It’s very common for autistic people to feel burdensome for our loved ones and for society, common to feel shame of being autistic, it’s sadly expected the existential guilty, there are entire narratives of how we should feel that (and how we don’t feel anything), how bad and wrong our autistic existence is, how who we are can be mourned, but this shouldn’t be happening, no one should feel like this, accepting this as normal is something that should be shameful for all that surround us, since they repeat this about us without feeling the weight of this judgement on their lives.
We also repeat this belief, we accept this shame as something natural, we feel the weight on our lives and the people who are free of this pain continue to hurt us, sometimes they hide this ugly thing in their love for us, they love us but if only we weren’t like that, this makes things worse, because we love too, we want to be loved completely, so that goes against our sense of self, we do our best (or our worse form another perspective) to look like everyone is supposed to be, not to be a better person, but to be a normal person, a non-autistic person.
One thing I need to clarify, many appear to understand something wrongly about being cured of autism, I do not wish to be “cured”, what I do wish is to love me the way I am, I also wish to keep changing to be the best person I can ever be, everyone changes, for better or worse, autistic people too, my changing as a person has nothing to do with being “more or less autistic”, with functional labels, with “symptoms of autism” or anything like that, it means that as a person we all change, I wish to keep being a good person and getting better, an awesome autistic person.
When we argue against cure, we don’t argue against having more skills, having a better life, being a better person, we want that, but we are always going to be autistic, and ultimately the really important part is to know that is a good thing.
Accepting Autism is not a defeat, is a great gift, it’s not the same as not changing or not wanting the best, is starting to love who we are (or your autistic child, sibling, friend, etc).
I think it’s enough of shame and guilty, of burdens, of prejudice, of sacrificing all for normality.
I think it’s time of acceptance, but even that is not enough. We need pride and love, not the type of – ‘I love you but if you were…’, but the’ I love you completely’.
Why do all of us need this?
A few examples of why, I read things from relatives of autistic people who worry me, like a parent of two children saying their typical child is wonderful, how the others members of the family are mentioned one by one as great people, but nothing about the autistic child, on a site about how Autism is terrible, not a single line about the autistic child, while the typical one is talked about with love, the autistic child is just the site theme and family burden, I read how an autistic person had their face lifted by their chin and looked in the eyes and how a parent says that there was no one there, I read how parents lost their (alive) children because of Autism, kidnapped by Autism, on these stories people listen and care about the family, I don’t, I think about those people who are not treated as people, those who ‘lost their souls’, I know they are right there, listening, this is terribly wrong and sad. We are right here and we are treated as we don’t exist.
How many times we must adapt and sacrifice for others? Why are we less of a person than others? Why are we never good enough?
I don’t know.
I am well aware of the difficulties and frustrations autistic people have, I have several of those myself, I’m not saying to pretend we have no difficulties, absolutely not, we can recognize that and feel pride at the same time, one thing does not exclude the other, I accept I have a disability (which is not a fate worse than death as many might think) but I am more hurt because of the guilt and shame, I suffer more because of the so-called normality than because of Autism.
I do not wish to overcome Autism. I’m autistic and I’m proud of it.
While I write this post, I can literally feel my mind fighting me, at the line above for example, I have a terrible feeling of wanting to erase that, because all I was ever told is that I’m not suppose to be proud, I’m suppose to be ashamed and guilty, I don’t know how many times I erased something good I wrote here and tried to diminish what I know is right, I changed from ‘being autistic is a good thing’ to ‘being autistic is not such a bad thing’, I changed so I could make allistic (non-autistic) people comfortable, I changed because my mind is fighting me, but then I decided to keep like I wrote first, because it’s not about allistic comfort, it’s not about the right to see Autism as a terrible thing, it’s about autistic people, all of us, it doesn’t matter how Autism affects you, everyone has the right to feel good being who they are, you don’t need to present arguments on why your existence is worthy, you don’t need to have this great splinter skill to compensate things, you don’t need talents, when I say everyone is worthy it means everyone.
So I am going to start to change how I feel about myself, how I feel about being autistic and disabled, I will start practicing being proud of it. It’s not easy when everyone disagrees, when the expected is something else, when the idea of being autistic and proud is considered ridiculous and sometimes even dangerous, I know all the possible arguments people will say, that I can only feel that because I’m ‘high-functioning’, I’m not and this is not the point, I will read the “what about the severe type of Autism?”, well, guess what, the more affected by Autism need this too, all people need to feel good about themselves, if you can’t talk and people treat you like there is no one there (I know this because of personal experience) you need this even more.
I know that life can be extremely hard for autistic people, I live it, let’s not make it worse, saying Autism makes someone suffers as an argument here doesn’t work, why the person is really suffering? It could be something that has nothing to do with Autism, if other people are cruel to you, it’s not alright to say they treat you badly because you are autistic, they treat you badly because they are terrible people, if you have serious difficulties, feeling that your existence is bad is not going to help you, why make things worse when you can feel better?
Blaming the person or Autism (which can mean the same as saying that something in that person is bad) for every suffering doesn’t help, maybe the person would have more joy, more happiness when feeling that the fault is not theirs, that who they are is alright, that being autistic is a good thing.
We need to accept Autism, we need to feel proud of being autistic, we need to love ourselves.
Alicia Lile blogs from Brazil at Moonlit Lily.
Autistics Speaking Day – Changing from shame to pride appears here by permission.