Autism, Being Autistic and Acceptance
By Amy Sequenzia
Self-Advocate, Autistic Self Advocacy Network
What is our place in the world? Who are we?
Those questions should be easy to answer. Yet, they are not.
For a long time, and still today, the answer to the “Who are we” question was not directed at us. Non-autistic people defined autism and autistic for us. We were told who we are, why we are “like this” and what we should do to “get better”.
Some of us, deemed hopeless, were told that the only place for us was an institution.
Nobody Talked to Us
But we were not really told anything. Nobody talked to us. Our parents were given the “sad news” and shown the bleak future ahead, the “lost lives” of their children. We were sent to isolated Special Schools, segregated classrooms, we were thought to be unable to learn or to relate to others, given therapies to make us look and act “more normal”.
Neurodiversity wasn’t yet a word. Autistic people were a mystery, our lives without a future.
Some autistics, after intense “training” on how, for example, stop stimming, would become poster children for the therapies that “modified” their behavior. Such therapies ignored the real reasons for stimming and made the neurotypicals around those autistics more comfortable.
Some things like making eye contact with any and everyone was thought to be vital to prove that we could understand human relationships; flapping hands or spinning were labeled annoyance and non-compliance; covering our ears, rocking, and avoiding being touched, despite being understood as being sensory related, were still something to be modified, stopped.
The neurotypical community did not know how to include us; they did not know how to approach us; worse, they didn’t really want to interact with us. So they boxed us, transformed us into puzzle pieces and called us “a mystery”. That may sound better than words and definitions that hurt like “retarded”, “weird”, “severe”, and expressions like “not capable of human empathy”, “not able to feel emotions”.
But being labeled a mystery is not a good thing either. I know who I am and I am not mysterious. If I accept this concept, I will be denying who I am, I would accept that someone should uncover the “real” me.
So, who are we and why do we want acceptance?
We are part of a spectrum and we are unique individuals. In this sense, we are not different from neurotypicals. Everyone is unique. What’s different about us is how we react to, and interact with, external factors and how we process and perceive them. We might also have a different way of communicating. Some of us might have difficulties expressing our thoughts or we might need extra time to arrange them in our heads before speaking; some of us don’t speak at all. Non-speaking autistics are not “non-understanding” autistics.
Being autistic is not “hard” or a reason for pity. We don’t know how not to be autistic, happiness and accomplishments are not impossible goals. The problem arises when non-autistics perceive us as damaged people, as people who should be sheltered and isolated, cut away from life experiences; when we are said to be too difficult to be part of a more diverse community; or when families become the focus of all the “hardships that an autistic child brings”. Sometimes autistics that are less disabled – or look less disabled – are called weird, self-centered. Their accomplishments not fully valued and their hidden disabilities not taken into account.
So, the neurotypical world became fully aware of us, of our different ways. But it was, and still is in many senses, very patronizing. For the reasons I already described – the focus on the families’ “suffering”, the behavior therapies that would “make us better”, the almost complete exclusion of autistics from the conversation – the awareness never really moved too far.
I don’t say that with contempt or lack of gratitude. Many of the people who were my allies in many phases of my life worked tirelessly and did their best with the information, knowledge and resources they had at the time. Some of them are allies in the neurodiversity movement today. I believe my experience is not unique.
Answering the Question
To answer the question “what is our place in the world”, I need to talk about acceptance. We do not have a place in the world if the world does not recognize us for who we are, the way we are. Acceptance means working with us, autistics, to find ways for us to better succeed. Acceptance means listening to us on the matters that affect us, and respecting our inputs. Acceptance means recognizing that autism is a big spectrum and that labels like “low functioning” segregates ideas and that everyone has something to say; and that labels like “high functioning” does not make those autistics immune from very real issues that need accommodations.
Acceptance will make awareness practical, real. It will bring neurodiversity to the everyday lives of differently able people. Autistics will have the louder voice on matters concerning autism. This will make it possible for us to have the same opportunities as everyone else.
Acceptance means not having to fight for simple accommodations, for services that can help us live up to our potential. Being able to be ourselves, and the best we can be, should be a basic right that comes with acceptance. It should be about a deeper understanding about us, and an expectation that we might succeed, in our own way.
None of this will be possible without collaboration from parents, teachers and other allies that have already embraced neurodiversity.
A change in how schools deal with issues like bullying needs to be addressed by all of us, relentlessly. Autistic students are still more likely to be bullied in school than neurotypical students. They are not understood and they are not accepted. For students who have more disabilities or who need a higher level of support, acceptance will come with more constructive approaches to their needs and the end of indiscriminate use of restraint and seclusion.
Autistics adults who have more needs also deserve to be accepted. I am one of them, and I believe I am finding my place in the world. Despite being very disabled, and even though I face great discrimination and skepticism, I have, for now, the support I need, I am accepted by a number of allies that encourage me to keep speaking up. But it is still a limited number of people who fully accept me for who I am, the way I am.
And that is the point I want to make: autistics from every part of the spectrum need to be accepted. We have different needs and these needs must be addressed if we are to succeed. Acceptance of all autistics will make it easier for the new generation of autistics to receive accommodations and specific services for specific needs. Acceptance will improve understanding. Some of us will be professionally successful, opening up doors for others. Some will, with support, be able to have a less stressful life and be successful, in a different way. Even the ones of us who are more disabled can be an example of how the right support can help. Maybe we will be able to communicate better and regain our dignity – sometimes taken away from us just because the world is too overwhelming for us to deal with. Or maybe the autistics with more visible disabilities and in need of more assistance will be accepted and treated with respect even if they cannot show their abilities. Acceptance should not be a privilege.
I believe that my place in the world is where I want to be. My place in the world is how I choose to live my life. Acceptance of all autistics and acceptance of autism will make it possible for me, and all autistics to take hold of our place in the world, without having to prove we are worthy. We are worthy, we want to be heard, accepted just as we are.
Amy Sequenzia is a a self-advocate who types her thoughts. She is a self-described autistic self-advocate and poet. She blogs for Ollibean.