If you are not familiar with autism spectrum disorders and do not have a loved one, relative, or close friend with a known autism spectrum disoder, you may not be aware that there are two factions within the world of autism, among parents, professionals and individuals on the spectrum themselves. These two factions, who use entirely different models to make sense of autism, can vehemently oppose and even hate each other. This is bad enough to warrant Facebook groups with the mission to end bullying among those in the autism community.
What does this have to do with you who are not in this community? you may wonder. Well, one day you can have loved ones, relatives or close friends who may learn that they are on the autism spectrum and it will be an issue. The first faction are those who use the "autism is a disease and must be cured" model and the advocates for this model can be very impassioned in their efforts to push their agenda to find a "cure." These "cure" people view autism as a disease, like cancer or any other disease. They blame the sharply rising incidents of autism spectrum disorders, including higher-functioning subtypes like Asperger's Syndrome and Pervasive Development Disorder--Not Otherwise Specified (PDD--NOS) to vaccine toxicity. This also includes the more severe, classic autism which has been diagnosed for a much longer time. They blame what they see as the poorly, badly-timed administration of vaccines to babies in recent decades. They see autistic children as needing to be "rescued from" autism so it can be "wiped out" and defeated and this aim permeates any approach they take in interventions for autism children, including medications, special diets, behavioral therapy, sensory integration therapy, or other programs. The goal is to get these children to "grow out of" their autism and become "normal." It seems that the majority of nonprofits use the "cure" model to understand autism and target children, teens and maybe young adults. These nonprofits include Autism Speaks, Defeat Autism Now!, Generation Rescue, Age of Autism and others. In many counties in the US (not to mention outside the US), doctors and other professionals operate practices and clinics that use the "cure" model, medicalizing autism and offering medical procedures in the effort to cure their autistic patients. I have a number of issues with this "cure" modeal. First, there's little clear or convincing evidence that vaccines play much role in causing autism. The "cure" model fails to take into consideration the fact that professionals simply diagnose children today with Asperger's Syndrome or with PDD--NOS, who would have been diagnosed with other mental health or learning difference labels. For this same reason, this "cure" model dismisses the issues and needs of so many adults like myself, who grew up with clusters of differences that would have come under the autism spectrum disorders umbrella had we grown up today. Also, it seems that so many of these interventions are financially-motivated, rasing the hopes of desperate, vulnerable families who yearn for a cure for what they see as a terrible disease.
I sympathize with the families of those who see autism, especially the more severe, classic autism, as a tragedy and who place all their hopes in anything or anyone who promises them a "cure." It is more difficult for such families to use the "acceptance" model to understand autism, I'm sure. The acceptance model contrasts with the cure model that more and more people in the autism community seem to be using. The "acceptance" people realize that autism, including its higher-functioning subtypes like Asperger's Syndrome and PDD--NOS, is a neurological disorder that affects the way that people see and relate to themselves, others and the world and that this doesn't have to be a tragedy. They hold that the real tragedy lies in society's prejudice, intolerance, ignorance and failure/refusal to accomodate these differences in autism, that make life so difficult for children and adults with autism. These parents and professionals focus on getting a child to control and modify the characteristics of autism rather than to "grow out of it." The acceptance model focuses on the strengths of the autistic individual while working with them to overcome their challenges. Many adults with autism, who realize that they are still autistic and always will be in this life, subscribe to the acceptance model. The "cure" model's biggest flaw, in my opinion and that of many others, is that this model refuses to see that children with autism become adults with autism, however controlled and modified their autistic trats may become. The one nonprofit that clearly uses the acceptance model is the Global Regional Asperger's Syndrome Partnersip (GRASP), a nonprofit that comprises many adults with autism and serves teens and adults with autism. The "acceptance" people vehemently oppose the idea that autism is a disease in need of a cure and that such a view is an insult to autistic people. They don't see autism as a disability but as a difference that moves many to have formed an autistic subculture, much like many deaf people use the sign language of their countries and have formed Deaf subcultures.
The anger and hostility that these two factions level at each other can be bitter. Months ago, a person in my social network, on Facebook, was venting her frustration with seeing lots of posts by those who liked to showcase the hard-won accomplishments of higher-functioning people on the spectrum. This person has a child with more severe, classic autism, strongly adheres to the "cure" perspective of autism and is an advocate for families with more severely autistic individuals. She posted something along the lines of, "I'm sick and tired of seeing posts about what those with Asperger's can do! What about our kids with classic autism? You never hear about this kind of autism. What is inspiring about THIS form of autism?" This person realizes that the many issues facing families such as hers are indeed real, troubling and devastating but this person fails to see that the issues facing those with higher-fuctioning autism, while different, are just as troubling, devastating and real.
Over a year ago, when I added a certain person to my network of friends on Facebook, this person made it clear that my position in this person's network would be endangered if I showed support for Autism Speaks, Age of Autism or Generation Rescue. Over the following days, I saw this person post, "I'm deleting anyone who feels that autism is a disease in need of a cure or supports Autism Speaks, and I don't feel bad about it." I understand how this person feels, but with all the challenges facing those in the autism community, particularly from society, shouldn't we set aside our differences and accept each other, even if we may dislike, even detest each other's views?
At another time, I would visit a blogspot that the person, who has a child with autism, maintained and which covered issues specific to autism. This person's normally targeted other parents, their issues and concerns. At one point, this blogger departed from this person's usual format and invited adults with autism to share their stories, wanting to give them a voice. She posted blogs by autistic adults for awhile. One day, I visited this person's blogspot and this person stated frustration with readers with children with autism and their bullying of the adults whose blogs this person had posted. This person posed these questions, along these lines: "Parents, one day your children with autism will become adults with autism. Think about the world they will face if future parents take your attitudes. When you model the hate you have in your comments and responses to these adults with autism, what kind of world are you modeling for your children?"
In literature for autism and on at least one more autism blogspot, writers have expressed concern that adults, in calling for the world to accept them and accommodate them, defeat their cause by expressing anger and rage at an unwelcoming world. A couple of writers have stated that they believe that the autism subculture is "overdone" and that they prefer to identify with the larger society and adhere to its rules.
Clearly, these two perspectives can't be merged and in the free world, it's acceptable to hold to whatever view of autism you feel most comfortable with, as long as each side makes the effort to respect the other side and set aside these differences when needed.
http://www.info.com/WhatAutismis/
This is a site that leads to many other sites where you can educate yourself about autism and autism issues.
No comments:
Post a Comment