This installment of Autism For A Lifetime: Finding Joy in the Journey is the opinion of its author, Linda J. Walder and solely reflects her point of view.
I have tried to think carefully before I write. I believe that neglectfulness in thought before word is one of the biggest problems the autism community is having right now. With a recent barrage of stories focusing on adult autism in the media and several more in the pipeline, I wonder, are we as the drivers of information and opinion truly thinking before we speak? Are journalists acting responsibly when they tailor their presentations to fit their personal viewpoints? Are authors of books doing in- depth research using many different sources and importantly, primary sources (namely autistic adults) in portrayals they profess are accurate? Are people in the autism community such as parents and advocates who use Facebook and other social media taking a breath before they respond to points of view they do not agree with? Some are thinking carefully before they express themselves, but many are not.
It has been almost 17 years since I began my journey in the world of adult autism.This journey started from the most profound grief I will ever know, the death of my little boy. My little boy was nine years old when he died and he was autistic. Everything about his life was unexpected, starting with his diagnosis that in those days was called Pervasive Developmental Disorder. We lived as many families do on a roller-coaster with devastating downs and exhilarating ups, and mostly we tired not to fall off as we went along. And then suddenly the ride ended so abruptly that I could not even move, I could not get up for a very long time. Eventually, I did get up, and I did get off of the roller-coaster, and when I stood before it I knew that I had to get back on. I had to do it for my little boy, and all of his classmates and all for others who like him were on this ride. But it was different now because I could look beyond my fear that was now tragically behind me and into the future with more objectivity.
During the almost two decades I have served as the founder and executive director of this organization, I have seen so much that inspires me, but nothing even comes close to the people I have been blessed to know who are diagnosed with Autism Spectrum Disorders (ASD). Their stories, their challenges, their triumphs, their goodness, their frustrations, their exuberance and yes, even their pain is inspiring. These individuals, of all types, with many different backgrounds, needs and dreams are the people who matter to me most. I also am in awe of the thousands of parents and families who strive on a daily basis to make the world a better place for them. Surprisingly however, I have observed recently that it is all too often the people we would expect to be cheerleaders for the adult movement who are the anti-inspirers.
When non-autistics boil over with their personal fears, pain and doomsday mentality about adulthood and autism they are not advancing the adult autism movement. This is not in any way to say that many of their cries for more programs, opportunities and options for adults are not valid. Indeed, to continue to create more to accommodate the increasing adult population is needed. What I object to is the insensitive way anti-inspirers are expressing their frustrations and also the inaccurate statements that are being made by some. One of the most insensitive kinds of statements I have recently heard goes something like this: “self-advocates just do not understand the needs of those who are more challenged by autism and cognitive disabilities.” This is just not so! I have spoken with many leaders and organizations who represent autistic adults and the majority do understand the diversity of the spectrum and believe that their calls for acceptance as a matter of human rights pertain to all people diagnosed with ASD, not just themselves. I also believe the only thing we do when projecting fear with divisive language is to create more fear and more division, like fighting fire with fire.
In my view, we should recognize that there are worries, there are needs, there are fears but the presentation should not be one of doom and gloom and “woe is me.” The presentation should not characterize adults on the spectrum as “scary,” for instance. Why must we use the tactics of negativity to attain our goals when we have the chance to inspire America and the world with the good things that have been achieved already? The vision of all we neurotypical folks should first and foremost be the vision inspired by autistic individuals. Yes, there should be a place in the dialogue for the thoughts of family members and others but we must recognize that these are their thoughts, not necessarily the thoughts of even their own loved one with ASD. Even non-verbal individuals communicate their likes, dislikes, needs and wants and we must take time to listen in more ways than with our ears.
I know that the autism community can do better. I hope we all take more time to think before speaking, to listen with open minds to one another, and to inspire progress through positivity. How can we legitimately ask for more respect from the community at large if we are disrespectful of others within our own autism community? We do not need to paint a picture of hopelessness and despair to the world to affect change, rather, we need to use all of the colors of the spectrum to share the diversity of needs and challenges ahead.