Autism Acceptance Month (it's more than Awareness!)

April is Autism Awareness Month, and today (April 2nd) is Autism Awareness Day. But I would like to think of it as Autism Acceptance Month. 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!).

How Autism Speaks spent their money in 2012: click to view/download the official PDF

     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.

Switching Tasks

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.

#HighFunctioningMeans I'm Still Not Normal...

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, while Capriwim is 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:

1. 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."
2. 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, and exhaustion. 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 hands from 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.

From the Other Side: Can You Hear Me?

My voice is 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 shout and 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 mentally ill, the crazy, the criminal, suicidal, bipolar, autistic, deformed, traumatized, perverted, demented ones 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 NARCISSIST needs 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.

Let Me Fly

I'm like a bird in a cage. I want to fly and be free, but the barriers of society keep me locked in. I don't understand the other creatures in the cage. All I can think about is flying away.

I need to be alone, but there is no privacy in the cage. I have no choice but to mingle with the others, even though I don't want to. It's scary attempting to befriend them, because I cannot predict what they'll do or say, nor can I interpret all of their language. Sometimes they stop talking to me and I don't know why, even if we've been "friends" for a while. I don't know if it's appropriate to talk to them again if they aren't making an effort to talk to me.

It's exhausting just being around these other creatures, let alone try to connect with them. But I have no choice... this is the cage I have been placed in. This is the world I have to face. But it's not all bad. When I have a break from the mundane tasks the creatures assign to me, and when everyone else has gone to sleep, I find a comfortable corner where I can be myself. Though I can't fly, I can dream of flying.
I can dream of anything!

I hope that one day, I'll be set free from the cage. I hope that my wings are strong enough to carry me. I've done so much work in this world that they might be too weak. But no matter what happens,
I can keep dreaming until the end.

Creatures of the Earth, look at me and try to understand. I am different from you, but I am a living, breathing being like you.
Please let me dream. Please let me fly.

[Neurodiversity isn't a term well-known, but it applies to everyone. Everyone's brain is different, so not everyone fits into the cages society puts us in. People use labels like Asperger's Syndrome and Introversion (with these labels expressed in the analogy of my experience above) to help us better understand each other, but the minds under these labels shouldn't be viewed as a lesser brain type or a "disorder." Do not judge anyone's heart based on their behavior. Take the time to listen to them, in whatever way they communicate best. You may find that you have more in common than you think.]

My Adventurous Attention Span

Often when I interact with people, I detach from my surroundings, the conversation, and just about everything for a split second. It's like almost losing consciousness, or being stuck in a dreamlike state for a moment. It's really weird; in that split second, my brain seems to zoom waaay out, looking down at the universe and questioning the significance of the tiny speck of space I'm standing in, and the nature of language as I hear the other person talking to me, and I find myself observing the structure of the conversation more than the words or meaning. Sometimes it's so short that I can keep interacting as if nothing happened, but sometimes it's long enough that I missed something, and I'd have to ask the other person to repeat themselves.

Sometimes, this "brain retreat" is inward (makes sense since I'm an introvert), and I'd find it hard to focus on an interaction because I'm examining everything I do, trying to process a billion things, trying to search for socially appropriate responses in my brain's computer, all the while thinking about how utterly ill-equipped I am to be talking to that person. I'd also be putting myself down for letting myself get carried away by this process... and it doesn't help not knowing whether this brain overload is my fault or because of how my brain is wired. Or perhaps it's just my short attention span? I'm not sure if other aspies deal with this, or if it's just an Alyssa thing.

At the end of the day, my thought processes leave me exhausted. :/

Mechanical Metaphor

I'm surrounded by people I don't truly know, even if I "know" them. I want to connect, but I can't find people's brain-ports. I don't want to see their polite greeting program. I don't want their antivirus to block me. I want to know their system. I want to know what's in their documents and let them read mine, give them a taste of my music while I enjoy theirs, watch their videos and show them mine, and share files. 

If only our operating systems were compatible......