just be another thing in my schedule to overwhelm me at some point. And that's what I'm afraid of. It's happened so many times before... I'll get excited over a new idea, like a new song to cover and post on YouTube, or a new blog post... and I'll either get halfway through it and stop, or I'll post things so rarely I may lose whatever small audience/subscribers I have.
I wish it was normal to do things at your own pace if you're a slow person, or easily overwhelmed. But in our lightning fast, instant microwaved caffeine to-go kind of world, good luck finding a pause button.
You know how some aspies (even grown adults!) get upset over seemingly minor things? There are real reasons behind it, and most of the time they aren't trying to be stubborn or rebellious. Sometimes it stems from a "lack of control," a mental block, intense anxiety, or physical symptoms like overstimulation. Whatever the case, don't chide them for it until you know why they're overreacting. And think before you utter phrases like "get over it" or that they're making a "big deal out of nothing"--in some cases, that's like scolding someone for screaming in pain after breaking their arm. I wrote this rant after getting upset over a situation that others might view as "minor."
"I'm such an Aspergerian idiot. All I do is stick to my stupid schedule. No one can ask me favors on the fly because all I do in response is explain why I can't... or to them, "make excuses." However, asking me favors, or even asking me to do the dishes "right this minute" kills me with anxiety during times like these. What's difficult to explain is just how stressful straying from my plan is, even if it's for something minor. Especially with my workload, I can't take any risks. My family has been complaining at me because I keep turning on the big chandelier light in the middle of the house, so they can't leave their doors open at night cuz the light will keep them awake. I use that light because it's indirect lighting that doesn't bother my eyes. And yet, there is a lamp in here. However... it's right in front of my face. And it's not in my schedule to move it behind me (and it's a standing lamp so it's a bit cumbersome), and the only way I'll do it is if I write it down. But I have too many tasks written down, and looking at my list will make me freak out. If I change my schedule at this point, let alone look at it, I'll crash and fall into depression for a day. I can't afford to do that because my work is important, and people are waiting on me to finish what I'm currently doing. Just the idea of taking the time to move that darn lamp makes me really anxious. So I just don't. I tell my family to just deal with the light--it's only on for an hour after they sleep, then I turn it off when I go to bed. I feel like an idiot though, because no one should accommodate to every little struggle I have. ...I'm getting upset just typing this, so I'mma stop." As a side note, I'm not saying that non-aspies should cater to an aspie's every sensitivity 100% of the time. Like most social relationships, compromise applies to an aspie's relationships as well. Aspies do need to try to adapt to the best of their abilities. Just be aware that you might have to accommodate more for an aspie as compared to the average person--i.e. refraining from blasting loud music, not pressuring them to join group activities, and being more direct in communication. Anywho, it's now past my bedtime and I haven't finished my work for the night. Please excuse me while I go freak out again...
April is Autism Awareness Month, and today (April 2nd) is Autism Awareness Day. But I would like to think of it asAutismAcceptanceMonth. Awareness alone isn't going to do much good for the autism community!
Share this photo if you support Autism Acceptance!
Don't get me wrong, I still think that awareness is important. If you are not familiar with autism, here is some information on it:
Autism Summary
"Autism is a complex neurobehavioral disorder that includes impairments in social interaction and developmental language and communication skills combined with rigid, repetitive behaviors. The disorder covers a large spectrum of symptoms, skills, and levels of impairment. It ranges in severity from a handicap that somewhat limits an otherwise normal life to a devastating disability that may require institutional care.
Children with autism have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves either with words or through gestures, facial expressions, and touch.
A child with autism who is very sensitive may be greatly troubled -- sometimes even pained -- by sounds, touches, smells, or sights that seem normal to others."
-WebMD
Now that you have awareness of autism, what will you do about it? Will you accept or reject it? What if you had a child born with autism?
It's up to you to decide your own view on it; I'm only here to share my own experience and findings. I should point out that as an extremely introspective autistic person who carefully researches and aims for objectivity, I know a good deal about this topic. All I ask is that you keep an open mind to the information, insight, and speculations I'm about to present to you.
