Over the past decade, I have had the opportunity to speak to many groups of people about living with autism. Many of the events also had me participating in panel discussions alongside other autistics, as we answered questions from the crowd. On occasion, someone in the crowd will ask a genuine, well thought out question, as a person who really wants to know the answer. However, most of the questions we autistics seem to field are more about professionals, physicians, teachers, and parents looking to validate their own conclusions.
As society struggles to define autism, more specifically in defining the cause of autism, successful autistics such as myself are constantly put in a position in public forums to justify our accomplishments, and defend our diagnosis. One after another, as people approach the microphone, we autistics are forced to hear the resume of the attendee, usually followed by a battery of felicitations for which they seek approval, putting us in the position to either agree and be praised, or disagree causing the angry exit of other attendees.
What was supposed to be framed as a question about our first person view of autism, becomes a proclamation on who is actually the expert. It is exhausting.
Placed on stage, and in the public eye, I know even my most subtle movements are being watched and analyzed. Neurotypicals in the crowd reinterpret my inadvertent body language, eventually placing me in the position that whatever words finally do flow from my mouth, will already be tinted by their conclusions. Not to mention their preconceptions of autism they had before coming in the door. As my frustration mounts, while I struggle to address the concerning statements in a diplomatic way, my body begins to vibrate, hands become hot, and all I want to do is stim. Inevitably, I cannot hold it in any longer, and so I verbally burst with sharp ended statements. I just can’t take non-autistics telling me how autism feels, acts, lives, breathes, and looks.
There are certain statements and questions that occur time and time again. In an effort to help restore panel discussions to a two-way learning experience where the autistic panel members are valued as experts and equals, here are the things I wish people would stop saying to adults with autism.
- “Well, you are successful so you must not be that autistic.” (Also stated as “You look normal to me. Had you not said you were autistic, I would have never know.”) – This is offensive on so many levels. By stating that I do not look autistic, one is presuming that there is a normal look, and an autistic look, and that they are distinguishable from one another at a glance, which is simply not true. It also presumes that looking autistic is wrong, or an invalid way to be. When people make statements about the severity of my autism based on my presentation of myself, and my accomplishments, it really says much more about the observers narrow minded view of autism. Rainman was a movie, not a portrayal of all autism for all time. I do not consider either of these statements to be a compliment.
- “I have trouble making friends too, so I must be autistic.” – Recently I heard someone phrase this same concept by stating all her family members have a “touch of autism.” I get so unbelievably tired of people diminishing the lives of autistic people because they believe they share one or two traits of autism. Autism is a complex, neurological disability that is defined by a collection of traits existing inside one person at one time. A non-autistic person saying they are autistic, or have a little bit of autism, over one shared trait such as hand-flapping does not make them autistic; no more than me being interested in auto mechanics makes me male. Normalizing autism doesn’t help either. Acceptance is the goal.
- “People with autism lack empathy.” – If you want to see me fly off the handle, then say this to me. Nothing could be further from the truth, and to say this to people with autism completely deflates us and puts us at a profound distance from you. It was actually suggested to me recently that people with autism would make great marksman because we have intense focus and no empathy. That statement deeply wounded me. I give without judging why the person in need is poor. I donate unpaid time on a weekly basis to helping children with special needs, both on and off the record. I put myself on panel after panel, knowing what will be said to me and how I will be put down, so that I can be an example of leadership for other autistics. I work to demystify autism, and empower families living with autistic people. I would leap to my own death in defence of my friends, both autistic and non-autistic, and I have been a shoulder to cry on for many, many people. I do not lack empathy, I just lack the ego to brag about it.
- “This diet, pill, method, or therapy cured my kid of autism.” – This statement is usually followed by what I could do to cure myself. Let’s get one thing straight – I do not want to be cured. I was not caused, I was born to be different. My autism complicates my life, but it also enhances my life. My biggest barriers in day to day life are the societal walls built by the non-autistic world, which are usually mortared with clinical research, pharmaceuticals, and the desire of “autism professionals” to satiate their own hero complex. Are there kids with toxins in their bodies that are cured? Yes, but those kids may not have autism. Just as AIDS was once seen as only a gay men’s disease, science is not always clear on the small delineations of disorders and diseases. Perhaps there are autistic like symptoms from kids exposed to toxins, but we must remember that autism is not defined by behaviour alone. I believe that there is a difference between genetic autism and environmentally caused autistic like behaviour. I really believe this is something researchers just have not truly considered as of yet, and will be a defining difference in the future. Therefore a gluten free diet is not a magic fix-all for every autistic, so quit trying to take away my breadsticks.
- “We support autistics, after all there is an autistic person on our board.” – There are organizations that are finally starting to value the voice of autism, but there are still many who place autistics in their organizations simply for status or validation. Tokenism is widespread in the lives of people with autism. The truth is most organizations lack people with autism in leadership positions. Most autistics are unpaid for their time, and are denied having responsibilities or titles that allow them any sense of autonomy. Having a person with autism working in the mailroom or collecting your trash does not means your organization is valuing the contributions of people with autism. I can almost guarantee that more autistic leaders would mean more social programs, more college scholarships, and more entrepreneurial conquests for autistics. The non-autistic world must learn that we do not need to be helped, we need to be heard, valued, and paid.
- “You are stimming, you must be stressed.” – Not all stimming is stress related. Sometimes we just do it because we like it. Just like not all sexual intercourse is for procreation; some people have sex because they like the way it feels. Too many times I see parents stop their kids from stimming, either because they are embarrassed or they feel the need to go into problem solving mode. Unless the stimming is endangering the person stimming or others near by, let it go. As for me, when you see stimming learn to accept it as a norm. Then maybe I will feel more inclined to accept your annoying comfort habits like gum smacking, pen clicking, or desire to coat your body in scents you feel make you more appealing. We all have to compromise.
To accept the idea of neurodiversity, we have to start seeing certain aspects of autism as acceptable norms in an ever changing definition of society. If you really want to help people with autism, gives us opportunities to be heard and allow us into leadership positions. Help us to direct funding into projects that give us the freedom to explore our lives, rather than towards explaining why we exist. We already exist, now let us thrive.
#3: “People with autism lack empathy.” Wow! They clearly don’t know you. From the limited experience I have had with autistic people I’d say they are more uninhibited in caring about others and have no hidden motives for that caring nature.
“My biggest barriers in day to day life are the societal walls built by the non-autistic world,..” Imagine the world if it were run by autistics! It just might be a happier place.
“As for me, when you see stimming learn to accept it as a norm. Then maybe I will feel more inclined to accept your annoying comfort habits like gum smacking, pen clicking, or desire to coat your body in scents you feel make you more appealing. We all have to compromise.” Hahaha! That’s hilarious!
#7: many autistic people, such as myself, prefer to say we are autustic rather than “having autism”. As far as I’m concerned we get to call ourselves what we want to be called, be it “having autism” or “being autistic” but I Will Not Allow a non-autistic to give me the “person first” lecture. They do not get to define me. I define me.