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
Barnard Power (about the intricacies of the disability community)
DIR/Floortime, ABA......How Best to Teach? (positive and proactive parental message)