You can't cure autism
Autism Speaks is hosting a worldwide event called Light It Up Blue, to "shed light" on autism.However, I will not be supporting this, because I do not support Autism Speaks (keep reading to find out why).
Certain organizations like Autism Speaks view autism as a disease that needs to be cured. They even state this on their website: "Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism." They do mention that they advocate for the needs of families and individuals affected by autism, but a mere 4% of their funds are for family services. Rather, the largest portion of their funding (44%) is for finding a cure through genetic research. For years (and to no avail), they have been searching for the genes associated with autism, so they can attempt to alter them in the future to induce "normal" brain development in those at risk. Many of my fellow aspies/auties would agree that an ethical problem, because genetic engineering can be more dangerous than helpful. I don't think it's wise to tamper with genes and DNA unless you're willing to risk destroying the organism you're trying to alter (in this case, a person!).
1. Salaries $18,484,028 2. Science Grants $15,790,797 3. Supplies and Equipment $3,332,651 4. Benefits $2,989,492 5. Professional Services $2,877,697 6. Advertising $2,212,520 7. Family Services $2,048,552 Source: Autism Parenting Magazine
Here's a great video from Amythest Schaber, an autistic self-advocate, as she discusses the issues regarding Autism Speaks.
Deanne Shoyer, mother of two boys on the spectrum, uses an excellent comparison in her article:
"If there was an organization called “Femininity Speaks”, led and staffed by men whose goal was to prevent, treat and cure femaleness, would you be comfortable with that?"
Autism is a brain type, NOT a disease.
From the perspective of the neurodiverse community, autism is a different type of brain development, not a disease.
Autism means your brain is wired differently, so it develops differently. You can't cure a brain type without eliminating it completely, which is essentially wiping autistic people off the face of the earth. Hypothetically, let's just say that a cure via genetic alteration is safe and effective. Would you choose to cure your unborn child to make them normal if the "autism gene" was found during prenatal screening? What if they could have been born with only a mild form of autism, and could have made crucial contributions to society like Bill Gates? Can you imagine the world without computers? The curist view of autism is similar to how society used to view homosexuality as a disease to be cured, and now it's accepted as a legitimate sexual orientation. It's also like trying to "cure" someone's personality just because it's different than yours. If you were an extrovert, would you try to rid the world of introverts? Just like an introvert may be perfectly content being introverted, many spectrumites don't want to change who they are.
Trying to make an autistic person normal is like trying to turn a middle-eastern person an Icelandic Eskimo. You can dress them up for the part and teach them how to act, but they'll always be inherently middle-eastern.
This Eskimo lady finds your efforts amusing.
I don't understand why society feels the need to force autistic people into a box of normality when some of their behaviors (like stimming) are necessary for them to feel comfortable. Stimming is not a harmful, and anything that can be viewed as a personality trait (i.e. being reserved, peculiar, picky, focused, etc.) should not be "cured." And things like not understanding sarcasm, hating small talk, not wanting to socialize much... these are considered personality traits in NT's! Even if what autistics do is a little weird, hey, that's their decision and freedom. It's their life, their choice, and if it doesn't hurt anyone, why change it? No one should have to change themselves just because others don't like it. Acting "normal" is a struggle for many people, especially those who are different, like autistics. I discuss this issue in my video on "normality."
Of course, there are some on the spectrum who exhibit harmful behaviors like aggression, self-injurious behaviors, etc. and I would certainly want to prevent those behaviors that are dangerous to the autistic person also/or people around them. But eradicating the autism won't solve anything--that's like saying murdering a depressed person is a solution to their depression. I would seek to understand what lies beneath destructive behaviors so I can try to address any underlying needs that may be causing it.
As for any harmless quirky behaviors like stimming, talking to oneself, obsessing over hobbies, etc. I don't see a need to shun them if they are helpful or expressive of the individual. The point is, attempting to cure this brain type for the sake of convenience is not as practical as treating the more unpleasant features of it.
Cure vs. Treatment
In the context of
this post, there is a difference between how I define “cure” and “treatment.”
