7 Years After Embracing My Identity #AutismPositivity2015

By Ben Edwards

Today is Autism Positivity Day, and, conveniently for me, it almost coincides with the day where seven years ago I decided to fully embrace the fact that I am an autistic man, not man with autism, but autistic, with a Capital A. I know seven years is not much of a period, but for me, this coincides with the time I finally got my Bachelor’s degree, after seven years of college, fighting uphill against two college environments that for an autistic were hard to adjust to. Yet, in that time, I also started and led collegiate organizations on both campuses that stressed an environment where autistics could be themselves. I also started two autism blogs, which have now together garnered over fifteen thousand views in over sixty countries, spoke to children at an autism camp twice—which I had formerly attended as a teenager, the high school students of my former school for youth with intellectual and developmental disabilities, the Psych Club, Pursuit of Happiness Day forum, and the 2015 Spring Leadership Conference at UCM, wrote for the Autistic Speaking Day blog, the Autistic Self-Advocacy Network of Kansas City, the Horizon Academy (my high school) newsletter, the UCM Muleskinner, KCTV, the Kansas Legislature, JCCC’s Autism Beyond the Diagnosis 2008 Conference, and Autism and Neurodiversity in the Classroom on the struggle of the autistic community. I would also write The Friend of Autism Pledge, donate artwork to the Mission Project Housing for people with I/DD, and make poster presentations for Disability Awareness Week in 2013 and 2014, and Autism Acceptance Month in 2014 at UCM. I would also graduate UCM’s intellectual and developmental disability THRIVE program two years before I became the first, and so far only THRIVE student to graduate with a Bachelor’s degree, although many did go on to become regular students at UCM and other universities. The thing is that my life has changed so radically, as have others I’ve heard, from embracing who I am, something I have only truly done for less than a third of my life.

But despite all this, I actually feared telling my story to just anyone. I feared I would become an idol for “inspiration porn,” which is frequently the tone of any disabled person who rises above societies abysmal expectations of them, or, worse, overcoming autism. At no point was I free from self-doubt that largely seems to go unheard of with autistics like Temple Grandin and John Elder Robison. I questioned my decisions frequently and even blamed myself for whatever suffering came the way of my fellow autistic UCM students. In fact, if it were not for my meditation, spiritual life, true friends, family, and fellow Autistic Student and Peer Organization, JCCC Autism Spectrum Support Group, ASAN-KC, Camp Encourage, Horizon Academy members, various autistic and ally Facebook friends, I literally do not think I would have survived the last four years of completing the collegiate autistic advocacy experiment in Warrensburg. At every point, I encountered opposition from people who claimed to be true friends of autism, and am still learning much of the backhanded nature of their acts. Many said to me that given our societies unaccommodating nature of autism, these people did the best they could. However, all of them had in fact acted selfishly. Over my time at UCM, I learned four valuable lessons of how to get autistics to create a community that truly embraces people like us, including:


  1. Do not, under any circumstances, use the puzzle piece. Yes, the puzzle piece may be very well known, but if groups advocating for autistics care about us more than the group, they will sacrifice their commercial success for individual’s welfare. Any point where the name of autism advocacy is used to gain a competitive edge over others is almost certainly for selfish reasons. What really annoys me these days about the autism puzzle piece is that it seems to be a socially acceptable way of calling someone the R-word. Yes, every autistic person is unique, but I found rainbow mosaic or kaleidoscope symbols (not with just primary colors) also represented every autistic person’s uniqueness in a cohesive, natural way. A kaleidoscope’s changing ways can also represent autistic’s struggle to adapt to society.


  1. ACCEPTANCE, not awareness, is a mantra for change. When young, naïve neurotypicals stop me in the streets asking them to support their cause of autism awareness, I wish to ask them, “I live with autism 24/7, and it is in my sleeping patterns, dietary habits, and even the way I move. How can I not be aware of it?” The fact that a person would automatically assume I am not autistic leads me to wonder how much their cause is really promoting awareness. Awareness tends to emphasize elite neurotypicals and institutions lending their name to the cause of autism then it does the diverse stories of autistics in our own words. It is a paternalistic relationship, enforced by the perception that autistics are basically all children, not an empowering one.


  1. Blue lights cannot be away to welcome people you wish to be fully accepting, self-respecting autistics, for their only true association with autism is the logo of an autism an autism organization (Autism Speaks) whose financial, commercial, and corporate aspects are, at best, questionable. It would be like wearing gray for Black History Month, as gray was the color of the Confederate soldiers. Instead, I wear gold, whose chemical symbol Au is the first to letters of the word “autistic”; red, the color of a heart, which has been proposed as an alternative symbol for the puzzle piece; taupe, the color of the Tree of Neurodiversity, also suggested as an alternative symbol for the puzzle piece; and orange, the color of the spark logo of the Celebrate Autism Foundation, also suggested as an alternative to the puzzle piece; or rainbow colors, not just blue, representing the diversity of autism throughout life, and the Autistic Self-Advocacy Networks rainbow heptagon symbol, also suggested as an alternative for something. No prizes for guessing what.


  1. Autistics must be empowered to speak for themselves, as individuals, and as a community, not by neurotypical parents, celebrities, school spirit faces, or institutions. While neurotypical loved ones may help, they must not talk over, manipulate, or review for approval the voices ofautistics, because while many doing so do intend to help, let’s look at what picture this creates ofautistics: individuals, regardless of their age, who need mommy and daddy to fight their battles. Rather than empowering images of people you’d want for your company, social life, or any aspect that is a key to autistic integration,autistics are devalued as children, much the way slaves in the American South were called “boy.” The Autistic Self-Advocacy Network meanwhile, has created resources for everything from improving autistic services to preventing murders of children to stopping disabled discrimination in organ transplants, and has made substantially more differencethen elite individuals who wish to speak forautistics. For the first few years I knew I was autistic, these things—puzzle pieces, blue lights, awareness, and helicopter parents— were all I knew of the autism world. Consequently, I did not embrace my autism, and would not have done all this stuff for the autistic community if I hadn’t. I hope my fellow autistic individuals will be motivated to do the same things I have done and make this a better world for people like us.Original Post: http://autistdharma.blogspot.ca/2015/05/autism-positivity-day-2015-post-7-years.htmla6620-925e0399dd2041d17f9d40e6390963bb

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Filed under Acceptance Love and Self-care, Autism Positivity 2015, Autism Positivity Flash Blog, Flash Blog Posts

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