~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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16 May 2009

Stop Insisting I Don't Exist!


After reading "Assumptions, Assumptions" on the blog Normal is Overrated, it really got me thinking about people who repeatedly disregard the experiences of those who are either unique, different, or disabled. 

As mentioned in the blog post above, people tend to assume abilities based on appearances. Living with an onslaught of erroneous assumptions, when a person appears *normal* to others, can lead to great frustration. It's simply maddening to be accused of exaggerating or imagining nonexistent barriers, especially when you are dealing with something that is often invisible (like autism or deafness). 

Experiencing difficulty when it comes to attending to more than one thing at a time, such as having a conversation in a busy area with varied visual distractions, or making change at the store under stressful circumstances, or trying to speak effectively after reaching certain limits are all very real issues common to autistics. 

People who may view an autistic person as *normal*, or who are unaware of the autistic person's autism, may be quite confused to suddenly see flapping hands, staring off into space, stuttering, or rocking in someone previously assumed to function in a specific manner. Stress, chaos, unpredictable environments, and even co-morbid conditions often leech the functionality, if you will, of autistic people. There is nothing new about this fact. What is often at the very core of autism is what is most often misunderstood.

There seems to be a significant struggle to understand how what seems so normal, comfortable, and habitual for the autistic person in one situation can become so foreign, anxiety-producing, and even detrimental in another situation. Again, stressing the reality of uneven skills in autistic people is of magnificent importance. Acceptance and understanding of this concept will hopefully lead to widespread inclusion, respect, and support of autistics. 

In essence, because I present 'normally' in a typical scenario, people make the mistaken assumption that I am neurotypical, and are quite surprised when the autistic quirks start coming out of the woodwork, when they find I can't drive a car even after years of practice, or when they try holding a phone conversation with me and it ends up being made of Epic Failure To Communicate.

The above sentence from "Assumptions, Assumptions" is succinct, valuable, and dripping with daily life struggles pertaining to the prevailing misunderstandings of autistics, especially Asperger's or highly self-determined autistics. Family, friends, professionals, and even society who insist on repeatedly--and incorrectly--pointing out that personal perceived difficulties are imagined are doing little to encourage, corroborate, and empower autistic people. 

Even Hans Asperger was able to pick up on the effects of stress and uneven skills by pointing out that autistic performance is often best under low-stress or spontaneous circumstances in comparison to performance under stress or new situations. Asperger labeled this phenomena as a peculiar sign of 'autistic intelligence.'

On the other hand, Rosalind Oppenheim, former Executive Director of the Rimland School for Autistic Children (now Rimland Services NFP), and the mother of an autistic son, was noted to have said that people who look incompetent, or who are nonverbal, may obviously be highly capable individuals. She further explained that such individuals deserve specific personal attention and insight in order to avoid assumptions based on appearance. 

I'm tired of being told that my struggles are the same struggles everyone deals with. Yes, to an extent, this is very very true. The magnitude of my struggles, however, cannot be easily compared to the average person. Downplaying or making me think my struggles are all in my head, or that they are misconstrued is offensive and infuriating. Unjustly assuming things about autistics can directly lead autistic people toward low self-esteem, depression, compulsiveness, mistrust, lack of concern, and even worse, suicidal thoughts and tendencies. 

Autism, and the traits that belong to it, are very real--whether or not it can be seen--so stop insisting that we don't exist!

04 May 2009

Adversity


My BADD post didn't go over so well with Foresam, author of the blog site Hating Autism.

Take a look at Foresam's response to my BADD post:

Ari Ne'eman is not autistic. He has Asperger's. You have no clue what low functioning autism is all about. Ne'eman is intentionally confusing the issue, as are you.

Well, at least Foresam was direct and to the point. On the other hand, I thought my post was strong enough to at least influence a few opposers or to at least incite positive change. 

Alright Foresam, I've been tossing around your commentary and here's my response:

Yes, you are right, Ari Ne'eman is Asperger's autistic. And, as you know, Asperger's is a form of autism belonging to the Autism Spectrum Disorder family within the Diagnostic and Statistical Manual of Mental Disorders.

Several Autistic community members refuse to distinguish themselves by type of autism, as it may lead to classism both inside and outside of the community. Please note that the Autistic community is working to secure improvement of life for all autistic people. Categorizing autistic people hurts the community. It is also subjective, as autistic people often have uneven skills. For example, an autistic person may be a whiz at computers, or at solving advanced math calculations, yet be completely unable to attend to self-care needs. Also important is that many people on the spectrum--despite the label they may have been given--require services and support in order to reach goals and to level the playing field.

