18 I Am an Autistic Woman

Amy Sequenzia

My world was ever expanding, but I was being pulled back from it.

I WRITE THIS not only from the point of view of an Autistic woman. What I have to say is about Autistic girls, Autistic boys, Autistic women, and Autistic men. It is about how important it is to understand our way of interacting with the world, how important it is that we rely on each other, and how important it is that neurotypical parents rely on us to help the younger and future generations of Autistics.

When I was about two years old, my diagnosis was PDD-NOS, although I think at the time it was simply PDD, or pervasive developmental disorder. Soon after, I was diagnosed as Autistic. Before the PDD diagnosis, a doctor said I had cerebral palsy. Other doctors did not follow through. I identify myself as Autistic.

It is known that girls are less likely to receive an autism diagnosis. Women might find it difficult, too. Most likely because of society’s expectations of how girls should behave, be, or react, we are less likely to be diagnosed and sometimes the diagnosis comes later in life.

This was never an issue for me. Once I received my diagnosis, the fact that I am Autistic was never in doubt, and the doctors agreed.

That was then. Even though the diagnosis was not controversial, growing up was a little more complicated. Several times I was said to be an “atypical” Autistic, maybe because I liked to cuddle, could make eye contact with some people, and liked to stim but not in a way that was considered a “typical autism stim” (I don’t know what people meant by that).

The first thing many people thought when they saw me was “mentally retarded.” I am non-speaking and did not have a reliable way to communicate. I could make noises and echo a few words, and I could make a light laughing sound. To me, this was communication, but people around me would hear just a lot of nonsense.

It was difficult for me to respond to people’s voices. Sometimes it still is. Those times when I could make eye contact with other people, I could not understand the words they were saying. I was focused on their faces. Sometimes I was seeing the words as a colorful, dancing group of letters. It was beautiful and nothing else mattered. When someone said my name, three little letters—green, pink, and yellow—would float around, and it was like music.

My response to people talking to me was, usually, a stare and a smile. Their conclusion: “She can’t understand anything.” I could, but interaction was hard, and the beauty of the words was much more attractive.

The fact that I would simply smile when talked to was, at least once, “tested” (as witnessed by a friend). A person said something to me, forcing me to look at his face, and I was mesmerized by the words I was seeing. The things he was saying, according to the friend, weren’t nice things. Yet, I smiled. His conclusion was, to him, obvious: “Amy is not home, and she does not care.”

It went like this: “She is smiling; what a sweet girl. What a shame she cannot understand anything, and she does not care either. She is not Autistic, and if she is, she is ‘very’ retarded” (language of that time).

All this still happens. From the misconception of my intellectual ability, to my being able to make “good” eye contact, to my not being able to respond to verbal prompts. I still look very disabled and, to some, not “really” Autistic. So, their conclusion is that I have an intellectual disability. Most people, when they learn I am Autistic, will say, “Oh, she is in her own little world then. Poor girl.” (Yes, they still call me “girl.”)

I have to say that I don’t think people who have an intellectual disability are lesser people than Autistic people. I don’t know if I am intellectually disabled or not. I don’t think anyone knows exactly what this means. I just point out the confusion because I am certain of my Autistic identity, and many people refuse to see that I am, indeed, Autistic.

Here is one thing I wish my parents knew: my world was ever expanding, but I was being pulled back from it because everyone wanted to make me do and react to things as if I could experience them like neurotypicals do. They wanted me to fit into their molds of misconceptions and prejudices. My reactions did not fit the little they knew about autism and Autistic people. They decided that my diagnosis, my identity, was wrong and labeled me with what they believed was a “lower grade.”

My parents were exceptionally loving, but the information given to them was not about hope and accomplishments but about tragedy and resignation. They were very close to giving up on seeing me as a person with a future. Luckily, they never gave up. But the path was not easy, and it was full of bumps.

I wish they knew then what they learned later: That autism has gifts, like the words dancing to a symphony of colors and the unique physical sensations each one of them brings. That my smile, my expressions, didn’t have anything to do with what people were saying but everything to do with what I—only I—could see. I wish they knew then that my learning process was different, yet efficient, and that I could not learn anything if I was not given the materials and opportunities to try.

This way of experiencing the world should be used for the benefit of Autistics. I believe it facilitates our interactions, expressions, and communication.

When I didn’t respond to someone but just stared and smiled, my parents would look down in sadness (ableism was everywhere, including my home. I am glad to report that they’ve learned and come to value and respect all disabled people). Had they known how connected I was with beauty, how I could absorb knowledge, maybe some of my early experiences would have been less traumatic.

