“Who do you see when you look at me?”
“Do you actually see me or do you see what you want to see?”
“Why can’t you see me, the real me?”
These are questions I have found myself asking for as long as I can remember. I have multiple invisible disabilities. Seeing me in a classroom or a waiting room or a doctor’s office or even in my own home may not provide the image of someone who has multiple invisible disabilities. What do you picture when you hear the word “Autism” or “Autistic” in conjunction with me?
Do you picture a woman who is a mother and a wife, has been a teacher for 18 years, has two blogs and maintains three Facebook pages, has a Bachelor’s in Science in Earth Science Education degree and Masters in Education degree with an Autism Certification, and is transitioning to being self-employed?
Or do you picture someone who rocks back and forth and side to side, who flaps and hits her head, who has trouble speaking at times, who has misophonia and can’t tolerate ticking noises, or eating noises, or tapping noises, who has meltdowns and shutdowns, who has debilitating anxiety and panic attacks that result becoming in a ball on the floor, who also often hides in a quiet corner, who has tactile, audio, visual, and olfactory sensitivity, who has proprioception difficulties and executive function problems, and who struggles with transitions and self-care?
Both instances describe me. The first instance describes my major accomplishments in my adult life. The second instance has Generalized Anxiety Disorder and Complex- PTSD intertwined with Autism in the picture presented. I have read many personal stories doing this very same comparison and I find it very interesting how often there seems to be this duality of perception when it comes to an Autistic person. There is the image, either positive or negative, that people see (or want to see) and this image is only half the story, half the person. Then there is the reality that an Autistic person is actually both perceptions wrapped together to form a whole person, the Yin and Yang of perception. You need both to see the whole story.
For a long time there has been this prevailing misconception that involves a picture that is generated by people when they hear the word “Autism”. This image involves that of a non-verbal Caucasian boy who sits in a corner alone and rocks back and forth and who is also obsessed with trains. Then there is the ever popular Caucasian boy behind the glass wall. There are others that are similar, such as the movie “Rain Man” portrayed. Where do these images come from? There has been blogs written about this so I won’t divulge into it. Un-boxed Brain wrote a great blog about it. You can find that here – Images of Autism.
I went to a conference this past week that centered on disability, advocacy, and inclusion. I really enjoyed it and I got to meet and hang out with two really great ladies who are also advocates. There were problems, however, with the sensory environment (i.e. all the fluorescent lights and loud pounding music). It appeared that participants’ with sensory needs were not taken into account when planning the conference. This conference was 3 ½ hours from my house and I went to it alone and stayed in a hotel for two nights. I hadn’t had a respite in 2 ½ years, so I considered the conference to be a short respite for me. On the last day of the conference I began to feel weird. I wasn’t ready to leave. I felt the respite was too short and I really enjoyed being in a place where people spoke the same language. There was a level of understanding there that I don’t often come across in my daily life.
The conference ended on Thursday. Today is Saturday and I still feel weird. Last night I started to try to put words to what I was feeling. “Disconnected” seemed to fit. I feel disconnected. My family and I are in the process of moving an hour away from where we currently live. The walls of my house are bare and my living room is full of boxes. If felt weird coming home. In an attempt to put this disconnect into something coherent, I ended up posting the following to my Facebook Page:
“Finding myself hunched over in my chair in the kitchen with my arms bent up close to my chest and the back of my palms up against each other while I am rocking back and forth. A sarcastic thought going through my mind, “Nah, I’m not Autistic at all.”
Me rocking back and forth is not a good sign. It means I am stressed. Having trouble transitioning back from the conference. Been feeling weird since leaving the hotel. Just feeling disconnected. I am going to go for a run after binding my bad knee. Maybe running in familiar territory will help.
In my professional life, people are very surprised to learn that I am Autistic. I get, “But you don’t look Autistic!” or the big eyes and tense body posture like I got at the conference. Even in my personal life there are people who “forget” about my diagnosis. They seem to only want to see me in a certain way. Yes, I am Autistic with a pride capital A!
Days like today are hard. Transitions are hard. It takes time. It doesn’t help that my walls are bare and my living room is full of boxes in preparation for moving. Okay, enough wallowing. Time to head outdoors, hit the back trails, and go commune with the trees.”
In struggling with the recent realization of my self-care problems and dealing with what the heck has been going on with me since leaving the conference, I also posted the following:
“Yesterday, my son made it very obvious to me that I have a problem with self-care. He told me that I have a bad habit of not eating and he is right. I have the hardest time with preparing food and actually eating it. I have to really think and plan all the steps necessary to make a meal and then eat it. Is it lack of spoons? Is it executive function problems? Is it my sensitivity to hot weather? I don’t know. I don’t really eat in the winter either, come to think of it.
I tell myself that we are a low income family and I need to save the food for the kids, but going grocery shopping yesterday I realized once again that I hadn’t really gotten any food for myself. I didn’t think too. Just my standard Diet Coke. I bought ingredients for my special gluten free spaghetti and just the thought of having to cook it makes me nauseous. What is that?
I talked to my husband this morning about my self-care issues and he told me he has known about that for a long time. Why have I not been in tuned with my own body? Maybe that is the problem. I am out of sync in some way. Here it is after 10:30AM. I have been up for four hours and I still haven’t eaten. Both my kids have eaten, though.