It is untrue to assume that the Autistic community includes only those who fall under the label of Asperger's or "High-Functioning Autism." There is a great number of autistics who face extreme challenges, and who deal with co-morbid conditions, who are just as much a part of the Autistic community as any other autistic person. The Autistic community is kept alive by members from all walks of life, including those who live in group homes or other similar environments.

Perhaps it would be of interest to you to learn that ASAN is most definitely not run solely by those who are Asperger's autistic.  ASAN receives invaluable service, commitment, work, input, and collaboration from members who represent several facets of the autism spectrum.

On the contrary, I am well aware of what you assume I "have no clue" about. Let us momentarily move to my experience working as a Speech Language Pathology Assistant within a Self-Contained Classroom for high-school students on the autistic spectrum. 

One of my favorite students was a female who was nonverbal except for a few select vocalizations. She struggled to read early elementary sentences and books and also struggled with learning how to write and type. She lacked self-care skills, engaged in frequent flapping and rocking, screamed out often, hit herself, and had a lot of rigid rituals she needed to maintain.

At first, I did not know how to relate to this student. Matter of fact, she frightened me, especially when she screamed and commenced to biting herself. That noted, I never once saw her as a monster, or viewed her as someone who should be despised, hated, discarded, and left to dwell on the fringes of society. My instincts drove me to find out how to best speak *her* language. Within two weeks, we grew to understand each other and shared times that could rival the most beautiful sunsets on earth.

I am telling this to you because I often wonder what is so hard about accepting people who are different. Seeing as to how there is no cure for autism, should the girl I spoke of above, and others like her, have to live in shame for who they are? Why do we wish to stamp out and obliterate people we fear? Do they not deserve the same respect, rights, and understanding as any other human being? The girl above did not need to be a typical person to bring love and magnificence into my life and into the lives of others. 

Is it not my responsibility, as a fellow human being, to help those I can in the ways I know best? The Autistic community pushes only for what has been proven to help autistic people most.

I happened to notice that you are a Louis Armstrong fan. I love that song "What a Wonderful World." Are disabled people not also a part of this world? After all, we're all here for some reason or another. 

To accept or not to accept, that is the question.

-Elesia

01 May 2009

Blogging Against Disablism Day 2009



So it's May 1st of 2009, Blogging Against Disablism Day (BADD). Let's get this show on the road!

My topic stems from an article I read on Salon.com titled "I am not a puzzle, I am a person," by Elizabeth Svoboda.

The article begins with the story of Dana Commandatore learning that her son, Michelangelo, is autistic. Afterward, she begins searching the Internet, where she discovers the Autistic Self Avocacy Network (ASAN). Forging an immediate bond and understanding with its empowering message of autistic advocacy, Commandatore even goes to see ASAN's president, Ari Ne'eman, speak.

Svoboda moves the article along by comparing the Autistic Rights Movement to the Deaf culture movement, both of which are rich with empowerment and advocacy. Being valued as individuals resonates within the core of these movements, which have been greatly successful in forging strong communal bonds, conquering myths, and lobbying for much needed laws and social changes.

Ari Ne'eman (mentioned above) states:

The real ends for autistic people should be quality of life, full access into society, the kinds of things we support and are working for. Parents have been told that the way to approach these things is to support research for a cure, but our belief is that that's not the most effective paradigm...the cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are. 

Svoboda's article then turns toward exploring the cure-focused paradigm. We learn of Michelle Dawson, who purportedly convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for Applied Behavior Analysis therapy, which is a popular form of behavioral therapy for autistic children. Michelle Dawson's direct commentary regarding the Canadian ABA case may be accessed by clicking here.

ABA is experimentally derived (though some categorize it as a scientific sub-discipline, in addition to being a body of research). It focuses on developing *typical* peer social skills in autistic children, the point of which is to improve socially significant behavior. 

Though there are plenty of families who say they use a loving ABA approach, it worries me that there is documented and reported use of punishments and restraints related to the ABA methodology. Also, ABA seems to lack an official governing body and a clear cut outline of practice. One of ABA's oft-touted principles is that it is a form of autism recovery--which has yet to be scientifically proven. 

There is a magnificent difference between offering a barrage of reminders to an autistic child so that he or she eventually *learns* to behave typically verses using an autistic child's strengths and interests to facilitate the acquisition and adoption of meaningful skills. Furthermore, there is a fine line between teaching and inhibiting, encouraging and forcing, understanding and ignorance, and acceptance and denial. 

All in all, when it comes to ABA and other teaching methods, it is extremely important for parents to choose teachers based on their ability to see a whole child rather than some disease that needs to be corrected. The effort and attitude of the teaching staff is monumental, and unfortunately, ABA programs may vary greatly. Intervention, teaching, and care of autistic children must always be done with respect.