To clarify, the cure
that I disagree with involves genetic tampering and/or aborting a child who may
have the “autism gene,” as Autism Speaks seems to support. I do, however,
support and encourage treatments for autism. While autism
is not a disease, many individuals on the spectrum still need/benefit from treatments
and therapies. Early intervention programs are crucial—especially for
lower-functioning individuals—to improve a child’s development. I also highly
recommend therapies according to the individual’s needs and preferences. For
instance, I know a handful of aspies who are provided with pet therapy, and I
can see how being around animals like horses and dogs helps them function better
by calming them. Other services that are crucial to autistic individuals as
they get older include social security benefits, job coaching, and transition
programs like S.A.I.L. (Students Attaining Independent Living). I am in college
now after being in the S.A.I.L. program for two years, and I doubt I’d have been
able to handle life as well as I do without the life skills I have learned from
it.
One major barrier from attaining services is the cost. Immense financial burdens are a common problem for families with autism, as these services can be expensive. There is definitely an issue with the government's financial priorities in many states and a severe lack of funding for programs and therapies. A family should not have to pay steep amounts (an average of $60,000 per year!) out of their own pocket. Non-profit autism organizations should always consider this crucial need in the community while sorting out their financial priorities. What do you think? Do we need to eliminate autism altogether, or place more emphasis on treatment? Leave a comment below with your thoughts on the issue.
It's a pain! Too many things going on at once overload my brain, so I prefer focusing on only one or two activities a day--such as playing a video game and doing ONE homework assignment. Not THREE homework assignments, TWO phone calls, TWENTY emails to check, TWELVE phone notifications, ONE meeting to attend, etc.... otherwise my brain explodes from thinking about all of them at the same time!
I am writing this because I'm currently overloaded. Usually when this happens, I get my brain to slow down by writing out my thoughts in list form. Here's an example, using what I'm dealing with right now: -> Asperger's Documentary DVD's (people asking for them left and right when I don't HAVE them yet) -> Need to make the DVD cover so I can order them -> Need to make the DVD itself so I can order them -> Need to make a few changes to the film so I can make the DVD -> Need to edit the film to make the extended version so I can make the DVD -> Alyssa Huber Films Website (need to get that launched so I can sell DVD's!) -> I've never made a website before -> I'm paying for monthly hosting already so I should get on it now! -> I can't get on it now because I have an exam and paper to write -> Busy in college -> Paper to write, exam to do-- -> People talking around me -> I can't shut out their voices! I can't think anymore!! (at least not enough to finish this list) ...I already feel better. But you get the idea; it's chaotic. The only reason why I was able to stay sane this weekend is because I had shut out everything else so I could focus on the premiere of my Asperger's documentary (Check out the trailer here). It's ironic, because I spent the entire weekend around people--premiere on Friday, awards on Saturday, and social event on Sunday--and yet I felt refreshed because I could let my brain focus ONLY on those events. The challenging factor about college is not so much the fact that I have to be around people a lot, but that I have far too many things to address at once. And no matter how minor they may seem, the quantity is what saps my energy at the end of the day.
In a fellow aspie writer's blog, "Aspects of Asperger's,"Capriwim's posts are very articulate and interesting, and he has a good following. Many may even question whether he's on the spectrum or not, since he has the capability to write so well. However, whileCapriwimis a talented writer, he doesn't make posts all the time. He explains that the culprit in his lack of regular posts is his everyday struggles with being on the autism spectrum; like his "difficulty multitasking when other things are going on, difficulty switching from one task to another, and difficulty getting organised." So why do many NT's—and even aspies themselves—question or deny an Asperger's diagnosis?
Why even?
Here are some common statements you might here from the doubters:
"Are you sure you have autism? You seem so normal!"
"You can't have autism. I know someone who has it, and they're nothing like you."
"How can you have autism if you have a good social life?"
"You don't LOOK like you have autism."
"Why do you have a job if people with autism can't work?"
It all boils down to two factors:
Everyone on the spectrum is different. Personality, symptoms, and level of functioning all vary. Quoting an expert on AS, "Once you've seen one aspie, you've seen one aspie."
