Image description : Blue square with back text:”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. Judy Endow on Ollibean
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 sufficiently 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 pay 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.
JUDY ENDOW, MSW
Judy is an autistic author and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.
You explained this so well, Judy. I understand that it’s not just about “passing” but rather much more about “sucking it up” as a necessary means for survival.
wow you worked really real hard. I also want to run my own business. I’am going to a seminar next week to learn about business classes.
What an enchanting story. I’m going to share your story w/ a friend. She’s raising a son w/Asperger’s.
Judy, you’ve had quite a challenging life–but I thank you for all the “suck it up” experience and sharing your life so openly! You are an inspiration and immense help in educating many who are raising or know persons with ASD.
Another great blog from Judy Endow! I agree whole heartedly with this statement of yours, Judy: ” I hope the lives of younger autistics have broadened possibilities as we go forward into the future.” I would add that it is in part BECAUSE of the work you are doing (speaking, writing, consulting) that there is hope for broadened possibilities of younger autistics as we go forward into the future.
I do hope things are changing for the better – largely thanks to wisdom from beautiful, amazing people like you, who so patiently try to teach compassion to the rest of us!
Judy, I aspire to be like you. “Suck it up, cupcake!” has been my life’s motto – the only way I make it through. I spend a great deal of energy ‘passing’ because I have to. <3
I hope someday to further my education and make career changes so I can be find more ASD-Friendly employment and better utilize my natural traits. As with so many others with ASD, it isn't the job itself that is difficult – it is the required socialization that is necessary to be part of the hierarchy. Very emotionally exhausting and draining. Big Kudos to you for all you have overcome and all you continue to endure. <3 I am hoping to start my own blog next week. Fear of failure has kept me from doing it for so long. Change begins with me (even though I'd much prefer a weighted blanket and a good book!) ;)
Unfortunately the world is not changing for the better of acceptance, or at least not in my part of the world :( I have just removed my child from school who has been having to hide away who he is and pretend so he can try to “fit in” but that is just too much an expectation for a 7yo :(
Thanks for sharing. In reality no one really knows what you go through until you have been there. You are extraordinary!!
Wow. I am in the same boat and in every way relate to you, Judy. I am a mom of a daughter with Aspergers and her diagnosis helped me to come to my own.
I used to be able to pass much better than I do after 10 years of parenting her. She is very sensory seeking, I am very sensory defensive. She is emotionally volatile, I am cautious and anxious. The ten years of parenting her have worn me down as well as opened me up and made me understand how much of “me” is just a mess of coping strategies, compensating mechanisms, fear, guilt, worry about when the veneer will snap in odd places, and the secrecy I’ve felt all my life about trying to hide my obsessive interests and intense focus on topics. I worry so much more about making others comfortable than I do about taking care of my own needs, because i have learned to mistrust them on a basic level and think that my gut reactions to things are usually wrong (and offensive, probably as well, with the potential to hurt others).
Raising her has kind of exploded my front. It’s almost been a crisis for me because I am not able to pass any more as I was before. I can still work, but only for a few hours at a time before I start to “show” and feel intensely anxious. I’ve learned to be ok with not wanting a social life except online where I can control and pace communications, and not have to think on my feet. I struggle to maintain a gainful livelihood while still taking her to all her services. All this struggle and paradigm shifting for me has caused a lot of emotional turmoil and health issues. I have had to get therapy and am still working out a lot of these things.
In a way also learning to “pass” is hard because you can easily get invalidated as autistic, and your struggles can be dismissed with a happy pep talk that doesn’t apply to your real concerns at all. My psychologist may know and understand, my doctor may understand, but the average person just thinks “why is this very smart, eloquent person with so many talents so dysfunctional, underachieving and lacking in confidence?” But over time, you get wired to fail if you internalize your conditioning that told you “mistrust any part of you that is acting or thinking autistically.” You underachieve because it is so hard to “achieve” while knowing all the social rules about what to say and do to avoid stepping on other people’s toes, fixing things they want to keep broken, etc. You are dysfunctional because you spend 90% of your mental and emotional energy in trying to appear normal, which often means dumbing yourself down and turning down the volume on the things that make you great… but also different from the norm. You can be unconfident because you are never sure you are doing or saying the “right” thing and live in a state of anxiety as well as sensory overload that you find clever ways to conceal.
Thank you for this!
Also wanted to add that I work much the same way you do… I do consulting work in one of my special interest areas a couple of times a week. I can handle that for about three hours at a time before I become exhausted, and it keeps my social muscles strong. The rest of the time I work at home. I don’t have or really need a “real life” social life other than enjoying time with my family.
Judy captures the importance of society acceptance alongside the dilemma of ‘fitting in’ so well here. Its Ok to accept who you are and it is OK to learn ways to meet yours, your friends, and your children’s needs
Judy, i have been ‘sucking it up’ for so long that i don’t know how or when i can ‘safely’ stop, thinking i just might end up as a puddle on the floor (ho ho).
thank you for writing that, annie :))