The idea of moving my body correctly from my bedroom, down the hall, to the kitchen, then opening the fridge, trying to decide what to eat, moving my body in the way necessary to take out whatever I decide on, and then completing the numerous steps necessary to prepare the meal, and dealing with all the sensory stuff on top of it exhausts me just thinking about it. Then there is the whole process of eating and dealing with the sensory stuff with that. By the time I am done preparing a meal I don’t have enough energy to eat.
Don’t get me wrong, I like to cook, but I have to plan in advance and conserve spoons when I want to make big meals like my special green chili enchiladas, or my stews and soups, or homemade jo jos, or any special dessert dishes. I don’t do it very often, because it takes so much out of me when I do.
It is frustrating really. I know I need to take better care of myself, so why can’t I?”
Today is Autistic Pride Day. I take pride in who I am. I was diagnosed 4 ½ years ago at the age of 36. I found out I wasn’t broken after living a lifetime of feeling that there was something not right about me. Again, that feeling of being disconnected, an out of sync feeling, a problem of not feeling that I fit anywhere and no one seemed to see me, the real me, anyway. I felt like I was often screaming in my head, but no one took notice. That all began to change after being diagnosed.
“Who do people see when they look at me and have had time to talk to me?”
“Who do people see after they have a chance to work with me?”
I have been targeted in my professional life for how I am perceived. I was targeted before I was diagnosed and I was targeted after. A principal wanted me out because I was a thorn in the administrations’ side. I had been a teacher in this particular school district for six years. I knew the law and I knew my students rights. I questioned the special education department and I strongly advocated for my students as well as for my own children. I was bullied by the principal the year I was diagnosed, because, for some reason, I looked weak to him even though he had no knowledge of my diagnosis. When I found out he was targeting other teachers as well as certain students, I took action. I followed the teaching contract exactly and took the necessary steps to rally my teacher’s union to come together and finally say enough was enough. I told myself either he is going down or I am going down with him. We succeeded in our mission. The superintendent asked for the principal’s resignation before the end of the school year. That was four years ago.
A year ago I was once again targeted in the work place. This time, though, my diagnosis was known. I was bullied, told to rise above my literal mind, and criticized over and over again. After I asked for the accommodation of being given specific instructions so I could do my job at a proficient level, I was fired. The reason being, and I quote, “We do not want a classroom teacher who requires accommodations.” It didn’t matter that I had been there for three years and that I was skilled in the job I was hired to do. I wasn’t seen for my ability. In fact, the person that fired me told me that she had never even looked at my resume. My experience didn’t matter to her. I was not wanted, because of how I am as an Autistic person and that I had asked for accommodations.
I have been discarded in my personal life as well. Thrown away because I was not how they expected and wanted me to be. I was thrown away at the same time that I was coming to terms with the reality that I am an Autistic individual. Instead of finding support in my personal life, I found emptiness. Social media was a godsend. I was able to create a social network online and then eventually I was able to actually meet actual autistic adults and their allies. For the first time in my life I was seen, really seen and understood. That was liberating for me. I found out I was not alone. I also learned that I had worth.
“If people want something to be wrong about you— they are going to make things wrong about you. That is why it is my belief to never try and prove anything to anyone. Real diamonds belong to people who know how to spot a real diamond; they don’t belong to people who need to be convinced that they are real diamonds. It’s the idiots who need to be convinced of something that they cannot already see.”
― C. JoyBell C.
So, today is Autistic Pride Day. It has taken me a long time to acknowledge that I am highly impacted and that it’s okay that I am. Sure, I can function independently for the most part, but that doesn’t erase the fact that I am a disabled person who needs accommodations. I need to acknowledge that I am capable and that I have skills, but I also need to understand that I have limitations. I need to feel safe in voicing these limitations and I need to understand that I can advocate for myself and keep advocating regardless of the results.
When people encounter my skills, they tend to erroneously assume that I can function at a consistent high level all the time. This is simply not the case. Due to the perception of others that think I am really not that impaired and that I am “high-functioning”, there is this expectation that I must maintain which inedibility leads me to push myself beyond my stress threshold to a point where I can no longer “pass” as neurotypical. When this happens people get confused, they get frustrated, and they get angry. They stop seeing my strengths and start seeing problems that they didn’t see before, problems they don’t want to deal with. This leads to a perception change and I am not longer seen as having worth. It is unfortunate that this is has been a common trend in my life. It is not often that I am seen as a whole person, but when I do it is amazing.
“Yin / Yang : Two halves that together complete wholeness.” – Personal Tao
I am the sum of my strengths and limitations. It is the Yin and the Yang of what makes me the person I am and I like who I am.
I would like to introduce you to the whole me, The Aspie Teacher!
Take stock in the fact that you are not alone. Other Autistic individuals are out there. We hear you, we see the whole you, and we understand. Take pride in who you are. You are worthy and don’t let anyone else tell you differently.
“You can be the most beautiful person in the world and everybody sees light and rainbows when they look at you, but if you yourself don’t know it, all of that doesn’t even matter. Every second that you spend on doubting your worth, every moment that you use to criticize yourself; is a second of your life wasted, is a moment of your life thrown away. It’s not like you have forever, so don’t waste any of your seconds, don’t throw even one of your moments away.”
― C. JoyBell C.
**All images have been link to source. The photo of myself is my own.