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MAKING SENSE OF AUTISM

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My Story - Susan Golubock

Staci Neustadt

This is my story about how commonly accepted implicit biases impact on

individuals that society judges to be disabled. This is also a story about “ableism”

which is a form of subconscious discrimination in favor of able-bodied people.

It wasn’t until I entered first grade that I realized that I was different. For

several days, the teacher would call out the names of the children, and we were to

raise our hand and say “Present.” Every day, I waited for the teacher to call my

name, but she never did. I thought it odd that there was a girl with the same first

name that never answered when the teacher called her name. I told my parents

about this strange thing that happened every day at school, and they laughed but

did explain that she was probably just mispronouncing my last name and that the

next time she called on this “other girl named Susan,” I should raise my hand.

Everything in life seemed confusing to me. My siblings would ask me to play with

them, but I preferred my solitary play with my 2 clothes pins (the kind you used to

use to hang clothes on a clothesline) because I didn’t understand their form of

pretend play. As a baby, my mother said I did not like being picked up and cuddled

and I never cried for attention. The only way she knew I was awake was she could

hear me rocking and banging my head against the crib. I had to be bribed to

speak single words at age 2 but when I finally did speak, I spoke in whole

sentences.


As it turns out, the first child ever diagnosed with autism was only 2 years

older than I, yet at that time it was not a diagnosis that most doctors recognized

unless the symptoms were severe. I assume that my family thought that treating

me “like everyone else” was the right thing do, even though it was obvious to them

that I wasn’t. I thought I had no choice but to struggle to learn how to be what they

seemed to want me to be by doing and saying what they told me to say and do. I

practiced mimicking facial expressions that I saw Shirley Temple use to express

emotions on TV, because when my dad would tell me to “smile for the camera,” I

didn’t know how to make my face do that. I struggled to understand the meaning

of the words people used but was laughed at when I would ask for explanations.

Over time I learned to hate the self that others didn’t seem willing to acknowledge

or accept, while at the same time, I became more and more angry anytime

someone would praise me for being the person they seemed to want me to be.

Jump to adulthood. I chose a career as an occupational therapist because it

fit my sensory needs to avoid touching other people or working in busy

environments or with multiple people that I found overwhelming. Being an

occupational therapist also fed into my passion at that time of learning why my

brain didn’t seem to work the same as other people’s brains.


Finally, at age 50, I discovered autism. The more I read, the more I understood myself…the self that I had abandoned so many years ago. I approached the psychologist who was

diagnosing children in the school district in which I was working and explained to

her why I thought I might be on the autism spectrum. She agreed with my self-

perception but went on to say she didn’t see the point of pursuing a diagnosis

since I had seemed to have already “accomplished everything people could

expect for an individual with autism.” What she failed to grasp was what it cost me

to do that…I had to abandon the only “self” I knew and liked to conform to other

people’s expectations of me. I pursued the diagnosis anyway and promptly set out

to seek and become involved in a community of other autistic adults. During my

first encounters, I was terrified that my years of learning to “mask” (i.e., pretending

to be the person I knew I wasn’t) would prevent them from accepting me as one of

them…like my family had done. Fortunately, my fears were unfounded. They

readily saw and liked the self I knew myself to be. I became and remain an active

member of this community. Over time I learned, with help, to let go of the anger I

had at what I now recognized as the subconscious societal pressure that

everyone feels to conform in order to “fit in.”


I am aware that revealing these personal things about myself may make

some of you feel embarrassed for me. The first time that I spoke openly about

being autistic it was to a group of therapists and teachers who worked with me in

a school for autistic children. Before I was to speak, the director approached me

and told me, “You know you don’t have to do this.” I was stunned. She was letting

me know the risks I faced by exposing myself to the judgement of other people

since Autism is considered a mental disorder (even though current research is

now pointing to it as a bio-neurological difference). Even today, most people have

subconscious biases that view mental illness as something “wrong” with the

individual that needs to be “fixed.” They think they are protecting the person from

the judgement of other people by not “noticing” or talking about their differences,

but they only succeed in making the individual feel unacknowledged and

unaccepted.


This is where “ableism” comes in. Since conformity is a subconscious bias

people have about the importance of “fitting in”, decisions about what is

acceptable or that works for “most” people is considered the “norm.” Those with

disabilities are expected to conform to the “norm” even if it is not within their ability

to do so. One example for me would be my discomfort with fluorescent lights. Like

many autistics, I have a limited tolerance for being in a room with fluorescent lights.

The subtle flickering and unnatural color of the lights makes me feel increasingly

anxious. Finally, I can’t take it anymore and need to leave the room.


While working as an OT in a school setting, I was told repeatedly that I needed to teach the

autistic students I was working with to “get used to them” because “that’s just how

the world is,” and the world isn’t going to change just to accommodate them.

I don’t expect the world to change to meet the needs of those who are

different, but it would be nice if the world were more consciously aware of the

value of diversity. Where is the beauty in nature if all flowers and trees looked

alike. Where is the creativity among humans if every person is expected to know

and do the same things or think in the same way?


Since coming to Friendship Village, I have discovered friends who are willing

to share themselves with me and value the autistic self that I share with them.

There are times I still struggle because of my differences, but I am especially

grateful for the support I have found from these friends since my husband, who, for

over 50 years supported me through my discovery of the self I had lost, passed

away almost 5 years ago.


Thank you for letting me share my story.



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