A lot of us are really good actors. We can mask many of our symptoms, but it uses up a lot of energy—and once we're out of energy, the symptoms can resurface with a vengeance.
I am fortunate enough to have just the right blend of traits and symptoms to get by. On my best days, I have a willingness to learn, carefully-measured humor, political correctness, acceptance of anyone,and the ability to adapt to another person's style. For this reason, I can fit in among NT's as well as the neurodiverse community. I have also been told that I'm physically attractive and my presence is pleasant, which comes in handy for first impressions. ( So people won't know I'm crazy until they've joined the Alyssa fanclub. :P )
I also happen to be ambitious. I've survived school and college so far, discovered my dream of being a filmmaker, produced one full-length film and many short films, and I'm currently finishing up a documentary on Asperger's that has already accumulated a small audience.
You might be thinking: "Okay Alyssa, you've made it clear that you're pretty well-off. So what's your point?" My point is: this is the Alyssa that everyone else sees. Ambitious, pleasant, and cheerful.
What they don't see is my anxiety,depression, andexhaustion. They don't see my OCD tendencies, perfectionism, and mental blocks--
--nor my overstimulation when I'm out in public. They don't know the level of dread I experience at the thought of leaving my home to attend classes or run errands, wearing u.n.c.o.m.f.o.r.t.a.b.l.e clothing and/or interacting with people. They don't see me flapping my handsfrom nervousness or excitement when I'm alone in my room. They don't hear me repeating the same words or phrases over and over to get my brain back on track. They don't even see my happy aspie moments when I squeal and laugh freely, talk to myself or my fictional characters, and play with my favorite childhood toys. That's why there's a helpful new #HighFunctioningMeans hashtag on Twitter (as Capriwim mentions in his post), which is there to help others understand the complex nature of being a high-functioning individual on the spectrum.
Check out the Aspects of Asperger's blog post for more info and examples. If we continue to educate our friends, families, teachers, colleagues, employers, and everyone else about what it means to be on the autism spectrum, perhaps we'll all be able to forgive the aspies on those days when they just can't keep up the act anymore. Let them show their autism without fear of being judged.
My voiceis not in my words. It echoes around in my head, bouncing around, trying to find a way out. When I write, paint, draw, sing, and make film, bits of my voice leak out. And yet, I still feel like no one hears it. I shoutand scream inside my mind, wanting to tell someone everything that's trapped in there. But human language cannot capture it adequately.
Society's expectations are like barbed wire surrounding the utopia locked past the gates of normality. By the time I reach the gate, I've spent all my energy, my flesh torn by the wire's edges. To open the gate is another challenge; it's much too heavy for my weak muscles to handle. And yet, I have to push it open by myself... but I can't. So I shout through the gate, at the people on the other side. But they dare not open it, and they dare not cross to the other side.
The people in the utopia know what the other side holds: the mentallyill, the crazy, the criminal, suicidal, bipolar, autistic, deformed, traumatized, perverted, dementedones of their race. Home of the outcasts. My only company is the broken, when what I really want is to be close to people who have enough of their heart left to be kind when I need them. But in this world, wanting things is futile... you can't change who you are and what's happened to you.
Society knows of the other side, and yet there's much they don't know. They don't know that there is still love and happiness, even though it may appear as delusion and obsession. Each citizen of the other side is a real person, even if they are merely shattered fragments glued back together. That guy with multiple personalities might have more friends than you think--within himself. The druggie is going on all kinds of great vacations without leaving the spot he's sitting. The autist is having the time of his life color-coding all the marbles that the schizophrenic lost. The schizophrenic entertains the clinically depressed fellow by repeating the silly things voices tell him. All the NARCISSISTneeds to be happy is a mirror and his bipolar companion with delusions of grandeur.
These friends of mine hear my voice. If I'm condemned to stay outside the gate, at least I'll have company.
There's also the upsides of my sensory sensitivities. I feel a sort of euphoria from everyday things, like a gentle breeze, certain types of music, fuzzy blankets, stretchy toys, the physics of water, etc...
