“Sucking It Up” To Pass as Non-Autistic

Written in English: “Sucking It Up” To Pass as Non-Autistic
http://www.judyendow.com/autism-and-aging/sucking-it-up-to-pass-as-non-autistic/‎

French Translation: Se faire violence pour « passer sous le radar » de l’autisme
http://www.judyendow.com/french-blogs/se-faire/  ‎

It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. Just like all other adults I need to pay the monthly bills, buy groceries, have transportation, etc. This all poses quite the conundrum for me.

I spent most of my life to trying to figure out the world around me – to fit myself into it in such a way as to feel more comfortable, raise my children, remain employed and have a few good friends. This all has come at a high personal cost. In many areas of life, I have to literally “suck it up” and be someone I am not just to have a ticket to participate.

I am in my late 50’s. I have lived my life differently than the younger autistic activists and the autistic children of today. I spent some of my growing up years in an institution. Autism was not a diagnosis given out back then. Instead, I had several other labels. My institution employed behavior modification. I learned to “suck it up” to purchase my ticket to freedom – discharge from a state mental institution. If I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I needed to buy was important enough to me to be able to purchase.

As a young adult, I failed at my first attempt to get a college degree. For three years, I was successful at “sucking it up” and acting non-autistic enough (even though I hadn’t yet heard of autism) – acting as a stranger to myself, role playing somebody I wasn’t. It worked for almost three years. I learned that even though I could act as somebody I wasn’t every school day for three years, that being the person I was for one instance could undo all of the three years. If I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I wanted to buy was important enough to me to try my hardest to purchase.

As an older adult, I succeeded at my next attempt to get a college degree. By that time, I had almost 20 more years of “sucking it up” practice on my side. Even so, I knew there was a personal limit on how long I could “suck it up” – hiding my autistic self so others would allow me to make it through college. Thus, I sped through college as fast as I could go, cramming in as much as possible in the shortest time. I did a four year undergrad program in three years and a two year graduate program in one calendar year (a fall, winter and summer semester). Academics were no problem. The way I came off to other people was a problem. Therefore, the less I was around one group of people the better off I was in terms of not drawing attention to myself and in not alienating professors and fellow students. If I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I wanted to buy was important enough to me to try my hardest to purchase.

In my work life, I was able to “suck it up” and be someone I wasn’t so as to maintain employment to provide for my children. It was exhausting. And yet, if I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I wanted to buy was important enough to me to try my hardest to purchase. I wanted the freedom to parent my own children without someone deciding I was not able to do so. And believe me, I had more than my share of those someone’s in my life due to one child’s needs. One of those people who had power over me said as long as I maintained my job I would be seen as fit to parent my children. So, yes – a thousand times over I would again “suck it up” – to be someone I wasn’t for the sake of keeping my ticket to parent my children. They are now all grown living their own happy and fulfilled lives. “Sucking it up” was entirely worth it to me.

Today I am fortunate enough to support myself by running my own business. This sounds fancy and highfalutin, but in reality it means that I need to be in charge of my own schedule. I have figured out how to string together enough different kinds of work (consulting, writing, art, speaking) that I am able to maintain an income sufficient to pay the bills and live my life. The deal breaker is I must schedule my work in a way to provide me with alternate time at home (writing, art and preparing for speaking) and time away from home (consulting and speaking along with the travel involved).  Even so, this still means that when hired to consult and to speak I must employ a certain degree of “sucking it up” in order to get people to value my work enough to hire me. I continue on in this manner because I enjoy my work, my travel and in general, my life as it is today.

On occasion younger autistic adults fault me for “sucking it up” and being someone I am not. I know this because they tell me so. There is a term I have recently learned called “passing.” I am told that when I am “sucking it up,” I am “passing.” It means I have learned to act as a phony – a sort of pretense at being non-autistic. In reality, for me it means that when I am in employment situations I expend a great deal of energy to inhibit my natural self. This is necessary to me in order to support myself. Do I like it? No. Even so, I am glad I am able to “pass” when I need to because it has made my life better than when I couldn’t “pass” in that my income is more stable now than then.

Many argue that all people have to do this “sucking it up” to some extent. After all, we cannot just act however we wish when we are in public. I agree. However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot “suck it up” long enough each day to be gainfully employed. For me, it means I must pay strict attention to how I schedule my life. I must employ sensory regulating activities and much quiet time in order to be in shape to be able to “suck it up” when I go out the door to work away from home.

I think my life is the best it can be at this point in time. I hope the lives of younger autistics have broadened possibilities as we go forward into the future. I hope more autistics are able to be the person they are, utilizing the supports and accommodations they need, without society insisting they hide their very essence at every turn. I look forward to autistics having everyday lives with things so many take for granted – going to school, being part of the community, having meaningful jobs with living wages along with meaningful relationships. This is the stuff of a satisfying life. All people should have access without society’s requirement of “sucking it up” before a ticket is extended by the majority to those of us in marginalized groups.

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BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on March 20, 2014

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