By and large, some of the main goals the Autistic community is lobbying to secure are:

  • Appropriate education inclusive of post-secondary plus vocational instruction and training
  • Integration, acceptance, and understanding 
  • Opportunity and legal protection
  • Functional housing and quality health care
This list covers modern human rights and necessities. This is what all people, disabled or not, require in order to have a fighting chance at building and creating fulfilling lives.

As a parent of an autistic child, I do all that I can to ensure that my son will be able to enjoy the above mentioned securities. Teaching and preaching "normalcy" is not a priority. Sure, my kid does need to be taught to sit down at a restaurant, not to scream in public, to wear clothes outdoors, and to have basic consideration for his fellow human beings. That is, however, completely different from spending most of my time with my son enforcing eye-contact, pushing him to be social, coaching him to behave like typical kids, in addition to squelching his desires to flap or rock, etcetera.

Education comes in many forms, and what is right for one, may not be so for another. That noted, the Autistic community is looking to empower autistics, not change them. There is plenty of room for individual expression within the community.

Cure-focused organizations and groups may counter that the Autistic community wishes to obliterate much needed government funding for individuals on the autism spectrum. Yet, in reality, the Autistic community is heavily involved with lobbying for government funding and support, in addition to lobbying for the passing of political bills that are helpful to the Autistic community as a whole--children too.

Does the Autistic community fall into Svoboda's label of the "something-wrong-with-society" camp? You bet! And generally speaking, there is something wrong with society. Matter of fact, we still live in a world where people judge others by skin color, social status, appearance, financial standing, religious beliefs, disability, sexual orientation, and what have you. There most certainly is something wrong with society when the needs of the underdog are repeatedly swept beneath the carpet, only to be momentarily peeped at once in a blue moon.

No matter what side of fence one falls on in the world of autism, it is important to remember that no community is immune to the human condition. There are nice people and mean people, helpful people and deviant people--no matter what rock you look under. 

Speaking of devious folk, check out this blog titled Hating Autism, which labels Ari Ne'eman as a psychopathic leader who is nothing but a "lying, depraved, evil monster." 

My inner instincts tell me to steer clear of crowds in support of hating autism. What business do I have aligning with such dark and negative counter-culture? Any organization or blog spreading the discordant ignorant message of hate is, in and of itself, programmed for nothing but eventual self-destruction (and from within!).

If we refuse the Autistic community, or look to stamp it out, we silence an important part of history that has every right to exist here on this earth. What link to sanity does ignoring what is rich with culture, insight, ideas, change, and understanding hold? How is it that some would gladly eliminate the powerful poignant voices of autistics, which have yet to teach us so much more about the reality and truth of autism?

I'd like to share one last thing on my mind before pulling the plug on this blog entry.

The Autistic community is often faulted and targeted by opposing groups for supposedly turning a blind eye to autistic spectrum individuals who are faced with extreme challenges (and difficult to manage co-morbid conditions) on a daily basis. 

New Brunswick lawyer Harold Doherty, father of an autistic son, states:

Who gives them [the Autistic community] the authority to represent autistics? What does Ari Ne'eman know about Conor? He has no real investment in my son's life. There is a denial in this movement of the challenges of more autistic individuals. It's not a feel-good story to talk about kids who are smashing their heads into things.

Such arguments against the Autistic community are a fallacy, as well as a desperate attempt to corrupt us. On the other hand though, what can the Autistic community offer to parents of *challenging* autistic children and adults? 

A few suggestions that come to mind:
  • Establish clear boundaries and expectations, as well as set up and stick to meaningful and helpful routines 
  • Maintain a low-stress environment (as much as possible) 
  • Eradicate pity, and instead, accept, celebrate, and appreciate uniqueness
  • Foster special interests and use them in positive productive ways
  • Allow the autistic person to be who he or she is without shame and disappointment 
  • Take a close look at the autistic person's daily environment. Lighting, colors, temperature, clothing, noise, patterns, and seemingly trivial things may profoundly impact an autistic person's ability to relax enough to take in information and process it with success--this is probably the most important suggestion I can offer
  • Remember that forcing autistic children to refrain from spinning, stimming, rocking, and other non-violent measures to self-calm, or self-stimulate, often has disastrous consequences
  • Lobby for a better life for autistic people as a whole, inclusive of support in adulthood
  • Search for and join--or create--a positive network of support and services, in addition to aligning with like-minded people 
  • Read Jim Sinclair's essay, Don't Mourn For Us

Related articles:



Barnard Power (about the intricacies of the disability community)

DIR/Floortime, ABA......How Best to Teach? (positive and proactive parental message)