Another misconception I experienced growing up Autistic was the one that assumed functioning labels are accurate and helpful. They are neither. I am a very complex person. I am Autistic, and I have cerebral palsy and epilepsy. The effects of too many seizures, too many hospitalizations, and too much medication resulted in my development being even more delayed.

Autistic people do have developmental delays, some of us in many areas. We take a more wavy and somewhat difficult path to achieve our milestones. It might take longer for us to learn some things the way neurotypicals do, but we do learn them if we have the proper supports. The seizures did prevent me from developing in my own Autistic time. They got in the way and it made what was already difficult to do—develop at the same pace neurotypical kids were developing—even harder.

As I was gaining some skills my typical peers had gained about three years before, a storm of seizures took over my brain.

I had just learnt how to type to communicate and my parents were delighted to see that I was not the tragic child without a future they were told I was. I could finally make choices; my first one was to ask to leave the luxurious institution where I was placed to “make my life less burdensome on my parents, while giving me a chance to experience some form of human life.” The doctors were very good at reducing my life to subhuman status.

Because of the terror in my brain, I spent most of the next two years in the ICUs of hospitals, afraid, scared, and feeling lonely. My mother used to tell a story that a nurse heard me speak one night. What did I say? “This place sucks!” I was the only conscious child there. I don’t really remember speaking those words. I remember the emotions but not the events. If I really spoke them, that was the only time, in my whole life, that I used spoken words to convey a message. I certainly felt that way. That’s how bad that period of my life was.

All that time in hospitals interrupted my life and my development. Every few weeks I was pulled away from my process of learning by uncontrollable, life-threatening seizures. I did less, typed less, and learned less. My development stalled.

Not my thinking, though. My brain somehow survived the attacks and I was more and more eager to learn things. My body did not oblige. The trouble I had making my body respond to my will became so bad as to make me feel that, for a few days at a time, I did not have a body. Seizures did that to me.

Slowly, falteringly, I began relearning how to move, how to make my body relate to the environment. I wanted my Autistic, somewhat awkward movements back, even if my Autistic body did not efficiently respond to my Autistic brain. The seizures made me feel like I had a brain that did not recognize my body at all, and this was unbearable.

The two-year ordeal with the hospitalizations, plus the side effects of all the medications, left me in a constant state of tiredness, seemingly unresponsive, almost unable to walk. All this was another reason for doctors and teachers to be certain of my “low-functioning” label. They were so sure of their failed assessment. They couldn’t—or didn’t want to—see that my brain was still active. Tired, but active.

This is what I wished my parents knew: doctors, teachers, and “experts” didn’t know much about autism and about how we process things. They gave me a label that did not require people to expect much of me. I was left to relearn and learn by myself, to understand things and answer to my own questions in my head. To them, I was so damaged that one seizure, or one hundred, would have the same effect. My brain was already so “abnormal,” why worry about how painful and debilitating the whole ordeal was? Add to that the doubts about my ability to type, along with a made up, highly publicized controversy about the validity of facilitated communication. I was silenced, silent and alone.

My parents still believed in me, but they fell for the tragedy speech of people with the right credentials. The fearmongering was powerful, even back then. I was to be placed in a special education class since I could not learn much. Because I was “severely impaired” and “very low-functioning,” my parents were told to just hope for some basic life skills and a lot of luck for my adult life.

Where I lived, in Florida, the school system was a big failure. I ended up in a group home in another state. Too many promises of a dedicated staff and an appropriate curriculum fell flat. A few people who saw me as more than a label could not really change how I was classified. I lost four years of growth. I typed very little, and I was still being silenced. I did not learn anything from them. I had to pick up on conversations to make sense of the world. Nobody talked to me. They moved me from one class to another, from one therapy to another (I liked music therapy, but the staff did not pick up on that either), from shower to table to bed. I was alone.

All this happened because doctors and other professionals convinced my parents, through fear and pessimistic projections, that I would never be more than a needy child, and that the best they could hope for was that I had a safe place to live.

There are big implications and great damage caused by functioning labels. The first one, and this should be obvious, is that they dehumanize us. No neurotypical person would accept being called “high-functioning” and therefore be expected never to make a mistake, or to be called “low-functioning” and therefore be ignored and belittled.

The second one is how those labels are imposed on us by people who claim expertise yet never really listen to us, and by people who use the labels but have no idea why they do so. Others use the “functioning” labels to separate “them” from “us.” They are good, we are bad; they can, we can’t.

