Here is what I think:
- It's because they think they understand autism and I simply don't fall into that category.
- It's because small talk cannot relate what autism really is. Only deep intensive discussions can do that.
- It's because the face I and so many others present to the face to the world are individual faces of autism and no two of us are alike.
- And it's because autism has been treated as a disease to be cured instead of what it really is.
The world as we know it has changed a lot in the past one hundred years. There have been many revolutions driven by business that have changed the world completely. We have walked on the moon. You are reading these words right now and you have likely never met me and likely never will. The industrial age works as a system. Children are sent to school at a certain age, expected to assimilate certain knowledge at certain times at the same frequency as their peers. After school is finished, these adults who were once children work for the next 50 years of their lives. Then, they retire and stay retired the rest of their lives. This way have life has reshaped the entire world in one hundred years. Everything has become systematic according to this industrial world. Education. Medicine. Art. The industrial society has worked hard for the past one hundred years to convince everyone that this is the single best way to live. A small handful of generations. When you think about it, one hundred years is really not the long when you consider how long mankind has walked the earth.
Autism is different. It makes the industrial world feel uncomfortable. Autism cannot be compared to the standard of what people are expected to know at a certain age. So the industrial world cannot rely on autism the same way as other people who are trained to become workers since first entering school. So industry assumes that those with autism are less capable. Then those on the spectrum show that they are indeed capable, producing great works of art, proving extraordinary capability in many different areas of interest. This makes the industrial world even more uncomfortable. Autism is something strange, new. The industrial society is afraid with no clear answer in sight according to their system. And this takes us to the present day.
Let me reiterate what I am today. Today, I am a college graduate, a musician, a writer, a podcast host, a friend, an uncle, a son, a brother, an idealist, a dreamer, a visionary, and autistic. This is the current end result of my autistic journey which is still in progress. Many successful stories told by those on the autism spectrum are very similar to mine. Why then is autism still treated like a disease to be cured? Should we not be patient with all members of the spectrum and try to nurture the strong gifts that can be found in all members of the spectrum?
Here is a fact about ASD. All cases of autism are like icebergs. Most of the activity is taking place below outside perception. Even a kid who is screaming, a kicking, and biting themselves can tell a story, not in the conventional way, but in the autistic way, if minds are opened and this "self destructive" child is viewed in a new way.
That new way is not easy to see. The industrial world has standardized everything to be based around profit generation, including the distribution of information. This reminds me of a simple principal of the news industry:
Bad news sells better than good news.
The public has proven that there is a greater response to negative news than positive news. So the news industry has been based around the premise that if a worker in the news business has to choose between showing bad news and good news on the evening news than bad news takes priority. Bad news is better for business. Bad news makes more money. So when information is presented to the public about autism it is more likely bad news than good news. Unfortunately, bad news has also skewed how autism is viewed by the general public and by decision makers who have the power to make a difference.
Autism Speaks is the largest organization in the United States that is based around autism. They have been under a lot of fire since John Elder Robison, who is on the autism spectrum, resigned from their science board. His accounts can be found on his blog. Now that Robison has left Autism Speaks, general outcry has stated that there is little to no representation by members who are on the spectrum. There are Facebook movements striving to remove the support of sponsors from Autism Speaks. There are also many who state that Autism Speaks has mishandled funds.
The fact of the matter is that Autism Speaks operates under the principles developed by the industrial world. These principles have led to their use of sponsors, their hierarchical structure, and nearly every action, every decision they have made.
I think that the single mistake Autism Speaks has made is that they look at autism with the same eyes used by the industrial world when those on the spectrum do not fit into that system. A possible solution? Toss aside the system and start fresh. The system has already proven to not work for those on the spectrum from education to employment.
Viewing autism through the eyes of industry also accounts for the information they report about autism on their website. Robison stated that the trigger of his resignation was an article written by Suzanne Wright displaying the worst of what autism has to offer. This is because Wright was using the news principle of the industrial world: bad news sells better than good news. As a result, many on the spectrum have stated that they find the article offensive. This is because, like I stated earlier, the system developed by the industrial does not work for those on the spectrum. The system depends on traits common among the majority of people in order to function. The simple fact is that autism is not the majority. The sooner that autism speaks realizes this, the sooner that they will be able to really make a difference.
My point is that everything we think we know about autism, the actions of Autism Speaks, the computer you're using now and the fact that you can even read has been determined by the industrial society that has shaped life for the past one hundred years. The same industrial society that fears autism because those on the spectrum do not fit into their system. Like I said earlier, one hundred years is not the long. Is there a better way? Is it now time to change the way we live our lives not according to the industrial way but an entirely new way? Comment below with your thoughts.