Being called “low-functioning” and dismissed as a lost cause did enormous harm to my self-esteem. My loving parents were so worried about my future—not how much I could accomplish, but if I could simply have a safe, maybe happy existence—that they accepted that a beautiful place, though full of empty promises, would be satisfactory to me. They were fooled by the fear dumped on them.

I was still typing/talking with them and they knew how I felt. But their fear prevented them from seeing and hearing me. They did not presume my competence, not when it came to big decisions about my life. I could make choices, chose my food and what to wear. But they were led to believe that I could not really know things, have dreams, or analyze. I wasn’t “that smart.”

I know they struggled to reconcile this lack of presumption of competence with some of the decisions they made. After all, I was typing very insightful thoughts. I don’t blame them. The belief that a life with a lot of schedules for meaningless activities would be more beneficial for me was mainstream, and the school system continued to fail me. Besides, back then, there were no Autistic role models. But I wish they had known that I was very aware of everything and that they had not trusted so much in the neurotypical definition of me.

Another thing I wish my parents knew when I was growing up is this: my facial expressions are deceiving, and my ability to empathize makes me act against my own good.

I have been, for the most part, a quiet and, according to many, “sweet” person. Until a few years ago, I had not even typed or thought about words like “empowerment,” “self-determination,” or “self-advocacy.” I would just hope for understanding and a happy outcome.

In difficult situations, even in abusive ones, I just smiled. It was not a real smile, but that was what everyone saw. Or I would do my best to disconnect from reality and lose myself in lights and colors, reacting to the outside world as if I were on automatic pilot.

Of course, that was one more reason for people to say that I couldn’t understand or feel anything, or that I didn’t care.

Once, with second-degree burns on my arm, and in a lot of pain, someone looked at me and, seeing no expression of pain, said that I “did not feel pain.” I do, but my face does not show the intensity of the pain, or my reactions might not be what neurotypical people expect.

I used to, and still do, think about other people’s feelings before my own well-being. I thought about my parents’ struggle with the system to find a decent school for me, so I did not tell them that I was not practicing typing, that my days were full of empty commands to be followed to nowhere, that I was bored and that my brain was not being challenged. I knew they would feel bad and frustrated, so I did not say anything. I had too much empathy for them. I did not know how to self-advocate.

I thought about my doctors and teachers, and how much smarter and knowledgeable everyone believed they were, about how they were trying to help me, so I never told anyone that they were bad professionals. I knew some of them were good in their hearts and I did not want to hurt them.

Empathy and my “sweet nature,” my not knowing I had rights, and the years of people saying I was so broken made me an easy target for abuse and compliant behavior. My facial expressions made it “clear,” to people who thought they knew it all, that I was not a sentient, intelligent being.

I wish my parents knew that. They would not have stopped looking for better places where I could learn. They would have tried to lift me up.

I am telling these events about my life because I think it is important to know that Autistics do not process and react to things like neurotypicals do, and that this can be to our detriment, even when we are surrounded with love.

With all the negativity directed at us and at our neurology, we need good role models who have had similar experiences to help us, and who truly support us, to teach us how to cope and how to fight against the barriers and toward acceptance.

I have learned that. But I have not changed a lot. I still smile when upset, I still look serious when typing or reading a joke, and I still have not learned, or am not able to perform, so-called basic skills. I do speak (type) out more, and I connect more. I am learning to say “no” and to choose my friends more carefully.

That’s what I wish my parents knew: that community and role models are the best source for a happy Autistic outcome.

They did not have access to Autistic role models back then. But parents today do. And we Autistic adults are here to help. We know things about Autistic neurology that no neurotypical can even begin to guess. We can help every child be assured that they are worthy and perfect. This and parental love are key to a growing process with confidence and possibilities.

I had all the love, yet it was not an easy ride. I had to go through bumps and pain. I was misunderstood, mislabeled, mistreated. I lost time, I lost opportunities, I had to race, and I fell behind.

I wish everyone knew that unless our voices count, the bad events that happened to me will happen again. It does not have to be this way. As I said, my parents eventually learned the things that would help me. Not without mistakes, but we all succeeded in our journey together. My mother was my loudest cheerleader, and my father, today, follows me in my activism. Their trust, acceptance, and support help and encourage me to keep being the best me I can be.

I wish they knew that I would find my voice, my community, and my purpose. They lacked resources back then. Parents today can know a lot more and help their Autistic child’s path be much less bumpy.